swilkinson

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Blog Entries posted by swilkinson

  1. swilkinson
    This is a blog about Ray and about me as the two of us are never seperated even though there is distance between us. Those forty years are the glue, our memories, our family, our network of friends, colleagues and supporters all combine to bind us together.
     
    Ray has been in hospital a week now. The chest infection is just about cured although this one does seem to have a cough that lingers. Ray is looking much himself again. At this point of time it would be usual for the doctors to push for him to come home but he still needs some attention to some of the other underlying causes of his falls and increasing weakness so those are being looked at now.
     
    Yesterday I signed consent forms for him to have whole blood products in order for his anemia to be treated. I don't like blood transfusions as a rule but the iron tablets haven't made a difference and as he is loosing blood "somewhere in his tract" they need to give him a boost to make him stronger for whatever lies ahead. That may be a "look see" to pick up where the problem is in his system. An endoscopy may be a problem in itself of course. The doctors also want him back on warfarin (coumadin) again so in order to do that they need to find the leak or he will bleed to death. The choices are never good are they?
     
    Ray just sits in his chair by his bed and looks out of the window. It is sad sometimes to see him in that absent staring mode. I remember how animated he used to be, I remember the stories, the jokes, his quirky sense of humour. I remember the interaction between him and his mates, the rallying, the joshing, the male forms of teasing. Now all the mates are gone, as they can't handle the changes and as usual I am his main visitor again. It is quiet in his room, four people in beds but all of them old, in poor heart, in low spirits. The spouses and daughters come and go, the talk is quiet, it is a long way from what other couples in their early sixties are doing. I don't need "real age" charts to tell me Ray has moved a couple of decades away from where he should be right now.
     
    But like veryone else who reads this I also have those in my circle who have lost daughters to breast cancer, sons to automobile accidents, small ones to those diseases our society still has yet to conquer, simple things like ashthma attacks or viruses of unknown origin, so I am still aware that we are lucky to have come this far. In years past Ray's conditions like diabetes and osteoporosis would not have been so well controlled. The medicine available to us is improving all the time. We are not there yet but we are getting there. The next generation may not have to sit and watch their partners deteriorate the way I am watching Ray today. I sure hope not.
     
    I think my chest infection is almost done. The coughing through the night is the worst aspect of it as it is so disturbing. The sore throat, runny nose etc is just like any other heavy cold. The whole deal seems to have made me feel very weak so all I have been doing is a little housework and driving to and from the hospital. I haven't visited Mum at all in case this is something she can catch. And I don't want to hasten anyone to the grave by my need to see her.
     
    There will be more tests for Ray this week, hopefully some physio and maybe by mid-week he will be up on his feet and home. I am expecting contact from the continence nurse as obviously his incontinence is still going to be a problem. I chiefly need help in making the bed in a way that ensures a quick change and also setting myself up with the appropriate linens, pads, aids etc. The problems sometimes march across my mind when I wake up in the night: Ray's slowness, his memory lapses, his confusion, his lack of co-operation, his loss of continence. I can see Ray as a problem and not a person. And that is not good for our on-going relationship.
     
    Here on this board we all have problems. The problems vary to a greater or lesser degree and with some similarities. We all struggle in our own little world. But happily we can all be part of a loving and supportive community. We just all need that extra dash of goodwill to do it.
  2. swilkinson
    This was supposed to be my break while Ray was at Camp Breakaway but instead Ray is in hospital. He went in on Monday from Daycare where he had had a fall. Maybe he just collapsed, not clear on that one. Their reaction, definitely the right one, was to call an ambulance and send him off to hospital. He had had a temp the day before and a couple of falls but said he was okay to go and I took his word for it.
     
    They are doing a lot of tests to see if they can find out what is causing his current problems. There is never a simple answer but it seems as if the meds for arrythmia are not working and it has progressed to A-Fib. That has been complicated by the chest infection that he has so he has more weakness and his legs won't hold him up. The answer at the moment seems to be bed rest. It can be really boring sitting at the side of the bed of someone having bed rest I can tell you!
     
    I know if he were healthier with the problems he has they would be talking about a pacemaker but the nurses just tell me that they are working on the problems and when his temp comes down they will get him out of bed and the physios will start working on his walking again. In the meantime a heart specialist is going to look at his meds with a view to changing some of them ( have I heard this story before???).
     
    I went to the doctor Tuesday and got meds for my chest infection so hopefully I will soon stop barking like a dog and sleep some at night. I need to get back to health before I can have Ray back home again. We've all tried it the other way and know that it can't work if the caregiver is ill. You need to be 100% fit to look after someone 24 hours a day, and yes his incontinence is full on now.
     
    I did still go on the day trip I had booked for yesterday. The "Aged Concerns" nurse told me to go as it would be mostly a day of tests so I wouldn't be able to be with him much anyway. As it turned out he did have a couple of visitors from our Lions Club so that was good timing. I kinda enjoyed the day, it was to an area attached to one of the Sydney Museums where restoration is done and there were also some past exhibitions on display, included was a "back rooms tour". Of course the widows of the dementia group are the ones who can go on these tours so I was the youngest by a few years. I guess you could say it was a distraction for a while.
     
    I have that real lonely feeling again as the day comes to a close and I don't know what even the immediate future holds for Ray and me. I always face the world with a smile and try to keep upbeat but boy! at times like this I wish I could find a warm cave and sleep away the rest of winter and half of spring before I came out again. What a contrast with the way I was feeling a few short weeks ago. Just as well no-one has a way of seeing into the future or we would never keep on going.
     
    Thanks to all of those who are praying for us. It helps to know we have so many kind folk thinking of us, both near and afar.
  3. swilkinson

    something for me

    By swilkinson,

    People keep telling me I should do something with my time off other than visiting my Mum, shopping etc so I decided to do a course that was advertised as being free for Carers at one of the local technical colleges. The course is for seven Mondays from 10am - 1.30pm which means I can do it while Ray is at Daycare.
     
    Today wasn't day one as I had thought as there was an interview day last week, but I missed that as I had the visitors etc. But today was the first full class and a very interesting one too. It is being paid for by our Federal Government's Department of Health under the Mental Wellness Scheme. Most caregivers would agree that caregiving for long periods of time does send you mad so I can see the point in funding a course designed to take some of the stress out of caregiving.
     
    Today was story telling day. There were 17 participants so I heard 16 harrowing, hair-raising, sometimes very traumatic stories. Sixteen carers, most of whom were caring for more than one person, with a mixture of physical and mental illnesses, some of whom are life time carers as well are a powerful group to be a part of. A mother of a daughter and a father of a son had both cared full-time for their child for over 30 years! Makes my effort with Ray seem puny by comparison. The course conductor has been a hands-on caregiver for her mother and only recently returned to teaching so she has a wealth of experience also. I am expecting to get some good information from the group and maybe learn how to obtain the help I will need for Ray, particularly as the dementia progresses.
     
    I think in any support group I have belonged to there is always a wealth of knowledge. Today was a pretty harrowing day with all the sad stories but I could tell that a lot of people in the group will be able to offer help and advice based on their own experiences as it is needed. You do learn so much on the caregiver journey and it does feel good to pass that on to others. Another woman from my dementia support group was there too so we will be able to talk over anything we learn on the course. She cares for her mother and like me is going through the process of trying to get a balance of in-home care and Daycare that will allow her to have some personal time.
     
    Even the lunch today was paid for. Our course conductor joked that she must be the only person who starts the course with a party but she got some funding from the Minister for Health personally and spent it on food for us. It was nice to gather around the table and have half an hour of informal chat with coffee and sandwiches at the end of the storytelling. I think it was what we needed before we went home to pick up the threads of our own households again. In my friends case I am hoping that her dear Mama has been good for the professional carer today as she is a feisty old lady and a bit of a handful by all accounts.
     
    Last week was a bit of a let-down after the party was over, the visitors had gone home and the house was quiet again. It was dull, overcast and quite cold towards the end of the week so I got that "can't be bothered" feeling that seems to come along with that sort of weather. I need to go on with my cleaning, sorting out etc though. It is good if I can clean room-by-room when I have a week when there are not too many outside the house appointments. Of course we had all the usual happenings plus Ray's cousin's wife's funeral on Friday and that seemed to take most of the day. I do have to take Ray to the doctor's tomorrow to get his scripts updated and re-issued but nothing else major in the week. Touch wood..knock knock.
     
    Ray has been "invited" to go to Camp Breakaway again. He will be going from 12th - 15th August which is next week. At the moment I have no plans for the time but might go to the movies, out to dinner etc if I can find some companions to do that with. I'll ring a couple of older widowed friends and see if they are busy. I can't visit my daughter like I did a couple of years ago, not worth going all that way for three days. But I am sure I will find something nice to do.
     
    I keep thinking four more weeks of this weather and then things will slowly cheer up for Spring. I don't mind the short cold days but until the days draw out a bit I don't like the long cold nights. That is when I miss snuggling up with my hubby. We used to spend evenings just chatting and drinking hot chocolate and watching the old sad, sentimental movies together. Well I used to watch the movie while he fell asleep in his armchair. Now I find watching the movie by myself as he heads off to bed early isn't nearly as much fun. But I have to remember to be grateful for what I've got, which is much less of a burden than some others have to bear.
  4. swilkinson
    On chat and in the postings on the board I encounter many caregivers who are new to the stroke scene. Like most of us they were previously unaware of stroke and the effects that it has on families. Anyone who thinks that a person in isolation has a stroke and it doesn't have any effect on those around them soon gets disabused of that theory. We are affected in proportion to our liking or involvement with the person who has had the stroke. How deeply we are affected depends on the depth of our love and affection and attachment to the person. But we are all affected in some way. More so if it is a spouse, a child or a parent, someone who is important in our lives.
     
    Sometimes when I rush in to post a reply to the newbie I make statements that come out of my own experience. Sometimes it is not something they are going to understand or accept right away. Sometimes it isn't what they really want to hear of course. I never thought I was a fairy godmother and could wave my magic wand and make it all go away. I am on the same journey they are on, just further down the track. And maybe from that perspective I can offer support and advice and be a sounding board for others. I hope that is how it works out anyway. That is why I am a chat host and post whenever I think I have something relevant to say on the newbie caregiver threads.
     
    I have been on the caregiver journey for nine years and have gone through so many stages, loss, grief, denial, bargaining etc, I have done the reseach, attended the meetings...and do you know what? it still throws me for a loop sometimes. I go right back to the beginning of the cycle with each new thing that happens to Ray, if he has a fit, a seizure, what seems to be a TIA, another fall, all those things will recall the earlier events and I will for moment or two feel unable to cope, uncertain how to go on etc. I guess the difference for me is that I soon go into thinking mode again and work out what to do.
     
    On the whole we do very well with Ray's deteriorating condition. He doesn't have a long attention span now and his short term memory is not good but he can enjoy the moment and that is what counts really. Of course I am struggling with his erratic BMs and his slowness and his unwillingness to co-operate some days and his sneaking sweets that send his blood sugar readings sky high etc. But that is part of our realationship, we are a married couple who 40 years ago said: "for better or worse, in sickness and in health etc" All of this is just part of the reality we live with every day.
     
    My Mum, who has been on her own journey with Alzheimers for the past nine years, has now been in her room in the Dementia Lodge six years and is the longest resident there at present. To me she is just a walking empty shell now but I visit her twice a week and relate to her as much as I can, talking to her, telling her stories, even sometimes jokes just to see if she will smile or laugh. Sometimes I just sit rubbing her back or holding her hand. I take her magazines and read something to her or just turn the pages until something catches her attention. She may have macular degeneration and be half blind but without her being able to speak cannot be tested for that now. I sing as we walk around the inside walking track at the Lodge. That is so she knows I am there and looks at me from time to time. The staff are used to it now so pop out of rooms and say: "Hi Sue" as I pass by walking round and round with Mum. I try to fit in with what is going on at the Lodge as that is Mum's "home" now and the other residents and staff are her neighbours and her family for this part of her life.
     
