swilkinson

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  1. swilkinson

    quiet day

    By swilkinson,

    For a while now I have been trying to make some changes in my life. One of them is to calm life down. Now I can be a bit of a drama queen (hey! I am a woman!) and I know that stress is not good for me and worse for Ray so I am trying to de-stress us both. As Ray ages he certainly appreciates the quiet life. And if he is stressed the result shows up in his sugar readings, they sky rocket, so it is in his interest too that we live a quieter life.
     
    This resulted in me having a very quiet birthday. But it was good because that was my choice.
     
    I wondered how to make the day special and came up with a plan. I sent Ray off to Daycare as usual. Then I went down to our small shopping village and bought two large iced and filled cakes. I took them down to Mum's Dementia lodge and had them cut up for morning tea. That way I shared them with Mum and all her companions. And it was worth it to see how much they all appreciated the cream and jam filled treats! The expressions on the faces as they licked their lips was amazing! It is so much better to give than to receive when you can receive so much from giving!
     
    The rest of the day was the usual shopping and I visited a girlfriend for the last hour before Ray came home. I did have a lot of greetings on the phone and by email (thank you, thank you) and a few cards in my letter box so it was a good day. And a friend who used to be a florist left a beautifully boxed flower arrangement on my doorstep!
     
    I finished the day by taking Ray out to dinner. I have posted a new caregiver's hint too as I have found a way of making dining out easier for Ray. It is hard when he has so many issues to enjoy a meal out. BUT we have actually had three meals out recently and all have gone well.
     
    We had Steve and Pam and the two little ones over on Sunday night and just had takeout (Asha's suggestion) and so not a lot of tidying up afterwards. Alex's new party trick is to stand and smile. He actually stood for over a minute at one stage so it will not be long before he is walking now. Which is good as Pam is expecting the next baby mid-August. He is a beautiful boy now, big cheeky grin and a little gurgly laugh. Tori is a great BIG SISTER and plays with him nicely when asked to do so. She is still Granma's best girl too.
     
    We are going out to craft this afternoon and Lions Club dinner tonight so I should get some more greetings, then our next door neighbour is taking us out to coffee after I finish here with you all on chat so the blessings continue. It is good to have friends, in real time and in cyberspace and I do give thanks for all of you.
     
    Thanks to all who sent me greetings and personal messages. You are the BEST!
  2. swilkinson
    Another week ended and a calm, quiet one at that. Nothing much to tell you. The weather is fine, the nights colder, the washing dried today. Life is very mundane but I would be delighted to keep it that way for a few weeks. That way I can build up my strength for the next "critical incident". I wish there would never be one but life has a habit of not letting me rest for long.
     
    Today I went to the Dementia support group which meets first and third Fridays. We had two short films, the first of a woman's struggle with early dementia, very well done but it was not what was said but the husband's expression as he fought NOT to say what he felt that fascinated me. The second film was of a daughter's struggle to accept her mother's dementia, so good, different in parts to what I went through with Mum but so much of it I could relate to. Both films were shot over a period of time so you could see a gradual progress in the disease. These insights do help me in coping with Mum and with Ray.
     
    Ray and I went to Apex40 dinner at a nice restaurant at The Entrance last night. They are so supportive of him, not all of course but a core group, so it is relaxing to have dinner and a chat afterwards.I wish we had more friends who were free to go out to dinner with us. It makes life seem normal for a change. Today I also had lunch out, just a sandwich and coffee at a local Bakery with a friend who we supported through her husband's journey through strokes and dementia and now she is helping me to cope. I guess that is what life is about for me at present, giving support and learning to deal with life as it happens. Our mentor at Dementia group urges us to stay in the present moment and at last I am becoming comfortable with that.
     
    Monday is my birthday, I will be 60. The kids wanted me to arrange for a few friends to come to have a bit of a celebration but I asked that there not be a dinner or a party, I am not comfortable dining with Ray in a setting I can't control at present. Going out with the Lions or Apex40 group we sit in a corner, close to where I can get Ray to the toilet etc if I need to quickly. He does have some swallowing and coughing issues and is occassionally sick, not the kind of thing I want to happen if I am the feted birthday girl so :"thanks, but no thanks" has to be the reply for this year. Hopefully there will be other birthdays ahead. Doesn't stop you all from sending me greetings though.
     
    So that is it, the news of the week. The calm quiet week.
     
    (((Hugs))) to all from Sue
     
    This is the weekly email I send out to a list of friends. I usually get three or four replies so I know some people care enough to sit down and write back. Of the others some reply once a month, once in three months etc. I know, life is busy and it is not "all about me" and I do need well-wishers out here in the real world. And of course some of the recipients do have troubles of their own that I am aware of. So I send them a private email or letter as well.
     
    It is good to count our blessings, but it is also good to look at our lives in a truthful and honest way. Part of staying with the moment has to be about that too. I can't cope with something I am not admitting is happening to me. Or to Ray. It is good to have a place to write this down so I can read it and see if it all makes sense. Or if it is just the ravings of a person with a strange view of the world.
  3. swilkinson
    "Like a gold prospector you must resign yourself to picking up a lot of sand from which you will later patiently wash out a few minute particles of gold." (no author) That is a quote from the end of a post that Aleanna made recently. I must say I was impressed with it. It is so true of my life. Sometimes I feel as if the sand dunes of Arabia are on my doorstep, blown here by that particular wind that blows trouble to your door. And yes, if I sift enough I may find that elusive good thing but it will take a bit of doing.
     
    But I also know that I have little to complain about in the face of the starving children of Africa and South America that feature on our tv, sifting through tons of garbage for a morsel of food or a little metal to recycle. How can their government, rich philanthropists, charities etc let them live like that? I cannot do much about it but feel so rich by comparison. And I remember what it feels like to be cold, hungry, to feel unsafe and even unloved, we have all been there at some time or other.
     
    But today I had a good day in what overall has been a good week. Not an outstanding week though it has had some outstanding things in it. For instance our dear friend who came up and painted the wooden gables at the end of our house so that the peeling paint would not let the water in. He also cut down some branches off a tree that was starting to be a nuisance when the wind blew and also dug one of the drains that had overflowed last time it rained and caused some minor flooding under my house. I as a woman am inclined to make a scrape across the soil to divert water. He dug a decent size trench. Now there is a particle of gold if ever I saw one.
     
    And today I bought a couple of reasonably priced blouses at our church fashion parade. I showed two to Ray and asked which one he liked and he said: "Whichever one you want, or you could have both." well, no need to tell me a second time. He even reached for his wallet the dear soul, as once he would have done to buy me a present. Made my eyes fill up with tears, it has been ages since I have seen him do that.
     
    So there is gold in my life. The gold of good friends, the gold of people, like those who read this, who do truly understand. There is such relief in knowing that this road we travel we do not travel alone.
     
    I spoke to my northern family tonight and they will be spending a couple of days with us the last week in June AND Shirley will be spending three days with us at the beginning of December too when she comes down to Sydney for a women's conference leaving Craig and the children in Cairns. That means some of those mother and daughters moments I hope, the sort you store up and treasure. I do so miss her and her family. And the thought of them being here soon is so GOOD. Good as gold.
     
    And Ray's general health has been good this week and his behaviour moderate, and his deficiencies under control. So that makes me give thanks too.
     
    I am not a Pollyanna as a rule, quite the opposite sometimes but I do think it is essential to post about the good times as well as the bad. And honesty can be confronting sometimes but other times it does show that nugget of pure gold. Sure we all have our down moments, but we have our up times too. And those where the road is smooth and runs in pleasant places.
     
    Hope your week has had some golden moments too.
     
  4. swilkinson

    survival genes

    By swilkinson,

    I took Ray to his neurologist today, he goes every six months to get his Reminyl script and for the neuro to see how he is, he has been Ray's neuro since he came back to the local hospital after his first stroke 17 years ago. It is not unusual to go in for an appointment and have a strange conversation. The neurologist is very easy to talk to. He does clinical trials and a lot of lecturing and stroke education seminars both for lay people and medical professionals. He tends to talk about whatever is on his mind right now, bouncing ideas off the patients to get an idea about how non-professionals think he says.
     
    The neuro said that there is a lot of research being done on what causes predisposition to illness or certain diseases. It is all very interesting, says he, but we should also be looking at the genes that help people survive. This is because a lot of people, like Ray, have illnesses that one would think would be enough to kill them and yet they survive. So he also thinks there must be in some people a pre-disposition to survival, so if we find these survival genes, the ones that make us tough, we may have some more answers.
     
    I found that a very interesting theory because as he said the stroke that is intensive enough to kill one person will have a lesser effect on another. This can be regardless of age, fitness, other illness or pre-conditions. There are some people who have a "toughness" that seems to fly in the face of reason and medical probability. Most of us put it down to having strong minded ancestors, the kind of pioneers that could walk miles with bullet wounds, axe wounds, fevers and snake bite and through whatever kind of weather and conditions nature threw at them. So is the survival gene some kind of gene left over from the pioneering days?
     
    We have a good friend staying a few days, he is actually the godfather of our youngest son. We have known him for over thirty years, he lives about 300 miles away and came up for a few days as he said to "do a few little jobs for Sue." So he is painting the gables at the end of our house which are wooden and were starting to peel and flake off paint. As a house painter he saw something he could do for us that we could not do for ourselves. How blessed are we when friends see a need and do the job without being asked to? Mighty blessed.
     
    I have been chatting with people on Dementianet, mostly late evening my time. This is a site for dementia carers so as they often have to put the one they are caring for, be it spouse or parent, to bed before they feel free to sit down for a while 9.30pm on seems an ideal time. I am enjoying talking to another set of people who are struggling with the same problems as we are here but from a slightly different perspective. This will not take away from my chat hosting here as it is a very different time slot but I feel in a way what I learn at each site I can use on the other, for the benefit of others.
     
    The rest of the week is a faster pace as we have several things on each day, tomorrow is my chat day and I have other things to do as usual. On Thursday the "biggest Morning Tea" which is a fundraiser for Cancer research will be held in a nearby park by our Lions Club and I want to help out there. I haven't done any service work recently and it is about time I gave a hand when and where I am able to. We have physiotherapy for Ray that afternoon. On Friday I want to go clothes shopping for Mum so she has plenty of warm winter clothes to wear. A lot of her clothes are really faded and no longer warm as the automatic, industrial strength washing machines used by the nursing homes seem very hard on fabrics.
     
