swilkinson

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  1. swilkinson
    I went on the first weekend of my course. There were 120 people on the camp, some newbie Bishop's Certificate people like me, some doing the first year of the Diploma and some in their second year who are just about to finish their Diploma. Now the people who belong to the Newcastle Anglican Diocese inhabit a small world and I have been around it a long time so of course I bumped into a lot of people I knew from way back. I would look at someone and think: "Could that be Ken..or Joe...or George?"..but wait, now they all have grey hair, and glasses and a few extra pounds around the middle. And I guess they all looked at me and thought the same thing. It was like a 40 year high school reunion, when you have all changed and not always for the better.
     
    It rained and rained, not heavily but as the cabins were scattered in large grounds it was a dash for the Dining Hall with umbrellas across large expanses of wet grass and with older folk that is a danger. But we all survived and thrived on the extra exercise I guess. There was reasonable food and enough cabins that we could all had a bottom bunk and none of us minded that. I guess it took us back to our Church Camp days when the kids and mums and dads would all have a bare cabin and we took all we needed to survive three days away. At least this time we had hot water for showers and good food which we didn't have to cook over a camp fire but dined in a nicely set up dining hall.
     
    That left one night back at home before I went to get Ray today. He seems to have enjoyed his break and looks well. The staff at Reynolds Court always say that he is no trouble. He seemed ready to come home and despite the fact that it was raining headed straight out to the verandah, word book clutched under one arm. The sun did come out for a while before lunch so he did enjoy that. This afternoon Trev and he played a few carnival games on the Nintendo, Trev had borrowed them from a friend and Ray smiled a lot as he beat Trev at a couple of the games, at least the first time. Then, as usual, he went to bed for his afternoon nap. All is normal again.
     
    What did I do with my break? Not a lot. I went up to visit our Cairns family, that was an excellent week. I phoned a few friends and some of our relatives and caught up with their news. And I went on the weekend away. This time I did not feel guilty or selfish or as if I had abandoned Ray, I just felt like someone who has put the load down for a rest. I think I deserve the break, and I certainly need it to recharge my batteries, to give me more energy and to raise my spirits. I need some time to restore that feeling of being a whole person, not a nurse, not a caregiver, just a middle aged woman called Sue who still enjoys her life.
     
    The study will be good for me too. It will give me another focus, something else to talk about, something that I have in common with people not dealing with a husband that has had a stroke. I need to feed my mind. I do a lot of pastoral caring, in the church and other organisations I belong to and as part of every day life. Often in the groups I belong to I am one who people come to to discuss what is happening with their lives. That is fine with me but it is also emotionally draining sometimes. So I need to be extra careful not to get down and depressed. I have allowed things to get to me sometimes and now I need to relax and let go of that responsiblity from time to time.
     
    And some of the old grey headed fellows did remember me from times long gone, some did make a point of sitting next to me at the dining table or during the lectures. Some were interested to catch up on my news as I was interested in catching up on theirs. So maybe this renewing of acquaintances will lead to more contact with other old friends too. I do think I need that at this stage of my life, to reconnect with people from the past. It is also good to be remembered for my former academic achievements as well as just being a wife and grandmother who looks after her invalid husband Ray. That is still a worthwhile thing to do, I love Ray and miss him when he is out of my care, but I do need to be a person in my own right too. It is important to keep my own identity. We all need to do that for our own good mental health.
  2. swilkinson
    Here I am, back home again. Where did that week go? A lot of the time was taken up looking after the grand kids but there was time for other things too. I went with Shirley to Timbral Practice and caused a lot of laughter by always finishing the exercise with my timbral ( tambourine) pointing in the wrong direction. The other ladies, mainly from Islander backgrounds, in the beginners class seemed much more musically agile than me and tried to help me with my rhythmn, which really made for a lot of laughter. Always leave 'em laughing, as an old style comedian used to say.
     
    Time sure flies by when you are having fun. There were trips to the park, to the shopping centres etc. The kids and I played totem tennis in the back yard and chased the cat and wrestled with their now full grown dog and played with her various toys. The kids have chores relating to their cat and dog and are really quite organised in what they have to do. Both had grown about six inches taller than they were when I saw them last September. It was good to spend that time with them.
     
    As Shirley had missed Mothers Day a fortnight ago and will miss my birthday on the 4th of June they took me on Monday evening to the waterfront to a nice restaurant where we had a lovely seafood buffet. The prawns were a mixture of banana prawns, a smooth almost yellow colored prawn and tiger prawns which are large with deep orange stripes, they were really delicious, the banana prawns sweet and the tigers tangy and I certainly ate my share of them. It was fantastic to be sitting outside at night, with balmy sea breezes blowing and the street lights on the Esplanade glittering in reflection on the water and knowing folks back here were rugging up with temperatures at least ten degrees colder and the winds ablustering and the rain apouring down. Does you good to gloat sometimes eh?
     
    Not all is sunny in Cairns, Shirley has a dispute between some of the ladies in her group, they are good Christian women but not angels so there is always a difference of opinion here and there. Of course they were very busy with their annual fund raising appeal but unfortunately did not get the funds they needed to totally pay for all the charity work etc they do. In the local area a large amount of funds are needed to support the local Salvation Army's work in drug rehabilitation, homeless shelters, welfare support etc. People who have put their hands in their pockets and donated to the Bushfire Appeals, Flood Victim Appeals etc cannot necessarily now put large amounts of money into other appeals and so some welfare areas will fall short of target and maybe have to reduce the services they can offer.
     
    As part of the Red Shield Appeal I got a certificate of thanks for looking after their kids and the small son of the other officers who have just come down from Papua/New Quinea to start another work in the area for people from that country. Albert is four and very cute and despite his use of pidgin English we managed to communicate well. He just loves Naomi who is close to his age and height and they had lots of fun together. I just love kids and the funny, and sometimes very honest, things they come out with. Talking to kids gives you a very different view of life. I wish we all lived closer so I could help them more than I do now.
     
    I called this entry "a mixture of bananas and tigers" because that is what my family is too. Ray had a lot of the tiger in him, in his youth, while he was doing his carpentry apprenticeship, he was an amatuer boxer for a while. Our sons are both tigers, from their boyhood they have spent time looking after the others weaker than themselves. Naomi is too, though at the moment that shows up mostly in her games with her cat. Hopefully later on, like her mother, she will champion the poor and in some capacity speak for those who have no voice. I am a banana, a joker, a person who likes to laugh, my grandchildren Tori and Christopher are both bananas also. Christopher's special subject this term is "hip hop" so to him life is a comic rhyme, and all day long he turns whatever he is doing into silly verse. It is driving his family mad but it is very funny and he had me laughing a lot, something I need to do right now.
     
    While I was still on my way home tonight my other son rang me to ask if I can look after his two sons tomorrow as Tori has Open Day in her section of her school and Mum needs to go there. We used to drag the whole family along of course but now there is not that provision where the little ones are allowed to play with the blocks in the corner with their older sisters keeping an eye on them while mother talks to the teachers, life has moved beyond that. So I guess I get to catch up with my grandsons again tomorrow...lucky me eh?
     
    So, back home to housework, homework as I study up for the first weekend of my course, and maybe some fun with the little ones...who knows?
  3. swilkinson
    Hi all
     
    My bags are packed. I can't drop Ray into his accommodation until 10am so I will have time to check, double check, panic etc long before I have to actually go down to Sydney to catch the plane. I am glad Trev is coming down with me as I won't have to tackle the city after dark and we will have a light meal somewhere so I don't die of hunger on the three hour flight.
     
    We had a nice weekend, the car boot sale at the church on Saturday, then an afternoon in the garden. It was beautiful weather though the temperature is dropping now so by 5pm you feel the cold air coming in and it is time to come inside for the night. We rarely get below zero now but we still feel the cold as with lots of windows and an open plan house it is hard to heat and I don't really attempt to heat it, I just keep adding layers of clothes until I look a bit like a penguin, except more colorful....lol.
     
    Yesterday we did a lot of odd jobs, paid some bills, collected a rebate for one of our specialists apponintments. We stopped late in the morning to have a cup of coffee ( me) hot chocolate ( Ray) at a little cafe we sometimes visit. It is good to allow yourself some extra time so there is that time to sit down and experience that leisurely cuppa and some raisin toast. It is what I expected to do as part of our retirement anyway, so it feels both normal and special to be able to do it.
     
    Today we had Grandparents Day over at our grandsons' pre-school. This year it was not a morning tea (government cut-backs, lack of extra funds????) so we stood in the yard and watched the little ones play in the sandpit, paint their hair ( one little girl) balance on balance beams etc. There were about twelve kids but only three sets of grandparents turned up. Ollie didn't really know we were there but Alex was most attentive so I felt it was worthwhile. Our photo was taken with the kids to go on the wall in their sleeping room. Alex even pretended to cry when we had to go so I guess the affection he shows us is really how he feels about us too.
     
    We went to craft this afternoon, a small group only today, maybe because it was raining and windy. Tonight we went to our Lions Club dinner, nice food, good company as usual. Again only a little group as many of the seniors are away on those trips up north, a normal part of retirement as you might go to Arizona or Florida, we go north to warmer climates. So we didn't have a guest speaker but one of the members spoke about his life. It is a good way of finding out more about a person and adds somewhat to our fellowship.
     
    This time tomorrow night I will be with my northern family. I won't expect any conversation from my daughter as she is NOT a night person. On Thursday morning we will all be scurrying to get ready, to drop the kids at school, to go on to her office. Then it is her Home League and weather permitting we are going about 20 miles firther up the coast for a picnic lunch and a chat and I'm hoping coffee too, so I will renew acquaintances with her group of ladies...and that is all the plans I know of so from then it will be whatever comes up for me to do.
     
    Thanks for all the support you give me, I really do appreciate it. I know sometimes we look at life through a very narrow lens, like looking down the wrong end of a telescope, that is what caregiving sometimes feels like. But tomorow night I will soar like an eagle and fly far awy from home...I am looking forward to it.
     
     
  4. swilkinson
    I just lost a blog, it expressed perfectly what I wanted to say...it was polished...it was wise...it was so good...and it disappeared into cyberspace. Dash it all!!!!
     
    We've had a few good days and a few bad days lately. I wrote a vent of a blog last night...I was so mad with how life is going I just couldn't think about the good things in life at all...so I wrote a blog that expressed all my ugly feelings. I can say I was lucky that it too would not post at all. No-one needs to read all that doom and gloom.
     
    Ray has had a few changes in his behaviour lately, he is a bit more argumentative, a bit more restless, has a bit of a problem with eating, what he wants to eat, what he doesn't want to eat. He is slow to get ready to go out although of course he might really enjoy it when he gets there but may not want to go out for various reasons. This is part of it getting colder as winter approaches I guess. This is difficult for me as everything takes him so long when he doesn't want to do something. Trips to buy groceries, to the doctors etc have to take place regardless of what he wants to do so we have had some arguments about that too. Here you pay if you break a specialist's appointment and I don't have the extra money for that. It is all part of the changes having dementia brings.
     
    Today I feel so much better about life, owing to a shock, a good talk and some co-incidences that gave me a new look at life. I have been worrying for a few weeks about how I was to get some care for Ray while I do the first weekend of my course in theology at the end of May. Whatever arrangements I made, none seemed to fit the situation. We have a cottage, like a group home, that takes people with dementia for four to seven days to give their caregiver a break, that seemed like a good idea. No they were fully booked in the time I needed. I went to both of the places he has been in respite before. One was booked out till June, the other would clear a space for him but it was for next week and the week after. Well, at such short notice how would I manage that? I said : "No, I will try to find something else" and that was where I was at last night, right down in the dumps thinking poor me, why is everything too little, too late or wrong size, wrong price, wrong colour?
     
    This morning I went to see Mum and she was in a wheelchair! Shock, horror! My little Mum who walks round and round and round all day long, in a wheelchair! It seems she had had another fall and so they concluded it was the fault of her socks, so one of the aides put shoes on her feet and now she seemed unable to walk. Well, of course, as she hasn't had shoes on for a couple of years she probably wondered what the heck they were! Luckily I had bought her new socks with the rubberised bottoms for Mothers Day. We put those on her feet , she stood up and away she went! Whew, what a blessing!
     