    I have found through all this experience that life is what you make it. If you drop the "poor me" attitude and realise life is what YOU make it, there is still a lot of good in life. It is a new day every day of course and if Ray is unhappy and unco-operative not such a good day but today he was content to do whatever I did and that worked well as I had a breast screen appointment and then we had some lunch and a wheelchair wander around Erina Fair. So a good day. Now he is under his covers having a nap and by the time he gets up it will be dinner time.
     
    This is my life and there is no sense in wishing for another. There may be changes and challenges ahead but at least I still have enough intelligence to cope with it. And if the saying "two heads is better than one" no longer applies, one good mind thinking for two has to do the same job. Life is a journey and there is no sense in looking back along the way we have come and longing to go back to where we once were, nor is there any sense in sitting and sighing and saying: "Are we there yet?"
  5. swilkinson

    a golden day

    By swilkinson,

    Well, what a day this has been. I had such a wonderful day...and if you take the good with the bad, the good far outweighed the bad. It was a perfect day weather-wise, after a couple of days of rain the skies were clear and blue and remained that way the whole of the day. The little hall we had hired for the occassion was a good fit, enough people for it to look crowded but plenty of room between the tables so I circulated with ease. Ray sat near the door so got a kiss from all the females who came by. You ought to have seen his grin!
     
    The BAD news came early, one of Ray's favourite cousins who was always the life and soul of the party lost his wife this morning. She had battled cancer for nine long years and this morning breathed her last breath. So sad. It meant another couple also didn't come as they chose to go to him instead. Very understandable. So early in the week we will have a funeral to go to, whatever else is on I will push to one side as this one is important to all of Ray's family as his cousin was also for years their next door neighbour.
     
    The GOOD was legion. Trev gets a gold star for all his work, he was magnificent, my sister also came and helped, her husband minded Ray while we girls decorated tables etc. Most of the guests arrived close to time, a few who had put in apologies actually came to the party so we had close on 80 people. And naughty, naughty, a lot of them brought presents although they had been asked not to. I have some magnificent flowers, enough to put a vase in every room, some nice keepsakes and some cash to spend on luxuries. I am so blessed.
     
    Of course we had enough food to feed twice as many people as came, that always happens so sent some home with family members, froze some and now have to face trying to eat the rest in the shortest possible time. But as we are going out to lunch tomorrow I guess that will take some doing. And the boys did the washing up at the hall so there wasn't a lot of dirty dishes to come home with us. Now that is a plus! Luckily one of Trev's friends rang up to say he had some friends around and they hadn't had an evening meal planned so we were able to send them some of our left-overs too. The Subway and sausage rolls were particularly appreciated.
     
    Now there are "thank yous" to send out and people to contact who took photos so we have some as I didn't think to take a camera myself. We had some lovely photo frames as presents so I hope to have some nice photos to go in them to remind me of this happy day. I think Ray had a ball as the cousins who were all at one table came over and walked him over to be with them. They were telling tales of school days etc so I guess he did remember some of what they were talking about. And the younger of his two brothers and his wife came for a while too so that was a bonus as they had originally turned down the invitation.
     
    Our three grandchildren played with the four of their second cousins who were down for the afternoon while the oldies were entertained by the "KB Singers" the singing group from our Lions Club. They put on a program of old time hits from the war years, the 50's and the 60's and most people were singing along. Our kids went outside for a talk while that was on. "There'll be Bluebirds over the White Cliffs of Dover" is a long way from their taste in music but those in their 70's, 80's and 90's and our 101 year old guest tapped their feet and sang along.
     
    A party can be a funny event in a way as it is often a roomful of strangers with only the celebrating couple in common. We had invited a lot of our old church friends and some from our new church, Lions, Ray's stroke support group and a few friends from outside of those clubs so there was a large cross-section of our lives in the one room. I did think sadly how much my Mum , had she still had her faculties, would have enjoyed seeing some of her old friends there, and of course her children, grandchildren and great grandchildren. One of the things that surprised me is that a few people from one group recognised people from other groups, like we had some Presbyterians who were Lions and Apex 40 members, one lady who recognised one of the men as her son's former Cub leader etc. So the Central Coast area is growing but one is still able to see it as a part of a series of smaller villages.
     
    By the time we had cleaned up and packed up and were ready to leave we witnessed a beautiful sunset over the lake, a golden sky, a golden lake, the surrounding area also gold in the sun's last rays. It was our ruby wedding anniversary but it really was a golden day for both of us.
  6. swilkinson

    I wish....

    By swilkinson,

    I've been following the thread expressing the difficulties of living with invisible deficits and now Stu's new thread of wishing that you weren't carrying visible deficits that cause some embarrassment and make you the butt of awkward comments. Frankly I wish none of this had happened at all. Ok, ok, I would have missed out on you all as friends and supporters, I would have still been working and living in my own small revolving sphere but somedays I'd trade it all for ONE NORMAL DAY!!!
     
    I guess my blogs of late have sometimes expressed crudely how I feel about some of the new deficits that are appearing as a result of Ray's mixture of stroke damage and dementia. The BM problem is not going to go away so I just have to get used to it. But now there is the return of another old problem - left side peripheral vision loss is causing bumps and falls. So Ray is often bleeding from scrapes on his left side arm or leg as he continues to lean to the left and bump himself again door frames, projecting shelves, table corners etc. This also means I must walk close to his side again, not just walk off and do my own thing. This time I took the groceries in to the house while Ray was walking along the back patio and he had another fall. He needs me back walking close beside him. I need to walk a little bit behind, a little to the left.
     
    The future looks none too bright some days so after a few discussions with friends which always seems to end in them saying: "I think it is time for you to place Ray now." I have decided to shut up and just keep doing what I am doing for as long as I can. I tried to book some respite today but the place Ray usually goes is booked until December. I don't want to book him in somewhere else but may have to if I find my frustration, stress, anxiety on his behalf etc is building up to the dangerous level. It is my fault because last week I was supposed to get back to the co-ordinator about two weeks respite for him in September but didn't because I had other things on my mind. Mea Culpa!
     
    The family came on Sunday for lunch. We'd picked up Tori on Saturday for her promised "sleepover at Granmas" for the school holiday break and as it was the last weekend thought we had better make good our promise. She is a delight to have. She works on a program in her mind and sentences start: "For my next thing Granma..." and so Saturday slipped by with no trouble. Sunday she came to Sunday school and was the sole pupil. So she got a lot of attention from the super and me as I was the "helper" this week. She was attentive and asked the sensible questions so I was pleased she had been there. Basically her parents are not religious but they know we are and makes the concession that she can go to Sunday school while she is here, which she loves.
     
    Even though she was the only pupil we did the full lesson, read the reading, told the story, did the art work as an illustration. She did it all, asking the right questions as she went. Then at the end of the service we went into the church. The minister always asks the Sunday School kids to come up and tell the congregation what they had done. Tori was ready, she knew the story and the teaching from it. So up on the platform she went. The minister asked her a couple of questions but she became tongue-tied, all she could do was look at him with saucer eyes and nod or shake her head. It was a classic appearance. Luckily he took it with good humour and said to the congregation: "I guess we'll just have to take her word for it , she seems to know what she did." The congregation chuckled and clapped and back she came to me very proud of what she had done. It is good when our shortcomings are treated with kindness, I wish it was that way everywhere.
     
    I wish... all kinds of things. I wish Ray and I could have our planned retirement, the trip around Australia in the camper, those other overseas holidays we had planned. Ray without the strokes would have been kept busy helping the kids renovate their homes, he was always a Mr. Fixit. I would have had more time for the community work I always did both in the church and in the secular comittees and organizations I belonged to. With a full superannuation pension we would have had plenty of money to live with moderate luxury. No more scrimping and scraping to get the things we needed.
     
    But wishing won't make it so. We have to live with the realities, in my case of Ray's slowly deteriorating abilities and my increasing involvement in his care. I still think we live a worthwhile life, I just think it is mighty different from the one we had planned. And that is a way forward for us in a way. I was listening to an interview with a man who had, in his middle years, become an alcoholic. He eventually dried out and became a mentor for alcoholics. He said he had to go through the experience in order to be of use to a lot of people, people he would never have helped if he hadn't gone through the experience of being an alcoholic himself. I can understand that. We, caregivers and survivors on this site, have by our experiences, earned the right to speak of them. In doing this we can hold out our hands to people we would not otherwise have had contact with. We can in this way elevate the experiences to worthwhile life lessons.
     
    I guess I will never stop making my wishes but I will know that is all that they are and that no amount of invested time will make them any more real. I have to move forward, day-by-day, week-by-week, month-by-month etc I have to live this life I have been given. I can do it with a good will or a poor me attitude. I can do my best or turn over my responsibilities to others. It is my choice. So tomorrow, as today, I will once again choose to look after Ray.
  7. swilkinson
    Things are changing in our house again. Ray has gone from occassional incontinence to frequent incontinence in a matter of weeks. There has been no change of medication, no change of diet or illness to indicate why this has happened. I told the doctor what was happening and he rolled his eyes. He is reluctant to talk about these issues in front of Ray so I will have to make an appointment to go and see him by myself. That will be another way of "losing" my free time - using it to visit the doctor on his behalf.
     
    I am a strong woman. I have been an independent, working woman, I have been a mother of three, a homemaker, decison maker, community worker, sometimes all at once. But now I feel as if I am slipping away from the community back into the home as Ray's conditions make more work for me looking after him and I get more and more tired and stressed.
     
    Last night we went to our Lions Club dinner, there were the usual reports and a dilemma, our club had been offerd two barbecues to do on the one day. One of our older members stood up and harangued the meeting: "Look at you all, sitting here eating, where are you when there is work to do?...etc , etc. I know Ray and I can't do much now so I wonder if I should still be a part of an organisation I can no longer work and be active in? I'll pay our fees up to the end of the year and then make the decision and hand in our resignations. It is not something I want to do, it is something I have to do.
     
    Ray has also begun to have vomitting attacks, nothing major so far, just coughing up the last meal, choking on something crumbly, things like that. Again no real reason, just not handling eating in the same way as before. This is exacerbated by the fact that he hoards food and eats it in the bedroom. This is mostly food he has pocketted from the sweets dishes at Daycare. This morning I found a coughed up chocolate bar under the bed in an old icecream container put there for emergencies. I am presuming he did that yesterday afternoon when he went in for his nap. Hiding food is one of the features of dementia.
     
    While I was hosting chat this morning I heard a rattling in the kitchen and Ray was spilling a bottle of fizzy drink, luckily in the sink, as he was trying to fill a glass. It was a drink belonging to our son, not the diet drink which is always available for Ray. I am sure he knows the difference but maybe the dementia is clouding those issues too and the nearest bottle rather than the appropriate bottle is what he wants. He also took his night tablets at lunchtime instead of his lunchtime tablets which I had put on the table for him. He had the other container in in his pocket! My fault as I often keep them on top of a cabinet near the dining table, I guess I will find another place for them now.
     
    This is not a litany of Ray's faults and failings, it is a list of the things that are altering and changing the way I will have to function in relationship to him. I will now have to go through his pockets on the night of the Daycare session so I can remove whatever he has brought home. I have tried asking them not to give out sweets as prizes for "Bingo" etc but they don't want to do that for the sake of the others who can still enjoy sugary treats. I understand that but it does make life harder for me. I hate rifling through his pockets, it is against all those "privacy issues" laws I was taught when I worked as a pubic servant.
     