    Mum is a survivor too. She had a tough childhood. Her father was away from home a lot and she lost her mother at 16, her father remarried at 17 and Mum had to make her own way in the world. She lived in London during the Blitz, working in a munitions factory as her contribution to the War Effort. She had her husband ( my Dad) missing in action, then taken to Germany as a prisoner-of-war. After the war they started a new life but realised that they wanted more say in how they lived. They came to Australia with two small children, my sister and me, and made a fresh start. It was not pioneering but it was still a hard life, starting again from scratch. Good survival genes there, in both of them.
     
    So I hope as you read this you will take heart, thinking of all you have come through to get yourself to this part of your life. We all have genes that pre-dispose us to all kinds of nasties, strokes and heart attacks among them. But hopefully we also have survival genes that will allow us to be overcomers.
  5. swilkinson
    I have just finished chat, taken the laundry and hung it on the line as it's a sunny day, set up some soup for lunch. Phew! there is so much to do. But I don't really feel like doing anything much. I just want to sit down and sort a few things out in my mind. So if you are not into that read no further.
     
    I'm in a bit of a quandary again. I have just joined another board, this one is about dementia and is based in Australia so I thought it would be good to speak to the locals. Compared to Strokenet the site is in its very early stages. The chat board is there but as it is not organised it is rare that two people (out of maybe 200) are on at the same time. I have been sending emails to the Webmaster and recommended she come here and have a look. I know that sooner or later I am going to be asked if I want to be a monitor or host or whatever they are going to call it and I don't know if I want that kind of responsibility.
     
    I came here looking for some answers on strokes as Ray had just had his fifth, that was roughly two years ago. I resisted chat for a while but realised that there would be a benefit in talking to others in real time. Even if the subject matter isn't serious, as it really isn't most of the time in caregiver chat, the support network is worth the time and effort. Far from exposing me to crackpots as I initially thought instead I have found loving, informed men and women who are ready to give of themselves and use their experience to help others.
     
    One of the things that has really impressed me about this site is the fact that everyone is ready to post in support of others who are hurting. If you don't have a solution to the current problem it is no problem to send a hug, a welcome, a few notes on your own stroke, or your survivor's to give the newbie that feeling of having come to the right place. We are not health professionals but boy! do we have the hands on experience! And in sharing we do find a way of making something good come out of what was initially a bad situation. And also realising that there are folk much worse off than ourselves who are really struggling yet still managing to smile in the face of woe.
     
    Yesterday Ray and I went to see his Rehab specialist from his hospital stay. Due to road work it took us an hour to do what should have been a half hour run. Then I had to pay for two hours of parking which I knew I wouldn't use, push Ray up a slope that wasn't designed for wheelchairs, wait for the Doc to call us, and the interview took ten minutes and could have been done over the phone! Guess we have all had those experiences eh? And so back in the car, back through the roadworks, s-l-o-w-l-y home.
     
    One thing I did find out is that my expected estimate of when Ray should be back to full fitness was WAY out. I was told 12-16 weeks. Specialist said 6-8 MONTHS. You have to double everything as far as retuning the body goes after a stroke it seems, and also take into consideration that in the case of bed rest (Ray had eleven days in bed initially) the fitness loss has to be made up too. So he thought 6 months was the soonest I would feel that Ray had regained what he had lost. ( insert swear word here to express my extreme displeasure at that prospect).
     
    So... holidays are out of the question, too much danger of disorientation and lack of balance resulting in falls and further hospitalisation. The disorientation is more from the vascular dementia than it is from the strokes and of course that will increase too as time goes by, so to do what we want to do as soon as possible has been my aim. I really do not want to wait six months before we venture out of this area again. Of course we do live in a beautiful part of the world and tourists pay thousands to come here for holidays but you all know you never get a real break if you stay at home at the time and caregiving is a real 24/7/365 job for me.
     
    So... no sense in getting bitter about this and as usual acceptance is some way down the track. So I will try and think of a few projects to keep my mind focussed so the time passes quickly. That is always the best thing to do. Because time passes anyway whatever we do. And tomorrow could be the best day of the rest of our lives..
  6. swilkinson

    now I know!

    By swilkinson,

    Now I know just why Ray loves Camp Breakaway. They treat their guests like royalty, nothing is too much trouble, everything comes to them, food, drinks, entertainment. There is a personal aide or a shower nurse if you need one. There is a nurse on staff and they will get you to the hospital if that is where you need to go. One of the older gentlemen did go to the nearest hospital to have heart pains checked out, he was okay and told to see his doctor when he got home today. It is all covered by the Federal Health and Ageing Department and a small co-pay from the guests and it is a lovely experience.
     
    Although Ray usually goes on a small bus I drove him up on Tuesday morning, about a 45 minute drive north of here. I thought I would use the car while I was there but never did. The furthest I went from the camp was down to the waterfront a walk of half a mile or so. The camp is made up little wooden cabins, two side by side and there are 16 of them. There is a big hall which is kitchen, dining room, lounge room and entertainment area. The meals are good, well cooked and served by the staff. There was entertainment in the afternoon and evenings too. There is also an area with A-frame cabins which is used as a youth camp and some larger family cabins which are used for families with disabled children who need a holiday.
     
    The accommodation isn't five star but is adequate. There are rooms with twin beds (Ray's was like a hospital bed), and a purpose built shower and a small deck on the front which we used the first day to sit in the autumn sunlight and relax. I also sat out there when Ray was asleep except for yesterday when it was raining and cold. Then I went up to the hall and watched an English comedienne who played the piano and told jokes and had the oldies in stitches with her act. All the entertainment was good but my favourite was a small shy man who was electrifying in his rendition of Elvis songs.
     
    The first person to greet us was Ray's usual carer who calls him "Buddy" and had some tales to tell about some of Ray's previous visits. The tales were pretty mild but Ray looked at me to see if I was taking it all in and when I laughed he relaxed and smiled himself. He loves to be made a fuss of and his carer had brought some aftershave and a few little extras to make him feel good. We had another carer at night who slept next door with the single occupant there, a much older stroke survivor who really did need the 24 hour care provided. The night carer had his wife and daughter come in and stay for a while so we could see how much his now four year old daughter had grown. This really pleased the older ladies who fussed over her.
     
    All the staff are both paid and volunteer workers, except for a few who are just volunteers. The payment only applies to the showering and personal care which they can claim for, the serving of meals etc they do as volunteers. Some come back at night to put the olds to bed. I loved the shower girls, all young and chirpy, all brisk and cheerful, who brought Ray out of the shower pink and clean and with a big smile. He would do exactly what they asked, no ifs or buts. I loved the large, huggy ladies who stayed through the day and made sure we all got tea or coffee and cake in the afternoon, who also sat and talked one on one to the survivors while their carers had a nap or went for a walk.
     
    Is Camp Breakaway for me? Probably not, the age range was from late 60's to one dear old chap on our table who was 98 and as talkative as a jackdaw. The nearest person to my age was a woman who has a complex form of Parkinson's who was probably late 60's. We had some good conversations, her speech was very slow and slurred but I could see she was really enjoying our chats together.
     
    But Ray loves everything about Camp Breakaway, he enjoys the company, the entertainment, the meals and the company of the carers who he sees as a band of angels from heaven. If the only way he can go is with me, I'll go again. If he can go alone I will go back to enjoying my three days off at home.
  7. swilkinson
    When we were kids we used to play a lot of games which involved running away from a "catcher". One was called "Whichever way the wind blows". I think it had started with a story about children running way. From my recollection you stood in four groups on what would have been the compass points, north, south, east and west. The "catcher" stood in the middle. She spun on the spot and pointed at one of the groups and that group ran away with her in hot pursuit. The one of the group who was caught then became the catcher. Why, you say, is she telling me this? I guess it is because for the last week or so I have felt as if I am standing with some one pointing a finger at me saying; "Run as fast as you can."
     
    It has been a week of shifted appointments and I managed to miss two of them. One I re-booked for a fortnight's time and the other hasn't got back to me yet. But worse still I also came home from my "time out" today and found a note to say my sister had called to take me to lunch. I felt as if I had let her down. I rang her to apologise and she wasn't a bit friendly and reminded me I had talked to her earlier in the week and should have told her about my plans then. And I guess she is right as I vaguely remember talk of her taking me out to lunch this Friday. I had forgotten that as I also had a Dementia Seminar this morning which as it happened didn't finish till almost 1pm. I guess I should have rung her and arranged to meet her away from the house. But I didn't.
     
    The Dementia Seminar was interesting as the progress of the disease was explained as well as hints on managing dementia behaviours given. I try to go to a support group once a month if I can but don't always get there so the three hours of talks and a lecture by a gerontologist put some of what happened with Mum, who is at the end stages of Alzheimers and Ray who is in the early stages of Vascular Dementia into some sort of pattern for me and that was really helpful.
     
    Dealing with the physical aspects of Ray's strokes and now the mental aspects of his dementia is difficult. Some people here might be dealing with that with an ex-alcoholic husband or someone with a family history of dementia. Having a stroke and developing dementia does not necessarily go hand-in-hand but a TBI causing brain cell loss or anything else that causes brain cell loss like multiple strokes makes it much more likely. One good thing is that with Ray's lack of mobility he can't run away from home like Mum used to do. I think instead he withdraws into his shell when the world gets too much for him.
     
    As well as all this I am going to be away from Tuesday till Friday next week as I am going to Camp Breakaway with Ray. This means I will not get my "Ray free days" instead I will get meals, board and entertainment for a low cost and still have Ray showered every day and a nurse to see to him if he needs one. I decided to do this when he was still very wobbly on his feet and I didn't know if they would take him by himself. Now I think they would have taken him anyway but decided I would still go with him and share with him in this experience. I need to get life back in perspective so hopefully a few days away from home will give me a few hours thinking time too.
     
    By the pattern of dementia we were given today life is going to be tougher in the future. It seems as if the ways we have interacted in our marriage relationship have to be put aside while I deal with the effects of the disease. It was all about maintaining the relationship, not stressing the patient etc. I know that I, as the one who still has the brain cells, have to make the concessions. That is fair enough. But is still seems to me that all of this is about giving up, sacrificing the life I would like to lead for one that is not even a shadow of that. A younger woman sitting along side of me said:"No-one understands what we are dealing with." We say that here, as caregivers and as survivors. Any neurological event, be it stroke or dementia separates us from the mainstream of life.
     
