swilkinson

Today it is raining, not the rain of summer with thunder and lightning and spectacle, but the quiet , gently falling rain that tells me the seasons are changing and autumn (fall) is here. There is no dramatic changing of leaves or other signs to tell us, just gradually falling temperatures, shrinking daylight hours and the lessening warmth of sunlight. Daylight saving ends next Sunday and that will mean earlier evening mealtimes as the days draw in rapidly. It is a time for packing summer clothes away, reviewing what will stay and last another season and what will go to the charity shops or the rag bag. I've been looking for something to do with this time when I will have to stick close to Ray for a while. Previously I could at least go for a walk while he slept or visit a friend down the road, or walk down two streets to post a letter while he is having an afternoon nap. Now because of his fragility I am not going to leave him on his own . So I need a new hobby to keep me from going mad imagining I am confined by this new state of affairs. Sure I have here to escape to but I need other hobbies too to keep me interested in life while inside the house. So with that in mind I am sorting through heaps of boxes of junk in search of all those photos I've been meaning to put into order and haven't. And that has released a treasure trove of memories. I wish I was one of those people who could say:" This is when we were in Queensland in 1989, we met those people Mum and Dad knew, who lived in the corner house and had tea with them in that converted boathouse by the river." My Dad would have been able to do that. He remembered everything he ever did, most of the people he ever met and a lot of the conversations he had had almost as if they had just happened. I have the kind of mind that recalls something if my memory is jogged as I did just then when I remembered we did meet old neighbours on a holiday in Queensland. So I have decided I will give them a rough sort and see if I can connect memories to them. All those trips on holidays in various beauty spots must contain some happy memories. We often used our holidays to visit friends, catch up with family, give the kids a new experience. So there have to be a lot of things I can recall if I just put my mind to it. Ray isn't much help now either as he has very little long term memory he can access. But Trevor might be able to remember some of the events if not the years. Today Ray had a phone call from an old friend. I have kept up an email relationship with his wife but Ray and Des have not talked for maybe four years. Des was invalided by an enormous tumor on the brain that took two operations to incise and six months in hospital to recover from, that was 24 years ago. His wife has been his caregiver as he was left with brain injury that mimicked a severe stroke. He is a cheerful, larger than life character who has learned to live with the misadventure that left him severely disabled. Some of this is due to an assortment of friends who stuck with him and kept him afloat. They and his wife and her family have kept him comfortable, well looked after and with the feeling that life still holds a lot of promise. They are two people of faith who live life as well as they can, and in doing so provide a fine example to others. Des rang because he was worried that Ray's new problems would be too much for us and we would part company. He rang to comfort us and tell us that life is what you make it, each day is worthwhile and you have to get on with the hand you have been dealt. He talked about how wonderful his wife has been to him and how grateful he has been for the past twenty odd years they have had together. It is humbling to realise sometimes that those with bigger burdens than we have ourselves have much to teach us about gratitude. This was a phone call worth much more than he could imagine as it made me more determined to go on and strive to rebuild our lives once more. We all have powerful lessons to learn and the wisdom we gain from those lessons to share with others. We can be down and climb back up again. We can be despised and rejected and maintain our self respect. We can be sidelined and yet live in such a way that we provide a safe and secure place, like this site, for others to come to. Life is not impossible to live with our restrictions it is just a bit harder. No sissies here, just a few people striving to push the stroke to the back of their minds and carry on living. The phone call was nothing like a sermon. His quirky sense of humor shone through. He recalled one mate he had been close to and says he never sees him now, :"If they can't hack it, let them go" he said. "You have to stick with the people who stick with you." This is a lesson I have to learn over and over as I yearn to go back to the life we lived pre-stroke. I have to keep letting it all go, over and over, until it really does GO. Then I can move on and start to rebuild. I AM grateful to the people that have stuck with us and the new friends we have made through the experiences we have shared in the past seven years. It is true "that which does not break us, makes us strong" but it doesn't say how battered and bruised the experiences sometimes leave you, but all bruises fade eventually. Neither Ray and I can go back even ten weeks ago to when I didn't have to monitor his movements and use the wheelchair to run him in and out of church. There is never any going back. The critical event happens, the consequences are our new reality. We just have to get on with it. That doesn't mean there is not plenty of good times ahead. Just that I have to accept that they will be different to what I imagined life would be at this point in time.

