swilkinson

Here I am, back home again. Where did that week go? A lot of the time was taken up looking after the grand kids but there was time for other things too. I went with Shirley to Timbral Practice and caused a lot of laughter by always finishing the exercise with my timbral ( tambourine) pointing in the wrong direction. The other ladies, mainly from Islander backgrounds, in the beginners class seemed much more musically agile than me and tried to help me with my rhythmn, which really made for a lot of laughter. Always leave 'em laughing, as an old style comedian used to say. Time sure flies by when you are having fun. There were trips to the park, to the shopping centres etc. The kids and I played totem tennis in the back yard and chased the cat and wrestled with their now full grown dog and played with her various toys. The kids have chores relating to their cat and dog and are really quite organised in what they have to do. Both had grown about six inches taller than they were when I saw them last September. It was good to spend that time with them. As Shirley had missed Mothers Day a fortnight ago and will miss my birthday on the 4th of June they took me on Monday evening to the waterfront to a nice restaurant where we had a lovely seafood buffet. The prawns were a mixture of banana prawns, a smooth almost yellow colored prawn and tiger prawns which are large with deep orange stripes, they were really delicious, the banana prawns sweet and the tigers tangy and I certainly ate my share of them. It was fantastic to be sitting outside at night, with balmy sea breezes blowing and the street lights on the Esplanade glittering in reflection on the water and knowing folks back here were rugging up with temperatures at least ten degrees colder and the winds ablustering and the rain apouring down. Does you good to gloat sometimes eh? Not all is sunny in Cairns, Shirley has a dispute between some of the ladies in her group, they are good Christian women but not angels so there is always a difference of opinion here and there. Of course they were very busy with their annual fund raising appeal but unfortunately did not get the funds they needed to totally pay for all the charity work etc they do. In the local area a large amount of funds are needed to support the local Salvation Army's work in drug rehabilitation, homeless shelters, welfare support etc. People who have put their hands in their pockets and donated to the Bushfire Appeals, Flood Victim Appeals etc cannot necessarily now put large amounts of money into other appeals and so some welfare areas will fall short of target and maybe have to reduce the services they can offer. As part of the Red Shield Appeal I got a certificate of thanks for looking after their kids and the small son of the other officers who have just come down from Papua/New Quinea to start another work in the area for people from that country. Albert is four and very cute and despite his use of pidgin English we managed to communicate well. He just loves Naomi who is close to his age and height and they had lots of fun together. I just love kids and the funny, and sometimes very honest, things they come out with. Talking to kids gives you a very different view of life. I wish we all lived closer so I could help them more than I do now. I called this entry "a mixture of bananas and tigers" because that is what my family is too. Ray had a lot of the tiger in him, in his youth, while he was doing his carpentry apprenticeship, he was an amatuer boxer for a while. Our sons are both tigers, from their boyhood they have spent time looking after the others weaker than themselves. Naomi is too, though at the moment that shows up mostly in her games with her cat. Hopefully later on, like her mother, she will champion the poor and in some capacity speak for those who have no voice. I am a banana, a joker, a person who likes to laugh, my grandchildren Tori and Christopher are both bananas also. Christopher's special subject this term is "hip hop" so to him life is a comic rhyme, and all day long he turns whatever he is doing into silly verse. It is driving his family mad but it is very funny and he had me laughing a lot, something I need to do right now. While I was still on my way home tonight my other son rang me to ask if I can look after his two sons tomorrow as Tori has Open Day in her section of her school and Mum needs to go there. We used to drag the whole family along of course but now there is not that provision where the little ones are allowed to play with the blocks in the corner with their older sisters keeping an eye on them while mother talks to the teachers, life has moved beyond that. So I guess I get to catch up with my grandsons again tomorrow...lucky me eh? So, back home to housework, homework as I study up for the first weekend of my course, and maybe some fun with the little ones...who knows?

