swilkinson

Gary, it's always a pleasure to see you have posted a new blog. Thanks for the Kyle updates. Seems it it the same hard battle for the smaller stroke survivors and how much is that good support team needed eh? I am so grateful for all of those great people who still act as cheerleaders for Ray and me. I love your blogs. Like me you live in a world where people still connect to one another and you CAN ask this one to look out for that one. Please continue to update us about Kyle and his family. Maybe one day he will ocme here and have a blog himself, who knows? Sue.

Well, what a huge task that was. It seems as if last week I made plans for every day but all aspects changed as I went along. But looking back it was all for the good. It just proves that in the end it is perseverance that wins. I had such trouble with my old computer when the chat rooms changed. It coped all right with the old chat but the new chat was way beyond it's league! I could get into chat at first but the screen kept freezing and I would be five sentences behind everyone else. It was like trying to hold a conversation in Echo Valley! Then I couldn't get in at all. No way known would my stubborn old computer enter that room. So I wasn't able to do last Tuesday's chat at all. After I had so much trouble with my old computer finally my son rebuilt the "newer" one. Now for those of you who just type words in and there you are it is a lot of trouble to update any old computer. So Trev tried that on Thursday and Friday nights. But whatever he did the computer resisted all attempts to be updated. Reminds me of some good folk when the word "change" is mentioned. Stick their feet into the ground like a donkey and refuse to budge. Saturday we were all busy so on Sunday after church we started trying all over again. Trev went back to the old computers we keep as spare parts and now one of the frames did look promising so he updated it with Windows XP and all should be well. Nope, nothing as easy as that. The chat rooms still would not load. So we did some more updating. I think it could have been that Java was just installing the standard platform and not the updated verison. In the meantime we had visitors my sister and her husband came for afternoon tea. She is always with the best of intentions trying to improve my life! Well meaning people...sigh. Anyway she had seen a refridgerator at a garage sale she thought she would "buy" for me. So off she went, hubby in tow and rang to say she had paid for it and could my sons pick it up from four suburbs away? Our older son was here fiddling with my computer so we arranged for him to meet our other son who was at the movies and they brought it home. So instead of the other things we had planned there we were unpacking the old refridgerator and changing over to the newer one . Good thing to do, bad timing though. So on with the updates until at 2am I finally reloaded the Java for the third or fourth time and YEAH! Up came chat just like it should. I don't have the MP3 player but I do have chat. So when I get back from this next couple of weeks away I will be back in chat again! Hurray! I also got to chat to Ann Rogers on Instant Messenger. I hope you are all taking advantage of that and making new friends outside of the scheduled chat times. I am glad I can talk to people here anytime. I have made some good buddies here at Strokenet, and chat has been a part of that particularly in my lonely early days in 2005/2006 when I really needed that support to get me through the changes in our lives here. I read the newbies posts now and hear that echo of my own early posts - that lost and alone "no-one understands" feeling that suddenly seperates us from everyone else in our circle whose husband has NOT had a stroke. You know what I mean. I am not exactly expecting to chat soon as I will not be in chat for the next couple of weeks. But I will anticipate getting my chat "fix" soon. I will be back to hosting my chat (and maybe "dropping by" in other chats as well) from early November and hopefully for a while to come. So how many people does it take to update a computer? In our case two sons and an old lady who NEVER GIVES UP!

Doreen it sounds like heaven! I looked up the resort and it is first class. Ray and I are going to a three day break with carers, nothing so grand but all meals etc. I am hoping to at least slow down for a few days. It is strange how what you can "access" as a carer differs so much from state to state, isn't it? I consider us lucky to have access to Camp Breakaway as I know breaks at cheap rates are rare for carers. Glad having your son Steve look after Bill worked out so well. Sue.

Greetings from Trev's computer. He is supposed to be updating mine this week. Let's say the first attempt hasn't worked. But there is always hope eh? Sue.