Ann you have some wise words there. Had a neighbour with an irritating husband who's favourite saying was: "what can't be cured must be endured" and I think that applies to all of our survivor's stroke related issues. Ray and I tend to go to doctors lately and come home with more bad news than good so am looking forward to that next "plateau" where nothing improves much but nothing gets worse either. It can be real peaceful there! Keep your courage up. Sue.

Glad you enjoyed your "mini vaction". It is so good to build some new memories. Fancy those sheep just sitting by the trail waiting for you to come along! Going out for the day is a great cure for the blues too. Patrick might make a good gardener and if he doesn't hey! he has still had some time out in the fresh air. And the patio sounds a great idea too, particularly for family get-togethers. Hope it happens for you. Keep happy in spirit and you will both feel better with Spring coming on. Sue.

I kind of imagined that Ray would come home and life would settle back down again. I don't think I could have been more wrong. If anything it is like living in a washing machine at the moment, one minute you're up, one minute you're down, every minute you are moving! Ray came home on Thursday as planned. He was really glad to be home but I can see a big difference in him. He is just drifting, just doing what has to be done and nothing more. If it is mealtime he eats, just eating takes a lot of time now as he seems to eat in slow motion. Then he gets up and goes back to whichever chair he was sitting in before. If I ask him to he goes to the bathroom and washes his hands and face but if I don't mention it he just sits. I guess that is the long term effect of a long stay in hospital, you just take sitting and waiting as your daily task and everything else comes from people asking you to do something. But he needs to be up and doing or he will just continue to get weaker and weaker. On Friday we went to the doctor and the barber. Our barber is a character, as they all seem to be, and he chats and jokes and teases his customers. Ray loves the trip to the barber. "Look in the mirror, what a handsome man. Ten years off your age , mate. Look out missus will have to beat the girls off with a broom. You take care now, you hear." By this time Ray has a big grin across his face. The session with the doctor is not as good as the doctor reads all the discharge papers, looks up the new medications, agrees to all of them but one, the gout medication clashes with one of the others. Ray only gets gout occassionally and just stays off his feet for the day so he doesn't really need it. The doctor is now very concerned about Ray's ability to stay at home. We discuss safety issues, walking etc. I say I can cope at the moment. I think he is concerned for my health too but at present I am okay. But I am very tired. The few little jobs Ray used to do like the lunchtime washing up he no longer does. Not even made his bed except for one day this week. Adding those chores to the ones I already do may "break the camel's back". The weekend just went by in a blur, I am trying to get things back to pre-fall level, we shopped on Saturday and went to church on Sunday and Ray slept the rest of the time. He seems to need a lot of sleep again. This means only doing one thing a day not two and life is hard to fit in when that is all you can do. I am not feeling the best as the winds are blowing from the west again and my sinusitis is back with a vengeance. Monday we had a quiet morning, well Ray did, I have a lot of housework piled up and am trying to pack back a bit as we have the shower room going in where my old store room was and what the heck are we going to do with the contents of the store room? In the afternoon Ray had physio so we made a brief visit to Ray's Daycare "family" they were all glad to see Ray and the supervisor reminded them Ray will be back on Monday and they cheered! That gave him a real boost. The physio is another of those bright enthusiastic young men who knows that if the client just does all the exercises every day at home all will be well. I won't give you my opinion of that thought as I want this to be an upbeat entry for a change. Tuesday the shower nurse came, she was bright and breezy and fortunately on time. We had a funeral to be at at 10.30am so she arrived at 9.15am, swung Ray into the shower and brought him out all pink and clean. She said she could do other jobs if I wished to fill in the hour but I explained that we really needed to be out of there by 10am. And we were. Just. We had to pick up a friend and went to the funeral, burial and funeral tea. Didn't arrive at the tea till 12.30pm and then had to leave to take a neighbour to Craft, went back to pick up Ray, went back to the church for Craft etc. Made a bit of a whirlwind of the day but we survived. One amusing incident happened at the funeral tea. It was held at the deceased person's house. She had a lovely garden planted down the long sloping land, designed as a rainforest with twisting paths and steps at various levels. Like most rain forests this is supported by.....well, you guessed it....rain. So when the rain started softly falling right after we got there, so did the pipes running overhead that use the water off the roof as additional watering, so the guests got quite a good sprinkling. Most hid under strategically placed umbrellas and avoided the worst of it but Ray had been carried down two flights of stairs in his wheelchair and we were a bit short on cover, so a small hand-held umbrella had to do the job. I then went away to do the first run to the Craft group. Then some of the the men of the party decided Ray needed to go inside so could walk up the stairs with a bit of help. So taking him under his armpits between them they hauled him up! Being a "bloke" he of course did not mention that he was not allowed to do stairs, has osteoporosis etc so they thought they had done a good deed and I wasn't about to say otherwise. On the other hand he got no sympathy when he mentioned the next day that he was a bit sore under the arms either! He has to learn to speak for himself if I am not with him. Wednesday our four volunteers from our Apex40 club came and started the shower room, it was the best part as far as they were concerned, the day of demolition! So the walls and floor were cleared and then out through the window the wall cladding went in small enough pieces to fit through. Then they jack hammered a new waste pipe area, and reefed up the concrete outside. I am the builder's labourer who gets to cart it all away though. Wouldn't you just know that had to be the case? So all my store room content is out under the shelter of the patio roof and somehow in the next few days I have to filter it all back into the house. Yesterday I also had to clean out and repack the freezer so I am really starting to feel as if all this comes at a pretty high price. My aching back and my aching arms! My.... look what a large pile of rubble there is to clean away before Saturday. Imagine me red in the face and hauling concrete to fill in holes at the side of the driveway for the rest of the week.