    I went from there to dementia support and sat through the lecture part of the program where the subject was "Routines". Routines are very important in the life of a person with dementia and to most of us if you come to think of it. We all have a routine whether it is how we get up of a morning, how we keep lists etc, all the different parts of our lives have their own routines. To a person with dementia a routine gives them a feeling of security, of being in control. Ray may not know it is Thurday the 14th day of May but he does do know it is shower day, shopping day, get a hot cup of chocolate day. For Ray Thursday is a social day as we see a lot of our acquaintances from church and the other organisations we belong to at the shopping centre, so Thursday is a good day.
     
    One of the daughter/caregivers at the meeting today asked the mentor a question I would maybe have asked: "How do I MAKE mum do..." and we all know the answer to that, you can't make a person with dementia do anything they don't want to do. You often can't reason with them but there are other ways. You can offer an incentive ( for Ray a cup of hot chocolate and a couple of cookies is a good reward) find some care for them while you go out, use your regular care time to do the things you have to do, or just make it part of an excursion to somewhere else they do like to go to. He said: "You can't reason with unreasonable people" and isn't that the truth. But you can broach the subject later, maybe ten minutes later in Ray's case....lol.
     
    We are taught that if you are dealing with a person with dementia or a brain damaged person you have to be the one to make the compromises. I used to get offended by that at first, like WHY should I be the one to ALWAYS make the concessions!! but it stands to reason that I am the one with the full count of brain cells. I am still able to change unlike Ray who is struggling to make sense of life every day, so I need to be the one to find the solution to the problem. And so I do. I endeavour, each time things change, to find a way around the problem. If Ray is to go on living at home and I am not going to go insane myself while taking care of him, I have to change my thinking.
     
    And so I took the two weeks at Reynolds Court but decided not to put Ray into care until Wednesday as we have an appointment on Monday, Grandparents Day at preschool for our grandsons on Tueday and Lions dinner on Tuesday night. Then while I was at the shopping centre I met up with a friend who asked when I was going to see my daughter next. I said I didn't know as I was just putting Ray into respite for a fortnight and so I wouldn't be able to go up to see her on my own and she said: "What is wrong with going now?"So I went to the travel agent, airfares had come down a bit and I will go up next Wednesday for a week. It is the worst week to go as the middle weekend is the Salvation Army Red Shield Appeal. Shirley and her husband Craig are the Captains of the Corps so they will lead the teams. So I will see the grandkids, the cat and the dog and my daughter and son-in-law as they rush in and out of the house. But that doesn't matter, we are family, and I love them and just maybe I can be a help to them.
     
    I just realised I can take up the next lot of bracelets and save the $5 postage...that will be a discount on my fares...lol. For my chatroom buddies that means I will not be doing the chat hosting for the next two weeks but I will be thinking of you all. Just be good while I am away.
  5. swilkinson

    no magic cure

    By swilkinson,

    Today I took Ray to the neurologist, he is the best known in our area and has been on Ray's case since the 1990 stroke so knows his history. We see him every six months as he hold a watching brief as do several other specialists. This way if Ray goes to hospital I can ask for them to be contacted about anything in their area of expertise. It is comforting to know that he will do that if asked.
     
    As usual we had the preliminary questions, I always supply some initial information like when Ray had the last fall and list any changes I have noticed in Ray since the last visit. I try to word it all so Ray doeesn't feel embarrassed and so does the neuro, we don't talk about BMs etc, he just asks me have I increased my wash days or something similar. Ray seems oblivious to most of the conversation, instead he studies the posters on the walls.
     
    Today I asked the specialist if he was doing any new drug trials, he said he was including being excited about a study that looks as if it could produce a medication of the future for prevention of some issues with dementia. I hadn't heard anything about this new medication but it is trial only so I guess if the trials are successful we will hear when? ten years down the track?. There is also talk of a vaccine to be used on close family members where families have histories of dementia. This will maybe prevent some family members who are at high risk from getting the disease. Wow, what a breakthrough that would be! But that too is in the early stages. The doctor added: "Sadly, nothing for Ray in the present trials."
     
    After ten years post stroke and three years since the diagnosis of dementia I am still searching for that magic bullet, the one that will reverse the stroke damage and let the old Ray shine through once more. I don't think I am being selfish when I wish life was so different for us, I think I am just yearning for another go at the nomal life, the good life of retirement adventure we used to dream was ahead of us. Silly in one way as even if there was a "cure" found today, five or so years of safety trials etc would make it too late for Ray. But still I wish and dream and google all possibe breakthroughs, new med descriptions etc, hoping to find a chemical solution.
     
    One piece of good news, on the advice of a friend I sent out an email to 20 or so people on my list asking them to write, or email or phone so Ray would have some contact with them. He is not good on the phone but he does love to get a call. The email said in part:
     
    I am writing this because a friend asked me what I miss most and I said "contact with friends" and she suggested I just contact my friends and express a need, for an email, a phone call, whatever seems appropriate. So this is it, my call for support. So just email, phone or visit, whatever it is you usually do.
     
    Because of the dementia plus his other physical problems Ray doesn't have the ability to process thought the way he used to. For instance he tells our 9 year old grandson Christopher the same story over and over about how he used to live behind Spencer school and if he missed a days school the teacher would come up at lunchtime to find out if he was sick. It is always the same story and I know Christopher must get tired of listening to it but he never says more than: "Yes Pa." at the end of the story. Ray does enjoy the phone call and speaking to his grandson Christopher, he enjoys it very much.
     
    If you speak to Ray on the phone he will ask how you are, how the family is, how your wife is - whether you have one or not. He will listen if you tell him a story and usually make the right comments, then he will say: "I'll hand you over to Sue now." I am just so pleased when people ring him. It keeps him in the loop - and we all need that."
     
    Well, we got three phone calls tonight. I talked to the callers, Ray talked to them, Ray even managed ten minutes on one of the calls. Our son Trevor said: "Looks like you got a month's worth of calls in one night Dad." and Ray laughed and said: "Yes, it does." that is the first time I have seen him laugh in genuine pleasure for some time.
     
    I guess my point is that it actually doesn't take a lot to make life worthwile, a phone call will do it. So maybe we need to reach out to others more often, particularly friends whose circumstances, like ours, are less than they would have hoped for.
  6. swilkinson

    thank you Ray

    By swilkinson,

    Like most caregivers I suspect I often fail to thank my spouse for going that extra mile, for doing something that benefits me more than it benefits him and for being tolerant in the face of me wanting him to do something that formerly he wouldn't have had to be involved in. Prior to the 1999 strokes that disabled Ray and retired me to look after him Ray and I lived very seperate lives. We lived under the same roof of course, we shared the resonsibilities of running a house and raising a family but we each had our own activities.
     
    Ray had always been in a service club for maybe twenty years or so and was in our local Lions Club. He went off to dinner meetings twice a month and also attended most of the service projects on weekends. He was also a board member and held one of the positions connected with one of the hands-on service projects. He was in training to be President in a couple of years time. I was simply his Lions Lady and turned up at dinners where partners were invited to attend with the obligatory plate of sandwiches or savouries or cake. Just one of many charming wives that attended.
     
    We both went to church but Ray went on Sundays to our "old church" and I worked two days a week plus five or so hours on Sundays in a parish closer to where I worked at my public service job. By then I was part-time working Wednesday to Friday only. When Ray had the strokes I had been doing the parish work for three years. I finished my Diploma in Theology in 1995, went back to work full-time and then in 1996 started the three days paid work, two days voluntary work in the parish. I got a lot of satisfaction out of teaching kids religion in schools, running women's groups, helping with Kid's Club and Sunday School when required and doing so many things in the way a paid assistant does but actually as an unpaid worker. Churches can't always afford an extra paid worker and so unpaid voluntary people who have had good training make up for the deficit. I was one of many but I was part-time for two days every week but others ran particular organisations and groups within the church structure.
     
    We also belonged to several other organisations so our life was pretty full. Our childen were young adults, two recently married and living close by, one settled a bit further afield but with a good job and a partner. All were independent and busy. They didn't visit us a lot but were happy to just keep us involved in their lives. I guess that made us a pretty average family. Of course we had lots of plans, travel, maybe a move further north, certainly more overseas travel. We also helped the kids with any project they were working on. As a carpenter Ray had always been "Mr Fixit" for friends, neighbours and anyone else who needed his help. He was always willing to lend a helping hand, a person who was very generous with his time. But he was still plagued by that pesky fatigue issue so not as busy with helping out as prior to the 1990 stroke.
     
    Ray had had the stroke in 1990 but after the six months of rehabilitation and his return to work life resumed it's pace. Mostly it was the same life as pre-stroke except for the fatigue issues - Ray worked full time but at home he was so tired and our social life etc suffered a bit because of that but we were coping very well. We never imagined that there would be other health issues ahead. We had planned some overseas holidays. Ray wanted to see Australia first but I was determined to take him to see England, I had come from there as a migrant child in 1955. So in 1994 and 1998 we had two six week holidays, in 1994 we had a two week coach tour on the Continent as well as four weeks catching up with as many of my relatives in England as we could. In 1998 we went over for a wedding of a girlfriend's son but also managed to do most of southern England, Ireland and Wales We didn't have any worries about Ray's health, he was "over it" right?
     
    And all that changed when he had stroke number two on 19th April 1999 and stroke number three on 10th May 1999. Life changed so dramatically for both of us. From then on we were together, I resigned from my job and came back to the parish Ray had continued in. I did some work there but just a small percentage of what I had been able to do in my last parish. Ray, his rehabilitaion, recovery and return to as good a life as we could manage was my priority and that is the way it had to be. It never occurred to me that I had any other choices.
     
    I also took on the care of my parents, bringing Dad and Mum to stay with me permanently in Septemebr 1999. Dad had terminal cancer and died four months later. Mum I kept with me for over two years. The ups and downs of that story would take a whole book, not a few lines so suffice to say she has been in her room in her Dementia Lodge now for more than seven years. The doctor said in May 2001 when Ray had stroke number four that it was time for me to place her in care and he was right, so in September that year I did so. A lot of the years in between then and now I have documented in my blogs.
     
    So why am I grateful to Ray today? It was the Orientation day for my new course today so we went just over an hour north of here to meet up with my 50 or so fellow students and learn what we had let ourselves in for. Of course the program is nothing like the prospectus but I think it is manageable. I have done study before so I know how to read a text, make notes, regurgitate it all in essay form. It will be a struggle time-wise but with careful management of my "free" time I should do okay. I am not heading for a credit or a distinction, just a pass will do fine. These days I don't have anything to prove.
     
    By a huge co-incidence Jeff, Ray's main carer/shower nurse is also on the same course. We knew he was a church attender in the same denomination as us but didn't know he was also a preacher. Apparently his minister asked him to do the course as a refresher as like me he had not studied for many years. So it was nice to see him today and we had lunch together and had a good talk. I am hoping that us being on the same course does not make for conflict in any future events, I don't think it should. It can be awkward sharing in groups with someone who knows you from another aspect of your life so I will be very discreet if Jeff is in the same group.
     
    It was a long day and by mid-afternoon Ray was nodding off in his wheelchair. I don't think much of the coursework information we were given today was of much interest to him although a couple of the guest speakers were quite articulate and humorous in their approach to their subject so he did join in the laughter - when it woke him up. Ray was amiable and smiled a lot, he acknowledged those who bothered to come over and talk to the "guy in the wheelchair". On the whole he seemed happy just to be with a group of people, it is not always that way with Ray now and I was very grateful.
     
    Tonight after dinner and before he went to get ready for bed I thanked him for being there for me, for participating in something I wanted to do even though he needn't have been invoved. He said it was a pleasure and I was welcome. It was a very gracious reply. Thanks Ray.
  7. swilkinson
    You know that saying: "a change is as good as a holiday"? Well whoever said that obviously had never lived the caregivers' life. To the caregiver a lack of change is a relaxed life. No change = good, change = bad. So why do I think I need to make some changes in my life?
     