    I visited a friend today before I came home and she asked after Ray and then said something that brought tears to my eyes. "I miss him , you know, your Ray used to make me laugh with all his little stories and jokes and now I look at him and it is as if he is not really there." I have that feeling sometimes too. But I will continue to look after him for as long as I am physically able to.
  8. swilkinson

    dirt under my feet

    By swilkinson,

    It rained this afternoon so I watched a video and a couple of tv programs. I went to visit my Mum this morning in her Dementia Lodge and got her to giggle by playing one of those games where you pretend to be a spider, creeping your fingers along until they touch the hand they have on the table. The same game makes Alex laugh too. Also got her to drink her strawberry milk down too which pleased the nurses. She doesn't drink enough now and as a result has frequent UTI's which have to be treated with antibiotics.
     
    I did some shopping and yes! even bought a cheap sweater to begin the update of my wardrobe. Like some of you I hang on to my clothes two or three years longer than I should. If I have time later in the week I will attend to the sorting of my winter clothes, see what is worth keeping and bag the rest to go into the waste or to the charity shop. I'd like to close my eyes and throw it all away, but all my Scottish ancestors would spin in their graves:" just think of the cost, keep your baubies in your purse" they would cry.
     
    I watched an Australian movie called "Strictly Ballroom" about a ficticious ballroom champion who finally decides he wants to dance his own way, not the "strictly ballroom" style he has danced since the age of six. He has a mother who is a dancing teacher and a father who appears to be a bumbling handyman. It is a good movie and has a strange but happy ending. It brings back some happy memories of when Ray and I used to dance together. He was soooo smooth on his feet, we could glide and spin and our feet would never let us down. Ah! those were the days. So long ago.
     
    Co-incidentally I then watched a program on an Aboriginal choreographer and how he took up dancing and then nurturing young dancers. He compared the dancing of "white fellas" to that of "black fellas". He said white people dance with learned steps, even the young have moves they make that makes a dance authentic. He said "black fellas" dance to tell a story. They have some traditional movements they make but each dancer choses how they interpret the moves. They have to keep the feeling of the "dirt under their feet". I thought that was a very interesting idea. And having visited the Red Centre and a lot of inland Australia I can see how that evolved. The dirt under your feet, the sky high above your head, in some places that is all there is, with maybe some low scrub to use as a wind-break at your back.
     
    I wonder how where you live influences who you are? I have grown up in small villages, some larger towns and the coastal suburbs. I have never lived in a big city and the furthest I have lived from town is five miles. I lived in England till the age of seven and since then in Australia. I am an Australian citizen. However I don't have aboriginal blood so although I have had some aboriginal friends and think the life is fascinating I can't say I can fully understand it. But taking off my shoes and wriggling my toes in the red dust of Central Australia has been one of my life experiences.
     
    Ray's walking is gradually getting stronger. He walked slowly into church on Sunday. He takes a long time to get there but it isn't the time taken that counts it is the getting there. Sadly somedays I can still see superimposed against that shuffling figure the twinkle toes he used to be. He could run, jump, climb at a great pace. I can remember him a year before his stroke as steady as a rock on the steepled roof of our old church, bending over and fixing the gutter. Now he has to sit down to tie his shoe laces and just lately I have taken over doing that too, if we are in a hurry. It is so sad that he is slowly deteriorating again. His doctor seems a bit puzzled about why it is happening but puts it down partly to the dementia making all his thought processing slower, so something like tying his shoes which is a process takes more time.
     
    Sometimes I am envious of our friends who are once more, with the winter approaching, packing up their caravan, RV's etc and taking off to warmer climates. They sometimes see us in the shopping centre and cheerfully tell us that they won't see us for some months and give us a rough run-down of their future itinerary. It is hard to smile and nod and look impressed. I think I deserve a Logie for some of my acting on this one. I hope it is coming across as sincere as I want it to.
     
    Only in my dreams now do Ray and I walk in the sand, hand-in-hand. I had that dream again last night. Ok I can say, probably just that old, sad sentimental Sue and her wishful thinking. Acceptance - where are you?
  9. swilkinson
    Ray and I went for our bus trip today with the WAGS (stroke support) group. It is the first time in fifteen months Ray and I have been on a bus trip and in a way this was a test run to see if going on a bus/coach for a day trip or for a few days break is possible. Well, from today's experience it is not an option any more. But then I should have known that as soon as we did the pick-ups and I realised I was the only caregiver pushing a wheelchair.
     
    The trip went to a historic house the other side of Sydney. We had morning tea in the park where the Rivercats pull in for Sydney Olympic Park where the 2000 Olympic Games were held. It was a flat area suitable for all the disabled people but only two toilets so we more able bodied let those with an urgency problem go first. I made it back just in time to grab a cup of coffee. The people varied from a couple of ladies who hardly show they have had a stroke, by various degrees to Ray in his wheelchair, some came with a caregiver, daughter or friend and a few came alone, mostly they walked with a cane.
     
    The historic house proved very difficult although as a concession to the disabled it had a ramp. The guide said to the bulk of the group: "You follow me." to me she said:"You go through there, down there, across there and up there and you will find a ramp at the back of the house." I did, after crossing half a cow pasture, a pebbled garden area, a rose garden and a long sloping lawn. Because of the recent rain it was all soft and muddy and required a great deal of effort to get through. A couple from the group held back to help me up the ramp but that was all.
     
    We toured the house which was empty apart from a couple of furnished rooms. The guide then said:"Come on, follow me." to the group and to me she said:"Go back the way you came." Easier said than done when you are trying to push a wheelchair up a sodden cow pasture in drizzling rain. I finished up having to back up most of it. Just as I got near the top the bus driver saw me and came to help.
     
    Of the rest of the trip we were able to do lunch, we did see the sheep shearing, but I declined to attempt another cross country drag to another paddock to see the sheep dog round up the sheep. Enough is enough. I could of course have left Ray up the top and gone down myself but that kind of defeats the purpose of getting him out for the day. The truth is that we can no longer do what we did even twelve months ago. Since Ray's fall, with his current weakness and lack of strength in his legs we have an added degree of difficulty. We not only can't keep up with the able bodied, we can't keep up with the moderately disabled either. My back is so sore from dragging him backwards that I will have to take pain relief tablets to go to sleep tonight.
     
    All this is a bitter disappointment. I did think that by now Ray's injuries would be healed and we would be back to where we were, but that isn't so. I don't know why it shouldn't be so. He had a fall, he fractured his pelvis and hip joint, he did not have another stroke. The doctor says he is doing very well, the physio says the same. But he is still obviously nowhere near where he was mentally and physically to where this all happened in January. I need to find out why.
  10. swilkinson
    There are a lot of well meaning people in my life. They come from all walks of life and from just about every period in my life. They may be friends of long standing or more recent friends. Some are maybe more in the casual acquaintance category but in the past those have sometimes turned into friends too, so I don't as a rule categorise them. They are all friends to me.
     
    I am one of those people who encourages others to voice an opinion. I do so here on my blog and in chat. I allow for people's ignorance of all of the facts and as much as their answer complies with my thoughts on the subject I am happy to say; "Sure, that is worth a try." I then consider how this will fit in with the strategies I am using and then give it a go.
     
    There are people here like Annie, Babs, Sarah, Jean and a lot of others who are in similar situations to what I am. They have husbands/partners who have had multiple strokes, who's conditions have maybe been better than they are now, and who get an uncomfortable feeling when they look too far into the future. I value their advice above a lot of others as I know they know what caring is all about. Others show sympathy, encouragement, hope in what they write and I am really glad to have their comments too. Still others offer a friendship based on mutual trust and caring and that is good as well. I am very blessed by you all.
     
    In the past week I have noticed that a lot of my friends, acquaintances etc in real time want to give me well meaning advice. The crux of this is often: "In order to save yourself you need to put Ray into a home. " It may be worded so sweetly and couched in flowery phrases but the bottom line is just that. This is very contrary to my feelings on the matter.
     
    I do not want to put Ray into a hostel or nursing home. I want some advice on little steps to take so I will feel comfortable with the way things are and be able to cope again. I know this might be just for a short time but the longer we are together and I can keep Ray in his own home the better. I find it hard sometimes not to be angry at what the well meaning friends say. But it is their view on what they see as the problem and as long as I do think they understand at least some of the situation I need to listen and pick out the pieces of advice that I can implement.
     
    A friend of long standing said to me today:"I know you don't take advice well." She is wrong, I do take advice. I look at all the angles of what needs doing and I eventually decide how I can do it. I can't see that any of us do anything different to that. Listen, learn , assimilate. Am I right here?
     
    We all live in a bubble of our own making. Sometimes we park those bubbles side by side and speak to each other. We communicate in whatever way we can our thoughts, hopes, dreams and aspirations. We do it in conversation, in chat and in a more obscure way, in our blogs. I am not saying to you straight out:"I am losing it. I am going mad. Ray has to go." That might be the truth for a moment or two but the next minute after that I might say."Look, he's sleeping now, I'll put my feet up. It is okay, I can cope for now." That is the way life is, it is not like a solid Easter egg, chocolate all the way through, it is more like Forrest Gump's "box of chocolates"...
     
    So I need to say to myself, let it all flow, take it easy, let time take care of your worries, keep on keeping on, take some time for yourself. You have all given me this advice at one time or another and I am really grateful for it. The wisest words are often the most trite, those sayings that seem to be overused are that way because they are wise words. Wisdom is just common sense in a more poetic form.
     
    It is coming up for eight years since the first of Ray's major strokes, 19th April, 1999, the day life changed forever for me. Maybe that is why I am a bit bristly and uncomfortable with life, why I am at odds with what I say and how I feel. This too will pass.
  11. swilkinson

    Ray's dementia

    By swilkinson,

    This is not going to be a happy blog so some of you probably shouldn't read it. We all get confused sometimes. Forgetting things is normal. But there is a step beyond forgetting that can be signs of early dementia. Ray has vascular dementia but he has just completed all the signs of early dementia and started to show some of the signs on the moderate list.
     
    Because I was worried over a few incidents that have happened in the past week I went back to re-read some of the information I got from the Alzheimer's Association. I need to know what is happening and then learn how to handle it. Not sure if I can handle a lot of it if Ray's dependence and dementia increase at the same time as they seem to be doing right now.
     
    Signs of early dementia.
     