    Ray is taking up more of my time with doing laundry, cleaning etc. I am preparing foods more carefully and socialising, eating out, getting takeway etc seems less usual. I guess I would seem to be whingeing if I told my friends that going to an afternoon tea for a 90 year old is less fascinating and fulfilling than holidaying in Vanuatu or going on a Mediterranean cruise as they are? What did I do in a past life to be living the life I am now...I want to cry, scream, tear out my hair, cover myself with ashes. In other words I am once again mourning what might have been and not really enjoying life as I am living it now.
     
    In the old Testament, the Jewish part of the Bible there are a lot of psalms which I read over and over all about how the Lord resues us from the trouble and strife of life. I hear on tv shows how people respond to a crisis by yelling: "God help me" and in their excitement at a piece of great news will say"Oh my G-d" over and over as a means of expressing surprise and gratitude. And yet in my times of crisis I just don't know who to call out to, feeling in a way it belittles the God I believe in to call on him in this way. Where is my protector, comforter etc? That was once Ray, the person I am usually cleaning up after or hauling up off the ground. I dare not call out: "Mother" as some do having in my mind the mindless little old woman I visit on Mondays and Fridays. It is pitiful to think of her as my helper.
     
    For the caregiver there is often no-one to call on, no-one to come to her aid. It can be a very lonely existence.
  8. swilkinson
    Well, winter took it's time coming this year and we were all congratulating ourselves on another mild winter. But now the winds are blowing steadily from the south and the snow is falling on the Snowy Mountains and the Australian Alps and winter is well and truly here. Here I sit at my computer at the back of our house and it feels as if there is an inside frost. We only heat the front "living area" so it is quite cold here and I sit late at night wrapped up in a rug looking like a rainbow and feeling like a rabbit but at least I don't get too cold.
     
    The days are cold too and windy as well. Ray and I have had several good days and it has seemed much better than last week when we had some bad ones. He has had three mornings in a row when he has been continent and so my early morning moods have been much better and my temper much sweeter. I wish I could come to terms with the incontinence and it would feel "okay" to be down on my knees scrubbing carpets and floors. I don't know what makes that clean-up seems so bad. I have to find a way of changing the way I view it so I can be at peace with it. I know others here are able to do it and keep their sense of humour so I should be able to also.
     
    I have been reading on a few dementia sites as they seem to have a lot of information on the behavioural problems we face from time to time. I am glad Ray is not capable of violence at the level some survivors and dementia sufferers seem to exhibit. If he says cuss words it is mostly under his breath and he doesn't often yell at me. I know when he does it is out of frustration and that saying: " you always hurt the one you love" is often used as a justification, but I don't like that side of the disease. We all know how much more we can achieve in life if the person we are working with or alongside is co-operative, friendly and helpful and the same applies in marriage. I don't think I could stand it if Ray was constantly yelling abuse. I would just want to get as far away from him as possible.
     
    We have been quite sociable this week. Yesterday we visited a cousin of Ray's and had lunch with her. Her husband was at a meeting and when he came home seemed a little uncomfortable at first. But he is a storyteller and was soon remembering some of the good times we had shared and re-iterating that part of our history and Ray seemed to enjoy that very much. Ray even added a bit of extra information to one of the stories which surprised me. I guess with some prompting he could probably remember more information. It is partly that kind of response we all have when we see an old classmate or workmate and do that reminescing that mainly involves remembering a conbination of a specific time, place and action. I am always glad when someone takes time to involve Ray in a conversation.
     
    Today we had other old friends call in. I had left a voice message for them about the anniversary party so they dropped in this morning bringing photos of their grandson and some other family photos to share with us. I have known both these people since before I was married so it is good to rekindle some of those warm memories. I know people are busy living their own lives, I know they have parents and children and grandchildren to take care of and worry about but I am glad and grateful when they can share some time with us.
     
    I have just extended the invitation to our party to the members of the Stroke group WAGS that we belong to. I initially invited two members and their husbands. One asked me if I had extended the invitation to the whole group so I thought "why not?" after all they are like us and probably don't get as many invitations to go out as they used to. It means making more sandwiches and buying more soft drinks maybe but a dozen or so more will not make a huge difference, and as some of the people I expected would come have already tendered their apologies I think the others may take their place. And what is wrong with that?
     
    This is a lot like our wedding. Ray and I each had a packet of invitations to invite our side of the family. Unbeknown to my parents and I Ray bought a second packet and continued to write invitations to more and more distant cousins. That explains why we were to invite 100 people and had 130 accept our kind invitation! Luckily it was a buffet meal and that tends to stretch much further than a formal sit-down dinner would have done. Now we are inviting some of those who were at our wedding to join us again and have added some more recent acquaintances too. A good way to move forward into the future for us as a couple. 40 years, that is a loooong time to be married eh?
     
    Tomorrow is my "day off", a minder in the morning, Scallywags in the afternoon for Ray. It is also the day my friend gets her final verdict on her cancer diagnosis and then next week she gets the suggestions of treatment for her to make the final decisions about. I went to see her early on this morning. We had a few laughs, maybe because at this stage she needs to see the funny side of life, to balance out the lost, lonely feelings she has as she faces this new challenge in her life.
     
    Life is such a mixture of happy and sad, good and bad, isn't it?
  9. swilkinson
    I've been a bit down this week. Of course I have had a cold in the nose and that is a miserable feeling. I have tried taking remedies like head-ache meds to see if that helps but whatever I try wears off after a few hours and I go on feeling like a rhinoseros.
     
    The weather has been colder as we go into the middle of winter. It looks fine and sunny but there is that nasty undercurrent of colder air. I have all the doors and windows open today though as the house was getting a musty smell and I thought I would give it a good airing while it is not actually raining. Not that we have had a lot of rain, just cloudy days and some drizzle. Not enough to make hay with. But the good news for down south is that there has been snow, so all who can afford to take their kids to see snow these winter school holidays are no doubt down there now building snowmen and having snow ball fights. While most of the country is still in drought.
     
    My little friend who I take to church and craft has been undergoing tests and has been diagnosed with pancreatic cancer. She still has some more tests to do. She doesn't have a family of her own but has many nieces she has helped raise so they are rallying around her. I have also helped her keep some of her appointments. It is hard to see someone you like going through this pain and suffering. I guess we all have had cancer touch family and friends and so that is why we pass on the emails with the burning candle, put money in boxes for cancer research charities etc. Still leaves you with that helpless feeling though, doesn't it?
     
    I haven't had many replies to my invitation to our afternoon tea for our wedding anniversary on 26th July. I haven't sent out formal invitations, but I have sent out some emails and rang a few people, most of them say they will get back to me. I thought I'd celebrate our 40th as who knows if we will make our 50th? And if we do maybe our kids will throw us another party then, who knows? In the meantime I hope we get some replies in the positive so we don't have to have a food fight with all the left over food. I know Trevor is planning on a few special things and I have organised a cake so who wants some?
     
    There seem to be a lot of bad news stories in the papers of late. I know we've had concerns about rising fuel costs, falling stock markets and global warming but these are all things we know are going to happen from time to time. The price of fossil fuel will double, treble etc and we will all learn to live with it or go back to walking everywhere and having a brick chimney stack on top of our homes again. We, the human race, have done a lot of living over many centuries and are not about to leave Planet Earth. I, for one, will not use the car more than I have to if prices get much higher, but we have to do some things, like keep medical appointments, and I guess we will budget for those extra prices, won't we?
     
    I am trying to concentrate on the good things in life. I am blessed to have a roof over my head and food on the table. Ray may have disabilities but to date they have been manageable. I have minor health issues but compared to a lot of people I am superwoman. That is on my good days.....lol. So not a lot to complain about. But some days I get on my pity pot and stay there for a while doing the "poor me" chorus. Not an attractive sight I guess, so I will try not to do it, and if I do do it sometimes I will cut the episode as short as I can.
     
    Blessing no 2.....
     
    So roll on summer. Enjoy yours, you northern folk, your winter will come soon enough.
  10. swilkinson
    I am thinking of lining up for the Olympics in a new sport called "Clean up". This morning , Monday morning, is Daycare. The community bus picks Ray up at 9.20am. At 9 0'clock he was ready to go out to the verandah to sit in the sun and wait for them. I went on doing the laundry. A few minutes later I thought I heard a door close but thought no more of it until I heard Ray call: "Suuuuue" . Yep, clean up time and only eight minutes to go until the bus is outside our door. I won't go into the details but I reckon it was like one of those cartoons where you only see a blur as I cleaned him up, put clean clothes on him and just had him back on the verandah when the bus pulled in. If there was a gold medal for the event I would have got it easily.
     
    Apart from that life is good, the weather seems a bit milder so the laundry comes in sun-dried again. I prefer that to putting it into a dryer. The environmentalists have calculated the cost of drying a load at 85c so I must have saved a small fortune over time by letting the sun do the job for me. And with Ray's "accidents" I do a heap of washing every week now. I am aware now of course that I use Depends on him and that is an environmental hazard too but haven't thought of any way out of that. Some things you just have to do.
     
    I was able to spend some time in the garden over the weekend too, potting up, which means taking the plant out of a small pot and putting it in the next size up and adding some more soil to give it's roots more room and allowing it room to grow. As it is mild weather it is okay to do that now. I will reap the benefits in Spring. I have a heap of bromiliads to split up and repot and will keep some and give some away. I have three nice varieties and they all bloomed prolifically this autumn. I have an orchid just blooming which is odd as it should bloom in September. I am not good at raising orchids so think this is one that I got from an old friend who is a real green fingers. Anyway it is nice that it has decided to bloom. I brought it down closer to the house so I can see it and appreciate it.
     
    This time last year I was complaining about the cold. It is cold of a night but the days have been warmer for the last three days. It makes all the difference when you can go out in the sun and just feel the wamth on your back. The tree feller comes tomorrow to take the half-fallen tree down, grind it up and take it away. I am sad at losing a tree. I planted three of them in 1986, all too close together of course and in a position where we now need the sun to shine on our clothes line. But the birds that use the tree, the owls and bats at night, the shade it provided and just the pleasure of hearing the wind rustle in the treetop has given me so much pleasure. So sad to see you go, tree.
     
    The gardening is hard work. I need to redig a lot of the garden at the back of the block but that means moving the gardens and I don't have the energy for it this winter. The alternative is to dig out old long legged geraniums and clumps of tuber bells and take some cutting off the geraniums and plant the bells down the side of the house to brighten up the garden there when they bloom at Christmas time. Then I need to find some alternative plants to fill in the gaps up the back. One of the nice things about that is suddenly noticing that something new is flowering and see how that alters the outlook. It is special to be able to have even a little bit of garden around you when some people live in high rise and have no connection to the soil at all.
     
    We have a lot of bird noises as birds are pairing up already for the spring nestings. A lot of our birds stay as we have a mild winter here. They find shelter on the heathland that comes up from the cliffs the other side of the hill behind us. On a good day I used to take a walk up there and watch the birds fly out of the scrub and out over the sea before circling inland to find insects or flowers to feed on. It is amazing how much wild life there is right under our noses. And it just takes a few minutes of standing still and quiet to see any number of interesting interactions between the world of nature and the world of human suburban living taking place.
     
     
    And of course if I am really lucky I can drive by the beach and maybe sit a spell and enjoy watching wave after wave come into the shore. It is another way of widening my horizon and putting my troubles back into perspective. Like each tiny drop of water that makes a wave, each person here is connected to others to form a human chain, part of the Earth family, part of a larger planetary system, in a larger universe.
     
    Makes our troubles seem small and insignificant, eh?
     
  11. swilkinson

    the gentle slope

    By swilkinson,

    I have been writing a blog on this site for over two and a half years now. Sometimes I click onto "archive" and read back over the blogs expressing my past angst and frustration. I am surprised by my anxiety about something that later turned out not to be a disaster but happy to see that acceptance and even serenity is reflected in some of what I have written. By reading the comments as well I can see all those invisible hands holding me up when I was in danger of falling, Jean, Pam, Sandy, Sarah then Bonnie, Trina, Ellen, Kristen now Shirley and the rest of the chat group that keep me stable and connected. Thanks to a lot of thoughtful imput I have been able to utilise what I have experienced and turn it into valuable knowledge. I would never have done that without the help of a lot of you here.
     
