swilkinson

Janine, one of the advantages we have in Australia is that a wife or partner can get a Carer's pension. It means living in genteel poverty BUT you can stay home and look after your spouse that way. We also have Medicare which gives us free health care and a pharmaceutical scheme that gives us meds with a small co-pay. I don't know how you can go to work and leave your loved one with someone else as I have had no experience with that. All I can say is: "Hang in there." and pray that it will get better for you and easier for Larry to accept your help. (((Hugs))) from Sue.

I have been writing a blog on this site for over two and a half years now. Sometimes I click onto "archive" and read back over the blogs expressing my past angst and frustration. I am surprised by my anxiety about something that later turned out not to be a disaster but happy to see that acceptance and even serenity is reflected in some of what I have written. By reading the comments as well I can see all those invisible hands holding me up when I was in danger of falling, Jean, Pam, Sandy, Sarah then Bonnie, Trina, Ellen, Kristen now Shirley and the rest of the chat group that keep me stable and connected. Thanks to a lot of thoughtful imput I have been able to utilise what I have experienced and turn it into valuable knowledge. I would never have done that without the help of a lot of you here. Ray's and my life over the past three years since the last stroke in May 2005 has been one of gentle undulations, there have been hills and valleys but not the steep slopes of the earlier years after the 1999 major strokes. We no longer define our lives by the strokes so much as by Ray's invalidity. There is no denying that he has had strokes, that he has been left with deficits that will never be overcome and that his life is maybe what one would expect in his early eighties rather than the mid-sixties. But this has to be accepted too. I am through knocking my head against the solid brick wall of what might have been. It doesn't matter what I THINK it is what is practical that I must follow. There are things we can do and things that we cannot do and I have to balance our lives using those as guidelines. Belonging to groups of all kinds helps me add width to our experiences. Our Lions Club, full of mostly older fellows who are still active in the community helps us to be a part of that wider community. Our barman, in his sixties, just got an Order of Australia medal for 37 years of working in the Surf Club teaching kids to become Life savers. How many good citizens has he set on the right path in that time? What a wonderful role model he has been. And there he is on our dinner nights serving drinks behind the bar as part of the fund rising to buy the next surf boat or the rescue gear they need to keep a popular beach on our lovely coast safe. Our Lions Cub helps out by giving donations in return, as well as paying the rent to use the clubhouse facilities. It is a mutually beneficial arrangement. Our craft group of older ladies also sometimes helps out through the Samaritans group housing project. Last year we cut up squares to make quilts for the local women's refuge so that some woman could walk into a room that looked homely and maybe for a few days forget her hurtful past and learn to live again. Last Christmas we packed parcels of personal hygene items, soaps, deodorants, body talcs etc to give out to the residents of local "guesthouses" and hostels for the poor. To some of those men that Christmas dinner and that gift was the first they had had in many years. One volunteer described how she cried when several men came over and thanked her profusely with tears in their eyes for "the best Christmas dinner ever". Ray and I couldn't be there handing out the meal but we were there in the packing and knew what we were doing was to contribute to anothers well-being. We have to try and find a balance this far into our life. We have had friends drop away, I've blogged endlessly about that, and family memebrs shun us and disappointments and disasters as everyone has. That is part of the human condition. But we are growing older and can now be philosophical about issues that once would have caused angry outbursts and tearful moments. It IS easier the further down the track you go. Ours is not the slippery slope of trauma but the gentle slope of ageing now. I think the last visit to our northern family gave me a bit of thinking time. I have realised that I no longer need to dash about as I once did. I was always a bit hyperactive and had to fit a lot into every day. My friends would say admiringly: "I don't know how you do it!" and I would take that as a compliment. I don't need that kind of praise now. For the caregiver there is little praise that means much. Of course some folk say: "You are marvellous the way you look after Ray." I used to hate this at first but now take it as if they are saying I do a good job which I think I do. If they continue: "I would never be able to do what you do." I always say that they won't know if that is true until the time comes. None of us do, read you own early blogs and see how far you have come in that respect. So I am willing myself to take things slower. As Sally said in chat tonight we, as caregivers are no longer able to keep up with the house and yardwork as we used to do. We have to hire help, accept assistance when it is offered and get by as best we can. We cannot allow our pride to get in the way, if we NEED help we have to accept it from whatever source it comes from. It is all a learning experience. Just like we had to have help when we were small now we have to have help for other reasons. And if there has to be a cheerful giver there has to be an equally grateful and cheerful receiver. To those of us who are used to helping others this is a bit of a turn-around but we can do it. It is just a different way of looking at life. Maybe in a way a less selfish one. I am willing to walk this gentle down hill slope with Ray for as long as he is able to function at home. I am no martyr, I know I have my limitations. I know when I am tired and cranky and not coping the load seems more than I can bear. I know that when I am rested and refreshed the load seems light. I need to be sensible, take breaks when I need them, keep myself fit and healthy so I am able to go on looking after Ray. I need to start building time off and time out into my routine. Ray and I have travelled a long way together, forty years and more since we first met, we will be celebrating our fortieth wedding anniversary on July 26th. Ah!! what dreams we had back then. Of course some, like having a family together have come true. And that is good. The trip around Australia? No. But we have camped under the stars and flown half-way round the world and done so many things together. Now, earlier than we expected in the hot summer of our youth, we have reached the twilight of our days together. This is the sit and enjoy the sun time, the remembering time, the time of mutual contentment and enjoying the peaceful silence before the sunsets. This part of our life is painted in softer, fading colours. We are travelling at a slower and quieter pace and I hope will be more at peace with ourselves. But maybe not, there may be snow on the mountains..... But Hey! this is not the end, life hasn't finished dealing with us yet!