    For one thing I know a rut is like a grave just not as deep. We form a rut in our lives when we do the same thing day after day. So when I set up my nice routine, where I know I can cope, know I can do the things that Ray can manage, where the sun shines and we go outside, the rain falls and we stay inside, that is good, BUT it is a rut. It is not really living, it lacks stimulation, new experiences, new ways of looking at situations. So I live but I don't grow in wisdom etc.
     
    I have just signed up to do a twelve months course - a very elementary one - on theology. Our present Bishop considers it a minimum requirement for those doing pastoral care in the church. This Certificate level course is only about one third of what I did in my Diploma in Theology which I finished in 1995. But 1995 is almost fifteen years ago so I guess you could say I have no current qualifications. So I signed up. I need it if I am ever going to go back to the life I gave up when Ray had the strokes in 1999. Then I was working three days in the public service, two days in a voluntary capacity in a parish, doing pastoral visits, teaching in kid's church etc. To do that now I need more qualifications or at least a refreshment of my old ones.
     
    When do I plan to use these qualifications? I don't plan on using them at all. The additional piece of paper will come in handy for future employment as an employer needs to know you are still capable of learning, or that is the way it is here. So telling someone you haven't been in paid employment for ten years is not likely to impress and another piece of paper might. Who knows what the future will bring?
     
    This also raises another question: Should I have instead enrolled in something that would give me more "employment entry" qualifications? Probably not as I can miss some parts of this course and catch up later if I need to so am not as tied down as I might be to other courses. I am able to get some weekend Daycare which is partly government funded to do the course BUT the venue is the Dementia Lodge where Mum is. I am not sure this is a good solution but only time will tell. Ray may be happy to be there for seven hours on a Saturday ( nine in all) while I am doing to course or he may not. Either way I need to go ahead and do the course. I will think of it as part of my "Sue time".
     
    The other change I have been looking at has to do with this house. I really do need an ensuite toilet in our bedroom. It would make life so much easier but our plumbing would not cope with it. So I need to either spend a great deal of money setting it up or move. Moving in the present situation would not be a good idea. Ray has a great love for this house which he mostly built. It is his safe place, his small heaven on earth. The verandah, the bedroom, now the shower room set up especially for him are all part of his security. If we moved I think the anxiety that would cause would accelerate his dementia, literally "drive him mad". So I am very hesitant to sell.
     
    There are so many decisions to make, just in everyday life. Think of your morning routine and how many decisions you make just in getting up and getting dressed and having breakfast. Hundreds of tiny decisions - shirt or sweater, long sleeves or short sleeves, long or short pants, colour of socks, shoes or slippers and so on. I make most of them for Ray. He now doesn't process the information needed to make even small decisions so I make them for him. I set out his clothes, I prepare his breakfast, he sits down and eats it. I may ask if he'd like a cup of tea or a glass of juice but mostly I just give him what I am drinking. It seems easier that way. I hope in doing so I am not over-riding decisions he would have made - if he was capable that is.
     
    So in trying to make decisions I can't ask Ray, all I can do is take into consideration what he would have wanted to do, based on my forty plus years of knowing him. Sometimes that seems a huge responsibility.
  8. swilkinson

    ten years on

    By swilkinson,

    Ten years ago today I was sitting in Bendigo Hospital about 800 miles from home. In the bed I sat beside was my seriously ill husband Ray who had had a major stroke and was now completely paralyzed down his left side, arm and leg now useless. He could not eat without assistance and his words were slurred and almost unintelligible. It was a bitter end to what was supposed to be a ten day holiday. We had taken our time driving down to Victoria from New South Wales. We had visited friends on the way and had a great time catching up with them. There had been a lot of driving for Ray as we had also gone to the north west corner of Victoria to visit a couple I was friendly with before coming back to Bendigo.
     
    Then came the four days of the convention which had been a busy and exciting time. Like the convention we have just held locally it was a get-together for folk from all over Australia who only see each other maybe every second year but have in common the fact that all the men had once belonged to a young men's service organisation called Apex. They had all been kicked out (retired) from Apex at 40 ( they had to leave when they turned 40) and now just treated the annual convention of Apex 40 as a get-together, a time to laugh over old memories and make or continue friendships. As soon as the convention came to an end we were heading off home and back to work.
     
    That never happened. Ray finished up being six weeks in Bendigo as he had a second stroke there on May 10th, pulmonary embolisms, stomach ulcers, arterial fibrillation etc etc. The hospital up here couldn't accept him until he was safe to travel and that took a while. I lived for six weeks in a building that had once housed trainee nurses, the rent was cheap and I was one block away from where Ray was so I spent most days with him. I crochetted enough squares to make up three rugs when I got home so my fingers were busy while I watched him sleep of an afternoon. I asked questions, compared treatments, watched the physios and learned as much as I could about strokes and what it meant to be a stroke survivor.
     
    Our children flew down to be with us, each for a few days, even friends from four hours away visited and we had an especially good friend who was also the local Bishop of the Anglican church who together with his wife were our siupport team. Thank the Lord for such good steady friends. And we had support from the Apex40 club, the hospital staff and people who came into our lifes just for a short time but filled a much needed role as friends and counsellors. I had other wives also staying at the ex-nurses home to talk to at the end of each long day.
     
    After six weeks I drove home and Ray flew home by air ambulance and was taken to Woy Woy Rehabilitation Unit where he spent the next three months. I count as the anniversary of my caregiver role the 3rd of September 1999, the day he came home and became my full-time responsibility. Most of you, if you have read these blogs have heard most of the rest of our journey as I refer frequently in posts and blogs to what has been happening in our lives over the ten years. It has not been an easy life for either of us but it has had it's joys as well as it's sorrows. On the whole I am glad we have managed to stay together for the 40 years of our married life. It is, after all, our only reality.
     
    Now we feel as if Ray has well outlasted the early predictions from doctors at the time of his stroke, three to five years they said when I asked how long they saw his future as being. He has surpassed that prediction by many years. Of course he has had a lot of other medical problems too. A broken hip in 2000, the result of a fall upon slate tiles, the 2001 and 2005 strokes, the broken pelvis in 2007. He has also had many short periods in hospital. Ray has many medical conditions, some caused by the diabetes which he learned about in 1990 after his first stroke. Because of his lack of mobility and his inability to do more than exercises for flexibility and partly because of increasing years he now has osteoporosis. And since the 2005 stroke vascular dementia also. But he is still able to walk short distance, to talk and sustain interaction with old friends, to go out in the car with me, to socialise to a certain extent and to enjoy life. Ray ignores what he cannot fix and I think that is what stops him from being depressed.
     
    The changes stroke made to our lives were radical. I had to leave work, first of all to be Ray's cheerleader, then to be his full-time caregiver. I had to give up my voluntary work as a part-time unpaid pastoral assistant at a local Anglican church. I had exercised a ministry there after completing my Diploma in Theology in 1995, it was my aim to be a hospital chaplain but that never eventuated. I did three days paid work in the public service and two days unpaid work in the parish. Ray had worked as a maintenance carpenter in a mental hospital for fourteen years so had a lot of holiday pay, sick leave etc coming to him and did not officially retire until December 1999. But he went back only to hand over his keys, a very sad day for him. He had survived the 1990 stroke and gone back to work after six months of rehabilitation etc but this time the retirement was permanent.
     
    I have reached an acceptance of how my life is as a caregiver. I still vent about the things I cannot fix. Unlike Ray I am never content to ignore the things that bug me. I work hard to look after Ray. And of course as I still have my mum, who I visit twice a week. It is seven years now since she went into a dementia specific lodge - Nareen Lodge. It is a good place, run by a staff of good people. Mum's care has been excellent. She has falls but then she cannot be wrapped in cotton wool or any other substance that would cushion her falls. The internal walking track which she walks many times each day gives her an illusion of freedom and she is well looked after and safe there.
     
    I don't know what the future holds for us and frankly I don't want to know. I have enough trouble just doing life day by day. I will go on caring for Ray as long as I can. I pray I stay well so that I can do so. We said : till death us do part and in my opinion that is all there is to it. But that is today's feeling and tomorrow's may be different.
  9. swilkinson
    WARNING!! THIS IS A VENT!!
     
    I can't believe that so much has happened in a couple of days since Ray got home. We have had a fall, some arguments, lots of "accidents" and this evening an argument about shaving!! Ray has used an electric shaver solely for the past two years and when I asked him to use it tonight he said: "I don't use this. I shave at the sink with a razor." That was really out of left field so I dropped the subject and will get Jeff to shave him tomorrow morning. Safer than giving me an ordinary razor when I am mad with him!
     
    The respite is great, a time to relax, unwind, enjoy just being me for a while. The down-side is the homecoming and the settling back in. I have blogged on this a lot so you have heard my views on this. Some of you have experienced it when the one you care for comes home from hospital after a short stay and drives you mad for the first week or so until you get into a pattern of working together again. That is if you can still work together.
     
    Ray has always had what we here call "wife deafness". That means if someone else asks Ray to do something, fine, he does it. If I ask he either argues the point or simply refuses to do it, or ignores whatever I have said and does it his way. This leads to quite a few difficulties. He won't do his exercises for me. Luckily he does them with the shower nurses but on Tuesday we had a little person we only have occassionally. Ray explained to her he doesn't have to do the exercises today and when I insisted did them very half-heartedly. He doesn't seem to know that he is doing them to maintain flexibility, he sees it as a chore, an imposition that he really can't be bothered with. I am envious of those whose survivor makes good progress because they try so hard. Ray has lacked the motivation to do the exercises all along and will not do them unless he is with a physio or with others he is trying to impress.
     
    Because Ray had not done much exercise since he went into respite his legs have got much weaker. The fall was on the front path outside on his way to the Daycare bus on Tuesday morning. He was with a new worker who was obviously too far back as he didn't even attempt to slow Ray's fall. Ray was really shaken by the fall so the bus driver suggested they do the rest of the run and come back for Ray which is what they did. Forty minutes later when they returned he was feeling okay and I had patched up all the cuts, grazes and abrasions and he was able to go to Daycare. I think the incident shook me up as much as it did him. I always ask myself: was this a simple stumble, a precursor to another stroke, a fit or TIA? If Ray seems unhurt or unaffected I just feel glad and let things be.
     
    I am reminding Ray of what he has to do minute by minute again. It is very tiring and I know it is the dementia and not Ray but oh heck! I wish it would end. He was like a sulky child today. Nothing seemed to please him so I let him spend most of the day on the verandah. I had Trevor home so he made Ray his morning cup of tea and gave him some cookies as a treat. Even when I feel he doesn't "deserve" a treat I give him one - it is the disease remember? I keep tellling myself that over an over.
     
    I was nearly an hour late going into my caregiver chat today. I had a visit from a woman my age who for a long time was my best friend . We became best friends at eight years of age. We lived opposite one another and went to school together. We became friends and our parents became friends, a happy co-incidence. She was an after thought after three boys and so her parents used to take me out with her as a companion. Surprisingly two girls were a lot less trouble than one. Her father used to call us "the terrible twins".
     
    We have been in and out of touch many times over the years as she and her family and me and mine have moved from place to place. We each raised three kids two boys and a girl, though my girl was first and hers last. When Ray and I came back here 26 years ago I hoped that I would be able to get back in touch with school friends and friends from my childhood but in many cases that didn't happen. Most of my girlhood friends were married by then and a lot had moved away and she was no longer living here. But it is wonderful when we see each other even for a few hours, so many shared memories. She was on the way north after visiting one of her children. She expressed the hope that we will see each other more regularly...we can only hope eh?
     