    Ray's and my life over the past three years since the last stroke in May 2005 has been one of gentle undulations, there have been hills and valleys but not the steep slopes of the earlier years after the 1999 major strokes. We no longer define our lives by the strokes so much as by Ray's invalidity. There is no denying that he has had strokes, that he has been left with deficits that will never be overcome and that his life is maybe what one would expect in his early eighties rather than the mid-sixties. But this has to be accepted too. I am through knocking my head against the solid brick wall of what might have been. It doesn't matter what I THINK it is what is practical that I must follow. There are things we can do and things that we cannot do and I have to balance our lives using those as guidelines.
     
    Belonging to groups of all kinds helps me add width to our experiences. Our Lions Club, full of mostly older fellows who are still active in the community helps us to be a part of that wider community. Our barman, in his sixties, just got an Order of Australia medal for 37 years of working in the Surf Club teaching kids to become Life savers. How many good citizens has he set on the right path in that time? What a wonderful role model he has been. And there he is on our dinner nights serving drinks behind the bar as part of the fund rising to buy the next surf boat or the rescue gear they need to keep a popular beach on our lovely coast safe. Our Lions Cub helps out by giving donations in return, as well as paying the rent to use the clubhouse facilities. It is a mutually beneficial arrangement.
     
    Our craft group of older ladies also sometimes helps out through the Samaritans group housing project. Last year we cut up squares to make quilts for the local women's refuge so that some woman could walk into a room that looked homely and maybe for a few days forget her hurtful past and learn to live again. Last Christmas we packed parcels of personal hygene items, soaps, deodorants, body talcs etc to give out to the residents of local "guesthouses" and hostels for the poor. To some of those men that Christmas dinner and that gift was the first they had had in many years. One volunteer described how she cried when several men came over and thanked her profusely with tears in their eyes for "the best Christmas dinner ever". Ray and I couldn't be there handing out the meal but we were there in the packing and knew what we were doing was to contribute to anothers well-being.
     
    We have to try and find a balance this far into our life. We have had friends drop away, I've blogged endlessly about that, and family memebrs shun us and disappointments and disasters as everyone has. That is part of the human condition. But we are growing older and can now be philosophical about issues that once would have caused angry outbursts and tearful moments. It IS easier the further down the track you go. Ours is not the slippery slope of trauma but the gentle slope of ageing now.
     
    I think the last visit to our northern family gave me a bit of thinking time. I have realised that I no longer need to dash about as I once did. I was always a bit hyperactive and had to fit a lot into every day. My friends would say admiringly: "I don't know how you do it!" and I would take that as a compliment. I don't need that kind of praise now. For the caregiver there is little praise that means much. Of course some folk say: "You are marvellous the way you look after Ray." I used to hate this at first but now take it as if they are saying I do a good job which I think I do. If they continue: "I would never be able to do what you do." I always say that they won't know if that is true until the time comes. None of us do, read you own early blogs and see how far you have come in that respect.
     
    So I am willing myself to take things slower. As Sally said in chat tonight we, as caregivers are no longer able to keep up with the house and yardwork as we used to do. We have to hire help, accept assistance when it is offered and get by as best we can. We cannot allow our pride to get in the way, if we NEED help we have to accept it from whatever source it comes from. It is all a learning experience. Just like we had to have help when we were small now we have to have help for other reasons. And if there has to be a cheerful giver there has to be an equally grateful and cheerful receiver. To those of us who are used to helping others this is a bit of a turn-around but we can do it. It is just a different way of looking at life. Maybe in a way a less selfish one.
     
    I am willing to walk this gentle down hill slope with Ray for as long as he is able to function at home. I am no martyr, I know I have my limitations. I know when I am tired and cranky and not coping the load seems more than I can bear. I know that when I am rested and refreshed the load seems light. I need to be sensible, take breaks when I need them, keep myself fit and healthy so I am able to go on looking after Ray. I need to start building time off and time out into my routine.
     
    Ray and I have travelled a long way together, forty years and more since we first met, we will be celebrating our fortieth wedding anniversary on July 26th. Ah!! what dreams we had back then. Of course some, like having a family together have come true. And that is good. The trip around Australia? No. But we have camped under the stars and flown half-way round the world and done so many things together.
     
    Now, earlier than we expected in the hot summer of our youth, we have reached the twilight of our days together. This is the sit and enjoy the sun time, the remembering time, the time of mutual contentment and enjoying the peaceful silence before the sunsets. This part of our life is painted in softer, fading colours. We are travelling at a slower and quieter pace and I hope will be more at peace with ourselves. But maybe not, there may be snow on the mountains.....
     
    But Hey! this is not the end, life hasn't finished dealing with us yet!
     
  12. swilkinson
    It would be good to say I have settled back into the routine again but so far the routine has been missing as a framework to our lives. There was no Scallywags this week, the birthday party for our grandson that we had hurried home for didn't happen and today it is cold and windy and I guess the weeding of the garden will have to wait.
     
    I did my chat hosting Wednesday morning (Tuesday night Caregiver chat) and it was good to catch up with a few people who are regulars on chat as well as a few people I hadn't chatted to for a while. I find chat is a bit like the talking we do to friends on the phone, it doesn't stick to a topic but wanders from one point to another. In one way this is good as it means there is a variety of things to talk about, in another it is not so good as it doesn't really act as a support. I guess there is more support in the replies to blogs than in chat sometimes, other times there is a lot of support there.
     
    Thursday was doctor's appointment, Ray had to have some scripts and we need to go to the doc about three monthly for those. He remarked that Ray seems to have lost weight again. Ray has a problem with appetite. He ate about as much as our four year old grand daughter did while we were away, nowhere near what I would call a "man size" portion. I know this is partly because he is not active so does not burn off energy and get an appetite from that. I "sneak" in extra foods, like making him milkshakes or putting fruit and yoghurt on his breakfast cereal but he never seems to put any weight back on. Still I think on the whole he is pretty healthy so it is not a big problem.
     
    We went out with friends for lunch on Thursday. This was in place of our regular get-togethers with our old church friends, half of them only want to met occassionally now so just half a dozen of us got together. It was nice to sit and eat and talk and laugh a bit. I miss those casual friendship days now, they rarely happen in our day-to-day life. Ray is fine if I give him a half size portion and cut it up pretty small. He sits and smiles and doesn't talk a lot but as four of the women were really vocal I don't think his contribution was missed....lol.
     
    We went to the shops both Wednesday and Thursday afternoons for a couple of hours each time. This was because I wanted to look as well as to shop so we did half the shopping centre each time. I hadn't done much shopping the week before I went away so a lot of the staple foods needed to be bought. I work on a budget so am always pleased with good buys. We have a large freezer so I can stockpile what is cheap among the frozen items too, so if it is beef mince on special this week into the freezer it goes and is eaten in the weeks to come. So today we ate the pumpkin soup I made in the weeks before we went away, one serving down, seven still in the freezer!
     
    Friday there was no Scallywags so I just had three hours off. One hour I spent with my mother, two I spent at Dementia Support catching up on what is happening with other caregivers. I also talked about how we managed while we were away as that helps others who are not confident enough to take the person they care for away on vacation. I came back and picked up Ray and we went out to lunch. I thought I'd better do something special for him, I know he loves Scallywags and was looking forward to going. Next week he will hopefully meet up with his friends there again. He and I shared a seafood platter, he likes to share as he can be in control of how much I put on his plate. We have both always liked seafood and although the place we were eating out at is in the economically priced end of the market the food is always well prepared and highly edible there. So we both enjoyed it.
     
    Saturday was supposed to be a birthday party for Alex but Steve had to take over the weekend on-call as the person who was supposed to do it was sick. The funeral directors are very busy, being winter, and short-handed for several reasons. Luckily Alex at two years of age won't be aware of anything unusual and will get to have special food next weekend with a little luck. As all the Dads here know sometimes when the boss says you work you have to work despite the other plans you may have had for the weekend. So we just filled in the day. There is always housework and laundry to do eh?
     
    Today it is cold, with a blustery wind blowing. Not too many at church as wisely the oldies don't come out on days like today. After lunch I attempted some gardening but it was too windy. So there is reading and beading and playing on the computer. Ray is snuggled in his bed with an old bedcover over him he prizes as his winter warmer for nap-time. What a contrast with last Sunday when we had a lovely picnic at Centennial Lakes in Cairns with temps about 80 degrees. We had a chicken salad lunch and a walk around the lakeside dressed in the light clothing of summer and enjoyed the sunshine. Ah well! good times never last do they?
  13. swilkinson
    Only just home and it is after midnight. I am happy to be home but sad to have to leave my northern family behind. Ray and I had a nice time, quiet but surrounded by family. It was good to be with the grandkids in the midst of their everyday lives, to catch up with all their news, see how they've grown, have the time to sit and share a story or a joke or just play "bouncy ball" for a while.
     
    We did do some special things, we ate out, went shopping, walked along the beach in a couple of spectacular areas. It was nice to have someone else doing the cooking, supervising the shopping, being in charge of the household. It was nice to have Craig take over the pushing of the wheelchair, Shirley doing most of the driving. It was nice to just sit in the passenger seat and stare at the scenery instead of being in the driver's seat as I usually am.
     
    The best thing was just having time to read and relax. Because once everyone went off to pre-school, school and work Ray and I had the house to ourselves. It was good though when everyone came back home again. Granma and Pa became a great excuse for all kinds of excesses. If Dad came home and we were all watching a movie it was because "Granma wanted to". If the kids wanted to stay out of bed a few minutes more Granma reading them a pile of books was the reason. If they wanted icecream it was because Pa likes icecream. It was a lovely idea of course and a great excuse while it lasted. I was glad that Shirley and Craig joined in too and saw the situation as funny. After all it is all over now and normal discipline resumes tomorrow.
     
    I found it hard the first few days showering Ray in their tiny shower cubicle and getting Ray up and dressed early so we could have breakfast together and they could all leave the house by 8am. I showered Ray about 9am and it soon became part of the morning routine for him. Yep, we did have a few incidences of incontinence, three days running ( no pun intended) in the first week but I worked out how to do a quick clean-up and get everything back to normal again in double quick time. In someone else's house you just have to do it as quickly and quietly as you can. I did laundry most days as I only took one large suitcase for the two of us and that meant just four changes of clothes each. But wash and wear had to be dry quickly and wear again tomorrow for Ray at times.
     
    The Cairns Salvation Army Corps were very welcoming again. Shirley and I played the worst table tennis at the "Girls at Play" night. It was so funny apparently that some of the "girls" rolled on the floor laughing. I catch the ball more that I manage to hit it so the score was about 1000 to 1 against me in the ten minutes or so we played. We went to Home League and the regular meetings as well so it was good to catch up with old acquaintances from our last couple of visits. If I do say so myself my daughter sure knows how to preach a sermon too. And with a lot of Islanders in the congregation the singing is pretty good so most enjoyable being there to worship with them. I made a pledge to be a "prayer warrior" too so if you need prayer just PM me with a short request and I'll add you to my list each week.
     
    While we were away one of the trees in our back garden came down after a powerful wind blew up one night so tomorrow I have to assess the damage and see if I can contact someone to take it away. The house smells musty because it has rained most of the time we have been away, the benchtops need wiping down, the showers cleaned etc but who cares? I will get to that. It is as usual "one-day-at-a-time" time here. Why spoil a good holiday by letting the cares of the world choke all the goodness out of life? I am sure soon enough the normal cares and concerns of life will crowd back in on us.
     