Kim, it is good you have got to the strategy stage now. The thinking will be as important as the pedalling in your future rides. My dad was a cyclist so I have heard a lot of tales of the "route to..." in the past. God bless him. I think you are doing great. Sue.

We had the dinner here last night for Alex's second birthday, lots of chicken and sidedishes and the chocolate birthday cake was a big hit. Alex got trucks galore for his birthday presents and was bubbling over with happiness. The other two were a little put-out by him gettting all the attention of course but Tori had a picnic for her birthday in April and Oliver turns one in August so I guess that will be here too. It is good to have the contact with family but it is tiring. Trev helped us clean up when the little ones were gone and I was still picking up chocolate cake crumbs this morning. We got up late and the shower nurse came before we had had breakfast. Ray had a high sugar reading as he had two large pieces of chocolate cake so was pretty slow this morning. Never mind, it was all in a good cause. Sue.

It would be good to say I have settled back into the routine again but so far the routine has been missing as a framework to our lives. There was no Scallywags this week, the birthday party for our grandson that we had hurried home for didn't happen and today it is cold and windy and I guess the weeding of the garden will have to wait. I did my chat hosting Wednesday morning (Tuesday night Caregiver chat) and it was good to catch up with a few people who are regulars on chat as well as a few people I hadn't chatted to for a while. I find chat is a bit like the talking we do to friends on the phone, it doesn't stick to a topic but wanders from one point to another. In one way this is good as it means there is a variety of things to talk about, in another it is not so good as it doesn't really act as a support. I guess there is more support in the replies to blogs than in chat sometimes, other times there is a lot of support there. Thursday was doctor's appointment, Ray had to have some scripts and we need to go to the doc about three monthly for those. He remarked that Ray seems to have lost weight again. Ray has a problem with appetite. He ate about as much as our four year old grand daughter did while we were away, nowhere near what I would call a "man size" portion. I know this is partly because he is not active so does not burn off energy and get an appetite from that. I "sneak" in extra foods, like making him milkshakes or putting fruit and yoghurt on his breakfast cereal but he never seems to put any weight back on. Still I think on the whole he is pretty healthy so it is not a big problem. We went out with friends for lunch on Thursday. This was in place of our regular get-togethers with our old church friends, half of them only want to met occassionally now so just half a dozen of us got together. It was nice to sit and eat and talk and laugh a bit. I miss those casual friendship days now, they rarely happen in our day-to-day life. Ray is fine if I give him a half size portion and cut it up pretty small. He sits and smiles and doesn't talk a lot but as four of the women were really vocal I don't think his contribution was missed....lol. We went to the shops both Wednesday and Thursday afternoons for a couple of hours each time. This was because I wanted to look as well as to shop so we did half the shopping centre each time. I hadn't done much shopping the week before I went away so a lot of the staple foods needed to be bought. I work on a budget so am always pleased with good buys. We have a large freezer so I can stockpile what is cheap among the frozen items too, so if it is beef mince on special this week into the freezer it goes and is eaten in the weeks to come. So today we ate the pumpkin soup I made in the weeks before we went away, one serving down, seven still in the freezer! Friday there was no Scallywags so I just had three hours off. One hour I spent with my mother, two I spent at Dementia Support catching up on what is happening with other caregivers. I also talked about how we managed while we were away as that helps