    Despite being so late it was good that some caregivers were still in chat and I was able to go on chatting for quite a while. Thank you Bonnie for being my substitute and being so understanding. No, I do not like letting people down, particularly other caregivers but sometimes I need to put people in real time in the picture too. And visits from old friends are a rare event in our lives now. I was reminded of all the people we once associated with, for now I see that is what they were, fellow workers, colleagues, business associates rather than friends. I need to hang on to the old friends I have here in real time as that number is diminishing. Making new friends as you all know is harder when your partner has physical and mental disabilities.
     
    I will go on looking after Ray for as long as I can. I have been on a couple of good Dementia sites lately and read of the anxiety and sleepless nights that occur when the time to place loved ones in full-time care is imminent. I don't know what I will be like when that happens. I shudder at the thought. And yet a small voice of wisdom, a tiny voice in the back of my mind, reminds me I am just one person, not superwoman and need to be aware that one day Ray will need more care than I can give him. I "know" it with my mind but my heart threatens to break at the mere thought.
     
    I have a lot of sympathy for all those who care for someone, partner, child or parent with severe disabilities. I have a lot of respect for their sacrifice and committment. I am not sure how I would handle a severely disabled spouse or child. Ray at this stage is still fairly easy to handle, he is still mobile, still walks, talks etc. He is back off thickened liquids now and seems to be able to manage most foods as long as they are cut up into tiny pieces. Life could be a lot more difficult I know so don't know why I can't just "appreciate" that fact. But I am human eh?
  10. swilkinson
    Ray is back home again. I went and picked him up this morning. The nurse who signed off on his respite said he had been no trouble and they had loved having him. I got her to look at the "incident report" and she said he hadn't had any falls etc. No good asking Ray as he would always say "no". But he seems okay. Of course by lunchtime he had already had one change as he didn't make it all the way to the toilet because of the walk in from the verandah which is I guess longer than he has been walking from the chair to the ensuite in his bedroom. That is possibly the only execise he has had in the past fortnight. Only time will tell if this will be our "new normal".
     
    It was good to have last week to myslf. I didn't go to the movies or have a swim. I did sleep a little later some mornings and I actually got to sleep right through the night which is rare when Ray is home. I didn't do all I had planned with the house and garden as we did have some rainy days. I am reluctant to say it but the dust bunnies are still happy in their burrows under the bed in the spare room. I did do some thinking about life, read a couple of novels, did some extra phoning of friends and tidied out some drawers. I always think a whole week to myself will somehow translate into a sparkling immaculate house but that doesn't happen. C'est la vie!
     
    I have been back on chat and posting again. My computer is down again, it was only a patched job anyway and so I have been using Trev's again. He has been looking for work, he did a friends carpets last week and this weekend did some welding on his old truck. He is quite a jack-of-all trades now, he can fix computers, do some mechanical work, a bit of building etc. I hope he can find a job that uses some of those skills. It is a falling job market here though. No real reason as our stock market is recovering and we are still all buying goods,eating etc. I hope this depresssion/recession, whatever it is doesn't last too long.
     
    I sat in church yesterday and listened to the sermon, I was hearing it for the second time as it was the same as Saturday night's sermon. In the Saturday night service we renew our baptismal vows and light the "new fire". It is service with a lot of singing and yet is very prayerful too. It is the last of the reflective services. Easter Sunday service is all alleluias and bouncy music. On Saturday night with the candles burning etc it was good to just sit and relax and listen. It is not something I get to do often, just listen, as mostly I have to be aware of other things happening about the place.
     
    The theme of the sermon was unfinished business and it was pointed out that in the Scriptures there are a lot of stories without endings. In many cases we don't know what happened, we can draw conclusions and make a guess or we can just accept that life is full of uneasy endings and events where we will have to be content not to know what happened next. We were reminded that in our own lives we have many regrets about all those things we ought to have done and didn't, all our good intentions that somehow didn't turn out the way we had planned, all the tasks we had had to walk away from before they were completed. I could relate a lot to that. How many plans I have made that I have never been able to put into action because our circumstances have changed. That is where I am a lot of the time now.
     
    The conclusion was that as human beings we have to learn to live with the unsatisfactory endings and the unfinished business in our lives. That we have to live with our current realities and we don't live in happy-ever-after-land. It may be difficult not to be abe to control events and turn everything into a happy ending but it is part and parcel of the life we lead. I do so agree with that, I felt as if the sermon was being preached for me. One day I might even let it sink so far into my sub-conscience that I actually do see that my controlling life isn't an option here. It is again about accepting life as it is and doing the best I can within it's limitations.
     
    I thought that in my later years I would be a little old lady who was full of wit and wisdom, who had most of life sussed out. It seems I, like everyone else, am still on a learning curve. I don't have all the answers and I have yet to hear all the questions. Ten years of caregiving has taken me down a path less travelled but it is by no means a path that leads to a quiet, safe place. It is a road full of potholes and sharp corners and steep rises and still full of unexplored dead ends that I will take and have to find my way through.
     
    This has been a lovely quiet week and I know the ones ahead now Ray is home will not be. I know he comes back home with all the problems he went with plus some which will eventuate as we go along. If God doesn't give me more than I can handle I am okay. I can handle a lot of the problems as I go along, sometimes after a time of self-pity and a feeling of helplessness, and I often seek a "happy-ever-after" ending where I know one is not possible. But I come from tough stock and eventually work things out. Like others here I just wish from time to time that trials came less frequently and more of Ray's and my life was lived in the pleasant valleys of prosperity and peace.
     
     
  11. swilkinson
    Usually when Ray is in respite care I see him once a week. I went yesterday to see if he had sufficient clothes etc and he was just fine. He has a nice large airy room and after he and I had talked a while we had coffee at "his" table and the three ladies he shares it with are permanent residents and seemed really nice. Trev and I went again today as we changed back off daylight saving last night and I was worried that his watch would be wrong. It was fine, he said the nurse changed it at breakfast time. So we had a short visit and then went off to the shops. One of the nurses there turns out to be a friend from a long time ago as her daughter was a friend of my daughter, that is a nice coincidence as I know she will give Ray some extra attention now.
     
    My five days away turned out to be in a period of rain, nine inches over four days to be precise. I am sure we would have been able to see the dolphins on the Dolphin Watch boat trip if it had not been pouring with rain, the koala spotting walk was cancelled - due to rain etc. There was still a couple of excursions I enjoyed like the Fighter Plane Museum at Williamtown and the half day in Hunter Valley Gardens when it threatened to rain but didn't. The roses were somewhat bowed down but must have been magnificent last week and I enjoyed the Chinese, Japanese, formal english, storybook gardens etc. Of the 8 miles of pathways I probably did about half so I got my exercise in too. I was bus marshall on Thursday and everyone obediently got back on the bus when asked them to do so. I was pleased with them all and thanked them for their co-operation.
     
    In the evenings we had entertainment - my team didn't win the trivia so missed out on the Easter eggs but did come up with a lot of silly answers that kept us laughing. I took part in one of those "how to host a Murder" plays and after round three was convinced I was the murderess but luckily someone else had an early opportunity to kill the victim and I came through with my reputation intact. Whew! It was set at a high school reunion and as our weekend theme had been "Happy Days" I had a similar outfit as the valedictorian of Rock'n'Roley High attending the fifth year reunion. Everyone said it was "type casting" and I didn't get a Logie but we did get a standing ovation ( well they were all off to get another drink I think) so it was worth all the stress.
     
    We had a mixture of ages on board for our post-rort tour, and people from all over Australia plus a party of six from New Zealand but there were not a lot of complaints. Most agreed that the food was excellent and the only real disappointment was the rain. I just enjoyed being away from home for a few days. The company of other women is something I miss, also just that kind of conversation that flows and eddies around a lot of subjects over a couple of hours. You only get that with people you know. Being alone wasn't a problem as I got invitd to sit at various tables so got to know a lot of other people better than I had been able to in previous years when we had attended the conventions but my main focus was on Ray. It was great to be "Sue alone" for a change. But it was so good to get home to my own bed!
     
    The next week will be some outside activities and some clean-up work at home. If it is fine I will tackle the yard, if it isn't I will tackle the cupboards. There should still be some lovely mild sunny days before the autumn is over and winter begins but it is nice to get the winter clothes out and aired and to find replacements for those that look as if they have seen better days. We are inclined to cling on to our "old favourites" and go out looking less than our best so as soon as winter clothes are in the shops I am going to get Ray a couple of new outfits and sneak them into the back of his wardrobe so he can wear them to church etc this winter. He sees buying him new outfits as wasting money so better to do it before he comes home.
     
    It is this time of the year when I reflect on how I spend my time. I tell people I have a lot of choices, housework, yardwork, handicrafts, reading etc. Sure there is a lot of work that has to be done, some of which I hate - washing bathroom walls for instance. But along with what must be done there is pleasant tasks, like being out in the garden and sitting on the verandah with Ray in my breaks. I really don't mind shopping as long as we are not rushed and can take it leisurely as there is a social side to it too as we see some of our pleasant friends and acquaintances and stop and say "hello". With a bit of time management we get to have either coffee or lunch out at least once a week. And for me there is computer time and dropping by to visit with you all here.
     
    Last night I spoke to Mum's step-brother in Queensland for the first time in seven years. I rang his ex-wife and he is staying with her for a while as he had an accident on his boat, damaged some muscles and ligaments in his legs and now is staying with her at least while he is convalescing. At this stage although he has had surgery he is still wheel-chair bound. I am glad they are back together, at least for a while as I are quite fond of them both.They are both in their seventies and I know their kids think they are better together than living apart. Us aging parents can be quite a worry to our children - ask mine!
     
    Time to finish this time of reflection as I am invited over to our son and daughter-in-laws for dinner. I'll have my fix of playing with my three grandkids. Nice!
     
  12. swilkinson

    singing with Polly

    By swilkinson,

    Ray and I are just back from Camp Breakaway. The weather was glorious though it has just started raining here. The food, assistance and accommodation was the usual high standard. I realised how lucky we are to be able to go there. For me it is a place where I am encouraged to go for a walk, have a nap, sit in the sun and read without having to look after Ray. I am encouraged to leave Ray in the carers company, he is wheeled around, fed, showered, undresssed and put to bed. I slept in the same room and looked after him at night but through the day he was not my responsibility. For Ray it is like being among old friends. He has been going there at least twice a year for eight years. The staff are trained to look after people with disabilities and love their work, whatever happens they take it in their stride.
     
    There were four new couples at this camp. Some of the caregivers were so weary and worn down when they arrived and laughing and smiling by the second day as they had their burdens and responsibilities temporarily lifted from them. We had some imput from couple of local providers on additional services we might be entitled to and for one woman that reduced her to tears. We all know what it feels like to be carrying an unbearable load and then find there IS help out there. No-one wants to put their survivor/cared for person into permanent care until it is absolutely neessary and any help from outside gives us a chance to have a breather and maybe go on with the job a little longer and in a lighter mood. I know how much I appreciate the three hour respite on Fridays, my ME time.
     
    The entertainment was good as usual. The duo last night actually sang songs from the '80's not the '40's so I found myself singing along with Polly and her partner, they sang songs made popular by Elvis, Rod Stewart, Roger Whittaker, songs from my generation. The oldies didn't always know the words but enjoyed the freshness of their routine. Barry's mother confided to me that he had been in a wheelchair for 8 years after a vehicle accident so was happy to give his talents for free to bring happiness to others. What a fine attitude. Polly was pretty and sang well and looked glamourous and our menfolk enjoyed that as well.
     
    We have a busy weekend ahead starting at 3pm today when we go down to the resort down the road and help welcome people to our Apex40 convention. There will be 150 plus visitors from all states and a small contingent from New Zealand here for the weekend. Ray and I haven't done much during the planning process but will enjoy the company, the entertainment and I am especially looking forward to the cruise on Brisbane Waters on Sunday. It is ages since I have been out on the water, something that used to be a regular part of our lives, so fingers crossed that it is fine and sunny then. The members of the Apex40 club we belong to have worked hard to make this convention a sucess so I hope it is glitch free and a wonderful time is had by all.
     
