swilkinson

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  1. swilkinson

    trying to be thankful

    By swilkinson,

    There has been no health crisis this week for either Ray or Mum. Last week we thought we were going to lose Mum and at her age, 93, and in her state of health that is to be expected. I don't want her to leave suddenly, I know she won't live forever but I do love her heaps and she is an essential part of my life. I don't want to lose Ray either. I know that is a selfish attitude in a way but it is the way I feel right now.
     
    I visited my Dad's grave today. I just do that from time to time. I know it is only his body there but the grave site is on a sloping hillside looking over a small lake, a sea inlet really, and a peaceful place to stay and pray for a while. My Dad was such a good man, kind, generous and always willing to give a hand to anyone in trouble. I will never stop missing him and the wonderful relationship we had. I'm frequently told people still remember him with respect and thankfulness for his kindness to them. He was a humble man and never wanted thanks and praise but people like him are rarer now than they once were. They are "salt of the earth" people.
     
    Ray has settled down again since the course of antibiotics this time. He is still anaemic so needs a blood top-up and probably a course of iron tablets again. I think that might brighten him up a bit as he is still somewhat lethargic. His doctor is still keen to do a whole heap of tests to make him "better" I would prefer he was comfortable and well-looked after. He is getting used to the routine of the Nursing Home as I am so I know when Bingo, Pianola music, bus trips and concerts will brighten his day.
     
    We had Trevor's 37th birthday celebrations with Ray last Sunday. Trev got there early and so was able to go to the Nursing Home kitchen and got Ray's lunch plated up and we had chicken and heaps of salads that Edie bought so had plenty to eat. We were so glad it did turn out a fine day after a week of rain so we were able to have a picnic in the park. Unfortunately our other son although he did say he was coming and bringing his family dropped out at the last minute. I think his denial of the changed relationship between his father, myself and his family, due to his father's illness and the strain that this is creating for him is going to be a problem to him in the later part of his life. We do try to keep the relationship open to him even when he chooses not to participate. Maybe further paturity will solve some of this.
     
    I am learning to "zip the lip" when the new interchanges in my household become tense as they do from time to time. I think in the long run it is a good idea for Trev and family to move in with me but there are a lot of "gaps" where we do not see each other's point of view, which is probably a generational thing. I am enjoying the mornings with Lucas, we mostly have breakfast together out on the front veranda, and some mornings coffee with my daughter in law before she goes to work. It really is good to have conversation and laughter in our house. To the extent that our neighbour now asks: "What were you all laughing about last night?"
     
    I find life okay some days but other days are overshadowed by memories and I still do some crying. I am treating it as grief, parting is indeed such sweet sorrow. I have Ray and yet I do not have the Ray I once knew. I am a wife with a husband estranged by illness. It is another stage in the stroke jourey and one I will some day get used to I am sure. I am still trying to get used to the separation, particularly at night when I would help him get ready and tuck him into bed. Just that feeling hat he was here with me made me feel secure.
     
    Even though this is none of my making it is surprising how much guilt I seem to feel. Now I am not a partner, not a wife, I wonder how to get on with this part of my life? Friends say: "just keep busy" but that makes for a long day. I still spend three hours most day with Ray, and visit Mum and with Christmas coming I am busy ticket selling for Lions and doing extras for my church groups. But those nights kind of open back up Pandora's box and I have nightmares and toss and turn. I guess there are many others who do that too.
     
    I think we do not choose our destiny, it chooses us.
  2. swilkinson

    Ray stabilizing again

    By swilkinson,

    Sometimes in the past people have seen me as something I am not – a cross between Wonderwoman and Mother Teresa - saintly, selfless, able to do more than most people, fully able to cope with whatever comes along. And of course I am none of those things - I am just a person doing what she can for whoever asks for her help. At some personal cost, as all caregivers and nurturers realise but I’m happy to do it anyway. It helps makes some sense out of all the experiences I have had.
     
    Now I am a long distance caregiver, not a hands-on one, more transitions are taking place in my life. I am seen by some, my older son included, as "having nothing to do". I think a lot of people did realise the busyness of being a caregiver with all the added responsiblity of thinking for two, planning for two, working for two etc, now it is the anxiety and despair all this causes that is not recognized. This may have changed to a dull ache, a worried, sleepless night when the seizures and other medical crises occur, more phone calls, longer visits, or even two visits in a day.
     
    At Ray's nursing home I want to help Ray but am helpless to do much now Ray needs up to three people to help him shower, change, dress etc. I wish we could go back to the stage when it was possible for me to do all of that for him. My job is more like a companion, bringing news in from the outside world, liasing with the doctor, talking to the staff, and then at home phoning family members and passing on news. I still oversee a lot of what is happening in his life day to day though.
     
    My next door neighbour has “rescued” his Dad who usually lives in Sydney but has had a series of falls and broken some ribs. Neighbour brought him home thinking looking after Dad would be easy. That is never the truth, all caregiving is hard. He finally came to the realisation that his shower over a spa was not something his Dad could access. The solution was to ask if he could use Ray’s shower, so tomorrow we’ll try that. It is a bit weird I suppose having a neighbour in to shower.
     
    The friend of neighbour’s I sat with last week is recovering in hospital now. He was sent home from hospital too soon after what should have been routine day surgery. Because of a drug reaction he became very ill, luckily decided on an ambulance and a return to hospital or what was a near disaster could have turned into a fatality. I felt a bit of a failure after that one, but at least the cats got fed by me while everyone else was away.
     
    Ray has kept relatively well the past week; it was Mum I was called to go to on Monday. She certainly looked deathly pale when I saw her at the nursing home, with shallow breathing and low pulse rate. I just usually sit alongside her bed, holding her hand until she resurfaces from what are probably seizures like Ray is having. I just need to be there until she comes around again, to make sure she is fine. Once again she could have been dying but rallied and was okay, the next morning she was sitting up and eating again. She is such a frail little person yet must have a mighty strong heart to keep on going as she does.
     
    I have had a lot of odd jobs to do this week as well as continuing to pack down for the move of Trev, Edie and Lucas to my house. That happened this week and although there is much more to be done to clear out the small house they were living in a lot has been achieved. We can now sit and watch television of an evening, we can work in the kitchen, together and singly, and Lucas and I are establishing a tradition of having our breakfast together out on the front verandah on the dry warm mornings. We also play ball out the back when I have the energy.
     
    Lucas came to see Ray with me on Saturday. The staff are pleased to see “family” and as we sat with Ray at lunchtime Lucas got two small servings of dessert, a pineapple pudding with ice cream and a pink milkshake. I sat over a cup of black coffee as usual and Ray had his easy eating meal of veal casserole with vegetables followed by yogurt. It is good to have Lucas’ company and good for Ray to go with us out the back where there is a park and watch him kicking a football around or riding on his skateboard as he did this time. When he got too hot doing that we were able to sit under the shade of some trees and just enjoy being outdoors.
     
    Ray has hardly any lasting memory now. I asked him yesterday afternoon what he had done for the day: “Nothing, just sit here.” One of the aides said to me: “Wasn’t it great Ray won at bowls today?” This is a game of closest to the jack or kitty whichever you call it and each resident who wants to play has two bowls to bowl at the jack. This is carpet bowls using a long rectangle delineated by tape in one of the big lounge rooms, luckily no bias to deal with which makes it easier for old folk. Ray must still has his eagle eye when it comes to bowling.
     
    I am glad they are taking him to as many social events as possible and out on at least one bus trip a week. I want him to socialise until he is bedridden and unable to do so. It is such a pity that these events, bus trips, word games, bingo and bowls happen but leave no trace in his mind. It is as if shortly after they occur the slate is wiped clean. I know dementia progresses and there is nothing I or the doctors can do about it. I am glad he still knows who I am and how we are related but I am wondering how long that will last.
     
    Yesterday I sat in front of a giant Christmas Stocking at Bay Village, our shopping centre with an ex-Lions’ Club District Governor, who is a a member of our Club, and sold raffle tickets. The Stocking is a big fundraiser so we sell tickets for six weeks, eight hours each weekday, six hours on Saturday and Sunday until Christmas Eve afternoon when it is drawn. The roster takes a lot of staffing but sellers also disseminate knowledge of Lions as purchasers often ask questions about Lions Clubs and our Club in particular. I met last year’s Christmas Stocking winner who said it was a shock when he got the call but the family enjoyed dividing up the contents, giving some away to friends and neighbours.
     
    Charitable institutions such as Lions are finding it harder and harder to recruit members so we are delighted we have had two new members since June and one more to be inducted soon. I found being a Lion strange at first but now enjoy each meeting and the company of other Lions in my Club. During the ticket selling period I have eight four hour selling stints so will get to meet up with some of my friends who use Bay Village for shopping too. It is strange how many people I am acquainted with who shop there. I find it an enjoyable form of volunteering. Sadly Ray was always my selling partner right up till the end of last year but now that is way beyond him.
     
    So my life between now and Christmas will show some changes. I need to go to social events I always went to with Ray, on my own. No sense in hiding away in a corner and being miserable (though I do some of that too) I need to participate in life. I miss Ray being here so much. It is as if something is always missing. I miss him in the house, on the verandah, in the car when I drive somewhere. I know he and I should be together. It is simply not possible now.
  3. swilkinson
    I had an interview with Ray's doctor today. This came about because he wanted to do some further investigation of Ray's condition and wanted some input from me. We had a deathbed scene last Tuesday, a two and a half hour period of Ray being only semi-conscious and that frightened us all, I don’t want that happening too often.
     
    The doctor said there is not a lot he can do after a series of what I think could be seizures but he is calling brain infarcts now. Whatever they are called it seems there is no getting them under control. He seems to think all of this is coming from the brainstem.
     
    The medication change he mentioned was Plavix out, high doses of aspirin in, warfarin (coumadin) was suggested but everyone agreed the risk is too great. Not sure I am happy with that one so I asked a letter be sent to the neurologist for his opinion. Not sure what the result of that will be. I would like another MRI done but not sure that this is achievable given Ray’s present condition.
     
    Ray seemed to have a chest infection at the weekend and was again dribbling, sleepy and not at all well. Trev was there on Saturday and said he helped feed his father late in the afternoon when dinner arrived and he didn’t have the strength to pick up the spoon. Ray was given a broad spectrum antibiotic and was certainly better on Monday when he went out on the bus in the morning and to bingo in the afternoon.
     
    I find myself clinging to hope, reading online about medication I know Ray can't have. I find myself wondering where this will all end, although we all know where, not just when. My poor old love seems to sit and look sad and not do much else now. I had hoped he would stabilize, even get better maybe but I have to acknowledge that he is nowhere near where he was six months ago. I find it all so disheartening.
     
    I feel sometimes as if I am living with a death sentence hanging over my head. This is not so much about the death of Ray but the death of life as we knew it, life together, life with both of us having an input into it. This is exacerbated by the fact that I am still downsizing, cleaning out, throwing away what seems to be years and years of old correspondence, not just “stuff” but stuff with memories attached to it.
     