Hi all My bags are packed. I can't drop Ray into his accommodation until 10am so I will have time to check, double check, panic etc long before I have to actually go down to Sydney to catch the plane. I am glad Trev is coming down with me as I won't have to tackle the city after dark and we will have a light meal somewhere so I don't die of hunger on the three hour flight. We had a nice weekend, the car boot sale at the church on Saturday, then an afternoon in the garden. It was beautiful weather though the temperature is dropping now so by 5pm you feel the cold air coming in and it is time to come inside for the night. We rarely get below zero now but we still feel the cold as with lots of windows and an open plan house it is hard to heat and I don't really attempt to heat it, I just keep adding layers of clothes until I look a bit like a penguin, except more colorful....lol. Yesterday we did a lot of odd jobs, paid some bills, collected a rebate for one of our specialists apponintments. We stopped late in the morning to have a cup of coffee ( me) hot chocolate ( Ray) at a little cafe we sometimes visit. It is good to allow yourself some extra time so there is that time to sit down and experience that leisurely cuppa and some raisin toast. It is what I expected to do as part of our retirement anyway, so it feels both normal and special to be able to do it. Today we had Grandparents Day over at our grandsons' pre-school. This year it was not a morning tea (government cut-backs, lack of extra funds????) so we stood in the yard and watched the little ones play in the sandpit, paint their hair ( one little girl) balance on balance beams etc. There were about twelve kids but only three sets of grandparents turned up. Ollie didn't really know we were there but Alex was most attentive so I felt it was worthwhile. Our photo was taken with the kids to go on the wall in their sleeping room. Alex even pretended to cry when we had to go so I guess the affection he shows us is really how he feels about us too. We went to craft this afternoon, a small group only today, maybe because it was raining and windy. Tonight we went to our Lions Club dinner, nice food, good company as usual. Again only a little group as many of the seniors are away on those trips up north, a normal part of retirement as you might go to Arizona or Florida, we go north to warmer climates. So we didn't have a guest speaker but one of the members spoke about his life. It is a good way of finding out more about a person and adds somewhat to our fellowship. This time tomorrow night I will be with my northern family. I won't expect any conversation from my daughter as she is NOT a night person. On Thursday morning we will all be scurrying to get ready, to drop the kids at school, to go on to her office. Then it is her Home League and weather permitting we are going about 20 miles firther up the coast for a picnic lunch and a chat and I'm hoping coffee too, so I will renew acquaintances with her group of ladies...and that is all the plans I know of so from then it will be whatever comes up for me to do. Thanks for all the support you give me, I really do appreciate it. I know sometimes we look at life through a very narrow lens, like looking down the wrong end of a telescope, that is what caregiving sometimes feels like. But tomorow night I will soar like an eagle and fly far awy from home...I am looking forward to it.

Bruce it sounds like a nice trip and a good break for you both. It is good to have friends to share th experience with too. Glad you were able to do this. Ray and I occassionally have breakfast at Maccas too! Ray and I get away somewhere occasionally still. We will go to our daughter's in Cairns 1700 miles north of here and enjoy two weeks with her family in the much warmer tropics in July. It wil be a nice mid-winter break. Think of opposite seasons for us here in Australia. Sue.

"Totally cool" to echo Kahy. We live in a large coastal area full of retired people so scooters are used everywhere. You just get used to dodging them in the shopping centres and waiting on them to cross on the pedestrian crossings. It is just good to see so many folk who might have been housebound now able to get out and about. Keep the road rules though, we don't want to see your name in the newspaper headlines! Sue.

