swilkinson

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  1. swilkinson

    home again for Ray

    By swilkinson,

    Well, the holiday is over for me, and work starts again with Ray back home again. The Tuesday shower nurse has come and gone and Ray went straight out to sit on the verandah. All is well in his world when he is out there doing his word puzzles. I guess it is the one thing he really misses when he is away from home.
     
    Yesterday I finished putting up the last of the Christmas decorations before going and picking him up. As usual the bag was only half packed, clean clothes among the dirty ones as he had packed the bag himself. It is good he has the motivation sometimes to do something for himself. I'm not knocking that, just wish the aides would bag the dirty clothes first.
     
    We came home and had some lunch and changed into our Lions Club tee shirts as we were on ticket selling in the afternoon. It is good Ray still gets some "service hours" up by seling tickets. This has been a good year for sales as a lot of people indulge in dreaming they will be the winner of the stocking - imagine that - $4000 worth of gifts and vouchers beiing delivered on the afternoon of Christmas Eve! What a difference that will make to the winner's Christmas!!
     
    I remember when I had Mum living with me and we would come home from a time away, as we drew into the driveway the weight of the world would settle back on my shoulders. That is how I felt this morning when I woke up. Oh dear, Ray is here. It is not that I don't love him to bits, I do, but it is taking up the nursing, cleaning, cooking etc all the small parts that together make up the caregiver role.
     
    We went into the hospital where my little friend Beryl is to see how she was going and take a small Christmas present to her. She is scheduled to go into the equivalent of a SNF for two weeks while everyone decides if there is any way she can come back home. A certain amount of care would be government subsidised so she could get up to three visits a day from the palliative care team, up to five days a week. But whether that is enough care to enable her to stay home as seriously ill as she is I don't know.
     
    Ageing , particularly if you become ill, for an elderly or frail person who lives alone is a real problem here. The decisions you have to make as to whether you can remain in your own home or not are based on the fact that "care will be provided" and the reality of that is often not what you expect at all. With our experience of the shower nurses twice a week plus the shower and two hours respite on Friday I know how good and less reliable carers can work from the same team. The reality is that reliability, consistency and conscientious performance of the care depends on a lot of good will on both sides. I would rate a couple of our carers as the best, a couple of others as good and a couple of others well.... I guess they just fill in their hours each week.
     
    Our Christmas day is almost organized. Last night Trev did a typical pre-Christmas job - he cleaned out the freezer while searching for a missing piece of roasting pork. You all know that: "it is in here somewhere" situation when you have an old chest freezer with food inside jumbled in no particular order? Well we have one of those. And to find anything you are looking for is an amazing achievement. But Trev did it and now all the meats we will cook on Christmas Eve are neatly stacked where we can see them. I have bought some of the side dishes, the last of those will be purchased tomorrow, fresh salad greens, tomatoes etc. and heaps of fresh summer fruits. The salads will be made up Christmas morning, hopefully before church time and then it just all needs to be assembled when we get home. Thank goodness this is a quiet Christmas for us.
     
    And so Ray and I need to get used to each other again. It seems I had forgotten a lot in two week on how to handle a person with memory problems. From a fiasco this morning I remembered I have to tell him what to do simply, repeatedly and in such a way that he will actually do it. Then we will get where we are going without a wife who is flustered and muttering wildly and a sulky husband who is determined to be unco-operative. It is all in the way you handle the situation and the tried and true methods work best - keep it simple sweetheart and one step at a time.
  2. swilkinson

    holiday at home

    By swilkinson,

    It has been strange being at home without Ray. At first I couldn't relax at all, I felt as if I should be "up and doing" every day. After all time is precious and I don't usually have a lot of it. But this week I am begining to relax and wind-down a bit. I decide at the beginning of the day what I am going to do, divide that by two and start on the list. If the jobs don't get done I put them on tomorrow's list. I guess that is about as relaxed as I get. Maybe just maybe I have become the caregiver version of a workaholic - funny what thoughts come to you when you have time to think!
     
    Last week I had all the flurry of my Uncle Don's death, contact back and forth by email with the cousins etc. Then the sudden illness of my friend Beryl and helping out there. I went in to see her in hospital and she looks great, the meds are re-balanced she has been topped up with whole blood, vitamin shots etc and her yellow colour has faded and she is pink cheeked again. I know this is not a cure it is just a few weeks of better health but I know her sisters, neices and nephews etc are heart-set on her being well for Christmas so I am so hoping that happens for them.
     
    I have visited Ray four times so far in the hostel. I normally go away to visit our daughter when he is in care so only see him a couple of times in two weeks. This time I was determined to visit him as I do Mum, for an hour a couple of times a week. In a way this is to prepare us both for the possibility that one day in the future he will go into full-time care. I know it is coming now. I read the blogs of others it has happened to and I know somewhere in our future it is there. When the time comes I want to be able to handle it as best I can. I know all this is idle spectulation at present but need to be ready.
     
    Last night I took Ray to our Lions Club Christmas dinner which is also our end-of-year meeting and break-up party. I rang the hostel to prepare him as I knew he wouldn't remember from the previous day. He has a very short short term memory now, nothing from the previous day would still be remembered. He was waiting in the wheelchair but had not had a shave or combed his hair so I attended to that. I took him in the wheelchair, transferred him into the car and off we went. We were early which meant I had plenty of time to talk to members and their wives as they came in. It is good to have a time of fellowship, something I don't get to do a lot.
     
    We had a lovely evening at the party, a good dinner, fun and jokes that our Tail Twister (Fines Master) is so good at. The Lions who form the " KB Singers" sang Christmas songs and carols and we all joined in. It was a good night for both of us. I was a bit worried about his transition back into the hostel but the night nurse was waiting at the front door to let us in and took him back along the corridor in the wheelchir so I was able to not have to see him back to his room. I know his sugar reading will be sky high today as I let him eat the chocolates off the table but hey! it's the season!
     
    I also had a special visit with Mum on Monday. As I have said before she is mostly unreponsive now having lost all language skills due to the frontal lobe damage caused by the dementia. She has no language and little understanding of language. Most of the aides "act out" what it is they want her to do, like getting up or walking. On Monday morning they had a very lively rendition of Christmas carols and songs by a very flamboyant organist who sings and dances as he plays! Mum and I were walking round and round as usual but when we came back one of the aides grabbed us and said: "Dance mama, sing!" and to my surprise Mum picked up the side of her dress in her hand, like a little girl does and started to sway and mumble a tune. She was smiling and nodding her head and winking and generally having so much fun and enjoyment in what she was doing that it took my breath away and I had a hard job to stop the tears. Jingle Bells played on and on and we "danced and sang" together for the first time in many years. It was a little miracle to me to be doing that with my dear Mum.
     
    This week I am still trying to sort out our Christmas decos, do the last of the cards etc. I will do a BIG shop on Friday and try to make next week an easy week with Ray back home on Monday and just one shower nurse hour on Tuesday I will be much busier with Ray's care. And Ray will no doubt be unco-operative as he usually is when he is back from respite and will NOT want to do whatever it is we need to do. It seems to be the way he settles back in, to act like an unco-operatvie teenager and give me extra grief! Maybe it is his way of re-establishing the boundaries. I just wish he was not so obsstructive. But it is part of the dementia I guess.
     
    Like other bloggers I sometime focus inwards and the blog is all about me, my life, my disappointments, my grief and loss and how I cope with it. That is okay. Blogs for me are for venting and whining sometimes and generally sorting things out. I am a person who takes a long time to "just get over it". Maybe I analyze things a bit too much, try to keep in control and plan ahead. Hey! that is just me, take it or leave it! But I think I have a heart of compassion and a nature full of natural affection for others too so I can be a cheerleader as well. Life is a paradox and I am still "sorting it out".
  3. swilkinson

    doing what you can

    By swilkinson,

    In the past week, with Ray in respite I have been supposedly having a rest from my caring role. but it has not worked out that way. My Uncle Don in Canada passed away and I have been emailing people on his email list with the news plus ringing people here whose lives he had touched as part of his many visits here. Over the past thirty or so years he came out on a visit to Mum and Dad, and then to us every second year or so and stayed 6 - 8 weeks each time so he touched a lot of lives.
     
    Also my little friend down the road was sent home from hospital on Tuesday in the last stages of cancer. I have known Beryl since I was eleven years of age as she used to visit her sister one road over from where I lived. I also went to the same school as some of her nieces so I guess I am a "friend of the family" too. Her niece who is a nurse and various family members and a few friends have been staying with her to make a few days at home a possibility. I said I would help out as I have had Ray in care and so have been available. I am really glad I did as last night, while another niece was there she became really ill again and went back to hospital. Those four days at home may be the last she spends there.
     
    I was there Friday afternoon and Friday night and came home at 10 o'clock on Saturday morning. She was fairly easy to look after as she is not demanding but I can say honestly that I slept very little. At 4am Saturday morning she decided she was hungry so we sat on her bed and ate toast and and jam (jelly) and drank cups of tea. It made me giggle and I called it our naughty mid-night snack. But by late Saturday afternoon she was vomitting again so that is why she is better off in hospital now as the end approaches.
     
    On the forums I often read that people should ask for help and one of the sources of help listed is always churches and church organizations. Now I don't know about America but here in Australia the congregations in the main stream churches are ageing. Admittedly we are still able to do a lot of charity work but jobs like nursing people in their own homes or dealing with people with disabilities on the whole is beyond what we can manage. We do host dinners as fund raisers for various charities. We have just held our annual Disability Christmas dinner which was a great success. We also packed gifts and hampers for the disabled people who live in local group homes. I know this is much appreciated particularly by their caregivers. But when you realise those who cook, serve the food for the dinners and tidy up afterwards are mostly in their eighties and nineties it is a huge task to have 60 - 80 people to lunch!
     
    We also have an "OP SHOP" now I don't know what you call your charity shops the "Op" is short for Opportunity and of course getting good clothing and household goods cheaply is a great opportunity. They too are mostly staffed by the seventy to ninety year olds and the money raised supports various funds and foundations as well as local charities. We do it all with tremendous good will but with church attenders ageing and getting to be a smaller percentage of the community now who knows how long we will be able to continue providing the services we do now? I'd love to be a volunteer but I have Ray to look after and that takes a good slice of my time.
     
    As Ray and I are both Lions on Monday afternoons in December I am selling tickets in our Lions Club Christmas stocking in our local shopping centre. The Stocking has $4000 worth of goods in it mostly donated so ticket sales are brisk. But it is a lot of people-power to staff it for a month. Our Lions Club have a singing group and one of the members who also goes to the church I go to said they put on 80 performances this year. That is another big contribution to the community as they entertain at retirement villages and nursing homes, the holiday camps such as Camp Breakaway, charity dinners etc. They are great ambassadors for Lions and people love their harmonising and the jokes the Master of Ceremonies tells as part of the hour or so performance.
     