    The person may:
     
    . Appear more apathetic, with less sparkle
    . Lose interest in hobbies, activities
    . Be unwilling to try new things
    . Be unable to adapt to change
    . Show poor judgement and make poor decisions
    . Be slower to grasp complex ideas and take longer to do routine jobs
    . Blame others for "stealing" lost items
    . Become more self-centred and less concerned with others and their feelings
    . Become more forgetful of details of recent events
    . Be more likely to repeat themselves or lose the thread of recent conversation.
    . Be more irritable or upset if they fail at something
    . Have difficulty handling money
     
    Well that is Ray alright. Today we had an argument about something that I had put somewhere where he couldn't find it and the item was in his top pocket. Just the last of a lot of similar arguments he has started in the last few days.
     
    From the moderate dementia list he is showing:
     
    . Forget names of family or friends and confuse one family member with another
    . Behave inappropriately for instance going outside in night attire
    . Become angry, upset or distressed through frustration
    . Forget or confuse memories of recent events or events from the past
     
    As there are twelve items on each list four out of twelve does not mean he has moderate dementia but only that the dementia is progressing now. As time goes by he will slowly lose his ability to remember, understand, speak, recognise family etc. Mum is there now. She can still walk and eat. She has not had strokes like Ray who already has some impairment in those areas.
     
    I was hoping the increased signs of dementia was from the stress of the last three months since the hip fracture and they would start to diminish but so far this is not so. Ray is doing some of the exercises recommended by the physio, his walking however is still not good as he still bends his back in the same way we once took for granted as the way old people walked. That is to do with the way he perceives balance and that is an area that can't seem to be fixed. Therefore he will always be prone to falls.
     
    People with dementia can be difficult to care for, I had my mother here with dementia for two and a half years. She was probably where Ray is now when she came here. But she was completely mobile and so "ran away from home", stayed up all night, sneaked food and made a mess of the kitchen, exhibited a lot more irritating behaviour, behaviour which made a lot of extra work. She also refused to have a shower, became violent towards me when she was cross with me, deliberately broke things etc. From time to time she was so irrational that there was no reasoning with her. I think that was one reason in the end that I consented to her placement in a Dementia specific Lodge, where she still is five years on. I couldn't physically or emotionally look after both her and Ray.
     
    I may be able to go on looking after Ray for a long time yet. If his physical health does not continue to deteriorate I can manage his mental conditions until they are bordering on severe dementia. If however both his physical and his mental condition deteriorate it will be a day-by-day existence and that may be a problem.There is a lot of advice in my brochures for setting up the right environment for the person with dementia, the "Do's and Don'ts" list is long and of course says not to get angry, not to argue, not to tell the person what they can and can't do etc. I don't know how I could possibly do all they say is needed, or become the saint I would need to be to behave just right so the person with dementia was never confused, angry, frustrated etc. Maybe there are some caregivers who are that PERFECT!
     
    I think I prefer the last two lines on one of them:
     
    . It is critical you take care of yourself
    . Try not to ignore other important relationships in your life.
     
    Maybe it should include:
     
    . If all else fails, leave, don't look back, get a new life.
     
     
  12. swilkinson

    how good is well

    By swilkinson,

    "Ray is doing really well." a lot of people seem to be saying that to me lately. With some of them there is a lot of wishful thinking involved. If Ray is well they can back off and stop worrying about us and go about their own lives again. This applies to the kids and the couple of more distant families members on Ray's side, people who really do care about us. I appreciate their concern and I know how long all this has been going on for. Ray's illness has been a bit like those old time radio shows, a long drawn out affair to say the least. And those who wanted it to all end "happily ever after" have just stopped enquiring.
     
    So how well is Ray doing? He is not back to standing alone to shower, his process thinking seems a little less accessible, his willingness and ability to do some of the tasks he used to do, such as the lighter washing up of the few lunch time dishes seems to have disappeared too. Thanks to the physio he is beginning to walk with his weight more evenly distributed, a guarantee against falling as often. Nothing is going to stop him from having falls, we all know that. But the less he falls the less likely there will be more broken bones. And long periods of hospitalization.
     
    Today he had a shower nurse shower him, then we went shopping, came home and had lunch, then went back down to the physio who is in a building at the back of a small hospital just beyond the shopping centre. After carting building materials to the bins yesterday for the clean-up I was glad to only have to load and unload the wheelchair twice as my back is still sore from the pulled muscles on Friday. Another few days and it should be "normal" whatever that is.
     
    I could hear the physio arguing with Ray as he tried to get him to weight bear on his left leg. Ray could do that for a very short period of time before the fall, now he does not want to do it at all. I can understand that. There is a neon sign flashing on and off in his brain saying:"WHAT IF I FALL?" so he doesn't want to do anything he sees as risky. The physio is a muscular young man and I am sure could prevent Ray from falling but Ray's brain does not want to take that chance. He was really rigid with fear and could not relax. They are going to try again next week. I will try to reassure him before we go, that it is okay to do what the physio wants to do as he will catch him. I just hope that is TRUE.
     
    The last two weeks we have been back to the episodes of incontinence, mostly of a minor nature but for some time Ray was dry and clean all day. The shower room next to the toilet is a real bonus for those "have to have a quick shower" occassions and I am so glad it is operational. Bless all those who gave of their time to make it happen. But the big fear is as always what will happen if "it" happens when we are out and about. Just the thought makes me shudder. For those of you who cope with this all the time, ignore my venting here.
     
    Our visit to the doctor on Tuesday left me with a new dilemma. The doctor and his wife had been away for a short break, flying down to Melbourne and going across to Kangaroo Island. It is a delightful place, we went there three years ago. The diversity of wildlife and bird life makes it a "must see" for nature lovers. Anyway the doctor was telling us about his holiday and said that of course a holiday like that would be no good for Ray but he could see no reason why we could not resume going on our bus trips again. WHAT??? Ray still not weight bearing properly, with the added stress of a recent fall etc etc? Of course Ray's eyes lit up and he turned to me with a knowing grin as if to say :"See, I am well again."
     
    Now what do I do? If I do take him on a holiday there is so much work involved just to get up, pack up, set up the insulin etc before a breakfast that is usually 7.30am and departure at 8.30am for a tour of the local beauty spots or the drive to the next overnight stop. Excluding the inconvenience of steps everywhere, small pebbled driveways, blocked off doorways etc that slows this process down, it is still a lot to ask to expect me to push him from far distant rooms across dew-sprinkled lawns to the dining room, or down long winding corridors to a breakfast room. In the past I have set the alarm as early as 5.30am to get the shower etc in. I think it is asking too much now for us to keep up with able bodied people, albeit elderly ones. For bus trips you do have to have a certain amount of stamina and as yet Ray does not have that.
     
    On any trip there is the problem of the wheelchair and the luggage, so I have to make several trips to get us to our accommodation. Then there is the "sorry, we do not have a disabled room for you, dear" excuses that means I will have to try to balance Ray with one hand while using the other hand to hold the shower hose and hose us both down, that is unless there is only the overhead shower rose. Then I position him under it and just dodge the deflected soap etc. You all know all this stuff, if there is no disabled room we, as caregivers, have an extra load to carry. Add varying surfaces, strange combinations of furniture etc. heavy drapes that necessitate having the light on all night etc. Not what I would opt for as a restful holiday. But for Ray, sitting in the window seat and watching the world go by it is a different matter.
     
    I do get tired of trying to live up to other people's expectations. I do as much as I have the time and energy to do with Ray. It is a case of: "The difficult we do at once, the impossible takes a little longer."
  13. swilkinson

    thoughts

    By swilkinson,

    Thoughts for Easter Day
     
    Heard some hopping in the night
    Not a sound to give a fright
    Easter bunny having fun
    Leaving eggs for everyone.
     
    Went to church again today,
    Happy, happy Easter Day
    Remembered that the egg has meaning
    Not just sugar for the gleaning.
     
    Hollow eggs remind us then
    That the tomb was empty when
    Followers with heart filled dread
    Came expecting Jesus dead.
     
    And the solid eggs remind us
    Of the wonderful life inside us
    Eggs from which small chickens grow
    Contain the seeds of life you know.
     
    So the bunny with his sharing
    Tells the world we should be caring.
    As did hymns we sang today
    Tell us we have NEW LIFE each day.
     
    copyright Sue Wilkinson 2007.
     
     
     
  14. swilkinson

    bobbing along

    By swilkinson,

    "When the red, red robin comes bob. bob. bobbing along, along" says an old song I once used to sing. That is how I feel this week. Do this, bob bob, do that, bob bob. Just going from one job to another, not much time to rest in between. Autumn (fall) is that time when you clean up the outside of the house, clear up the inside of the house, pack things away, put things right. It is a busy time.
     
    On Monday the tilers came and tiled the shower room. They were here most of the day tracking in mud and clay and builders' sand. They whistled and sang along to their radio. They were young and noisy and just happy to be working on a little job that would not take all day, they said. I can understand that, in a week with a four day break at the end of it it is good if you can finish work early one day to do banking and other small errands that need doing. It is the way Ray would have felt when he was working.
     
    Today we went to Tori's school to Grandparents Day. This has largely replaced the morning when parents went to school to look at your work, that is in the evening time now. Grandparents do not always work and so are available through the day so this morning at 10am there was a sea of grey hair and wrinkled faces and spectacled eyes and happy smiles waiting to be entertained. The kids put on the usual recorder band, junior choir, senior dance troupe performance ( I did think of you Dave) and the deputy principal handed out some awards and the Kindies wriggles and got the stern look and the pointed finger from their teacher. I did hear her hiss; "Tori, sit down." once as Tori turned once again to give us a beaming smile.
     
    The school is built into the side of the hill and not even a bit wheelchair friendly so I did have some difficulty with it all. Tori wanted to go down to the oval to show us the swings and gym equipment so I wheeled Ray down and another grandfather helped me push him up again. Her classroom is nowhere near the ramped area but by taking the ramp and circumnavigating a couple of buildings we got there in the end. The eight steps down into the sunken classroom I did manage to haul Ray down and then up. And all the time our grand daughter glowed like a glow worm with the glory of having her Granma and Pa on show. So it was worth all the difficulties we overcame to get there.
     
    The DP in his speech said his grandparents gave him the strength to face the difficulties in his life. He had an invalid father but a strong grandfather and a stronger grandmother. He said he spent a lot of time with his grandparents and learned a lot about rural life and the district in which he lived from them. For those of you who are actively involved with grandchildren his accollade is for you too, as he said he would not have grown into a well-rounded human being without their imput.
     
