swilkinson

Wow, Vix, scuba diving is so what Ray wanted to do after his stroke. But he never had a buddy to go with. Glad you have Greg to be by your side. And the news about being able to walk on sand means next summer can be the sand, surf and sea lifestyle for you. Congratulations on how far ye have come. Working and living life to the full as you do you really are a great example. Seems like life is coming back to a new normal for you and one very worth living! I am sure there are many more great holidays ahead for you. Sue. :chat:

Wow, Ellen, Denny is so COOL. A man who wants to change te world for the better. Hurray for Denny. There are a few aphasic members of our WAGS stroke support group and it is very interesting having a conversation with them, I think I am trying to be a word detective most of the time. But they are great guys struggling to communicate. More power to them. Sue.

When we were kids we used to play a lot of games which involved running away from a "catcher". One was called "Whichever way the wind blows". I think it had started with a story about children running way. From my recollection you stood in four groups on what would have been the compass points, north, south, east and west. The "catcher" stood in the middle. She spun on the spot and pointed at one of the groups and that group ran away with her in hot pursuit. The one of the group who was caught then became the catcher. Why, you say, is she telling me this? I guess it is because for the last week or so I have felt as if I am standing with some one pointing a finger at me saying; "Run as fast as you can." It has been a week of shifted appointments and I managed to miss two of them. One I re-booked for a fortnight's time and the other hasn't got back to me yet. But worse still I also came home from my "time out" today and found a note to say my sister had called to take me to lunch. I felt as if I had let her down. I rang her to apologise and she wasn't a bit friendly and reminded me I had talked to her earlier in the week and should have told her about my plans then. And I guess she is right as I vaguely remember talk of her taking me out to lunch this Friday. I had forgotten that as I also had a Dementia Seminar this morning which as it happened didn't finish till almost 1pm. I guess I should have rung her and arranged to meet her away from the house. But I didn't. The Dementia Seminar was interesting as the progress of the disease was explained as well as hints on managing dementia behaviours given. I try to go to a support group once a month if I can but don't always get there so the three hours of talks and a lecture by a gerontologist put some of what happened with Mum, who is at the end stages of Alzheimers and Ray who is in the early stages of Vascular Dementia into some sort of pattern for me and that was really helpful. Dealing with the physical aspects of Ray's strokes and now the mental aspects of his dementia is difficult. Some people here might be dealing with that with an ex-alcoholic husband or someone with a family history of dementia. Having a stroke and developing dementia does not necessarily go hand-in-hand but a TBI causing brain cell loss or anything else that causes brain cell loss like multiple strokes makes it much more likely. One good thing is that with Ray's lack of mobility he can't run away from home like Mum used to do. I think instead he withdraws into his shell when the world gets too much for him. As well as all this I am going to be away from Tuesday till Friday next week as I am going to Camp Breakaway with Ray. This means I will not get my "Ray free days" instead I will get meals, board and entertainment for a low cost and still have Ray showered every day and a nurse to see to him if he needs one. I decided to do this when he was still very wobbly on his feet and I didn't know if they would take him by himself. Now I think they would have taken him anyway but decided I would still go with him and share with him in this experience. I need to get life back in perspective so hopefully a few days away from home will give me a few hours thinking time too. By the pattern of dementia we were given today life is going to be tougher in the future. It seems as if the ways we have interacted in our marriage relationship have to be put aside while I deal with the effects of the disease. It was all about maintaining the relationship, not stressing the patient etc. I know that I, as the one who still has the brain cells, have to make the concessions. That is fair enough. But is still seems to me that all of this is about giving up, sacrificing the life I would like to lead for one that is not even a shadow of that. A younger woman sitting along side of me said:"No-one understands what we are dealing with." We say that here, as caregivers and as survivors. Any neurological event, be it stroke or dementia separates us from the mainstream of life. I visited a friend today before I came home and she asked after Ray and then said something that brought tears to my eyes. "I miss him , you know, your Ray used to make me laugh with all his little stories and jokes and now I look at him and it is as if he is not really there." I have that feeling sometimes too. But I will continue to look after him for as long as I am physically able to.