    I haven't managed to go to the movies yet, or put up the Christmas decorations or finish up the Christmas cards but I will somehow manage to do those things in the week to come. Plus I need to get my car serviced, set Mum's room up with some decorations, bring Ray out to go to our Lions Club Christmas dinner and anything else that needs doing. It won't have been the rest I planned but then when does anything go the way I planned?
     
    I don't think I am good at taking "ME" time anyway, after caring for Ray for so long I am simply out of the habit. So in this week as in any other week I will just do the things I can do and do them to the best of my ability.
  4. swilkinson

    the power of courage

    By swilkinson,

    Each time I go to visit my Mum I drive past a church bulletin board. This week's message reads:"Courage gives us the power to let go of the familiar." Now there is food for thought.
     
    Ray went into respite on Monday for two weeks. I hate to do that this time of the year, there is so much on and I can't really use the time off to go away or have a break. I am transport for a few of the church ladies and would feel I was letting them down if I suddenly couldn't take them to meetings etc. And at this time of the year there is so much to do here at home, like putting up the decorations, sending out the Christmas cards, doing the Christmas shopping. At least without Ray I can cruise to the shops whenever I feel the need and fly up and down the aisles like a mad woman.
     
    Because of a series of bungles by the planners and others that book the respite at the facility I use I didn't get the week in November that I wanted. I was going to use it to attend the WAGS ( stroke support group) womens weekend, instead, after a lot of arguing of my case and my need for respite I got two weeks in December. It was a take it or leave it situation, so I took it. Now I need to use it to rest and relax and get ready for the rush of Christmas and the stresses of summer.
     
    I need time off from the problems Ray has that fill my days - his incontinence, his need for thickened juice, his choking and swallowing problems etc. I would have preferred one week as two weeks gets him too used to doing nothing all day and being waited on. I can't keep up that kind of service at home with a staff of one. So he finds it hard to come back home and have to go to the kitchen to get a spoon or if he needs a straw or go to the bathroom to wash his face etc. I still do all my usual things, I just don't baby him like they tend to do in respite.
     
    So far I haven't done anthing that could be construed as "me time". It has been housework etc. But this afternoon I did go and sit in on the end of a lunch for one of the groups I belong to. It meant I caught up with a couple of people I've missed seeing since my Fridays got so busy. Ray wouldn't have gone to the lunch so I had put in an apology but thought I'd go and have a drink with a couple of people I have made friends with who belong to the group.
     
    I couldn't get into chat today (Tuesday night Caregivers chat) but did manage to use the IM ( Instant Messenger) system to have a conversation with a couple of people. For those who don't know how to access that, go to Community links, double click on Who's Online, at the end of each members line you will see IM, double click on that and the Instant Messenger comes up and once you are in it is like one-on-one chat. You can IM several peple and have two or three chats going at once if you are able to concentrate well enough for that.
     
    Today I talked to Babsz, Shirley (Phoenix) and for a short while Donna and Sarah (spacie 1). Instant messenger doesn't replace chat but it is a useful way of contacting and connecting with a person. And it is available 24 hours a day, if you can find someone else that can't sleep or comes from a different time zone. Remember here on the east coast of Australia when it is 8pm in the chat room it is noon the next day here.
     
    By the way my cousin in Canada rang me up at 3am this morning. Her Dad, my uncle and my deceased Dad's one remainig brother, is ill and I had left a message for her so she left a message for me, then rang me thinking we were just twelve hours ahead and woke me up at three! She had said she would ring at 8am her time which she didn't so it was well after midnight when I had decided she wasn't going to ring and went off to bed. I am not much of a conversationalist at 3am!
     
    Distance can divide us and isolate us if we let it. I can't up and fly to Canada to see my uncle before he passes. I would love to do it, to repay him for the number of times he flew to Australia and stayed a few weeks to support my Mum and Dad. It would be lovely to see him one more time, whatever his present condition. But I have the responsibility of Ray. And they tell me the snow is fairly deep in Canada this year. So I am one of those "absent friends" we all complain so much about. Woe is me. I am not able to be as supportive to my cousins as I would like to be. So if she wants to ring me at 3am - so be it.
     
    I was chatting to Shirley (Phoenix) on IM . She was talking about the difficulties she has now that her eldest daughter has left home, leaving her with extra tasks some of them very difficult for a one handed person to do, like doing her disabed daughter's hair. I realised as a survivor and a caregiver for her disabled daughter what tremendous courage she has. She faces her day to day tasks so cheerfully. She is a real inspiration to me as are a lot of the survivors here. Sure we always have those who could probably do more to help themselves but on the whole they are ( or should I say YOU ARE) a wonderful bunch of people who have great courage and use that power to face the all the challenges of everyday living. Good for you all. Bravo!!
  5. swilkinson

    the pain of non-being

    By swilkinson,

    I don't write about my Mum much, just to say in passing that I have visited her or she is this or that. In a way the subject is just too emotional for me. I can visit twice a week and hold her hand and hug her and walk by her side but I keep myself from crying in front of her which is what I WANT to do all the time.
     
    My Mum was a wonderful woman, a warm tender person in some ways but a feisty fighter in others. She was brought up mostly by her mother as her father was absent most of her growing up life. In those days we didn't think of people as seperated they just "worked away from home". So her father who was in the Air Force just simply didn't come home on leave. He just came home twice a year and spent some time with his family and very little time with her and her mother.
     
    She and her mother lived with her grandfather and her mother worked on a farm, a large farm with cattle and poultry and pigs and fields of wheat and barley and an orchard and lots of people working it all. Her mother's concern was mostly the poultry but she also worked inside the "big house". Mum as a small child spent some time there too as her mum was able to have her with her some of the time. I guess it is fair to say it was a set up similar to those of Victorian times, the gentry and the workers who served them.
     
    Mum wanted to go into service herself and did so when she was 14, it worked out for a while but she ran foul of her boss, a High Court judge when he was "in his cups" (drunk) and was asked to leave so her mother got a hairdressing apprenticeship for her and she did six years of that. She met and married my Dad and eventually they had two daughters. Dad was a soldier in the British Army and has held a prisoner-of-war in Germany for four years. He came back from the War and found England changed so eventually he persuaded Mum that Australia was the place to be so we emigrated.
     
    Dad loved Australia, he was free of the class system, didn't have to take his hat off to the boss, could be and say and do what he pleased. Mum missed the British way of doing things, she knew what life was supposed to be like and the Australian ways of doing things were nothing like that. None the less I think she was happy most of the time. She had a home and a family and a good man to look after her and that was her world.
     
    In her later years Mum became attached to a Pentecostal church and because she played the piano and organ she became a leader of one of the ladies groups and did the Bible studies. I think that suited her, in my opinion the little "talks" she wrote for the ladies meeting were better than the sermons from the pulpit. They were more grounded and focussed on people's everyday needs. She became a great prayer and people came to her with their troubles and woes and went away feeling much better. I think that is why I became a person of prayer too.
     
    On the downside she smoked and how I hated that. She was the kind of person who couldn't be without cigarettes and woe betide someone who crossed her when she was short of money and out of cigarettes! So my saved pocket money sometimes went to get her cigarettes. I'm not elaborating on that except to say an addiction is an addiction. But she was kind and generous in other ways and so I never let that get in the way of our relationship.
     
    My sister and my Mum fell out and didn't reconcile for fourteen years. In fact my sister came to Dad's funeral and I hadn't seen her for most of those fourteen years. Now she is in my life again but sadly not in Mum's life. She says she is allergic to the cleaning products they use in nursing homes so can't visit Mum. Hmmm... I can't do anything about that and try not to worry too much about it. For some people there is a hurt in the past that turns into a black hole in their lives and can never be filled. Who knows why?
     
    I sat with Mum today and I thought about a lot of things, about the good times we had, about her ability to outrun us, out play us, how she fooled around and made us laugh until we cried. I remembered her poetry, her short stories that were never published, the music she would write and play for us but she always threw it away because it wasn't good enough, or so she said. She also did landscape painting for years and I have a few lovely paintings hanging on my walls and a few more that I alternate with those. A lot of people have a painting Mum did and gave to her friends as a token of her love for them.
     
    She had some mini-strokes and about ten years or so before Dad died in 2000 she began to show signs of something wrong. Not exactly dementia back then but forgetfulness and confusion. Dad slowly took over a lot of things that needed process thinking like shopping and correspondence and paying the bills. By the time he died he was also cooking, cleaning and doing the laundry. In the last few years of their life together her behaviour was erratic, and she could be aggressive and strange in the way people with dementia are.
     
    After Dad died I had Mum live with me for two years but I also had Ray with his stroke deficits etc and in the end decided to place her in a facilty that was dementia specific and could deal with her strange behaviours and allow her to be who she was and do most of what she needed to do. She paced round and round the corridors and still does, more slowly now but round and round and round. Is she happy there? Maybe...it is hard to tell now she no longer speaks, smiles or shows emotion. I know she is sometimes unhappy as she tries to tell me in her gibberish and when she can't she moans and tears fill her eyes and she looks like a small unhappy child.
     
    I sat by her side today and thought about how we think of human beings as sensiate and thinking beings. I wondered if that makes Mum a non-being as she doesn't have the ability to express, to show emotions, to communicate what she is thinking. I don't know if that is painful for her, I do know it is painful for me being with her and loving her as I do.
  6. swilkinson

    muddy feet

    By swilkinson,

    I wrote my last blog about being "BACK!!" and our internet connection went down again, or so we thought. It seems Trev's new modem keeps getting "lost" by his computer so you have to put the disc back in and connect it again. Then you are up and running for a while! I guess there is a basic incompatibilty there somewhere so for now we will do it manually and maybe find a workaround. It is a bit like getting stuck in the mud though.
     
    We've also had a series of storms the past few days so I have been turning off and unplugging devices in the hope that all will be preserved that way. I spoke to an acquaintance who also lost her modem the night we did so it seems as if the electrical surge was definitely the cause. What a nuisance this is going to be, turning everything on and off all summer! We need the rain, just not the electrical activity locally.
     
    The rain also prompted me to get some new gravel for the driveway as we have had a wash-away problem for some time. I could have the driveway renewed but it is a huge cost and one I am not budgetting for at present. We have so many household appliances etc that are way past the date when they should have been updated and replaced. Another thing you have to leave for a while on a limited income is painting the house and as that was done some years back and the wind and elements have taken their toll so I certainly need to budget for that in the next couple of years. The sea being just a couple of roads over doesn't help, all that salty wind driven rain also adds to the damage.
     
    Ray and I have had a series of mishaps the past few days. Most of them happened through ignorance of what a person with Ray's abilities can or cannot do. I guess if you see him sitting in his chair, shaved, hair cut neatly looking "normal" it is hard to understand that your cannot trust him to remember a message, to make a decision, to comprehend a situation and solve a problem. The care worker on Friday tried to make him do all of that when he thought I had three hours of care instead of four and panicked when I didn't turn up "on time".
     