others who are not confident enough to take the person they care for away on vacation. I came back and picked up Ray and we went out to lunch. I thought I'd better do something special for him, I know he loves Scallywags and was looking forward to going. Next week he will hopefully meet up with his friends there again. He and I shared a seafood platter, he likes to share as he can be in control of how much I put on his plate. We have both always liked seafood and although the place we were eating out at is in the economically priced end of the market the food is always well prepared and highly edible there. So we both enjoyed it. Saturday was supposed to be a birthday party for Alex but Steve had to take over the weekend on-call as the person who was supposed to do it was sick. The funeral directors are very busy, being winter, and short-handed for several reasons. Luckily Alex at two years of age won't be aware of anything unusual and will get to have special food next weekend with a little luck. As all the Dads here know sometimes when the boss says you work you have to work despite the other plans you may have had for the weekend. So we just filled in the day. There is always housework and laundry to do eh? Today it is cold, with a blustery wind blowing. Not too many at church as wisely the oldies don't come out on days like today. After lunch I attempted some gardening but it was too windy. So there is reading and beading and playing on the computer. Ray is snuggled in his bed with an old bedcover over him he prizes as his winter warmer for nap-time. What a contrast with last Sunday when we had a lovely picnic at Centennial Lakes in Cairns with temps about 80 degrees. We had a chicken salad lunch and a walk around the lakeside dressed in the light clothing of summer and enjoyed the sunshine. Ah well! good times never last do they?

Congratulations Fred, back-to-work is a good result. Just take it easy mate, don't want you "coming a cropper". Sue.

Janine, welcome home to Larry and congratulations to you, you are a hands-on, bonifide caregiver! I laughed out loud at your struggles with the diaper, Ray only has Depends so those are real easy. And he can use a urinal at night so that makes life easier for me too. Make sure you pace yourself and get plenty of rest as it is so easy to overdo it in the first few weeks when you want verything to get back to "normal" again. The "new normal" will slowly evolve and that is fine, you just have to let it happen. We will be here as your cheer squad anytime you need us so continue to keep us updated. (((Hugs))) from Sue.

Anne, there are so many ups and downs when you are caring for someone. It all seems so uncertain and that is very tiring, stress all the time can really drain you. Hope next week goes much better for you and you get some answers to what is happening to Dave. (((Hugs))) from Sue.

Boy! Can I understand you on this. Every now and again I get a glimpse of the "old Ray" some witty saying, a remembered story, a joke he gets and has a good laugh at. These are highlights in a dull week. Keep your spirits up, either things will improve or you will gradually learn to cope with things AS THEY ARE - the acceptance thing. In the meantime enjoy the sunshine of his smile. Sue.

Jean, what you may be dealing with here is some kind of inappropriate overreaction. I guess we'll never know why some people behave as they do. But we can act with more wisdom ourselves so don't pay this woman too much attention. To us of course our survivor is a "new normal" but to others they may appear severely disabled, we have to remember that. Unfortunately there is never a perfect balance in the way people react, is there? Go on encouraging Don to just be himself minus maybe some of those hug-a-stranger- tendencies. Heaven knows we caregivers particularly need all the hugs we can get! I've got some Downs Syndrome friends I can always guarantee will hug me when I need it. We all have a mental block about some degree of disability in others. I always find the "shouters" hard to take myself but try not to over-react. I think I need to practice calmness....ommmm. (((Hugs))) from Sue.