Thanks for all the support and encouragement. I am just coming to terms with the facts that we "ain't what we use to was" and that I have to be prepared to do half a trip, go to the same places but not do the same things. And maybe ring the main venue and check out the "wheelchair friendliness" myself. Jean, Ray would have sent me off willingly once but now needs more emotional support and does get confused if I "disappear" from his sight, I guess it is the dementia. Donna and Dickons, you are right and Ray probably will take a much longer time to heal than that allowed for by the doctor and physio. I know he always struggles back to fitness eventually, but it is never as quick as he or I would like it to be. Phyllis I bet you are right and the members who pushed themselves to do so much walking are probably feeling it today too. Bonnie and Sarah: :friends: June: a dearly beloved survivor is NEVER a burden. Sue. :chat:

Ray and I went for our bus trip today with the WAGS (stroke support) group. It is the first time in fifteen months Ray and I have been on a bus trip and in a way this was a test run to see if going on a bus/coach for a day trip or for a few days break is possible. Well, from today's experience it is not an option any more. But then I should have known that as soon as we did the pick-ups and I realised I was the only caregiver pushing a wheelchair. The trip went to a historic house the other side of Sydney. We had morning tea in the park where the Rivercats pull in for Sydney Olympic Park where the 2000 Olympic Games were held. It was a flat area suitable for all the disabled people but only two toilets so we more able bodied let those with an urgency problem go first. I made it back just in time to grab a cup of coffee. The people varied from a couple of ladies who hardly show they have had a stroke, by various degrees to Ray in his wheelchair, some came with a caregiver, daughter or friend and a few came alone, mostly they walked with a cane. The historic house proved very difficult although as a concession to the disabled it had a ramp. The guide said to the bulk of the group: "You follow me." to me she said:"You go through there, down there, across there and up there and you will find a ramp at the back of the house." I did, after crossing half a cow pasture, a pebbled garden area, a rose garden and a long sloping lawn. Because of the recent rain it was all soft and muddy and required a great deal of effort to get through. A couple from the group held back to help me up the ramp but that was all. We toured the house which was empty apart from a couple of furnished rooms. The guide then said:"Come on, follow me." to the group and to me she said:"Go back the way you came." Easier said than done when you are trying to push a wheelchair up a sodden cow pasture in drizzling rain. I finished up having to back up most of it. Just as I got near the top the bus driver saw me and came to help. Of the rest of the trip we were able to do lunch, we did see the sheep shearing, but I declined to attempt another cross country drag to another paddock to see the sheep dog round up the sheep. Enough is enough. I could of course have left Ray up the top and gone down myself but that kind of defeats the purpose of getting him out for the day. The truth is that we can no longer do what we did even twelve months ago. Since Ray's fall, with his current weakness and lack of strength in his legs we have an added degree of difficulty. We not only can't keep up with the able bodied, we can't keep up with the moderately disabled either. My back is so sore from dragging him backwards that I will have to take pain relief tablets to go to sleep tonight. All this is a bitter disappointment. I did think that by now Ray's injuries would be healed and we would be back to where we were, but that isn't so. I don't know why it shouldn't be so. He had a fall, he fractured his pelvis and hip joint, he did not have another stroke. The doctor says he is doing very well, the physio says the same. But he is still obviously nowhere near where he was mentally and physically to where this all happened in January. I need to find out why.

Last time I had a breast "squeeze" the gown was white, the atmosphere clinical and the results ok. Hope the other surgery is scheduled soon. For most of the people I know who have had it the results are worth it. ((Hugs)) from Sue.