    This afternoon was craft group so we had just twenty minutes at home to have some lunch. Then off we went again. Ray has some scrambled eggs on toast, a real quickie meal in the microwave and the handful of herbs used for flavouring came from the pots outside the door.
     
    We left craft group early to go to the physio, the appointment postponed from this morning. There Ray was shown how to use the stationary bike by sitting behind it and using the pedals. This will help his hip flexors rebuild. He broke into a sweat after three or four minutes so it might take a while for him to build up to twenty minutes a day! The physio is determined he will improve his walking to the stage where he is no longer in danger of falling. He is young and enthusiastic and I hope he can gradually retrain Ray to walk in a way that will be more safe. It is a real relief that someone has some new ideas in that direction. And so far Ray is listening to him.
     
    Tonight is our Lions meeting. I met up with one of the Lions ladies through the week and she told me in detail of the many illnesses the older members are suffering from. Goodness me! And yet they are a cheerful bunch and put in many hours each week collectively helping our community. Most are in their 70s or 80s so could if they wanted just retire to a rocking chair, but they are from a generation when helping out in the community was a thing to be admired. Ray, as a person who has had five strokes, is among the disabled members but still likes to do what he can to help. So we will once again be selling raffle tickets shortly. Might as well do it while we are still able.
     
    Tomorrow will be easier as I come on here in the morning and talk to some of you in chat . And then I will tackle some of the inside jobs in the afternoon as there is rain predicted. We are getting some moisture at last though the rain is mostly light rather than the steady rain we really need. But there is always plenty of housework, more than enough to keep me busy. And if I have any extra time I will cook some meals for the freezer too.
     
    Thursday is shopping etc, my normal Friday routine, Friday is Good Friday. Another busy week, but at least at the end of it I should be able to look back and say I have accomplished something.
     
  15. swilkinson
    From time to time I have nightmares. If they are bad nightmares, the sort that starts a re-run as soon as you close your eyes I get out of bed. Either I read for a while or come here to the computer. I did that twice last week. 4am and I am awake, in front of my computer, wrapped in my comfortable dressing gown. Hugging myself to send the demons in the bad dream back to where they came from.
     
    Every time life gets too busy, and I get too stressed I start on the nightmares again. There is the one about running on the spot, in the dream I am trying to catch something or someone who has just gone out of sight around the corner. You've probably had this one too. So I try to increase my speed. I either wake in a panic or feel as if my chest has hit a brick wall. Then there is the black terror nightmare, I am in the dark, just outside my vision is something even darker, moving slower ahead of me. I am trying to hang back, suddenly it is facing me, something so terrible I can't even breathe. I wake up from that one too.
     
    What do dreams tell us? I often wonder if it is worth finding someone to interpret dreams but know from biblical stories that that is not always wise. So mostly I just trust that things will get better and the nightmares will vanish again. Oh sometimes to drift into sweet sleep like a child does, just close your eyes and go to sleep. Go to sleep without running through the lists of what I did and did not do today. Like Lucy I wonder why I feel guilty. As if I have some control over what life brings day-by-day.
     
    The past few days I have had some contacts that have irritated me. The sort of friend who rings and says they have not seen me, sounding as if it is my fault and I am hiding somewhere. I explain that Ray has been sick and so I have had to stay close to home. The non-understanding caller then says: "But he's better isn't he? You should be able to do ### now surely?" Gosh it is nice to be wanted isn't it? And in the past I would have moved heaven and hell to help out but it just isn't practical to try and fit anything else into a life that needs more time out not less.
     
    Next week is the one the church calls Holy Week, the lead up to Easter. It starts with Palm Sunday and in most churches there will be palm fronds or palm crosses handed out. Some churches will re-enact the ride Jesus made into Jerusalem on a donkey, "humble, and riding on a donkey" an old song we sang as kids had that in it. Then there is a week of prayer, then Good Friday, Easter Saturday and glorious Easter Sunday. They throw in Easter Monday here so the workers get a four days weekend if they have a Monday to Friday job. The shift workers, the casuals and us caregivers just go on working our usual hours.
     
    I am not ready for Easter this year. I have not been reading my Bible and reflecting, I have been looking after Ray, visiting him in hospital and now he is home again, looking after him here. I do not have time to sit and pray for the world and all its sins. I am too busy. I hope though that others are spending their time in prayer. The world sure could do with it. The news is full of the reckless,selfish acts of mankind. The deaths caused by hit-and-run drivers, senseless crimes against old folk, the humble surely do suffer at the hands of the powerful and the strong no longer protect the weak. Guess that much hasn't changed a lot in 2000 years. We still need someone to come and straighten us out, give us some new rules to live by. As for someone dying for our sins - would anyone notice?
     
    I am like the figure I see in my nightmare, the one who runs on the spot. I have a garden full of litter, my green topped garden litter bin goes out tonight, it is raining. I can't go out and sweep it all up. I have so many small insignificant jobs to do, ironing, mending, tidying away. The contents of the store room is still on the back verandah, under the patio roof. There is nowhere to put it and I will have to wait until I can think of small moves that will open up a corner here and a drawer there so it all fits back in. Sure I could throw some of my stuff out and when I need it? What do I do then?
     
    The shower room is on hold as the workers are mostly involved in a trip to Malaysia to a convention. So nothing now until they come home again. The work is two thirds done. But now we wait. I'm going to wait sitting down, not running on the spot.
  16. swilkinson
    When Ray has his major strokes in 1999 we had six weeks at Bendigo, a rural city in Victoria about 600 miles from where we live. Ray was in the big hospital, in and out of intensive care as he had strokes, embolisms, burst stomach ulcers and arrhythmia attacks. I stayed at the old nurses home, now used for visiting students and stranded patients and their families. There for the first time I talked with other caregivers. Up to then I had probably spoken to a few but it was more in a :"You have my sympathy, dear" way than in a way that was supportive. This was the first time the person who desperately needed support was ME!! Now I listened to what others had to say about the difficulties of living with someone who needed a lot of time and attention and devotion as their care needs increased. Hey! this was all news to me. So I listened really hard. I needed to know what lay ahead of me.
     
    When I was a telephone counsellor on the Lifeline phone in the late 80's, early 90's,I spoke regularly on Wednesday afternoons to a guy named Bill. Bill cared for his wife with a mental illness and his three daughters all in primary school. He was a cheerful voice on the phone. He called because those who cared for his wife focussed on her, no-one seemed to care about him. So he rang our support number to just debrief about his role as a carer, tell us about his week and tell us some of the problems he faced as a male carer in a female household. I think that was my first real glimpse of the loneliness of the caregiving role.
     
    Bill sometimes said that although he loved his wife he didn't know how long he could continue to live that way. I never knew what happened to him as I changed to a Thursday evening shift to help out another counsellor and no longer got the calls. Due to confidentiality issues even if I had asked the person who had taken over my shift about Bill I would not have got an answer. It was one of the frustrating things about that job that people only came into your life briefly and when you got to know them, and like them , as I often did, they could disappear at any time leaving us wondering what had happened.
     
    Other callers also became a favourite time on the shift, little old ladies nursing sick husbands would phone in on Thursday nights, or any night come to that, after their charge had gone to bed. I guess telephone counselling services functioned a lot like this site does, except that the counsellors were trained and the clients were anonymous. Other similarities were that often both parties were reaching out, the counsellor as part of a wish to help in the community (in an anonymous way in some cases as they would have been well-known people) and the clients were reaching out to get the help they needed. Not all of the calls were traumatic or of a vital nature, some people just felt the need to chat for a few moments to push the loneliness away.
     
    The journey after Ray came home from hospital and rehab in 1999 I have documented in other blogs. I found the changing role from wife and wage earner, to wife, mother, daughter etc and caregiver pretty harrowing. I was not an uncaring person but I was not a natural caregiver. I had to be trained by a lot of people in small increments as I learned to care for Ray's physical and emotional needs. I had three kids and in some ways I suddenly had a fourth, albeit one who had formerly been my husband, lover etc. Now our roles were changed and I did not find that easy to take to. I so empathise with those who come as newbies to Strokenet and express their chagrin, fear, worry and sometimes despair as they too become caregivers to a stroke survivor.
     
    In 2000 Ray broke his hip and I stayed in a hostel set up for people using the oncology services at the hospital which was on the south coast, again a long way from home. Only a few of us were caregivers, the rest were patients having daily scheduled treaments that required them to be near the hospital on a 24 hour basis. Having them live close by but not in the hospital was seen as an advantage as they could actually have a close relative live in to support them. I felt as times as the cancer survivors came back from treatment that I as a caregiver was one of the lucky ones! I got friendly with an older lady who was there while the surgeons operated on her husband who had cancer but was also having a hip replacement. She was not well herself and said to me one day:"It is not just being a nurse to my husband, it is the whole package!" I think after all these years I suddenly know what she means.
     
    It is not just giving Ray the pills and the insulin. It is about remembering to change the needles, shake up the mixture, remember which side it went in yesterday, put it back where I got it from. It is about going to the pharmacy, for the right med, on the right day. It is about going to the doctor's and asking the right questions. It is about being an advocate for Ray in his contacts from day to day, filling in the information he does not remember, being his social secretary, his messenger, his letter writer. It is about paying the bills on time, keeping the appointments, remembering who you phoned last and about what. It is still being a wife, mother, grandmother and daughter and still doing all of the above.
     
    I know some of the single survivors do a lot of this too, they are both the survivor and in a sense the caregiver as they learn to deal with all the stroke related/medical related issues and keep a household running. I know what a strain it must be on them - as much as a person who has not had a stroke CAN feel that tension. It is not as easy as we imagine to feel another's pain.
     
    I want to update the history of caregiving sometimes. To explain that where I am now is an indication of where I have come from. The years in Lifeline telephone counselling, pastoral care with the churches, my stint in a major hospital as a voluntary chaplain have all had a place in the way I am now. None of us came to the caregiving role with an instruction book. We all have to learn as we go along. Like child rearing most of us get just one go at it and will never know how the results relate to what we did. It is a process, sometimes a rewarding one, and sometimes one you wouldn't wish on your worst enemy.
     
    To some people who look on at our struggle it must all seem fairly simple, after all how much trouble can a lovely gentle smiling person like Ray be to look after? I guess what they fail to see is the same struggle as we all put into working and looking after kids at the same time. I work as a nurse, counsellor, cleaner, gardener, cook, housekeeper, secretary, personal assistant etc for one man - Ray. I also act as driver, medical advisor and so many other jobs that you can probably add to if you think about all that I do.
     