Sorry folks but my old computer doesn't like the new chat set up and won't let me in. So for now someone else will do it for me. I will be updating my computer though when I get back from my two little breaks so I will be back hosting again. I will miss chat as it has been a big part of my day. Next week we are going to Camp Breakaway, it is only a short break, Tuesday lunchtime till Friday morning, but for me it is other people to talk to, others preparing meals and Ray still gets showered etc so virtually nothing for me to do. I find it is a pleasant break for me. He will go alone to the next session in November to give me a break at home. I'll need that as a run-up to Christmas, maybe get some shopping done and have that hair cut etc. It is a dilemma in a way how to make the best of your life with a long term invalid. It is not the same as living with a person who more or less recovers fully after a trauma. I struggle to answer the question: What is the best choice to give the caregiver a break? Is it respite, other forms of care, family support? I think it is whatever helps to keep the cared for person in their own home. And ultimately, for the majority of us we know that in the end we will have to put our loved one into full time care and then we will be struggling with the guilt that arises from that. The week after next we are going to Queensland for a week, to see Ray's brother who has lung cancer and his wife and to catch up with our other old friends who have been through a lot lately. Eric who worked with Ray many years ago has had major surgery for bladder cancer and frankly I think doesn't have a long life ahead of him now. We do speak to both couples by phone most weeks but there is so much more support in sitting in someone's house, drinking coffee and chatting. It is only human to want that full on companionship that only being present brings. I know that from having my daughter and her family so far away. It is lovely when she phones and I speak to the grandkids etc but it is no substitute for seeing them face-to-face. Ray and I just went to a birthday lunch for my friend down the road. She has no children but lots of nieces and they are a happy, noisy mob and all very supportive. I think she enjoys being with them all so much. It was really nice that we were invited to join in this time. I think they suspect that this is her last "good year" so were all making a special effort. As I said in a previous blog I went to the same school for a year as some of the nieces so we all did the "long time no see" conversation and they passed around photos of the latest grandchildren. It was a very pleasant way to spend an afternoon. I've been a bit down lately, not depressed so much as a little worried about the future past the end of the summer. Ray is not getting any more mobile. I have noticed he has more trouble getting up out of a chair and he sits a lot more inside now and does a fair amount of gazing into space. I wonder if the dementia meds are starting to lose their potency after him being on them a couple of years. The neurologist said that that might happen. I know I have to remind him of a lot of extra things now like taking his lunchtime meds. That was automatic before his hospitalisation, now left to himself he forgets to take them. There are good things happening though. Spring is definitely here now. The birds are so busy flying around and pairing off that they ignore humans and seem set to knock you down as they fly past. We have a lot of trees in the back yards on our corner of the street so we are in their path as they fly from one tree to another. There is not a lot of flower in the garden, I didn't plant any annuals but I have tidied the garden beds up a bit and they look good with green foliage and the occassional flower. Gardening always makes me feel so much better so I have been outside quite a bit lately trying to shake myself out of the post winter blues. I will miss you while I am away on my two mini vacations but will have access to the computer until next Monday and then for the weekend in between and if there is time I will update you on what is happening in our little corner of the world.

Kristen, thanks for sharing the photos. What a lovely day for a trip in the mountains with the aspen, the deer and elkand even someone to share the driving. Color me green with envy. Maybe one day I'll come for that promised visit and you can show me the beauties of your state, then maybe you can come here and I'll show you mine...lol. Congrats on the anniversary, every year is precious. Sue.

You may not be a photographer but I think you captured the highlights of the day well. Each place has it's own beauty and it is so good to get out in the countryside for a day. I am afraid I don't do as much of that as I would like to. Thanks for sharing. Sue.