:beer: To your best friend. May you have a long time together. Sue.

Betty Jean you've got to celebrate the small successes. Getting Jim into the garden and out into the fresh air is good. There is healing in that. And the vitamin D in sunlight lifts your mood. When Ray had stroke no 4 our doctor said to go somewhere every day to stop depression, so if Ray doesn't want to go out I say : "Sorry, doctor's orders." And mostly he just likes being out where people are as long as there are not big crowds. Plan little outings if you can with the nicer weather coming, maybe to some of the places with happy memories attached to them for both of you. Good luck with your re-acclimatising Jim to being outdoors. Sue.

:friends: :friends: :friends: (((hugs))) from Sue.

Welcome to the blogging community Brad. We are all here to vent, brag and upload some of our experiences to help others. In doing so of course we do come to terms with ourselves and the new normal in our lives. I've been blogging along for over a year and really benefit sometimes in seeing the ups and downs Ray has had and how we have handled the changes in our lives. I have him home after eight weeks in hospital and am rejoicing in that. I think those "invisible defecits" such as your facial numbness must be as hard to handle sometimes as a leg that doesn't work but probably gets you less sympathy. Big welcome anyway and hope to learn more about you from your blogs. Sue.

Ray is home. We've had our first fight already so some things haven't changed...lol. I picked up the quad stick at the "lending store", the hospital provides it free on loan for three months so he shouldn't need it after that. I got lost because it is up the back of an old industrial estate, waaay up the back. But still I got it. I've also borrowed a narrower shower stool but have decided to have the little store room next to the toilet made into a shower room anyway. That way there is no hassles when he has to maybe have a wheelchair style shower chair. Looking down the track that could happen. I have all the gear to give him his first insulin tomorrow morning, still shivering in my shoes about that but a lot of you have shared your experiences so I know that practically I have to do it and it will be okay. Also got a run through all his meds, he has five different or new drugs now, the doctor might not want all of them continued, we'll find that out tomorrow when we go to him. There are meds for gout, a third diabetic med, a new one for the arhythmia and the calcium supplement and the b12 shots, weekly now, monthly later, so that is a heap of medication. Most of it will be subsudised so hoping not to have too much expense there. There is now a shower nurse twice a week and hopefully the minder on Friday mornings to give me respite. I will only at this stage have the help for six weeks as this is short term care package designed to give caregivers the incentive to bring an invalid home. Then if I am lucky I will get the long term help until Ray reaches 65 in September and then he goes into another catagory and I qualify for help more readily, well that is the theory anyway. I have had three very sad phone calls today. The first was to tell me of the death of an old friend, the second to tell me another old friend has just entered hospital in the final stages of terminal cancer which is sad but he is an older man and has had a wonderful life. The third to say another friend has just had a massive stroke, right side paralyzed, no speech, nothing but the hand squeeze to show he can hear. He is a larger than life storyteller of note who has been the judge of many a debate and once ran for parliament so his speaking has made him famous locally. What a crying shame! He is maybe 65. Since Ray has had his strokes and limited abilities we have made some fine acquaintances and a few good friends. All are much older than us and so slowly we will lose them, it is one of the disadvantages of having older friends. But when Ray stroked at 57 and had to retire these were the people who offered us help, emotional support and their friendship. We all have expereinced losing those we thought of as friends. For us some disappeared immediately, some fell away as the