Kimmie, sorry to hear you went through this but it seems that stroke loosens the ties of friendship and sadly former friends do stop calling, visiting etc. Hope that is not the case with this lady you have been so close to. The hurt does go away and we do make some new friends too. (((Hugs)) from Sue. PS Australia is a long way in miles but I'm just a PM away.

Betty Jean, a friend of mine lost her Dad a few years ago at 102, he too was in his own home until a few months before he died. He too was a special man. As you say it is amazing how much they have seen in a lifetime! So many changes. Is it progress or....? It was my grand daughter's birthday yesterday and today we had a birthday party at our house with some of the extended family. She is 6 so has 94 years to go to catch up. Sue.

Ken, our grandson is just learning to walk. It is a pity that older bones than his can't afford a few falls before they get the balance right. That would be the ideal situation wouldn't it? Ray is walking now, not as strong as before but walking. Do you go to a hydrotherapy pool? Ray did really well for a while with hydrotherapy, then suddenly got sick of it. While he was doing it it certainly built up his endurance. He now pedals an old exercise bike sitting on a chair behind it. This strengthens his hip flexors which also helps with balance and walking. I'm sure you are doing everything you can to strengthen your muscles and keep yourself flexible. Keep going and one day your wish to walk alone will be fulfilled. Sue.

I was always the helper too and since Ray's strokes I have had to ask for a lot of help. Some of it is from family and that's okay, some offered by friends was harder to accept. Now I have strangers come and shower Ray twice a week. Whatever it takes to keep him at home! My ideas have changed a lot over the last eight years since his major strokes and I am more accepting of my own failures as well. If I am doing my best, that has to be good enough. Hope you can come to terms with all you are struggling with. Sue.

It rained this afternoon so I watched a video and a couple of tv programs. I went to visit my Mum this morning in her Dementia Lodge and got her to giggle by playing one of those games where you pretend to be a spider, creeping your fingers along until they touch the hand they have on the table. The same game makes Alex laugh too. Also got her to drink her strawberry milk down too which pleased the nurses. She doesn't drink enough now and as a result has frequent UTI's which have to be treated with antibiotics. I did some shopping and yes! even bought a cheap sweater to begin the update of my wardrobe. Like some of you I hang on to my clothes two or three years longer than I should. If I have time later in the week I will attend to the sorting of my winter clothes, see what is worth keeping and bag the rest to go into the waste or to the charity shop. I'd like to close my eyes and throw it all away, but all my Scottish ancestors would spin in their graves:" just think of the cost, keep your baubies in your purse" they would cry. I watched an Australian movie called "Strictly Ballroom" about a ficticious ballroom champion who finally decides he wants to dance his own way, not the "strictly ballroom" style he has danced since the age of six. He has a mother who is a dancing teacher and a father who appears to be a bumbling handyman. It is a good movie and has a strange but happy ending. It brings back some happy memories of when Ray and I used to dance together. He was soooo smooth on his feet, we could glide and spin and our feet would never let us down. Ah! those were the days. So long ago. Co-incidentally I then watched a program on an Aboriginal choreographer and how he took up dancing and then nurturing young dancers. He compared the dancing of "white fellas" to that of "black fellas". He said white people dance with learned steps, even the young have moves they make that makes a dance authentic. He said "black fellas" dance to tell a story. They have some traditional movements they make but each dancer choses how they interpret the moves. They have to keep the feeling of the "dirt under their feet". I thought that was a very interesting idea. And having visited the Red Centre and a lot of inland Australia I can see how that evolved. The dirt under your feet, the sky high above your head, in some places that is all there is, with maybe some low scrub to use as a wind-break at your back. I wonder how where you live influences who you are? I have grown up in small villages, some larger towns and the coastal suburbs. I have never lived in a big city and the furthest I have lived from town is five miles. I lived in England till the age of seven and since then in Australia. I am an Australian citizen. However I don't have aboriginal blood so although I have had some aboriginal friends and think the life is fascinating I can't say I can fully understand it. But taking off my shoes and wriggling my toes in the red dust of Central Australia has been one of my life experiences. Ray's walking is gradually getting stronger. He walked slowly into church on Sunday. He takes a long time to get there but it isn't the time taken that counts it is the getting there. Sadly somedays I can still see superimposed against that shuffling figure the twinkle toes he used to be. He could run, jump, climb at a great pace. I can remember him a year before his stroke as steady as a rock on the steepled roof of our old church, bending over and fixing the gutter. Now he has to sit down to tie his shoe laces and just lately I have taken over doing that too, if we are in a hurry. It is so sad that he is slowly deteriorating again. His doctor seems a bit puzzled about why it is happening but puts it down partly to the dementia making all his thought processing slower, so something like tying his shoes which is a process takes more time. Sometimes I am envious of our friends who are once more, with the winter approaching, packing up their caravan, RV's etc and taking off to warmer climates. They sometimes see us in the shopping centre and cheerfully tell us that they won't see us for some months and give us a rough run-down of their future itinerary. It is hard to smile and nod and look impressed. I think I deserve a Logie for some of my acting on this one. I hope it is coming across as sincere as I want it to. Only in my dreams now do Ray and I walk in the sand, hand-in-hand. I had that dream again last night. Ok I can say, probably just that old, sad sentimental Sue and her wishful thinking. Acceptance - where are you?