    Of course there may be bad days ahead. There will always be good and bad days, whether we are here or away. Ray's confusion worstened for the first week, but by the second week he had settled down and was enjoying being away. The grandkids don't notice that he is different, to them he is just "Pa". I was able to do some serious talking to Craig and Shirley, the changes in Ray are more obvious to them. I maintain that I will keep him home with me while he is happy to be here and while my health holds up. I agree with Craig's assessment that there will have to be changes in our lives but the ultimate goal for me is to give Ray as good a life as I can.
     
    Maybe I'll see some of you in chat "tomorrow". I'll try to read the blogs, check out the posts and generally get back into the saddle again. But I'll take life as slow as I can for as long as I can and go on enjoying that "holiday" feeling.
  14. swilkinson
    Well, why is it that as soon as you think life is settling down it speeds up again? I have been cleaning, washing, tidying, to get the house ready to leave. Add a lot of cooking/freezing to do as all of a sudden everyone is leaving me vegetables and of course I have to process them all before I go away. At least now there will be plenty of lovely soup in the freezer for those "too tired to cook" nights when I get back.
     
    I am having some more trouble with the care provider. Why do they employ pople who don't listen? Then maybe they woud know where the cleaning cloths etc are and CLEAN UP AFTER THEMSELVES!! We had *H* a nice looking woman in her late thirties. She seemed competent enough but she shouts at Ray. I know that on a list of ailments "dementia" probably comes next to "deaf as a post" but he is not hearing impaired. So on Monday before I leave I will ring the case manager and explain yet again and maybe the next person will just speak to him in a normal voice.
     
    A full day tomorrow as we will go to church in the morning and I had said we would look after our three close-by grandchildren in the afternoon while their Mum and Dad go to the movies. I haven't given them a break for a while so don't begrudge them one. I know how welcome breaks for the "couples nights" were when I was raising my three kids. We had to be able to afford a babysitter every now and again so we did get those times. Just as well we can still help out in small ways. I'm looking forward to them being here.
     
    Ray has had a few days of extra confusion lately, don't know why that suddenly shows up again. He is also staying up later at night but trying to sleep in in the mornings so his timing seems to be out of whack. We will have to be up and at the table by 7am in Cairns so he will have to get out of that habit. Maybe as well I might get him out walking in their back yard, I won't have Jeff to exercise him so will have to try and keep him moving and motivated myself. (Even writing it down here makes that seems so unlikely).
     
    It is a big job looking after Ray while we are away. I know the family are there and not having to cook meals is really a plus, but I have to help him dress, shower him etc. I am still responsible for all the A.D.L's he can't do on his own. So this time I am taking his medications pre-packed ( we call it a Webster pack) so I don't have to sort them out in the morning each day. I will keep the clothes we are taking as simple as possible, mostly wash-and-wear to make laundering easier. With the warmer days clothes should dry quickly and easily. In tourist towns you can get away with just a few changes of clothes so we should blend in okay....lol.
     
    I visited Mum on Friday and together we did our normal multiple laps of the facility. I told staff I would be away for a couple of weeks. I went to visit my old friend in the hostel only to be told he is back in the hospital again. I suspect his heart is failing. He has just turned 90. He looked after his wife for eleven years, it was a big strain on him as towards the end he did everything for her. I was talking to his sister and she said he should have put her "in a home" a long time before she died. Probabaly true of course but like us he made the choices he was comfortable with. He has had a lot of illness in his life and I have a feeling he has not long to go now. Dear old soul.
     
    So tomorrow evening I will have one final re-check of the suitcase and pray for a nice quiet windless flight on Monday. There are hurricane force winds at the moment further down towards Brisbane in Queensland but the route to Cairns takes a big sweep inland so we should be fine....well I hope so anyway. I just love flying so that part of the trip is a delight to me. It is just that with Ray along it is not really the same. I still have responsibilities . I am not on vacation really, just having a change of scenery.
  15. swilkinson

    old memories

    By swilkinson,

    I went for a walk around my neighbourhood this morning. I do a walk on Tuesday and Thursday morning when the shower nurse is with Ray. The walk varies from 20 to 40 minutes depending on the weather, how long after Jeff comes before I left home etc. As I walk around my neighbourhood I think of the people who once lived there. The girls I grew up with, the young married couples we knew before we went off to the country, the teenagers our kids grew up with. It is a very pleasant way to pass the time.
     
    I was thinking this morning about a lovely older couple who once lived on the corner of my street. She was an Aussie, he was American . They met when her parents offered hospitality to the "boys" on leave in Sydney during the late stages of WW2 when "Cush" served in the Pacific area.
     
    "Cush" had originated from Philadelphia. I don't know his unit , I think he was a Sargent but couldn't be sure after all these years. They too had a daughter named Sue, always referred to as Susie, so she and I became casual friends as she lived in Sydney and came up quite often for visits as her parents aged and needed her help more. When her parents no longer could live unsupervised she took them to a Seniors Village near her place. Her Dad died and she then built another house and her Mum lived with her in a self-contained apartment. It was a good few years they had together and I kept in touch maybe once or twice a year.
     
    My favourite memory is of them at their small but comfy home. Jean would ring and say:"Come down for a cuppa after you put the kids on the school bus." So that is what I would do. Cush would tell stories of their travels, in their caravanning days or show me his latest "jewellery". He did lapidary work, tumbling gemstones for weeks in the tumbler in his garage and making pendents, ear-rings etc with the pretty stones which they sold on Saturdays at a local market.
     
    My favourite story he told takes place in the Phillipines at the end of the Second World War. He was an instructor and was asked to devise a course to help the boys who were now serving as peace keepers. A lot of them had left school early to join up and had little education. The Army decided they would use the time in camp to give them a little education to make their re-entry into American society easier.
     
    Cush had to devise a course to teach them simple mathematics. He asked his assistant to get him "bags of pennies" as many as he could get. He emptied them all into a basket. Then he would write up a shopping list on the blackboard and ask the boys to write down five items from the list, writing them down with the price beside each item. Then they had to come to the basket and count out the pennies until they had enough for the items. Then he would then say: "Now you have changed your mind and instead of this item you need a loaf of bread. Count up again and tell me how much extra that will cost." In this way he taught them simple sums that would help them in buying the things they needed when they got back home. It also improved their writing skills.
     
    He would finish this story with a twinkle in his eye. "Now those farm boys weren't silly. I started that course with six bags full of pennies and finished it with only one. Go figure."
     
    We are privileged to meet so many interesting people in our life time. Some we keep as friends for most of our life, some come into our lives for just a short time and some are just brief acquaintances but still leave a lasting impression. I think it was so sad that twelve months after her Mum died Susie died too still in her fifties. Her breast cancer was discovered too late to do much for her. It was such a blow, the loss of such a beautiful lady. I am glad she outlived her parents though as they could not have gone on without her.
     
    I have been blessed in knowing so many wonderful people in my lifetime. It is among the things I treasure the most, those beautiful memories.
  16. swilkinson
    Somtimes I am really dumb. I think I have listened to what a person has said but I haven't really heard them. Tonight Ray was asking me a question. Now he doesn't have aphasia but the dementia seems to be slowly robbing him of some language skills.
     
    "What happened to the orange thing?"
     
    "What orange thing?"
     
    "The orange thing you took."
     
    "The orange thing I took from where?"
     
    We did this for a while before I realised the "orange thing" was a half eaten candy bar that I had taken off the dressing table this morning. I had put it in the bin. Ray had suddenly discovered it missing and wanted it. He is a diabetic, he has a sweet tooth and he does hide food so he can eat it without me seeing him do it. Mind you it does show up as a high sugar reading so I usually do know he has had "extras".
     
    I know that the explanation was not satisfactory to him. He wants me to ask what I need to do with something that I know is his. He doesn't need me to judge his actions. He doesn't need me to be his mother. He needs me to sympathise with his needs and treat him as an adult. I failed the test this time as no doubt I have done countless times before.
     
    It is not easy being a caregiver. It was hard from the beginning to make the transition from wife, mother, worker etc to being principle caregiver and the one responsible for all of Ray's various needs. It was hard with his first stroke in 1990. Looking back now I can see it was a mild one as he was back to full-time work within six months. But it was the first ripple in our lives. The realisation that we were vulnerable, flawed in some unthought-of way. He recovered enough to go back to work but I don't think either of us went back to being as confident again. We were both aware of Ray's deficits. I compensated by taking over his inhouse chores and doing some of the yardwork too. He never recovered his energy levels so we didn't go on with our planned renovations etc.
     
    We had some good years from 1992 - 1998. Not so much 1991 as the first year post stroke was full of rehab and uncertainty as everyone's seems to be. I also contracted viral pneumonia and was down for six weeks with that. But we got back into doing most of the things we had done before, not all of them...sigh. But life was good. If someone had asked me if life was Hell then I would have said of course not. We were coping, not quite at the same level as before but doing fine. I worked, first full-time, then part time while I finished my Diploma in Theoology. From 1995 after I graduated I worked part time in paid work and part time in ministry, unpaid of course. But we both had a good life. Ray was independent of me, working, driving, socialising etc. That all seemd pretty normal at the time.
     
    Our two older kids got married in 1993 and 1994. About then I noticed my parents getting frail, Dad had been diagnosed with cancer in 1992 and I was doing more with them. In 1997 Dad lost his licence because he failed a test. The hormone tablets he was on made his hands shaky in the mornings and that showed up in his driving. Poor man, it devastated him. I took over taking them shopping etc. I squeezed that in after work or by working a half day and having the afternoon off. As a part-timer I could do that. I was so lucky.
     
    Then the 1999 strokes happened and all that has been pretty well covered in previous blogs. Moving Mum and Dad in with us, Dad's death, Mum's Alzheimers. And of course for Ray the hip break in 2000, the next stroke in 2001, then a kind of hiatus period when only little things happened, falls, choking fits, so many kinds of treatment and therapy to hold back the ravages of stroke. And another stroke in 2005, with the onset of vascular dementia. Then the fractured pelvic and cracked hip socket in 2007 and more deterioration in 2008....
     
    BUT life is not Hell, not for me and not for him. Life is what we make it. It is full of changes and challenges, it is full of sadness as our friends age and get ill or move away from us. We cope with deaths in the family and the isolation that stroke causes. But we cope. We get as much fun out of life as we can. Ray has his sunny verandah and his find-a-word puzzles, he has the few friends that still ring and come around. He has a good caregiver (me) who waits on him hand and foot and treats him like a little prince ( ok, not all of the time...lol). So he has deficits, but so do a lot of people his age for all sorts of reasons. And of course there are some of his cousins etc he has outlived despite their seemingly healthy lives. Some have succumbed to cancer, heart disease and strokes, all the things that usually start decimating the ranks of the over '60's.
     
    I can't say we have had a bad life. We have had some bad moments and I don't always deal with the challenges as well as I would like to. I have this ideal superwoman image that I try to live up to from time to time. Since 1999 all five of our grandchldren have been born and what a blessing they have brought to us. No-one knows how much they mean to us (except other besotted grandparents of course) and they have so enriched our lives. We have seen our children mature and take on new challenges like Shirley and Craig studying for two years and now out in full-time service with the Salvation Army. We are also blessed in our boys. They are not perfect, like us, their parents, they are flawed human beings but they are our flesh and blood as we love them and they love us.
     
    I think if there were a sliding scale with Heaven on one end and Hell on the other I would say we are closer now to Heaven than we used to be. Despite everything we have matured in our faith, in our committment to each other and to our family and to the community around us.
     
    I seriously don't think "Life is Hell after stroke." It may be for some people, but not for Ray and not for me.
  17. swilkinson
    A recent survey in Australia has put caregivers as a class, both professional paid workers and unpaid family members as the group with the highest stress of any job, paid or unpaid. I guess I am not surprised. For me it is the constant nature of the job. There is no end to the chores, no point at which I can say: "there, I have done it, that is that finished for now." and walk away, like you do in any other job. Because I am only one person looking after a person who probably needs three or four people to completely look after all his needs. I am always aware that I could do better, do things faster, put more effort into the job etc.
     
