swilkinson

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Blog Entries posted by swilkinson

  4. swilkinson

    waiting.....

    By swilkinson,

    Here I am, waiting again. This time for the continence nurse to come. I was told she would be here at 10.30am. Waited till noon and rang her office, her secretary said she would get her to ring me back. Finally got a phone call at 2pm to say how about next week at 10.30am? I have to have a report from this woman to get Ray
  6. swilkinson
    It was busy early in the week, quieter for the last few days then whoosh! The October long weekend was upon us and life sped up again. Our football code Grand Final was on Sunday night and we thought we would all watch the game on TV so Trev brought his new
  7. swilkinson

    Egg and elephant pie

    By swilkinson,

    I go to a local church, with three small congregations. I take Ray to the 9.30am service as I can get him up, showered, dressed in his good clothes, having had his breakfast and into the car by 9am. It is a bit of a rush but we manage okay.
     
    For the last six months or so I have been helping out with Sunday school. We have a man who is an ex-teacher who is the person in charge and me. That is enough
  10. swilkinson

    Happy Birthday for Ray

    By swilkinson,

    Today was Ray's birthday, it was also Daycare, Craft group afternoon but not Lions Dinner night so Trev and I took him out to dinner tonight instead. Of course because we were all out today we missed the birthday phone calls but I am sure some of the callers will ring again later in the week.
     
    Ray seemed quite pleased with all the fuss. The first greetings were by phone just as we were finishing breakfast. His sister Judy rang just as Jeff the shower nurse came in the front door. Jeff was more than happy to wait while Ray talked to his sister. She and her husband have been travelling through the warmer north during winter but are now back home in southern Queensland to get their gardens in order etc. A lot of retired Aussies do that, travel north into warmer climates for winter.
     
    Through the day, while we were out, his two brothers and a couple of friends rang him. I don't kow what happened at Daycare but the craft ladies certainly made a fuss of him this afternoon giving him the largest slice of cake etc. There was a special sponge cake filled with jam and cream and iced in blue and once he had blown out the candles the ladies sang "Happy Birthday" to him, twice! the second time because two extra ladies wanted to sing it as they were out of the room the first time!
     
    Trev and Ray and I went to our local club for dinner. Ray and I often share a seafood basket, it is a large serving and as Ray only has a small appetite now I dish him up what he says is a good serving and eat the rest myself. There is never any left! Trev had a steak dish and seemed to enjoy it. I think he is past the stage when he doesn't want to be seen out with his parents and is happy to help me take Ray places I wouldn't necessarily take him on my own.
     
    Our other son rang just as we got home and wished Ray a Happy Birthday, we had also missed two more calls. Ray also got some cards so did very well this year. Some years hardly anyone has remembered so it is good when people do remember and make an effort. Of course there was also another cake as he had to have another opportunity to blow out the candle and have another large slice. White chocolate mud cake this time...sugar high coming up!
     
     
    I saw my mum this morning but she was sound asleep and didn't wake in the twenty minutes or so I was there. I took another sweater for her and some blush pink nail polish for the girls to use while they are doing beauty care. They do make an effort to make the ladies look nice. Of course dementia patients often have strange haircuts as they won't sit still for very long! But I've noticed the girls do make an effort to color co-ordinate and keep them looking neat and tidy.
     
    I also stopped by and saw an older friend to catch up on some of her news. Mostly bad of course as it is when all your old friends and closer relatives are dying of various ailments. But her funny news was all about her two little great grandsons as she minds them three mornings a week between the time when her grandaughter goes off to work and they go to pre-school. She had a very funny story about getting stuck on the side of a steep hill with one of them hanging out the front of a three wheeled stroller and how an elderly gentleman came to her rescue. Thank goodness for the kindness of strangers ( and a sense of humour).
     
    So today was a good day, and we all need those don't we?
  11. swilkinson
    It is ten years today since I became full- time caregiver to Ray after he had been in hospital for six weeks and rehabilitation unit for three months. We had been on holidays when he had the stroke on 19th April 1999, followed by another on 10th May 1999 so had actually not been home since 8th April. He was so glad to be home but to tell you the truth I was scared stiff!
     
    When he was finally discharged into my care there was still an endless round of appointments to keep up with, visit to physiotherapists, OTs and other rehabilitation specialists to complete and a whole battery of testing left to do. For the first four months after he came home I also had Dad and Mum here, dear Dad for just four month as he died five days after a bad fall. The fall shattered all the bones in his left leg (he had bone cancer) and he died on 2nd January 2000.
     
    I kept Mum living with us; she was lost without Dad and her Alzheimer
  12. swilkinson
    Every year just before Spring I get a fit of the blues. It usually is accompanied by a head cold (yep, got one of those) and a feeling that I am stuck in one place and don't really know how to move forward. So that is the place I am at today.
     
    Good news, we got OUR shower nurse Jeff back today; bad news, he think he is being moved further south of us for most of his client list as that is closer to home for him and thus less travelling. It's a pity as he and another man called Len have been Ray's favourite Friday respite companions. I have always been happy to go off and leave Ray in their care. It has been more like having a friend visit than having a paid worker in the house. But all good things come to an end as we know. So changes again for us.
     
    I didn't go and see Mum today as I have the head cold. I can't go back until I am germ free. I took Trev to see her on Tuesday. She was sitting at a table and I knelt down and came in on her left side so she could see me. She now has macular degeneration and cataracts so very little sight left. I waited until she focussed and smiled and then told Trev to hunker down alongside me and change places. He did this and said in wonder: "Look Mum, Granma is smiling at me, she knows me." Which is probably not true but she was smiling because a small spark of memory told her this is someone she knows who is friendly. So darned sad she is so far into dementia now but until we have a cure so many older folk will end up the same way, a familiar much-loved parent, grandparent and friend with no connection to life around them or ability to communicate with those they love.
     