    The care worker asked for my cell number. I don't give it out, it is for family only. Once I give it out my time out would be taken up with referred on calls. I want to be "free" in my respite time off. I know it is selfish of me to want to be "out of contact" but it is the only way for me to feel 'free". With all their supposed training and support the worker should be able to make the decisions even if Ray can't. Well, that is the theory anyway. Of course Ray was very upset by the time I got home "late" thinking something had happened to me. He was then in an unhappy frame of mind for the rest of the day. As the dementia increases Ray gets more uncertain about what is going on around him so relies on those around him to remain calm. It is hard to stay calm all the time but I mostly manage it.
     
    In order to get care I have to have a current assessment from the Aged Care team in our local area. My assessment ran out in October, and I have been trying to get it renewed. It doesn't affect my present care but I can't change providers or get more care without a new assessment. It is a real Catch 22 situation as despite many phone calls no worker has come to renew the assessment. I hate ringing government departments, I always get put on hold for long enough to read a large book only to be told to "ring "x's phone and you can leave a message and he/she will call you back". We used to have an expression "you can tell that to the marines!" I guess you all know what that means.
     
    Tonight we have another invasion which comes with the stormy weather. Those small winged insects we call "thunder bugs" or "minute flies". They can crawl in through the flyscreening on the windows and doors and soon form a cloud under the lights. They only seem to live for a day so in the morning the white surfaces are covered in them. Thay usually appear about late January so they are early this year. Another joy of living in a lovely climate close to the coast.
     
    Tomorrow is another day, the woes of today will be forgotten and a new batch of troubles will be set to take their place. No two days alike here. On 9th December it will be 18 years since Ray had his first stroke. I have been taking over the tasks he had to do in the house, the yard, with the family etc since then. Some days I am tired and drag my feet as if I am stuck in the mud. I know there are stars out there, some days I just can't see them.
     
     
  7. swilkinson
    Trev has one computer up and running, HIS, but he has loaded flashplayer and I am allowed to use his computer to do chat. So "I"M BACK"!!! Well, that is the good news for tonight anyway.
     
    Ray and I have just been out to a Christmas/end-of year do. Our old friends from Apex40 were a fairly rowdy mob tonight, but we love them dearly. We joined this group 23 years ago so we know most of the members well. Some of course don't respond to us as easily now and there is some awkwardness in that but most are great people to be friends with. Another member of the group had strokes two years ago so he came tonight in a wheelchair, escorted by his daughter as he is a widower. We hold our meetings in restuarants and now because of Ray and Lyn someone always checks first to see they are wheelchair friendly.
     
    Our Apex40 Club, as a group, have supported us over the years since Ray's major strokes in 1999. They arranged for our shower room to be built. The other bathroom contained a bath and a small shower cubicle which was nowhere near big enough for the shower nurse or me to walk right around Ray, which I think is the only way to give him a really good shower. Now it's easier and quicker to shower him. I think it gives Ray much more dignity, he sits and we work around him so he doesn't feel like a sack of potatoes being lifted and pulled around. Ray's life has changed since his mobility was compromised by the broken pelvis, I guess he feels more of a burden now, so anything that eases that feeling is good.
     
    I've started my Christmas shopping. Ray and I are pretty frugal as we live on a fixed income but as long as I shop carefully we manage well. I was brought up to look for bargains and make the most of the money we have so we don't struggle, we have a good life, just not a self-indulgent one. A lot of folk tonight were talking about the lavish entertaining they will do between now and Christmas. Once I would have found myslf envying them, now that is okay, I don't feel jealous or envious. I know Ray would no longer deal with a busy, busy lifestyle so I am content to just do the things he is capable of doing.
     
    Trev had his birthday today. I bought him a nice dress shirt to wear out if he has any "special" invitations. He came home as I had just got onto the computer and found a recipe for a "Chocolate Cake you microwave in a mug" so I tried it out and told him I had "baked" him a birthday cake! We cut the mug cake into four and sang Happy Birthday to him. He seemed okay with that. We'll take him out to dinner over the weekend sometime.
     
    Sometimes we forget to count our blessings, we are too busy looking down at the mud at our feet to appreciate the stars shining over our heads. I am blessed with friends and family that I adore. I could have lost Ray in 1999 and he is still with me, a little battered and the worst for wear but still by my side. I am so lucky. I have three children and five grandchildren. I know many people have no family so I am grateful for mine. I am not always in total agreement with them, I can disagree with what they say and do but I really love them.
     
    There was a saying when I was young: "Kind hearts are worth more than coronets". If you understand that against the British background of the plebs and the aristocracy ( the coronets) then it makes more sense. I think you find the best and kindest hearts in some of the lowliest places. Today when we were shopping a little boy dropped his balloon, his mother burdened by shopping, ploughed on. A Downs sydrome boy came running after them and returned the balloon to the crying child. A knight in less than shining armour but a fine example to all of us.
     
    I must get to bed, I never know when Ray will wake me for some reason through the night so value those first few hours. It is one of those things caregivers have to get used to, a part of the job. Today has been a good day and I look forward to more of them to come.
  8. swilkinson

    back soon

    By swilkinson,

    I wrote a blog straight from the heart last night, typed my emotions onto the blank screen and then lost the lot. Trev has my computer almost up and running, well running slowly. I need a new filter now, we replaced the modem that took the brunt of a lightning strike on the transmission box at the corner of our street during a mighty thunderstorm a week ago. Trev was in the middle of rebuilding his computer at the time and the surge that resulted from the strike killed off that tower. He bought a new tower and that still seemed to have problems. After ringing our telco , our ISP etc the problem seemed to be the modem and the ADSL filter, we replaced the modem and tonight will replace the filter. Fingers and eyes crossed! You know all those emails that promise you seven years of bad luck if you delete them? I think I have deleted one too many!
     
    Ray has some more problems, the incontinence has moved from once every few days to twice a day. We blamed the new medication, Ebixa (Namenda) at first but the problem went away for a few days and then came back with a vengeance so I am doubtful of what is causing it. I know he is feeling miserable because of it and I am sick of cleaning him up and giving him extra showers. I know the change of seasons doesn't help as we are alternately having warm and humid days and cold and wet days so it is no wonder the older members of the population who inhabit the circles in which Ray moves, are coming down with all sorts of minor diseases. I have that "let's wrap him in cotton wool" feeling coming on again.
     
    Ray did go to Camp Breakaway but had a morning when everything went wrong, including a bout of incontinence before he was able to get out of bed. I had a phone call about that today as a "report" was put in on his problems. He will be able to go back there in the future but with a "one on two" minder to make sure he is safe. I knew this was going to happen but it is sad when someone has "special requirements" marked on their file. As stroke survivors know, once you are labelled you are treated differently.
     
    I took advantage of my three days. I used one to do some extra chores at home and used one to go out to lunch with a friend. After lunch we went to the movies to see "Quantum of Solace". It was not really my kind of movie but it certainly was a distraction from the every day. James Bond, whichever actor is curently playing him, lives a life that is nothing like mine. And that is good. The dangers of my job are domestic, the dangers of his international. Both of us struggle to do our best.
     
    We had the delight of our grandkids on Friday. Alex and Oliver caused the usual chaos. Those two little boys have so much energy. This Granma is racing to keep up with them. I managed to get Tori to stay overnight and we had a busy Saturday of doing the stuff she can only do without her brothers around. This included colouring in, building a block tower, jumping on the trampoline for ten minutes of uninterrupted bouncing etc. In the afternoon we took her to an outside mall where there is a water feature and she was able to paddle for a while. I forgot to put sunscreen on her and she got a bit pink on the shoulders but she loved the afternoon out. Ray managed to forgo his afternoon nap and came with us so it was a good time for all of us. We had a walk around the inlet and it was so peaceful. When school holidays come that will all change so it is nice to go now before the influx of tourists hit our lovely area.
     
    I've had a couple of sad phone calls lately about old friends with health breakdowns. I don't know why but it always seems to come just before Christmas, doesn't it? And I want my Christmas this year to be bright and cheerful and one to remember. I know we will only have lunch here with our local family and then probably Ray and I will be alone for the rest of the day but it can still be a light-hearted, happy time. We usually get some phone calls from friends and ring a few ourselves so there is that tenuous contact across the miles. I guess Christmas is built up to be such a "family occassion" that the reality can be somewhat of a let-down. Only a month till Christmas Day and so much to do. I'm sure it will be a joy to shop for gifts...well hopefully.
     
    So it is back to normal for a couple of weeks, then Ray has a short time in respite ( yes, it finally got worked out so he can get the room he always has) and then the run up to Christmas. I wonder sometimes where the time goes..... it's a sign of age I suppose. I am still so missing you all in chat. Hopefuly next week all my computer woes will be behind me....
  9. swilkinson

    Thursday 13th

    By swilkinson,

    Today has been a day of frustration. I feel as if I am walking in glue and not getting very far. I know we all have days like this but why is it happening to ME!!!!
     
    Ray's new medication is giving him diarrhoea. He is supposed to settle down "soon" so the pharmacist told me. It is an "initial reaction". It is also a nuisance as I did laundry every day this week! Luckily the weather is warmer now and it has been fine with a nice afternoon breeze to waft through the clothes. I bring the sheets in ready to go straight back on the bed. So to Ruth and all those caregivers I have given advice to on such issues I finally understand, truly I do!
     
    My respite provider rang me yesterday afternoon while I was gardening. By the time I rang her back she had left the office. Another woman rang me today to say my respite care in December which is only a week starting 8th December has been cancelled! WHAT? HOW COME? WHO IS DOING THIS TO ME? ETC. I finished up in a flood of tears imagining Ray still having the present difficulties and me coping without respite till heaven only knows when. I care for Ray the best I can and will do so as long as I can but honestly I need my little breaks so PLEASE....
     
    Ray's care provider rang me to say she can't provide the two hours extra care for Ray tomorrow so I would just get an extra hour. I have a lot of business to take care of as well as the visit to Mum so I was hoping for five hours off and now I just have four. I guess I will do most of what I need to do. It is the shortness of available time that leads to me rushing decisions and making the wrong ones. And that, as most caregivers will tell you, is what leads to frustration. A caregiver never gets all the time he/she needs to do all the chores that need doing. It is a never-ending story and another reason for a caregiver finally putting his/her loved one into full time care.
     
    I have been leaving messages about Camp Breakaway as Ray was supposed to be there Tuesday to Friday next week. The Camp he and I went to was for Carers, this is his usual Frail Aged Camp where he will see a lot of the people he usually goes with. His booking had not been confirmed. And again I missed a call and found a message saying he is not booked in! OH DEAR! more floods of tears. Luckily at that point the person I had contacted first rang back to say she had passed the message on to another worker and Ray WILL be included in the Camp so someone will come out to do the paperwork on Monday...PHEW!!
     