I just lost a blog, it expressed perfectly what I wanted to say...it was polished...it was wise...it was so good...and it disappeared into cyberspace. Dash it all!!!! We've had a few good days and a few bad days lately. I wrote a vent of a blog last night...I was so mad with how life is going I just couldn't think about the good things in life at all...so I wrote a blog that expressed all my ugly feelings. I can say I was lucky that it too would not post at all. No-one needs to read all that doom and gloom. Ray has had a few changes in his behaviour lately, he is a bit more argumentative, a bit more restless, has a bit of a problem with eating, what he wants to eat, what he doesn't want to eat. He is slow to get ready to go out although of course he might really enjoy it when he gets there but may not want to go out for various reasons. This is part of it getting colder as winter approaches I guess. This is difficult for me as everything takes him so long when he doesn't want to do something. Trips to buy groceries, to the doctors etc have to take place regardless of what he wants to do so we have had some arguments about that too. Here you pay if you break a specialist's appointment and I don't have the extra money for that. It is all part of the changes having dementia brings. Today I feel so much better about life, owing to a shock, a good talk and some co-incidences that gave me a new look at life. I have been worrying for a few weeks about how I was to get some care for Ray while I do the first weekend of my course in theology at the end of May. Whatever arrangements I made, none seemed to fit the situation. We have a cottage, like a group home, that takes people with dementia for four to seven days to give their caregiver a break, that seemed like a good idea. No they were fully booked in the time I needed. I went to both of the places he has been in respite before. One was booked out till June, the other would clear a space for him but it was for next week and the week after. Well, at such short notice how would I manage that? I said : "No, I will try to find something else" and that was where I was at last night, right down in the dumps thinking poor me, why is everything too little, too late or wrong size, wrong price, wrong colour? This morning I went to see Mum and she was in a wheelchair! Shock, horror! My little Mum who walks round and round and round all day long, in a wheelchair! It seems she had had another fall and so they concluded it was the fault of her socks, so one of the aides put shoes on her feet and now she seemed unable to walk. Well, of course, as she hasn't had shoes on for a couple of years she probably wondered what the heck they were! Luckily I had bought her new socks with the rubberised bottoms for Mothers Day. We put those on her feet , she stood up and away she went! Whew, what a blessing! I went from there to dementia support and sat through the lecture part of the program where the subject was "Routines". Routines are very important in the life of a person with dementia and to most of us if you come to think of it. We all have a routine whether it is how we get up of a morning, how we keep lists etc, all the different parts of our lives have their own routines. To a person with dementia a routine gives them a feeling of security, of being in control. Ray may not know it is Thurday the 14th day of May but he does do know it is shower day, shopping day, get a hot cup of chocolate day. For Ray Thursday is a social day as we see a lot of our acquaintances from church and the other organisations we belong to at the shopping centre, so Thursday is a good day. One of the daughter/caregivers at the meeting today asked the mentor a question I would maybe have asked: "How do I MAKE mum do..." and we all know the answer to that, you can't make a person with dementia do anything they don't want to do. You often can't reason with them but there are other ways. You can offer an incentive ( for Ray a cup of hot chocolate and a couple of cookies is a good reward) find some care for them while you go out, use your regular care time to do the things you have to do, or just make it part of an excursion to somewhere else they do like to go to. He said: "You can't reason with unreasonable people" and isn't that the truth. But you can broach the subject later, maybe ten minutes later in Ray's case....lol. We are taught that if you are dealing with a person with dementia or a brain damaged person you have to be the one to make the compromises. I used to get offended by that at first, like WHY should I be the one to ALWAYS make the concessions!! but it stands to reason that I am the one with the full count of brain cells. I am still able to change unlike Ray who is struggling to make sense of life every day, so I need to be the one to find the solution to the problem. And so I do. I endeavour, each time things change, to find a way around the problem. If Ray is to go on living at home and I am not going to go insane myself while taking care of him, I have to change my thinking. And so I took the two weeks at Reynolds Court but decided not to put Ray into care until Wednesday as we have an appointment on Monday, Grandparents Day at preschool for our grandsons on Tueday and Lions dinner on Tuesday night. Then while I was at the shopping centre I met up with a friend who asked when I was going to see my daughter next. I said I didn't know as I was just putting Ray into respite for a fortnight and so I wouldn't be able to go up to see her on my own and she said: "What is wrong with going now?"So I went to the travel agent, airfares had come down a bit and I will go up next Wednesday for a week. It is the worst week to go as the middle weekend is the Salvation Army Red Shield Appeal. Shirley and her husband Craig are the Captains of the Corps so they will lead the teams. So I will see the grandkids, the cat and the dog and my daughter and son-in-law as they rush in and out of the house. But that doesn't matter, we are family, and I love them and just maybe I can be a help to them. I just realised I can take up the next lot of bracelets and save the $5 postage...that will be a discount on my fares...lol. For my chatroom buddies that means I will not be doing the chat hosting for the next two weeks but I will be thinking of you all. Just be good while I am away.