    Our Tori is doing her first camp out with Cubs this weekend so that is another reason I am hoping it will be fine and sunny. She is looking forward to being away from her Mum and Dad overnight. She is growing again so is full of energy and a weekend of running around will do her good. The little boys will miss her though. One of the aides at Camp Breakaway has a little daughter the same age and she is also just becoming a Cub. What a wonderful experience it will be for both of them. Our kids were Cubs, Scouts and Venturers ( the boys) Guide and Venturer ( Shirley) and they learned a lot from their time in the Scouting movement. As parents we also got to camp out on the family camps and I think Ray's love of camping came from there.
     
    And so... a happy time, a busy social life, something to look forward to...sometimes life is good.
  13. swilkinson
    I got up early this morning and have been sitting here reading back over my diary entries from this time last year. I don't think anything major has changed but there have been a few subtle changes. Ray is more vague as time goes by, doesn't know what day it is , doesn't remember what he did yesterday or even sometimes this morning or even an hour ago.
     
    I guess our autumn ( fall) with the falling leaves, declining plant growth and slowly cooling days brings on all kinds of reflective thoughts. Here, facing a winter that from all reports may be a harsh one also means we are facing days of being shut in, unable to go out and about in our usual ways. I know this will bring more feelings of isolation with it. In real-life friends from our past hardly contact now, I can understand that as we have less and less in common . I know for some people the thought that dementia is somehow a "mental" illness does keep them away and it is out of sight, out of mind. I find my church friends and friends from the associations we have belonged to for many years still are okay with us.
     
    Ray does very little of his own initiative, he no longer clears his dishes off the table or remembers to bring in cutlery, he was still doing that this time last year. He does very little of his own volition beside eat and sleep. He does go out with me but it is a step-by-step process to get him ready and a lot of extra work for me to get him out of the house but it is worth it as it fights off depression for both of us. He still sits on the verandah for periods of time doing word puzzles or staring into space but he spends more time in front of the television than he used to and is less active. The shower nurse still guides him through some gentle exercise three times a week so that helps to keep him flexible.
     
    We went to the kidney specialist today and the report was mostly good but his iron is down significantly so we are doubling the iron tablets and adding vitamin C tablets. He is on so many medications and I am sure some of them conflict. But on the whole his health is good. He doesn't have much energy some days though and I find I am helping him up out of his chair now. Ray has had some more periods of incontinence but that has decreased in the last two weeks. Possibly the cooler weather is helping his kidneys to cope better. I love our autumn, cool days, cold nights. The days are so beautiful now.
     
    I have had computer troubles the last four weeks so have caught up on some odd jobs. Being without the internet has left me feeling cut off from all the wonderful friends I have made in my cyber world. The support I receive from this site makes a real difference to how I cope. Without the support of family and friends it would be a really lonely life. I realise a lot of our friends are more distant now, after all they have been "supporting" us for ten years almost. That is a real long time, and of course will not change radically ( I hope) in the foreseeable future. We as a couple will always need some level of support, emotional, spiritual, and sometimes physical. We are not needy, we just need a helping hand from time to time.
     
    Trev has been talking of applying for jobs away from here. There is a high level of unemployment now on the coast and as employers know their jobs are much in demand wages are lower too. I think he thought it would be simply a matter of applying for a few jobs and he would be back in work again. Not so it seems with so many others looking for work too. I am sure he will get something in the end and if he has to move away..so be it. But if he does move away that will be one of our supports gone. Am I being selfish in hoping he will find something local that satisfies him?
     
    I am preparing for a busy couple of weeks. Ray and I go to Camp Breakaway next week, Tuesday till Friday for the Carer's Camp, I sent the money away yesterday. I enjoyed it last year and have my fingers crossed that it will not rain. The weekend that follows is our Apex40 convention, it is local this year so Ray and I can join in some of the activities. It will be good to catch up with the Bendigo mob as we were at their convention almost ten years ago when Ray had the stroke that changed our lives on 19th April, 1999.
     
    The following week Ray is going into care for two weeks and I am going on a five day tour with some of the conventioneers. I know it has all come at once which is difficult but I will have a week when I come back when I will be able to set up the house and yard for winter. Of course there was the hard choice of going on the five day trip or going to our daughter in Cairns but I need to do other things that don't involve family for a change. And Ray and I are going to Cairns to spend ten days with them in July. The weather will be cold here by then but still lovely and warm in the tropical north.
     
    I am back on the computer but will not be back in chat for a couple of weeks due to these other activities. I hope to catch up with you all soon and be a "regular" again. God bless all of you in your struggles to make some sense of your life when you or someone you love is living with stroke, dementia or other life altering illness.
  14. swilkinson
    Sorry, sorry, sorry everyone for missing my caregiver chat again today. I "thought" my internet was fixed...but it only lasted about four hours! So I was off the air again. This morning ( your Tuesday night) the telco cut us off so they could re-attach the land line at the exchange, which they said was the last check they could make. So hopefully the line is as clear as a bell all the way through now! I certainly hope so as I have been four weeks without a reliable internet. I have used the computer internet cafe booth at our shopping centre ( 20 mins for $2), visited friends and used their computers etc. Now I hope mine is up and running and here to stay.
     
    On the homefront I have just been maintaining Ray as best I can. I know caregivers will understand that statement. It means I feed him healthy food, make sure he does his exercises, has his medication on time, has adequate rest etc. We did bloodworks last Tuesday but won't have the results till next Monday. He seems okay, his "accidents" have decreased somewhat, he has only had one fall in a fortnight and his arms are also free of bandages as all his previous bumps and grazes are now healed. He is perhaps increasingly vague about what he has done, where he has been etc as well as what day it is so I guess it is the dementia advancing again.
     
    I have been really missing the internet as it has become one of my chief sources of support. My cyberfriends here and on Messenger mean a lot to me. I can't phone a real-time friend at 6.30am or 11.30pm but with a little bit of luck I can find someone on line to talk to. Talking to someone suspends for a time the loneliness of being a caregiver with limited access to the outside world. The times Ray likes to sleep in other circumstances would have been my visiting time, my chatting time, my support-seeking time. So coming onto the internet fulfils some of the needs I have in that area.
     
    I am again considering what I do with my time. Like everyone else who is "retired" I have housework and yardwork to do, I have the extras to do that are involved in looking after Ray's needs, on some days that fills the days. But what do you do with weekends? On weekends there are no doctor's appointments, no regular committments apart from church on Sunday mornings. In the old pre-stroke days we were busy, that was the yardwork time and there were BBQs here and visits with family friends etc. Once upon a time we even had weekends away! Now on Saturday afternoon when Ray is napping I feel "hollow". Suddenly it seems as if I am in transition again, worried about the things we have lost or missed out on, feeling lost and lonely. I am trying to figure out how to banish such feelings. I want to be content in whatever situation I find myself in. Why is that so hard to do?
     
    My mum has been chatty on the last two visits. She speaks "babble", although she probaby thinks she is speaking words there are just sounds, nothing I can actually understand. I wish I could understand what she is saying. I look at her face and try to read her body language so I know if I should say "there, there" or "wow, isn't that wonderful?". Mostly her face is unreadable but sometimes she seems to nod or look as if what I have said is the right answer. I guess a few people who have a survivor with aphasia have the same puzzle to solve. How I hate what Alzheimers has taken from Mum, and by extension from those of us who love her. More research money will be needed if we of the next generation are not to go the same way.
     
    Our fall is lovely now the humidity has disappeared at last. The days start off cloudy but when the cloud burns off the days are sunny and warm with a gentle breeze. We have daylight saving only for another two weeks so I will miss it when it goes. I get up to a cool house after the night has cooled it down, gradually through the day it warms up again. Last night we came out from our Lions dinner meeting which is held in a Surf Lifesaving Clubhouse, so right on the beachfront, to find a cold easterly wind blowing. Before we walked the few yards to the car Ray was complaining of the cold. So from now on I will tak a jacket for him so I can go to the car and get it if the temperature drops suddenly. Of course in winter he is icy cold down his left, stroke-affected side.
     
    I am just finalising a two week break from the end of March. I am sending Ray to a different "residential care centre" which is an 80 bed centre with high and low level beds in the same area. I am not sure how it is going to work out as he has become used to Nareen Gardens but it is increasingly hard to find a respite bed for him there. I need to have a break, I think more so lately as I seem to tire much more easily than I used to do. The fact that he gets out of bed at least once, sometimes twice during the night and wants help to get to the toilet and back probably doesn't help. I am not getting enough continuous sleep. I guess eventually I will simply get used to the change of routine. That is what generally happens when there are changes.
     
    After I take the break I am hoping to feel more relaxed and to rebalance my life again. I have a few little problems to be looked at here. I did ring around to see if I could find a tradesman interested in doing some little jobs but so far no luck. You would think with all this talk of recession etc people would welcome small fill-in jobs but that doesn't seem to be the case. Ah well, time will go by anyway. I MUST learn to go with the flow.
     
     
     
     
     
     
  15. swilkinson

    fixed?...maybe

    By swilkinson,

    I had another call from my telco's complaint's department to say my problem has been fixed...but every ten minutes or so the lines drop out and the computer freezes and an error message comes up...so how "fixed" is my problem? I will just keep logging the drop-outs and hope that on Monday I can get onto another operator in the complaints department and...complain!
     
    Today has been a day of frustration, maybe some Fridays are like that in whatever situation you find yourself in. There always seems to be a list of leftover jobs from previous days and no more time to do them in than usual. So today I wanted to spend my three hours off in about eight different ways. That is a silly thng to do I know, so no wonder I just did three of them - three hours doesn't take long to go. Ray had his regular carer Jeff and I know he is fine with him. Tuesday's shower nurse never turned up, so I rang and complained about that. It has been a week of complaining.
     
    I had to leave the dementia support group just as the mentor was getting into an interesting subject. Most dementia patients eventually get a curved neck, guess there is a technical term for that, and spend most of the time looking at the ground. This in part leads to not being able to concentrate, recognize visitors etc. So he was telling us to arrange pillows so that the head is back and the eyes can then focus forward. This does not apply to Ray but it does to my mum who I visit twice a week. Not that she is bed-bound as yet.
     
    Today Mum was a pitiful sight as she had had another fall and really banged her head, so she had a big bruise on her forehead and two black eyes. She mostly slept while I was there. I was so sad to see her like that. Every time it happens I think I should never have put her in there, I should take her home etc. But I know that with Ray as well I am never going to be able to do that. It is no-one's fault that she has the falls. She still walks round and round the corridors of the dementia lodge where she lives, that is her whole life now. She eats a little, sleeps a little and walks and walks and walks.
     
    I am trying to get a fix on some of the problems I have to see if some of them are solvable. Like most people I have a lot of outstanding maintenance jobs so I need to find a handyman to do some of them. This is no easy task, to find someone who is reliable and will know what they are doing. I need a few odd plumbing jobs done, a person to give a quote for a pergola where my flower house is currently falling down and someone to fix my front screened windows. The front part of the house was last renovated 25 years ago so is due for some repairs. This is when I miss the carpenter/handyman who used to be my husband Ray prior to the strokes. He was so good with tools, I wouldn't have needed to look elsewhere for a "Mr Fixit" I had one on the premises.
     
    I still find it hard even after nearly ten years to do the jobs that Ray once did. He used to do all our repairs, mowed the lawn, did the heavy gardening, did all the odd jobs. This slowed down a bit after the 1990 stroke as he was left with fatigue, more so some times than others. He did go back to work for 8 1/2 years but he slept as soon as he got home and some weekends he'd do a couple of jobs and sleep both Saturday and Sunday afternoons. But he was still our maintenance man, our lawn mower etc, it just got done a lot less frequently.
     
    I took over a lot of the chores even when I was working full-time. One of the reasons I dropped back to working only three days a week was so I had more time at home, more energy to bear the extra load. I simply don't know how anyone can look after someone who needs full-time care and work as well. It must be an astronomical job. Now of course with vascular dementia added to the mix of Ray's disabilities he needs 24 hour care. One of the reasons I now suffer from tiredness a lot of the time. I know it is just the way it is, I am explaining not complaining.
     
