swilkinson

Ten years ago today I was sitting in Bendigo Hospital about 800 miles from home. In the bed I sat beside was my seriously ill husband Ray who had had a major stroke and was now completely paralyzed down his left side, arm and leg now useless. He could not eat without assistance and his words were slurred and almost unintelligible. It was a bitter end to what was supposed to be a ten day holiday. We had taken our time driving down to Victoria from New South Wales. We had visited friends on the way and had a great time catching up with them. There had been a lot of driving for Ray as we had also gone to the north west corner of Victoria to visit a couple I was friendly with before coming back to Bendigo. Then came the four days of the convention which had been a busy and exciting time. Like the convention we have just held locally it was a get-together for folk from all over Australia who only see each other maybe every second year but have in common the fact that all the men had once belonged to a young men's service organisation called Apex. They had all been kicked out (retired) from Apex at 40 ( they had to leave when they turned 40) and now just treated the annual convention of Apex 40 as a get-together, a time to laugh over old memories and make or continue friendships. As soon as the convention came to an end we were heading off home and back to work. That never happened. Ray finished up being six weeks in Bendigo as he had a second stroke there on May 10th, pulmonary embolisms, stomach ulcers, arterial fibrillation etc etc. The hospital up here couldn't accept him until he was safe to travel and that took a while. I lived for six weeks in a building that had once housed trainee nurses, the rent was cheap and I was one block away from where Ray was so I spent most days with him. I crochetted enough squares to make up three rugs when I got home so my fingers were busy while I watched him sleep of an afternoon. I asked questions, compared treatments, watched the physios and learned as much as I could about strokes and what it meant to be a stroke survivor. Our children flew down to be with us, each for a few days, even friends from four hours away visited and we had an especially good friend who was also the local Bishop of the Anglican church who together with his wife were our siupport team. Thank the Lord for such good steady friends. And we had support from the Apex40 club, the hospital staff and people who came into our lifes just for a short time but filled a much needed role as friends and counsellors. I had other wives also staying at the ex-nurses home to talk to at the end of each long day. After six weeks I drove home and Ray flew home by air ambulance and was taken to Woy Woy Rehabilitation Unit where he spent the next three months. I count as the anniversary of my caregiver role the 3rd of September 1999, the day he came home and became my full-time responsibility. Most of you, if you have read these blogs have heard most of the rest of our journey as I refer frequently in posts and blogs to what has been happening in our lives over the ten years. It has not been an easy life for either of us but it has had it's joys as well as it's sorrows. On the whole I am glad we have managed to stay together for the 40 years of our married life. It is, after all, our only reality. Now we feel as if Ray has well outlasted the early predictions from doctors at the time of his stroke, three to five years they said when I asked how long they saw his future as being. He has surpassed that prediction by many years. Of course he has had a lot of other medical problems too. A broken hip in 2000, the result of a fall upon slate tiles, the 2001 and 2005 strokes, the broken pelvis in 2007. He has also had many short periods in hospital. Ray has many medical conditions, some caused by the diabetes which he learned about in 1990 after his first stroke. Because of his lack of mobility and his inability to do more than exercises for flexibility and partly because of increasing years he now has osteoporosis. And since the 2005 stroke vascular dementia also. But he is still able to walk short distance, to talk and sustain interaction with old friends, to go out in the car with me, to socialise to a certain extent and to enjoy life. Ray ignores what he cannot fix and I think that is what stops him from being depressed. The changes stroke made to our lives were radical. I had to leave work, first of all to be Ray's cheerleader, then to be his full-time caregiver. I had to give up my voluntary work as a part-time unpaid pastoral assistant at a local Anglican church. I had exercised a ministry there after completing my Diploma in Theology in 1995, it was my aim to be a hospital chaplain but that never eventuated. I did three days paid work in the public service and two days unpaid work in the parish. Ray had worked as a maintenance carpenter in a mental hospital for fourteen years so had a lot of holiday pay, sick leave etc coming to him and did not officially retire until December 1999. But he went back only to hand over his keys, a very sad day for him. He had survived the 1990 stroke and gone back to work after six months of rehabilitation etc but this time the retirement was permanent. I have reached an acceptance of how my life is as a caregiver. I still vent about the things I cannot fix. Unlike Ray I am never content to ignore the things that bug me. I work hard to look after Ray. And of course as I still have my mum, who I visit twice a week. It is seven years now since she went into a dementia specific lodge - Nareen Lodge. It is a good place, run by a staff of good people. Mum's care has been excellent. She has falls but then she cannot be wrapped in cotton wool or any other substance that would cushion her falls. The internal walking track which she walks many times each day gives her an illusion of freedom and she is well looked after and safe there. I don't know what the future holds for us and frankly I don't want to know. I have enough trouble just doing life day by day. I will go on caring for Ray as long as I can. I pray I stay well so that I can do so. We said : till death us do part and in my opinion that is all there is to it. But that is today's feeling and tomorrow's may be different.