Ruth, I am so sad you have to be in this situation. At least for me Ray isn't violent. He is just "not there" a lot of the time. Our changes have come on over a long period of time and I am just learning to cope,with each change, through each bad patch, day by day. Hope is always there, but sometimes, like gold, it takes some digging to find it. ((Hugs))) from Sue.

Think of it this way Donna, there are a lot of people that love you...even here in this home... a whole world away. We love you, we love you lots. (((Hugs))) from Sue.

Happy birthday Katrina. I think you are just great, so positive and determined to be happy. Enjoy being nineteen. (((hugs))) from Sue.

Only just home and it is after midnight. I am happy to be home but sad to have to leave my northern family behind. Ray and I had a nice time, quiet but surrounded by family. It was good to be with the grandkids in the midst of their everyday lives, to catch up with all their news, see how they've grown, have the time to sit and share a story or a joke or just play "bouncy ball" for a while. We did do some special things, we ate out, went shopping, walked along the beach in a couple of spectacular areas. It was nice to have someone else doing the cooking, supervising the shopping, being in charge of the household. It was nice to have Craig take over the pushing of the wheelchair, Shirley doing most of the driving. It was nice to just sit in the passenger seat and stare at the scenery instead of being in the driver's seat as I usually am. The best thing was just having time to read and relax. Because once everyone went off to pre-school, school and work Ray and I had the house to ourselves. It was good though when everyone came back home again. Granma and Pa became a great excuse for all kinds of excesses. If Dad came home and we were all watching a movie it was because "Granma wanted to". If the kids wanted to stay out of bed a few minutes more Granma reading them a pile of books was the reason. If they wanted icecream it was because Pa likes icecream. It was a lovely idea of course and a great excuse while it lasted. I was glad that Shirley and Craig joined in too and saw the situation as funny. After all it is all over now and normal discipline resumes tomorrow. I found it hard the first few days showering Ray in their tiny shower cubicle and getting Ray up and dressed early so we could have breakfast together and they could all leave the house by 8am. I showered Ray about 9am and it soon became part of the morning routine for him. Yep, we did have a few incidences of incontinence, three days running ( no pun intended) in the first week but I worked out how to do a quick clean-up and get everything back to normal again in double quick time. In someone else's house you just have to do it as quickly and quietly as you can. I did laundry most days as I only took one large suitcase for the two of us and that meant just four changes of clothes each. But wash and wear had to be dry quickly and wear again tomorrow for Ray at times. The Cairns Salvation Army Corps were very welcoming again. Shirley and I played the worst table tennis at the "Girls at Play" night. It was so funny apparently that some of the "girls" rolled on the floor laughing. I catch the ball more that I manage to hit it so the score was about 1000 to 1 against me in the ten minutes or so we played. We went to Home League and the regular meetings as well so it was good to catch up with old acquaintances from our last couple of visits. If I do say so myself my daughter sure knows how to preach a sermon too. And with a lot of Islanders in the congregation the singing is pretty good so most enjoyable being there to worship with them. I made a pledge to be a "prayer warrior" too so if you need prayer just PM me with a short request and I'll add you to my list each week. While we were away one of the trees in our back garden came down after a powerful wind blew up one night so tomorrow I have to assess the damage and see if I can contact someone to take it away. The house smells musty because it has rained most of the time we have been away, the benchtops need wiping down, the showers cleaned etc but who cares? I will get to that. It is as usual "one-day-at-a-time" time here. Why spoil a good holiday by letting the cares of the world choke all the goodness out of life? I am sure soon enough the normal cares and concerns of life will crowd back in on us. Of course there may be bad days ahead. There will always be good and bad days, whether we are here or away. Ray's confusion worstened for the first week, but by the second week he had settled down and was enjoying being away. The grandkids don't notice that he is different, to them he is just "Pa". I was able to do some serious talking to Craig and Shirley, the changes in Ray are more obvious to them. I maintain that I will keep him home with me while he is happy to be here and while my health holds up. I agree with Craig's assessment that there will have to be changes in our lives but the ultimate goal for me is to give Ray as good a life as I can. Maybe I'll see some of you in chat "tomorrow". I'll try to read the blogs, check out the posts and generally get back into the saddle again. But I'll take life as slow as I can for as long as I can and go on enjoying that "holiday" feeling.