years went by so we have been grateful for the company of these delightful older women and fellows but are now destined to see them pre-decease us both. Sometimes life is like that. But on the brighter side I also received two offers of help, one to supervise the tradesmen I will have to get in to do the new shower room and another to give me a sitter for Ray if I need to go out. I will sometimes have to get away, to go the the pharmacy or to get my hair cut or maybe to see Mum for an hour's visit. This could be used when Trev is working nights so with him in the house as a back up I am sure this sweet little older lady could manage. She just has to keep Ray leg-roped to the chair. And that was what our first fight was about. I put on some laundry and Ray took the opportunity to go to the bedroom. He is supposed to have me by his side when he walks for the first six weeks he is home as he is still tippy on his feet and the fractured pelvis is not entirely healed. I need to write it on posters all over the house and record it on a continual loop and flash it across the television screen: "Ray, please do not walk unless Sue is with you". So if you see a rocket crossing the upper atmosphere trailing what looks like washing that will be a banner reading:"Ray, where is Sue? She should be right beside you."

Where are my friends? No easy way to say goodbye So just say "Hi" and let it slide. The bravery upon your face Can't take the pain away inside. No friends, no family but you no rolling back the evening tide. No place to go, no things to do Just this small shell you hide inside. No point in going on sometimes What keeps you going is your pride. One day when this is over, done I'll leave these thoughts of you aside. So up and go, another day That bitterness must be denied. Just do the things to keep on top For there are angels by your side. You thought you'd need to do so much Relax and let them be your guide. copyright Sue Wilkinson 2005. I wrote this a couple of years ago when life was pretty tough. Sometimes there just seems to be me, the kids are busy, friends have problems of their own. The angels are not necessarily "heavenly", they can be the biker who holds the door open for you to go through when you are pushing your mom in the wheelchair, the woman who with a smile helps you bag your groceries, the casual friend who rings and reminds you of someplace you have to go. Helping hands can be on the ends of anyone's arms, most of us just haven't learned how to use them for the benefit of others. Look around at the world and see what resources are available to you, who you can get in to talk to your Mum for a while while you do whatever. Sometimes friends will come if you call them first. The "ICU" crowd are "for emergency use only" like the axe behind the glass. They fade as soon as the crisis is over. Whoever comes afterwards are simply the folk who can cope. The best friend might still be that in her heart but unable to put it into action. I pity those caught up in that dilemma, so sad to be subject to such fear of death and dying that it separates you from your friends. Thanks for this insight into your heart in the poetry you share with us. Sue. PS I wrote the poem for Mum with dementia, not Ray after his strokes.

Babs, cherish the good times. I breathe a sigh of relief when Ray gets up and he is well, chatting a bit and obviously happy. Those are the days we can go look at something like new furniture or go for a longer drive and he takes an interest. On other days when he is bleary eyed we stay close to home. It is like he has a spark plug alternately firing and not firing. Pity there isn't a pill for that! I'm lookng forward to Ray coming home tomorrow. I have the Diabetic video to watch today so I am ready to give him his first insulin injection at home on Friday morning breakfast time. Sue.

It is good you have rediscovered how to make sandwiches, they are such a basic food and do save you heaps of money. I'm sure you will gradually overcome some of your other fears now, your self-confidence is growing in many ways. Now you can start going on picnics again and enjoying the great weather in the great outdoors and all that marvellous African scenery. Sue.