Leah, I do so admire you for your honesty and integrity. I know going back to revisit that time just after your stroke when you were on a knife's edge must have been so hard for you but you stuck with the program and I was happy to see finished with gratitude and thankulness for your recovery. What a great attitude! I know from reading your blogs that like me you have accepotance problms but you always try to be upbeat. Thank you for writing of your experiences, I hope one day you may be able to make them public. I know others would find so much to relate to in what you have experienced. I'm glad you have been able to get back to chat. I find chatting and blogging very therapeuitc. It is good to know that behind the names are so many great and kind human beings from so many parts of the USA and indeed world wide. As a community we have so much to share, so much to give. Hope you have a wonderful vacation. (((Hugs))) from Sue.

Wow, pretty lady, you have done so much already and are yearning for more. I am so impressed with your attitude. I agree - don't be defined by your disabilities, demand respect for your abilities! Sue.

Wow, Sherri! You are doing the 100% effort on this course. It must be very tiring. But I am glad you got the opportunity to try. If it fixes any of your past deficits and gives you more confidence that will be great! I laughed at the image of everyone walking on their heels, bet there were some tired hamstrings next morning. Sue.

WARNING!! THIS IS A VENT!! I can't believe that so much has happened in a couple of days since Ray got home. We have had a fall, some arguments, lots of "accidents" and this evening an argument about shaving!! Ray has used an electric shaver solely for the past two years and when I asked him to use it tonight he said: "I don't use this. I shave at the sink with a razor." That was really out of left field so I dropped the subject and will get Jeff to shave him tomorrow morning. Safer than giving me an ordinary razor when I am mad with him! The respite is great, a time to relax, unwind, enjoy just being me for a while. The down-side is the homecoming and the settling back in. I have blogged on this a lot so you have heard my views on this. Some of you have experienced it when the one you care for comes home from hospital after a short stay and drives you mad for the first week or so until you get into a pattern of working together again. That is if you can still work together. Ray has always had what we here call "wife deafness". That means if someone else asks Ray to do something, fine, he does it. If I ask he either argues the point or simply refuses to do it, or ignores whatever I have said and does it his way. This leads to quite a few difficulties. He won't do his exercises for me. Luckily he does them with the shower nurses but on Tuesday we had a little person we only have occassionally. Ray explained to her he doesn't have to do the exercises today and when I insisted did them very half-heartedly. He doesn't seem to know that he is doing them to maintain flexibility, he sees it as a chore, an imposition that he really can't be bothered with. I am envious of those whose survivor makes good progress because they try so hard. Ray has lacked the motivation to do the exercises all along and will not do them unless he is with a physio or with others he is trying to impress. Because Ray had not done much exercise since he went into respite his legs have got much weaker. The fall was on the front path outside on his way to the Daycare bus on Tuesday morning. He was with a new worker who was obviously too far back as he didn't even attempt to slow Ray's fall. Ray was really shaken by the fall so the bus driver suggested they do the rest of the run and come back for Ray which is what they did. Forty minutes later when they returned he was feeling okay and I had patched up all the cuts, grazes and abrasions and he