    I am happy to have Trev and Edie and Lucas move in, I just didn’t realize how much I would hate having to clean out so much, how much I hate the changes to the way things look and where they are located. I am sure I have mentioned before that it feels like I am moving out not them moving in. It is all so silly in a way, not that I have ever liked change but surely I am a “grown up” and could accept it a little more graciously?
     
    I visited Mum today and she is the same as she has been the past year or so. She is in her big comfy (hard to push) chair, kicking her feet, rolling up her dress from the hem up, which seems a fairly normal dementia occupation. Today she was in “church” in the biggest lounge room with about forty others so I joined her there.
     
    The chaplain as her facility is in a wheelchair after suffering from polio as a child. She is a lovely bright, loving cheerful person and I am fond of her. She has two assistants one of whom is the mentor for the Carers’ support group at Mum’s nursing home that I try to go to each month.
     
    This week’s meeting was the Christmas break-up afternoon tea and we had the theme “Hope and Humor” and had to tell a story from our life mentioning those two things. It was very interesting hearing what others had to say on the subject.
     
    It is good to join with others for these end-of-year get-togethers. I am not sure “party” was the right term this time as most of us ended in tears. The changes to a loved on brought about by dementia is very hard to cope with. I wrote on Asha’s blog as part of a reply: “We only get to live life forward, from today on. We can't change the past, what is done is done. We need to come to acceptance of what was, what is and what will be.” And I think this is what our mentor was calling us to do.
     
    I wish I had acceptance of all that is happening to Ray and I and to us as a family. As Ray goes downhill I am not the only one affected, the children and grandchildren are too. They either suffer by their closeness or by the fact that they can’t cope (as our older son can’t) and find the relationships changed by what is happening.
     
    I always say I am lucky in those friends I have managed to keep and I had another example this week. On Monday when I came home I had a bunch of carnations stuck in my doorway. They were buds really but already had a strong and lovely perfume. It is always wonderful to receive flowers, I have never forgotten the ones sent to me from New Jersey from a friend I made here at Strokenet, the wonderful Sarah Snow.
     
    This was the second gift of flowers I had had with no card attached. I was a bit worried in case it was a “secret admirer” as a friend of mine had gone through that when her husband was dying. Hers turned out to be a neighbor who thought she was wonderful, mine turned out to be a 94 year old friend who sent them to me via another friend as a source of color and comfort in what she saw as a dark period in my life. I thanked her and told her that was so thoughtful but asked her to attach a note next time please.
     
    As the song says: “I get by with a little help from my friends.”
  4. swilkinson

    a time of blessing

    By swilkinson,

    This weekend I have been with 18 wonderful women (25 if you include those who just came to dinner on Friday or Saturday night). This was the first WAGS Women’s Weekend I have been able to attend in full for some years. Perhaps this time I was able to attend because I no longer have full responsibility for Ray and to tell you the truth I felt a bit strange about being there. But although I am no longer a hands-on, full-time caregiver I am still overseeing Ray’s care. But I do see life from a slightly different angle.
     
    I don’t know what happens to November but being spring, daylight saving and the lead up to Christmas makes it “fast forward time”. I have to keep up with what I have to do and where I have to be. Today one of the aides at the SNF mentioned the Relatives Party Lunch. It is the first time I had heard of this so I will have to find out more. A lot of Care Facilities do have a Family Day near Christmas (not sure they are allowed to call it a Christmas Party now) so I will see if it is just for me or if it is for all family members and where I have to put our names down, how much time it will take, how much we have to pay etc.
     
    Ray has been put on a broad spectrum antibiotic for aspirational pneumonia again. It is only a week since he finished the last course of antibiotics but he may be able to have a maintenance dose to prevent it from reoccurring. I am a bit concerned about this as I was able to keep it at bay for years and since he has been in care he keeps getting it again. I wonder if this is adding to his confusion because as we all know infections can do that.
     
    I visited him on Friday afternoon. He was in the tiny hairdressing salon and had a very nice haircut and looked so clean cut and well groomed it looked as if the years had been rolled away. Trevor went to see him late on Saturday afternoon and he was in his semi-conscious state. Trev did eventually wake him up enough to feed him his dinner for which I am grateful.
     
    Today at lunchtime when I visited Ray was not as well as on Friday but in his right mind definitely. I know it is good days and bad days but I want to cling to those good days and make them the normal rather than exceptional days. I am not capable of seeing any of this in perspective. I want for Ray to be as well as he can be, happy as he can be and still somehow feel a part of the life around him. I do not want him semi-conscious, isolated, staring straight ahead. In my logical mind I know that stage will come but I don’t want it yet.
     
    My sister apparently visited Ray earlier in the week. She said she had a spare afternoon so decided to see him. Unfortunately she still doesn’t visit Mum but there is nothing I can do about that, too much time has elapsed for that to make any difference now, for either of them. I was happy she had been to see Ray as it added to the picture for the staff members who have seen Ray’s wife, son and sister-in-law now. I think it makes a difference to care as the person in the bed becomes part of a family picture and with family dropping in and out of the SNF there are more eyes to witness what is going on and maybe a casual remark about care can sometimes improve care.
     
    The “moving in over the weekend” did not happen while I was away. I think Trev starts out with a plan for the weekend but then finds there are other things to do. He has almost set up the front room for Lucas and moved some more boxes up into our storage area. Between us we need to get a whole lot more done during the week. I’ve done nothing since the middle of last week so it is partly my fault.
     
    And so back to writing about the weekend away. I had as a room mate a survivor, a woman in her late fifties who I worked with years ago. She is not quite as affected as Ray is, she still has her full mind but sadly no use at all of her left arm and walks stiff legged with a brace on her left leg. Despite her obvious disabilities she gets up ‘dancing’ by using a chair as a support and swaying her body to the music. She lives alone but gets a lot of help from her younger daughter who lives not too far away. This weekend the daughter dropped her luggage and the shower chair at the motel for her mother and picked it up again. Sometimes it is small things like that that allow survivors to keep their independence.
     
    I so admire the women survivors who come with us every year especially their courage and the effort they have put into retaining their dignity and remaining “able bodied" in the sense that they use what they have got to the full. I realise that it is precisely because they do this that they are able to come to the weekend. They are small in number and it would be great if we could reach others in this way, give them a weekend away, a weekend of fun and frivolity and friendship. Not to mention, food, wine, music and massages...oh those massages.
     
    Looking at stroke recovery in our community is like looking at the 10% of the iceberg that is visible above the water, forgetting that 90% of it is hidden. I am so glad for the weekend I spend with the women caregivers and survivors; it is a good eye-opener for me. For two days I forget my own troubles and am thankful for the things I still have. I try to give time to listen to the many stories people are willing to share and to reflect on my own. It is a time of blessing.
  5. swilkinson
    Ray had the heart monitor on on Monday. I was glad the staff said they could manage it in-house. After all that is why Ray is in the nursing home and not at home - they have NURSES there!
     
    Late Monday afternoon, as the staff was waking him from his nap he had another seizure. Once again they applied oxygen and after a while he came out of it. The charge nurse rang me to tell me it had happened but not to worry as he was fine now.I am hoping the heart monitor picked up the changes in activity and it will help with a diagnosis. If not I am wondering if a sleep study would work? And maybe pick up what happens to his brain as he wakes up? With my luck of course he would wake perfectly, so unlike what he is doing now.
     
    I went in before lunch yesterday and he was fine, just a bit tired. There was a BBQ so lunch was in one of the common rooms. Carers are allowed to eat free on BBQ days, pity I can't eat sausages. I cut Ray's food really fine and he only left a couple of spoonfuls. As he is so slow eating everyone else was eating ice cream and he wanted one! Of course he then started choking again. One of the old ladies said it was my fault as I gave it to him. Not true, one of the kitchen helpers did. Of course I could have objected but the man has to have some treats surely?
     
    I got a phone call from his doctor about 6pm asking if I could please come to the nursing home as he was again in a semi-coma and the doctor feared that this time he might not survive. Of course I left just as I was and got there 20 minutes later but by then the doctor had left. He had left a script for something "to keep him comfortable" I asked that it be used only as a last resort.
     
    At home if Ray seemed extra sleepy and I needed him awake I often tickled his feet, which he hated and always reacted to. So I got his hand lotion, turned back the bed clothes and massaged his feet, putting light pressure under the sole of his right foot. He reacted by trying to pull it back. I saw then that he was returning to consciousness so sat the bed head up so he was in a sitting position and offered him some thickened drink.
     
    After I had got most of the drink into him I went in search of food, his dinner had been thrown away by now of course, and an aide found me some yogurt. When I had given him some of that I put the head of the bed back down and allowed him to go back to sleep.
     
    I do agree with the doctor that these episodes may be doing him harm but am still hoping we will find a solution to the problem.
     
    We discussed some of this in chat today and I told them how Ray used to be hard to rouse from sleep after the 1999 strokes and in summer I used to rub his feet with ice to wake him up. Seems cruel but it worked. I guess that could be called "stimulation"? I know some people respond to smells(aromatherapy)some to sounds, some to touch, some to other forms of stimulation. I sometimes annoy Mum into saying "don't" she still does that if I tickle her neck, even though she never actually speaks now. Daughters (wives) can be so pesky! When Ray did wake up he was still starey and hollow-eyed, not really awake, but ate and drank which I thought was the main thing to stop him from being dehydrated.
     
    When I got back from the nursing home I went over to tell Trevor everything was okay this time. He is still the one most sensitive to his Dad's health issues. He was with us in Queensland when Ray had the first stroke in 1990 so is most aware of what happens after a stroke and how traumatic it is for everyone. He and Edie insisted I had dinner with them and sit for a while. They are good that way. I had food here but it was just nice to eat in company.
     
    I found Lucas' reaction interesting. When I took the phone call he went over and put his arm around Trev saying :"It will be okay Dad, won't it GrannySue?". He was pleased when I came back and said to him that Pa Ray was okay now and would be better after a good night's sleep. In the 18 months we have known him he has got to love us both I think and that is an unexpected blessing.
     
    I didn't sleep much, kept flicking on the light and reading for a while. I am really good at filling my day and keeping the emotions at bay but after mid-night is a different matter.
  6. swilkinson

    sunnier days

    By swilkinson,

    I've been moping for a few days. I am still trying to come to terms with what is happening with Ray and the fact that the days of he and I living together are over. When I sit beside his wheelchair in the courtyard at the nursing home some days we could be back here sitting together on the front verandah as we used to do. But then I look at him and I can see the changes, the pouting lips, the dribbling, the increasingly vacant look. All signs that more brain damage has happened.
     
    I try to do something with him most visits. I get there before lunchtime and help by cutting up his food. Then we go to some activity if there is one or I take him back out to the courtyard and read to him. I am reading one of the James Herriot books about the life of an English Vet, one in the series : "All creatures great and small". It is funny but typical of life in a country town with the Vet tackling the animal ailments of the neighobouring farms.
     