Hi Wendie There is a balance between the caring you do for George at home, the demands made by your parents, particularly your Mum and the need to have more time to yourself. I have been there. It is not a nice place to be. But is it possible there may be a solution in finding someone to meet your parents needs too? Maybe someone to do some housework, take them shopping etc ? Then they will not be so reliant on you. In the meantime to give yourself breathing space look to fixing your care needs. If you need a caregiver three days a week have one three days a week. Maybe your present girl can do one day and you can find another to do a day too. A lot of what you are feeling now is just lack of time so your mind is going twice as fast to make up for that. Please don't blame yourself for any of this, you are doing your best. Just try and slow the process down a bit and you will find you can look at things from a better position to make decisions. (((Hugs))) from Sue.

There are a lot of well meaning people in my life. They come from all walks of life and from just about every period in my life. They may be friends of long standing or more recent friends. Some are maybe more in the casual acquaintance category but in the past those have sometimes turned into friends too, so I don't as a rule categorise them. They are all friends to me. I am one of those people who encourages others to voice an opinion. I do so here on my blog and in chat. I allow for people's ignorance of all of the facts and as much as their answer complies with my thoughts on the subject I am happy to say; "Sure, that is worth a try." I then consider how this will fit in with the strategies I am using and then give it a go. There are people here like Annie, Babs, Sarah, Jean and a lot of others who are in similar situations to what I am. They have husbands/partners who have had multiple strokes, who's conditions have maybe been better than they are now, and who get an uncomfortable feeling when they look too far into the future. I value their advice above a lot of others as I know they know what caring is all about. Others show sympathy, encouragement, hope in what they write and I am really glad to have their comments too. Still others offer a friendship based on mutual trust and caring and that is good as well. I am very blessed by you all. In the past week I have noticed that a lot of my friends, acquaintances etc in real time want to give me well meaning advice. The crux of this is often: "In order to save yourself you need to put Ray into a home. " It may be worded so sweetly and couched in flowery phrases but the bottom line is just that. This is very contrary to my feelings on the matter. I do not want to put Ray into a hostel or nursing home. I want some advice on little steps to take so I will feel comfortable with the way things are and be able to cope again. I know this might be just for a short time but the longer we are together and I can keep Ray in his own home the better. I find it hard sometimes not to be angry at what the well meaning friends say. But it is their view on what they see as the problem and as long as I do think they understand at least some of the situation I need to listen and pick out the pieces of advice that I can implement. A friend of long standing said to me today:"I know you don't take advice well." She is wrong, I do take advice. I look at all the angles of what needs doing and I eventually decide how I can do it. I can't see that any of us do anything different to that. Listen, learn , assimilate. Am I right here? We all live in a bubble of our own making. Sometimes we park those bubbles side by side and speak to each other. We communicate in whatever way we can our thoughts, hopes, dreams and aspirations. We do it in conversation, in chat and in a more obscure way, in our blogs. I am not saying to you straight out:"I am losing it. I am going mad. Ray has to go." That might be the truth for a moment or two but the next minute after that I might say."Look, he's sleeping now, I'll put my feet up. It is okay, I can cope for now." That is the way life is, it is not like a solid Easter egg, chocolate all the way through, it is more like Forrest Gump's "box of chocolates"... So I need to say to myself, let it all flow, take it easy, let time take care of your worries, keep on keeping on, take some time for yourself. You have all given me this advice at one time or another and I am really grateful for it. The wisest words are often the most trite, those sayings that seem to be overused are that way because they are wise words. Wisdom is just common sense in a more poetic form. It is coming up for eight years since the first of Ray's major strokes, 19th April, 1999, the day life changed forever for me. Maybe that is why I am a bit bristly and uncomfortable with life, why I am at odds with what I say and how I feel. This too will pass.