Cindy, glad to hear Bob has recovered his speech but sorry to hear he is now battling cancer. When you've had a stroke the ups and downs of life seem to hit you harder. Ray too has had some problems the past couple of years that seem to have taken a lot of extra time in recovery. I guess as a caregiver you just have to allow for that. It is the same old taking a day-at-a-time as stroke recovery. Build some good times into your life if you can so that there are happy shining moments among the daily struggle of life. (((hugs))) from Sue.

A delay of " a few more days". Among other things I now have to see the nurse educator who works in the Diabetic Clinic, Ray is to have morning insulin now. They also don't have the results of Friday nights tests back yet. Ho Hum. ZZZZZZZ..... Sue.

I need a holiday and yours sounds just like what I need. But with Ray in rehab still and summer coming to an end I don't think that is likely. I might try a "holiday at home" where you go out to eat every day, hit the tourist attractions if you want to but sleep every night in your own bed. A friend of mine suggested that and I think I will do it a month or so after Ray comes home. No cooking!! And no travelling means we save on fuel and accommodation costs and Ray gets to stay in his own environment too. Waiting for you to fill in the details about the rest of your holiday. Sue.

Ray's AFO is just plain but it is new and it does fit well so he is pleased with it. Kimmie glad you have found some medication that suits you and makes you happy again. It is so good to wake up and really feel alive on the good days. Sue.

Babs ((((HUGS))) that's the biggest hug I can give you. Sounds like a critical event of some time, did anyone suggest another MRI? I always remember that Ray's 2005 stroke was "nothing" until it appeared on the MRI! See if you can get his general health reassessed by your local doctor. It is amazing what a full blood test can pick up. In the meantime give both of you soft easy to digest food, a few quiet evenings, plenty of warm fluids and if you can manage it, plenty of rest! I am sooo sorry this is happening to you right now. Sue.

Well, Ray is back in Woy Woy, we won't have any results from tests he had done in Gosford until Monday when the heart specialist looks at them. He says he hates going to Emergency, he didn't sleep a wink! As soon as he got back to "his" room he started to demand lunch so nothing happened to his appetite....lol He was vey tired so I left after a couple of hours. He will be fine I think and hopefully the Tuesday release date is still on. Thanks for the prayers and hugs, I sure needed them. Sue.

Ray is back in the main hospital for a couple of days while his arrhythmia is checked out. It may be nothing major but like arterial fibrillation it is known to throw clots and cause TIAs so they decided to look into it. He had a routine blood pressure and pulse check yesterday and he was way beyond normal. He was taken to the major hospital last night but put into emergency care for 24 hour observation only. If he has a further episode they will re-admit him but this time to coronary care. Frankly this is very disappointing. He was coming home on Tuesday being declared as fit as they could make him. I am just about over all this and now something else happens. He does have these episodes at home though I always thought it something to do with his diabetes. He gets hot, complains about the heat (this can even be mid-winter) so I take some clothes off him, put the fan on him, give him a drink and within half an hour he is back to normal. Now it seems this is his heart racing and the arrhythmia not the diabetes. Well bless my soul, it's back to the Nurse Susie role again. Would I please buy a thermometer, would I consider a blood pressure machine? NO!!!! So here I sit, waiting for the hospital to call and tell me what they have decided. I could go in and sit with him and get under everyone's feet but I don't know what good that would do. Last night Ray was in a constant twist, as soon as his heart monitor was connected he took one of the leads off, he said there was a funny beeping sound in his ears. Then he fought the oxygen, said they were trying to burn him up by putting hot air in his lungs. He finally was given something to eat and calmed down. I think the dementia kicks in whenever he finds himself in a stressful situation and he starts reacting in the way a small confused child would. He reacts to me as if I am doing a lot of this. He doesn't see it as someone trying to help him. Usually if I talk softly to him for a while he will relax and calm down. At last someone more senior than the trainee doctors in ER came along and laid out a plan of action. Yes, even more medication will fix the problem, and it is this one if it is this and that one if it is that. My mind said :"OH yeah?" in that cynical way long term caregivers have. The question never answered is :" And what will the long term effects of that drug do?". I don't want to learn to live with Ray vomiting, having more severe diarrhoea etc. Been there, done that. Ray is the compliant patient when the important doctor is around. Though he seems to have forgotten ever being hot now. I came home late and felt like just diving into a deep dark hole. No, this is not depression. At dementia group we had a lecture on the difference between depression and sadness. I guess sadness kicked in because I saw the future again - Ray acting childish, more care issues, more problems, more tests, less time, less money less freedom. And if anyone is wondering as a full-time caregiver, YES, it IS all about me. How I cope determines where Ray spends the rest of his life. So this is Saturday, end of week seven. And nothing much is sure any more. But with a bit of luck he is back to Woy Woy Rehab, still discharged on Tuesday. I can hope can't I?