    Unlike a lot of women my age I can't spend hours drinking coffee in the mall, getting my beauty treatment , buying bling. I can't flit off on holidays by myself, visit friends or family for a weekend on my own, get myself back in shape with a personal trainer. I am restricted in what I do as I have a limited number of hours during which I can be away from the person I care for. I am not complaining...hello...do I look like a person who needs my eyelashes tinted?
     
    But I am saying caregiving is not just a job, it more than that, it is the whole package.
  17. swilkinson

    my worst enemy

    By swilkinson,

    My Dad had a saying "I think he is his own worst enemy." Well I think sometimes I am mine.
     
    For one thing I can wake up full of positive thoughts and Susie Sunshine philosophy but it only takes one small thing to go wrong and my attitude changes. I don't mean to be negative, but a few minutes late for "X" and I feel as if the world is falling apart around me. I rant and rave, stamp and scold and finally Ray will be ready, so down the road and into the "late for wherever" traffic jam. Our main road is always under road construction somewhere or other so 50% of the year there is a hold up somewhere nearby. Grrr! How I hate some mornings!
     
    Then I still make snap judgements, most of the time I am a kind friendly thoughtful person but let something go wrong and all that changes. I become a mad woman clawing anyone who comes close. I can snap a caller on the end of the phone, hang up in the ear of a telemarketer, push in front of a car crawling across my lane, out-run older folk to get one place up in the queue at the supermarket. Don't they know I only have three hours to do all I need to do? I seem to have a madness take over my life sometimes. The constraints of time act like a strait jacket and cut off my goodness and I become as dog-eat-dog as all the ungodly out there.
     
    Of course a lot of this is down to stress. Since Ray has been home from hospital and we have added a physio appointment on Tuesday mornings and a doctor's visit Friday afternoon each week that has added tension to the week. But Ray was back at Daycare this week though so at least I got the time off while he was there and tomorrow will be Ray's second 9am-12noon time with a minder and my second three hours break so things should start to fall into place again soon.
     
    On the cheerful side we did finally have a meal out with Ray's sister and her husband, she has been ringing since November and promising that we would go out "soon" so am glad the time finally arrived. It is not that she's not a nice person, she is, but as a couple they are very self-absorbed and I think everyone else is just on the edge of their universe. Others have said in their blogs we are not always in the forefront of every one's minds and that is so true. Our tragedies seem devastating to us, but to others they are just another bit of bad news and you know for sure they think of us occassionally. But as Ray' sister said today: "By the time I start to think of ringing anyone it is way too late at night." I can fully understand that as the same applies to me sometimes too.
     
    The other good news is that my Dad's one remaining brother who lives in Ontario, Canada is thinking of coming to see us for another holiday in September or October. It is a very long way from him to us so I really appreciate even the thought that he might come and see us. He is a great friend to have too, always in touch as soon as something goes wrong. He said that he would like to visit us one more time. I hope he is able to do so.
     
    There is always some good things to look forward to. Cooler weather, sunny warm days, nights cool enough to sleep, plenty of nice fruits and vegetables in the shops. The shorter days will give me more time to work on some of my cold weather projects, so out with the crochet hook and the knitting needles and the patterns. Time to put the feet into the warm slippers, wrap the blanket around the legs and dream. If you think that is going to happen YOU must be dreaming.
     
    So t'is time to finish the chores of the day and put on the dinner. Always something to do. Before my worst enemy appears on the scene and wrecks my peaceful thoughts again.
  18. swilkinson

    good memories

    By swilkinson,

    Today it is raining, not the rain of summer with thunder and lightning and spectacle, but the quiet , gently falling rain that tells me the seasons are changing and autumn (fall) is here. There is no dramatic changing of leaves or other signs to tell us, just gradually falling temperatures, shrinking daylight hours and the lessening warmth of sunlight. Daylight saving ends next Sunday and that will mean earlier evening mealtimes as the days draw in rapidly. It is a time for packing summer clothes away, reviewing what will stay and last another season and what will go to the charity shops or the rag bag.
     
    I've been looking for something to do with this time when I will have to stick close to Ray for a while. Previously I could at least go for a walk while he slept or visit a friend down the road, or walk down two streets to post a letter while he is having an afternoon nap. Now because of his fragility I am not going to leave him on his own . So I need a new hobby to keep me from going mad imagining I am confined by this new state of affairs. Sure I have here to escape to but I need other hobbies too to keep me interested in life while inside the house. So with that in mind I am sorting through heaps of boxes of junk in search of all those photos I've been meaning to put into order and haven't. And that has released a treasure trove of memories.
     
    I wish I was one of those people who could say:" This is when we were in Queensland in 1989, we met those people Mum and Dad knew, who lived in the corner house and had tea with them in that converted boathouse by the river." My Dad would have been able to do that. He remembered everything he ever did, most of the people he ever met and a lot of the conversations he had had almost as if they had just happened. I have the kind of mind that recalls something if my memory is jogged as I did just then when I remembered we did meet old neighbours on a holiday in Queensland.
     
    So I have decided I will give them a rough sort and see if I can connect memories to them. All those trips on holidays in various beauty spots must contain some happy memories. We often used our holidays to visit friends, catch up with family, give the kids a new experience. So there have to be a lot of things I can recall if I just put my mind to it. Ray isn't much help now either as he has very little long term memory he can access. But Trevor might be able to remember some of the events if not the years.
     
    Today Ray had a phone call from an old friend. I have kept up an email relationship with his wife but Ray and Des have not talked for maybe four years. Des was invalided by an enormous tumor on the brain that took two operations to incise and six months in hospital to recover from, that was 24 years ago. His wife has been his caregiver as he was left with brain injury that mimicked a severe stroke. He is a cheerful, larger than life character who has learned to live with the misadventure that left him severely disabled. Some of this is due to an assortment of friends who stuck with him and kept him afloat. They and his wife and her family have kept him comfortable, well looked after and with the feeling that life still holds a lot of promise. They are two people of faith who live life as well as they can, and in doing so provide a fine example to others.
     
    Des rang because he was worried that Ray's new problems would be too much for us and we would part company. He rang to comfort us and tell us that life is what you make it, each day is worthwhile and you have to get on with the hand you have been dealt. He talked about how wonderful his wife has been to him and how grateful he has been for the past twenty odd years they have had together. It is humbling to realise sometimes that those with bigger burdens than we have ourselves have much to teach us about gratitude. This was a phone call worth much more than he could imagine as it made me more determined to go on and strive to rebuild our lives once more.
     
    We all have powerful lessons to learn and the wisdom we gain from those lessons to share with others. We can be down and climb back up again. We can be despised and rejected and maintain our self respect. We can be sidelined and yet live in such a way that we provide a safe and secure place, like this site, for others to come to. Life is not impossible to live with our restrictions it is just a bit harder. No sissies here, just a few people striving to push the stroke to the back of their minds and carry on living.
     
    The phone call was nothing like a sermon. His quirky sense of humor shone through. He recalled one mate he had been close to and says he never sees him now, :"If they can't hack it, let them go" he said. "You have to stick with the people who stick with you." This is a lesson I have to learn over and over as I yearn to go back to the life we lived pre-stroke. I have to keep letting it all go, over and over, until it really does GO. Then I can move on and start to rebuild. I AM grateful to the people that have stuck with us and the new friends we have made through the experiences we have shared in the past seven years. It is true "that which does not break us, makes us strong" but it doesn't say how battered and bruised the experiences sometimes leave you, but all bruises fade eventually.
     
    Neither Ray and I can go back even ten weeks ago to when I didn't have to monitor his movements and use the wheelchair to run him in and out of church. There is never any going back. The critical event happens, the consequences are our new reality. We just have to get on with it. That doesn't mean there is not plenty of good times ahead. Just that I have to accept that they will be different to what I imagined life would be at this point in time.
  19. swilkinson

    a week of activity

    By swilkinson,

    I kind of imagined that Ray would come home and life would settle back down again. I don't think I could have been more wrong. If anything it is like living in a washing machine at the moment, one minute you're up, one minute you're down, every minute you are moving!
     
    Ray came home on Thursday as planned. He was really glad to be home but I can see a big difference in him. He is just drifting, just doing what has to be done and nothing more. If it is mealtime he eats, just eating takes a lot of time now as he seems to eat in slow motion. Then he gets up and goes back to whichever chair he was sitting in before. If I ask him to he goes to the bathroom and washes his hands and face but if I don't mention it he just sits. I guess that is the long term effect of a long stay in hospital, you just take sitting and waiting as your daily task and everything else comes from people asking you to do something. But he needs to be up and doing or he will just continue to get weaker and weaker.
     
    On Friday we went to the doctor and the barber. Our barber is a character, as they all seem to be, and he chats and jokes and teases his customers. Ray loves the trip to the barber. "Look in the mirror, what a handsome man. Ten years off your age , mate. Look out missus will have to beat the girls off with a broom. You take care now, you hear." By this time Ray has a big grin across his face.
     
    The session with the doctor is not as good as the doctor reads all the discharge papers, looks up the new medications, agrees to all of them but one, the gout medication clashes with one of the others. Ray only gets gout occassionally and just stays off his feet for the day so he doesn't really need it. The doctor is now very concerned about Ray's ability to stay at home. We discuss safety issues, walking etc. I say I can cope at the moment. I think he is concerned for my health too but at present I am okay. But I am very tired. The few little jobs Ray used to do like the lunchtime washing up he no longer does. Not even made his bed except for one day this week. Adding those chores to the ones I already do may "break the camel's back".
     
    The weekend just went by in a blur, I am trying to get things back to pre-fall level, we shopped on Saturday and went to church on Sunday and Ray slept the rest of the time. He seems to need a lot of sleep again. This means only doing one thing a day not two and life is hard to fit in when that is all you can do. I am not feeling the best as the winds are blowing from the west again and my sinusitis is back with a vengeance.
     
    Monday we had a quiet morning, well Ray did, I have a lot of housework piled up and am trying to pack back a bit as we have the shower room going in where my old store room was and what the heck are we going to do with the contents of the store room? In the afternoon Ray had physio so we made a brief visit to Ray's Daycare "family" they were all glad to see Ray and the supervisor reminded them Ray will be back on Monday and they cheered! That gave him a real boost. The physio is another of those bright enthusiastic young men who knows that if the client just does all the exercises every day at home all will be well. I won't give you my opinion of that thought as I want this to be an upbeat entry for a change.
     