Hi Bruce Welcome to the wonderful world of blogging. We are a small community compared to the whole of Strokenet but we get to learn a lot about each other and that is great. By reading and adding a comment to what another blogger has written you can reach out around the world, as I am doing sitting here on the east coast of Australia typing this to you. I look forward top reading your blogs and getting to know you better. Sue.

Ruth, you enjoy your miracle! Make the most of every moment of Dick's mental rehabilitation. If it lasts that is wonderful, if not you have had those magic moments. And the freeedom to escape to the shops alone and to know that Dick has gone outside of his own initiative, how good is that! I usually tell Ray it is time to go outside but sometimes I look around and he is walking towards the door with his word puzzle book under one arm and I think "GREAT"! Here now doctors have to eliminate infections that cause confusion and do multiple mental tests before they can diagnose dementia. They also can change medications if they think there is a conflict and order anti-dpressants and treatment for vitamin D deficincy. So sometimes there can be a form of confusion and irritability that mimics dementia, it can be a medical rather than a mental problem. Ray has times when he sinks into a poor way of handling life and I worry that it will be permanent but something comes along and he snaps out of it again. I think it is partly boredom and partly a lack of energy which causes him to take the easy way out. I find it is like him just sitting in the chair all day is easier for him than doing his exercises but doing the exercises seems to make him walk better, improve his posture etc. I am glad Dick is back on the computer playing strategy games, that he is using the farming game to stimuate his brain and regain some interest in life. And that you have been able to join him in a shared inteerest again. Have a grest week. (((Hugs))) from Sue.

The email I sent out had some results, I had a few emails with updates, some phone calls and one friend sent a long letter with some photos so Ray gets to read that too. I know everyone is busy these days, often working or minding grandkids or some of our friends looking after elderly parents etc. I just want desparately to keep in touch with some of them. Maybe some people don't contact because they think if they tell me their troubles they will be imposing on me, for instance I found from one of the emails that one cousins's son had been in a car accident recently. We have hearts big enouh to care for those outside our immediate family, and as the saying goes: "A sorrow shared is a sorrow halved, a joy shared is a joy doubled". Thanks, concerned friends, for your continuing support and love from us and our family. Sue.

I've seen a lot of people launch boats from boat ramps but never one quite as you describe it. I've seen a lot of arguments, boats slipping sideways, some floating away! Ray was with Fisheries and Wildlife for 14 years so I spent a lot of time sitting on shore with the kids waiting for daddy to come in, so that's where I get my expertise...lol. Congratulate your daughter on her success, no getting away from it you are a talented family. Congratulations to you and Sam on your fishing prowess too, 30 fish yesterday, 24 today is a good bag for sure. Sue.