    The respite care provider just rang back to say she is working on moving someone else who is having respite to another room so Ray CAN have his week. But that is just maybe until it is confirmed. Another cliff-hanger! No wonder my fingers are sore from hanging onto this cliff. I just hope there is a safety net down below in case I fall! I certainly feel like letting it all go right now. I doubt all these agency workers know what havoc they cause in our land-locked lives.
     
    I try not to be a "fair weather caregiver" as I've known some people who are. They are happy looking after whoever is the recipient of their care until the first hurdle comes into view and then it is all too much for them and they collapse and someone else has to take over. I try to battle on and fight through whatever is bugging me right now. Mostly I do okay and within a few days life goes back to normal again. But some issues like the incontinence keeps re-appearing to make my life miserable. I say I choose to stay and look after Ray as I wake up each morning. I'll try to go on making that same choice day after day. I was never raised to be a quitter.
     
    So maybe a cup of coffee, a chat with a friend on the phone for half an hour or maybe an hour reading a book will help my day to come right again. I will worry about tomorrow tomorrow Today I will just trust that life will come out with the good days outnumbering the bad days and I will be able, with some help, to cope with whatever lies ahead.
  10. swilkinson
    What a pleasure it was to have guests from Oklahoma City. Trev and I picked up Babs and Eddie on Friday around noon from the Visitors Centre in the heart of Sydney. She and I recognised each other immediately and Eddie stood by with a real grin on his face as we hugged each other enthusiastically on the pavement. We had a drive around some of the shoreline trying to get glimpses of the Harbour as we went. Trev got pulled over by a policeman ( long story) so he is not happy about that but it happens to us all in a strange place where the traffic directions etc are not always clear.
     
    I won't go into a minute-by-minute description of what happened for the 24 hours or so they were here but if I say we did a lot of talking, you will all relate to that I am sure. And Eddie, at first shy with this family of strange Aussies, soon found he and Trevor had a lot in common and talked and talked and talked and talked....
     
    On Friday when we got home we had afternoon tea ( yes, Babs drinks tea!) and then Ray took a nap and Babs, Eddie and I jumped into my car and did some local touring. They dipped their feet into the Pacific Ocean a few miles from here at Toowoon Bay, one of my favorite local beaches. It was a treat but the water temperature is still too cold for swimming as yet so we only went into the water up to our knees. Well Babs got wetter than the rest of us...lol.
     
    We drove around the suburbs and beaches helping them get an idea of what our area is like. I always want to show our visitors as much of the local scenery as I can, it is so pretty around here. Babs was wanting to know: "What bird is that? What is that tree? Do you know the name of that flower?" etc I know she was just enjoying so much being here. We've been talking on chat here for two years so she knows a lot about where we live etc but it was good for her to see us "in the flesh" and for her and I to be able to talk for a while. I wish it had been three or four days instead of just the one as I so enjoyed the visit.
     
    In the meantime Trev had a barbecue for our evening meal well on the way when we got home and there were lamb chops and steaks and sausages and kangaroo steaks ( you have to try the local delicacy) and salads and side dishes. I did manage to burn the apple pie for dessert as I was talking and talking and talking and talking...
     
    On Saturday we went to a local shopping centre (mall) for Babs to go online send a message home with her arrival date etc. We had three computers between us and none of them working. Mine broke down last Tuesday so apologies once more for those who came to chat and found me missing AGAIN! I am working on a friend's computer as I send this so once more do not know if I will be back in chat on Tuesday night. My repaired computer broke down again and not a thing we did to it would let me back in. OH SO FRUSTRATING!
     
    Babs and Eddie returned to Sydney by train, I would have loved to go back with them but I didn't have a minder for Ray. That is just another hard thing about being a caregiver I guess, the limited time you are able to spend with your friends. They fly back to the States on Monday afternoon. I hope they enjoyed their cruise from New Zealand, their stay in Sydney and the 24 hours they spent with us.
     
    So, all of my friends here on Strokenet, start saving, there is a bed waiting here at Sue and Ray's place. We will throw a kangaroo steak on the barbecue, plump up the pillows on your bed to make you comfy and welcome you with open arms.
  11. swilkinson
    Hi there my friends, I've misssed you all. Ray and Trev and I have been to Queensland as planned. It was not too bad, a few awkward moments, because of Ray's dementia, because of my focus on Ray, because of the generation gap and different expectations, but on the whole not too bad. It all went pretty smoothly with Trev and I sharing the driving.
     
    Although we went to two motels we had been to before the accommodation was NOT disabled friendly and that made it very awkward. But we managed. It was good tonight to shower Ray in his own special shower room and be able to shower him properly. It certainly makes you count your blessings when you have been "making do". Travel is fine but coming home tonight was good too.
     
    BABSZ from Strokenet and her husband are on a cruise of New Zealand and three ports in Australia so we are due to meet on Friday when the ship docks in Sydney! She has sent me regular updates of what she and Eddie have been up to and seems to be having a great time. She and Eddie are walking a mile a day around the ship every morning. How is that for energetic! I am sure I will have some pics to post of us together so do stand by for that.
     
    The trip to Queensland was for us to catch up with Ray's brother and his wife and to visit with some old friends which we did. Both of the men have had surgery for cancer and both thankfully are doing very well, much better than expected so it was reassuring to see both of them "in the pink" of good health. I guess I am a good long distance worrier. I like my brother-in-law Les who is the opposite of Ray, noisy where Ray is quiet, cheeky where Ray is courteous etc. The time we spent with him was great, all the old stories trotted out and some teasing. Ray can't remember a lot of the stories now but seemed to enjoy the visit.
     
    The weather was brilliant while we were away, the days not too hot. After spending two days visiting I took Ray to one of our favourite spots, Bribie Island. Bribie is a long sand island attached to the mainland by a long causeway. I guess it has grown from once being just a sand dune in the middle of a large bay. It was first settled in the 1880's and is now partly covered by tourist resorts but still has a lot of open space up one end including lovely walks along the Pumistone Passage, the waterway between it and the mainland. As we arrived at lunchtime we enjoyed "fish and chips" sitting at a table near the water and watching yachts and small boats with fishermen and the antics of seagulls etc. A few hours sitting by the water is a real restorative for me.
     
    On the way home, yesterday we visited some old friends from our Karuah days who now live on the north coast and today, our son-in-laws mother. I knew she would be having a sad time as next Wednesday is the first anniversary of her husband's death and she is of course still mourning him. It is so hard fter 50 plus years of married life to lose a much loved partner. I guess there is no "timeline" for recovery. She was very pleased to see us.
     
    Trev said he enjoyed the trip, he had thought of it as taking his Dad to see his brother, maybe for the last time as Ray does not travel so well now. I don't know if this will be the last time but know that travelling with a person who has stroke deficits plus confusion caused by the dementia is hard. Ray was brilliant in the mornings, not too bad of an afternoon but obviously more tired than at home where he can have a three hour nap. And by night-time he was really struggling. He didn't really want to go out to eat or battle with a shower in a bathroom not set up properly and had some problems with simple things like light switches and arranging bedclothes.
     
    I really missed my kitchen! It is wonderful how quickly I can do tasks like making up Ray's thickened fluids at home and found in a motel or someone else's house that the job takes twice as long. And living out of a suitcase is harder too as those elusive socks and hankies and underwear that fits always seems to hide in the dark corners eh? I did manage some laundry while we were away so that made the fact that Ray and I shared a suitcase manageable. I will still have a pile of dirty clothes to attack tomorrow so I am praying for a sunny day with a light wind so I can sun-dry.
     
    Now to do a bit of a spring clean before Babs comes. I am really looking forward to that. Babs and Eddie and Sue and Ray, think of the chatting! How good is that?
  12. swilkinson
    Just got back from Camp Breakaway and I must say it was duller than usual. I guess the rain and gale force winds had a lot to do with that. All the walks and outdoor games and a picnic on the lawns planned for yesterday had to be abandoned. And would you believe that today the sun was shining, the sky was blue and we all headed for home.
     
    The dementia camp is not as jolly as the usual Frail Aged Camps as the "clients" are less able to participate. So we had quiet days and just the entertainers at night. I enjoyed it all, I managed to catch a couple of naps and that is always good. Ray as usual was the pampered pet and blossomed under the tender loving care of the volunteer carers. He was frequently clutched to the chest of some large lady to show she appreciated him. At my age the jealousy factor has gone but to him it is an added bonus, we don't have a lot of people in our lives that "love" us now.
     
    On Wednesday, despite the damp conditions some kids set fire to a builders rubbish pile almost opposite the camp and the nearby pre-school children and staff got evacuuated to the hall. That caused a lot of fun as the littlies milled around the old folk and four small tots arrived in a cot on wheels. We had had the older kids entertain us that morning with a couple of little songs they were learning and they were not at all shy around the camp guests so it was a nice diversion for us all. The flames from the burning packing materials in the dumpster sent clouds of horrible black smoke into the damp grey sky but it was much more frightening in appearance than in actuality.
     
    Today is Friday and the Community transport bus has just picked up Ray to go to Scallywags, I'll go to visit Mum when I had finished this and then do a small shopping session. I don't need much as we are leaving for Queensland on Sunday. I am looking forward to the trip as the countryside should be very green after all the rain we have had. You know when the sky is blue and the birds are nesting the rest of us feel pretty good too. Ah! Spring!, the bird is on the wing! (I forget who wrote that, if I did I would acknowledge it..lol.) The change in scenery as well as the break from home will do us all good.
     
    The caregivers at the camp had some lectures during the week. It was actually a Carers Camp, partly funded by the government for Carers Week. I didn't learn a lot from the talks, I think we learned more from the interaction with the other carers. Like stroke dementia affects each individual in a slightly different way so although we could see the deficits how to deal with each individual's progress into the illness is not clear cut. I think it is harder for the male carers than the female ones. One older man said to me in tears: "She is supposed to be the one who looks after me." I guess that would be seen to be the normal way of things to him.
     
    Support is so necessary to go on with the caring role. I am so grateful for what I have. Sure people let you down and some who "should" come to our aid don't, but that is beside the point for me. I access what care I can, I'm grateful for what I receive, I go on striving to give Ray the best care possible. That is what it is all about for me at this stage, nine years down the track from his major strokes. I still felt sorry for those couples who, it was evident, are still wishing for a miracle, or that they would wake up one morning and find it was just a horrible dream.
     
    We can all say: "There, but for the grace of God, go I."
  13. swilkinson

    perseverance wins

    By swilkinson,

    Well, what a huge task that was. It seems as if last week I made plans for every day but all aspects changed as I went along. But looking back it was all for the good. It just proves that in the end it is perseverance that wins.
     
