swilkinson

Living without pretense is hard but it is freeing to be just who you are. Must confess to putting a sugar coating on sometimes though. Another thoughtful blog Asha. Sue.

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.

MaryJo, from my perspective Ray was always self-centered, marriage and family changed that a little as I expected him to look out for us too but the first stroke changed him back to "Me - No.1" and that was 21 years ago! I always think that journey into self that happens when you body breaks down, that is essentially part of survival skills, kind of lingers on. This makes the relationship unequal, me caring for Ray but Ray not really caring about me. Somewhere along the line I stopped expecting that it would reverse. Maybe with us caring so much we expect a greater love returned? A wise man told me that while marriage should be 50/50 it is often 20/80 and still manages to survive. (((hugs))) from Sue.

Do what you have done for Thanksgiving and the Christmas season for as long as you can do it. Do you remember the expression "fake it till you make it"? That is what all we caregivers do. We burn so bright sometimes in our "make it a happy Christmas" zeal that we burn brighter than the candles. We all want our old lives back some of the time, the rest of the time we do what we can with what we've got. (((hugs))) from Sue.

I agree with Debbie, keep it simple and continue to count your blessings. We don't do "Thanksgiving" in Australia, having a different history, but I will make a gratitude list too. Change is what we can expect, the seasons change, the crowd moves on, people find different things to do but the loving support on Strokenet will always be here in one form or another, that never changes. I'm sending ((((hugs))) to those left to count their blessings in your wonderful family. Sue.

Sounds like love found you again Bill. I hope this lass will turn out to be good for you, and you for her. Old Bud turned 10? Wow, no longer the pup, just a fine old fellow and your faithful companion. Give him a hug from all his admirers here. (((hugs))) to Bud from Sue.

Welcome to our blog communty. The joining fee is stroke, a high price to pay but you now have entry into a whole new world of supportive friends. You say kids so I guess a young family, and your man struck down by stroke. At the moment it is a tough time for you all. It will get better, he'll have PT and OT and some medical help to stabilise his conditions. And he hopefully will start to feel better, more able to take part in his own recovery. If you can find something he likes to do, work on him getting that back, give him hope and something to look forward to. With all the therapy,helping with the exercises, TLC from family and friends, gradually you will see the changes happening. You have to hang in there at his side, take care of the kids and take care of yourself too. Especially take care of yourself as you are the pivotal figure now. Keep blogging and we will support you all we can. Sue.

Debbie, it is a good example that reinforcement works. Ray had a tissue fetish, they were everywhere, in his pockets, beside him on his table, under the chair cushion, under the pillow, under the bed. I tried over and over to convince him - you use them and bin them. Sometimes it worked for a while and sometimes he lost the message and I had to start reinforcing it again. In a long term partnership some things grate more than others, but if we are people of good will and really do love each other somehow it all works out. And as you say - slowly, over time, things change. Sue.

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.”

Fun and excitement, fear and anxiety, all surround our biggest events, weddings, funerals, holidays and moving days. You are stepping outside your comfort zone, meeting people who are new to you since the stroke event and may "judge" you. That is frightening or exciting, whichever way you want to look at it. Life after work needs to be planned. If you were going to die in a year's time what kind of things would you want built into your life now? What kind of lasting memories would you want to make? How could you use your present time to move toward that? Life is a gift. 24 hours at a time. And personally I don't like to waste it. I am adjusting to life with Ray seperated from me by his illness but still needing my time. So my roiutine is up, breakfast, housework, computer, morning tea, off to see Ray, home three hours later, lunch, afternoon tasks, dinner, after dinner tasks (mainly recreational including computer) and bed. Still a full day to use and enjoy. Use your time well, do some exercises both physical and mental, do what you can to contribute to the household, enjoy some recreational activities. You need to include time for Monster training etc. You have been given a second chance at life so make the most of it. Your Mom is right, you are stressing, relax as much as you can, prepare to learn to love and be loved in this new part of your family. May you be at peace as this exciting new adventure unfolds. Sue.