Today I took Ray to the neurologist, he is the best known in our area and has been on Ray's case since the 1990 stroke so knows his history. We see him every six months as he hold a watching brief as do several other specialists. This way if Ray goes to hospital I can ask for them to be contacted about anything in their area of expertise. It is comforting to know that he will do that if asked. As usual we had the preliminary questions, I always supply some initial information like when Ray had the last fall and list any changes I have noticed in Ray since the last visit. I try to word it all so Ray doeesn't feel embarrassed and so does the neuro, we don't talk about BMs etc, he just asks me have I increased my wash days or something similar. Ray seems oblivious to most of the conversation, instead he studies the posters on the walls. Today I asked the specialist if he was doing any new drug trials, he said he was including being excited about a study that looks as if it could produce a medication of the future for prevention of some issues with dementia. I hadn't heard anything about this new medication but it is trial only so I guess if the trials are successful we will hear when? ten years down the track?. There is also talk of a vaccine to be used on close family members where families have histories of dementia. This will maybe prevent some family members who are at high risk from getting the disease. Wow, what a breakthrough that would be! But that too is in the early stages. The doctor added: "Sadly, nothing for Ray in the present trials." After ten years post stroke and three years since the diagnosis of dementia I am still searching for that magic bullet, the one that will reverse the stroke damage and let the old Ray shine through once more. I don't think I am being selfish when I wish life was so different for us, I think I am just yearning for another go at the nomal life, the good life of retirement adventure we used to dream was ahead of us. Silly in one way as even if there was a "cure" found today, five or so years of safety trials etc would make it too late for Ray. But still I wish and dream and google all possibe breakthroughs, new med descriptions etc, hoping to find a chemical solution. One piece of good news, on the advice of a friend I sent out an email to 20 or so people on my list asking them to write, or email or phone so Ray would have some contact with them. He is not good on the phone but he does love to get a call. The email said in part: I am writing this because a friend asked me what I miss most and I said "contact with friends" and she suggested I just contact my friends and express a need, for an email, a phone call, whatever seems appropriate. So this is it, my call for support. So just email, phone or visit, whatever it is you usually do. Because of the dementia plus his other physical problems Ray doesn't have the ability to process thought the way he used to. For instance he tells our 9 year old grandson Christopher the same story over and over about how he used to live behind Spencer school and if he missed a days school the teacher would come up at lunchtime to find out if he was sick. It is always the same story and I know Christopher must get tired of listening to it but he never says more than: "Yes Pa." at the end of the story. Ray does enjoy the phone call and speaking to his grandson Christopher, he enjoys it very much. If you speak to Ray on the phone he will ask how you are, how the family is, how your wife is - whether you have one or not. He will listen if you tell him a story and usually make the right comments, then he will say: "I'll hand you over to Sue now." I am just so pleased when people ring him. It keeps him in the loop - and we all need that." Well, we got three phone calls tonight. I talked to the callers, Ray talked to them, Ray even managed ten minutes on one of the calls. Our son Trevor said: "Looks like you got a month's worth of calls in one night Dad." and Ray laughed and said: "Yes, it does." that is the first time I have seen him laugh in genuine pleasure for some time. I guess my point is that it actually doesn't take a lot to make life worthwile, a phone call will do it. So maybe we need to reach out to others more often, particularly friends whose circumstances, like ours, are less than they would have hoped for.

Hey Jan , that is some prayer list but I will add them to mine too. I do pray for the members here, different people at different times when I feel they need it most, and hope they feel the warmth of God's love for them. Boy, we all need that experience. I am so impressed with your progress too. You are a really special person in a lot of different ways. For the way you reach out to others, for the concern you have for your caregiver and especially for your love for your friends and all who form part of your community. I have a very wise Christian friend who says we are all part of a small community of concern and I see from your post what he means by that. So thank you for that insight too. Wayne would be most welcome in chat, I am sure he would find us both wacky and wonderful women, and men too of course. I do understand his concern for you being half a mile away but as each trip proves uneventful his concern will lessen and he will allow himself to enjoy his "free time" and relax and KNOW that God has you in his care, wherever you are. (((Hugs))) from Sue.

Hey Ruth, your blog made me feel so good! I really like your attitude and hope you can continue to feel the same way. I found with Mum that I have developed the same philosophy. I deal with Mum visit by visit, we have good times and not so good times, whatever she is doing I do it too. It IS fun to be with her as she is a unique human being. I am not as good with Ray but I find what I say is how I fee l so I call him pet names, tell him he is good, act towards him as I would like others to act towards me. I am not sure I agree with you about the Depends, sometimes that smell overpowers my good intentions. But I do know what you mean, Ray is my dearly beloved husband and I need to act towards him in the best way. Sue.

Karen, bullying and belittling in the cyber world is as nasty and ugly as in real life. It is like the playground bullies at school, with their comments aimed at humiliating you. Stay away from it. Blog here where people like you and want to encourage you. Congratulations on starting your blog, now set it up to share with us how you are, what you are doing, what your hopes and dreams are for the future. There is a whole world-wide audeince out here, literally as I am sitting on the eastern coastline of Australia typing this to you right now! You have a lot going for you. All of the stroke survivors here deserve credit for what they have been through. You are no exception. Forget the negatives in life and live for the positives. You don't need to worry about what others think who do not really know you. You know how far you have come. My advice is to put the past behind you and look to the future. (((Hugs))) from Sue.