Well, why is it that as soon as you think life is settling down it speeds up again? I have been cleaning, washing, tidying, to get the house ready to leave. Add a lot of cooking/freezing to do as all of a sudden everyone is leaving me vegetables and of course I have to process them all before I go away. At least now there will be plenty of lovely soup in the freezer for those "too tired to cook" nights when I get back. I am having some more trouble with the care provider. Why do they employ pople who don't listen? Then maybe they woud know where the cleaning cloths etc are and CLEAN UP AFTER THEMSELVES!! We had *H* a nice looking woman in her late thirties. She seemed competent enough but she shouts at Ray. I know that on a list of ailments "dementia" probably comes next to "deaf as a post" but he is not hearing impaired. So on Monday before I leave I will ring the case manager and explain yet again and maybe the next person will just speak to him in a normal voice. A full day tomorrow as we will go to church in the morning and I had said we would look after our three close-by grandchildren in the afternoon while their Mum and Dad go to the movies. I haven't given them a break for a while so don't begrudge them one. I know how welcome breaks for the "couples nights" were when I was raising my three kids. We had to be able to afford a babysitter every now and again so we did get those times. Just as well we can still help out in small ways. I'm looking forward to them being here. Ray has had a few days of extra confusion lately, don't know why that suddenly shows up again. He is also staying up later at night but trying to sleep in in the mornings so his timing seems to be out of whack. We will have to be up and at the table by 7am in Cairns so he will have to get out of that habit. Maybe as well I might get him out walking in their back yard, I won't have Jeff to exercise him so will have to try and keep him moving and motivated myself. (Even writing it down here makes that seems so unlikely). It is a big job looking after Ray while we are away. I know the family are there and not having to cook meals is really a plus, but I have to help him dress, shower him etc. I am still responsible for all the A.D.L's he can't do on his own. So this time I am taking his medications pre-packed ( we call it a Webster pack) so I don't have to sort them out in the morning each day. I will keep the clothes we are taking as simple as possible, mostly wash-and-wear to make laundering easier. With the warmer days clothes should dry quickly and easily. In tourist towns you can get away with just a few changes of clothes so we should blend in okay....lol. I visited Mum on Friday and together we did our normal multiple laps of the facility. I told staff I would be away for a couple of weeks. I went to visit my old friend in the hostel only to be told he is back in the hospital again. I suspect his heart is failing. He has just turned 90. He looked after his wife for eleven years, it was a big strain on him as towards the end he did everything for her. I was talking to his sister and she said he should have put her "in a home" a long time before she died. Probabaly true of course but like us he made the choices he was comfortable with. He has had a lot of illness in his life and I have a feeling he has not long to go now. Dear old soul. So tomorrow evening I will have one final re-check of the suitcase and pray for a nice quiet windless flight on Monday. There are hurricane force winds at the moment further down towards Brisbane in Queensland but the route to Cairns takes a big sweep inland so we should be fine....well I hope so anyway. I just love flying so that part of the trip is a delight to me. It is just that with Ray along it is not really the same. I still have responsibilities . I am not on vacation really, just having a change of scenery.

Hi Sherry Enjoy your week away, it will be great, just you wait and see. The strangeness will wear off after the first day and you will get so much out of it. Ray had some rehab last year after his pelvis fracture and soon got back into the routine of exercises etc. Don't worry about being slow, if it takes you a while to do things you just have to take the time it takes. Ray takes 45 minutes to dress, but he does it all himself while I am getting breakfast etc and I appreciate that he makes the effort. I'm looking forward to your blog after you finish. I'm sure you will have a lot to tell us then. (((Hugs))) from Sue.