    Sometimes I have a feeling that life is sliding past me. It is to do with the fact that Ray's health is slowly changing again. As he is less willing or able to go out etc I am turning down more invitations, getting less time to contact friends and also losing the companionship our relationship used to provide. It is no longer possible to have long conversations with Ray and even short questions are so often answered now by:"I don't know" or "I don't remember". I know in the end that he will be like my Mum is now, nodding and smiling, sitting in an easy chair or propped up by pillows on a hospital bed. Not tomorrow, not the next day, but some time down the track.
     
    So what building blocks do I have that I can use to rebuild my life as it falls apart? This is the next question. And so far there are no answers as to do any activity for myself I need more care hours. They never stretch far enough as it is. Last week the lunch for Scallywags meant that I did only a portion of what I usually get done on a Friday as I only had 9am till noon instead of 9am till 3pm. It is impossible to take time for any extras I want to do. I am stretched with doing what I do now. I really do need more care hours for Ray. And at the moment I don't qualify so I am stuck. It is like trying to rearrange the deckchairs on the Titanic.
     
    I am finally catching up on my studies, I am two and a half weeks behind instead of three weeks behind. And if I stopped coming on here I might catch up a little faster. ..right? Wrong, coming on here allows me to vent and venting clears my mind so I then sit down and study with a clear mind. That's my story and I'm sticking to it ( apologies to givincare for using her motto here).
     
    So any bright ideas about how I might turn my life around, feel happier about the way life is going etc always welcome. You all know me so well now.
     
    The new thing I am doing (for as long as Ray is happy to accompany me) is Kid's Club at the church 3pm to 5pm on Wednesdays. I play tether tennis, hula hoop, throw the ball through the ring, etc with the younger group, then go and make fruit toast for the afternoon tea while another volunteer makes sandwiches, then after a story or a little role play they all sit down and eat, then out for more play, a craft, some more play and then in and I do a candle prayer to finish. It is very low key and the kids probably don't find it churchy but a good place to play with a good afternoon tea. Of course there are some rules but we make it all as pleasant as possible. We have some mums stay so give them afternoon tea too and ask them to join in as they feel they can. We have four volunteers from the church and about an equal number of mums for fifteen kids.
     
    Which of course is why I am wanting to do more, to get more involved, just small things like being able to go to Bible study etc. I am so restricted as Ray NEEDS his aftenoon sleep now and really doesn't survive well without it. Yesterday he slept from 12.30pm till 2.30pm then 5.30pm - 7.30pm, we had a late dinner and he went back to bed. Not as good as being able to sleep through the afternoon but better than last week when he had no sleep until he got home and was so tired and confused from lack of sleep that he really didn't function well at all.
     
    I guess there really isn't any easy solution to this and I am going to have to wait and see what the future brings. One day at a time, one foot in front of the other as usual.
  13. swilkinson
    As person with a mum in the end times of Alzheimers and a husband in the early stages of dementia I sometimes think I am going mad myself. This morning I was the other kind of mad, cranky as all get out.
     
    Ray and I get up at 7am, he goes to use the toilet, he comes out, I shower him and help him dress, we have breakfast etc. On the days he doesn't have a shower nurse come this is our routine, on the days he does have the shower nurse he has pull-up trousers on and gets dressed in clean clothes after his shower. This morning for some reason Ray turned off the alarm and went back to sleep. I slept on oblivious to the passing of time and woke up with a start at 7.55am. I got Ray out of bed and he went off to the toilet. I knew we were okay for time as our shower nurse on Thursdays comes at 9.15am so we have plenty of time. Not so! At that moment there was a loud banging on the front door. I answered it in my night attire and there stood a lady in uniform who said: "Hello Mrs W, I am XXX and I am here to shower Ray. ARRGGHH!!
     
    I said: "Oh no you are not." Actually what I said was not as polite and lady-like as that but in the end I did let her shower Ray as he began undressing as he does when the shower nurse arrives so there was no point in stopping her. As soon as the Nursing Services's office staff were there I phoned them and they got my honest opinion of their service etc. Of course it was "all a huge mistake and we are so terribly sorry" which is always their standard reply. Hey! they know I will pay for the service, they will make me promises and that will be that.
     
    I don't think our service providers have any idea that it is routine that helps us through each day. To a lot of them we are just names on a page. Mr S 8am, Mr W 9am, Mrs T 10am. We are not Sam and Jill, Sue and Ray, Grace and George. We are not real people, we are a "breakfast" a "shower" or a "trip to the podiatrist", we are just a job. Nothing could be further from the truth. We are carers and care recipients, the carers trying, with a little help to keep the one they love at home for a few more days, weeks or years. And a change of routine puts us under more stress and stress kills.
     
    That kinda spoilt my whole day. I had planned to visit mum alone in the hour while the shower nurse was supposed to be here, then come home and take Ray to do some shopping before our luncheon date. That didn't happen so I took Ray with me to visit Mum. Most of the ladies were sleeping although one of the aides was attempting to entertain them. Mum was making a moaning noise, not really distressed but as if she was half-singing. Apparently she does that now. That is the thing with dementia, new behaviour appears all the time.
     
    We didn't get as far as the shops but we did have lunch out which was good. Ray and I enjoyed the company of a handful of the people who still meet together from our old church. One of the over '90s is in respite care, she really should be permanent care though as she is certainly frail and confused. A dear friend had gone and got her so she wouldn't miss our company, which I thought was a kind guesture. He has lost his own mother and adopted this neighbour as a temporary substitute I think.
     
    We talked a lot about the good times we all had together over a period of twenty years so Ray, low on short term memory but okay with some of the past can still join in. They all make a big fuss of Ray which gives him a boost too. I appreciate these kind old friends who have known us for so long and are still willing to share our company today. Old friends who have stuck by us are very precious.
     
    Outside in the carpark I went to get my carkeys out of my pocket and out came a handful of stars and drifted down to the ground. I had swept the star-shaped sequins off the table after craft at Kid's Club yesteday afternoon but everything had been packed away so I was told to throw them into the bin. But my Scottish ancestors screamed out in fright at the idea of such waste so I instead I put them in my pocket.
     
    I told you I was going mad didn't I?
  14. swilkinson
    I went to the funeral today, it was a lovely day, clear blue sky and the sun had some warmth in it. There were crowds of people at the church and most went on to the internment afterwards. So between the church and the crematorium, about a twenty minute drive, I had a chance to think about life and death and many other things.
     