Like most caregivers I suspect I often fail to thank my spouse for going that extra mile, for doing something that benefits me more than it benefits him and for being tolerant in the face of me wanting him to do something that formerly he wouldn't have had to be involved in. Prior to the 1999 strokes that disabled Ray and retired me to look after him Ray and I lived very seperate lives. We lived under the same roof of course, we shared the resonsibilities of running a house and raising a family but we each had our own activities. Ray had always been in a service club for maybe twenty years or so and was in our local Lions Club. He went off to dinner meetings twice a month and also attended most of the service projects on weekends. He was also a board member and held one of the positions connected with one of the hands-on service projects. He was in training to be President in a couple of years time. I was simply his Lions Lady and turned up at dinners where partners were invited to attend with the obligatory plate of sandwiches or savouries or cake. Just one of many charming wives that attended. We both went to church but Ray went on Sundays to our "old church" and I worked two days a week plus five or so hours on Sundays in a parish closer to where I worked at my public service job. By then I was part-time working Wednesday to Friday only. When Ray had the strokes I had been doing the parish work for three years. I finished my Diploma in Theology in 1995, went back to work full-time and then in 1996 started the three days paid work, two days voluntary work in the parish. I got a lot of satisfaction out of teaching kids religion in schools, running women's groups, helping with Kid's Club and Sunday School when required and doing so many things in the way a paid assistant does but actually as an unpaid worker. Churches can't always afford an extra paid worker and so unpaid voluntary people who have had good training make up for the deficit. I was one of many but I was part-time for two days every week but others ran particular organisations and groups within the church structure. We also belonged to several other organisations so our life was pretty full. Our childen were young adults, two recently married and living close by, one settled a bit further afield but with a good job and a partner. All were independent and busy. They didn't visit us a lot but were happy to just keep us involved in their lives. I guess that made us a pretty average family. Of course we had lots of plans, travel, maybe a move further north, certainly more overseas travel. We also helped the kids with any project they were working on. As a carpenter Ray had always been "Mr Fixit" for friends, neighbours and anyone else who needed his help. He was always willing to lend a helping hand, a person who was very generous with his time. But he was still plagued by that pesky fatigue issue so not as busy with helping out as prior to the 1990 stroke. Ray had had the stroke in 1990 but after the six months of rehabilitation and his return to work life resumed it's pace. Mostly it was the same life as pre-stroke except for the fatigue issues - Ray worked full time but at home he was so tired and our social life etc suffered a bit because of that but we were coping very well. We never imagined that there would be other health issues ahead. We had planned some overseas holidays. Ray wanted to see Australia first but I was determined to take him to see England, I had come from there as a migrant child in 1955. So in 1994 and 1998 we had two six week holidays, in 1994 we had a two week coach tour on the Continent as well as four weeks catching up with as many of my relatives in England as we could. In 1998 we went over for a wedding of a girlfriend's son but also managed to do most of southern England, Ireland and Wales We didn't have any worries about Ray's health, he was "over it" right? And all that changed when he had stroke number two on 19th April 1999 and stroke number three on 10th May 1999. Life changed so dramatically for both of us. From then on we were together, I resigned from my job and came back to the parish Ray had continued in. I did some work there but just a small percentage of what I had been able to do in my last parish. Ray, his rehabilitaion, recovery and return to as good a life as we could manage was my priority and that is the way it had to be. It never occurred to me that I had any other choices. I also took on the care of my parents, bringing Dad and Mum to stay with me permanently in Septemebr 1999. Dad had terminal cancer and died four months later. Mum I kept with me for over two years. The ups and downs of that story would take a whole book, not a few lines so suffice to say she has been in her room in her Dementia Lodge now for more than seven years. The doctor said in May 2001 when Ray had stroke number four that it was time for me to place her in care and he was right, so in September that year I did so. A lot of the years in between then and now I have documented in my blogs. So why am I grateful to Ray today? It was the Orientation day for my new course today so we went just over an hour north of here to meet up with my 50 or so fellow students and learn what we had let ourselves in for. Of course the program is nothing like the prospectus but I think it is manageable. I have done study before so I know how to read a text, make notes, regurgitate it all in essay form. It will be a struggle time-wise but with careful management of my "free" time I should do okay. I am not heading for a credit or a distinction, just a pass will do fine. These days I don't have anything to prove. By a huge co-incidence Jeff, Ray's main carer/shower nurse is also on the same course. We knew he was a church attender in the same denomination as us but didn't know he was also a preacher. Apparently his minister asked him to do the course as a refresher as like me he had not studied for many years. So it was nice to see him today and we had lunch together and had a good talk. I am hoping that us being on the same course does not make for conflict in any future events, I don't think it should. It can be awkward sharing in groups with someone who knows you from another aspect of your life so I will be very discreet if Jeff is in the same group. It was a long day and by mid-afternoon Ray was nodding off in his wheelchair. I don't think much of the coursework information we were given today was of much interest to him although a couple of the guest speakers were quite articulate and humorous in their approach to their subject so he did join in the laughter - when it woke him up. Ray was amiable and smiled a lot, he acknowledged those who bothered to come over and talk to the "guy in the wheelchair". On the whole he seemed happy just to be with a group of people, it is not always that way with Ray now and I was very grateful. Tonight after dinner and before he went to get ready for bed I thanked him for being there for me, for participating in something I wanted to do even though he needn't have been invoved. He said it was a pleasure and I was welcome. It was a very gracious reply. Thanks Ray.