    On Thursday I took Ray for a stroll in the wheelchair. Just down the road a bit from the home is a pharmacy with an ice cream freezer chest. We stopped and I bought him a cup (bucket?) 97% fat free, and got a spoon to feed him with. We found some shade and I sat on a park bench nearby. I put the first spoonful in his mouth - fine. Put the second spoonful in his mouth and he coughed, spluttered and choked. He made so much noise the pharmacist rushed over to us to see if he could do anything. Ray calmed down after a while and had the rest of the icecream that was mostly melted by then. I guess if he had died you could say he was "killed by kindness".
     
    I will do it again but take a thickened drink too next time and a face washer and a whole bag of other equipment. Reminds me of taking the kids to the shops, same procedure I guess. Apart from that he seemed fine. I left him playing 8 number bingo with an aide. He still likes to be involved in something like that, I think it reminds him of his Camp Breakaway days.
     
    I only got to see Mum once last week, on Monday, but visited her again today. Mum is stable, sleeping mostly but still opening her mouth for food which is what is keeping her alive I guess. I still visit her by her bed and when she is in the big comfy chair I take her to one of the lounge rooms or activities room. I figure she can hear better than she can see and still likes to be around people.
     
    She will kick her feet if she hears music so today I took her to the big lounge room at the hostel end of her building to hear a choir of local school children. These were about 30 10-12 year olds singing a program for nursing homes as they visit three in a week and then come back in four weeks time to do their Christmas program. They came around and said "hello" to the residents at half way break which was a nice idea. I loved their rendition of "Light a Candle" sweet voices and sincere faces and that glow that kids have about them. It was good to be there and Mum's feet kicked along with the music.
     
    Ray has the halter monitor on today so I will get the results later in the week. It will show if he still has the arrhythmia or if it is Atrial Fibrillation now. I hope the results simply mean a change in medication as I am sure he is unsuitable for an operation. I know the young doctor he has now wants to do what is best for him but his extensive stroke damage, his age and current conditions also need to be taken into consideration. I would hate for him to die on the operating table.
     
    It is hot today. I will have to keep cool and do my housework and yardwork early in the morning and in the cool of the evening. I intend to enjoy this summer. Trev and Edie and Lucas went to the beach for a BBQ Saturday afternoon and met up with Edie's sister and her family. I didn't go as I wanted to ring my daughter about 6pm.I spoke to my dauughter and she told me her husband has gone to see his mother as she has some health probems. It will be the fourth anniversary of Craig's Dad's death today so I guess that is one of the reasons for the panic attacks she is having. With that in the back of my mind I hate to burden Shirley with my troubles so said very little about what is going on for me. It is easy for us to keep on looking for sympathy when we should be looking for the silver lining of the storm clouds of life instead.
     
    Sue.
  7. swilkinson

    An award for caring

    By swilkinson,

    Ray and I joined the WAGS (Working Age Group for Stroke) in August 2006. Ray had already joined the weekly at that time discussion and lunch group for men called Scallywags and was enjoying the male company. When a man has a stroke and has to stay home with his partner he can really miss the kind of company he found by working so Ray really enjoyed meeting with the other Scallywags. I just enjoyed the time to myself as at that time I didn’t have carers coming in and Ray and I were together 24/7.
     
    I’ve blogged a lot about WAGS over the years, the meetings, the personalities, the Women’s Weekends, the Carers Dinners and Lunches. The people of WAGS have been a big part of our lives. It has been our “real life” support group. Ray hasn’t been to Scallywags much this year. He has had so many things happen to him and although he can’t walk at all now his mobility has not been good all year. We have only been to a couple of meetings too and I haven’t been to any of the luncheons.
     
    Despite our absence our friends there have not forgotten us and decided to nominate me for “Carer of the Year”, an award handed out at the Stroke Olympics held north of us at Newcastle each October. Ray and I have never been to one but the reports we have had back have been glowing as our caregivers and survivors come back with medals for scrabble, putting, darts, croquet and a dozen or more simple sports. Everyone says it is a great fun day.
     
    On Wednesday night I got a call to say I had been awarded “Carer of the Year” for supporting other carers both locally and internationally through my work here on Strokenet. I was amazed and humbled as I am sure there were many people more worthy of the award than I am. So on Thursday the secretary of the WAGS group and her husband delivered a trophy, mine for a year and an inscribed glass plinth which I get to keep. I was really overcome by receiving it. It is not something you think about when you are a caregiver that some organization will award you for what you do out of love.
     
    So it is down to the amazing people here that I got this award. Without your support and encouragement I doubt I would have been able to keep going looking after Ray for as long as I did. You all know how sterile life can become and how burnout hangs over us all like a little black cloud? Well the support of all of you allowed me on many occasions to ignore the cloud and wait for the sunshine to come out again.
     
    I’ve told Ray about the award but I doubt he took the information in. Even the news that we are to become grandparents again in June seems not to have been stored. Trevor told him once and I’ve told him a few times but he still seems not to remember. I don’t think his memory works on much now. He is a dear soul, my soulmate, and I visit, sit with him in his room, in the common rooms and in the sun out in the courtyard. I read to him, help him have lunch, even help feed him when he seems too tired to hang onto the spoon or fork which is happening more and more now. But I know he will not even remember I have been there some days.
     
    If I seem a bit sad these days, I am. It is taking a lot of time for me to reconcile myself to this parting of the ways, this separation due to illness. The finality of it is cruel. I am here sitting in front of my computer but he is not just in the next room gently snoring, he is miles away. After 43 years it is not death that has parted us but stroke damage and dementia. And of course I know I am not alone in this as I see the sad farewells in the nursing home every visit as one goes “home” and one stays behind to be taken care of by others.
     
    Why did the last stroke take so much from Ray? Why didn’t he recover 80% of what he lost as he has with some of the others? Or is recovery of 80% less and less likely to happen? I try to keep optimistic, to keep praying and visualising him well but it doesn’t seem to be working this time. All I am asking is for him to be well, to survive this weekend without another seizure, to be able to hold a conversation, to give me a smile, much the same as I was wishing for Mum a few years ago. It seems such a little to ask.
     
    But never fear acceptance will finally come as it has so many times before. With each change comes some challenges, a struggle to rationalise, an attempt to philosophise and in the end an acceptance of the new reality, the “new normal”. We all have to go through the process, survivors and caregivers, each of us fighting to keep back from the edge of depression and the black hole that will swallow us up.
     
    I get by with a little help from my friends...as usual.
  8. swilkinson

    a gloomy blog

    By swilkinson,

    This morning I found it difficult to get out of bed. Not like me as I usually spring up and out, ready for the day. Twelve years of caregiving and always the alarm went off and I was up! Of late I have the alarm on the morning news and just lay back and listen to the headlines for a while. I know that I am stalling but it seems as if this is a part of my life now.
     
    I find the nights the hardest to cope with. In the day I am busy, outside in the garden, inside the house tidying, sorting out and trying to get the house to where Trev and family can move in. In the middle of the day I am with Ray, supervising his lunch, reading to him in the courtyard, taking him for a walk in his wheelchair. I talk to the staff and know most of them by name now. I talk to the other women who come in daily as I do and we form an informal support group. I know I look at them and think “if she can, I can” and I am sure they look at me and feel the same.
     
    At night, after the evening meal, I watch television for a while, come on the computer, phone one of my old friends, knit, sew and crochet, anything to hold the darkness at bay. But I still sometimes wake up from where I went to sleep in my armchair crying over the fact that I cannot bring Ray home again. I know it in my reasoned daytime mind but at night my mind says: “where is my husband, he should be home here with me”.
     
    We have been back here in our own house since 1984 and I seem to have accumulated a lot of memories, well junk really, and as I sit and sort it out it is so hard to throw any of it away. The old school reports, postcards from friends, old magazines with that recipe or article I wanted to keep. I did it with Mum’s house when she moved into care and it took me six weeks. Now I am throwing away so many memories. I know in a way this is a preliminary to moving Trev and family in but somehow it seems more like throwing away the past Ray and I shared. Yep, I am a pack rat for sure.
     
    I know I cannot bring Ray home again. So far I have not even taken him out in the car. He cannot stand up and hold his own weight, cannot walk, cannot....so many things. And I know this is our new reality and I have to accept that. At the home they move him with a Stand-Aide and it takes two of them to maneuver him into bed. I keep thinking that if I had the boys with me we could move him between us. I never had this problem with Mum when she went into care as her problems were old age and Alzheimer’s but she could still walk so I just put her in the car and drove her away from the home for a few hours. I cannot do this with Ray.
     
    Ruth, I have just read your blog, had a cry and decided to be brave and put down some of what I am thinking in words for everyone to see. It is not a pretty blog, a bit raw and confronting, It makes me uncomfortable just writing it. I am hoping by doing so that I will see it for what it is – my reality.
     
    I am often where you are now. I am still not reconciled to the fact that Ray is in a nursing home and I cannot bring him home. I am still getting used to going in there with my "smiley face" on and being bright and breezy with the staff and taking him out into the sunlight etc. I know this is not what I want to do, I want to bring him home, go on with our lives but logistically it cannot be done. I would never be able to afford the extra pairs of hands I would need to bring home a man who needs three people to take him to the bathroom, shower him etc. I hate the reality of all that.
     
    I read the other blogs on here and wonder how some of the people like Sarah, and Missy, Steve Mallory’s wife can care for their very disabled loved one in their own home as they do. I think my stumbling block is that Ray is both physically and mentally affected by his stroke. He has no logic and no process thinking, so even if I say: “right foot forward Ray, now I will swing the left foot forward, now you swing the right” he cannot follow that instruction. So he is unable to do anything to help himself or to help me help him.
     
    I’m sorry, those of you who are not at this stage yet, to cast these gloomy thoughts in here. Just remember that it is mine and Ray’s story, twelve years on from a couple of major strokes and not everyone’s story. I remember the ending of one of my favorite TV series, which went something like: ”There are xxx millions stories in this city, this has been just one of them”. The next blog will be more cheerful, I promise.
  9. swilkinson
    I had a bit of a meltdown and left chat abruptly today. Those participating in the chat were as usual talking about the difficulties of caregiving. Okay I know all about that, but it is no longer today’s concern. My new concerns for Ray are different. What to do about his new conditions, whether he is on the right medications, whether the staff are giving him enough fluids, is he getting the right food, cut up the way he wants it etc.
     
    I am having trouble reconciling being a caregiver without someone in my full-time care. Sure I am still a caregiver to Ray but it is one step removed. I stay with him when he is hospitalized; I sit by him in the nursing home for three or four hours a day. I push him out into the courtyard, read to him, show him movies or episodes of his favourite TV shows on our portable player. I go to the nurse with his complaints or with my own queries. I still Google his medications and check with the pharmacist on whether he is on the right medication for his various conditions. I even stay and talk with the doctor. But I don’t stay with him 24 hours a day as I did before.
     