Ann, I am really looking forward to that upbeat, happy, funfilled blog. I just hope it is real for you. I don't know how you can be so PATIENT. I would have driven over to the facilities who have been tardy with the paperwork and hollered at them in person! I think it all just gets to you, the day-to-day caring, the future planning, the general feeling that it is somehow all on your shoulders. Thence comes the urge to just "run away" whether it is literal or in a fantasized sense into a "happy blog". Maybe we are living in a situation that in the foreseeable future does not have "happy ever after" as an ending but we can still discover we have some good days slotted in there. (((Hugs))) from Sue.

Jean, thank you for your comments. One of the older, more serious Lions came over to me tonight and asked me how I was feeling. I said I was okay. He said: "You seem to have lost your laugh. I hope you find it again soon. Please know that my wife and I value what you do for Ray. We are your biggest fans." He then gave me a hug. I was so surprised as I had no idea they felt any such thing at all! I guess we should never feel alone in our struggles as there are always others watching who wish us well. Thank you Bonnie, Ellen, Ann and Donna too. It means a lot to me that you are there. Sue.

This is not going to be a happy blog so some of you probably shouldn't read it. We all get confused sometimes. Forgetting things is normal. But there is a step beyond forgetting that can be signs of early dementia. Ray has vascular dementia but he has just completed all the signs of early dementia and started to show some of the signs on the moderate list. Because I was worried over a few incidents that have happened in the past week I went back to re-read some of the information I got from the Alzheimer's Association. I need to know what is happening and then learn how to handle it. Not sure if I can handle a lot of it if Ray's dependence and dementia increase at the same time as they seem to be doing right now. Signs of early dementia. The person may: . Appear more apathetic, with less sparkle . Lose interest in hobbies, activities . Be unwilling to try new things . Be unable to adapt to change . Show poor judgement and make poor decisions . Be slower to grasp complex ideas and take longer to do routine jobs . Blame others for "stealing" lost items . Become more self-centred and less concerned with others and their feelings . Become more forgetful of details of recent events . Be more likely to repeat themselves or lose the thread of recent conversation. . Be more irritable or upset if they fail at something . Have difficulty handling money Well that is Ray alright. Today we had an argument about something that I had put somewhere where he couldn't find it and the item was in his top pocket. Just the last of a lot of similar arguments he has started in the last few days. From the moderate dementia list he is showing: . Forget names of family or friends and confuse one family member with another . Behave inappropriately for instance going outside in night attire . Become angry, upset or distressed through frustration . Forget or confuse memories of recent events or events from the past As there are twelve items on each list four out of twelve does not mean he has moderate dementia but only that the dementia is progressing now. As time goes by he will slowly lose his ability to remember, understand, speak, recognise family etc. Mum is there now. She can still walk and eat. She has not had strokes like Ray who already has some impairment in those areas. I was hoping the increased signs of dementia was from the stress of the last three months since the hip fracture and they would start to diminish but so far this is not so. Ray is doing some of the exercises recommended by the physio, his walking however is still not good as he still bends his back in the same way we once took for granted as the way old people walked. That is to do with the way he perceives balance and that is an area that can't seem to be fixed. Therefore he will always be prone to falls. People with dementia can be difficult to care for, I had my mother here with dementia for two and a half years. She was probably where Ray is now when she came here. But she was completely mobile and so "ran away