    I had such trouble with my old computer when the chat rooms changed. It coped all right with the old chat but the new chat was way beyond it's league! I could get into chat at first but the screen kept freezing and I would be five sentences behind everyone else. It was like trying to hold a conversation in Echo Valley! Then I couldn't get in at all. No way known would my stubborn old computer enter that room. So I wasn't able to do last Tuesday's chat at all.
     
    After I had so much trouble with my old computer finally my son rebuilt the "newer" one. Now for those of you who just type words in and there you are it is a lot of trouble to update any old computer. So Trev tried that on Thursday and Friday nights. But whatever he did the computer resisted all attempts to be updated. Reminds me of some good folk when the word "change" is mentioned. Stick their feet into the ground like a donkey and refuse to budge.
     
    Saturday we were all busy so on Sunday after church we started trying all over again. Trev went back to the old computers we keep as spare parts and now one of the frames did look promising so he updated it with Windows XP and all should be well. Nope, nothing as easy as that. The chat rooms still would not load. So we did some more updating. I think it could have been that Java was just installing the standard platform and not the updated verison.
     
    In the meantime we had visitors my sister and her husband came for afternoon tea. She is always with the best of intentions trying to improve my life! Well meaning people...sigh. Anyway she had seen a refridgerator at a garage sale she thought she would "buy" for me. So off she went, hubby in tow and rang to say she had paid for it and could my sons pick it up from four suburbs away? Our older son was here fiddling with my computer so we arranged for him to meet our other son who was at the movies and they brought it home. So instead of the other things we had planned there we were unpacking the old refridgerator and changing over to the newer one . Good thing to do, bad timing though.
     
    So on with the updates until at 2am I finally reloaded the Java for the third or fourth time and YEAH! Up came chat just like it should. I don't have the MP3 player but I do have chat. So when I get back from this next couple of weeks away I will be back in chat again! Hurray! I also got to chat to Ann Rogers on Instant Messenger. I hope you are all taking advantage of that and making new friends outside of the scheduled chat times.
     
    I am glad I can talk to people here anytime. I have made some good buddies here at Strokenet, and chat has been a part of that particularly in my lonely early days in 2005/2006 when I really needed that support to get me through the changes in our lives here. I read the newbies posts now and hear that echo of my own early posts - that lost and alone "no-one understands" feeling that suddenly seperates us from everyone else in our circle whose husband has NOT had a stroke. You know what I mean.
     
    I am not exactly expecting to chat soon as I will not be in chat for the next couple of weeks. But I will anticipate getting my chat "fix" soon. I will be back to hosting my chat (and maybe "dropping by" in other chats as well) from early November and hopefully for a while to come.
     
    So how many people does it take to update a computer? In our case two sons and an old lady who NEVER GIVES UP!
  14. swilkinson

    off chat for a while

    By swilkinson,

    Sorry folks but my old computer doesn't like the new chat set up and won't let me in. So for now someone else will do it for me. I will be updating my computer though when I get back from my two little breaks so I will be back hosting again. I will miss chat as it has been a big part of my day.
     
    Next week we are going to Camp Breakaway, it is only a short break, Tuesday lunchtime till Friday morning, but for me it is other people to talk to, others preparing meals and Ray still gets showered etc so virtually nothing for me to do. I find it is a pleasant break for me. He will go alone to the next session in November to give me a break at home. I'll need that as a run-up to Christmas, maybe get some shopping done and have that hair cut etc.
     
    It is a dilemma in a way how to make the best of your life with a long term invalid. It is not the same as living with a person who more or less recovers fully after a trauma. I struggle to answer the question: What is the best choice to give the caregiver a break? Is it respite, other forms of care, family support? I think it is whatever helps to keep the cared for person in their own home. And ultimately, for the majority of us we know that in the end we will have to put our loved one into full time care and then we will be struggling with the guilt that arises from that.
     
    The week after next we are going to Queensland for a week, to see Ray's brother who has lung cancer and his wife and to catch up with our other old friends who have been through a lot lately. Eric who worked with Ray many years ago has had major surgery for bladder cancer and frankly I think doesn't have a long life ahead of him now. We do speak to both couples by phone most weeks but there is so much more support in sitting in someone's house, drinking coffee and chatting. It is only human to want that full on companionship that only being present brings. I know that from having my daughter and her family so far away. It is lovely when she phones and I speak to the grandkids etc but it is no substitute for seeing them face-to-face.
     
    Ray and I just went to a birthday lunch for my friend down the road. She has no children but lots of nieces and they are a happy, noisy mob and all very supportive. I think she enjoys being with them all so much. It was really nice that we were invited to join in this time. I think they suspect that this is her last "good year" so were all making a special effort. As I said in a previous blog I went to the same school for a year as some of the nieces so we all did the "long time no see" conversation and they passed around photos of the latest grandchildren. It was a very pleasant way to spend an afternoon.
     
    I've been a bit down lately, not depressed so much as a little worried about the future past the end of the summer. Ray is not getting any more mobile. I have noticed he has more trouble getting up out of a chair and he sits a lot more inside now and does a fair amount of gazing into space. I wonder if the dementia meds are starting to lose their potency after him being on them a couple of years. The neurologist said that that might happen. I know I have to remind him of a lot of extra things now like taking his lunchtime meds. That was automatic before his hospitalisation, now left to himself he forgets to take them.
     
    There are good things happening though. Spring is definitely here now. The birds are so busy flying around and pairing off that they ignore humans and seem set to knock you down as they fly past. We have a lot of trees in the back yards on our corner of the street so we are in their path as they fly from one tree to another. There is not a lot of flower in the garden, I didn't plant any annuals but I have tidied the garden beds up a bit and they look good with green foliage and the occassional flower. Gardening always makes me feel so much better so I have been outside quite a bit lately trying to shake myself out of the post winter blues.
     
    I will miss you while I am away on my two mini vacations but will have access to the computer until next Monday and then for the weekend in between and if there is time I will update you on what is happening in our little corner of the world.
  15. swilkinson

    kicking bees

    By swilkinson,

    When the shower nurse comes to shower Ray on Thursdays and put him through his exercises I go down to visit my friend who is having chemo for her cancer and we have a cup of coffee together. She only lives just down the street so I can walk there in five minutes. We laugh and joke, share family stories ( I knew her sisters and some of her nieces I went to school with) and so it is a very pleasant hour. Despite a fairly grim prognosis she is just taking each day as it comes and trying to live a "normal" life. I really admire her for the matter-of-fact way she is handling the chemo. She says things like: "I only have two bad days so that means I have five good days every week." Boy, I wish I could bottle that attitude and sell it!
     
    We were discussing this morning how our neighbourhood has changed. We have both lived here on and off for forty years so we have seen a lot of changes. I was complaining about the number of people who let the verge between their house yard and the road fill up with clover. Today with spring well under way I was walking along and kicking bees out of the way as they collected the honey from the flowering clover. In my youth the man-of-the-house would have had that all mown and tidy and no clover allowed in the lawn, just green, smooth, well looked after grass.
     
    There was pride in how you maintained the house and its surrounds back then. We didn't have much money and our furniture and our clothes were often hand-me-downs but we kept ourselves and our surroundings dusted and polished and we were "respectable". My Dad only had a low paid job for most of my pre-teen years and they had a mortgage to pay off but we never went without. There was always what Mum called "good, wholesome food" for us to eat. So if the neighbour grew turnips and we grew beans we swapped and so the casseroles had very little meat in them but a whole lot of turnips and carrots and onions and we were hungry enough to eat it all up.
     
    Now Ray and I are on a restricted income it doesn't seem so hard. We are pretty economical to run! We eat simple food, I keep clothes laundered and dry them in the sun, we don't go far from home usually so we can live with the high cost of petrol (gas). We even manage to save up and go on the occassonal night-out with the family and maintain our fees in the Lions Club though I wonder why it costs so much to do acts of charity sometimes. I know a lot of people on pensions do struggle so I guess, for both of us, our frugal upbringing is now paying dividends. Unlike today's generations we were not brought up in an "I gotta have it NOW!" world.
     
    Ray and I are managing with his new restrictions. I make him "shakes", thickened milk drinks that he seems to like. A friend asked him if he missed his "cup of tea" and he said not really. I am lucky he is so easy in what he eats and drinks, well mostly anyway. The overall cost of running a household with an invalid is higher, in extras like padded undergarments, extra laundering, food thickener, extra milk, more tender therefore more expensive cuts of meat etc. We have a co-pay for medicines and a "contribution" for our in-home care and a "fee" for Daycare so that is extra. But we can no longer live an extravagant lifestyle so I guess that is a saving eh? Trip to Paris? Sorry! Lunch at the best hotels? Probably not.
     
    And I am fortunate that Trev, like us, is a bargain hunter so if he sees a sign for cheap vegetables by the side of the road near a farm gate in he goes and comes home in triumph with his purchase. Trays of three dozen eggs from the Egg Shed cost the same as two dozen from the supermarket and are very fresh, well a day old compared with six to eight weeks old. So eggs boiled, scrambled and used in fried rice and pancakes etc are good food for a "change". And I grow some herbs and change the flavours of sauces and make savoury dishes that way. Trev is also excellent at BBQ's so that fills our summer with special dinners as well.
     
    I love to bargain hunt in the shops too so "never" buy today what might be on special next week. And we have a large chest freezer we have had for twenty years or more that I fill with my cooked and frozen bargains so a cheap price for ground meat can be translated into saving for weeks to come. We come from the generation that learned to save and we do live cheaper than a lot of people can who never learned to make a dollar stretch. I hope my Scottish ancestors appreciate the "canny" shopper I have become...lol.
     
    So back to where I started. I miss having a husband who would sit on the front grass and dig up all the clover and broad leafed weed so our lawn was a picture of neatness in the summer. Now with just me to do the work it is never as pristine as it used to be. At my age I have learned to accept that there are things I cannot manage to do now. And that means sometimes lowering what I think of as my "standards". And that is not always easy.
     
     
  16. swilkinson

    an early change

    By swilkinson,

    If I'm not in chat at the right time this week blame the powers that be here in Australia for deciding we'd change to Daylight saving the first weekend instead of the last weekend in October. Don't ask me why. It seems we have too many changes on a whim and without a good reason these days. I didn't even realise we were changing the clocks until I was watching the late news last night. As that finished at 11.30pm it meant it was already after mid-night when I changed the time on the clocks etc. I know exactly where I lost that hour. Grrr!
     
    Of course if I have an "extra" hour in the day I should be able to catch up with some of those fiddly jobs I have been putting on hold for a while. You know that endless list of mine which contains items like "put up three pairs of summer trousers for Ray by three inches." Ray is shorter than he used to be and trouser sizes haven't changed so now I have to put them up. It is not one of my preferred jobs. One pair is from last Christmas, two from his birthday so I better fix them now so he looks smart for our summer outings.
     