    At the end of our funeral services, however strict and formalized they may be, we have a song, chosen by the family, to fit the style of the person whose funeral it is. This is known, naturally, as the "last song". Now most do not have religious connatations although the person may chose something old and familiar like "Amazing Grace" for instance or "Abide with me". But I have been to funerals where the young person has chosen something manic and noisy and very heavy metal by a group I have never heard of but the song still reflects some aspect of that person's peronality. Most churches just ask that it doesn't contain profanity or have an "X" rating.
     
    Today's funeral had a country and western song "Leave him at the long yard" a song about a horse past riding who is to receive an honorable retirement and I think that was appropriate. I can never hear the song "Tears in heaven" without thinking of a friend of our boys who died young and I have other songs I think of in association with the person at who's funeral it has been played. So when I listen to a music program on the radio it can stir up all sorts of memories.
     
    So I started to think of songs for people I know, what I would have chosen for them if their funeral had been today. "You are my sunshine" was one of Mum's favourite songs but I wonder if that represents who she is? I always sing "My little Margie" to her as her name is Marjorie. For Dad we did have a hymn, one of his favourites and I like hymns too. Dad had sung in many choirs in his lifetime and I know he always loved to sing with a swell in his voice at the funerals of his old friends.
     
    Ray and I met at a dance. Ray was a good dancer and had at one time been a dancing instructor as well as a boxer so he had "the moves ". In those days the dances finished with old wartime songs like "Goodnight Ladies" or "Goodnight Irene" but then along came the song "The Last Waltz" so maybe that would be a good song for Ray.
     
    Our last waltz was actually at our daughter's wedding in 1994. The first stroke Ray had in 1990 actually stopped him from being able to turn around in a circle without falling over so we worked on that and he learned to do a four point turn holding onto me and that is how we danced. He danced with his daughter first , she had tight hold of him, then I came along and he changed grips and we danced about a couple of minutes but he was struggling by then. So sad, he was a divine dancer.
     
    I don't know what I want for me, my time isn't up yet ( I hope) and so there are so many favourite songs still to come. But for fun maybe one of those old music hall songs, like "Get me to the church on time" or "My old man said follow the van". Got to leave'em laughing.
     
    So what is your last song going to be?
     
     
  15. swilkinson
    Winter is always a time when the deaths in the neighbourhood and among family and acquaintances increase. We have lost a couple of much older friends so far this winter but Friday night another one of our Apex 40 members died. Ray and I were both shocked as it was another of our younger members, not one of those frailer members who we would have expected to die this winter. But that is how death is sometimes - sudden, unexpected, unrelated somehow to what seems to be happening. The good and the bad can both die young.
     
    Lynn (male) had been a member of our Club for many years, a great storyteller he had run for office in state parliament at one time. He lost his wife to a toxic virus in 2005 and after recovering from his grief managed to travel and fulfill some of his dreams, albeit alone. Then he had a stroke, was in a coma, came back from hospital to rehab and eventually into a SNF as none of his family would be a full-time caregiver which was what he needed then. He had right side deficits, no speech, apraxia etc and a fierce anger over what had happened to him. He developed heart problems, leg ulcers and battled depression and his anger issues.
     
    Apex 40 Club members have gone out of their way to make sure they kept in touch with him to the extent of hiring a small wheelchair friendly bus so he could come to meetings before he was able to stand and transfer into his daughter's car. Ray and I have kept in touch and the last couple of respites Ray has been to the facility where Lynn lived and enjoyed spending time with him as a result. All in all his recovery had been good and he could speak slowly, understand most of what was being said and even attempted telling a joke a couple of meetings ago. But on Friday night he had a massive heart attack and went to meet his Maker.
     
    So early next week I will go to his funeral. Ray will be at Camp Breakaway from Tuesday to Friday and I was hoping to get on with some study....right. Not a good chance of that I'd say. But not going to the funeral is not an option. Both his children who live locally have been good to him, taking him out of the hostel for special meals and family occassions and just recently taking him away for four days to catch up with No2 daughter who has two year old twins who he adored. So it is special to not only say "goodbye" to our friend but "well done" to his children for what they did for him. We all need to do that, thank family members for the effort they have made.
     
    Which brings me to ageing. We are all doing it. Those of us with glasses can take them off when we look in the the mirror, keep ourselves busy and forget the wrinkles, lumps and bumps, under chin hairs etc. But sooner or later we catch a sight of ourselves and...who is that? Which explains why we post our friends pictures taken in 2008 and pretend it is today or take 10 lbs off our weight, or make out our children are younger than they are (I've got a friend who does that) everything except to be honest that we too are ageing. Which means we miss out on some of joys of life, ageing gracefully and enjoying the stage of life that we are in right now. I missed a school reunion while I was away, the next one, in five years time will be 50 years since we all left high school. Hmmmm...now how old will that make us all?
     
    I constantly get phone calls from friends saying someone is sick in their extended family. With less people involved in churches these days I guess it is getting harder to find someone who will say: "I'll add them to my prayer list." If you weren't a praying person yourself would you want that? Seems so by the number of phone calls I get. Not that I mind, praying for people is one of the things that I do. I try not to add too many people to the list though, I have burdens enough without taking on more people to be concerned for. But as I said the ratio of needed prayers to praying people seems to be increasing. So I think of myself as a prayer partner with a multitude of angels praying with me.
     
    Ray is well but had a few problems earlier in the week, the result , I think of a late night and some unwise eating. I wish I could eat some of the food he can, icecream, creamy sauces...yummy but not for me. Well not for Ray either in that particular combination it would seem...unless of course he had a tummy bug as he told people he did...lol. And Ray isn't good at doing without sleep. Too many days without a nice long afternoon nap and he becomes tired and cranky and unco-ordinated and then we have falls and spills. It is so simple...those fatigue issues never really go away.
     