    There is till a tiny part of me that misses the old life and wonders what life would have been like if Ray had not had the strokes. Would we have been half-way around Australia, walking on a deserted beach in Western Australia, sitting in a pale blue ocean pool, going fishing, picking up shells? I would say so as that was one of the dreams we shared. It is the dream that half of the population of Australia subscribes to, the dream of looking around our own beautiful land. And then maybe heading off shore, looking at the rest of the world, seeing all the other fascinating places featured in any travel program, the Pyramids by moonlight, the Taj Mahal etc etc. In every country there is beauty in the wonders of reef and beach and mountains and so many places exotic and faraway and we will never see them together as we'd planned.
     
    But most of all some days I just want a fairy godmother - can anyone put me in touch with one? I want to go out, dressed in my best, and have a wonderful, memorable night out, one I will remember always... I am too old to bother with a Prince Charming though...much too old, much too tired. And Ray was a divine dancer in his youth so I have been there and done that. Before I get too old I would just like one more go at the bright lights, the music, the entertainment...the sights and sounds of people having a wonderful time.
     
    But right now I would settle for my internet working.
  16. swilkinson
    Here I am, sitting at a friend's computer ( even older than mine!) writing this blog to let you know my computer is fine, Ray and I are fine but my phone line needs digging up and starting all over again. I managed to do 20 mins on a friends computer last week so was able to let Donna know I am out of action. I may be at chat this week, but it seems unlikely at this time. I'm so unhappy about all of this especially living without being able to contact all my dear friends and companions here. Whenever I ring up to ask when it will all be fixed the answer is: " we are working our way down the list". It seems during one of the storms a fortnight ago part of the network blew up and now they are re routing calls but the ADSL is a different matter. Always an excuse eh?
     
    The past week or so has been busy as usual. There is always plenty to do at our house. I can de-cobweb, de-clutter, de - whatever until the cows come home and there would still be a lot to do. The dust bunnies are forming warrens under all the furniture and I think starting their own sports channel soon! Unfortunately they won't form work gangs and share the load! The Autumn Fair at church is a fortnight away so I am increasing my output and there are piles of ribbon, lace and beads, beads, beads everywhere. And still I find time to be lonely.
     
    Ray had his three days at Camp Breakaway this past week. I spent a day catching up on little tasks, a day with my sister and a day doing some gardening. We had a lot of rain a fortnight ago and I have weeds taller than hollyhocks! So I've started doing a little at a time to get it back under control again. As the temps start to drop I should be able to spend more time in the garden. I will shift Ray's comfy chair out the back and he can do his puzzles as I work.
     
    The day with my sister was good, her husband was out at a meeting so she took me out to dinner and we had some lovely seafood. It is a real treat for me to eat out without Ray I can just sit and relax and enjoy what is happening around me for a change. It was strange sleeping in a tiny sinlge bed she uses for her grandchildren when they sleep over but I managed a night's sleep and that is what counts. Mind you I was glad to get back to my own bed again.
     
    Trev said he wasn't going to do much this week. He is looking for work and did some of that but with more places closing or downsizing as the economic climate cools I don't know how long it will take him to find a job. With his usual confidence he was sure it wouldn't take long but we all know how difficult it is once the word "recession" is spoken out loud. Our businesses have been overstretched for a while and now confidence just seems to be sliding. I guess it is a world wide problem and there will be a lot of rethinking before a solution is found. In the meantime he can always do some of the jobs that need doing at home ( how's that for wishful thinking?).
     
    I have some plans in place for a break in April when Ray will have two weeks of respite. I've also booked our Queensland flights for July, spending is supposed to be good for the economy so give me a medal eh? Ray can travel better in the cooler weather. Of course I am not really sure he wants to, he is getting to the stage where just staying home and going through his usual routine is challenging enough for him. The Camp Breakaway breaks are good and he seems to be okay with going into respite when I need a break but when I suggest holiday destinations and outings he doesn't seem keen now.
     
    So think of me with the cobweb broom in one hand and the birch broom in the other gaining on the dust bunnies and making the spider population homeless. Imagine me in the jungle up the back listening to the rustle in the grass and wondering how you tell a snake from all the harmless sun lizards that frolic in the sun up there. Seems as if there is always something to do, even if coming onto Strokenet is not an option.
  17. swilkinson
    I've been on this site going on for four years now. In those years I have of course grown four years older, I'm now past sixty, Ray and I had our fortieth wedding anniversary, he is now sixty six. We are not the young folk we used to be, nothing like we were in 1990 when he had his first stroke at aged forty eight. And yet, in a way, a huge part of our lives got left back there. We are part of the lost generation, those who for one reason or another were unable to fulfill their dreams, who had their hopes dashed, who never did all the things on the wish list. It was not our fault, not something we deliberately did, it was a cardio vascular accident, we call it "stroke".
     
    I hope now at sixty one I am older and wiser but I very much doubt it. Today I read a few posts with that plaintive echo: "why me? it isn't fair, I want my old life back." and so do I, so indeed do I. But what would that life be like now? Better than this one or just different from it? It is too far back to know. Of course I can go back to the major strokes in 1999, that is less than ten years ago. But to the 1990 stroke, the beginning of all that trouble? No I don't think so.
     
    So how do we deal with all that wishful thinking, all that wondering about what might have been if the stroke didn't happen? How do we cope with the disappointments, the lost dreams...maybe even that sense of failure? Because I know that is one of my feelings some days, a sense of failure. Like the failure to thrive in babies it somehow stunts my growth. I need to get rid of that feeling. I really do. And become the kind of person who lives in the present, deals with life as it comes and enjoys her life. What is the use of moping around, it doesn't achieve anything.
     
    There are people here who do make the most of every day, I am thinking here of Asha (achandra) and hostallan. They personify for me the power of going with the flow, of getting on with life just the way it is. I admire their fortitude and their attitude. I try to be more like that day by day. Not just stoic but cheerfully doing the best I can with each day, and doing a good deed if I can.
     
    It is not always easy to find a good deed to do but it might be as simple as calling out a cheery greeting to my neighbour, telling a shop assistant "thank you, and you have a nice day yourself too" or just giving way to someone else, on a street corner, in a shopping centre car park, wherever I can. To try to be a blessing to someone rather than just another person who obstructs them in some way. We all know what we like in others so that is the way we need to be ourselves.
     
    I am feeding my neighbour's cat again. My neighbour is away on another trip, partly business, partly pleasure he says. He often goes away for a few days, a couple of weeks, sometimes more. His daughter has gone back to her mother, she is a teen and there was some problems so that was decided on as the best solution. He had always been the one who stayed at home and now he doesn't have to so he is enjoying his freedom. The cat and I don't get on but he needs his food so he has to tolerate me. And I've notched up another good deed.
     
    The sun is back so my "rain depression" has lifted again and I feel like doing some things around the place. Today Trev and I pulled out some ivy that was choking some shrubs and gave them a cut back. It was quite warm as there is now a lot of moisture in the air and the humidity is back. The floods are now in northern New South Wales as well as Queensland but nowhere near here thank goodness. The Victorian bushfires are now mostly under control. Life is coming back to near normal again.
     
    But our lives will never be normal will they? There will always be the extra work caused by the strokes Ray had and all the restrictions that go with poor mobility and poor swallowing and all the other deficits he has. It makes a lot of work for me and because of that I feel it so much harder to achieve anything. But maybe the actual achievements are not that important you know. We really do need to set our own goals and make them realistic ones. There is no use us thinking that if we worked, if we earned more, had more, achieved more, we would be happy. I guess we could simply decide to be happy with what we have, doing what we can, achieving what? a life well lived perhaps?
     
    So tomorrow is another day to practice loving my neighbour as myself. It is another day of going through life as cheerfully as I can. If it has some surprises I will work on dealing with them without building up a head of steam and getting flustered if I can. Flow, here I come.
  18. swilkinson

    friendship threads

    By swilkinson,

    Ray and I have been very social lately. We go through periods of having invitations and some of them we accept. It does depend on the time and the place, for instance morning is better than afternoon, lunch out is better than dinner out. The venue is important too as Ray doesn't manage stairs but if there is a lift that will fit him, me and the wheelchair, no problem. This does mean some places are just not accessible to us.
     
    This past couple of weeks we have been out to both regular happenings, like our Apex 40 club dinner and our Lions Club dinner, and to a couple of parties. One was an engagement party for a friend's daughter. So Saturday afternoon we were out at Peats Ridge, where the hot air was blowing off the bush fires in a nearby gully,that started about the time we got there. There was no real danger as the wind was actually blowing the fire in the opposite direction to where we were, it was only afterwards I realised we would have been in real danger if the wind had changed. It was noisy with television crews in helicopters hovering overhead trying to film the fire and the men rushing off to monitor where the smoke was coming from to make sure we were all safe and didn't need to evacuate but we still had a lovely afternoon.
     
    By co-incidence four people I knew, from four different periods of my life, were there as guests so I spent most of the afternoon catching up on their lives. One of Ray's cousins was also there so they caught up too. Most people who know Ray are starting to see the changes in him now, in a strange way a few more seem kinder, maybe it is because they are aging themselves and maybe a little more appreciative of the frailties of the human mind and body. Pity we don't go through that about 21 so we are nicer people for the rest of our lives.
     
    Today we went to a lunch put on at Camp Breakaway by one of the organizations that use it. The lunch was funded by a government grant and was aimed at getting more carers to accept assistance from this organization. It is hard sometimes to get people to swallow their pride and take up offers of assistance. I know it must be harder for some than others. A couple of the care recipients were from good backgrounds, one a retired police inspector, another a lawyer, but they both had dementia and wives that were finding it hard to maintain both caring for them and keeping up with lifestyle changes. I think we get invited to things like this because of my wide range of experiences with welfare situations both from my background of chaplaincy and working for Social Security and my experience as a caregiver to my parents and to Ray. I can appeal to people on several different levels.
     
    Again I found a couple of people at the lunch that I had known from past association. I am finding more and more that a person from one part of my life will suddenly appear in another part of my life. It is not so much that it is "a small world" as we say but sometimes as if we somehow trail friendship threads that from time to time pull us back together again. Or that is my theory anyway...lol. Perhaps sometimes there is an attraction as though people find us again because of some wisdom we have that they now need. Of course some would call that God's guidance.
     
    Like everyone else we have been watching the trauma of the bush fires that have claimed so many lives in Victoria. It is more than 800 miles south of us but I guess it is galvanizing the nation. Many good points have come out of the news coverage and discussions some of which are....to look at how we keep ourselves and our loved ones safe, to think about what emergency plans we have in place, and maybe even to keep closer tabs on the ones we love. So sad to find someone you love by looking through a list of victims of a bush fire instead of finding their name in the phone book and giving them a ring as happened to one estranged father.
     
    The big events of life certainly give us food for thought. I don't want to go into all I have been thinking here but I am aware of a whole new set of thoughts particularly about our mortality and making the right moves while we still have the time and energy. It really is too late when we are in a hospital bed with tubes coming out in all directions to wonder what we could have done better.
     
    In a bush fire money and wealth meant nothing, having an expensive home didn't save people from the fires, intelligence often failed them too. I guess you could put who lived and who died down to making decisions that either lined up or didn't to take them to safety or leave them in peril. Are there things we could have done to prevent this tragedy, or strategies we can put into place to prevent it happening again? It is certainly something to reflect upon, as a nation and as an individual.
  19. swilkinson

    confined spaces

    By swilkinson,

    I went to my dementia support group today. Although they meet twice a month I only usually get to one a month, too much else to do with my Fridays after all I still have Mum to visit, shopping to do etc in the three hours I have a minder for Ray. I was pleased I went today though as one of the assistants to the mentor was doing a kind of revision on the skills needed for caregivers who help to manage the life of someone with dementia. Like Ray some of the care recipients have also had strokes so we are all on the same kind of journey. All trying to do our best to keep the one we care for alive and happy. And that is no easy job.
     