    I wish we had a new name for those who are separated by their loved one’s advancing illness, the sort of illness that has taken Ray into a nursing home because his care needs are higher than one person (me) can handle. I wish I could feel that I am still his main caregiver but somehow I don’t. The staff of the SNF now handle his day-to-day needs. I feel like an imposter, a loser, a person that can no longer cope. I know it is irrational to feel this way but it is how I feel right now.
     
    I go to a few other sites on stroke support or dementia support and on one dementia support site there are a lot of “midows” married women who like me are separated from their husbands by the progression of the disease. Like me they visit, sometimes for years, before their spouse succumbs to one of the more common causes of death, strokes or heart attacks, pneumonia, the frailty of old age, other illnesses such as cancer, and their journey together ends. NO, no, no. I do not want Ray to die. I just want us to live the way we once did – together.
     
    Now I need to rationalise all of this. I cannot go on doing my “wishful thinking”. It goes something like – “Ray will get better and I can bring him home”, or ” the kids will all move closer and between us we will be able to look after him” or “maybe if I used all our combined savings I could hire someone full-time for a while and then I could bring him home”. Okay you know where I am coming from so I guess you could think of some more scenarios.
     
    We have SNFs and other care facilities because we need them. People get old and frail and need care, Ray got sicker and frail and needed care. It is logical for others to say to me “honey, you have done your best for twelve years. Now it is time to turn his care over to others." My head agrees but my heart says: “NO, no, no.”
     
    So maybe I need to change my status back to “family” and do a “family” chat instead of a caregiver chat now. Maybe I need to sort out my feelings a bit more so I know when to post on a current caregiver’s pain and when I need to realise that I have had a lot of experience but that is changing now. I need to come to grips with the reality of my new situation.
     
    We have two experienced caregiver chat hosts in Sally and Sarah. Sally is always on Tuesdays and Sarah and I share responsibility for Thursday nights, though we are often there together. Maybe I need to start a new chat for people who are like me, once removed from the problem of 24/7 care, still caregivers but not actually hands on now. I will have to think about it. I have loved being a chat host and making friends who seem closer some days than those I used to have in real time. But I want them to have the best advice, and I am not sure that is what I can give them right now.
     
    My life has changed and as we all know: life changes and it doesn’t change back.
  10. swilkinson
    I’ve just had a few days away with friends. The holiday was booked at the beginning of this year and if Ray had been home he would have gone into respite for a week or so in order for me to go. It was a seaside resort with cabins, caravan sites and tent sites about two hours up the coast from here on a beautiful bay. Our club mainly took the cabin option but some brought their own vans.
     
    Trevor said all would be well as he would monitor my messages, collect my mail etc. I left several contact numbers and also advised the nursing home staff that my son would pass on a message if they needed me. Seemed like a plan but that was not how it worked out.
     
    Apparently Ray had a seizure on Monday, which adds up to one a week for four weeks, and then a "turn" on Wednesday which is when the staff started leaving messages on my answering machine. No calls to my son at all.
     
    So today I went in to the nursing home to try and sort it out. The staff nurse said the doctor said the "turn" may have been a slight heart attack and so the doctor wants Ray to have a heart monitor for a 24 hour test. I am not sure he will leave all the wires attached as when he was in hospital he pulled out both the catheter and the canella.
     
    I didn't feel up to arguing after a three hour drive so said I would think about it over the weekend and discuss it on Monday. He is not a candidate for a defibrillator or pacemaker so I don't know what the monitoring will achieve apart from confusion and frustration on his part and probably mine if I have to sit by his bed for 24 hours!
     
    It was great to get away and not think about the problems I left behind at home, to sleep in, visit with club members in the other cabins, have a BBQ under the stars, walk on the beach and enjoy good company, with not a care in the world. It was hard to come back and find Ray's health and his care is still as much of a problem as when I went away.
     
    It was a little daunting being “Sue alone” as with this particular group Ray and I have shared a lot of friendships. They have been very supportive to us over a lot of years. We have spent a few weekends away with them and also been to conventions with some of them and enjoyed their company over a 28 year period. Not as much over the past few years of course as Ray has not been as mobile or able to happily change environments.
     
    I shared a cabin with a couple and another woman who was recently widowed. We got along just fine. The majority of members remember Ray back in his best years so that clouds the issue of my putting him into a nursing home. I think they can accept that he is sick but maybe not see how sick. I could see some looking at me across the room and nodding to me rather than coming over and talking to me. It is a hard adjustment to make, I know that.
     
    I had some time to think while I was away. My widowed friend and I discussed some of the hazards of being a woman on her own. Of course a lot of the common ones, like doing the things the “man of the house” usually does I have faced up to anyway. There is still more for me to do as I am still the person responsible for Mum and Ray. She acknowledged that and that I still have a lot of decisions to make on Ray’s behalf. Her husband died of cancer so she did nurse him and knows some of what I am going through.
     
    I know some of the other club members relate to what I do for Mum as they too have looked after aged parents, both at home and in a care facility. It seems common to find among the caring population people in service clubs, who are practical by nature and fit into that category somehow.
     
    The male half of our club members belonged to a service club called Apex, now almost defunct, that helped out in rural communities, their service work included establishing in some small towns community based care facilities and sponsoring help for disabled people so they have giving hearts. Just seems harder for them accept when it is one of their own that needs the care but we are all ageing and will be there ourselves one day.
     
    I am glad I had the break, sad it did not work out for Ray, a bit anxious about what I should do for him to ensure his care need are met appropriately.
     
    PS Lucas fell off a jousting pillow at his school fete last Sunday and has broken his left forearm. He has it in a fiberglass cast and is okay with that. He has gone away with his Mum and Trev this weekend to some friends in the country. I have my fingers crossed that he will not do anything foolish while he is away!
  11. swilkinson
    I have been packing up my house so that Trev and family can move in. Originally they were coming to help look after Ray but when Ray had to go into care I decided they might as well move in anyway. They want to save a decent deposit on a house and I want them to be able to do that so it is only supposed to be a twelve month’s arrangement. Trev has been so good to Ray and I and it was partly due to his help that I was able to have Ray at home for so long. I feel as if I want to do something that will help him out now. All the time I needed him he went out of his way to be helpful.
     
    He and Edie and Lucas are off to see “Mary Poppins” the musical in Sydney tomorrow, they won tickets to the show and an overnight stay in a nice hotel in a radio contest. They were to go next week but managed to get tickets for tomorrow night as that suited them better. They will leave after lunch and settle in before going to the show. Neither Trev nor Lucas has seen a big production musical before so they are in for a treat.
     
    I had a disappointing visit to Ray today. I had other things to do this morning so didn't go to see him till mid-afternoon. When I arrived he was wheeling himself around in his chair. As it was a lovely warm afternoon I took him out into the shady part of the courtyard garden. When I looked at him I saw he had what looked like a mobile phone poking out of his pocket.
     
    When I asked him whose it was and what he was doing with it he said: "I have been ringing you to come and take me home." He hasn't done that for a while. At the hospital he talked someone into ringing me a couple of times so I had emphasised to staff at the nursing home that it is like a fantasy to him, going home. Luckily he needs someone else to dial the phone for him as he only half-remembers our number, we have had two digits added in the last five years and he never remembers to add them. I suspect the staff member who gave him the phone knew that and so decided he was safe to have the phone.
     
    His theme then for the rest of the visit was "I want to go home." I tried to change the subject but that is all he would talk about. When I explained that I wasn't "allowed to take him home”, not until he gets stronger, there are too many safety issues etc, he turned his back to me and wouldn't talk to me. In the end I returned him to his room. He still wasn't talking to me and had one of the other men call the nurse so he could get into bed.
     
    The nurse came out to see me and asked if it was what I wanted, I said no but to go ahead and put him to bed if he was insisting on it, which I could hear he was. I didn’t want to make a fuss and get his blood pressure raised as he might have gone into another seizure, another reason I cannot take him home. I felt as if I had a rock in my chest where my heart used to be and cried all the way home.
     
    It is not an easy thing to admit that Ray is beyond my help now but he is. It is so dreadfully sad after 43 years of marriage. I am trying my best to put on a brave face and trying to reach a new normal but many times I just can’t face the truth. I have been sorting out boxes of old photos and there we are, young and happy, looking like a married couple, at dances, at weddings, out with the family. We had many good times and only since the major strokes in 1999 has life been tough on us.
     
    Being separated but not widowed or divorced is a very strange position to be in. My friends think it is great I finally have Ray in care and can now achieve some sort of life of my own. So far I have only done that in a very limited way. The separation is too raw yet and I don’t feel I want to take on something new or make any changes. You can’t move on with your life when you are still firmly attached to your partner.
     
    Ray needs me as his spokesperson and interpreter. I have to make all his decisions for him. I have to pass information to the doctor and to the staff, provide him with clothes, recommend treatment, look after his financial arrangement and pharmacy needs. There are so many things I continue to do even though technically others have taken over my caring role. I am guessing it will be that way for some time, probably for the rest of Ray’s life and that could be some years yet as he is still a relatively young man.
     
    Although the nursing home can never give one-on-one care like I can on the whole they have been very good. They seem to have an idea now of what Ray likes and dislikes of how to approach him to get his co-operation, of when to ring me with a problem and when to try something out themselves and see if that works. He has been out on the bus twice, is taken to the community rooms for “concerts”, special morning teas and out to the courtyard for a BBQ lunch, all without prompting from me. That compares favourably with where Mum is.
     
    I am just very lonely and my life seems very empty.
     
    I asked Trev today if we could bring Ray home, just for a couple of days and see if that worked. He said firmly: “No Mum that would just upset both of you, you know that.” And I do. I am upset now but can imagine how much worse it would be if I brought him home only to take him back in a worse condition. Seizures, falls, TIAs and mild heart attacks have changed Ray even over the past few weeks making him harder to look after and in need of more people to look after his needs.
     
    This is not just my story, it is the story of many in our community whose partners have serious medical, emotional and mental conditions that modern medicine as yet has no “fix” for.
  12. swilkinson
    I am still trying to decide where to put Ray into permanent care. Where Ray is now is good for the stage he is currently in, where he can use his good leg to self-propel himself around in his wheelchair. He has access to the gardens straight outside through the French doors in his shared room. His room mates often open the door for him. Where Mum is you have to ask staff to be able to go outside.
     
    The ancillary staff members have shown me where to make myself a cup of coffee now so I can have one any time and when I go to the dining room to help Ray with his lunch the girls bring me a cup of coffee to the table. The nurses and aides seem very caring there too. The facility has nice gardens in closed-in courtyards. There are plenty of shaded areas too and plenty of parking but it is 25 minutes drive from here.
     