When the shower nurse comes to shower Ray on Thursdays and put him through his exercises I go down to visit my friend who is having chemo for her cancer and we have a cup of coffee together. She only lives just down the street so I can walk there in five minutes. We laugh and joke, share family stories ( I knew her sisters and some of her nieces I went to school with) and so it is a very pleasant hour. Despite a fairly grim prognosis she is just taking each day as it comes and trying to live a "normal" life. I really admire her for the matter-of-fact way she is handling the chemo. She says things like: "I only have two bad days so that means I have five good days every week." Boy, I wish I could bottle that attitude and sell it! We were discussing this morning how our neighbourhood has changed. We have both lived here on and off for forty years so we have seen a lot of changes. I was complaining about the number of people who let the verge between their house yard and the road fill up with clover. Today with spring well under way I was walking along and kicking bees out of the way as they collected the honey from the flowering clover. In my youth the man-of-the-house would have had that all mown and tidy and no clover allowed in the lawn, just green, smooth, well looked after grass. There was pride in how you maintained the house and its surrounds back then. We didn't have much money and our furniture and our clothes were often hand-me-downs but we kept ourselves and our surroundings dusted and polished and we were "respectable". My Dad only had a low paid job for most of my pre-teen years and they had a mortgage to pay off but we never went without. There was always what Mum called "good, wholesome food" for us to eat. So if the neighbour grew turnips and we grew beans we swapped and so the casseroles had very little meat in them but a whole lot of turnips and carrots and onions and we were hungry enough to eat it all up. Now Ray and I are on a restricted income it doesn't seem so hard. We are pretty economical to run! We eat simple food, I keep clothes laundered and dry them in the sun, we don't go far from home usually so we can live with the high cost of petrol (gas). We even manage to save up and go on the occassonal night-out with the family and maintain our fees in the Lions Club though I wonder why it costs so much to do acts of charity sometimes. I know a lot of people on pensions do struggle so I guess, for both of us, our frugal upbringing is now paying dividends. Unlike today's generations we were not brought up in an "I gotta have it NOW!" world. Ray and I are managing with his new restrictions. I make him "shakes", thickened milk drinks that he seems to like. A friend asked him if he missed his "cup of tea" and he said not really. I am lucky he is so easy in what he eats and drinks, well mostly anyway. The overall cost of running a household with an invalid is higher, in extras like padded undergarments, extra laundering, food thickener, extra milk, more tender therefore more expensive cuts of meat etc. We have a co-pay for medicines and a "contribution" for our in-home care and a "fee" for Daycare so that is extra. But we can no longer live an extravagant lifestyle so I guess that is a saving eh? Trip to Paris? Sorry! Lunch at the best hotels? Probably not. And I am fortunate that Trev, like us, is a bargain hunter so if he sees a sign for cheap vegetables by the side of the road near a farm gate in he goes and comes home in triumph with his purchase. Trays of three dozen eggs from the Egg Shed cost the same as two dozen from the supermarket and are very fresh, well a day old compared with six to eight weeks old. So eggs boiled, scrambled and used in fried rice and pancakes etc are good food for a "change". And I grow some herbs and change the flavours of sauces and make savoury dishes that way. Trev is also excellent at BBQ's so that fills our summer with special dinners as well. I love to bargain hunt in the shops too so "never" buy today what might be on special next week. And we have a large chest freezer we have had for twenty years or more that I fill with my cooked and frozen bargains so a cheap price for ground meat can be translated into saving for weeks to come. We come from the generation that learned to save and we do live cheaper than a lot of people can who never learned to make a dollar stretch. I hope my Scottish ancestors appreciate the "canny" shopper I have become...lol. So back to where I started. I miss having a husband who would sit on the front grass and dig up all the clover and broad leafed weed so our lawn was a picture of neatness in the summer. Now with just me to do the work it is never as pristine as it used to be. At my age I have learned to accept that there are things I cannot manage to do now. And that means sometimes lowering what I think of as my "standards". And that is not always easy.

George I had a friend visit today and she told me a similar story of a friend of hers, a woman, who has had a stroke and just sits in a chair near the window wanting to die. I told her about all the stories we read on here, of people who start with not much movement at all and do so much by sheer determination. I think it made her even sadder about her friend as she knows she will never do that. It is true that some people just do give up. Your leisure might be forced but it is making you really appreeciate the energy you will be "allowed" to use when you are healed again. Ask Lesley to update that "honey do" list so you don't have time to be bored through winter. LOL. Sue.