    Tuesday the shower nurse came, she was bright and breezy and fortunately on time. We had a funeral to be at at 10.30am so she arrived at 9.15am, swung Ray into the shower and brought him out all pink and clean. She said she could do other jobs if I wished to fill in the hour but I explained that we really needed to be out of there by 10am. And we were. Just. We had to pick up a friend and went to the funeral, burial and funeral tea. Didn't arrive at the tea till 12.30pm and then had to leave to take a neighbour to Craft, went back to pick up Ray, went back to the church for Craft etc. Made a bit of a whirlwind of the day but we survived.
     
    One amusing incident happened at the funeral tea. It was held at the deceased person's house. She had a lovely garden planted down the long sloping land, designed as a rainforest with twisting paths and steps at various levels. Like most rain forests this is supported by.....well, you guessed it....rain. So when the rain started softly falling right after we got there, so did the pipes running overhead that use the water off the roof as additional watering, so the guests got quite a good sprinkling. Most hid under strategically placed umbrellas and avoided the worst of it but Ray had been carried down two flights of stairs in his wheelchair and we were a bit short on cover, so a small hand-held umbrella had to do the job. I then went away to do the first run to the Craft group. Then some of the the men of the party decided Ray needed to go inside so could walk up the stairs with a bit of help. So taking him under his armpits between them they hauled him up! Being a "bloke" he of course did not mention that he was not allowed to do stairs, has osteoporosis etc so they thought they had done a good deed and I wasn't about to say otherwise. On the other hand he got no sympathy when he mentioned the next day that he was a bit sore under the arms either! He has to learn to speak for himself if I am not with him.
     
    Wednesday our four volunteers from our Apex40 club came and started the shower room, it was the best part as far as they were concerned, the day of demolition! So the walls and floor were cleared and then out through the window the wall cladding went in small enough pieces to fit through. Then they jack hammered a new waste pipe area, and reefed up the concrete outside. I am the builder's labourer who gets to cart it all away though. Wouldn't you just know that had to be the case? So all my store room content is out under the shelter of the patio roof and somehow in the next few days I have to filter it all back into the house. Yesterday I also had to clean out and repack the freezer so I am really starting to feel as if all this comes at a pretty high price. My aching back and my aching arms!
     
    My.... look what a large pile of rubble there is to clean away before Saturday. Imagine me red in the face and hauling concrete to fill in holes at the side of the driveway for the rest of the week.
  20. swilkinson

    He's Home!

    By swilkinson,

    Ray is home. We've had our first fight already so some things haven't changed...lol.
     
    I picked up the quad stick at the "lending store", the hospital provides it free on loan for three months so he shouldn't need it after that. I got lost because it is up the back of an old industrial estate, waaay up the back. But still I got it. I've also borrowed a narrower shower stool but have decided to have the little store room next to the toilet made into a shower room anyway. That way there is no hassles when he has to maybe have a wheelchair style shower chair. Looking down the track that could happen.
     
    I have all the gear to give him his first insulin tomorrow morning, still shivering in my shoes about that but a lot of you have shared your experiences so I know that practically I have to do it and it will be okay. Also got a run through all his meds, he has five different or new drugs now, the doctor might not want all of them continued, we'll find that out tomorrow when we go to him. There are meds for gout, a third diabetic med, a new one for the arhythmia and the calcium supplement and the b12 shots, weekly now, monthly later, so that is a heap of medication. Most of it will be subsudised so hoping not to have too much expense there.
     
    There is now a shower nurse twice a week and hopefully the minder on Friday mornings to give me respite. I will only at this stage have the help for six weeks as this is short term care package designed to give caregivers the incentive to bring an invalid home. Then if I am lucky I will get the long term help until Ray reaches 65 in September and then he goes into another catagory and I qualify for help more readily, well that is the theory anyway.
     
    I have had three very sad phone calls today. The first was to tell me of the death of an old friend, the second to tell me another old friend has just entered hospital in the final stages of terminal cancer which is sad but he is an older man and has had a wonderful life. The third to say another friend has just had a massive stroke, right side paralyzed, no speech, nothing but the hand squeeze to show he can hear. He is a larger than life storyteller of note who has been the judge of many a debate and once ran for parliament so his speaking has made him famous locally. What a crying shame! He is maybe 65.
     
    Since Ray has had his strokes and limited abilities we have made some fine acquaintances and a few good friends. All are much older than us and so slowly we will lose them, it is one of the disadvantages of having older friends. But when Ray stroked at 57 and had to retire these were the people who offered us help, emotional support and their friendship. We all have expereinced losing those we thought of as friends. For us some disappeared immediately, some fell away as the years went by so we have been grateful for the company of these delightful older women and fellows but are now destined to see them pre-decease us both. Sometimes life is like that.
     
    But on the brighter side I also received two offers of help, one to supervise the tradesmen I will have to get in to do the new shower room and another to give me a sitter for Ray if I need to go out. I will sometimes have to get away, to go the the pharmacy or to get my hair cut or maybe to see Mum for an hour's visit. This could be used when Trev is working nights so with him in the house as a back up I am sure this sweet little older lady could manage. She just has to keep Ray leg-roped to the chair.
     
    And that was what our first fight was about. I put on some laundry and Ray took the opportunity to go to the bedroom. He is supposed to have me by his side when he walks for the first six weeks he is home as he is still tippy on his feet and the fractured pelvis is not entirely healed. I need to write it on posters all over the house and record it on a continual loop and flash it across the television screen: "Ray, please do not walk unless Sue is with you".
     
    So if you see a rocket crossing the upper atmosphere trailing what looks like washing that will be a banner reading:"Ray, where is Sue? She should be right beside you."
     
     
  21. swilkinson

    holding pattern

    By swilkinson,

    Ray is back in the main hospital for a couple of days while his arrhythmia is checked out. It may be nothing major but like arterial fibrillation it is known to throw clots and cause TIAs so they decided to look into it. He had a routine blood pressure and pulse check yesterday and he was way beyond normal. He was taken to the major hospital last night but put into emergency care for 24 hour observation only. If he has a further episode they will re-admit him but this time to coronary care.
     
    Frankly this is very disappointing. He was coming home on Tuesday being declared as fit as they could make him. I am just about over all this and now something else happens. He does have these episodes at home though I always thought it something to do with his diabetes. He gets hot, complains about the heat (this can even be mid-winter) so I take some clothes off him, put the fan on him, give him a drink and within half an hour he is back to normal. Now it seems this is his heart racing and the arrhythmia not the diabetes. Well bless my soul, it's back to the Nurse Susie role again. Would I please buy a thermometer, would I consider a blood pressure machine? NO!!!!
     
    So here I sit, waiting for the hospital to call and tell me what they have decided. I could go in and sit with him and get under everyone's feet but I don't know what good that would do. Last night Ray was in a constant twist, as soon as his heart monitor was connected he took one of the leads off, he said there was a funny beeping sound in his ears. Then he fought the oxygen, said they were trying to burn him up by putting hot air in his lungs. He finally was given something to eat and calmed down.
     
    I think the dementia kicks in whenever he finds himself in a stressful situation and he starts reacting in the way a small confused child would. He reacts to me as if I am doing a lot of this. He doesn't see it as someone trying to help him. Usually if I talk softly to him for a while he will relax and calm down.
     
    At last someone more senior than the trainee doctors in ER came along and laid out a plan of action. Yes, even more medication will fix the problem, and it is this one if it is this and that one if it is that. My mind said :"OH yeah?" in that cynical way long term caregivers have. The question never answered is :" And what will the long term effects of that drug do?". I don't want to learn to live with Ray vomiting, having more severe diarrhoea etc. Been there, done that. Ray is the compliant patient when the important doctor is around. Though he seems to have forgotten ever being hot now.
     
    I came home late and felt like just diving into a deep dark hole. No, this is not depression. At dementia group we had a lecture on the difference between depression and sadness. I guess sadness kicked in because I saw the future again - Ray acting childish, more care issues, more problems, more tests, less time, less money less freedom. And if anyone is wondering as a full-time caregiver, YES, it IS all about me. How I cope determines where Ray spends the rest of his life.
     
    So this is Saturday, end of week seven. And nothing much is sure any more. But with a bit of luck he is back to Woy Woy Rehab, still discharged on Tuesday. I can hope can't I?
  22. swilkinson

    stone walls

    By swilkinson,

    " Stone walls do not a prison make,
    Nor four grey walls a cell"
     
    ~~Author unknown~~
     
    I've been thinking, well that was what I do in the night when I don't sleep. I've been thinking about my life without Ray. He is still in hospital and will be for another week. AAARRRGGGH!! How long will this continue? Anyway I have been thinking about what I have been doing for the past six weeks and think mostly I have been waiting, waiting for Ray to come home, waiting for people to ring me back, waiting until it is time to go down and visit him.
     
    Ray has been home with me for seven and a half years. He came home in September 1999 after 4 1/2 months in hospital after having two major strokes four weeks apart. I spent every day just about with him in hospital, rehab etc so that I could be his cheerleader and ensure that I knew exactly what was going on all the time. This time I have had a few days off as boredom sets in very easily for him, he gets tired very quickly and I think he feels he is better alone a lot of the time. That is a slow change that has happened over the seven years, partly because he needs to have a lot of quiet time to heal and partly now because of the dementia.
     
    This leaves me with a lot of time on my hands which I use doing handicrafts of various kinds, coming here to Strokenet and doing housework and whatever else needs my attention around the house. I thought that while Ray was in hospital I would feel freer but it doesn't seem to have worked out like that, I think because he is always hovering at the back of my mind. It is impossible to recapture that care-free pre-stroke lightheartedness I was once famous for.
     
    In our lives prior to Ray's major strokes some of my friends thought that I was a bit of a clown. I always treated life as a bit of a joke. I could always see the bright side of life. For some people I was "Susie Sunshine" and being thought of as "religious" as well they found me a bit hard to take. I guess the years of caregiving have whacked that out of me. I still have a sense of humour but it is more basic now, the flights of fancy rarely happen. Even without Ray alongside this seems to be the case.
     
    I think I've built myself a prison cell. It is a large roomy comfy one but at best that is what it is. I have freedom of a kind yet I don't know how to use it. I think that is the case with some of the survivors here as well as some of the caregivers I have met in other support groups. They too have a large roomy prison cell called "home". They all spend a good proportion of their lives in the caregiving role and use some of their downtime wistfully thinking of all those things they could just do if they were free but don't know how to unlock the door and get out of there.
     