    Because I look after Ray and mix mainly with people who are 10-20 years older than me I am the recipient of all kinds of advice. Most advice is well-meant and starts off with something like: "When I was caring for my mother/sister/husband" etc. Everyone has a story to tell me and a lot of the advice is of the "take care of yourself" variety. Of course no-one manages to explain how you look after yourself and look after someone else full-time. I know they are all well-intentioned but I wish people would stop telling me to look after myself and offer to look after Ray for me instead. I know it is never going to happen, but it is a particularly favourite fantasy of mine right now.
     
    I think I am finding it harder now I have to shower Ray. Before his fall in January last year he was able to shower himself. He would pack up what he was doing and just go off and have a shower. But after the fall and the recovery, rehab etc that came after it it was necessary for him to have someone else shower him. He doesn't have the concentration to stand, turn, use the hose etc. It is partly a balance issue, partly a process issue. That is the dementia at work too. It was another piece of independence that he lost. With the dementia gradually increasing other things will slowly follow. It is sad but there it is.
     
    When I read all the newbie caregivers' stories I remember the pain I felt back then, in 1999, when Ray had the major strokes. I remember my anxiety, my eagerness for Ray to get better, to come home, for us to go on with our lives. I didn't realise what a changed life we would lead, how much work there would be for me, and how I would struggle with it. What we go through, emotionally, physically and socially is not in anyone's book on caregiving, there is so little advice for carers that is of a practical nature. I cared for Ray for the first seven years with no outside help at all, apart from the three day breaks at Camp Breakaway twice a year and a friend coming in for a couple of hours every now and again.
     
    Then I started to put him into respite to give myself a break, a time to wind down, relax, feel myself again. When I am busy being "Nurse Susie" there is no time to feel like the person I once used to be. I wonder what happened to her? She was nice, funny, a good listener. She liked a joke, laughed till she cried, seemed to have friends galore. She cooked a wonderful roast with all the trimmings and could throw a dinner party for eight or ten together with a day's notice. She was so good at keeping up a correspondence,answering messages, being a helper in all sorts of situations. She held down two jobs, one paid, one unpaid and people spoke highly of her. I wish I had a friend like her to help me out now. And to tell you the truth I liked myself as that person much more than the unpaid caregiver I am now.
     
    Then as of a year ago I finally accepted that I needed some inhouse help as well. I hated it when Ray looked dirty, unshaven, slovenly in appearance etc. I don't want our standards to drop or for others to see those changes in him and infer that I am not looking after him properly. And yes, I still do worry about what people think of us. So at least the shower nurse coming means it is not always my voice heard making remarks about showers, clean clothes, having a shave etc. And Ray is remarkably more co-operative for the shower nurses than he is for me. Though I think showering him in winter is going to be a bit of a challenge as he feels the cold and our house, being open plan, is only warmed in patches. Which is one reason I think we need to live in a smaller house sooner rather than later.
     
    The changing seasons always seem to bring in new problems. Like your northern winter ours has come in earlier than usual and colder. The temperature is falling earlier than usual and so we are feeling colder. Ray is harder to keep warm since the strokes as like many others he becomes icy cold down his affected side in winter. And he always wants to have light clothing on when something heavier would be more appropriate. He moves so slowly that the exercise and walking he does is not enough to warm his body up.
     
    It was not as warm today as earlier in the week when we enjoyed the warm afternoons out on the verandah. I guess that contributes to me feeling out of sort too. Today the sun was out, the sky was blue but it was colder than it looked. Ray spent some time on the verandah just the same. I went out for a short while, I find just looking at the view and watching the birds come to the feeder next door makes me feel better. I hate feeling cranky and out-of-sorts. I don't think it is sitting on the pity pot. More a build up of frustration over a lot of small things that I feel I have no control over at present.
     
    For the caregiver who stays and works on making the life of the survivor better there is a cost to that staying. It is hard to explain in a way as it is beyond the sum of all he/she does. It is partly the burden of dealing with the frustration of all the life changes and challenges that include physical, financial, emotional and societal limitations. There is a sense in which life slips away with every passing day...sometimes it seems like I live with the death of hope and the absence of joy. Someone once said that joy is an attitude. I look back at the "old me" and wonder how I could have been so care free. But that was both an attitude and a happy accident of life I guess, not an attitude I had cultivated, just a happy circumstance of a somewhat protected life. I wish I could go back there and re-capture that light hearted feeling, just for a while.
  18. swilkinson
    Yep...I am back. Due to a lot of unforseen circumstances both mechanical failure and ISP orneriness caused me to be blacked out so Trev set up a new ISP and late this afternoon I finally got access to the internet again. Like a boomerang you can throw me away but I'll finish up at your feet or hitting you on the back of the head! So watch out!
     
    What has occupied the past week or so? All sorts of things - doctor's appointments, hair cuts, the usual round of engagements that forms the framework of our lives. The glorious late autumn sunshine has made sitting out on the verandah with Ray such a pleasure. We have a "Biggest Morning Tea" campaign in May with people encouraged to meet together for a "cuppa" and donate money to the Cancer Council for research and so far Ray and I have attended two with two more to go, so our social life has suddenly improved!
     
    Then there was Mother's Day last Sunday and after we went to church we went over for a BBQ over with our married son's family. A bit of a mixed blessing for him though as he was "on call" for the funeral company he works for. Someone had to do it and he got the short straw. So he did three "pick ups", one at a nursing home, two from private homes. He said the third one was the worst as there was a large family in the house and much grief. It is a hard job when it is like that for the "removalists". Trev did the BBQ at his house in his place so we did not starve and enjoyed a family time with our daughter-in-law and three grandchildren.
     
    I did get some separation anxiety from being without access to my internet friends and did have a full day on the pity pot when the "blues" hit me so hard I thought I would just go away and not come back. That was partly from the feeling that I have been "too long" at this caring business and it was all too hard. Nine years and counting does not make that feeling go away. The years of experience just help me keep it at bay. And I get by with a LOT of help from family and friends. It never seems to get easier, just harder as you age. But that's love at work.
     
    And life does go on. Some happy days, some not so good. With the dementia Ray has good and bad days and it is hard to say why. Some things he does makes me want to scream, others seem to reduce me to tears. I had that one early morning when he decided to "look for something" in the refrigerator and picked up a large container of pumpkin soup and dropped it all over the kitchen floor. What a clean-up! But even as I scolded I could see his sad expression and knew that in some way he was just trying to help, to lighten my load. How very unfair life seems sometimes...to both of us.
     
    I booked our flights to Cairns for two weeks in June today. As I was booking them I was looking ahead to the trip, an hour and a half by car to Sydney, one hour (at least) to wait at the airport, three hours on the plane. It is hard on Ray, sitting for so long but if I take his puzzle book in my carry on luggage and keep him busy it will all go by in a flash. I try to cushion life for him as much as I can. With physical and now mental problems life is no picnic for him either. I have to remember that...if it is why me? it must also be...why him? too.
     
    I'll spend some time now reading your blogs and then read all the posts I have missed. It will take a while to catch up. But that is okay...life will go by anyway.
     
     
     
  19. swilkinson
    I don't know how many of you have dealt with having carers come into your home. This is my second time with that as I had carers for Mum and Dad when they came to stay a week and stayed 4 months for both of them and 2 1/2 years after that for Mum. So I had a shower nurse twice a week for Dad and some help when he needed transporting to radiotherapy or had other specialists treatment for his cancer. And when he died I had a four hour minder once a week for Mum. Without that and the respite she got I would have gone purely out of my mind. Looking after an elderly parent particularly one suffering from Alzheimers, as well as a husband with fairly severe stroke deficits is far too much for one person to do so a carer and some respite was really needed.
     
    In 1999 when Ray had his major strokes and stayed 4 1/2 months in hospital he had just got home when I got a phone call from Dad saying: "You had better do something about your mother because if this continues I am going to "top" myself." So I took them to live with me for a week, then sent them home. Dad broke his arm so I brought them back to live with me and apart from periods of respite here they stayed. I don't regret that, looking back I managed, hour to hour, day to day to keep them all clean, well fed and reasonably happy. I particularly don't regret having my Dad here for the last four months of his life. That time was really precious to me. I think it was to him too. Mum was no longer his problem, she was mine. So he could relax and just contend with his illness.
     
    Of course it was very hard work looking after three people with diverse illnesses, disabilities and needs. Dad slept out the back so I could hear him from the back bedroom which I shared with Ray. I got up a lot through the night as he lost his covers etc. I think a lot of the time he just panicked a bit and needed reassuring. Mum slept in the front room in theory but was up and down all night as she still is eight years later. She has the kind of Alzheimers which includes wandering and night terrors. She is "safe" in her dementia lodge now but then she was likely to do all kinds of things thinking she was helping me by cooking etc so I slept with one ear open at all times. But with the three of them I just did the best I could as every caregiver does. I would not recommend anyone looked after more than one person at a time. It is too big a load and you just can't give them all the attention they need as individuals.
     
    After Dad died Mum went into a mental frenzy and became very aggressive, distressed and difficult to care for. She never understood that Dad had died. She always thought of him as being "home" so would escape from me and walk home, six or eight times a day. It was only ten minutes walk away and on the same road so I let her go and retrieved her. In those days there was very little traffic on our road and she was "safe" to do so. Later I had to keep her here and that was much harder for me to do. So she went to Daycare and other respite places three days a week , then five and then into full-time care. It was a very hard decision to make so my heart goes out to all who have to make that decision on behalf of a loved one. There is no easy way to do it. It is simply a matter of deciding that the full-time care option is better than the care ONE person can give them. We are not able to stay awake day and night to care for someone so when it is obvious that more care is needed than is available then full-time care is the logical choice.
     
    When Mum went into full-time care in September 2001 I still had Ray to look after. Although he had his fourth stroke in May 2001 he seemed back to where he had been prior to that stroke within six months. He was much easier to care for then particularly as he could still walk reasonably well and for a short distance. Which is why we were able to do the twice yearly coach tours. He still had common sense, he could still hold a conversation. He was still interested in the running of the household and was still reasonably active. He had the ability to do things like make the beds, wash up, help with the tidying and cleaning. We were able to go on coach tours and driving holidays with me driving. We had one attempt at camping, but my failure to put up the tent properly combined with wet weather made that our last attempt. When at home I was still able to go out for walks in the afternoon when he was in bed. There was a lot more free time in our days as we were sharing a lot of the chores. And life was pretty good there for a while. We were much like other early retirees, able to do charity work in a limited way and join fully in activities with friends and family.
     
    But the 2005 stroke, which seemed to leave Ray with few extra deficits was also the start of his vascular dementia so his physical and mental decline became more apparent. I could no longer go off and do things by myself, and he no longer seemed as motivated to exercise, to help around the house or to show an interest in what was happening around us. It is hard to explain how dementia limits the activities of the sufferer so severely but it does. In a way it is like a fog coming down over a sunny landscape, the fog lifts from time to time but the feeling that life is good has gone. I struggle to make each day seem worthwhile. Sometimes we have really good days. And sometimes we just get through the day.
     
    So now Ray has have a shower nurse on Tuesday for an hour, Thursday for an hour and Friday for an hour followed by two hours respite. Ray also goes to Daycare on Mondays, 9.30am - 2.30pm. On the Tuesdays and Thursdays while the shower nurse is here I go for a walk. I have 20 minute, 30 minute and 45 minute walks I do. If the shower nurse is running late or needs extra help (a new nurse coming in has to be introduced to the shower room, where the towels are kept, Ray's dressing routine etc) I just do the short walks. Today I did the longer one which includes a fairly steep hill. That is when I feel my age. I am sure it does me good, keeps me fitter and healthier but boy! it also zaps my energy too some days.
     