    Mum is well, she was asleep when I saw her on Thursday. I needed to see her as she had had another fall and the unit manager always leaves a message for me..in case I want to see her. She appears to be okay, no visible damage thank goodness. I saw her Friday and spent about an hour with her. I sit and hold her hand, or sing softly or just relax and stay beside her for a while. Sometimes she acknowledges my presence and sometime she doesn't, it no longer matters to me. It is as if we occupy the same space but in alternate realities.
     
    I can't sleep some nights, I have her and Ray on my mind too much. Now where is that relaxation tape? I think I need a virtual vacation.
  16. swilkinson
    Ray and I went to our Lions dinner last night. The Lions Club meets twice a month for a dinner meeting at one of the local surf clubs. This is a wonderful venue in summer, right on the beachfront, but a bit chilly in winter with the wind blowing off the sea.
     
    Last night we had all the usual business part of the meeting plus our dinners and then there was a guest speaker. Most speakers speak for 20 minutes so we are out of there by about 9pm. Last night it was actually a wine tasting, or rather a wine appreciation talk so those members who like wine much enjoyed the next hour and those of us who didn't or couldn't just hung around.
     
    And so the inevitable happened and Ray had an "accident" as soon as he stood up. He went off to the toilet and I waited until everyone else left and went into the men's toilet and cleaned him up. It is a very awkward situation really as I do keep a "kit" in the car but you really need a hand basin to do it successfully, so I did the best job I could and showered him when I got home.
     
    This kind of incident emphasises the difference between the carers and non-carers among us. A couple of the men realised something was going on and offered to stay but the five other women just walked out, not even thinking that I needed help. The person who stayed to the end was an off-duty policeman. I guess he is used to body fluids and knew he could help if needed.
     
    I am grateful to our Lions Club members for sticking with us for the ten years since Ray's strokes. To the best of their abilities ( which varies of course) they empathise or sympathise, visit or send a card when he is in hospital etc. They are just the normal "good people" you would find in any other part of society. And it is part of the Lions Charter that they help the needy and I guess to a certain exent that includes people like us.
     
    There is no light at the end of the tunnel for long term carers, luckily there are people holding candles to light our path. God bless them all.
  17. swilkinson

    wet feet

    By swilkinson,

    ....is what you get when you shower someone. So now I take off some clothes when I shower Ray. One day someone will come in and see me in action. What a funny sight . No wonder Trev says he has weird parents. Which is why I love Ray's shower nurses so much. They keep my feet dry!
     
    I am still having to go to the new place, Jasmine Court, where my Mum is now three or four times a week. I understand that because she now has no speech she needs someone as an interpreter. I can't understand why they don't just ring across to the section she used to be in so someone there can tell them her likes and dislikes, her ways of signalling how she is feeling, what she wants to do, when she is in pain etc. At the moment I am the one with the clues so it is me they ring. Then I go to "Jasmine" and have a look at her to make sure she is okay. So far she is.
     
    I went to for 20 minutes yesterday and another 20 minutes today. Yesterday they changed her room as another resident needed a room that was quiet (I'm guessing a relative complained) and so Mum is now in with three other ladies. I am not complaining as her room is now opposite the lounge area and that is where the nurses mostly are. So if she falls she should be visible! A nurse rang tonight to tell me her doctor has changed a painkiller to a heavier dose as they think she still has some pain in her hip joint from arthritis so she needs something stronger of a morning so they can dress her etc.
     
    Today I had an odds-and-ends day, which means I tried to get rid of a lot of small jobs I had been leaving for a while. I have a pair of jeans to put up but that will have to wait. I did do some of the other mending jobs plus some gardening, some ironing and I did think about washing windows....lol. That is as far as I have got so far, thinking about it. I also sat down and wrote some of those keeping-in-touch notes I write this time of the year to say we are still alive. Not everyone has email, particularly among our older friends, so I still send out some snail mail. I can't complain that no-one keeps in contact if I fail to do the same myself.
     
    Ray's three hour carer who was here today is a cheerful person who has little jokes he and Ray both enjoy. Today when I came home at the end of the time I was telling Ray about a young woman we know who had lost a baby at 20 weeks. The carer looked sad and said: "So did we." That is why you should be slow to judge, people are like icebergs you see only what is on the surface.
     
    Tomorrow is Ray's stroke support group's meeting. We will be able to go tomorrow and if Ray is feeling okay we will stay on to lunch. The meeting is held at one of our local clubs so the food is reasonably good and reasonably priced. If we can afford it we have lunch out once or twice a week. Of course that works better in summer as the fruit and vegetables are fresher and nicer. Frozen beans are frozen beans whether a professional chef cooks them or I do. So I don't want to pay a high price for a handful of cooked ex-frozen green beans on a plate.
     
    Trev has been particularly helpful the past few weeks and it seems as if he may have a job at last. Unfortunately it will be in Sydney. He will restart his cleaning business and sub-contract to a larger cleaning firm. He went down for an interview today and thinks all went well. I have enjoyed him being home and certainly in times when Ray has had a fall and needed picking up etc his help has been invaluable so I will really miss him if he has to move back to the city. I'll miss conversation too as Ray is not much of a talker but Trev makes up for that.
     
    I can tell by reading this blog that our life is on an even keel, no ranting or raving, no long explanations of how this or that is happening. Just the humdrum sound of everyday life.
     
     
     
  18. swilkinson

    the holiday blog

    By swilkinson,

    This is it, the holiday blog. We've been home three days and already the holiday feeling is disappearing and real life is taking the shine off of all those lovely memories. I am wearing a bracelet my grand daughter made 'specially for you Granma' and hoping that will keep them in my remembrance.
     
    Ray and I both enjoyed the holiday, it wasn't so hard to shower him this time as I worked out another way of handling the shower so it was quicker and easier. Not less messy..lol.. as one day I threw some warm water over him and it bounced back off his chest and I was soaked. So I learned I've got to watch the angle and pour it gently not splish!splash!
     