    The advantage of where Mum lives is that it is closer to home and I know most of the staff. It is also closer to our local shopping centre so I can buy a "thick shake" on the way, maybe even push Ray to the centre in the wheelchair if I have one of the family with me. Where he is now is more isolated.
     
    Both facilities seem to be good so it is a hard choice.
     
    Ray was very slow on Friday; he kept dropping the fork at lunch so I finished up feeding him. It could be the change in anti-seizure dose. I hope not another TIA. Poor man, he is so over this I am sure. He kept telling me he was tired and "just wanted to go home to bed". I almost cried every time he said it.
     
    On Saturday I spent six hours in hospital with Ray. He was unresponsive at breakfast so the nursing home staff said, so after monitoring his pulse, blood pressure and sugar level and finding all results good they left him there. Someone came back later and he seemed to be sleeping. He was not responsive at morning tea time, but again seemed to be in a deep sleep. Then at 11am the staff decided it was getting serious as they could not rouse him and decided to ring me. As I was not home so they called the next number on the list, my younger son.
     
    It took my kids about an hour to remember what I was doing and Trevor finally caught up with me at the nursing home. I had had morning tea with some friends from Ray's stroke support group. I guess I will have to have another mobile phone so people can reach me and stop panicking! Being without one has allowed me to be “out of reach” when the in-home carers were here but it is different when the nursing home staff need me to contact them urgently.
     
    The ambulance again took Ray to the local hospital as they did last Sunday and again they carried out tests and said there was nothing really wrong. So we wonder if the seizures are stroke related or dementia related? We don't know. No new treatment was recommended although they did do a lot of blood work etc. I left at 6.30pm with the in-patient ambulance due to pick him up in an hour or so.
     
    This morning one of the nurses who was on yesterday was still anxious about what course of action we should have taken. Is it wise to just keep him in bed or did we do the right thing sending him to the hospital? Two serious seizures in less than a week is too much. Surely something must be out of balance for this to keep happening?
     
    Ray was marginally better today. The morning staff left him in bed to rest, I didn't object. Ray and I didn't go to the Sunday concert instead we did some word puzzle words after lunch and after twenty minutes I could see he was struggling to keep his eyes open so I lowered his bed head down and settled him for a nap. He doesn't look well and his voice was weak but he may be just tired from the exhausting day yesterday.
     
    I know there must be others here who have had experience with seizures personally or within their family so any advice would be very welcome. The whole thing really worries me right now.
     
    Sue.
  13. swilkinson

    more cold, wet days

    By swilkinson,

    I’ve been away for a few days and Trev got to sit with his Dad in hospital on Sunday when Ray had another seizure and the nursing home staff sent him to the nearest hospital for more blood tests. He has to have his seizure medication increased. Today they gave him a “whiff of oxygen” to get him alert enough to get up out of bed so looks like things have changed again. He has been through so much this year and yet he still has a smile for the nurses.
     
    I have just got back from the south coast – rain, rain and more rain. I took Lucas down with me so the two grandkids down south had someone else to play/fight with. Interesting watching who played with who at which game. I love them all heaps but being closed in with them over seven days of bad weather got a bit wearying.
    The weather should be warming up again but seems to have gone back to winter. The long weekend, first weekend in October, is usually one where families go camping so I felt sorry for all those under canvas. It was bad enough inside where we were dry but not as warm as usual as the heating had been turned off. At least we got another week’s wear out of our winter blankets; I had to ask for another one as the downstairs bedroom was freezing at night.
     
    The fun part of being with the grandkids is doing the holiday things, so I went with them to see the new Smurf movie, ate popcorn and had a special drink. I laughed in the right places in the movie but I am old enough to remember the last Smurf craze. Now I really wish I had kept all those figurines. We went to the church’s Teddy bears Picnic on Saturday afternoon and my team won the balloon game with a lot of laughter. It reminded me of my days as a Tupperware dealer when such games were in vogue. We also had morning tea out a couple of times and walked on the beach on a day when there were some sunny spells.
     
    I went to see Ray today and he was very sleepy. He had been in bed all day resting which of course is not good for his circulation, mobility etc. The staff assumed he needed a couple of days of bedrest after having a seizure. I’ll make sure he gets up tomorrow. I want to say to the staff: “How will this all end? What is the prognosis? Show me how I will get through all this” but I know there are questions no-one can answer. I wish I was more patient and could just accept that life has to go through certain processes and then the end comes. But it is hard to get my head around all that. I spent a year as a voluntary hospital chaplain and have seen it all before but somehow when it is your own beloved laying there you are so vulnerable.
     
    I also went to see my Mum; she was in one of the common rooms as her new room mate cries out so they keep the other three out of the room as much as possible. Dementia is such a sad disease. The room mate is also younger than I am so it touches my heart too to see her so distressed. Mum is mostly asleep now. Again I want to ask: “Is this the end now? Will she go to sleep one day and not wake up? When should I bring the family with me to see her one last time?” but those too are questions no-one can answer.
     
    The good news is that I am to be a grandmother again in the middle of next year. Trev and Edie are to have a baby and Lucas will be a “big brother”. He admires Christopher as the big brother of Naomi so the next little girl or boy will have a strong protector. I am glad this is happening now as the family needs something good to look forward to. We speak too much of death and dying.
     
    There are still many things to be done before I have fixed up the paperwork for Ray so tomorrow it is back to that. I am glad I had a break as I was getting too tired with all of the aspects of the transferring of Ray’s full-time care to others. No-one can care like a caregiver at home can but when she/he cannot do all that needs to be done the only choice is handing over the care to others and that is not easy to do.
     
    I am hoping for a few sunny days to get some spring cleaning done, air out the house and introduce some bright colours back into my life. I am so over cold, wet days.
  14. swilkinson

    Floods and kindness

    By swilkinson,

    Lots of smoke in the air for the past week so everyone was talking about the summer bushfire season and how the undergrowth is drying out – so we while we are distracting ourselves with that we get a FLOOD!
     
    I was getting ready for church yesterday when the light rain we were having suddenly turned to a downpour. No worries, we’ve had plenty of those before. Then the rainpour seemed to increase and increase until our backyard was a sheet of water and the road was a river. Then the gutters choked and into the back of the house it poured! Panic stations! Luckily Trevor was over here already as he was checking my side drains so buckets appeared and we emptied them as they filled.
     
    It was about half an hour of heavy, heavy rain and then it slowed down. This is when having a carpet cleaner helps, Trev got as much water off the floor as he could and I used heaters to dry up the rest. Carpet over concrete can dry out fairly well so not a lot of lasting damage. Our suburb was on the news last night with the highest rainfall total and pictures of road closures all around us.
     
    I spent most of the day listening to the rain falling down and praying that nothing worse would happen. Needless to say I didn’t go and see Ray as I wouldn’t have been able to get over some of the flooded areas. I read and sorted out a few things and had as restful a day as I could listening to the waters of the whole hillside pouring down past the side of my house. Woke up to the sunlight streaming in my window this morning so panic mode OFF.
     
    We have lived in this house on and off for forty plus years. We didn’t used to have the trouble with rain water we do now because it was just a house on the side of a hill. But as others built higher up, made terraces for swimming pools, build huge stockade style gardens and altered the contours of the hill, the drainage has altered dramatically.
     
    In the old days you would have just got a survey done and notified the neighbours of the alterations they needed to make. Now as we know life is far more complicated than that. So rather than face court cases I have just built bigger and deeper drains to carry the water away. As I age and am no longer as strong I need to consider moving rather than having to cope with all of this summer after summer.
     
    The rain pouring in poured over the area my computer was in so we yanked all that out of the way and dried all the equipment off but I only re-installed it this morning. I am getting so skilled at this, pity I don’t know how to fix my laptop so it goes onto the internet again with the new modem/router. I will have to leave that to Trevor to figure out while I use his old computer for Strokenet etc.
     
    I am going to be away for a few days down with my daughter. I am taking Lucas too so he can catch up with my grandchildren down south, his new cousins. I will miss both caregiver chats this coming week. Hopefully next week I will be up and running again so I can get back to you all. I really miss life in cyberspace when my computer is down. I have become addicted to knowing what is going on with all my cyberspace friends.
     
    It’s a funny thing but I think of all of you by your username, mostly I guess as I don’t know what your real name is. So Fred you are still Scooterman for me as well as my friend Fred from Fort Hood, Texas and “fking” when I see a reply to one of the posts or a comment on the blogs. What a big difference finding Strokenet in May 2005 has made to my life. I have seen so much goodness in strangers who have become friends now.
     
    I’d like once again to extend to you all my thanks for your participation here on the blogs, your good advice, your loving support and your thoughtfulness and kindness. Thank you for your PMs and the messages you send me via email and for those of you who do so your comments on my Facebook page. As our world has closed in on us due to stroke and dementia our world in cyberspace has expanded. And that is largely due to lovely friends I have made on here.
     
    I love you guys and gals.
  15. swilkinson

    More problems for Ray

    By swilkinson,

    The past week has been one of frustration on many fronts. I lost the internet for a week, partly due to my Telco who claimed it was my modem (also true) and the person who sold me the WRONG modem. Lots of days of trying to sort out the problem and the solution finally came when Trevor once again got his old computer up and functioning and here I am again on a dinosaur when I need to email, blog etc.
     
    Ray has regressed not progressed this week with the sudden appearance of spasticity in his left arm and hand. The doctor says it is the volume of brain damage now as the cell death goes further towards the brain stem than before. Small vessels disease and diabetes out of control has made the problem worse. I will work on his arm and will see if I can find a privately funded OT to work on the problem of hand and arm exercises that I can do with him.
     
    I am still sorting paperwork. This week I sent off hand-written letters to those few cousins that still keep in touch with Ray at Christmas time. I thought I would tell them now that Ray is going into care rather than have them sad when they should be happy. I wrote a few letters, had a cry, wrote some more – the reality of it all is still hard to take in.
     
    I went to dinner with friends one night last week and went to the Lions dinner this week. I am still trying to come to terms with the fact that whatever I do I do alone. It seems as if life makes no real sense at the moment. I think I am just going through the motions, doing what has to be done, waiting for that “something” that will wake me up out of what seems like a bad dream. It is like the bad strokes all over again, only this time without the homecoming to look forward to.
     
    I went to the Family support group at Mum’s facility yesterday. I go because I can catch up with the widows who go there who I know from Mum’s time in the Lodge. Only five of us this week and I was the only caregiver who has two people in care. It is good to have the old friends there but it would be better in a way if I had others who could relate to where I am right now. Even in the Dementia care group it is mainly daughters looking after parents rather than wives who look after husbands so there is no real peer group support for me.
     
    I really missed chatting on Facebook and my reading and posting on Strokenet. The phone calls help dispel some of the loneliness, reading and beading distracts but reaching out to others whether in comments on posts, chatting online or just reading what others are going through and how they are handling it is a valid way of dissipating some of the stress for me. I can tell myself : “I am not alone in this, so many people are going through something similar.”
     