was able to go to Daycare. I think the incident shook me up as much as it did him. I always ask myself: was this a simple stumble, a precursor to another stroke, a fit or TIA? If Ray seems unhurt or unaffected I just feel glad and let things be. I am reminding Ray of what he has to do minute by minute again. It is very tiring and I know it is the dementia and not Ray but oh heck! I wish it would end. He was like a sulky child today. Nothing seemed to please him so I let him spend most of the day on the verandah. I had Trevor home so he made Ray his morning cup of tea and gave him some cookies as a treat. Even when I feel he doesn't "deserve" a treat I give him one - it is the disease remember? I keep tellling myself that over an over. I was nearly an hour late going into my caregiver chat today. I had a visit from a woman my age who for a long time was my best friend . We became best friends at eight years of age. We lived opposite one another and went to school together. We became friends and our parents became friends, a happy co-incidence. She was an after thought after three boys and so her parents used to take me out with her as a companion. Surprisingly two girls were a lot less trouble than one. Her father used to call us "the terrible twins". We have been in and out of touch many times over the years as she and her family and me and mine have moved from place to place. We each raised three kids two boys and a girl, though my girl was first and hers last. When Ray and I came back here 26 years ago I hoped that I would be able to get back in touch with school friends and friends from my childhood but in many cases that didn't happen. Most of my girlhood friends were married by then and a lot had moved away and she was no longer living here. But it is wonderful when we see each other even for a few hours, so many shared memories. She was on the way north after visiting one of her children. She expressed the hope that we will see each other more regularly...we can only hope eh? Despite being so late it was good that some caregivers were still in chat and I was able to go on chatting for quite a while. Thank you Bonnie for being my substitute and being so understanding. No, I do not like letting people down, particularly other caregivers but sometimes I need to put people in real time in the picture too. And visits from old friends are a rare event in our lives now. I was reminded of all the people we once associated with, for now I see that is what they were, fellow workers, colleagues, business associates rather than friends. I need to hang on to the old friends I have here in real time as that number is diminishing. Making new friends as you all know is harder when your partner has physical and mental disabilities. I will go on looking after Ray for as long as I can. I have been on a couple of good Dementia sites lately and read of the anxiety and sleepless nights that occur when the time to place loved ones in full-time care is imminent. I don't know what I will be like when that happens. I shudder at the thought. And yet a small voice of wisdom, a tiny voice in the back of my mind, reminds me I am just one person, not superwoman and need to be aware that one day Ray will need more care than I can give him. I "know" it with my mind but my heart threatens to break at the mere thought. I have a lot of sympathy for all those who care for someone, partner, child or parent with severe disabilities. I have a lot of respect for their sacrifice and committment. I am not sure how I would handle a severely disabled spouse or child. Ray at this stage is still fairly easy to handle, he is still mobile, still walks, talks etc. He is back off thickened liquids now and seems to be able to manage most foods as long as they are cut up into tiny pieces. Life could be a lot more difficult I know so don't know why I can't just "appreciate" that fact. But I am human eh?