I agree, a real warrior. Thanks for being an inspiration to others. Now...home...and try not to let the vision fade. Sue.

You are a gardening genius, and I would so love to hug all your friends for helping and supporting you. The butterflies will love it too, no doubt about that. You have worked so hard and we all expect you to post pictures in the gallery of the gardens when they are all fully in bloom. If you don't know how I am sure someone here can give you instructions. Thank you, thank you for your so enjoyable blogs. (((Hugs))) from Sue.

Sherri, I think you have done so well. It has been a mammoth task and now you are getting tired. Ray has had one or two PTs who have been stingy with compliments and he found that difficult. It is human nature to want some praise for giving it your best shot. But I would include this PTs lack of appropriate positive encouragement in your report as Donna said. And also the generalisms about what strokers "don't want to do" - find difficult to do would be a better rendition. You are a real inspiration and I am sure others are benefitting from all you have written about this therapy.Good on you for all you have done. Sue.

Jeannie, life is full of ups and downs is it not? We seem to have to battle to keep what should be ours by rights. I guess that is what keeps us going. Sue.

You know that saying: "a change is as good as a holiday"? Well whoever said that obviously had never lived the caregivers' life. To the caregiver a lack of change is a relaxed life. No change = good, change = bad. So why do I think I need to make some changes in my life? For one thing I know a rut is like a grave just not as deep. We form a rut in our lives when we do the same thing day after day. So when I set up my nice routine, where I know I can cope, know I can do the things that Ray can manage, where the sun shines and we go outside, the rain falls and we stay inside, that is good, BUT it is a rut. It is not really living, it lacks stimulation, new experiences, new ways of looking at situations. So I live but I don't grow in wisdom etc. I have just signed up to do a twelve months course - a very elementary one - on theology. Our present Bishop considers it a minimum requirement for those doing pastoral care in the church. This Certificate level course is only about one third of what I did in my Diploma in Theology which I finished in 1995. But 1995 is almost fifteen years ago so I guess you could say I have no current qualifications. So I signed up. I need it if I am ever going to go back to the life I gave up when Ray had the strokes in 1999. Then I was working three days in the public service, two days in a voluntary capacity in a parish, doing pastoral visits, teaching in kid's church etc. To do that now I need more qualifications or at least a refreshment of my old ones. When do I plan to use these qualifications? I don't plan on using them at all. The additional piece of paper will come in handy for future employment as an employer needs to know you are still capable of learning, or that is the way it is here. So telling someone you haven't been in paid employment for ten years is not likely to impress and another piece of paper might. Who knows what the future will bring? This also raises another question: Should I have instead enrolled in something that would give me more "employment entry" qualifications? Probably not as I can miss some parts of this course and catch up later if I need to so am not as tied down as I might be to other courses. I am able to get some weekend Daycare which is partly government funded to do the course BUT the venue is the Dementia Lodge where Mum is. I am not sure this is a good solution but only time will tell. Ray may be happy to be there for seven hours on a Saturday ( nine in all) while I am doing to course or he may not. Either way I need to go ahead and do the course. I will think of it as part of my "Sue time". The other change I have been looking at has to do with this house. I really do need an ensuite toilet in our bedroom. It