    On Tuesdays the shower nurse is here from 8.15am till 9.15am. That is pretty early for a guy like Ray who would really rather sleep in. I like him to be up, dressed and have had breakfast and his meds etc before the shower nurse comes so it is an early start to get all that to happen. I start the day by waking him with the greeting: "Wake up Ray, it is Early Jeff Tuesday". Jeff used to be our shower nurse, sometimes still is but on Tuesdays usually isn't. But I can't change the name each week so "Early Jeff Tuesday" is still the Tuesday morning greeting. Thank goodness for Wednesday and Saturday which are often our sleep in days. Then Ray can leave getting up till after 8am. Later than that and there are other unpleasant consequences. Let's not go there!
     
     
     
    .
  20. swilkinson

    rememberance

    By swilkinson,

    This is the Anzac day long weekend here in Australia. Friday was a public holiday to honour all our past service men and women, particularly those who lost their lives in wartime service. We started off by remembering the Anzacs, the Australian and New Zealand Army Corps ( and all the other forces) who served in the First World War. And then along came the Second World War, and Australia has been involved in many other conflicts since then. So I guess Anzac Day here acts as Rememberance Day does in other countries. A day when we honour those who fought to keep us a free country.
     
    Of course in the actual march that takes place in a big way in the capital cities and in a smaller way in villages, towns and cities thoughout our country there are no soldiers, sailors, airmen etc from the First World War, and fewer each year from the Second World War, but there will always be men and women to march. Unfortunately there will always be conflicts on our fragile planet, and is some ways we will always be called upon to defend the weak, rallying alongside neighbouring countries, our traditional allies or trading partners to fight a common foe.
     
    In the Bible it says: "there will be wars and roumors of wars" and that is pretty right. There will always be those fighting for freedom, for land, status or some other good cause. Why? Who knows? Cleverer minds than mine have asked such questions since primitive times and there has never been an answer that would put an end to wars.
     
    Our days of joining the march or watching as the Dawn Service took place has gone. As we had Cubs, Scouts and Venturers (boys) and a Guide and then a Venturer ( our daughter) we had times of getting up in the dark and going off to the Dawn service. Ray wasn't in the Forces so he never marched but my late Dad marched every year first in Sydney in the "Big March" and then later at one of the local marches. That happened until the last few years when he was too stiff and then too old and frail to make it. So we sat beside him and watched the march on television, listening to the commentary and Dad's cry of :"I think that was old George on the end there, of course I could be wrong..."
     
    This year we have a new event starting as our grand daughter joined Joey Scouts and marched for the first time in the 10am march in our local town. It was raining so we didn't go in to see her but if it is fine next year we will make the effort. She asked her Mum why she was marching and was it important? Her Mum said it was important as she had people in both sides of the family who have served as soldiers ( my Dad), sailors ( her Mum's Dad) and in other ways. My Mum worked in a munitions factory in England throughout the war working on a lathe to make airplane parts as did thousands of other women. My Dad's Dad served in the Boer War and the First World War, Dad and Pam's Dad in the Second etc. My Dad was a POW in Germany for four years and didn't get back to England till six months after the War had ended. All of them made huge sacrifices to keep our world safe.
     
    Our daughter and son-in-law were both involved in Anzac services in Cairns. As Salvation Army officers they too uphold a long tradition. Many a weary soldier has been greeted by a "Salvo" with a cup of tea and something to eat, sometimes far too close to the front line my Dad used to say. So many soldiers have a soft spot for the "Salvos" and that continues right till today. Shirley says it is a humbling experience to listen to the old soldiers stories and realise the sacrifices they made, often at such a young age too, "to keep Australia safe".
     
    The rest of the weekend is really for reunions, family gatherings etc. This year this weekend is also Orthodox Easter which will make certain places busier than usual. And co-incidently it is also the last weekend of our school holidays locally, so the fact that it is NOT raining today after 12 days of rain straight is probably bringing rejoicing to a lot of households. No flags flying today but a lot of sheets flapping in the breeze on clotheslines all across the countryside.
     
    Ray and I went out with some friends yesterday afternoon so are taking it easy today. We spent some time after lunch on the verandah, reading side-by-side. I like to spend a little time with him doing something special every day. Sure there is a lot of work to do here but there has to be down time too, so if it is fine and sunny as it was today there is plenty of time to sit and contemplate the view, have a "cuppa" together and a bit of light conversation. After all it is forty years coming up in July.....
  21. swilkinson
    Because of shows like "Oprah", the "Rikki Lake" type shows I guess there is a feeling that everyone shares their ups and downs and some people share their most intimate details until you want to say " too much information!" But that is not the way it is right across the world. In every situation there are those who are happy to open up their lives for all to see and those who are quiet and withdrawn and keep ther lives and their thoughts about it to themselves.
     
    In England a person might say something like: "I'm sorry, we cannot have this conversation, I am a private person." and the subject would be dropped. Even in Australia, considered often a nation of extraverts the same applies. Some people tell all, some people do not. And yet I have always wondered if by shutting their thoughts up inside if they are missing out on the benefits of sharing their lives with others?
     
    I have been privileged in a lot of circumstances to be the temporary confidante of many people. This came about right from my teen years when I found that quiet, concentrated listening allowed others to express their thoughts to me. I have always as much as is possible kept their secrets. It is not my way to be a gossip and I like to think that you can tell me what is bothering you, I will give my honest opinion and then we will resume our conversation as if the subject had never been discussed. It is the only way to keep friends.
     
    There is a price to pay for this. You can become a burden-bearer. I was on the Lifeline telephone counselling phones for eight years, one session a week. In that time I heard a great many stories, some of them very tragic, some of them the product of an over-active imagination. It is amazing what a person will tell to a perfect "stranger" on the other end of the phone line, of events in their lives that they swear they have never told to family members. But they do need to tell it to someone, as a form of release and to unburden themselves. The trick is not to take on the burden yourself but remember that it is the property of another momentarily shared with you.
     
    Some of people's stories, like the posts and blogs on here, were an example of someone dealing bravely with events beyond their control. Over the years I built up a tremendous admiration for the person who looks honestly at the circumstances of their lives and deals with it as best they can. The "copers" in life have in my opinion won the same kind of acclaim as the "Bravery Awards" handed out to Heros.
     
    Through this site, dementianet and the two support groups I go to I have discovered more heros. They are the ones who grimly fight for a better way of life, they are in some cases ill-equipped to do so and do so against great odds. The aphasic man in our stroke group who gets a friend to record messages for him so he can play it and get his point across is one of my heros. The woman who has had many hospitalizations, is quite severely crippled but dresses in fashions that would be worthy of a French fashion magazine is another of my heros. Where she finds such elegant creations I do not know but it is a far cry from the traditional casual wear that invalids so often wear and really expresses her personality which despite her disabilities is as bright and gregarious as a rainbow parrot.
     
    In a past blog I told the story of my first encounter with the death of a peer at aged eight. I think that made a real difference to the way I lived from then on. I really love people, in all their many facets, and I try to get to know them and walk alongside them in any way I am able to. I do step forward if I feel I can be of help in any way. In some cases the help is not needed or appreciated but in the long run that does not matter. What matters is that there has been an encounter, a brief sharing that hopefully has benefitted both if us.
     
    Some subjects are almost taboos, death and dying, bowel motions ( a subject important in the life of caregivers...lol) the frustrations of a life half-lived. But it is in sharing these subjects that we come close to being of real help to people. Those casual "talk-about-the-weather" encounters do not help us to live, to grow or to move on. It is the encounters and conversations that allow us to broach the taboo subjects and discuss what is laying heavy on our hearts in the night hours that help us the most. Sitting by the bed of the dying the subjects of wills, finance, sexual expression, old enmities and future plans might all be a part of the conversation. The art of chaplaincy is founded on the art of listening.
     
    I don't have a "best friend" but I do have many people I do consider as friends, some on this site here, more in real time. How they think of me is not so important although it is nice when the friendship is reciprocated. What really matters is that we have had the privilege of sharing in each others lives.
  22. swilkinson
    Getting Ray from respite and bringing him home is the easy part. It is then settling back into routine that seems so hard. After all I have had "freedom" for two weeks. Freedom is something we take for granted for most of our adult life, it includes self-determination, freedom of speech, movement, the right to choose our own way of life etc. A lot of that is taken away from you when you have strokes or start to look after someone who has had strokes.
     
    Ray has always been described as "easy going", this was one of the compliments of the seventies, a period when we were young, recently married and raising kids. The easy going male didn't critise the meals, compare his wife to his mother, make a fuss about the use of the household budget etc. I was considered "lucky" to be married to a man who was "easy going". A lot of my girlfriends had husbands who were more difficult to manage at home maybe but more devoted to their business and better providers but we all agreed that the "easy going" man made the best husbands.
     
    Looking back over the years Ray was a good husband and a good father, taking us on holidays, spending a reasonable amount of time with the kids, sharing some of the household tasks, particularly the yardwork. I think we got along well with our neighbours and in our community because he was community minded and joined a service club with other younger men in it and so I got the company of other young wives. We did move away from our families for about ten years and unfortunately by the time we came back both his parents had died and his sisters and brothers moved away so he never had a close family. Which explains in part why we have little contact with them now.
     
    I think not having a close family is a real disadvantage after you have a stroke. Granted some families are a liability and can be abusive and unhelpful in all kinds of ways. But I am envious when I read of those who have the backing and support of their birth family and in-laws to help in the stroke recovery process. My sister has helped out from time to time but there have been other years when she has been mostly out of contact, busy with her own life and her own extended family. I can understand that as I know how absorbed I can get in our day-to-day life too.
     
    Our children, or at least the two who are married have families of their own so I can understand that that is their primary focus. Mum and Dad do feature in their lives as the "grandparents" in the case of our son's family, the only grandparents, but it seems the committment that we felt towards our parents in the seventies and eighties no longer applies in 2008. We do have one son living at home and he does help out in small ways so we are lucky to have that kind of support. It is great when Ray is flat on the floor and a call brings Trev to help lift him up again. And when he BBQs too, that is a real bonus. But Trev works in Sydney and of course has a life of his own on the weekends so is not here a lot.
     
    So mostly it is just Ray and I as a couple who live in this space and reality. We get up in the morning and the day begins. The week has it's routine and we go from home to the church, the shops, the doctor's and wherever else the week takes us. We have the Lions dinners, the meetings with a couple of other groups, including Ray's Scallywags group to give us other things to do, other things to think about. Both Ray and I have an opportunity to serve in our community still. Less than in our vigorous and active past but still the art of listening to others can be part of Ray's ministry as well as mine. And I volunteer as a fill-in at Sunday school, as a helping hand at Lions and here too so this is also a primary focus point for me.
     
    So why am I thinking of this now? I realised last night at Lions that Ray hardly focusses at all on what happens around him. He sits at the end of the table and interacts very little with the person opposite him apart from speaking when spoken to, mainly with a "yes" or "no" answer. As at home I bring him a drink and his food, cut up his food, get up for anything extra he needs. As long as he doesn't cough and splutter and he can manage to eat most of his food it is worth taking him out to the dinner meetings. I am sad though that there are many activities that we would recently have volunteered to help with and no longer put our hands up to be counted as part of the work team. That has reduced our usefulness to the Club and so I know that in the near future we will need to make a decision about staying a bit longer or leaving the Club.
     
    Monday was a busy day with doctors' visits for both of us. Tuesday I did a lot of housework in the morning. I did manage to get in a walk while the shower nurse was here, it was drizzling a bit but hey! I don't shrink. In the afternoon we went to our craft group as usual. Today Ray was pleased that it was stay-at-home day and he could have his verandah time. He loves just sitting there doing his find-a-words, doing a bit of daydreaming too I expect. I did my chat hosting and enjoyed that, and some housework after lunch. Tomorrow is a busy day with two medical specialists to see and Friday has some other appointments too. So not the quiet life as retirement was once viewed.
     