If I'm not in chat at the right time this week blame the powers that be here in Australia for deciding we'd change to Daylight saving the first weekend instead of the last weekend in October. Don't ask me why. It seems we have too many changes on a whim and without a good reason these days. I didn't even realise we were changing the clocks until I was watching the late news last night. As that finished at 11.30pm it meant it was already after mid-night when I changed the time on the clocks etc. I know exactly where I lost that hour. Grrr! Of course if I have an "extra" hour in the day I should be able to catch up with some of those fiddly jobs I have been putting on hold for a while. You know that endless list of mine which contains items like "put up three pairs of summer trousers for Ray by three inches." Ray is shorter than he used to be and trouser sizes haven't changed so now I have to put them up. It is not one of my preferred jobs. One pair is from last Christmas, two from his birthday so I better fix them now so he looks smart for our summer outings. Another change happens this week. After eight years of going to Daycare on Mondays Ray is now to go on Tuesdays. It is to do with transport as on Mondays now they use a 25 seater bus instead of the old 14 seater and due to the extra length it won't come up our driveway. So if he goes on Tuesdays instead he can be picked up as he was before. It is a nuisance but I think it is too dangerous for him to sit kerbside and wait for the bus so it is better if I can just escort him down from the verandah when the bus comes. I can see this as a distinct advantage, particularly if we have a rainy summer. The disadvantage is that he loses the friendly faces from the Monday group including one of the men from our church who is a Monday volunteer. And then he joins up with another group of strangers. I am not sure he is going to be able to intergrate given his dementia and all so have asked the supervisor to keep an eye on him for the first few weeks so if he gets agitated etc she notices and lets me know. Of course he might settle in without a murmur. I sure hope so. The change also affects me as Tuesday is craft group and I pick up two ladies at 1pm so instead of visiting Mum, doing some shopping etc and getting home at 2pm I will have to be back by 1pm. The Daycare supervisor has agreed for the bus driver to drop Ray at the church ( only a short distance from where their hall is) and he will still have afternoon tea with the craft ladies and come back home with me. And we will need to wait and see what we will do with our "spare" Monday now. For this week it is Labor Day so we wouldn't do anything anyway. We had some rain overnight so I have been happily puddling in my pot plants, pulling out weeds etc. I love gardening, it gets me out in the open air, gives me exercise and in some cases gives me flowers to give away or put in a vase and herbs to go into my cooking. I would love to have a big vegetable garden but know I just don't have enough time or energy for that. I love going to look at other people's gardens too, the beauty and the variety of plants always makes me want to change a few things in my own garden. But without the use of water for the garden ( we are still on restrictions here) there is not much point in putting in more than I can hand-water. The Friday minder this week looked after Ray for five hours. This is because Scallywags has changed to fortnightly instead of weekly. I did my usual Friday stuff and squeaked home with four minutes to spare. Mum was still in bed while I arrived at her hostel, I waited twenty minutes before she appeared dressed and showered so most of the visit consisted of me watching her eat breakfast. The nurse told me that Mum's eyesight problems are due to cataracts not macular degeneration as they had thought. But she doubted that Mum with all her problems is a candidate for an operation. She went into a lot of detail for me and I see her point; aged 90, severe dementia, other problems associated with anesthetics etc. I would like Mum to have the operation, to see clearly again, but can see the downside of added confusion etc for her. I also disussed it with the mentor of the dementia support group. He pointed out to me that Mum might get "frightened" by all the strange people at her Lodge if she could suddenly see them. It would be like seeing them for the first time as her eyesight has been deteriorating for some time now. I hadn't thought of that, just the pain she would have to go through, not the consequences of the operation itself. I'll go on thinking about it and get a few more opinons. I would love her to see clearly again, sight is such a gift. And so we go on, coping with changes to the best of our ability as they come along. But sometimes I just long for peace and quiet and a world in which nothing much changes. I guess in a way that is another form of denial eh?

(((Hugs))) and prayers coming your way. Sue.

Hi Susan I'm glad to see you back, sad to see that Rolley is experiencing more problems. Has he been having regular blood tests? That is how Ray's doctor usually gets onto his problems. Ray's last hospital trip resulted in a three week stay, he has been home three weeks now and is almost back to "normal" except he is now on thickened fluids to avoid future bouts of aspirational pneumonia. His blood pressure drop was daignosed as anaemia caused by chronic kidney disease, caused by meds for diabetes etc. We just keep going from day-to-day. We don't look for trouble but it finds us anyway...lol. Sue.

Thanks for the support from all of you. I know it is okay to tell my daughter how hard it is for me but I know she has enough troubles poured out to her from members of the public plus she has a widowed mother-in-law who needs a lot of attention so I guess I try to put up a strong front so as not to worry her too much. I do as much as I can independently but know that Ray and the work he generate for me is sometimes too much for one person to handle. The carers that come in and the supported Daycare he goes to helps a little. As of this month Scallywags is fortnightly so some "time off" has disappeared there. Plus his Daycare day is about to be changed as the govt "streamlines" that service to make it more cost efficient. Don't they know stability is important to the people who use the service? In carer support as in everything else it is the dollars and the bottom line that counts not the needs of the individual. Sue.