Ray is back home again. I went and picked him up this morning. The nurse who signed off on his respite said he had been no trouble and they had loved having him. I got her to look at the "incident report" and she said he hadn't had any falls etc. No good asking Ray as he would always say "no". But he seems okay. Of course by lunchtime he had already had one change as he didn't make it all the way to the toilet because of the walk in from the verandah which is I guess longer than he has been walking from the chair to the ensuite in his bedroom. That is possibly the only execise he has had in the past fortnight. Only time will tell if this will be our "new normal". It was good to have last week to myslf. I didn't go to the movies or have a swim. I did sleep a little later some mornings and I actually got to sleep right through the night which is rare when Ray is home. I didn't do all I had planned with the house and garden as we did have some rainy days. I am reluctant to say it but the dust bunnies are still happy in their burrows under the bed in the spare room. I did do some thinking about life, read a couple of novels, did some extra phoning of friends and tidied out some drawers. I always think a whole week to myself will somehow translate into a sparkling immaculate house but that doesn't happen. C'est la vie! I have been back on chat and posting again. My computer is down again, it was only a patched job anyway and so I have been using Trev's again. He has been looking for work, he did a friends carpets last week and this weekend did some welding on his old truck. He is quite a jack-of-all trades now, he can fix computers, do some mechanical work, a bit of building etc. I hope he can find a job that uses some of those skills. It is a falling job market here though. No real reason as our stock market is recovering and we are still all buying goods,eating etc. I hope this depresssion/recession, whatever it is doesn't last too long. I sat in church yesterday and listened to the sermon, I was hearing it for the second time as it was the same as Saturday night's sermon. In the Saturday night service we renew our baptismal vows and light the "new fire". It is service with a lot of singing and yet is very prayerful too. It is the last of the reflective services. Easter Sunday service is all alleluias and bouncy music. On Saturday night with the candles burning etc it was good to just sit and relax and listen. It is not something I get to do often, just listen, as mostly I have to be aware of other things happening about the place. The theme of the sermon was unfinished business and it was pointed out that in the Scriptures there are a lot of stories without endings. In many cases we don't know what happened, we can draw conclusions and make a guess or we can just accept that life is full of uneasy endings and events where we will have to be content not to know what happened next. We were reminded that in our own lives we have many regrets about all those things we ought to have done and didn't, all our good intentions that somehow didn't turn out the way we had planned, all the tasks we had had to walk away from before they were completed. I could relate a lot to that. How many plans I have made that I have never been able to put into action because our circumstances have changed. That is where I am a lot of the time now. The conclusion was that as human beings we have to learn to live with the unsatisfactory endings and the unfinished business in our lives. That we have to live with our current realities and we don't live in happy-ever-after-land. It may be difficult not to be abe to control events and turn everything into a happy ending but it is part and parcel of the life we lead. I do so agree with that, I felt as if the sermon was being preached for me. One day I might even let it sink so far into my sub-conscience that I actually do see that my controlling life isn't an option here. It is again about accepting life as it is and doing the best I can within it's limitations. I thought that in my later years I would be a little old lady who was full of wit and wisdom, who had most of life sussed out. It seems I, like everyone else, am still on a learning curve. I don't have all the answers and I have yet to hear all the questions. Ten years of caregiving has taken me down a path less travelled but it is by no means a path that leads to a quiet, safe place. It is a road full of potholes and sharp corners and steep rises and still full of unexplored dead ends that I will take and have to find my way through. This has been a lovely quiet week and I know the ones ahead now Ray is home will not be. I know he comes back home with all the problems he went with plus some which will eventuate as we go along. If God doesn't give me more than I can handle I am okay. I can handle a lot of the problems as I go along, sometimes after a time of self-pity and a feeling of helplessness, and I often seek a "happy-ever-after" ending where I know one is not possible. But I come from tough stock and eventually work things out. Like others here I just wish from time to time that trials came less frequently and more of Ray's and my life was lived in the pleasant valleys of prosperity and peace.

Wow, Ruth, I read both of your blogs and it all seems so heavy! But I know that is your reality right now. I wish you could find that perfect place where you would be happy for Dick to live, be cared for the way you would care for him etc. With Mum I cared for her for two years and finally found Nareen Lodge which is dementia specific so they understand her needs and the progress of the disease. It is not the best facility but it is the best available here. I know from my experiences with Mum and respite for Ray that it is all about accepting what there IS available and making the best choice you can and then living without regret. So my advice is look around, check out what is available and then when you run out of energy place him in that facility if you can. I am trialing a new place for Ray right now, it is a combined high and low care facility where everyone has their own rooms, they have nurses trained in dementia care and nurses who specialise in physical care so the best of both worlds. Because Ray has physical and mental needs the dementia lodge where my mum is is not really the place for him. If you can get help from the Alzheimers Association I think you might be able to get more of an idea of what is available. Three hours of health aide assistance is fine but as you say you do miss just being able to jump in the car etc and get away for a while. Freedom goes when dementia comes into your life. I have some freedom, but just in how I choose to organize the schedule, not to come and go as I please. My answer is respite, a time when I can sleep through the night without the 3am "change" and don't have a little voice calling to pick up something which is well within his reach. Few among our family and friends will understand what we are going through but like you I will take on the burden for as long as I can. We have been together so long, but I feel as if I no longer have the man that was once my husband, lover friend...that part of Ray has gone. I am left looking after the beloved body and sweet smile of a man who was once so much more. But so are many others and I salute them all. (((Hugs))) from Sue.

A friend of mine puts her ID between her teeth and shakes her head under the laser scanner, that must look a sight too but it works! In every situation there is eventualy a solution. I am glad you are blogging again, there are lots of insights in your blogs for caregivers to be aware of. It is much appreciated. (((Hugs))) from Sue.