    On the way out I passed the access point to the sewer, we used to call them "man hole covers" I don't know what they are called now. This one had a sign across it, it read "confined space" and I thought how apt that was as a description of a caregiver's life, of my life. My life is a confined space. Sure it can be a happy, sunny space some days, but it is also a hard-to-take, grindingly boring space other days. My world is limited by the tasks I have to do and the time I can use for myself, by the time I spend looking after Ray and the time I can spend away from Ray,doing the things I want to do.
     
    The tasks I do here are mostly those of a normal stay-at-home housewife plus the extra jobs a person without a man around the house would have to do and then there are the jobs associated with looking after a semi-invalid. I guess caregiving tasks vary, with each caregiver doing tasks from an endless list of possibilities. Whoever you are caregiver for it is always over and above the work done by others who have a healthy spouse. There are always extra jobs to do here, extra washing, extra cleaning, food preparation etc. I have to do special shopping and with all the doctor's appointments etc it seems to entail more driving too.
     
    I am not complaining, this is not a vent. It was for a moment a recognition of what my life is like. And I think that is healthy, to know what life is like and to just get on with it the way it is. You all know how much time I spend trying to change things, reason things through etc. Today I just acknowledged something and moved on.
     
    This afternoon I had a visitor from another site I belong to, she lives about two hours drive from here and we met last year too. We talked over the way we handle things with the dementia, I can use present examples of how I deal with Ray and past examples of how I used to deal with Mum. She looks after her Mum who has dementia and also used to look after her Dad who died from a heart attack late last year. As we talked I thought how different we are, she is much younger, has a much different lifestyle, different values and ideals. What we have in common is being a caregiver to someone with dementia and that is enough to make us as close as sisters. Amazing what that isolating disease can do in bringing us so close. So we may be confined but we need not be alone or lonely.
     
    I'm glad I have this site and a couple of others where I have made some cyber friends who spill over into other parts of my real life, like Babs (BabsZ) and Eddie coming here from Oklahoma and my friend today coming from the other side of Newcastle. It is good we can make new friends especially as many of the people we once thought of as friends can have seemed to have abandoned us. I say "seemed to" as I know in some instances I am to blame. It is easy when you are a caregiver to become self-absorbed, locked in your own busy little world.
     
    I ring old friends and they say "what have you and Ray been doing?" and I have to think real carefully about how much of my life I am able to share with them. Some of them are sensitive little petals and mention of Ray's BMs, his problems with bleeding etc could offend their sensibilities, so I give them the refined, civilized version and then of course I feel they don't understand. Well how would they when I have been less than honest with them? So some of the walls of the "confined space" I have built myself.
     
    Tomorrow is a meeting of the WAGS group, the parent body of the Scallywags' Men's Stroke Support group Ray goes to on Fridays once a fortnight and then on to the engagement party of the daughter of friends of ours. We have been friends with them since before we were all married, so a long time. This is the only adopted child and she has had her wayward years so it is nice she is thinking of settling down at last. As we are old friends from way back in the past it will be interesting to see who else is there that Ray will remember. Sometimes when we meet someone I have to say: "look who it is, it is George, you remember George don't you, you and George you...." and give an instance of something they did together. I feel like an idiot doing it but it seems to work and gives them something to talk about.
     
    Just trying to keep the walls of the confined space as far apart as possible.
  20. swilkinson
    More summer storms and I had phone problems for another three days. I didn't get to chat, I couldn't check my emails. I could just scream. We only had ten days of services before another storm took the phone line out. I do have a surge protector etc so it isn't supposed to happen. I get so mad when it all goes down especially because of our situation. I do have a cell phone for emergencies but people do worry if they don't see me on line or can't contact me when they know I am home.
     
    We have been busy the last week or so with visitors and events. On Australia Day we went to a family lunch at my sister's place when forty or so people turned up. We were there and our boys and our Wyoming grandchildren,Tori, Alex and Oliver, Pam was working (well someone has to...lol). All my sister's children were there and her grandchildren and spouses and some of the spouses parents, so it was a big family gathering.
     
    It had been so hot on Saturday, over 100 degrees (41 our temp) so we were lucky that by Monday the temperature had dropped back to a mild, warm, sunny day or we would have all baked. As it was it was a lovely day with all the cousins big and small having a great time together and the oldies chatting on as oldies do. There was a lot of food and fun as the kids had rides in a trailer attached to my brother-in-law's ride-on mower and the kids enjoyed a slippery slope game on a large sheet of plastic covered in detergent and drenched in water. There were lots of shrieks and cheers during that game but as it go late into the afternoon also some tears from the littlest ones. We all went home very tired.
     
    But that was just the first party that day as we also went to a party next door with fifteen people from the neighbourhood gathered on Brett's back area with barbecued lamb and salads and wonderful desserts. I had to take the bread so that was simple and easy for me to do. Ray went home about 9pm but with Trev's permission I stayed on for a couple of hours more. I loved the warm summer night out under the stars, it was nice to meet some new people and the conversation was good.
     
    On Tuesday I took advantage of a "three free sessions" coupon to my local Curves. I had never been there before so after speeding Ray on his way to Daycare I went and bought some joggers and went down to be assessed. Now I am short and fairly wide and far from athletic. I know I have some strength as I can pick Ray up off the floor when I need to. So one sweet young thing assessed me and another offered to show me the circuit. There is equipment for bending and stretching your body in all directions so Ann demonstrated and then I copied what she did. I managed to do one circuit, fifteen minutes worth.
     
    Next it was my turn to lead and she followed. I got most of the movements right, she just corrected my position. So around we went again. My heart rate was up a little now and I can say I was wondering if I was doing okay. Occasionally Ann said "good" or "well done" to encourage me. Then we got back to a machine that enables you to do squats. She said: "try that again as fast as you can" so I did and she said: "wow". We finished the circuit and she showed me how to bend and stretch to cool down again. Finally I was finished. We went back to the girl who had done the assessment and Ann said: "Sue has good abs and GREAT glutes." So there, a hidden asset I didn't know I had...lol. And I still have two free sessions to go!
     
    This time of the year we have our visitors as they come and go visiting family in the summer holiday season. Yesterday Trev picked up my cousin Marilyn and her husband who are over from England visiting her daughter. They came to visit us last year when they stayed with their daughter in Sydney. ( I wrote a blog on last years visit called "Just like her mother"). The visit was so much nicer this time around as we were like old friends catching up on what had happened in our families Today my sister came to lunch and we talked all afternoon. It was a great time. Marilyn works as a volunteer at her local hospital teaching stroke survivors simple cooking as part of their rehab so she was pleased to be able to spend some time with Ray too. Last year he was away at Camp Breakaway when they came. And we had a long walk on one of my favourite beaches this morning so that was a bonus too.
     
    Before Marilyn got here we had some other visitors, two couple who had been promising to drop by for a while finally made it over for afternoon tea. It was so nice to just sit and chat. It doesn't happen a lot and I am always so thrilled when it does. It IS so good to catch up with old friends. One of the men is having treatment for lung cancer and that has given him and his wife a new appreciation of what it is to be a survivor and to be a caregiver. That fellow feeling despite the differences in the diseases has made a new bond between us.
     
    AND Ray and I received today an invitation to a friend's daughter's engagement party and as it is on a Saturday afternoon we are able to go! Another pleasant event to look forward to.
     
    I just love these times when life smiles on us again. However gloomy life is we know there are always some brighter days ahead.
  21. swilkinson

    old sins

    By swilkinson,

    No, this blog is not a confession, it is an observation. To illustrate a conclusion I have just come to about why we are often not getting the support we think we deserve. I am reminded of a proverb: "Old sins have long shadows".
     
    In chat this morning the caregivers were talking about lack of family support and how one family member will often influence others in the family to keep them from supporting us. I am drawing a conclusion without much evidence here but bear with me. Before I went into chat I had a phone call from one friend talking about another who has once again fallen out with all her family members and is now saying how mean they all are. What she gets out of this beats me, but she seems to enjoy being the wronged party, the "poor thing" and sucks up a lot of attention that she would otherwise not get. I'm afraid I do the "dear me, you poor thing" less and less well these days. I know a lot of people have bigger problems and are expereincing real sorrow and I know from reading here how much REAL pain there is in the world.
     
    If we want to know why something is happening we often have to look at the past in the light of what we know now and somewhere back there will be the reason for what is happening now. The shining memories of good deeds, the shadows of bad. And sometimes, without wondering why, we are still influenced by some mis-deed that makes us think we are picked-on, less well-thought of than others, or in my case often thought little of. It usually has to do with something unresolved in our past. You think you are free of this? Think again.
     
    For a period of my life I called myself Sue Who? This came about because I worked in a place with a few Sues and something I had done got credited to another Sue, resulting in some embarrassment when she got an award she had not earned. Eventually it all got straightened out but the award ceremony was not repeated, in fact I never saw a certificate with my name on it. I guess it was not something others wanted to remember. Strangely from that incident I concluded that my work was not worth recognizing. Silly I know now, but that is the way it seemed at the time.
     
    Ray is not supported by his family. I know in a way this is because one family member once received a lot of support and immediately the crisis was over moved quickly interstate and started a new life. There was never a thank you or an expression of gratitude for what others had done. I think in some way this led the other family members to conclude that helping someone was not worth while. And so they each live like lone satellites floating in space, each family unit unconnected to the others, each concerned only with the welfare of their own descendants.
     
    My family taught me to help others, to be a strong person, to look after family members but also friends and neighbours too. This in a way was because we were a migrant family and needed to give and receive support among people who were not blood kin. And so I ran messages in my neighborhood, Mum gave the men haircuts in exchange for eggs or vegetables, Dad lent a neighbor a hand erecting the frame on a house and the man and his friends in their turn helped Dad etc. Not only were we neighbors but often much more than that, we became friends.
     
    Helping others without thinking of a reward is not completely selfless. I have got a lot out of life by being community minded and belonging to church groups and other organizations that I could see made a difference in people's lives. And I knew those letters of thanks we received were down to the collective effort of people like me - people who want to make a difference. I know we get called "do gooders" and other less flattering names but in a crisis it is to such organizations that we all go to get help.
     
    Here on Strokenet we extend the hand of friendship, share our experiences and give support to strangers who sometimes, somewhere through the process, become friends. We start out ourselves feeling friendless and unsupported, we find new strength through the support others show us, then we in turn go on to give support and strength to others. I know that in not what happens in every case but it is the ideal.
     
    I saw an obituary in the paper today, of a man we once called a friend and was reminded of a family scandal in that family that had scattered the family members. Each child's family remained unaware of their relationship, unable to be the caring cousins and kin they should have been. In reading further sadly the "donations to the cancer research foundation" told the ending to that story. I wish at some stage they could have forgotten past hurts and got back together. Maybe now the ones that remain will do that.
     
    We don't live in a perfect world, we are not perfect people but surely, in a tough situation, we can put some of our silly little differences aside and support each other?
  22. swilkinson

    a difficult ten days

    By swilkinson,

    When you think things cannot get worse they usually do. I think it was a build up from the period before Christmas. I had so great an expectation and although I was prepared to put in a lot of work to make Christmas Day a well run, happy day I just went over the top somewhere along the line. Afterwards I fell into a slowed-down state where nothing much was happening and I didn't particularly care. Whatever it was I was trying to achieve, it hadn't brought any sort of feeling of success or happiness as I had expected and I experienced a big let-down. I felt as if I was having a melt-down.
     
    Hold on, this is not like me, good ol' Susie Superwoman, the girl who can jump high piles of laundry in a single bound while juggling six eggs and a skillet on the way to making breakfast. But everyone has those down days too and I have to accept that I do too. The constant care and attention that Ray needs really wears me out. The incontinence is a big part of that, piles of washing, day in, day out, a lot of bed changing, floor washing, becomes too much of a workload. It is like the Chinese water torture, only one drop of water at a time but it wears down stone and little by little it seems to be getting the better of me.
     
    Then life changed again, my friend Beryl's cancer got suddenly worse and I snatched what time I could to be with her in her last days. I guess that jolted me back into reality again. I have nothing to feel sorry for myself about really when I have my health as compared with a dear friend who is nearing the end of her life. What a very sad week it was as all who loved her watched her lose her final battle. It really is sobering to see death even once removed.
     