Keep on walking Fred, one step at a time. I hope you ARE dancing by the time of your wife's Christmas party - that would be great! I've been amazed that you have improved so much recently. You have been a long time on this journey. There are always new breakthroughs being made in medicine and therapies so one day you might be even better than where you are now. Keep hope alive! Sue.

Kids are funny with balloons, I used to love my Sunday School class enjoying them. Good to see Elondie blogging again as she helps with Tootie (her granddaughter) and you deal with Cayden you should have a lot in common. Sue.

MC, I will pray too. You so deserve the happiest Christmas this year. I know there will be moments of sadness but we all have those as we get older. We can have so many mixed emotions in the season that should represent peace, love and joy. (((hugs))) from Sue.

Lenny, you are a sportsman at heart, I can tell by the way you want to move forward, step up the distance, improve your times. I wish you luck in returning to marathons. Some of the memebers of our stroke support group go to Sydney for one of the longer competative walks and just try to beat their own best time each year. Each one who finishes is a winner anyway as we all know here. Good for you. Sue.

Sure is good news - congratulations to Bruce - wonderful effort. You put me to shame Debbie, I am just starting to realise Christmas will be here whether I am ready or not. Maybe I can borrow Bruce for a few days to go over the shopping list with me.... Sue.

MaryJo, welcome back, we've missed you. I am glad you were able to bring Dan home, I wish I was able to do that but with Ray's new complications that is not going to be possible. The health care worker Jeff sounds great, I hope he is as good as the Jeff we had, he was a perfect fit for Ray. I can understand your pleasure in being home alone, it is what I missed most when Ray was here, now it is not the thrill it was back then...lol. If you are around for chat we would love to catch up with you. Sue.

Lenny, thank you for bringing these books to everyone's attention. We all need to do some reading to find out how to help ourselves or our survivor. And we appreciate those who give us some idea of what to read. Thanks. Sue.

I'm with Asha on this, I think the more parties he goes to the more he will understand and get into the action. Blessed be those who see beyond Cayden's disabilities to the fine person he is. Sue.

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.

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.

Yep, the only way to get this out of your mind is to go on proving him wrong. Nice to see you on blogging again. Welcome back. Sue.

Debbie, I agree, working in the yard is therapy to me too. But mine is tending pots, growing herbs, splitting the bromiliads so I can give some away. That is spring, then summer comes and burns them all to a crisp if I don't go out early morning and water them. Reading about your poker playing days was interesting. I don't gamble at all, that was my Mum's way of seeking thrills though. Our son tried Texas Hold'em but the personalities of the players convinced him it was not the company he wanted to be in, which was probably good for his budget...lol. Enjoy your cool sunny weather. Sue.

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.

Those bills keep on rolling in and we do that hard task of making decisions we are uncertain about and our partners were so good at making. We begin to shake at the knees and our confidence goes back to ground level again. Yes, been there, done that and the world did not stop and wait for me to catch up. Chin up dear heart, you will get through all of this one step at a time. Just keep on doing what you have to do and that list will shrink back to a size you can handle. Anyone at the mechanics shop who can bring the car back to you maybe? There's got to be a late teen somewhere that can help. Without breaking yur heart could I suggest you look at what Mary Beth said and work out how you could tackle the situation as she sees it? Remember the four colour beach ball test? You only see the colors facing you, not those facing the other person. (((hugs))) from Sue.

George, you are so right but as a caregiver I would say here it is not just about motivation but about support. You supported Mike through some pretty dark days. Now he has a ladyfriend and she supports him so you can back off for a while but keep that friendship going, he still needs his buddies too. We all need people who love us as we are and are lucky if we have them. Regards to Lesley too. I loved your blogs, your determination was such a contrast to the "let it all go" attitude of my dear Ray. But Ray is still going 12 1/2 years from the 1999 stroke, 21 years since his first so we must have done something right I guess. Sue.