    Another change happens this week. After eight years of going to Daycare on Mondays Ray is now to go on Tuesdays. It is to do with transport as on Mondays now they use a 25 seater bus instead of the old 14 seater and due to the extra length it won't come up our driveway. So if he goes on Tuesdays instead he can be picked up as he was before. It is a nuisance but I think it is too dangerous for him to sit kerbside and wait for the bus so it is better if I can just escort him down from the verandah when the bus comes. I can see this as a distinct advantage, particularly if we have a rainy summer.
     
    The disadvantage is that he loses the friendly faces from the Monday group including one of the men from our church who is a Monday volunteer. And then he joins up with another group of strangers. I am not sure he is going to be able to intergrate given his dementia and all so have asked the supervisor to keep an eye on him for the first few weeks so if he gets agitated etc she notices and lets me know. Of course he might settle in without a murmur. I sure hope so.
     
    The change also affects me as Tuesday is craft group and I pick up two ladies at 1pm so instead of visiting Mum, doing some shopping etc and getting home at 2pm I will have to be back by 1pm. The Daycare supervisor has agreed for the bus driver to drop Ray at the church ( only a short distance from where their hall is) and he will still have afternoon tea with the craft ladies and come back home with me. And we will need to wait and see what we will do with our "spare" Monday now. For this week it is Labor Day so we wouldn't do anything anyway.
     
    We had some rain overnight so I have been happily puddling in my pot plants, pulling out weeds etc. I love gardening, it gets me out in the open air, gives me exercise and in some cases gives me flowers to give away or put in a vase and herbs to go into my cooking. I would love to have a big vegetable garden but know I just don't have enough time or energy for that. I love going to look at other people's gardens too, the beauty and the variety of plants always makes me want to change a few things in my own garden. But without the use of water for the garden ( we are still on restrictions here) there is not much point in putting in more than I can hand-water.
     
    The Friday minder this week looked after Ray for five hours. This is because Scallywags has changed to fortnightly instead of weekly. I did my usual Friday stuff and squeaked home with four minutes to spare. Mum was still in bed while I arrived at her hostel, I waited twenty minutes before she appeared dressed and showered so most of the visit consisted of me watching her eat breakfast. The nurse told me that Mum's eyesight problems are due to cataracts not macular degeneration as they had thought. But she doubted that Mum with all her problems is a candidate for an operation. She went into a lot of detail for me and I see her point; aged 90, severe dementia, other problems associated with anesthetics etc. I would like Mum to have the operation, to see clearly again, but can see the downside of added confusion etc for her.
     
    I also disussed it with the mentor of the dementia support group. He pointed out to me that Mum might get "frightened" by all the strange people at her Lodge if she could suddenly see them. It would be like seeing them for the first time as her eyesight has been deteriorating for some time now. I hadn't thought of that, just the pain she would have to go through, not the consequences of the operation itself. I'll go on thinking about it and get a few more opinons. I would love her to see clearly again, sight is such a gift.
     
    And so we go on, coping with changes to the best of our ability as they come along. But sometimes I just long for peace and quiet and a world in which nothing much changes. I guess in a way that is another form of denial eh?
  17. swilkinson
    We just had our northern kids and grandkids here for four days. All last week I did extra jobs to make sure the house and yard looked as good as I could make it look. It was a HUGE effort. I was pretty tired by the time they came here but Oh so glad to see them. I do miss them all so much and although we see each other at least twice a year it is not the same as when they lived two suburbs away.
     
    My daughter and son-in-law have a big job running a Salvation Army Corps in a large Queensland town/city with all its problems. Like most "churches" they have a few committed older folk and a bigger contingent of younger folk who have not yet got to the stage of really committing themselves to sacrifice some of their precious "family time" for the good of their local community. This mix means that although there appears to be plenty of people to do all the work required in a church that is both spiritual and practical it is in fact often left to the "oldies" and the officers to do most of the hands-on-work the public expects from the Salvos. And believe me in our changing social times there is far too much need for the churches to cope with.
     
    Shirley and family had come down the coast with a camping trailer using camp grounds that were animal friendly as they also had their cat and dog with them. They had taken four nights on the 1700 miles from Cairns. They picked up the other mum-in-law and went down near the Snowy Mountains for a week then dropped her back in Sydney and came up here. It was lovely to have them with us. We had nice weather so enjoyed a family bbq, a day at the beach, a shopping day and a night out. The days just flew by as they always do when you are with people you love for such a short time.
     
    I must admit that it was an effort to keep up appearances. I had a couple of incidents with Ray when it was a scramble to clean him up before everyone else got up in the morning. I did up his meds in our bedroom, set up all his clothes, helped him dress etc so we could go out to the living area with bright, happy faces. I think I could only keep up that effort for a short time before the cracks began to show. Ray was very good, only had a few moments when he said something silly and I could count the seconds before someone said: "Right..." and changed the subject. No nastiness or "arguments" from him thank goodness. I do want time with our family to be good times and for them to have happy memories of both of us together.
     
    Which brings me to the question: "how do others see us?". I know our son Trev who lives here with us, sees the bad times as well as the good and probably has a clearer idea of how Ray's condition has altered and with it my ability to cope with it than the other two do. He sees me down on my knees cleaning up the mess, exhausted late at night after some of our bad days, desperately trying to keep it all together. He says that he tried to tell his sister about it but she said her Dad looked okay and she was sure I was coping okay. I am sure that IS how it looked too as we were endeavouring to make life look "normal". So should we let our families see life in the raw or should we protect that family image?
     
    I am coping better with the thickened liquids now and have a range of containers I use to take drinks for him with me when we are going out. I didn't take anything with us on the night out as I was too flustered getting Ray and me showered, changed into clean clothes and ready to go out. But I made him a "drink" of vanilla dessert sauce and orange juice which whipped together seemed like the right consistency. It was probably WAY too high in calories and upped his sugar level but sometimes you have to improvise and compromise at the same time. And necessity is still the mother of invention.
     
    Today I have been trying to get some shopping done and pay some overdue bills. I let things slide a bit while I concentrated on the house cleaning and the refurbishing of the wardrobe. There are only so many "spare" hours in the day and I was filling them pretty full. So at last I have the bills off my conscience again. And the fridge and freezer have some newer occupants. Anyone else find that when the medical problems crop up they take so much out of your day? And that other things like shopping for groceries seem less important and so don't get done? I guess the garden needs some attention too so I'll spend some time on that tomorrow if the weather keeps fine.
     
    I am hoping to get a few days to catch up with letter writing etc, I seem to get way behind in that. And I'd like to have time for reading in the sun before the heat of summer comes, and sorting out my wardrobe as some of last summer's clothes definitely won't do this summer ...and...and...and..lol you see why I keep a list handy eh?
  18. swilkinson
    I am not the only one here who has trouble accepting changes, Ray with his dementia is not able to change his thinking and so we had a chain of events happen today that was to do with that.
     
    As you know I had a new built-in closet ordered and it was mostly built by the time Ray got back home after three weeks in hospital. He doesn't process much information now (dementia) and so I have made a point of taking him through where all his clothes are now etc. So it surprised me that the carer had to call out to me on Thursday when I was chatting to Babsz. "Where are your drawers?" this was a giggle inducing question as when I was young we still called panties "drawers", and I was sure our very proper carer was not referring to my underwear! But instead he was looking for some clean ones for Ray. Ray had told him: "they are in my drawers" which was true right up to two weeks ago. So I slipped into the bedroom and showed Jeff where to find everything.
     
    Act 2: Today we had a carer who has been here on and off since about June. She is a no-nonsense person who doesn't particularly listen to the primary caregiver/wife/partner etc. I wanted her to be familiar with where Ray's clothes are now but she wouldn't look at the wardrobe saying: "I can't, I am not allowed to get clothes out for him. It is against the law!" This was a bit of a problem as I could see Ray pouring his morning drink down his shirt ( he did on Wednesday) and her refusing to change him. So I went off to see Mum, go shopping etc somewhat reluctantly.
     
    My second stop, after seeing Mum and walking round and round the corridors of the Dementia Lodge with her, was the dementia support group I go to. I am so grateful for them, they are very supportive, the lectures we get are very informative and quite a few of our questions are given sensible, doable answers. This has saved my sanity in a lot of cases as our mentor explains to us that we have to change as our survivor with dementia cannot change now. Sad but true is seems.
     
    Anyway I asked why the carer cannot look in the wardrobe for fresh clothes for Ray ( well Jeff does) and he explained it was a legal no-no when they are caring for a dementia patient as the recipient of their care may have paranoia and accuse them of stealing etc. He said while that is true common sense has to have the say and of course they need to know where clothes etc are and use them if the situation arises. This means me giving the carer permission to go to Ray's part of the closet, get out the clothes he needs and shutting the doors etc. Well, thank goodness for common sense.
     
    So I went off shopping and on my return rang the service provider and ran it past her. She was hard to convince at first but rang the carer, spoke to a couple of other people ( apparently) and rang me back to say I was right, the longer respite required that the carer "may" have to find clothing and put it on the client. Yes, a common sense approach to life, an assessment of the risk, a plan for the future. Yeeeeaaah!
     
    Every time a caregiver decides to do something he or she has to assess the risks. There are dangers in everything we (Ray and I ) do. He has so many issues now including the added risk of choking if he is given unsuitable foods or unthickened fluids. I tried him on a milkshake today thinking that that was slightly thickened and would be okay but he had a coughing fit while drinking that so it was thickened fluids for the rest of the day. So the risk assessment is serious for a lot of what we do.
     
    There is a risk of falling as well as choking. Which is why I now have to take him down the driveway in the wheelchair or by backing him down in the car as since the three weeks "bed rest" in hospital he is less agile and more prone to falls. So as in order for him to go to Daycare I have to load him onto the bus from the kerbside (long story). So now instead of him sitting on the verandah and waiting till they pull into the driveway, I now have to have him ready and waiting at the kerbside. @#*&%###! More work for the caregiver.
     
    I have to keep in mind that I can change but Ray can't. However annoying I find his behaviour and some of it is, he cannot change it at will. I just have to learn to live with it or find a way to circumvent it. None of this is easy. I am as human as anyone here and of course I want him to change back into a reasoning and reasonable human being. But dementia has the last word here and that is not going to happen. He will do whatever his altered perception tells him to do. He is not beyond walking or talking but in a lot of ways now he is beyond reasoning his way through a situation. This often leaves him frustrated and confused. And me thinking of him as mean-spirited and lazy. Which of course is not the case. He has dementia. Full stop.
     
    If anyone here finds accepting changes easy, let me know your secret. I do the one-day-at-a-time thing, say the serenity prayer, try to go-with-the-flow. The problem is the flow is not necessarily going somehere I want to go!
     