    The weather was 8 to 10 degrees warmer on average there than here but some days were overcast or windy and it was cooler then. But on the whole we spent plenty of time out of doors. We had a good deal of fun with the kids the last four days of their winter school holidays, a walk to the park, some games in the back yard, the usual colouring in with the five year old Naomi and appropriate games with the nine year old Christopher. Ray seems to pay them little attention but I think their parents had talked about that and they were okay as long as Granma was playing.
     
    Some of the highlights of the trip were: the first Friday we had a really full day out as we drove to the Daintree Rainforest area and went to the Discovery Park where there are abundant examples of the rainforest plants and interactive displays that show you animal habitats etc. There was a five story tower to climb to give that feeling of being in the canopy and lots of bush walks so Craig pushed Ray in the wheelchair and we got to experience the rain forest that way.
     
    The Cairns Show was on the second week so Shirley was busy ferrying her crew who collect money for their welfare charity budget at the gates, three hour shifts and mostly older ladies so she was very busy plus doing a couple of shifts herself. But on the Friday they took us to the Show and we had a great day out. I think Ray most enjoyed his hot beef and gravy roll for lunch and scones with jam and cream for afternoon tea. He watched the kids go on rides and stayed with Craig while I got to go on the ferris wheel, I did say "no" to the Dodge'em cars though, too many teenagers enjoying that one.
     
    On the Saturday we went to see over the naval vessels on HMAS Cairns base for the Open Day. There was unfortunately too little shade to put Ray in so rather than see him toasted in the sun we saw over two of the ships and then went in to get some lunch. It was staffed by volunteers from the Comforts Club and set up right by the water and cheap as chips so we all enjoyed that too. The kids ate loads as it was "junk food" like fries and tender strips of chicken and not a green vegetable in sight..lol... and we grown-ups were really ready for a cup of coffee to wash it all down.
     
    Both Sundays we went to their church services and enjoyed the difference between what they do and what we do in our more traditional service we regularly attend. There are a lot of Islanders there and the singing and harmony are really great. And some very enthusiastic teenage boys who love the drum set so pretty noisy too. And the morning tea to follow is a good time of fellowship for all. I liked the children's sermon my daughter gave, I think a lot of people get more out of those simple stories than the heavier sermon later in the service.
     
    On of the interesting things to come out of our visit to the Cairns Show was meeting a lady called Laurel who was on the Alzheimers Association's table. I stopped to look at the pamphlets and started talking to Laurel. She said her mother had recently gone into care, I told her my Mum had been in care for eight years and told her where. She looked at me and said: "I think that is where my mum is going too." It seemed unlikely but when I walked in to see Mum in her new "home" called Jasmine Court the person sitting opposite her was Laurel's mother. It is a small world indeed.
     
    I went in to see Mum today as I usually do on Fridays. She was transferred on Monday to another section of the nursing home to an area where people have both dementia and other affecting illnesses. It is a nice, bright area with two people to a room and they are up and dressed and walk around as they please all day long. She and about ten others had gone on a two hour bus trip so I went back later and just in time to see her walk in, not quite as confidently as formerly but definitely walking well. Thank you to all those who prayed for her recovery, our prayer have been answered.
     
     
    We finished our time in Cairns on Tuesday morning with morning tea at a cafe near a lovely stretch of tropical coastline. It really is spectacularly beautiful with its aqua water and silvery sands. We were at a table overlooking the beach so we could appreciate the beauty of the area and feel the joy of being with those we love so much.
  19. swilkinson

    what if....

    By swilkinson,

    This is not my "all about my holiday" blog. This is a continuation of some thoughts I had when I was in chat with a couple of other caregivers. We were talking about family support, or lack of it, a popular topic with all of us.
     
    So I wondered...what if.....
     
    What if it was me instead of Ray, laying there in that hospital bed in Bendigo in 1999? What as a woman in her early fifties would my fate have been? Would a sister who is "always busy" have volunteered to look after me? Would my family have rallied around and looked after me? My Dad with bone cancer, a mum in the early stages of Alzheimers, barely coping themselves surely would not have been able to do much. So I guess my daughter and sons would have had to take up some caring role. Or place me in a facility.
     
    What if my sister had volunteered to look after Mum and Dad so they had been able to stay in their own home longer? Would Dad had died old and tired and feeling like a burden because he knew that I had enough to do just looking after Ray without looking after him and mum too? I always feel he gave up towards the end knowing that he was beyond being that strong, loving man he had once been.
     
    I had done my best supporting them for a couple of years at home and then having them live with me. But with Ray doing therapy etc it WAS too much looking after the three of them. But I still managed to keep Mum with me for a further two years. And I continue to look after her financial affairs, buy her essentials, to be her Power of Attorney etc and visit her twice a week in her nursing home now as in her Lodge for the past eight years.
     
    What if all those people we thought of as friends had rallied round and instead of vowing undying love had done something practical, like bring in a meal, or mow my lawn or taken Ray for a drive so I could just sleep and sleep and sleep?
     
    We have had some wonderful friends who have done some loving acts for us, taken us to dinner, joined in activities to enable us to go on doing what we were able to do. Like the Lions Club men and women, the Disabled Bowlers team who helped Ray learn lawn bowls and the great people from Camp Breakaway a lot of whom are volunteers, who give me that three day break three times a year. Not forgetting our friends from another organisation who put the shower room in that has made showering Ray so much easier for me.
     
    There are others who have dropped by, given us a cake or flowers or enthusiastic hugs on meeting. They, the people who still support us in our daily lives, are the true heroes who help me as a caregiver to keep on going. And some do go on loving us, Ray for his quiet acceptance of all that he goes through and me for my joy in life and quirky sense of humour. And then there are those of you here who support us and pray for us and love us even though we may never meet face to face.
     
    Unfortunately Ray's family turned their back on him and of his two sisters, one visits once a year and one never. His local brother has a really good job, nice house etc but is too busy to catch up with Ray more than twice a year and only by phone. His other brother was invalided many years ago so I try to visit them every second year or so in Queensland, about fifteen hours drive from here.
     
    My sister did sit with Ray for two hours or so once a fortnight for a while and I was grateful for that at a time when I was getting too little help. And she has had us stay there so she has done a lot to help in her own way. And another friend sat with Ray while I continued to do Scripture in schools for a time. And our son Trevor who has been so supportive for the past three years. And our other son too, busy with his own little family but thinking of us still.
     