Janine, nice to see you write about Larry and life in such a positive way. I detest unarmed combat with vermin and pests too, but it is a part of life you can't run away from. You should see the damage you can do to a saucepan trying to kill a trapped mouse with it! Larry deserves the praise you are heaping on him but make sure it is based on fact. "You made me so proud today when you....." he will like it better if he can find out what he has done to achieve the praise I suspect. It sounds as though Larry is progressing at about the same speed as Ray did after his majors strokes, he had 4 1/2 months in hospital and rehab unit so a fair way to go yet. (((Hugs))) from Sue.

I went for a walk around my neighbourhood this morning. I do a walk on Tuesday and Thursday morning when the shower nurse is with Ray. The walk varies from 20 to 40 minutes depending on the weather, how long after Jeff comes before I left home etc. As I walk around my neighbourhood I think of the people who once lived there. The girls I grew up with, the young married couples we knew before we went off to the country, the teenagers our kids grew up with. It is a very pleasant way to pass the time. I was thinking this morning about a lovely older couple who once lived on the corner of my street. She was an Aussie, he was American . They met when her parents offered hospitality to the "boys" on leave in Sydney during the late stages of WW2 when "Cush" served in the Pacific area. "Cush" had originated from Philadelphia. I don't know his unit , I think he was a Sargent but couldn't be sure after all these years. They too had a daughter named Sue, always referred to as Susie, so she and I became casual friends as she lived in Sydney and came up quite often for visits as her parents aged and needed her help more. When her parents no longer could live unsupervised she took them to a Seniors Village near her place. Her Dad died and she then built another house and her Mum lived with her in a self-contained apartment. It was a good few years they had together and I kept in touch maybe once or twice a year. My favourite memory is of them at their small but comfy home. Jean would ring and say:"Come down for a cuppa after you put the kids on the school bus." So that is what I would do. Cush would tell stories of their travels, in their caravanning days or show me his latest "jewellery". He did lapidary work, tumbling gemstones for weeks in the tumbler in his garage and making pendents, ear-rings etc with the pretty stones which they sold on Saturdays at a local market. My favourite story he told takes place in the Phillipines at the end of the Second World War. He was an instructor and was asked to devise a course to help the boys who were now serving as peace keepers. A lot of them had left school early to join up and had little education. The Army decided they would use the time in camp to give them a little education to make their re-entry into American society easier. Cush had to devise a course to teach them simple mathematics. He asked his assistant to get him "bags of pennies" as many as he could get. He emptied them all into a basket. Then he would write up a shopping list on the blackboard and ask the boys to write down five items from the list, writing them down with the price beside each item. Then they had to come to the basket and count out the pennies until they had enough for the items. Then he would then say: "Now you have changed your mind and instead of this item you need a loaf of bread. Count up again and tell me how much extra that will cost." In this way he taught them simple sums that would help them in buying the things they needed when they got back home. It also improved their writing skills. He would finish this story with a twinkle in his eye. "Now those farm boys weren't silly. I started that course with six bags full of pennies and finished it with only one. Go figure." We are privileged to meet so many interesting people in our life time. Some we keep as friends for most of our life, some come into our lives for just a short time and some are just brief acquaintances but still leave a lasting impression. I think it was so sad that twelve months after her Mum died Susie died too still in her fifties. Her breast cancer was discovered too late to do much for her. It was such a blow, the loss of such a beautiful lady. I am glad she outlived her parents though as they could not have gone on without her. I have been blessed in knowing so many wonderful people in my lifetime. It is among the things I treasure the most, those beautiful memories.

Hi Beth, My husband Ray has had five strokes, no known cause. He is skinny too, no excess weight to lose in fact they would like him to gain some. Like you the strokes fire along the same line each time. I wish we had some answers but we don't. I use the low sugar, low fat diet so the results are good for both of us. I don't add any fat or oil to cooking unless it is absolutely necessary, eat sandwiches without spread etc. Ray can't exercise much but has some standing and sitting exercises called "Stay on your feet" he was given years ago and still does them three times a week. Sorry you had to go through this again. It is tiresome to say the least. Good luck with your recovery, I guess you know how hard it is going to be to get back to as active as you were before but it is only one day at a time. (((Hugs))) from Sue.