Had some time out with my grandkids today, went after lunch and had a play with Alex ( 8 months old) then picked up Tori from school and took her to swimming lessons while her Mum went to the airport to pick up her Dad who had been interstate for a job interview. Boy, it was such a good feeling playing with those two little people. Asha, thanks for your advice. I do have to remember my future is not in my control and that whatever happens there are good times ahead. I just am not focussing on the good times at the moment. I must try not to get bogged down in the detail of life but look at the bigger picture. As soon as Ray is back home I will look at including some grandchildren's activities in our routine. They may be leaving to go interstate but we will cross that bridge when we come to it. Thanks for your replies. I know I must seem a bit of a sad sack at the moment but this too will pass. Sue.

Hi Wendie Glad things are better for you, I've missed you at Caregiver Chat. Ray gets confused with any infection that raises his temperature and also seems to take a long time to get over the tiredness. Glad you and George were able to have a long talk, that used to sustain me after Ray's major strokes. Unfortunately he has gone quiet lately so it happens less frequently. Hang in there, Sue.

Jean, Ray and I have been together going on for forty years. We don't have a lot of interests in common but we have our kids and grandkids to distract us. We used to have a large number of family and friends who have been there fo us in the past, not so much so now. Much of the time we are together. He is now my constant companion. He is an essential part of my life. That should start again next week but I wonder how long for? It is the "unknowing" that is playing on my mind at present. Thanks for understanding where I am coming from. Sue.

" Stone walls do not a prison make, Nor four grey walls a cell" ~~Author unknown~~ I've been thinking, well that was what I do in the night when I don't sleep. I've been thinking about my life without Ray. He is still in hospital and will be for another week. AAARRRGGGH!! How long will this continue? Anyway I have been thinking about what I have been doing for the past six weeks and think mostly I have been waiting, waiting for Ray to come home, waiting for people to ring me back, waiting until it is time to go down and visit him. Ray has been home with me for seven and a half years. He came home in September 1999 after 4 1/2 months in hospital after having two major strokes four weeks apart. I spent every day just about with him in hospital, rehab etc so that I could be his cheerleader and ensure that I knew exactly what was going on all the time. This time I have had a few days off as boredom sets in very easily for him, he gets tired very quickly and I think he feels he is better alone a lot of the time. That is a slow change that has happened over the seven years, partly because he needs to have a lot of quiet time to heal and partly now because of the dementia. This leaves me with a lot of time on my hands which I use doing handicrafts of various kinds, coming here to Strokenet and doing housework and whatever else needs my attention around the house. I thought that while Ray was in hospital I would feel freer but it doesn't seem to have worked out like that, I think because he is always hovering at the back of my mind. It is impossible to recapture that care-free pre-stroke lightheartedness I was once famous for. In our lives prior to Ray's major strokes some of my friends thought that I was a bit of a clown. I always treated life as a bit of a joke. I could always see the bright side of life. For some people I was "Susie Sunshine" and being thought of as "religious" as well they found me a bit hard to take. I guess the years of caregiving have whacked that out of me. I still have a sense of humour but it is more basic now, the flights of fancy rarely happen. Even without Ray alongside this seems to be the case. I think I've built myself a prison cell. It is a large roomy comfy one but at best that is what it is. I have freedom of a kind yet I don't know how to use it. I think that is the case with some of the survivors here as well as some of the caregivers I have met in other support groups. They too have a large roomy prison cell called "home". They all spend a good proportion of their lives in the caregiving role and use some of their downtime wistfully thinking of all those things they could just do if they were free but don't know how to unlock the door and get out of there. I am going to see if I can get some counselling on this issue. Ray will be home next week and my life will resume the caregiver role. I may or may not get further help, I may or may not get some respite. I may or may not be able to resume some sort of life outside of the caregiving role. This is not supposed to be a down-beat, depressing idea. This is supposed to motivate me to go back a step and look at the life I live as a caregiver and see if I can improve on that. Please don't say "never mind, things will get better" I am sure they will. I know it is hard sometimes to see what is before you and not be depressed but life is always a challenge. What we make of it is really up to us.