    I am going to see if I can get some counselling on this issue. Ray will be home next week and my life will resume the caregiver role. I may or may not get further help, I may or may not get some respite. I may or may not be able to resume some sort of life outside of the caregiving role.
     
    This is not supposed to be a down-beat, depressing idea. This is supposed to motivate me to go back a step and look at the life I live as a caregiver and see if I can improve on that. Please don't say "never mind, things will get better" I am sure they will. I know it is hard sometimes to see what is before you and not be depressed but life is always a challenge. What we make of it is really up to us.
  23. swilkinson

    end of week six

    By swilkinson,

    This time of the year as the church goes into Lent, a season of depriving yourself to benefit your soul, and in our neck of the woods the transition into autumn (fall) it seems as if I become reflective again. It is a sometime thing with me. Mostly I live life from day to day, don't plan too far ahead, don't look too far back. After going on for eight years since Ray's major strokes I know the danger of planning only to have those plans dashed by another stroke, or another critical incident.
     
    Yesterday was the end of six weeks in hospital for Ray. Last week we were told he will come home on Monday, now it may be Tuesday or another day. There are still some final tests to do. On my part although I would love to see him home I know that he still is not stable on his feet. So it is probably safer for him to be where he is. And today when I had to run through the heavy rain to get into church I was thankful I then didn't have to unload a wheelchair and get Ray inside. There is a covered walkway but it is difficult with traffic backing up behind you.
     
    Ray was okay yesterday but we had a talk about the things he doesn't do. Due to the dementia he has now lost a lot of the ability to initiate. So during the past six weeks he has only been out of his room for meals and to go to the gym when I am not there. I am the one who goes to find a wheelchair and takes him outside. He agrees to this if the weather is nice but yesterday declared it too hot and one day last week declared it too windy. I explained that at home I will have to over-ride this as we will need to go out on certain days whatever the weather. It was not received well but I can understand that in the past he would have just refused and stayed home and since the stokes this has been a sore point, in his opinion I am always "dragging him around".
     
    This time he has had no further kitchen training, not that he makes anything in the kitchen now and little training with hand-eye co-ordination etc. There seems no concept of keeping up with daily activities. I know he is there primarily to heal but with Ray's combination of stroke damage and dementia it really is "move it or lose it" and I am afraid that he will not be able to get back to the simple concepts that make life run smoothly like carrying his cup from the table to the kitchen etc as all these things have been done for him for the last six weeks.
     
    I left Ray watching a movie with a younger amputee. The weekend Activities Officer had asked "everyone in the place" to do this and Ray was her last hope. I don't think he would have done it except we were sitting in the area where the movie would be shown. It was a Bruce Willis movie so should have been okay. The young amputee, probably mid-forties, said he would like to see it. They were promised snacks and drinks so I hope they enjoyed that. It is so hard sometimes to get people who are in pain to relate to each other. With Ray's dementia his cheerful outgoing personality is slowly being replaced with a quieter one so he no longer reaches out to others in friendship as he used to.
     
    My week six was more of the same, visiting Ray, housework, a few phone calls and dinner out with girlfriends on the Friday night. The phone calls, visitors at the hospital etc are decreasing, this week he may have no-one but me go visit him. It is hard to keep up friendships etc when Ray's ability to relate to people is slowly disappearing. I know though that we will have those who stay friends for old times sake and that is good. Because travelling on this stroke journey without the help of friends would be very lonely.
     
    I am hopeful that in a few days time I can blog about Ray coming home. That has been the aim from the beginning. How that will go I don't know. I guess there will be what a friend of mine calls "shakedown time". But it is better to think optimistically that this will be the best thing for both of us.
     
     
  24. swilkinson
    Just recently I have been caught up in what we used to call "cat fights" in other words fall-outs between women friends. I say friends in that I have known these two women most of my married life, maybe thirty years or more. They are neighbours and friends. Just lately for an unknown reason their friendship has changed and one of them rang me early this morning to say she hated how I backed "X" up and how dare I? This upset me to say the least. But then I am a woman and I can be over-sensitive. ME? YES!
     
    So I was a bit blue when I fired up my computer then who should pop into my screen on Messenger but Bessy! She was her normal cheerful self and I thought what a contrast to my other two friends. Thank goodness there is always someone to cheer me when I am down, someone to support me when I am weak, and here in real time, someone to call me on the phone or pull me up in a shopping centre to say "hello". What would I do without acquaintances, friends and family?
     
    I rang my daughter early this morning to see how her husband was. He is just back home after a kidney stone operation and she said mostly sleeping still as he was weakened by the whole episode. She is glad to have him home at least to advise her as she struggles to look after the family, the home and the needs of her Salvation Army Corps. She is only new in town so is having to rely on the ministry from people she hardly knows but that is okay too. Angels come to us in all shapes, sizes and guises.
     
    I just got back from an old friends funeral. He was an invalid for many years. His nephew said he had all the illnesses you would find in a medical book and a few more they haven't discovered yet and that is about the truth but he rode his scooter through his neighbourhood dressed as Santa handing out treats to the kids, sang with our Lions Club's singing group in retirement villages and nursing homes and sold tickets not only to benefit our Club but other charity organizations too. What we here call "a good bloke". Helping others is sometimes frowned upon or laughed at now. We are "God botherers" or "do gooders" yet without those who are charitable and give of themselves and their time where would the poor, the down-on-their-luck, the abandoned and the lonely be? Charity dollars have to be raised by someone in every community.
     
    Thinking about all this makes me think I have to do more in my community. I know I have Ray to look after and that is a big job, but there is also in me a tendency to make it an excuse. "OH I'd love to help but I have Ray you know." so I wave my hand at him sitting in the wheelchair and sail off on my shopping trip. But that is not always the whole truth. Like everyone else I have 24 hour days and like everyone else I choose what I will do with them. So I can find some time to lend a helping hand, if I really want to. So maybe I need to work out how I can achieve this.
     
    We are after all friends to those in need. A friend to the poor, the weak, the lonely, those who need support. For at some time or other that describes us. We have all been in need of help ourselves. Just being here on Strokenet proves that. We all need support so we find it in the company of others. That doesn't make us "do gooders" does it? It just makes us human with all the usual human failings. Every one of us is frail in some area of our lives, just as each of us is strong enough to hold out a hand and help others. It has to be a two-way exchange.
     
    I thought of the "cat fight" when I saw the old friends sister-in-law and remembered that she went to school with my sister. A recollection of her and another five year old charging at each other in the playground and tumbling over and over in the dust came to my mind. She is probably still passionate about some issues and that makes for a little conflict in life sometimes. Think it over and see if the occassional "cat fight" doesn't leave us licking our wounds but also looking for a reason why what we say and do sometimes brings out the worst in others.
     
    I wish for you all, good friends, and the blessings that come from serving and supporting others.
  25. swilkinson
    February is the last month of summer and often the hottest month of summer too. From the end of February days start to seem shorter. Today was a good day - hot, not much breeze but a lovely blue-skied summer's day. Even in the late afternoon as I drove home from visiting Ray the sun was still hot through the car windows. If there had been anyone who I thought was right to ask I would have phoned a friend and gone to the beach. But sadly a lot of my present friends are older and probably batheing at after 4pm is not a part of their agenda. The boys have gone to Sydney, my neighbourhood seemed too quiet. Alas a Saturday night alone is my lot today.
     
    I will be glad when Ray is home and the trips over and back are finished. I am just hanging in there right now. At the family conference on Thursday a discharge date of February 26th was proposed. Hopefully we will have the occupational therapist who also assesses home safety come here with Ray on Tuesday and make suggestions of anything further we need to change and then the following Monday I will bring him home. I know this is not going to be easy, he isn't strong, is frailer than I'd like and I know it will be a battle for the first few weeks. But home is where he should be.
     
    Ray had three visitors today, I was there for an hour and had him in wheelchair out in the back courtyard and my sister and her husband came. They had been on a lovely trip across the mouth of the Brisbane Waters and over to the northern suburbs of Sydney by ferry. They had an hour's stroll around the foreshore and caught the ferry back. They ate at a little restaurant near the ferry terminal. It was a perfect day for such a trip and I did feel a tiny twinge of envy. But like a spark from a distant bushfire I jumped on it quickly before it could catch hold. Life is the way it is, and ferry trips wouldn't seem to be in the travel plans any time soon.
     
    Ray is now walking on the quad cane with single assist. He transferred from the chair to the wheelchair and back again with just some instructions from the nurse, she didn't hold on to him. He seemed confident about it. He was quiet and did not join in the conversation a lot when he had the three of us there but did talk to me a bit on my own. That is I talked and he responded but his responses are minimal now, he rarely ventures an opinion or initiates a conversation. That could be the dementia rather than the stroke damage. It is a long way from how life was even a few years ago and I am really feeling that now. How it is to be lonely but not alone.
     
    The week has gone fast I had one day at home, busy all the others. There was a garage sale (yard sale) to raise funds for our Lions Club this morning and I put in four hours selling books, it is not a big money earner but I did sell a lot of them. Only had three out of eight boxes full to repack when I had finished. I resisted the urge to buy a heap for myself and just brought two home. How is that for restraint! There were plenty of customers in the first couple of hours but it slowed down after that. Who wants to be inside when the day was so glorious?
     
    Next week we bury one of the most popular of our Lions Club members. Col had been in a wheelchair for many years. He had a large four wheeled scooter and was a familiar figure in our local shopping centre. He was a mighty seller of raffle tickets, a singer with our Club's singing group and a joker renown for his one liners. He could do a Louis Armstrong impression that brought tears to the eyes of old ladies at the nursing homes, clubs etc where our Club sings. They applauded loudly after he sang "Hello Dolly" or "It's a wonderful world". There is only one Col and on Wednesday we will farewell him with some tears I guess. Ray is sorry he can't be there as he and Col were pals of many years standing.
     
    So the hot days will soon slip away. The rains will come, hopefully soon, and wash down the dust from the trees, the bush will green up again as the worst of the bushfire season will be over. As you northerners slip into Spring we will slide into Autumn or fall as you call it. Each season has it's own sweetness. There will be shorter days but we will be outside enjoying them more. Ray will once more be out on his own front verandah, reading a Readers Digest Condensed book and gazing at the traffic on the distant main road as I bustle around cooking, cleaning, doing the housework. And I guess being at his beck and call.
     
    With each day there is much to be grateful for.
     
    Sue.