We just had our northern kids and grandkids here for four days. All last week I did extra jobs to make sure the house and yard looked as good as I could make it look. It was a HUGE effort. I was pretty tired by the time they came here but Oh so glad to see them. I do miss them all so much and although we see each other at least twice a year it is not the same as when they lived two suburbs away. My daughter and son-in-law have a big job running a Salvation Army Corps in a large Queensland town/city with all its problems. Like most "churches" they have a few committed older folk and a bigger contingent of younger folk who have not yet got to the stage of really committing themselves to sacrifice some of their precious "family time" for the good of their local community. This mix means that although there appears to be plenty of people to do all the work required in a church that is both spiritual and practical it is in fact often left to the "oldies" and the officers to do most of the hands-on-work the public expects from the Salvos. And believe me in our changing social times there is far too much need for the churches to cope with. Shirley and family had come down the coast with a camping trailer using camp grounds that were animal friendly as they also had their cat and dog with them. They had taken four nights on the 1700 miles from Cairns. They picked up the other mum-in-law and went down near the Snowy Mountains for a week then dropped her back in Sydney and came up here. It was lovely to have them with us. We had nice weather so enjoyed a family bbq, a day at the beach, a shopping day and a night out. The days just flew by as they always do when you are with people you love for such a short time. I must admit that it was an effort to keep up appearances. I had a couple of incidents with Ray when it was a scramble to clean him up before everyone else got up in the morning. I did up his meds in our bedroom, set up all his clothes, helped him dress etc so we could go out to the living area with bright, happy faces. I think I could only keep up that effort for a short time before the cracks began to show. Ray was very good, only had a few moments when he said something silly and I could count the seconds before someone said: "Right..." and changed the subject. No nastiness or "arguments" from him thank goodness. I do want time with our family to be good times and for them to have happy memories of both of us together. Which brings me to the question: "how do others see us?". I know our son Trev who lives here with us, sees the bad times as well as the good and probably has a clearer idea of how Ray's condition has altered and with it my ability to cope with it than the other two do. He sees me down on my knees cleaning up the mess, exhausted late at night after some of our bad days, desperately trying to keep it all together. He says that he tried to tell his sister about it but she said her Dad looked okay and she was sure I was coping okay. I am sure that IS how it looked too as we were endeavouring to make life look "normal". So should we let our families see life in the raw or should we protect that family image? I am coping better with the thickened liquids now and have a range of containers I use to take drinks for him with me when we are going out. I didn't take anything with us on the night out as I was too flustered getting Ray and me showered, changed into clean clothes and ready to go out. But I made him a "drink" of vanilla dessert sauce and orange juice which whipped together seemed like the right consistency. It was probably WAY too high in calories and upped his sugar level but sometimes you have to improvise and compromise at the same time. And necessity is still the mother of invention. Today I have been trying to get some shopping done and pay some overdue bills. I let things slide a bit while I concentrated on the house cleaning and the refurbishing of the wardrobe. There are only so many "spare" hours in the day and I was filling them pretty full. So at last I have the bills off my conscience again. And the fridge and freezer have some newer occupants. Anyone else find that when the medical problems crop up they take so much out of your day? And that other things like shopping for groceries seem less important and so don't get done? I guess the garden needs some attention too so I'll spend some time on that tomorrow if the weather keeps fine. I am hoping to get a few days to catch up with letter writing etc, I seem to get way behind in that. And I'd like to have time for reading in the sun before the heat of summer comes, and sorting out my wardrobe as some of last summer's clothes definitely won't do this summer ...and...and...and..lol you see why I keep a list handy eh?

Katrina, you sound as if life is really getting you down right now. The questions you ask now are the questions we have all asked at some time in our lives. Sometimes we have got answers, sometimes we haven't. St Paul said he had learned to be content in all things, that is my aim in life too. That way whatever life slaps me with I will be able to get through it. I am twice your age and then a bit moe so I can't even begin to explain how I got here. Heaps of (((hugs))) to you from Sue.