    I did something yesterday that pulled me up sharp. I didn’t come home to get Lucas off the bus. I was in the middle of stressing bout Ray’s spasticity and had gone to find the nurse to discuss it with and the time slipped away. Luckily my neighbour over the road who has a child who also comes home on the bus took him to play in her yard. I usually do have him for an hour on Wednesday afternoons but my panicky brain just tossed that information in light of the more vexing one of what is happening to Ray.
     
    This made me aware of how our world shrinks down to coping with one major event when we need to be looking at the whole picture. I HAVE to get my brain into gear and clean up the house, clean out the rubbish and take some time to think about my future. I need to keep up with what is happening to Mum, her summer clothes need reviewing too and I haven’t done that yet. I need to buy summer shorts and night attire for Ray. Summer is going to come whether I have my act together or not! I need to summerize the yard too, repot plants, redesign some of the front garden area to make it a bit tidier and get on with my yard work.
     
    I didn’t think life would get busier with Ray in care, I thought it would be easier.
  16. swilkinson

    adapting continues

    By swilkinson,

    In order to get Ray to where we want him to go and not get stuck in the system we had to take a temporary placement in another facility. I have emphasized to Ray that this is only "respite" which is true as they are only charging me respite rates (daily payment). He can be there for up to three months while we wait for a placement at the facility where Mum is.
     
    It is difficult getting used to a new place. Ray is not yet used to where his (four share) room is, where the dining room is etc. As long as the staff know who he is that is not a problem. Together we are exploring the facility. I now know how to get to two different courtyards as we used one this morning and one after lunch. Spring is going though a wintery period at the moment so we were trying to find somewhere in the sun but out of the wind.
     
    Thursday was Ray's birthday so Trev, Edie, Lucas and I took some newly printed wedding photos, nice family ones in new frames and a few bits and pieces, like new after shave lotion and for a treat a strawberry thick shake. A McDonald's thick shake is the closest thing to thickened fluids we could think of. The person in charge of birthdays did beg the staff for permission to give him cake but was refused. It was a nice thought though.
     
    The staff soon realised it was his birthday and wished him happy birthday as we passed them in the halls. Seems like they are friendly and cheerful and hopefully competent too. The physiotherapist has assessed Ray and thinks he can stabilize his walking and he was clean and dressed and looking good when we got there on Thursday. A very good start for his first full day there.
     
    If he really settles I do have the option at this stage of making this his permanent home though it is 25 minutes from here and not as close as I would like to others in the family so I would prefer him closer. It will be dependent on how long before our preferred option comes available. I definitely do not want him to be pushed around from one facility to another if I can help it.
     
    After visiting Ray on Thursday Trev and family and I went to the Floral Festival, one of my favorite outings and Lucas (aged 9) drove a mini jeep and rode a horse so proclaimed it a big success. I was happy wandering among flowers and looking at nursery stalls at what is available for spring planting. The fountains and exotic garden settings and other landscape ideas will give me something to dream about.
     
    Yesterday I had a "I don't want to go anywhere" day so I decided I would do some housework. I didn't do a lot. I had a few phone calls to make and that seemed to take a lot of time. And really this moving Ray, motivating Ray, accompanying Ray as he learns his way through the facility is almost as tiring as caregiving so I am feeling the effects of that too.
     
    I spent an hour in west coast chat talking to Sarah (hostsarah) and as usual there was only the two of us. Come on west coast caregivers, come to chat and share your story with other caregivers. It is wonderful how much better you feel when you realise others are going through the same thing and are willing to share their experiences with you and be there for you. And this time slot is designed especially for those who can chat at 8pm PST, or 11pm if you are on the east coast. I know some of you are still up then.
     
    Late in the afternoon a friend visited and was on the way to the shops so did I want to come? Not really, but I am taking whatever is offered as I want to start a new life and to do that I have to reconnect with friends. We did her two or three stops and then had coffee. It was nice sitting and talking without having to worry about the time or who was looking after Ray and did they need me for anything?
     
    I am not out of the woods yet, plenty of paperwork to do, items to return to people who have lent them to me, thank you notes to write to people who have been involved in our lives during the caring period. I have to cancel or reschedule some appointments, make arrangements for Ray to have his hair cut, see if I can buy a small television set and something to play DVDs on. I would like to get taxi vouchers set up for the wheelchair taxi so we can in the future maybe have a meal out.
     
    Today I did a split visit, 10.30am till lunchtime about noon, then went off and found somewhere to have a meal (not as nice as I expected) then back for a second hour of visiting. I met a few more staff members and filled in some more paperwork for one of the nurses. There is a lot of that even with respite. I took some crocheting this time. One of the nurses asked if it was a "worry blanket" as her daughter had a hard pregnancy and had to put her feet up a lot so her mother-in-law taught her to crochet to stop her worrying.
     
    Tomorrow I will go to church and then out to visit Ray and have lunch there for the first time. The aide I booked in with said Sunday is a good choice as it is a roast dinner. At least Ray will see what his dinner looked like before they chopped and minced it.
  17. swilkinson

    a tough decision

    By swilkinson,

    The past few weeks since Ray has been back in hospital have been awful. It seemed as if each day I got some new bad news. This is wrong with Ray, that is wrong with Ray, his behaviour is worse, he is having hypos through the night, he seized one of the nurses by the arm and wouldn't let her go.
     
    I can only take so much bad news in. In the end I wanted to say: "So deal with it!" Instead I took on the guilt of a mother with a child who is misbehaving at school. In the social worker's interview this week she remarked how much I had changed in the past six weeks. I guess the stress of it all has just ground me down. And that is why I knew that they are right and I will not be able to manage all of Ray's care needs now and he will have to go into full time care.
     
    The interview on Monday was the most shattering as the social worker who likes to "tell it like it is" was fairly brutal in her assessment of Ray's mental capacity now. I wouldn't say she exaggerated but she did describe the bad days as if that is all there ever is or will be. I was devastated and cried and cried. I was alone as I had not expected to have that particular interview right away, Ray only having got back there on the Friday.
     
    The past few days have been like walking though a fog. The road is familiar and you know if the fog would lift you would still see the landmarks but while the fog is there landmarks are invisible.
     
    Our daughter came up by train and arrived at 8.45pm on Tuesday night. I was so glad to see her as I thought it would take a lot of the strain off Trevor and Edie. She and Trevor sat in on the interview on Thursday morning and because they had been forewarned by what I had told them about the interview on Monday they did both have tears running down their cheeks but agreed that they did want me to survive this and placed care was our only choice. If they had decided the other way I would have gone along with that but I know the amount of support I would have needed was beyond reason.
     
    We then went together to look at a couple of nursing homes in the complex close to where I shop and behind where Mum is right now. The accommodation at one is like large rabbit hutches, each resident in a slice of a room with a shared bathroom, another had four beds in what is obviously a large room designed to take three beds. Another was okay, full of light, cheerful staff but the "extras" would take a lot of my money as well as Ray's to pay for, don't know how much I would have left to live on.
     
    Now we have to wait and see what I can work out from our financial point of view, what is available and then make the decision. Of course there will be pressure for me to get on and make the decision as the hospital needs to "free up" the bed. And it is my decision. I cannot get Ray into the nursing home where Mum is as that is a three phase system, self-care ->hostel care -> nursing home so they always have a long, long waiting list. One of the others will have to do.
     
    Will Ray's conditions improve? Some people do really well in assisted-living nursing homes. They love the fellowship, the fuss the staff make of them, the courtyard and the activities - whatever angst they have had they leave behind at home or in the hospital. Others grieve and pine and don't do well at all. Only time will tell what is to happen to Ray.
     
    As for me, I will grieve and hopefully one day come back to whatever is a "new normal" for ex-caregivers.
  18. swilkinson
    This weekend was a turning point in a way. On Fathers Day Ray had a visit from three people, Trev, Lucas and myself. We all came in the one car. As a present we brought Ray a thick shake which he was able to drink with some minor coughing and that was our celebration. We bought Lucas a kids meal and he ate that while Ray ate his lunch so I guess you could say we had a meal together. No big backyard barbecue, no family gathering, no little ones running around or bringing gifts for "dear Pa".
     
    Trev, Edie, Lucas and I went to Hog's Breath cafe at night and celebrated Trev's first official Fathers Day. Shirley had been here Tuesday to Friday that week so I guess she thought that was enough and Steve and family didn't bother to get in touch at all, so I guess that branch of the family don't know how to cope or considers the relationship over now. How very sad if Ray is no longer considered Steve's Dad.
     
    This week the Aged Care Assessment Team (part of the Department of Health) will ring me with care homes they think are suitable to meet Ray's needs. Unless you are self-funding you don't look for your own nursing home. We will have a contributing amount to pay based on our income and assets as we are unable to pay the full amount needed. Until that is organised we pay a higher daily rate. Just as well we saved for a rainy day because those storm clouds are rolling in. We will also pay for his medications and in most nursing homes other extras such as haircuts and podiatry, clothing labels, pharmacy goods and a whole lot of other things we take for granted in our own home environment.
     
    I am not doing all this as stoically as I'd like. Mostly I can speak to people without crying but answer either flippantly or with tears when the serious subject of placement comes up. I don't want to do it but have to as even with Trev's help I cannot do around-the-clock two person assist care. It is the end of one journey and the beginning of another for Ray and I. I will no longer be the hands-on caregiver. I will still be a wife and life partner and carer, I will still be the good friend if that is all there is to be. I will just not have control of his care any more.
     
    It is hard for me as a caregiver of twelve years to do this. Twelve years ago, on 3rd September 1999 with fear and trembling and wondering how I would ever cope, I brought Ray back home from Woy Woy Rehabilitation Unit. He had had the two major strokes in Bendigo, one on 19th April, another on the 10th of May and had so many things happen to him arising from that that it took six weeks there and another three months at Woy Woy to recover enough to come home. Then he had in-home rehab, OT, PT and speech therapy for the next twelve months - a long recovery but a successful one.
     
    This time he has had 13 weeks in hospital and "slow rehab" and is really worse now than when he went in. I think this is because he has had maybe a slight heart attack as the man in the next bed a week after he went back into hospital on 9th August after the failed discharge talked about the fuss during the night when "they worked on him" so I would say that was either a seizure or a heart attack. No report to me about it so I'll never know.
     
    Tomorrow I need to look at two more nursing homes with a view to placing him for respite and later into permanent care if my first two choices of care homes do not become available. It is a long process and I doubt I will be over it for a while yet. Financially it will mean we will use our savings, Ray's retirement fund and possibly some of mine so that is hard too. But whatever will be will be. I am glad I have been frugal and had the money put by to do it.
     
    So mentally right now I am a mess. I never thought I would get to this point. I had hoped that Ray would be with me for the years ahead and one day, an old, old man, would succumb to death as we all do. It feels like failure, it feels like retribution, it feels like the death of a relationship. I know that is "over the top" but that is how it feels. And some of you, having been in this position or knowing you will one day be in this position know that too.
     