You might be waiting a while for the next blog. I got a call from the social worker at the hospital today, she said Ray's discharge date has been put off till sometime NEXT week. I know all of this is for the best, I can't give him much of a life if he is not mobile. And he needs to be safe and not have any more serious falls. But I do miss him and want him here at home with me. Someone said I shouldn't be lonely as I had Trev at home - give me a break! Ray and I have been married a long time and I MISS him! Sue.

This time of the year as the church goes into Lent, a season of depriving yourself to benefit your soul, and in our neck of the woods the transition into autumn (fall) it seems as if I become reflective again. It is a sometime thing with me. Mostly I live life from day to day, don't plan too far ahead, don't look too far back. After going on for eight years since Ray's major strokes I know the danger of planning only to have those plans dashed by another stroke, or another critical incident. Yesterday was the end of six weeks in hospital for Ray. Last week we were told he will come home on Monday, now it may be Tuesday or another day. There are still some final tests to do. On my part although I would love to see him home I know that he still is not stable on his feet. So it is probably safer for him to be where he is. And today when I had to run through the heavy rain to get into church I was thankful I then didn't have to unload a wheelchair and get Ray inside. There is a covered walkway but it is difficult with traffic backing up behind you. Ray was okay yesterday but we had a talk about the things he doesn't do. Due to the dementia he has now lost a lot of the ability to initiate. So during the past six weeks he has only been out of his room for meals and to go to the gym when I am not there. I am the one who goes to find a wheelchair and takes him outside. He agrees to this if the weather is nice but yesterday declared it too hot and one day last week declared it too windy. I explained that at home I will have to over-ride this as we will need to go out on certain days whatever the weather. It was not received well but I can understand that in the past he would have just refused and stayed home and since the stokes this has been a sore point, in his opinion I am always "dragging him around". This time he has had no further kitchen training, not that he makes anything in the kitchen now and little training with hand-eye co-ordination etc. There seems no concept of keeping up with daily activities. I know he is there primarily to heal but with Ray's combination of stroke damage and dementia it really is "move it or lose it" and I am afraid that he will not be able to get back to the simple concepts that make life run smoothly like carrying his cup from the table to the kitchen etc as all these things have been done for him for the last six weeks. I left Ray watching a movie with a younger amputee. The weekend Activities Officer had asked "everyone in the place" to do this and Ray was her last hope. I don't think he would have done it except we were sitting in the area where the movie would be shown. It was a Bruce Willis movie so should have been okay. The young amputee, probably mid-forties, said he would like to see it. They were promised snacks and drinks so I hope they enjoyed that. It is so hard sometimes to get people who are in pain to relate to each other. With Ray's dementia his cheerful outgoing personality is slowly being replaced with a quieter one so he no longer reaches out to others in friendship as he used to. My week six was more of the same, visiting Ray, housework, a few phone calls and dinner out with girlfriends on the Friday night. The phone calls, visitors at the hospital etc are decreasing, this week he may have no-one but me go visit him. It is hard to keep up friendships etc when Ray's ability to relate to people is slowly disappearing. I know though that we will have those who stay friends for old times sake and that is good. Because travelling on this stroke journey without the help of friends would be very lonely. I am hopeful that in a few days time I can blog about Ray coming home. That has been the aim from the beginning. How that will go I don't know. I guess there will be what a friend of mine calls "shakedown time". But it is better to think optimistically that this will be the best thing for both of us.