Janine, I think what Jean said is a little harsh. I think like all of us caregivers when we were new to the job you are trying NOT to take over. And in sharing it all with Larry you are trying to keep him in the loop. What is happening is that you are kind of overwhelming Larry, which I know was unintentional. So yep, keep it simple, don't give him the details and let him absorb the information slowly. Or he will freak out as he did this time. When I was trying to get a driveway up the side of our house so I could get Ray in on the level with his wheelchair I would sob and sob as my clever carpenter husband went all silent on me and turned away. I wanted to scream: "I am doing this for you, support me in this." but knew that he didn't want to face the reality of the changes I was having to make to the house. He wanted it to all go "back to normal", my reality checks were making it impossible for him to continue to deny what had happened. It was tough for him to acknowledge the true situation. I was not leaving him without hope, I was re-assuring him that whatever happened we would still be together. But maybe it didn't come across that way sometimes. I knew in some ways it was a desert where his mind was, and no picnic. He went away a worker, a handyman, a respected member of the community, a strong father figure not just to his own kids and came back a "cripple" in his own words. It took all of the 4 1/2 months he was in hospital and rehab to get his mind around that. He cried when he saw the concrete driveway where the garden and lawn had been. he cried when he saw the wall ripped out and a crude doorway put in to allow him a direct passage to the toilet. But , honey, it HAD to be done for him to come home. It is hard to take over another's "job" but it is as Jean says all about US as a COUPLE so that has to come across pretty strongly. I used to say: "I am doing this so we can be together again." and we still are after nine years. I am wishing that for you and Larry too. (((Hugs))) from Sue.

Ann, hope you have a guest room waiting for us. I am sure you will have visitors in that beautiful home. And Bill will get used to it once his familiar armchair etc is there. You are to be congratulated for having the courage to do this. I'd like to move one day but don't think I would have the courage to start from scratch. More power to you! Sue.

Ooops! Was it something I said? LOL :yadayada: :yadayada: :yadayada: I'm hoping that was not a response to what I said above but a personal comment on how people react to the unfairness of life? Right? Sue.