    I want to thank you all for your prayers. I know we all prayed that Ray would be able to come home here again but honestly I know now that that is not to be. I just want to find him somewhere safe to live out his days, somewhere I can feel safe visiting him and hopefully somewhere the family will visit him also. At the moment I am not really hopeful of that.
     
    Please continue to pray for us both, for courage and resolution for me and understanding of the situation for him and a good outcome for us both.
  19. swilkinson
    I keep saying this idea of bringing Ray back home is do-able but now not so do-able as I'd hoped.
     
    I just went into Gosford Hospital for what was supposed to be an evaluation interview. Only the doctor turned up to it in the social workers office. I took Edie with me as my back-up as Trev has a really nasty dose of flu so we told him "bedrest and warm drinks" and left him at home.
     
    The doctor was a young Asian woman and really explained Ray's conditions well. Unfortunately he now has two new diagnoses pertaining to the heart, Atrial Fibrillation and Atrial Flutter and he is on warfarin for that. He also has hypos at night so his diabetes is now considered unstable. He still needs two person assist for walking and is now getting weaker rather than stronger.
     
    I wanted to ask if there was any good news.
     
    Apart from that the plan is still to bring him home, he can die here cheaper than at hospital. But with all of this he still has his pink cheeks and his blue eyes and looks well...
     
    The social worker is really trying to get a plan into place for me. She said when he is transferred back to XXX hospital for his continued slow stream rehab she will send a set plan with him and they will have to stick to that. Excuse me being cynical but she does expect a lot...sweet little thing that she is, fresh out of her training and so sure of her view of the world. She must have caught my look because she said; "I know all this sounds a little Pollyanna...". Isn't it a shame we can't get all the help we so desperately need?
     
    Edie asked a couple of sensible questions, she will report all she heard back to Trevor so he is in the loop too. We went back and sat next to Ray in the hope that the OT would meet up with us there but she didn't show up. They are understaffed and I guess she might have been covering for someone else.
     
    Ray was obviously sat down in his chair to wait for us and was busy falling asleep. I prodded and poked him to keep him awake. Eddie laughed when I laid my hand on his arm and he jumped. He looked very tired. I did re-iterate what we had been told in simple terms but assured him he would be coming home again. I think in the end that is our only plan. I have also been told there will be a falls prevention program for us as well. This should include some instructions on lifting, maybe the suggestion I hire a lifter and some ideas on how to use the furniture to get him up. I did one years ago but a refresher would be welcome.
     
    In the interview we also touched on getting the diabetic educator back in the picture and some more in-home physiotherapy. Of course the staff in the other hospital will have to sign off on that too.At this stage I will take any help I can get, this is the only way I will manage. The saying :"many hands make light work" comes to mind.
  20. swilkinson

    ripples

    By swilkinson,

    In our lives we talk to many people. Some responses are very trivial, like exchanging words with strangers, some are very deep and meaningful like sharing with a loved one the thoughts from the deep recesses of our heart. It is a sharing that is precious, meaningful and RARE.
     
    Part of the problem with our modern life is that we now share with everyone some of the deep meaningful messages when we should instead be sharing the words of exchange. I am thinking of Facebook here of course. I put up my status, "Ray is still in hospital, no progress for a week". All the people on my friend list see it. Then some comment and all the people on their friend list see it. The ones who are curious then click on my name to see who Sue is and who Ray is. That means a lot of strangers are reading about me.
     
    Recently I was aware that this is happening with my Strokenet connections too. A cousin emailed me about a blog I had written. She had put information I had given her together, figured out I was "hostsue" on Strokenet and found my blog. Okay it is public as I want people to benefit from it, so it is not an invasion of privacy or anything like that. I was just surprised and aware once more that we have a lot of witnesses to our lives that we are not aware of, more so since the coming of Facebook and Twitter. So we have to factor that into our communications.
     
    I have had some problems with the hospital staff. I had a loud difference of opinion (okay, argument) with the social worker at the smaller hospital Ray was in before this readmission. Some of the argument has been passed down from various witnesses, mainly nurses and therapists, to the present ones. This is leading to a lot of conflicting information circulating. For instance one of the social workers said: "I believe you said Ray will never go to XXX hospital again?" No, I did not say that. One of the participants in the arguments did say she hoped she would never see us back again, but the social worker would have to go back to her and ask what she meant by that remark.
     
    Words have the same impact as stones thrown into a pond, you throw a stone, you get the impact point plus ripples. So now I am experiencing the ripples of a past argument and no doubt being judged on that basis. I am no longer that nice carer I am something of a "dragon lady" now. This in turn will impact on the decisions made about Ray and on his behalf. That was something I certainly didn't think of at the time when I was loudly voicing my opinion.
     
    As you can see on the previous blogs this hospitalization has really impacted on me. I think the continuing strokes challenge my trust in myself as a caregiver and my trust in the medical profession as a whole. It certainly has challenged my concept of the hospital as a place that provides appropriate care. Maybe my past encounters with the system were the exception not the rule as I thought he had excellent care and the concern was on him getting better, getting stronger and getting home. He was always stable before he was sent home and I had no hesitation in taking him back home.
     
    In these times of unpleasant economic realities underspending is encouraged because of budget restrictions due to world recession etc etc. This time there doesn't seem to be an emphasis on care and rehabilitation for someone like Ray but care, comfort and early discharge, either into a facility or back home again. This is a problem as quick and easy solution Ray is not. And slow rehab, which is what he needs, is too costly. So chances are he will be discharged early again, an economic necessity. I am hoping I am up to that challenge.
     
    I need always now to be mindful that unseen witnesses are recording some of what I do. Without being self-focused and paranoid we all need to be aware of this.
     
    I remember in my girlhood an old ,old friend showed me a sampler she has made as a girl in Victorian times. It said:
     
    "Be careful of the words you say.
    Make sure they're soft and sweet.
    You never know from day to day,
    Which words you'll have to eat."
     
    Author unknown.
  21. swilkinson
    I decided to see Mum this morning before I visited Ray and I was so glad I did as she was in a delightful mood, all smiles and beating time to music. They have a radio in her shared room now and she was bopping away to the song "Wild,Wild West" half laying in her chair, her hands and feet beating in time. I so well remember her singing and dancing around her kitchen to a favorite song on the radio so it was like dipping into the past when she was young and happy and lively.
     
    The sun was out today and it is showing faint signs of spring so on another visit soon I might be able to take her out into the garden again. I do that every few visits if it isn’t too hot, too cold or blowing a gale. I am sure being out in the fresh air does her good. She always loved her garden so maybe the sight or smell of flowers is one she remembers too. Old memories don’t die with the brain cells, they just get harder to access.
     
    The visit to Ray went well too as he did do some of the chair exercises the new physiotherapist showed him yesterday with me cheering him on so that was a positive for a change. The downside is they have tonight transferred him back to the ward with only dementia patients where the attention goes to the more bothersome patients and quiet ones like Ray get little or no attention.
     
    At Lions tonight I paid both of our six monthly dues and put Ray down as on indefinite leave due to illness. I don’t know if and when he will go to dinners again. With the thickened fluids and specialized diet it is very difficult to go to a normal dinner. I know we did it for eight months three years ago but he didn’t have as many other problems then and certainly not the incontinence at the level it is now.
     
    I rang Ray’s sister tonight for her birthday, as she was 61 today. She was Ray’s favourite of his two sisters and he did actually mention some days ago that Jude’s birthday was soon though he couldn’t remember the day. She used to come and see him once a year, which is once more than the others. For someone like Ray I am not sure celebration days are important, for him as for Mum the days just flow one after another and I am not sure he remembers much about them. The combination of stroke damage and dementia has taken such a heavy toll.
     
    I went down to one of the local beaches today, didn’t walk on the sand but watched the waves roll in for a while. I actually went down to look at the progress of the new Surf Clubhouse as that is where Lions future meetings will be once it is opened at the end of October. The hold-up apparently is the road works, new driveways etc being held up by the wet weather. Since the old one was demolished our Club has been wandering from venue to venue. I like Lions dinners so hope that once Ray is back home I can still go.
     
    I am getting impatient now for Ray to be ready to come home again. I think it is because life seems to be on hold. I can’t make any plans, I can’t decide what to do about certain issues. I need to leave our money available for nursing home fees etc if Ray does have to go into one. Which means curtailed spending on other things.
     
    I do need a lot of new curtains, blinds etc for summer. It is easy to neglect maintaining your home when you have far weightier matters to think of – in our case Ray’s health issues. But of late I have made some changes while many more are waiting to be addressed.
     
    Trevor is cleaning out our garage, or attempting to. Ray was a real bower bird (so am I come to that), which means we saved so much for a rainy day that now needs to be cleared out and thrown out or given away. It is a huge task and really we are just nibbling at the edges of the problem.
     
    I have one of our favourite couples coming for the weekend. John will bring a chainsaw and some of the saplings that have sprung up along our boundary will “get the chop”. He is a painter, gardener and handyman and incidentally Trev’s godfather also so he and Trev will have fun sorting through yet more of our “treasures” I’m sure. I do need to have a clean-up before they get here so better dedicate Thursday to that.
     
    It has been a better week this week so far. I hope the light at the end of the tunnel will soon be switched back on again.
  22. swilkinson
    We are back in a holding pattern again. Ray is happy enough lying in bed in a surgical ward in our major hospital. He gets food and his bed changed and a little attention from the nurses. I don’t think he likes it as much as the little hospital locally as there is no-one wheeling him out into the courtyard to get some sun on his feet, no-one bringing him magazines to keep him amused. The little hospital is more in nursing home mode as most people are waiting to go on to the nursing home and where he is now is a proper hospital set up for acute care so there is a big difference.
     
    I feel such a failure at bringing Ray home. He was signed off as able to do the walking and the standing needed for a shower etc but only took a few steps here. I showered him by myself on Thursday a week ago using a shower chair and the high arm walker. I took him to the wedding on Saturday in the wheelchair and he was okay.
     
    The day after the wedding the staff said he was tired so he stayed in bed on Sunday. I learned to change him etc on Sunday afternoon. He was fine on Monday and seemed to be okay with coming home on Tuesday. But then on Tuesday here at home on the second transfer to the bathroom he slumped, bent at the knees and could not stand back up again – a mobility breakdown. I had him resting on my knees and managed to lower him to the ground, which saved him from falling. You can do that kind of thing once, not over and over. In the end I did call the ambulance, what else can you do?
     
    I wish I knew how he could build his strength and stamina back up. The therapy staffs at both hospitals only walk their patients once a day, in the morning while they are fresh. There is no way a wife can walk a patient because of the health and safety issues. So although I would like him walked more often there is no way that can be done.
     