     
     
     
  19. swilkinson

    keepa dancing Maria

    By swilkinson,

    I went to Wyong TAFE college to get my "Statement of Attendence" for the course I have just done on "Carer Connections". The staff were very pleased with us all as it was the first course and we were the guinea pigs. The information we have provided will be used to restructure the course and make it more focussed. It is nice to know we have made a valueable contribution to the training of future carers.
     
    While the teacher was giving her speech she referred to a popular television series of 20 years ago and a particular story. I think most of us remembered Paul Hogan before he became well known as "Crocodile Dundee". He was a stand-up comedian and had a program where he did character sketches. One character was a bumbling magician called Luigi. He had a beautiful ( she was a real knockout!) assistant called Maria. When his latest trick failed or his apparatus fell to bits, which it always did, Luigi would say:"keepa dancing Maria" and Maria would shimmy and shake to distract the audience. The teacher said it would be good to have a "Maria" to distract others so they didn't focus on the mistakes we as carers make.
     
    Just lately I have been subject once again to a lot of helpful advice. This comes down in a lot of cases to something like "put Ray into care or get more help looking after Ray and protect yourself". It is good, sensible advice and if I didn't love Ray and remember my appreciation of having had him as my husband for forty years I probably would consider taking it. But as it is I will try to get some more help with Ray, I will try to remember to look after myself, and I will continue to look after Ray for as long as I am able to do so.
     
    Ray went to Daycare, armed with the money he needs for the day, full of instructions from me on what to do and what not to do. Considering he has short term memory troubles and is not likely to remember what I say I don't know why I bother giving him instructions. But why break the habit of a lifetime...lol. New arrangements mean I now have to help load Ray onto the bus from the kerbside as they are no longer "allowed" to come into my driveway. Another silly rule, probably with some sort of safety idea behind it but none the less as a carer it makes life harder for me now. I also have to be at kerbside to help him out of the bus too. Today I parked the car on the road and drove him up the side of the house and walked him in the back door. That is the safest path and most direct route into the house for him.
     
    He enjoyed Daycare but came home very tired. I enjoyed my day as I was able to see Mum today after the presentations and fit in a bit of shopping. Mum sadly is badly bruised after yet another fall. At 90 she is having too many of them but short of tying her into a chair which she would hate there is no way of preventing her from the occassional fall. I have said I will take the responsibility for her falls ( I signed a waiver against suing them) and so it is a consult each time. But at least she is still able to go on living where she is and still has the freedom to walk the corridors etc. I grieve over her each time I leave her, it is so sad to see how she is now, old, bend and fragile so weakened by time and sickness. Nothing like she used to be.
     
    I have some more decisions to make. I need to contact my care provider and see if they are willing to fill in the gap by increasing the service hours when Scallywags goes back to being once a fortnight instead of once a week. I also know that all my services will cease in December and I need to book extra care now to be provided over that period and so avoid a period where I am more or less Ray's sole carer. It is okay to live day-by-day but you also have to plan wisely for the foreseeable future too.
     
    I enjoyed the weekend. It was busy unexpectedly as we did go to the church Spring Fair on Saturday morning and to the performance by the Sydney Welsh Choir in the afternoon. Both events were enjoyable in a different way. We also went to church on Sunday and had a friend visit Sunday afternoon. Ray knows now that it is okay to go to have his nap if a visitor is here as long as he says a few words to them first. Most people who visit do know the truth of what is happening to him and are quite willing to let him have his rest.
     
    This week is as busy as any of our weeks are and I will arrive at the weekend with only half the tasks I have set myself done.
     
    "Keepa dancing Maria."
  20. swilkinson

    a small triumph

    By swilkinson,

    Ray and I went on a bus trip today. I thought it would be okay as it was with the church oldies ( youngest my age, oldest 93) and only for five hours so I figured Ray could last that long. The day started badly with an "accident" but not a huge clean-up so I was still okay, Ray was okay, my temper was intact. Ray was "hurrying" as best he could as he knew we were going out for the day.
     
    I did prepare some thickened drink for Ray, enough for two drinks, found an old thermos flask, a tall cup with a sipper on it, a couple of straws and packed some extra clothes in a small bag in case of more "accidents". It was almost like those days when you packed the nappy bag for the kids but I kept reminding myself that this is just part of our "new normal" and not anything to get upset about.
     
    Our shower nurse today was a woman I call the "lovely one" as "lovely" is her favourite expression. She is a real gusher but so sincere that despite any heavy clouds hanging over you she still manages to brighten your day. I wish there were more people like her. So she shooed me off to do my walk and I came back feeling so much better. Amazing what a twenty minute walk in the sunshine will do.
     
    There was not much parking at church as there was a funeral on but we managed to get a spot, and yes, the driver was more than happy to take Ray's wheelchair and so a happy day ensued. We went to a little village that specialises in gift shops, you know the kind, one step up from junk but very bright and cheerful. Ray and I shared a table with another couple for lunch and everything was fine so that was another plus for the day. With a lot of shops only open Friday till Sunday until the next school holidays it was a little quiet but that was good for the oldies with not a lot of people around and the footpaths to ourselves.
     
    Ray was very tired when we got home and went straight to have his afternoon nap but I was so pleased he had coped with the day. It makes it easier to look ahead to summer with more hope. I have been so worried about his condition and how I would cope taking him out in public etc that I think I have been overly pessimistic. Well I hope that is the case. So maybe I can accept a few invitations and take it one step at a time, one event at a time and see how he copes with eating out etc. I'm so pleased today was a small triumph.
     
    Yesterday we had our emergency respite person to look after Ray while I went to the last class of my "Carer Connections" course. I had to do that as he cannot go back to Daycare until his "health issues" have been re-assesed! She was just there as a minder as so didn't shower him or give him exercises. She did seem to connect with him though and he was okay with her being there with him. I stopped on the way home and picked up a birthday cake and a few "extras" so Trev, Ray and I had a nice dinner and dessert after. Ray was pleased with the phone calls etc he got throughout the day ( eight friends and family members remembered his birthday) so it was a happy day for him. He also got some birthday cards in the mail today which put a smile on his face.
     
    It is hard as Ray's health deteriorates to see a good life ahead, but I am sure there are plenty of good times ahead of us. I keep telling myself I can only live one day at a time, not to anticipate problems, to enjoy the little things that amuse me, to find joy in a sunny day etc. Sometimes I can take that self-talk and it makes my day bright, but sometimes it just plain rings hollow in my ears. But it is all true. I have to live as happily as I can. It may not be happy ever after but it is happy for as long as it lasts.
     
    I know some people reading my blogs will think I am a bit of a "sad sack" or maybe frequently down or depressed but really it is not like that. We all only get the one life and we each do the best we can with it. I often wish there was a road map for stroke survivors and their caregivers so we could see what is ahed. But I suspect it is better that we just be content to live one day at a time.
  21. swilkinson

    things change...

    By swilkinson,

    I am not happy right now. Life has changed again and I am not coping with it. It is for all kinds of reasons. For example: Ray has always had "wife deafness" but now that seems to have really cut into our time. I say to Ray: "We need to go out so will you go to the toilet please." I then move off to do something else, come back, Ray is still in the chair. So I restate, he looks at me and looks back at his puzzle book. He has no understanding of the time factor or the need to make one move after another. So we are late for appointments again.
     
    Ray and I went off to church this morning and after the service we usually go across to the church hall for morning tea. This gives us a chance for little chats with other congregation members and I always enjoy it. This morning, halfway through the service I realised that we coudn't do it - Ray is on thickened fluids now. I know some of you are going to say, that's okay, just take some you prepared before with you, and maybe I will in the future. But for today I just put Ray into the car and came home. Some days I can cope, today wasn't one of them.
     
    We had our son, his wife and our three grandchildren here for dinner last night. It is Father's Day today and Ray's birthday tomorrow so they wanted to come for a visit and bring a small gift. I knew it was to be a short visit as Pam had to work last night. She only does three shifts a week but her hours are whatever no-one else wants to do. Halfway through dinner Ray started to choke. I managed to stop him before he was actually sick but I think that spoiled the meal for the rest of us. It is certainly unpleasant to watch. Now I know why some people fed their survivor or an elderly parent before the rest of the family eats, it is to avoid that "loss of appetite" that comes with watching someone else be sick.
     
    If this sounds like a vent, it is. I have gone back to the "why me, why him, it's not fair" stage for a while. I know it is not good to sit on the pity pot and I have to flush but I can honestly say that right now I am not coping real well with life. It is the new deficits, the hard work needed to maintain the same level of living and the thought that future social events etc are now probably in doubt. I would not write them off just yet but I suspect that going out to the Lions dinners, social events where there is eating and drinking involved etc is all going to be too hard to maintain for any length of time. And that fills me with sadness.
     
    Trev has taken on a few new tasks to help out but I can see that he is wanting to give up on his Dad. I guess nothing was more obvious than the fact that he didn't say: "Happy Father's Day." this morning. He went out after the others went home after dinner last night. He came home, went to bed late and was still not up when we went to church. That didn't happen in the past so I guess that is another sign that all is not well. It is harder for the adult children who live at home and witness the day-to-day struggles than for those who live at a distance. I know in his case he would rather it all went away... and I can echo that sentiment. But we all have to live with the reality of stroke survival and all the other illnesses etc that followed in Ray's case. I don't know what to advise him to do, I guess for his own mental health he may need to move out and move on now.
     
    I may not be on the computer for a few weeks. This one has some problems and has to be rebuilt and the other one I have is still waiting for my other son to install some programs. He keeps promising to get it done but doesn't get around to it. I don't know what to do about that either. After all he has family now and three little people plus a wife to please. Maybe I need to just go buy another computer or have it "fixed" by someone else. Of course Trev might get this one going within the week, or so he says.
     
    The good news is that after two days of very heavy rain the sun is out again. Makes it so much easier to get about. I have one last class and my "seven week" (four hours on Mondays) course is finished. I can't send Ray back to Daycare until he has been re-assessed but because I am doing something that is considered part of a "retraining program" I managed to get a six hour emergency aide for tomorrow. Thank goodness for Federal government programs aimed at getting caregivers back into the workplace (eventually).
     
    I think I might go out and sit in the sun. I could fill in an hour or two watching the weeds grow in my garden, right?
  22. swilkinson

    an answer of sorts

    By swilkinson,

    He's back home at last. Ray should have come home yesterday but there was a delay in processing some of the tests so he came home today instead. He is now asleep on our pull-out sofa bed. Allan is still working noisily in the bedroom on putting the shelves into the built in wardrobe so I thought the lounge bed was a better idea as it is quieter in there.
     
    I think just coming home in the car was excitement enough for Ray on his first day so I put in an apology for both of us for craft group this afternoon and our Lions Club dinner tonight. I think by the end of the week he might be feeling stronger but you all know what it is like to lay in a hospital bed for three weeks and do nothing much, it weakens you.
     