Somtimes I am really dumb. I think I have listened to what a person has said but I haven't really heard them. Tonight Ray was asking me a question. Now he doesn't have aphasia but the dementia seems to be slowly robbing him of some language skills. "What happened to the orange thing?" "What orange thing?" "The orange thing you took." "The orange thing I took from where?" We did this for a while before I realised the "orange thing" was a half eaten candy bar that I had taken off the dressing table this morning. I had put it in the bin. Ray had suddenly discovered it missing and wanted it. He is a diabetic, he has a sweet tooth and he does hide food so he can eat it without me seeing him do it. Mind you it does show up as a high sugar reading so I usually do know he has had "extras". I know that the explanation was not satisfactory to him. He wants me to ask what I need to do with something that I know is his. He doesn't need me to judge his actions. He doesn't need me to be his mother. He needs me to sympathise with his needs and treat him as an adult. I failed the test this time as no doubt I have done countless times before. It is not easy being a caregiver. It was hard from the beginning to make the transition from wife, mother, worker etc to being principle caregiver and the one responsible for all of Ray's various needs. It was hard with his first stroke in 1990. Looking back now I can see it was a mild one as he was back to full-time work within six months. But it was the first ripple in our lives. The realisation that we were vulnerable, flawed in some unthought-of way. He recovered enough to go back to work but I don't think either of us went back to being as confident again. We were both aware of Ray's deficits. I compensated by taking over his inhouse chores and doing some of the yardwork too. He never recovered his energy levels so we didn't go on with our planned renovations etc. We had some good years from 1992 - 1998. Not so much 1991 as the first year post stroke was full of rehab and uncertainty as everyone's seems to be. I also contracted viral pneumonia and was down for six weeks with that. But we got back into doing most of the things we had done before, not all of them...sigh. But life was good. If someone had asked me if life was Hell then I would have said of course not. We were coping, not quite at the same level as before but doing fine. I worked, first full-time, then part time while I finished my Diploma in Theoology. From 1995 after I graduated I worked part time in paid work and part time in ministry, unpaid of course. But we both had a good life. Ray was independent of me, working, driving, socialising etc. That all seemd pretty normal at the time. Our two older kids got married in 1993 and 1994. About then I noticed my parents getting frail, Dad had been diagnosed with cancer in 1992 and I was doing more with them. In 1997 Dad lost his licence because he failed a test. The hormone tablets he was on made his hands shaky in the mornings and that showed up in his driving. Poor man, it devastated him. I took over taking them shopping etc. I squeezed that in after work or by working a half day and having the afternoon off. As a part-timer I could do that. I was so lucky. Then the 1999 strokes happened and all that has been pretty well covered in previous blogs. Moving Mum and Dad in with us, Dad's death, Mum's Alzheimers. And of course for Ray the hip break in 2000, the next stroke in 2001, then a kind of hiatus period when only little things happened, falls, choking fits, so many kinds of treatment and therapy to hold back the ravages of stroke. And another stroke in 2005, with the onset of vascular dementia. Then the fractured pelvic and cracked hip socket in 2007 and more deterioration in 2008.... BUT life is not Hell, not for me and not for him. Life is what we make it. It is full of changes and challenges, it is full of sadness as our friends age and get ill or move away from us. We cope with deaths in the family and the isolation that stroke causes. But we cope. We get as much fun out of life as we can. Ray has his sunny verandah and his find-a-word puzzles, he has the few friends that still ring and come around. He has a good caregiver (me) who waits on him hand and foot and treats him like a little prince ( ok, not all of the time...lol). So he has deficits, but so do a lot of people his age for all sorts of reasons. And of course there are some of his cousins etc he has outlived despite their seemingly healthy lives. Some have succumbed to cancer, heart disease and strokes, all the things that usually start decimating the ranks of the over '60's. I can't say we have had a bad life. We have had some bad moments and I don't always deal with the challenges as well as I would like to. I have this ideal superwoman image that I try to live up to from time to time. Since 1999 all five of our grandchldren have been born and what a blessing they have brought to us. No-one knows how much they mean to us (except other besotted grandparents of course) and they have so enriched our lives. We have seen our children mature and take on new challenges like Shirley and Craig studying for two years and now out in full-time service with the Salvation Army. We are also blessed in our boys. They are not perfect, like us, their parents, they are flawed human beings but they are our flesh and blood as we love them and they love us. I think if there were a sliding scale with Heaven on one end and Hell on the other I would say we are closer now to Heaven than we used to be. Despite everything we have matured in our faith, in our committment to each other and to our family and to the community around us. I seriously don't think "Life is Hell after stroke." It may be for some people, but not for Ray and not for me.

I'm with Lin, I don't believe in making comparisons, hard is just hard and all the battles survivors do with stroke and caregivers do with caring are HARD. We came from a world which was good into a world where, as one of our oldtimers used to say, "Normal" is just a setting on the washing machine. We all have down times, times when we are blue, or having a full-on pity party and that is okay. It is okay to feel anger, to vent and to go right off the planet if that is how you are feeling. But as you say there are time when you suddenly see that life is getting better, you are more able to cope etc. Welcome to the blogging world, we look forward to getting to know you better through your blogs. Sue.

I'm glad you got trips to see your folks, both your Mum and your Dad. I used to talk to some of Dad's mates about what they did at work sometimes, it is good to know more about the way they were isn't it? My Dad was a wonderful person, I still miss him. Patrick driving will release you from some of the short hop driving jobs. So make the most of it. I love the freindly shop assistants at our regular shopping haunts. They act as part of our cheer squad sometimes too. Their cheerfulness puts a smile on Ray's face when we are out shopping. Enjoy summer. take a bit of time out if you can, drive into the mountains and have some adventures. (((Hugs))) from Sue.