    One of the ambulance officers said that for some long term patients hospital seems safe and when the patient leaves they have some anxiety and have another turn of some kind. Maybe that is what happened to Ray, he simply lost his confidence with being home. I am not sure how I can address that issue except that Trev said he will stay here for 24 hours next time and give Ray a kind of settling in period.
     
    I think two out of three of my children now think Ray should be in a care facility. It is their concern for me that makes them see life that way. I know I am so good at telling others to look after themselves and here I am saying that I would sacrifice everything for Ray to stay in his home a little longer. It is such a big emotional issue “putting your loved on into care”. The theory is good but the actual doing it is very hard.
     
    I had to put Mum into care to give Ray the attention he needed after stroke number four in 2001 and now I am facing putting him into care because he is too needy for one person to look after. It is such a hard thing to do. One thing I have been doing is looking at lifting aides as I thought maybe without having to walk to the bathroom etc I would be able to manage Ray at home. It is fairly exacting work though picking someone up and moving them through the house on a hoyer lifter or some such. I can use the wheelchair without a problem but he has to be able to stand for a few minutes.
     
    Unless he gets stronger I really can't do this any more so if he can't relearn to stand and to walk confidently I will have to find him a nursing home placement. How sad would that be. I know every day people are making that decision, it is just one I hoped I would never have to make.
     
    Of course Ray has been severely disabled for some time now. I guess I just fail to see him as he really is. Not surprising as we have been married for 43 years and to me he will always be the blue eyed boy who could waltz me round the floor effortlessly, smiling and talking in that smooth way. Now we are both passing from middle age into old age and neither of us spry or supple anymore. One of the physiotherapists told me I need to go home and think about looking after my own needs for a while. As I’ve been a caregiver for the past twelve years that is a hard call.
     
    Even if I decide I can bring Ray home for a while I know he will not be able to help a lot with his own care so I think our time together is limited. Hopefully we will still have some good times though. If I can get some reliable care into place it will look easier to handle.
  23. swilkinson
    The wedding went well. The last people to get there were Ray and I as when I arrived to pick him up at the hospital he was still getting shaved. The bride’s limousine went round the block a couple of extra times and we were seated by the time she arrived. The whole day went well from then on.
     
    There had been a lot of things happening the week before and I think we barely got through it all. All weddings have glitches but luckily they all happened before the ceremony so that was fine. The bad storms predicted for the day never eventuated and although there is thunder now as Sunday draws to a close Saturday was fine and sunny with just a little light cloud.
     
    Shirley and family came late Friday afternoon and as Edie and Lucas had gone to her mother's we took Trevor out to dinner. It was a good move as he had been panicking all week and that day was no exception. Craig got alongside him in an understanding way and soon he was fine. It was a nice seafood buffet meal at one of our favourite restaurants so I ate my weight in seafood – I think I was a little tense too and having a night out helped to ease the tension for all of us.
     
    First stop for me on Saturday was the hairdressers and some of you have seen the fancy hairdo on Facebook. Nothing feels as great as a “new do” and finally getting into that nice outfit that fits and looks great on. A quick cup of coffee and then it was off to pick up Ray. The nurses had him ready (except for the shave) and we were off. Unfortunately the traffic was very uncooperative and while it had taken us 25 minutes to get to the rehearsal it took us 40 minutes to get to the wedding itself.
     
    There were about 80 people including lots of children at the wedding. Our daughter Shirley, who as a Salvation Army Captain is a minister of religion and therefore a licensed marriage celebrant, performed the ceremony. She was the first to cry and brought a chuckle to the congregation when she said: “You’d think I’d be used to this by now.” But it is not every day you get to marry a family member. Most people were impressed by the service and clapped in the right places.
     
    Afterwards we had photos taken in the courtyard and round various spots and we are getting a disc of them as a wedding thank you. In the meantime you can see a few at:
    http://www.facebook.com/media/set/?set=a.155946367816955.38005.109677512443841
    as you can see Ray is in the wheelchair and looks good in the suit.
     
    The family lunch went well. With nine children present there were some tears and tantrums but Ray was able to eat an omelet and some ice-cream for dessert and I had brought thickened drinks with me so he was fine. Won’t go into the BM difficulties but all in all a very successful day out, his first day out of the hospital since 13th June.
     
    Today he was still in bed at 11am with no intention of getting out at all. He deserves a rest. I did remind him thought that that kind of thing does NOT happen once he is at home.
     
    The nurses and nurses aides have been great the past week or so. Every day someone has come along with some handy hints for when he comes home. One of the cleaners told me the best place to buy continence aids. I think once they realised I was definitely going to bring Ray home they were then willing to share what they thought I needed to know. It is a pity people leave it so long to do that. I could have done with that advice earlier on.
     
    Now Tuesday is the deadline for Ray coming home. I still have not finalized the arrangements for his care as I disputed the first lot of arrangements and I am hoping that all falls into place early next week.
     
    In the meantime I just pray that I have the strength to look after Ray in the way he needs and deserves
  24. swilkinson
    I had one of those strange days today where nothing went as planned. I had to try the suit I had for Ray to wear to the wedding on him and thought that would just take half an hour or so. I had other plans for the rest of the day.
     
    As soon as I took the suit jacket in I realized that it was not big enough for Ray. During his long hospital stay he has lost so much muscle and he now has a really round mid-section, adding about 10cms to his waist. He also has two frozen shoulders not one, as a result of one of the falls, so is unable to move his right arm in a full arc. He is also hunched over as he has been sitting bent over doing his puzzles. He seems to have forgotten how to sit up tall like a man usually does.
     
    The suit didn’t fit and I had nothing at home bigger so I had to buy a second hand suit from our church's Op Shop several sizes bigger than he used to wear. This one is broad enough across the shoulders and fits over his tummy. It will hang open a bit but I can’t fix that. It is nothing like I wanted for him but as he is sitting in a wheelchair I doubt anyone will realize that it is a compromise.
     
    Edie's sister came to the hospital and gave him a haircut. It is very modern (she mostly does kid’s haircuts) and he certainly looks different but tidier which is what was needed. While we were there Trev and I did some maneuvering around with him and Trev says he needs to go back to weight lifting as his Dad is much harder to lift now. I think we can work on that when Ray comes home as we will have more time with him than the therapists do.
     
    I missed my ladies lunch today but managed to get there two hours late just before everyone left so I did get to talk to some of them. I also missed my visit to Mum this morning so will try for that tomorrow. I find I am so tired and the less I do the more tired I get. It is dealing with the emotions of all this, the losses Ray and I have experienced through this last stroke and grieving once more for the life that has gone. I’ve had a couple of crying spells the past few days and some nightmares too. I am hoping that is just the strain of it all.
     
    The wedding plans are taking up a lot of all our times. I don’t have a lot to do with it but am a sounding board for Trevor who is getting overload from watching Edie being so focused on it. I admire her for what she is doing. Her Mum is not a well woman so the planning, ordering etc is all Edie’s to do. I just hope the weather is as good as it has been the past few days so they have a glorious morning for the service and are able to get a lot of lovely photos. I am grieving because I cannot do as much for them as I did for the other two.
     
    Trev and I need to get a move on cleaning up the shed up the back so we can store furniture in it. If he and Edie are to move in here we will be merging two households and that is not going to be easy. I am a confessed packrat so I have kept so many soppy sentimental things and all those bits and pieces that will come in handy …one day…and that is going to take some sorting through. I make an attempt at it some days but never seem to get far.
     
    Ray’s discharge has come back a day and is now next Monday (8th August). I hope the therapists’ work on his standing, getting in and out of bed etc as we see that as an area which could do with a lot more attention. I go on praying for the strength to take up the task once more.
     
    I have just posted a reply on a thread recommending that the writer break a mass of problems down into some she can list and thereby make the problems either manageable or solvable and that is what I am trying to do myself. I wish I had a partner I could work with as I did in the early days or our marriage but I don’t. I now have to use my own judgment and if things go wrong take responsibility for that. It is not easy to do.
     
    If love works miracles I should be due one any time now.
     
    Sue.
  25. swilkinson

    planning ahead

    By swilkinson,

    Ray was not accepted for the Transitional Care Unit as his progress is "too inconsistent" - well folks he has brain damage!!!. I guess it was an outside chance and I was willing to do it to get him home with more abilities. I know there is only so much money to put into these things and so they only take the "winners", those who will benefit most from the more intense physiotherapy etc. I am just sad that this time that was not Ray.
     
    So I have had a couple of interviews with the social worker, members of the team who have been looking after him and now discharge planning starts. I am disappointed with what has happened but Ray is and always has been since the 1999 strokes down as "unmotivated" so I wasn't surprised with the result. It is a "move it or lose it" world.
     
    I now have to acquire any new skills I need and the equipment to bring him home. I am promised more care but will see what the reality of that turns out to be. I am not happy with what has happened but as the care itself has been good and as it IS Ray's attitude that is the stumbling block here I guess I will have to accept the "things I cannot change”.
     
    I hate the "being in limbo" feeling. I visit every day for at least a couple of hours around noon, I still visit Mum, do the housework and the laundry, pay the bills, make phone calls and send emails to keep people updated. The days tend to have a sameness about them so sometimes I don’t know what day it is but even Ray remembered that today was our wedding anniversary (43 years!!!) so that was really nice. We have also had congratulations from some of the other patients (the sun room mob) and some staff members.
     
    I know some of my family consider this respite as I haven't had to do all the extra laundry etc that having Ray at home entails but for me respite is a time when I can get away and do my own thing and believe me this is nothing like that! We have had weeks of heavy rain so that has hampered the visiting and I have been his only visitor for many days in a row. Even Trevor hasn’t visited.
     
    Change is always a challenge for me and so I hark back to the days when…Ray could walk, wasn’t incontinent, did listen and respond and wasn’t 24 hour care. The older nurse who came by today with a whole heap of notes on incontinence aids and the one who came to help me establish where Ray is as far as night-time incontinence is concerned are both a blessing, representing that body of nurses who really were there to help you cope with what lies ahead as well as look after your loved one in their care.
     
    The good news is I may be entitled to some extras, like discounts off the pads I’ll need for Ray, deductions in the hiring of equipment and maybe some laundering if I need it. This is another disability scheme I can enroll in and one of the nurses is finding out about it for me. I will also enquire through our local pharmacy as they have another shop with a large equipment section so they might do discounting too. You have to save wherever you can and make one dollar go where two dollars would otherwise have to be spent. My Scottish ancestors would be so proud of me!
     
    I keep on going because I have some family support, a few of my old friends still keep up with us though there are many others who have fallen away. My faith and church friends who have me on their prayer list also give me confidence and my cyber friends here who also show love and concern and send up prayers for me do too It means such a lot to me, particularly on those bad black and blue mood days.
     
    So looking ahead, Ray comes home Monday 1st August and hopefully care team members start coming to provide the services he needs. At the end of that week is the wedding, on Saturday August 6th – I guess a big let-down comes right after that. Then a month more of winter and then Spring!!!!