Karen, welcome back. It is good to see you blogging again. I was wondering how things were going with you and Rob, particularly since his set-back. It is true that evry stroke experieced is brain lost, both physically and mentally and while you get some of it back it is never all of it. Ray has had some more trials and tribulations and if you read my blog you will see we have had our ups and downs. But as long as we are managing day-by-day that is all we can ask of life. And so far so good. Vascular dementia is one of Ray's diagnosis' and that means he has a fading memory, no process skills etc. He is worse than a lot of the others at his support group that have had multiple strokes so it depends on the number, severity and location of the strokes as to whether you get multi-infarct dementia or not. Ray has had diabetes for 18 years also so that is a factor. Anyway come on and help support the newbies as you can. We all appreciated the help we got when we first came on and now can help others out of our own experiences. (((Hugs))) from Sue.

Fred, we have a lot of places here where the "heritage look" is preserved at the cost of the town not being wheelchair or disabled friendly. When we used to go on bus tours, before Ray became unable to dress himself quickly etc I used to curse town councils that put a particular "look" before the needs of the people visiting them. It made my job as the wheelchair pusher so much harder if there were cobblestones, high kerbs, no access points etc. And shops with steps never got my tourist $. And it made it harder for the old people who had limited mobility too. As to where the handicapped people used to go - nowhere. They were hidden in back rooms, upstairs unable to get down or simply moved away from well off families and lodged with an old nurse or a family who would look after them. Think back to your youth and maybe you can think of families that had children or old folks you never saw except as a face behind the curtain or a noise behind a closed door. We are lucky to live in the age we do, where disabled people are tolerated if not fully accepted. There is still got a long way to go to be totally accepted, we just have to keep working on that. Sue.

Katrina, you are a lovely young woman, never let anyone tell you differently, it just shines out of you. All of us have periods of self-doubt, periods when friends seem too busy to bother with us, our best efforts are laughed at or tossed aside and our self-worth just disappears. The thing to do then is just to consolidate. Put your head down over those books. Stop feeling sorry for yourself and get to work, if you are working your marks will go up and you will win your confidence back. Don't sulk in your room, go to the library instead and sometimes into the gym or wherever the exercise equipment is found and work out with whatever equipment is there. I know you have some stroke damage but use whatever muscles work and make yourself strong agian. Write a lit of all the positives in your life starting: 1. I have a good personality 2. I am not afraid of hard work etc. I will leave you to make a list and you can post it here, like some people do in "100 things you don't know about me." This is too early in your life to say you are a failure. You just need to work smarter not harder and put your energies into the things that will help you the most. You can do it, you have the brains to do it, the personality to do it and the cheer sqaud (us ) to cheer you on. ((HUgs))) from Sue.

Janice, I only do about six blogs a month. There is only so much worth blogging about as Ray and I spend more time at home because he is so easily fatigued and we are slowly leaving the main street of life. Probably when people have finished winterising their homes they will have more time to blog. A lot of our regular bloggers from two or three years ago have gone back to a near normal life, some back to work, some moved on. I read a couple of dementia sites with forums as well as this site so there is plenty of different questions for me to ponder over in a day. Sue.

Fred, just a few days away from home, whatever the reason, helps you sort out what is happening with your life. Don't know why but sometimes you just have to see that view from a distance. I'm never lucky at cards or any kind of machine, I pay them money , they never pay me. So I stay strictly away from them. Like the others said ; enjoy the food and entertainment but leave the machines alone...lol. I'm sorry for the loss of your wife's sister-in-law. Loss of all family is hard because they all play some part, however small, in the story of your life. So tell your wife we feel for her too. Sue.

Wow, thanks for the pics of Lesly and the breadmaking. It makes my mouth water just looking at it. I wish I was closer and could drop in an order for some. Be patient with yourself while you heal. It is a time to sit in the shade and pat the dogs and daydream about the fishing aheadof you. Nothing is forever so just enjoy each day as it come. If a recession does come heaven help us all. Sue.

Janice, this is an Aussie emoticon because around the brim of the hat are strings with corks atached. At the shake of the head the corks flare out and frighten away the flies. If you had ever been to Central Australia in hot weather you would know how annoyingly "sticky" the flies can be! So you either wear a fly veil ( very uncool!) or some kind of hat that will keep the flies off your face, which is why the hat with the corks dangling from it was invented. I've had the problem of when the tradesman is finally ready the price is higher and the money has run out. Hope you can get it all fixed up soon. Sue.