Jan, this is the BEST plan and I enjoyed reading your take on it. I enjoyed my time in chat and am so happy to be in the plan to Bust Sammie Out. Laughter and frivolity is what we all need when the going gets tough and whatever we can do to help others out of that dark prison of uncertainty and despair is worth doing. I am so glad you are hosting here. (((hugs))) from Sue.

Usually when Ray is in respite care I see him once a week. I went yesterday to see if he had sufficient clothes etc and he was just fine. He has a nice large airy room and after he and I had talked a while we had coffee at "his" table and the three ladies he shares it with are permanent residents and seemed really nice. Trev and I went again today as we changed back off daylight saving last night and I was worried that his watch would be wrong. It was fine, he said the nurse changed it at breakfast time. So we had a short visit and then went off to the shops. One of the nurses there turns out to be a friend from a long time ago as her daughter was a friend of my daughter, that is a nice coincidence as I know she will give Ray some extra attention now. My five days away turned out to be in a period of rain, nine inches over four days to be precise. I am sure we would have been able to see the dolphins on the Dolphin Watch boat trip if it had not been pouring with rain, the koala spotting walk was cancelled - due to rain etc. There was still a couple of excursions I enjoyed like the Fighter Plane Museum at Williamtown and the half day in Hunter Valley Gardens when it threatened to rain but didn't. The roses were somewhat bowed down but must have been magnificent last week and I enjoyed the Chinese, Japanese, formal english, storybook gardens etc. Of the 8 miles of pathways I probably did about half so I got my exercise in too. I was bus marshall on Thursday and everyone obediently got back on the bus when asked them to do so. I was pleased with them all and thanked them for their co-operation. In the evenings we had entertainment - my team didn't win the trivia so missed out on the Easter eggs but did come up with a lot of silly answers that kept us laughing. I took part in one of those "how to host a Murder" plays and after round three was convinced I was the murderess but luckily someone else had an early opportunity to kill the victim and I came through with my reputation intact. Whew! It was set at a high school reunion and as our weekend theme had been "Happy Days" I had a similar outfit as the valedictorian of Rock'n'Roley High attending the fifth year reunion. Everyone said it was "type casting" and I didn't get a Logie but we did get a standing ovation ( well they were all off to get another drink I think) so it was worth all the stress. We had a mixture of ages on board for our post-rort tour, and people from all over Australia plus a party of six from New Zealand but there were not a lot of complaints. Most agreed that the food was excellent and the only real disappointment was the rain. I just enjoyed being away from home for a few days. The company of other women is something I miss, also just that kind of conversation that flows and eddies around a lot of subjects over a couple of hours. You only get that with people you know. Being alone wasn't a problem as I got invitd to sit at various tables so got to know a lot of other people better than I had been able to in previous years when we had attended the conventions but my main focus was on Ray. It was great to be "Sue alone" for a change. But it was so good to get home to my own bed! The next week will be some outside activities and some clean-up work at home. If it is fine I will tackle the yard, if it isn't I will tackle the cupboards. There should still be some lovely mild sunny days before the autumn is over and winter begins but it is nice to get the winter clothes out and aired and to find replacements for those that look as if they have seen better days. We are inclined to cling on to our "old favourites" and go out looking less than our best so as soon as winter clothes are in the shops I am going to get Ray a couple of new outfits and sneak them into the back of his wardrobe so he can wear them to church etc this winter. He sees buying him new outfits as wasting money so better to do it before he comes home. It is this time of the year when I reflect on how I spend my time. I tell people I have a lot of choices, housework, yardwork, handicrafts, reading etc. Sure there is a lot of work that has to be done, some of which I hate - washing bathroom walls for instance. But along with what must be done there is pleasant tasks, like being out in the garden and sitting on the verandah with Ray in my breaks. I really don't mind shopping as long as we are not rushed and can take it leisurely as there is a social side to it too as we see some of our pleasant friends and acquaintances and stop and say "hello". With a bit of time management we get to have either coffee or lunch out at least once a week. And for me there is computer time and dropping by to visit with you all here. Last night I spoke to Mum's step-brother in Queensland for the first time in seven years. I rang his ex-wife and he is staying with her for a while as he had an accident on his boat, damaged some muscles and ligaments in his legs and now is staying with her at least while he is convalescing. At this stage although he has had surgery he is still wheel-chair bound. I am glad they are back together, at least for a while as I are quite fond of them both.They are both in their seventies and I know their kids think they are better together than living apart. Us aging parents can be quite a worry to our children - ask mine! Time to finish this time of reflection as I am invited over to our son and daughter-in-laws for dinner. I'll have my fix of playing with my three grandkids. Nice!