    We got an answer of a sort. The blood tests showed chronic anemia and a kind of kidney disease that is related to pernicious anemia. It has a long name and I guess when we go to the kidney specialist on 18th September he will go into what it is, how it is to be treated etc. Of course it is often associated with long-term diabetes, particularly type 1 (Ray has type 2) so I guess it was something they were looking for. It inhibits the production of red blood cells, leading to anemia. Don't know if there is any treatment or what it will be. That and the chest infection are now blamed for the falls, the weakness etc and not a TIA. Though the doctor does admit that TIAs can be associated with the condition. What a cheerful thought eh?
     
    I will plod on regardless. I got to see the social worker at last but she referred me back to my case worker, she said I needed a new assessment etc in the light of Ray's new condition. I guess I will put my name on the 14 week waiting list. She didn't have answers to any of my other questions either. I guess her chief function is nursing home placement for all the frail, aged people who come for minor surgery and as Ray has a wife/caregiver he is not her responsibility.
     
    I do feel a little let-down by the system. Ray has always had excellent care in our hospitals in the past and I guess you can put all of this indecision and less than perfect care down to the lack of staff due to the viruses hitting our population right now. There seems to be so many of them this end of winter. Mind you it is officially Spring as of yesterday. Spring!!! At last.
     
    We'll take it easy for the rest of the week, then I'll see if we can pull our life back together next week and get back to some kind of "normal". I think I need a lot of advice so will seek out some help from our stroke group etc and see if I can find out where this disease goes, what I need to look out for etc. There is always someone who has had experience in the area of kidney disease and knows what it leads to. Not that I really want to know, if you know what I mean. Sometimes ignarance Is bliss.
     
    But for now I will just enjoy NOT driving to the hospital every day and and I'll try to keep Ray warm, well-fed etc. He is entitled to a little TLC. He is so glad to be home. That is until the next "traumatic event" I guess.
  23. swilkinson

    no answers

    By swilkinson,

    I went to see Ray in hospital today and had the original heart specialist drop by. As team leader he has the say and so he told me he was discharging Ray on Monday if that was okay with me. He also said there really were no answers to what was wrong with him after all their investigations so they had decided to put him back on his old medications and send a letter to his treating doctor informing him of all that had been done.
     
    The nurse that came in after the doctors said she thought it was a good idea for Ray to go home as "you do much better at home". I know that is how I felt at the end of my long hospital stay in 1991 when I had viral pneumonia, but no-one had to look after me, I looked after myself. I want to know exactly how weak Ray is going to be and how much extra work that will mean for me. Am I okay with all of this? I think the answer is "No" as I still feel there should be some answers. No-one has a collapse, goes unconscious etc for no reason. So I think it should be investigated until there are answers. I suppose I should be grateful they have done as much as they can ( as we don't have to pay for it) but somehow I am still not satisfied.
     
    So life will go back to "normal" on Monday. I will pick Ray up after my class, about 2pm. I have two more classes to go so will either send Ray off to Daycare or apply for a carer for the day to enable me to do the last Monday. I think I have learned a lot from just being with the other 15 caregivers. But I am also more aware that no matter how much others try to help in the end we are alone with our cared for person, especially in times of crisis, in the middle of the night, when they have falls etc. No-one can be right beside us ready to help. There can be others involved in the care like my "five hours a week" professional carers, but ultimately we are on our own.
     
    I had requested an interview with a social worker as I felt I would be able to talk over our increasing care needs but was informed today that that was unlikely to happen due again to the illnesses that are keeping the hospital short staffed. I only saw the "aged concerns nurse" on the first day, never saw the occupational therapists again and Ray has had only two little walks with the physiotherapists so it has certainly been a time of minimal service. We are supposed to have seen a discharge planner too but so far she/he has not appeared.
     
    I've felt the last week or so as if I was in some kind of "never never land" where everything was a little out of kilter. Although the cough has almost gone and the fever subsided the after effects of the virus means I feel sluggish of a morning and am pushing myself to get the work done, visit Ray and come home again. I can understand Ray wanting to sleep all the time because that is how I feel too. But to sleep and not do what I have to do would result in chaos, as all caregivers know. There is no way a caregiver can slack off for the day, the work just keep mounting up.
     
    The other big job has been the moving of all our clothes etc from the old wardrobes into the front bedroom so the building of the built-in wardrobe can take place. After the cabinetmaker being here for two days I have some walls and shelves but it still has a long way to go. I know when something is tradesman built it is slower to be assembled and that is okay, but at the moment I have things stacked everywhere and somehow by Monday that has to change so Ray can fit back into the house again. He needs a clear passageway between rooms and no piles of stuff to distract him so tomorrow I will try to get some order back into the house. What a time for all of this to happen.
     
    I did manage to go out to dinner with friends last night. I was going to back out at the last minute as it was a cold wet night but managed to get myself to the restuarant and have a reasonable time. I think they did it to "cheer me up". I do still have some realtime friends and have to force myself to make the effort to keep in touch with them. It is a really big effort sometimes but without friends and supporters I would not get by.
     
    Thanks to you all for reading this. It is an emotional outlet for me just writing it all down. It truly does help me to sort things out.
  24. swilkinson
    The last few nights have been really bad for me for some reason. Maybe the anxiety which I bury quite firmly during the day comes to the surface at night when my will is no longer strong enough to defeat it. I try not to lay there going over the problems of the day, I try to pray and meditate and bring positive thoughts back into my mind but it is not easy.
     
    I had a friend who lived to be 102, when she was about 95 she discovered that being a light sleeper and waking up in the wee small hours gave her a lot more time for prayer. So she informed friends and church members that they could ring her with their problems and have a good night's sleep knowing that she was praying for them during the night. No need for us all to be awake, she told them.
     
    The EEG was done yesterday for Ray so I hope to find out if he has been having fits and if so is there a medication that will help with that. If he hasn't been having fits then I guess the black-outs are due to another reason, maybe TIAs and will have to be treated accordingly. It is all a bit of a lottery isn't it? The docs do tests from 1-5, 6-10, 11-15 etc and if you don't have any of those things well they put the problem in the too hard basket and you get to live with it, or die from it.
     
    This week I am having the built-in wardrobe fitted in our bedroom. It has lots of shelves and compartments so I am hoping it will be a place where I can not only put things but be able to easily find them again. I am replacing the other wardrobe with a linen cupboard so I can have the bedlinen etc where I can access it easily for quick bed changes - yes even at 3am I shoud be organised! The dressing table is going, it is old and long since served out it's purpose and I may need a lifter for Ray in the future so that will make the room for that. The bedroom is becoming more the sickroom now, not an idea I like but to be practical it has to happen.
     
    Ray still hasn't had any physio but he is on the list. The staff is working with low numbers as the nurses and therapists are also down with all the current viruses and so those who can work are just skimming the surface of the needs of the patients. The OTs came yesterday, did a ten minute assessment on Ray and vanished promising to get back to him if they have time during the week. I understand about the shortage but shudder at the thought of all those people who are missing out on the treatment they need because of the current batch of viruses and other illnesses that are plaguing the staff.
     
    I am in the usual predicament of having only a handful of people to turn to in the lonely hours. Being in the retirement bracket means most of our contemporaries, newly retired, are doing the round Australia trip, wintering in the sunny climes of northern Queensland and the Northern Territory or jetting off to Europe and Asia and doing the tourist thing there. That leaves me and the over eighties to talk to each other. Luckily I have a lot of nice acquaintances that I can talk to on the phone at night. But they don't drive the 45 minutes to the hospital so that leaves Ray without visitors too. I am sure a lot of folk are thinking of us, I just wish some of them would reach for the phone and give me a call occassionally.
     
    So I have been thinking of all the people I have let down in my time. I have always tried to be there for others but lately with Ray as my primary focus that has not been as possibe as it once was. Maybe I too have not reached for the phone, sent out a sympathy card or dropped by to see friends in hospital, in need or in sorrow. Maybe now is the time to mend some of those fences and get back into right relationship with some of those former friends. Or is it all too late and too hard once Ray is back in my care again?
     
    If I had a wish right now it would be to contact former friends and say: "I hope I was there for you in your hour of need."
  25. swilkinson

    Ray is alone

    By swilkinson,

    Ray is still in hospital. He has almost fully recovered from the pneumonia but is still awaiting further investigation of his anemia and also waiting for an EEG which may show that he is having fits now. I know these things need to be investigated but this is turning into a very long stay to fix up a few seemingly minor problems. As a Disabled Pensioner Ray is entitled to have a free hospital stay when he needs to so it is not the money it is the fact that he is not doing any exercise etc and so will be going backwards physically and mentally.
     
    I am a bit worried about the fact that Ray has been moved onto the surgical floor and is now in a room by himself. It is a tiny room used by Mums with neonatal babes usually, the hospital is designed so certain areas can be used by different disciplines so surgery has "borrowed" four rooms from Maternity to use for people awaiting procedures. Ray needs company to keep him interested in life so it is not good for him to be alone. I feel as if I should be there with him, to keep an eye on him and keep him company. I didn't worry when he was with other people as I knew they would all keep an eye on each other.
     
    The weather has turned bitter again and we had some cold rain today. I will be glad when spring comes and I can get going in the garden. There is always plenty to do, the weeds grow up, the herringbone fern takes over the back corner and I need to have the longer, warmer days to get it all sorted out again. The wind last night knocked down a couple of my flower stands and the pots were rolled down the back yard so I had to pick them up, scoop up the excess dirt and water them to help them settle again. A bit how my life feels at the minute I guess, as if the comfortable dirt has been knocked from around my roots and I am a bit exposed to the elements.
     
    To add to my troubles my new built-in wardrobe is just about ready to erect so I needed to clean the old one out. Today I started on Ray's section and found some pathetic mementos, a couple of "traffic infringement notices" from 1996 that he had hidden under a pile of underwear, a few hundred dollars in an envelope obviously put away with some intention that his confused dementia affected mind has now forgotten. I also found a pile of old posters similar to the emails we get these days, some were a page of of wise sayings, there were illustrated poems and stories of heroic deeds. I know he used to collect them to read out at Lions meetings when that was popular in the early '90's. It is as though I am cleaning out his room in the same way I cleaned out my mother's house to place her in care. It is a mighty sad and lonely feeling.
     
    So tomorrow I will not go to church but go and sit by Ray till lunchtime. I know he needs the company. I just feel so bad about how I feel about it. As if I no longer trust him to ask for the things he needs. I am not sure how he feels as he never says. This afternoon when Trev and I were there he just snuggled down under his covers and drifted in and out of sleep. I think he uses sleeping to pass the time now. Maybe I can rally a couple of other friends to go in on Monday when I will be in class. That way I will be sure that there is someone there to cut up his lunch for him if the nurses are busy and don't do it for him.
     
    Please keep us in your prayers. I don't feel very confident about Ray being on his own. He is precious to me and I don't want anything else happening to him. Where is that big roll of cottonwool you wrap those you love in?...lol.