    Hard not to feel sorry for ourselves sometimes and do the "what if's" once again. But it is a sad place and one we should not visit often. Life is for living and we all need to live it to the best of our ability, whatever our handicaps and disabilities may be.
  20. swilkinson
    For all of you who have been praying, my heartfelt thanks but please don't stop! I need all your prayers to keep me afloat. Ray and I are going away on Tuesday to Cairns and I still have so many things to sort out, Ray's medications, our clothes and other needs to be packed and now another MAJOR problem..
     
    Today I minded my three local grandkids while their parents went to look at a house they are interested in buying as they are really growing out of theirs. Ray and I gave up a couple of other things to do it but I figured they don't ask often so I like to oblige if I can. Wow, was Alex, usually the happy sunbeam, miserable today! It could be teething or a cold coming on or something unknown as yet but he mainly cried and threw tantrums. He kept telling me he was a big boy but didn't act it.
     
    The other two were reasonable. Tori is going through one of those "trying to do my best" stages, probably the influence of her cub leaders and so she was "trying to be a good example, Granma". Actually she is a good girl mostly. I had her one day a week from six months old until she started school so we are good buddies. Which is why she is sleeping over here tonight, it is always a pleasure to have her here. And she will come to church wih us in the morning and join whoever is in Sunday school. I don't know if I am teaching or not, no phone call so far.
     
    In the middle of the parents coming back to collect the two little boys and us all sitting down together and having a catch up the phone rings and it is the nursing home - Mum has had a fall! How? I asked. Seems she got up and went for a walk pushing her over the bed table/trolley as a walker, bumped into some furniture and down she went. No damage they said but we need you to come in and talk about some options.
     
    I warned them this would happen. For the past eight years she has walked round and round the inside walking track of her Dementia lodge, round and round and round. We did sixteen rounds one day without her even catching her breath, for 90 she was fabulously fit. So she falls and breaks her hip and all the specialists say this is the end and she will not walk again - oh yeah? The nursing home physiotherapy aides had her up walking with a high arm walker yesterday. Today her brain kicked in and off she went by herself - no stopping her now, pushing her trolley instead.
     
    So I finally got to see the person in charge of her section about 3pm while Trev, who had been away most of the day, watched Ray and Tori. And it is the same old rubbish: "we can't watch her around the clock, we have others to see to, we are short staffed" etc. They would like my permission to restrain her. Well no, I am not giving my permission, this is supposed to be a safe place remember? It was the nursing home's choice to take her, knowing she has dementia etc and put her in the general section NOT the dementia section so now they want to restrain her? No, no, no.
     
    Keeping in mind I can't get a review over the weekend as all the staff who need to form a judgement are off, and she will be up and about tomorrow I didn't know what to suggest. In the end I suggested letting her sleep where she is and sending her to the dementia section through the day until something else can be worked out. No sense in taking no action and then having her break the other hip. They don't want to be accountable but they surely will get to be if something happens to her under their care. We paid a large bond for her to be in continuing care so we get what we pay for.
     
    I knew she would walk again, she is a tough little person, my little bright eyes, but I just didn't know she would do it so soon. And this afternoon as MY reward she said my name. Looked me in the eye and said: "Sue" as clear as a bell. First time in about two years. Wow.
  21. swilkinson
    Sad day today in many ways as Trev and I cleaned out Room 11 at the Dementia Lodge, Mum's home for the past eight years. The night nurses had packed it up for us in six rubbish bags! There it all was, just so big a pile of old clothes, photos and sun hats. Just the sight of it all made me teary.
     
    I could not have done it alone but with Trev's help we moved the dressing table and chair back here and sent some of the clothes over to the Nursing Home and tonight I have sorted the rest. It is still uncertain whether she will walk or not but she will still need warm clothes as they sit out in chairs and in the loungerooms every day. She will be assessed on Friday for a suitable chair and I will buy whatever is recommended for her. It will be her birthday present as she turned 91 today.
     
    I was so glad of Trev's help and I think he got his reward. When we went over to see Mum he bent down to give her a kiss and she put her hand up and stroked his hair, just as she used to when he was young, it was a real tender moment. He had to turn aside to hide his tears.
     
    This afternoon I went to the care providers focus group. This is a project called: "Providing Value in Care" and five of us were asked some questions about what we value in our care packages. I can say not all my comments were positive and somehow when you are honest others follow your example so I think they were a little surprised by our answers.
     
    Once again I was thankful that I have the strength to handle what I have as a couple of the women were still providing care for children who are now in their thirties. They were cheerful but you could also the tremendous strain they must be under. They had been faithful caregivers for a lot longer than I have been looking after Ray. I can't tell you their names but please pray for all those who's caring roles last practically until they take their last breath.
     
    All of this takes an enormous emotional toll. A few of you have put parents into a care facility and know what I am saying. I feel sad, guilty, concerned for the future both for Mum and for Ray and I. I know that with his conditions one day I will be making the decision on his behalf, or maybe someone else will be making it for me...lol. Caregivers get sick as well as tired, we so often neglect our own care while concentrating on the one we care for.
     
    Tomorrow I will put on a brave face and go and look at the small space, one quarter of a large room, that Mum can now call her own. This then, is what life comes down to - a bed and a chair. But maybe at the end of a rich life, this, and a kindly staff to look after us, is all we need.
  22. swilkinson

    stuck in the mud

    By swilkinson,

    You know that dream where you are running and running and not getting anywhere? well life feels like that for me right now. I have spent so much time going to and from the hospital visiting my mum that there doesn't seem to be much time to do anything else. So the housework is behind, the laundry needs a catch-up and I need a housekeeper to do all the 'extras'.
     
    My new course work is getting neglected as I am so tired at night. I am over a week behind with the reading, questions etc. I said that I would be fine with it if life went on as normal and nothing dramatic happened to Ray or Mum. I guess Mum falling and breaking a hip at 90 qualifies as dramatic!
     