I am not the only one here who has trouble accepting changes, Ray with his dementia is not able to change his thinking and so we had a chain of events happen today that was to do with that. As you know I had a new built-in closet ordered and it was mostly built by the time Ray got back home after three weeks in hospital. He doesn't process much information now (dementia) and so I have made a point of taking him through where all his clothes are now etc. So it surprised me that the carer had to call out to me on Thursday when I was chatting to Babsz. "Where are your drawers?" this was a giggle inducing question as when I was young we still called panties "drawers", and I was sure our very proper carer was not referring to my underwear! But instead he was looking for some clean ones for Ray. Ray had told him: "they are in my drawers" which was true right up to two weeks ago. So I slipped into the bedroom and showed Jeff where to find everything. Act 2: Today we had a carer who has been here on and off since about June. She is a no-nonsense person who doesn't particularly listen to the primary caregiver/wife/partner etc. I wanted her to be familiar with where Ray's clothes are now but she wouldn't look at the wardrobe saying: "I can't, I am not allowed to get clothes out for him. It is against the law!" This was a bit of a problem as I could see Ray pouring his morning drink down his shirt ( he did on Wednesday) and her refusing to change him. So I went off to see Mum, go shopping etc somewhat reluctantly. My second stop, after seeing Mum and walking round and round the corridors of the Dementia Lodge with her, was the dementia support group I go to. I am so grateful for them, they are very supportive, the lectures we get are very informative and quite a few of our questions are given sensible, doable answers. This has saved my sanity in a lot of cases as our mentor explains to us that we have to change as our survivor with dementia cannot change now. Sad but true is seems. Anyway I asked why the carer cannot look in the wardrobe for fresh clothes for Ray ( well Jeff does) and he explained it was a legal no-no when they are caring for a dementia patient as the recipient of their care may have paranoia and accuse them of stealing etc. He said while that is true common sense has to have the say and of course they need to know where clothes etc are and use them if the situation arises. This means me giving the carer permission to go to Ray's part of the closet, get out the clothes he needs and shutting the doors etc. Well, thank goodness for common sense. So I went off shopping and on my return rang the service provider and ran it past her. She was hard to convince at first but rang the carer, spoke to a couple of other people ( apparently) and rang me back to say I was right, the longer respite required that the carer "may" have to find clothing and put it on the client. Yes, a common sense approach to life, an assessment of the risk, a plan for the future. Yeeeeaaah! Every time a caregiver decides to do something he or she has to assess the risks. There are dangers in everything we (Ray and I ) do. He has so many issues now including the added risk of choking if he is given unsuitable foods or unthickened fluids. I tried him on a milkshake today thinking that that was slightly thickened and would be okay but he had a coughing fit while drinking that so it was thickened fluids for the rest of the day. So the risk assessment is serious for a lot of what we do. There is a risk of falling as well as choking. Which is why I now have to take him down the driveway in the wheelchair or by backing him down in the car as since the three weeks "bed rest" in hospital he is less agile and more prone to falls. So as in order for him to go to Daycare I have to load him onto the bus from the kerbside (long story). So now instead of him sitting on the verandah and waiting till they pull into the driveway, I now have to have him ready and waiting at the kerbside. @#*&%###! More work for the caregiver. I have to keep in mind that I can change but Ray can't. However annoying I find his behaviour and some of it is, he cannot change it at will. I just have to learn to live with it or find a way to circumvent it. None of this is easy. I am as human as anyone here and of course I want him to change back into a reasoning and reasonable human being. But dementia has the last word here and that is not going to happen. He will do whatever his altered perception tells him to do. He is not beyond walking or talking but in a lot of ways now he is beyond reasoning his way through a situation. This often leaves him frustrated and confused. And me thinking of him as mean-spirited and lazy. Which of course is not the case. He has dementia. Full stop. If anyone here finds accepting changes easy, let me know your secret. I do the one-day-at-a-time thing, say the serenity prayer, try to go-with-the-flow. The problem is the flow is not necessarily going somehere I want to go!