    I hope you all went on with chat as usual last Tuesday night. To add to my woes our telephone line was out of order for ten days. I think someone must have dug up the cable and quickly reburied it as it took the technicians days to find the break and longer to fix it. I did have a telephone line but it sounded like the caller was gargling under water with a mouthful of marbles. And because of the poor sound quality I could not pick up the internet. Tonight, for the first time, I am back on. But as it was patched, not replaced I don't know how long it will last. It was aweful to be out of communications with all of you. It really added to my feelings of isolation and self-pity.
     
    In the end I was making phone calls in which I could hear maybe one word in three. I made calls to those folk from our old church who would want to know of Beryl's death, funeral arrangements etc. In desperation I even used my mobile to make some of the calls. But today when there was a large crowd at her funeral all that seemed worth the hassles.
     
    Beryl was a lovely person. Poorly educated due to childhood illness - what we know now as a series of PFOs - which blighted her childhood and teen years she attended school only on and off. She didn't have the series of operation to fix them until she was 32 but she grew into a loving, kindly person and has been my good friend for many years. I will really miss her. I did the eulogy today and although I cried a lot last night as I wrote it it was good to recall many of our good times together. As a person who had had years of illness she could relate to Ray, and as a person who had cared for her parents in their later years she could also relate to me as a carer. Her loving support was priceless to me.
     
    I am hoping now that things get better, that life gets back on an even keel and I start to enjoy life again. Maybe I have been walking through the valley of the shadow of death again...we all do that from time to time as those we care for age and die, or succumb to illness, or find their own unhappiness too much for them. But if we are to expect support from others then we need to be prepared to give support too, to others in their hour of need.
     
    So if the phone lines hang together, if my computer defies the odds and keeps on going, if the temps stay below 100 degrees and we slip happily through the hottest days of summer, we will surely come out onto the sunny side of life once more and leave that dark valley behind us. Wish us well with our struggles and hope this year is a better one than the last.
  23. swilkinson
    Hi everyone, I am feeling sad and lonely and blue and a lot of other things today. It is the big let down season after Christmas and New Year is over and before "real life" starts again. It is the time when you clean up the house, throw away the wrapping paper, find a spot for the presents you got and go back to doing mundane chores.
     
    I have been having some trouble in relating to the people here lately. Don't get me wrong, I love Strokenet and all the wonderful people I have met here. I just wonder if we are on the same wave length at the moment. I have found a new site run by the UK Alzheimers Association called Talking Point and have been reading there. I think now that Ray's dementia is more of a problem than his stroke deficits so I need to know how to deal with the dementia.
     
    With dementia you don't get better, you don't get stronger, you don't get recovery. Dementia needs to be managed, by the caregiver, as he/she is the one dealing with the strange behaviour and by any people helping the caregiver. There needs to be routine, rest, calm and regular meals, medication etc. Dementia patients past a certain stage need a lot of direction, a lot of attention and minimum fuss and I think that is where Ray is now.
     
    I had the break of two weeks but it wasn't a rest as I went right on doing all the things I usually do. My fault as I thought if I worked in the mornings and rested in the afternoons for a while that would be the same as going away for a while. Of course it wasn't, I was still getting meals, doing housework and with the Christmas season coming up doing extra cleaning jobs and shopping, shopping, shopping, shopping. I was very proud of all I achieved but of course it came at a price - brown out.
     
    Brown-out is a term used here to signify that time before a power black-out when the lights flick on and off, there is low energy and you can't exactly do anything. It gives you a chance to get the emergency power system going if you have one and get out the candles but nothing more. You can't actually do anything, there isn't enough voltage. And that is a problem if it goes on too long. No-one fixes a system that is still working just a little bit.
     
    I am feeling unsupported. In real life here I have a lot of people calling on me. As an ex-telephone counseller people who know me and are desperate for answers say: "ring Sue, it's better than nothing" and so they do. One friend recently was so hysterical on the phone that I hung up twice before I realised who it was, screaming and crying at the same time doesn't make for easy communications. Her mother is dying, of lung disease, this is complicated by the fact that she has dementia and the medical staff can't cope with that. The answer to my friend is to stay by her mothers side 24 hours a day. Oh yeah. And so she is exhausted physically and mentally. Honestly I can't help in that situation. Even sitting and listening to her on the phone is not much help.
     
    Ray has increasing incontinence now and we are having disrupted nights as I am changing the sheets half way through the nights often two or three nights in a row. I can't understand why this is suddenly happening as there doesn't seem to be any changes in medication, food intake, anything that I can see as causing this. Maybe he has a low grade infection of some kind but he seems fine until dinner time and then it starts. Is it the dementia? I don't know. I am just hoping it goes away again.
     
    I have only so much to give. I need support myself and that isn't available at the moment as my dementia support group that I look on as support for me is in recess. There is a bit of fighting going on in Ray's stroke support group so that is only hobbling along at the moment. I seem to have to call on all my inner resources to keep from going into a black hole. Maybe I need an anti-depressant for myself? I will go to the doctor in a week or two and discuss that.
     
    This is a bit of a vent but it is how I feel right now. That's how life is sometimes, not going well all the time. It doesn't mean I can't cope, just that I am coping at about 30% of how I usually do. Miss Pollyanna seems to have gone on summer holidays and left Miss Grumpy in her place. Thanks if you read this and are feeling some sympathy. I know you all have such kind hearts. But sometimes what I need is someone to put strong arms around me and give me a hug. In real time. And that isn't happening right now.
  24. swilkinson

    tomorrow

    By swilkinson,

    'Don't worry about the world coming to an end today...it's already tomorrow in Australia '
     
    (Charles Schultz)
     
    It is strange how much time we waste worrying about tomorrow - not necessarily the day after today - but all those days ahead of us still shrouded in mystery. I am one of the worst offenders as I am always worrying about what is to come, sometimes to the extent of spoiling my enjoyment of today. So one of my New Years resolutions will be: ENJOY TODAY.
     
    Today is Tuesday but not craft day as everything is in recess until the second week in January. It is also not Lions dinner tonight - same reason. So after the shower nurse left I took Ray to visit Mum in her Dementia Lodge. She was sleepy today, apparently all the residents are after extra visitors came to the Lodge for Christmas and also last weekend as some family members made their annual pilgrimage to see Mum or Dad who is in the Lodge as part of their annual holiday trip back to the coast to join up with the remaining family in the familiar old places.
     
    All the residents, I am told, are confused when unfamiliar faces and voices are around although people like me who come regularly just blend into the background. Also their routine breaks down as the volunteer groups are also off on their annual summer pilgrimage to friends and family and so no singers, no-one playing the organ or piano, no-one playing games or bringing in the pets as therapy dogs, just the silence and the boredom and shapeless day after shapeless day. Which is fine for those who are content to sit in a comfy chair and snooze but not so good for those who like to have their days filled with activities.
     
    We left Mum and visited Ray's friend Claude and he caught us up with what he has been doing. He left the hostel on Christmas morning and went to friends for Christmas Day. The hostel allows people leave for up to 60 days per year to go wherever they want to go. I guess if you are able to go away for too long you don't really need to be there. That is why at that level you can still enjoy the company of family and friends whenever someone is able to pick you up and take you the places you need to go. I keep telling Ray it is not a prison, it is just a place where people who need extra care, more than can be provided by the person they live with, go to keep safe and well and enjoy a few extra years. Don't know if I have him convinced as yet, but I am working on it.
     
    After spending some time with Claude we went over to the shopping centre and did some shopping. It was crowded, noisy with tourists, people aged from nought to ninety and more, but we managed. I always find some quiet spot for us to enjoy a cold drink, we always meet up with old friends and have a chat, we often this time of the year see people we haven't seen for a while, like we did today when we bumped into a couple who used to be involved in Scouts when our kids were young. It occupied twenty minutes or so catching up on their news.
     
    This afternoon Ray is snoozing on his bed and I am here typing away. Trev has just come home from work, with a few bits and pieces from a stop at the shops, some veggie plants as he is experimenting with what will grow here right now and we just had a chat about his day and whether or not he is getting Friday off etc. He says he'll have a cold drink and may spend some time on his computer.
     
    So why am I telling you all this? Because if you had asked me yesterday what was going to happen tomorrow I couldn't have told you all this.
     
    But on the downside I got an email to say an acquaintance ( and email pal) lost her husband to cancer and dementia on Christmas Eve and her son just sent me the news, and in a phone call about ten minutes ago another friend's daughter told me her mum is back in hospital again, for a pacemaker operation this time. I guess every day will be a good news/bad news day.....
     
     
     
  25. swilkinson

    my plastic dinosaur

    By swilkinson,

    MERRY CHRISTMAS TO ALL AND A HAPPY NEW YEAR TO COME.
     
    Well Christmas Day is past. All that shopping, cleaning, worrying that: "Will this one like this or that one like that?" is over for another year. Thank goodness. I love Christmas but the build up to it drives me crazy. I think this year everyone was pleased with their gifts and that makes life pleasanter. I hate that sigh that some people give when you give them their present or when they roll their eyes as if to say; "What IS this?" None of that happened this year.
     
    This year we had the 18month old Oliver and 2 1/2 year old Alex enjoying Christmas at a fast and furious pace. We cried: "No Alex, don't Oliver" to no avail as they did what little boys do - run riot. The presents got the paper torn off them before the receiver had a chance to unwrap them, they found the food before we got to them etc. It made for a very highly charged Christmas Day but we survived it and are all still friends and next year they will be one year older....
     
    Our minister at church started his sermon with a story: "I was talking to a member of the congregation last year and he said; "Christmas isn't the same any more, you spend all that time shopping and then get really silly presents yourself. I don't think the food is as good, the bon bons don't contain any decent jokes and after lunch no-one wants to spend time with you watching a movie or playing board games with you." And he was just eleven!"
     
    The gist of his sermon was that we needed to remember the "gift of poverty" that comes to us every Christmas. There are many in our rich society with little food or earthly goods, who make the most of what is around them. The stable for a birthing room, imagine the smell! if you have ever been in a cattle barn you will know what I mean. And the visitors - a bunch of smelly shepherds. The kings or whatever you would call those foreign strangers, came much later.
     
    So we are called on to be poor in the sense that we treat whatever gifts we receive as a bonus. We don't exchange gifts, we give and sometimes we receive. This all makes sense if you are a mature adult ( old) like me. I spend weeks trying to get the right gift and get some really odd ones in exchange. But over the years I have used, worn or roasted in or ironed with most of them...lol.
     
    Today when I went into the dining/living room I packed most of my gifts away: a ceramic planter with cacti I put on the kitchen shelf,a Christmas plate I still have to buy a stand for, the Santa photos I put in an old frame. The step ladder Trev bought last week I have already used to fetch the decorations down from the top cupboards and the dress I chose and Ray paid for will be my party special for this summer. The northern family haven't sent their parcel yet so we wll have more to open in the future.
     
    When I sat down for breakfast my plate didn't sit straight so I moved it and there was a plastic dinosaur. I think it came out of the Christmas bon bons, but not mine as I had a lobster on a key ring. So someone had put down the dinosaur and left it behind. It gives me something to play with I guess...lol. And something to think about to. The value of the little things that amuse us and help us keep our sense of humour when the going gets tough.
     
    Ray survived Christmas Day though I think the noise was a bit hard for him to take. He had some family phone calls and we rang one brother who had been away for the day. Our daughter rang late in the evening and told us a bit about her day, it was very hot and humid there so they had hot food, cold wilting salads etc, shared with Craig's mum and brother and another couple from the church. Salvation Army Corps officers are suppose to have any corps members who are going to be alone to dine with them on Christmas Day, it's an old fashioned rule and probably not much adhered to today but another reminder they are called to help the poor.
     
    We are not poor, we have more than enough to cover our basic needs. We are rich in friends and companions on the journey including those well-wishers who will read this.
     
    Bless you all.