    Asha, I am trying to go with the flow, Jean I am trying to stay in the present. I am trying to keep calm, count my blessings, take one day at a time, do all the things I tell others to do to stay focussed and manage our lives to the best of my ability. I just find it all a trifle TRYING sometimes!
  23. swilkinson
    I'm home. Funnily enough it is hard to take in that I am really home as Ray will not be home until I pick him up on Monday. Of course it is nice to be home but I did have a good time while I was away and left a tearful family in Cairns this morning so not home and relieved to be but with part of me up there with them still.
     
    Trev picked me up at Sydney airport after an uneventful three hour flight and it was out through the Sydney CBD clogged with Friday afternoon traffic, slow...slow...slow. Even on the Expressway between Northern Sydney and the Central Coast it was slow as a lot of people flowed north for what looks like being a lovely warm autumn weekend. So who can blame them for making a traffic jam of the arterial roads to get away from the crowded city?
     
    I had a lovely time in Cairns, it was hot and humid, wet and mild, windy and wild, you name it that was our weather. But the dry days were beautiful and only four of the nights were humid so I survived. The grandchildren were especially pleased I was there and we spent a lot of the time together. This past two weeks were very busy for my daughter and son-in-law as Captains of the local Salvation Army Corps with the launch of the Red Shield Appeal and other fund-raising functions (it takes a lot of money to run their refuges, half-way houses etc) and so they were glad I could look after the kids while they were freed up to do extra hours.
     
    It wasn't all work and no play as they were able to have Monday and Wednesday off this week and we did a bit of sight-seeing. I still haven't been out on the Great Barrier Reef but we did go to a couple of lovely beaches and picniced and walked on the beach and had lots of fun. We also went to a strange place called Paronella Park, a "castle" built by an Italian at the turn of the century, it's parklands have been ravaged by cyclones but somehow the ruins are majestic, the gardens and surrounding "jungle" interesting historically and botanically. I was very intrigued by it and enjoyed it as a great day out. For those of you who have seen the movie "Sniper" that was shot there in the "jungle".
     
    While I was away I was getting over a viral attack that came towards the end of the week before I went with the usual "foggy feeling", headache, tummy upset etc. The first few days I rested as much as possible. I think my daughter was worried that I seemed unlike my usual bouncy self but I got over it and this week felt fine so did get some rest in as well as the usual rough and tumble of family life. I did get to know the new dog and cat quite well too. Both seemed pleased with the additional family member to pat and pet them.
     
    Away from the usual distractions here I was able to do some thinking too. I always think "I need to simplify", that is always my first thought, but how to achieve that end I do not know. I could picture my house with less furniture, less clutter etc but I guess I would have to pay out a fortune to get the extra storage space to have it half as neat as my daughter's present lovely spacious five bedroom home. The homes in the tropics are all open plan, painted in light pastels, furnished in rattan and comfy overstuffed lounge furniture. We visited another two couples so I had three as a sample and they all had built-ins to hide the clutter in. It's the way to go but an expensive thing to set up in an older home like ours.
     
    The gardens in the suburbs near where my daughter is living are all coloured leaf plants and lawns, not the cottage type garden I have here. That too is great in a place with plenty of sun and an enormous amount of rain. Here in the more moderate climate I can see that getting more coloured foliage plants might work so I'll work on that idea too. Being able to make a few changes often helps to brighten my life. As long as it is within the budget and not too energy consuming. Because I know that once Ray gets home and I have to take over his care all of this will seem too hard. But it is good to have some plans and dreams for the future.
     
    I missed you all, all my friends from Strokenet. I missed the daily glimpses of your lives, the angst, the triumphs, the everyday bravery of those living as stroke survivors or caregivers. It is amazing that I can be sitting here but my mind is thinking of you all "over there". I missed a 90th birthday party and a day trip while I was awayand a few phone calls. But I mostly missed the day-to-day routine that makes up the "Days of our Lives" here on the lovely Central Coast of New South Wales, Australia.
  24. swilkinson

    anticipation

    By swilkinson,

    Only three days before I go on holidays. It is a bitter sweet preparation this time. In one way I am looking forward to it, the family reunion with my daughter and grandchildren, that is a joy. There is the peace of mind of knowing I can rest in bed of a night without one ear open, not having to hop out of bed and start the day whether I want to or not. On the other hand it is hard to know how to prepare. Am I going into heat, humidity and rain or balmy autumn days? Hard to tell until I get there.
     
    And then of course there is getting all of Ray's packing done too. I know he is an old hand at Nareen now and they make him very welcome but he is still leaving home for a fortnight. He will be back in a room he is familiar with and our old friend will keep an eye on him for me. But it is still hard for me to part from him, I love him and want the best for him. I know I cope better after a rest so maybe this is the best thing I can do right now.
     
    I saw Mum today. I didn't see her on Monday so maybe I saw her with fresh eyes and I realised how thin she has become. When I asked the nurse clinician to check the files for me she said Mum has lost 10 kilos in the past year. That seems a lot of weight to lose without it being a cause for concern but I have seen the other residents there do it too, it is a change in metabolism. She assures me Mum is eating well and that she has no real health concerns. For a change Mum clung to me, usually she is almost oblivious to my presence most of the time but not today. It choked me up. She was like those small scared children you see who cling to someone else for comfort. But when I left she was okay, having her morning tea and "reading" her magazine.
     
    I have been reading an e-magazine on Alzheimers and as part of a survey they came up with the idea that caregivers suffer "anticipatory grief" over a long period of time and a "loss of autonomy". We all know that is what happens, we grieve for what our partner has lost and all we have lost because of the strokes. We also lose not just our freedom to be a seperate,self-determining person but often jobs, homes and in extreme cases everything we have. In the case of those whose partners have severe deficits or a mixture of deficits like the stroke/dementia combination in becoming a full-time caregiver the caring partner sometimes gives up the "right" to be a seperate person and becomes 24/7 focussed on the survivors needs, often neglecting their own needs.
     
    I read as widely as I can, on the net, all the mags available at my doctors and any brochures or pamphlets I see on Stroke or Dementia. Here I read the posts, the blogs, the bios, the Newsletter Lin so efficiently edits and any other material I can get that might help me understand stroke and the effects it is having on Ray, on me and on our family. "Knowledge is power" one of our local colleges used that as it's motto, I don't ascribe to that theory but I do believe in the saying: "forewarned is forearmed" so I "arm" myself with as much information as possible so I am ready to face whatever comes along (I hope). I also share when appropriate the knowledge I have gained to help others, just as many do here. It is a comfort to be part of a world wide support group.
     
    I did a couple of hours work in the garden this afternoon and you can hardly see any improvement. There was such a spurt of growth after a week of heavy rain a fortnight ago followed by a week of sunshine and the weeds appeared as if by magic and invaded every square inch of the garden. I guess what I can't do before I go will still be here when I get back but I'd love to have the time to get rid of them all NOW. That's another one of my faults, I want it and I want it NOW! My impatience is like an ingrown toenail, I have to keep on working on it all the time!
     
    And so this may be my last blog for a couple of weeks. That does depend on whether Shirl brings her laptop home so I can check on the posts and blogs as I did last time I was away. That way the "withdrawals" will not be too severe. But I will miss you. I will miss knowing what is happening and also the warm support so many people give me. I really appreciate it so much. Of course I have some of that in real time too from close family and friends, but they are not available for a chat before breakfast ( I had breakfast and chat this morning) or late at night to help me when I can't sleep and come on to read some of the recent posts. But I will have the family and with a little bit of extra effort they should tire me out nicely.
     
    In days long ago, we sent out "thank you" letters to those who had done us a service or given us a gift. It is hardly done these days but this is a "thank you" to all who will read it, for all you have done, or for just being there.
  25. swilkinson

    time flies

    By swilkinson,

    "Looking after Ray is getting more time consuming and I can see how people become prisoners in their own homes. It is sometimes easier to stay home than to keep putting pressure on yourself. Ray is happy on his verandah and going out is not always what he wants to do but I am the one who needs the social contact, without it I would go mad I am sure."
     
    This is a quote from a letter I just wrote to an old friend. And it is the truth. It is getting harder and harder to get Ray out now. Today he had a shower nurse come as it is Tueday. It wasn't Jeff but was a woman we have had before. I came home after my walk and thanked her and off she went. That is when I realised Ray hadn't changed into clean clothes. I hadn't had them laying on the bed for her, so she didn't change him. She didn't see he had a stain down the front of the trousers or if she did thought nothing of it.
     
    It is remembering all the things that has to be done on his behalf that is beginning to get to me now. If the respite carer asks him if he wants something to drink he says "no" but as soon as I come home he says he is thirsty. If the shower nurse asks if he wants his hair washed...clothes changed...clean socks... he says "no" so I have to change him again later if we are going to go out. As we were today, attending a funeral almost straight after lunch.
     
    This is putting more pressure on me to give the carer a list of the things needed to be done. Today's nurse said she thought Ray was doing the exercises for flexibility, I told her he is doing them to prevent falls. She said she didn't know he had falls....duh! I guess each one does not get enough time to read all the notes so doesn't really know much about the conditions of the person they are showering or looking after if they keep changing all the time. I sometimes wonder what use the respite hours are if I do the work over again myself later.
     
    Ray does very little of his own volition now. It is partly the increasing damage from the strokes and TIAs and partly the dementia causing him to lose the ability to initiate. So for most of the day I give out gentle instructions: "remember to wash your hands", "can you come to the table please?"," would you like some fruit with your cereal and then some toast?". It goes on all day until the last one:"would you like me to put the light out for you?" Despite what it sounds like it is not like having a small child as I have to treat him as my husband, friend, companion etc at the same time. If you are nodding here I know that means you have experienced the same thing with a parent, spouse or child. It is a hard line to walk sometimes when I just want to SCREAM at the slowness of it all.
     
    The funeral we attended today was for a man who turned 100 last year. We didn't know him well but have been friends with his son and family for many years so we went to share our support for them. It was a great funeral full of many happy family memories and a lot of laughter,of course there were tears shed too but he had truly died "rich in years". It is wonderful when the good memories outweigh the sadness.
     
    This is a busy week and I have a lot to fit into it to get ready to go away. This morning I took all the scripts to be made up so Ray has a fortnight's worth of medications for the respite. I suddenly remembered that my car was due for a service last week but that will have to wait until the week I come back now. There are two specialists appointments in that week too so that will be another busy week. I am beginning to wonder if there is an unbusy week ahead anywhere? Almost envious of that "shut in by snow" feeling that you have in the US in winter. Notice I said "almost"...lol.
     
    We had a nice Easter weekend. We went to a family BBQ on Saturday with our older son and his family (family picture in the Gallery) and my sister and her husband were here for afternoon tea on Sunday afternoon. Two church visits (Friday and Sunday) and a bit of a rest day on Monday...well it was a rest day for Ray... I did nothing much apart from the shopping, some laundry, a bit of gardening etc. As a caregiver there really is not such a thing as a day off. Just days when I don't do all there is to do. And that means it is still there to do later in the week.
     
    The side fence is up. The fencing contractor was clever as he just cut back my garden a bit at a time. It looked really nice over the Easter break. Today when I came home from the funeral most of it was piled on my front lawn..WAHHH!! Still I had said they could "cut it back as necessary" and it will all grow again...if I wait five years or so. The fence is a white picket fence with a brown trim, it goes the first 25 feet from the front boundary line so matches my neighbour's front fence. He is paying for it so I won't complain too much as he could have asked me to pay half. Not that he would have got the same kind of fence as he knew I would want something cheaper and less elaborate.
     
    Tomorrow I have another long list of things to do..and Thursday...and Friday. I hope to see a few people in chat as it will be my last one for a few weeks ...hopefully only two weeks away as planned.
     
    Sometimes time just passes, sometimes it flies.