    I can never undertand why when someone is transferred to a care facility they are well looked after but when they go from there to the hospital for more intensive treatment, like Mum has had to with the broken hip, that care is suspended until they come back? No-one from the Lodge goes in to visit and a relative, preferrably the one who is the holder of the Power of Attorney, which is ME has to take full responsibility for care again.
     
    However there is some good news as yesterday as Mum got transferred to a little geriatric unit about ten minutes from here. It used to be a little cottage hospital when the population this end of the Central Coast was sparce in the late '40s but now the population is 350,000 the small hospital has been renovated and is just used for convalescing oldies. So elder care is their speciality and they will understand how Mum is and what to do for her (I hope).
     
    So today I went to her room in the Lodge and got some nightdresses and cardigans and a dressing gown and took them to the hospital. The slippers were beyond belief, one very old pair and three odd shoes were all I could find in the wardrobe. Mum has been wearing slipper socks but that will not do for where she is now apparently. So one new pair of slippers for a new phase in her life.
     
    Yesterday I went to see the nursing home where mum is going when she leaves hospital. It is a little old fashioned but it too has just had a renovation so there is a new outside deck with deck furniture and in the rooms the walls are freshly painted. BUT instead of having her own room she will be sharing with two other ladies. It is not what I want for her but the carers, trained by the old facility, will be well-trained and kind and some of the other residents will be familiar faces as they were once at the Lodge but like her have become more frail and less active.
     
    I have never thought of Mum as being in a nursing home as the Lodge where she was was fairly new and had a nice courtyard with sails to prevent the oldies getting overheated in summer, the internal walking track, the bus trips out once a week, the concert parties and other entertainment , a lot of willing volunteers, a lot going for it. She had her own large airy room with an ensuite toilet and shower. The place she is going to is a nursing home. I am glad she is so far down the track now that she will not notice. Then I won't feel guilty either.
     
    All of this has been a tremendous strain, on me and Ray as in the most part he has to go where I go. The trips to the hospital, 40 minutes each way in the pouring rain have taken about three hours out of each day. But I don't regret it. It is true you get better treatment when you have relatives coming in and out who question what is happening, how you are, what the treatment is etc. And the ladies she has shared with have been very nice and eager to help with this "poor old lady" they have found themselves as companions to. And maybe it has given them a better understanding of living with dementia.
     
    So on Friday she will have the staples out and then probably be transferred out as they can do little else for her again unless the physios say she has a chance of walking. That is what I am praying for right now - that she will walk again. After the pain has lessened and she is off the painkillers that might happen. She is still wiggling those toes and there is no sign of atrophy so it might happen.
     
    People say: "do something for Sue" and to tell you the truth I no longer know what to do. Ten years as a caregiver, to more than one person, is a long way down a very muddy track.
  23. swilkinson
    As most of you know my little Mum had a fall on Saturday 13th June and broke her right hip. As her daughter and power of attorney holder I had to make the decision about an operation to pin it. I wanted it done as although she is 90, almost 91, and has severe dementia walking has been her life. She has walked everywhere from a young age and I could not bear to have her laying on a bed dying by inches, not allowed to weight bear.
     
    So late Monday afternoon the orthopedic team operated on her. I went in Tuesday morning and there she lay, pale and listless, I thought she was dying. At lunchtime the nurse asked me to feed her and although she had her eyes shut and seemed asleep the mouth kept opening and she did eat about a quarter of the meal plus a little of the apple pie dessert. I felt relieved, if she had refused food I really would have felt it was the end of her life.
     
    Today when I went in there she was sitting up in a chair, two bright eyes turned toward the door. She has macular degeneration so probably relies on her hearing more than her sight but she was alert, ready to engage, not dull and listless like yesterday. Today she ate all her lunch and licked her lips. She is back in control again.
     
    The nurse asked me to stay for a while until they could put her back into her bed as this morning she had cried out and cowered away from one of the male carers. I know that there was in her background suspected child abuse, physical stuff, but maybe there was more than that too. A lot of the old families kept "secrets", so sad. Anyway with me there making soothing comments they were able to make the transfer. I overheard the wardsman telling one of the nurses: "the daughter was there so it all worked out okay."
     
    I drove over to the hospital, a 40 minute drive, in pouring rain but thanks to those on chat this morning I drove my chariot with the spikes on the wheels and "spiked" all those who rushed past and threw water over my car. Take that....spike. I also wore the new red outfit and matching boots that "Tink" my fairy godmother "whished" for me this morning and took the thoughts and prayers for a safe journey that all who answered my post for prayers have been sending.
     
    Thank you, fellow chatters and lovely supportive friends on this site wherever you are. It has made such a difference to know I have your support. And what would life be without the fun and foolishness and fantastic support that being a part of chat brings? I was speaking to a friend on the phone about it after I got home. I told her about all you wonderful people out there, the friends I may never meet but who mean so much to me. Whatever else there is in this world nothing beats the power of true friendship.
     
    So God bless and keep up the prayers for my little Mum with two bright eyes.
  24. swilkinson
    I've unexpectedly got a couple of days off as Ray has gone off to Camp Breakaway for just a couple of nights. This came about because of a funding rule that says all donated funding for semi-charitable organisations must be used up by the end of the tax year (June 30th) and as they had just received a small grant they decided to have the regular clients over for a special weekend. I only found out about it last week, had the interview Tuesday and this morning off Ray went. Wow, what a pleasant surprise!
     
    So today I didn't have to rush back from my time off by 2.30pm as I usually do as I had all day. It was nice to call in and see a friend, have an afternoon nap, get up and prepare what I wanted to eat etc. As luck would have it this is a planned weekend but at least I will be able to do things at my own pace, not concentrate on what is happening to Ray at the meetings etc that I have to go to. And Ray will be having his usual lovely time at Camp Breakaway and I am sure not thinking of me at all.
     