from home", stayed up all night, sneaked food and made a mess of the kitchen, exhibited a lot more irritating behaviour, behaviour which made a lot of extra work. She also refused to have a shower, became violent towards me when she was cross with me, deliberately broke things etc. From time to time she was so irrational that there was no reasoning with her. I think that was one reason in the end that I consented to her placement in a Dementia specific Lodge, where she still is five years on. I couldn't physically or emotionally look after both her and Ray. I may be able to go on looking after Ray for a long time yet. If his physical health does not continue to deteriorate I can manage his mental conditions until they are bordering on severe dementia. If however both his physical and his mental condition deteriorate it will be a day-by-day existence and that may be a problem.There is a lot of advice in my brochures for setting up the right environment for the person with dementia, the "Do's and Don'ts" list is long and of course says not to get angry, not to argue, not to tell the person what they can and can't do etc. I don't know how I could possibly do all they say is needed, or become the saint I would need to be to behave just right so the person with dementia was never confused, angry, frustrated etc. Maybe there are some caregivers who are that PERFECT! I think I prefer the last two lines on one of them: . It is critical you take care of yourself . Try not to ignore other important relationships in your life. Maybe it should include: . If all else fails, leave, don't look back, get a new life.

George, your blogs really amaze me. You are so the opposite of Ray's way of thinking. But I think Ray's stroke experiences have been so different from yours too. He has had five strokes and that cumulative effect seems to have gradually hammered him into the ground. Of course having the dementia now is another problem. I agree that it is good if you can afford to to try all these gadgets and gizmos, but I agree with Donna too that the great majority of stroke survivors do not have much more than the money it takes to feed and clothe themselves and so their opportunity to use some of these devices is just not there. That is the shame of our health systems I suspect as they should be available in every rehabilitation unit. We have had physio for Ray from time to time and that has sometimes allowed him to get back to whatever the level was prior to the critical incident, with multiple strokes, a hip break in 2000 and the pelvis fracture in 2007 he has done well to still be at home and mobile. I think he knows the level he needs to be at to stay home and fights to get back to that. Thank you for all the effort you put into the blog. I read it and get new hope not from the devices you advocate but from your determination to recover. It reminds me that it is my job as Ray's caregiver and cheerleader to keep on keeping on and allow him the right to access as much help as we can find. Sue.

Ann, there is help in all kinds of places. I have a plan for the day Mum dies, I can leave Ray at the Lodge for the day, they will book him in as a casual and take care of him for me while I do what I have to do if I need help. Most help comes from places you are already associated with: your church is a good place to start. Maybe among the A.A members there is a former aide or retired nurse who could help if you were desperate? We have Federal Government funded national telephone service called the Carer Respite Service whose role is to supply instant help, they have long lists of nursing services etc who have nurses on call. It all comes at a price but allows for the survivor to be looked after while the caregiver is hospitalized etc and looks after him/her until other plans can be put into place. Maybe there is a state service for that where you live? Some nursing homes or hostels will accept someone as a casual until such times as paperwork can be completed, I know one of the hostels run by the Salvation Army will do that. You really have to call any place you think could help and if they can't ask them if they can suggest where else you would look to find the service. It can't be an official state secret surely? Good luck with your search, ((hugs))) from Sue.