would make life so much easier but our plumbing would not cope with it. So I need to either spend a great deal of money setting it up or move. Moving in the present situation would not be a good idea. Ray has a great love for this house which he mostly built. It is his safe place, his small heaven on earth. The verandah, the bedroom, now the shower room set up especially for him are all part of his security. If we moved I think the anxiety that would cause would accelerate his dementia, literally "drive him mad". So I am very hesitant to sell. There are so many decisions to make, just in everyday life. Think of your morning routine and how many decisions you make just in getting up and getting dressed and having breakfast. Hundreds of tiny decisions - shirt or sweater, long sleeves or short sleeves, long or short pants, colour of socks, shoes or slippers and so on. I make most of them for Ray. He now doesn't process the information needed to make even small decisions so I make them for him. I set out his clothes, I prepare his breakfast, he sits down and eats it. I may ask if he'd like a cup of tea or a glass of juice but mostly I just give him what I am drinking. It seems easier that way. I hope in doing so I am not over-riding decisions he would have made - if he was capable that is. So in trying to make decisions I can't ask Ray, all I can do is take into consideration what he would have wanted to do, based on my forty plus years of knowing him. Sometimes that seems a huge responsibility.

Clark, what a moving tribute to your friend. We all have remarkable people come into our lives and we should appreciate them for that. Sad though to bury a good friend, sorry that it happened that way. Welcome back to the blogworld, hope to catch up with more of what is happening in your life in future blogs. Sue.

Jeannie, I have heard of disabled children's groups that do gardening as therapy but not adult groups. It seesm like a great idea to get people away from sitting in front of the television and the computer and out in the fresh air. I've just planted some bulbs for next spring ( we are in fall here in Australia) and I hope that I will have a nice display of daffodils and jonquils to look forward to. I have to think of some more inside hobbies to keep me busy and amused during the winter to come though. Ray is not good outside if it is raining and if I stay inside too much I go stir crazy so I have to keep busy. Sue.

Yes, it is one day at a time here as well. Ray doesn't have the lightbulb moments, some days he talks a little, some days he hardly talks at all. It is just accepting watever the day brings as "normal". I'm glad you have the health aide ( I call mine a shower nurse as that is what he does). It is easier to be able to walk away for a while and know that some things are now someone else's job. I am glad your world is coming right way up again. Long may it remain that way. (((Hugs))) from Sue.

Janine, one year on is a good milestone. It is a time for getting comfortable with the life you have now which you more or less seem to have done. Ray, like Larry, likes a quiet routine life and doesn't seem to want much now. Such a contrast to ten years ago for us. If you are ever down come on here and start reading, reading, reading until you feel better. That has been a strategy that works for me. My son says I am hooked on Strokenet and in a lot of ways it is true. I want to know what others in my "family" are going through. So it is great when you post or any of my other favourite people. For me my language hit is hearing my Mum's voice as she hasn't spoken much for the past two years. Her loss of speech is caused by Frontal Lobe Dementia/Alzheimers which has robbed her of her thought processes etc but she still says : "Don't!" if I tickle her ribs. Before her dementia was so severe we used to chat together all the time and I really miss that. It is like she is autistic now, so shut-in and introverted. Anyway, I am glad you and Larry are settled and you are re-building your life again. Sue.