Ruth, you are at the stage I was at a couple of years ago, close to burnout because you have been doing so much for so many years. I didn't want in home carers either but mostly it has worked out. I have sometimes had to ring my care provider and "clarify" a point, I did so today. I try to do it as diplomatically as possible. The carers are good and not so good, I try to hang onto the good ones and see less of the others. The first respite is a mixed blessing. Do stay away for at least the first three days to allow him to settle in. Then maybe go for an hour's visit every few days as he can't settle in if you are there. Then maybe take a week off and visit again. Two years on I don't visit more than once during the two weeks respite. It is my time to be by myself and just BE myself. I know a lot of this doesn't feel like your choice but all of us who care for people with stroke plus dementia are on a path that leads to the person we love leaving home eventually, when they become too much for one person to look after. I am just keeping Ray at home for as long as I am able to. Sue.

I went to Wyong TAFE college to get my "Statement of Attendence" for the course I have just done on "Carer Connections". The staff were very pleased with us all as it was the first course and we were the guinea pigs. The information we have provided will be used to restructure the course and make it more focussed. It is nice to know we have made a valueable contribution to the training of future carers. While the teacher was giving her speech she referred to a popular television series of 20 years ago and a particular story. I think most of us remembered Paul Hogan before he became well known as "Crocodile Dundee". He was a stand-up comedian and had a program where he did character sketches. One character was a bumbling magician called Luigi. He had a beautiful ( she was a real knockout!) assistant called Maria. When his latest trick failed or his apparatus fell to bits, which it always did, Luigi would say:"keepa dancing Maria" and Maria would shimmy and shake to distract the audience. The teacher said it would be good to have a "Maria" to distract others so they didn't focus on the mistakes we as carers make. Just lately I have been subject once again to a lot of helpful advice. This comes down in a lot of cases to something like "put Ray into care or get more help looking after Ray and protect yourself". It is good, sensible advice and if I didn't love Ray and remember my appreciation of having had him as my husband for forty years I probably would consider taking it. But as it is I will try to get some more help with Ray, I will try to remember to look after myself, and I will continue to look after Ray for as long as I am able to do so. Ray went to Daycare, armed with the money he needs for the day, full of instructions from me on what to do and what not to do. Considering he has short term memory troubles and is not likely to remember what I say I don't know why I bother giving him instructions. But why break the habit of a lifetime...lol. New arrangements mean I now have to help load Ray onto the bus from the kerbside as they are no longer "allowed" to come into my driveway. Another silly rule, probably with some sort of safety idea behind it but none the less as a carer it makes life harder for me now. I also have to be at kerbside to help him out of the bus too. Today I parked the car on the road and drove him up the side of the house and walked him in the back door. That is the safest path and most direct route into the house for him. He enjoyed Daycare but came home very tired. I enjoyed my day as I was able to see Mum today after the presentations and fit in a bit of shopping. Mum sadly is badly bruised after yet another fall. At 90 she is having too many of them but short of tying her into a chair which she would hate there is no way of preventing her from the occassional fall. I have said I will take the responsibility for her falls ( I signed a waiver against suing them) and so it is a consult each time. But at least she is still able to go on living where she is and still has the freedom to walk the corridors etc. I grieve over her each time I leave her, it is so sad to see how she is now, old, bend and fragile so weakened by time and sickness. Nothing like she used to be. I have some more decisions to make. I need to contact my care provider and see if they are willing to fill in the gap by increasing the service hours when Scallywags goes back to being once a fortnight instead of once a week. I also know that all my services will cease in December and I need to book extra care now to be provided over that period and so avoid a period where I am more or less Ray's sole carer. It is okay to live day-by-day but you also have to plan wisely for the foreseeable future too. I enjoyed the weekend. It was busy unexpectedly as we did go to the church Spring Fair on Saturday morning and to the performance by the Sydney Welsh Choir in the afternoon. Both events were enjoyable in a different way. We also went to church on Sunday and had a friend visit Sunday afternoon. Ray knows now that it is okay to go to have his nap if a visitor is here as long as he says a few words to them first. Most people who visit do know the truth of what is happening to him and are quite willing to let him have his rest. This week is as busy as any of our weeks are and I will arrive at the weekend with only half the tasks I have set myself done. "Keepa dancing Maria."