Ann, you and Baz have to be Stroke Ambassadors. Find out how you can get some media space: newspaper interview, radio, even television. Our WAGS group, about 30 in number, has a couple of guys who have really pushed to get the signs of a stroke out there. One has his face on the back of a couple of buses. He joked today that people come up to him and say :"I know you, don't I?" when they don't as they see his face on posters in their doctors surgery etc. Another is going to be interviewed on television for the connection between smoking and stroke as he believes smoking was the cause of his brain bleed. After stroke a lot of so called friends disappear. A few stick with us, and if we continue to be "out there" we make some more. Ray is stopped (and sometimes kissed!) in our shopping centre by older ladies who are helpers at his Daycare or who volunteer in Camp Breakaway where he goes twice a year. We are also greeted by members of our Lions Club, our church group and old neighbours. I think because Ray is in a wheelchair he is actually more noticeable, not less! You and Baz will have to find your own way of getting people to identify with him, as a survivor rather than a victim of stroke. I do promote Ray as a person who has fought back from the edge, for instance he has relearned to walk three times now. Survivors are seen as strong and worthwhile people. Of course I guess that differs from place to place too. Don't leave them ignorant of strokes, teach them about how to give people like Baz and Ray the respect they deserve. Sue.

Wow, Fred, your story took my breath away. I am so sorry. My condolences to all of your family. My prayers will be with you all. Sue.

Ellen, good for Denny. He is a fine example of someone who is not allowing a stroke to stop them from using their passion to change the world. That is what we can all do We are not robots or ants, we are sensiate, hopefully intelligent, human beings. We can go on and do things to bring the world right way up again, just as we have fought to do so with our own lives since the stroke event hit ourselves or our loved ones. Communities are shaped by the people who live in them, for better or for worse. So good for Denny, three cheers :cheer: :cheer: :cheer: for a man who can still address himself to the good of his community whole heartedly. Sue.

Hey David! You are a winner. There was too much to your story so I needed to read it a few times to see you in it. I guess you are the "never give up" guy, well good for you. I did hospital visiting for a church for a couple of years, drifting around a large hospital you meet a lot of guys in wheelchairs and as I had time I listened to their stories. It was a great expereince for me and in some ways prepared me for caring for Ray now. I will be good to get to know you better through your blogs. Sue.