    So what will I be doing? Tomorrow morning ( Saturday) I will be going to his stroke support group, we haven't been for a couple of months so I am sure there will be some catching up to do. The last time I saw everyone was at the picnic in May so that was nice and informal. The suport groups do a great job as advocates for stroke survivors and their carers, as well as disseminators of information etc. I don't see anyone between the meetings as this is a coast-wide group and services a population of 350,000 but there, as here, we have the common bond of stroke, so that is enough to make it all worthwhile.
     
    After the meeting I will stay on with a few of the folk for lunch, we used to do that before Ray had the swallowing difficulties, not so much since then. Most of the survivors that attend the meeting are much less disabled than Ray, some are still working part-time, some retired to spend time with family etc. There are also several members in their early forties so they seem to form a group within the group though that doesn't seem to matter. I have a few friends there that I made at the womens weekends I went to so they always give me a smile and a hug. It is good to know there is support for me there if I ever need it.
     
    Since the Scallywags group which is a part of this stroke support group has been meeting fortnightly and not every week Ray hasn't been as enthusiastic about it. He seems to be withdrawing from company again, more reluctant to talk on the telephone, less enthusiastic about Daycare, really wanting to just stay home much of the time. I can understand this as the cold days don't make me enthusiastic about going out as much either. But social interaction is important to both of us so I won't give in to the "why do we have to go out?" questions. In my case it is to stop me getting cabin fever!
     
    I am reading with some envy other bloggers descriptions of their holiday plans. Yes, I know, it is your summer, my winter. So you have the opportunity to travel, go camping, catch up with family in far off places and I don't. But I still have the return visit to our family in Cairns to look forward to so I am content. They all enjoyed their four days in Sydney at the Congress but were glad to get home to the much warmer weather of lovely northern Queensland. I will be glad to spend some more time with them up there in July. Among other things we are going to go to their local Show ( a bit like a State Fair but on a smaller scale) which will be an opportunity for me to buy my grandkids show bags...delightful to small kids everywhere.
     
    On Sunday Trev and I are going to meet up with some of his cousins for a family picnic. My sister's family of four children, ten grandchildren, have a picnic for the birthdays of the month. As I have a birthday in June and so does my grandson Alex we have been invited to join the clebrations. I know it will be cold and will wear appropriate clothing but as long as it is fine we should all have a great time. I don't get together with them more that once or twice a year although most live not much more than an hour's drive away but again it is a case of getting Ray ready with some difficulty and getting him to where the picnic is held etc. I find it daunting in winter to take him out in the open where it is often windy, muddy under foot and because of his inactivity he really feels the cold. Maybe blood thinners etc contribute to that too of course.
     
    So why am I still up writing this when my computer tells me it is half an hour past mid-night? No reason except that I can sleep in a little tomorrow, have a sit-and-enjoy breakfast, read the Friday's paper, something I usually do around Sunday...lol...and pretend for a while that I am a lady of leisure. Good for a couple of days but then Ray will come home again and I will be back to my normal busy self.
  25. swilkinson
    The past few days I have been feeling very tired and probably not my usual bouncy self. I think it is just post-holiday blues. It is cold, mild by comparison to some of your winters but none the less winter to me. It has been raining on and off and so is cold and damp and for a few days we lived without even seeing the sun. Every time I go outside I track in mud. Woe is me eh?
     
    There was to be a big birthday BBQ today, the weather is fine, the sun almost shining but the little boys have the diarrhoea and so they can't come over, so I am cooking soup and wondering if there will be another day ahead when we can get it right and finally get that birthday cake alight with candles. Having a winter birthday is the pits, this postponing it until....has happened to me a lot. And the weather often puts a dampener on events too. Oh for a summer birthday with a picnic at the beach and fresh seafood and...well it's nice to dream. Of course when I was born, in the northern hemisphere I was a glorious summer baby, my fault that I came to the topsy turvy world called Down Under eh?
     
    Today I went to church as usual. Yesterday was an unusual day as one of the organisations I belong to provides the catering for a local drama festival so in my six hours of volunteering I got to watch five one act plays put on by local drama groups. As I rarely get to see a live production it was really a treat for me to see the world through the plays performed. All plays, twelve in all are one act plays with a cast of two or three, all must be under an hour in time including stage setups and demounts so it is fairly basic but very worth watching.
     
    Ray is enjoying being back home and out on his verandah again but I am not enjoying the clean-ups that result from his incontinence. It is as if we are starting all over again. There really is nothing I loathe more and I can see why in a lot of cases this is the straw that breaks the camels back and results in putting someone prematurely into a nursing home situation. Even with love in my heart and the best will in the world it is still a beastly job to have to do. And I know a lot of other caregivers feel the same.
     
    I have tackled my first assignment for my course, I have two a week. I will sit down and draft the other this afternoon and hopefully then start working on the assignments for week two . I had planned that Thursday was going to be the completion date for one, Sunday for the other but it is amazing how life gets in the way of my best laid plans. I had an extra appointment and a care worker came to review Ray's paperwork on Thursday and that was enough to throw the system out. All I can hope to do I think is have them completed by the time they are due for marking late in July. I am not aiming to get a distinction in the course, just to cover all the work and get a pass.
     
    One of the things that is making me feel blue I think is the fact that my Cairns family are in Sydney for three days at the Salvation Army's National Congress. Sydney is only an hour and a half's drive from here but due to their work load they will not get up to see us so it is a case of "so near and yet so far". I love my kids and I love my grandkids and frankly I think I am pining for them a little right now. It is unfortunate we are such a mobile people these days and families suffer a feeling of disintegrating into small pieces as we move further away from each other.
     
    Ray has been difficult too the last few days. He is back in denial. Every time I ask him to do something and come back he hasn't done it. Small things like picking up his electric shaver and having a shave before we go out, or cleaning under his fingernails, fetching his teeth from his room etc. these are all easy jobs for him to do. But he has got used to sitting while the good natured aides do everything for him while he was in respite. It always takes a week or two for him to get used to being back at home again. And when I ask him why he hasn't done something it is because I didn't tell him, he couldn't find them etc. So I am back to having to find, fetch and carry again.
     
    I should stop feeling sorry for myself and get up and do something. Sorry for the whinge. I hope tomorrow will be a day full of lovely surprises for us all. Dreaming again eh?