"Ray is doing really well." a lot of people seem to be saying that to me lately. With some of them there is a lot of wishful thinking involved. If Ray is well they can back off and stop worrying about us and go about their own lives again. This applies to the kids and the couple of more distant families members on Ray's side, people who really do care about us. I appreciate their concern and I know how long all this has been going on for. Ray's illness has been a bit like those old time radio shows, a long drawn out affair to say the least. And those who wanted it to all end "happily ever after" have just stopped enquiring. So how well is Ray doing? He is not back to standing alone to shower, his process thinking seems a little less accessible, his willingness and ability to do some of the tasks he used to do, such as the lighter washing up of the few lunch time dishes seems to have disappeared too. Thanks to the physio he is beginning to walk with his weight more evenly distributed, a guarantee against falling as often. Nothing is going to stop him from having falls, we all know that. But the less he falls the less likely there will be more broken bones. And long periods of hospitalization. Today he had a shower nurse shower him, then we went shopping, came home and had lunch, then went back down to the physio who is in a building at the back of a small hospital just beyond the shopping centre. After carting building materials to the bins yesterday for the clean-up I was glad to only have to load and unload the wheelchair twice as my back is still sore from the pulled muscles on Friday. Another few days and it should be "normal" whatever that is. I could hear the physio arguing with Ray as he tried to get him to weight bear on his left leg. Ray could do that for a very short period of time before the fall, now he does not want to do it at all. I can understand that. There is a neon sign flashing on and off in his brain saying:"WHAT IF I FALL?" so he doesn't want to do anything he sees as risky. The physio is a muscular young man and I am sure could prevent Ray from falling but Ray's brain does not want to take that chance. He was really rigid with fear and could not relax. They are going to try again next week. I will try to reassure him before we go, that it is okay to do what the physio wants to do as he will catch him. I just hope that is TRUE. The last two weeks we have been back to the episodes of incontinence, mostly of a minor nature but for some time Ray was dry and clean all day. The shower room next to the toilet is a real bonus for those "have to have a quick shower" occassions and I am so glad it is operational. Bless all those who gave of their time to make it happen. But the big fear is as always what will happen if "it" happens when we are out and about. Just the thought makes me shudder. For those of you who cope with this all the time, ignore my venting here. Our visit to the doctor on Tuesday left me with a new dilemma. The doctor and his wife had been away for a short break, flying down to Melbourne and going across to Kangaroo Island. It is a delightful place, we went there three years ago. The diversity of wildlife and bird life makes it a "must see" for nature lovers. Anyway the doctor was telling us about his holiday and said that of course a holiday like that would be no good for Ray but he could see no reason why we could not resume going on our bus trips again. WHAT??? Ray still not weight bearing properly, with the added stress of a recent fall etc etc? Of course Ray's eyes lit up and he turned to me with a knowing grin as if to say :"See, I am well again." Now what do I do? If I do take him on a holiday there is so much work involved just to get up, pack up, set up the insulin etc before a breakfast that is usually 7.30am and departure at 8.30am for a tour of the local beauty spots or the drive to the next overnight stop. Excluding the inconvenience of steps everywhere, small pebbled driveways, blocked off doorways etc that slows this process down, it is still a lot to ask to expect me to push him from far distant rooms across dew-sprinkled lawns to the dining room, or down long winding corridors to a breakfast room. In the past I have set the alarm as early as 5.30am to get the shower etc in. I think it is asking too much now for us to keep up with able bodied people, albeit elderly ones. For bus trips you do have to have a certain amount of stamina and as yet Ray does not have that. On any trip there is the problem of the wheelchair and the luggage, so I have to make several trips to get us to our accommodation. Then there is the "sorry, we do not have a disabled room for you, dear" excuses that means I will have to try to balance Ray with one hand while using the other hand to hold the shower hose and hose us both down, that is unless there is only the overhead shower rose. Then I position him under it and just dodge the deflected soap etc. You all know all this stuff, if there is no disabled room we, as caregivers, have an extra load to carry. Add varying surfaces, strange combinations of furniture etc. heavy drapes that necessitate having the light on all night etc. Not what I would opt for as a restful holiday. But for Ray, sitting in the window seat and watching the world go by it is a different matter. I do get tired of trying to live up to other people's expectations. I do as much as I have the time and energy to do with Ray. It is a case of: "The difficult we do at once, the impossible takes a little longer."

George I have always been a goal setter but for me these days goals sound too much like a "to do" list and so add to the burden instead of taking away from it. When Ray first stroked in 1990 he went back to work after six months, I worked too to build up capital for all the things on our "must do" list and we did some of them, including two overseas trips. Post the 1999 strokes and his recovery period we still did some more travelling, sometimes on tour, sometimes with me driving. But the last two years have been different as stroke no 5 brought Ray to vascular dementia. Now my goals sometimes read : "get through today". I agree with Lucy, you are an inspiration. Sue.

Echoes of me I hear from you Kerry and from Ellen. It is easier to do it all yourself as having people "help" means setting up before and cleaning up after. It is exhausting caring for someone and while everyone else is having holidays, long weekends, time out and time off you as a caregiver are still on the job. We ARE amazing Kerry, and if the thoughts that go through your head aren't in line with the things you do every day, that is okay. You are on the job despite not feeling you can go on. Exhaustion is part of a lot of jobs, I am glad Ray and I had years together before this happened, some mothers have a caregiver role from the moment of birth. I can only give you all the advice that has been given to me. It is all good advice, implementing it is the hard thing. Take care of yourself. Sue.