Hey Bonnie, now it is working you can catch us up with what is happening in your life. Sue. :cloud9:

Ray and I are just back from Camp Breakaway. The weather was glorious though it has just started raining here. The food, assistance and accommodation was the usual high standard. I realised how lucky we are to be able to go there. For me it is a place where I am encouraged to go for a walk, have a nap, sit in the sun and read without having to look after Ray. I am encouraged to leave Ray in the carers company, he is wheeled around, fed, showered, undresssed and put to bed. I slept in the same room and looked after him at night but through the day he was not my responsibility. For Ray it is like being among old friends. He has been going there at least twice a year for eight years. The staff are trained to look after people with disabilities and love their work, whatever happens they take it in their stride. There were four new couples at this camp. Some of the caregivers were so weary and worn down when they arrived and laughing and smiling by the second day as they had their burdens and responsibilities temporarily lifted from them. We had some imput from couple of local providers on additional services we might be entitled to and for one woman that reduced her to tears. We all know what it feels like to be carrying an unbearable load and then find there IS help out there. No-one wants to put their survivor/cared for person into permanent care until it is absolutely neessary and any help from outside gives us a chance to have a breather and maybe go on with the job a little longer and in a lighter mood. I know how much I appreciate the three hour respite on Fridays, my ME time. The entertainment was good as usual. The duo last night actually sang songs from the '80's not the '40's so I found myself singing along with Polly and her partner, they sang songs made popular by Elvis, Rod Stewart, Roger Whittaker, songs from my generation. The oldies didn't always know the words but enjoyed the freshness of their routine. Barry's mother confided to me that he had been in a wheelchair for 8 years after a vehicle accident so was happy to give his talents for free to bring happiness to others. What a fine attitude. Polly was pretty and sang well and looked glamourous and our menfolk enjoyed that as well. We have a busy weekend ahead starting at 3pm today when we go down to the resort down the road and help welcome people to our Apex40 convention. There will be 150 plus visitors from all states and a small contingent from New Zealand here for the weekend. Ray and I haven't done much during the planning process but will enjoy the company, the entertainment and I am especially looking forward to the cruise on Brisbane Waters on Sunday. It is ages since I have been out on the water, something that used to be a regular part of our lives, so fingers crossed that it is fine and sunny then. The members of the Apex40 club we belong to have worked hard to make this convention a sucess so I hope it is glitch free and a wonderful time is had by all. Our Tori is doing her first camp out with Cubs this weekend so that is another reason I am hoping it will be fine and sunny. She is looking forward to being away from her Mum and Dad overnight. She is growing again so is full of energy and a weekend of running around will do her good. The little boys will miss her though. One of the aides at Camp Breakaway has a little daughter the same age and she is also just becoming a Cub. What a wonderful experience it will be for both of them. Our kids were Cubs, Scouts and Venturers ( the boys) Guide and Venturer ( Shirley) and they learned a lot from their time in the Scouting movement. As parents we also got to camp out on the family camps and I think Ray's love of camping came from there. And so... a happy time, a busy social life, something to look forward to...sometimes life is good.

I got up early this morning and have been sitting here reading back over my diary entries from this time last year. I don't think anything major has changed but there have been a few subtle changes. Ray is more vague as time goes by, doesn't know what day it is , doesn't remember what he did yesterday or even sometimes this morning or even an hour ago. I guess our autumn ( fall) with the falling leaves, declining plant growth and slowly cooling days brings on all kinds of reflective thoughts. Here, facing a winter that from all reports may be a harsh one also means we are facing days of being shut in, unable to go out and about in our usual ways. I know this will bring more feelings of isolation with it. In real-life friends from our past hardly contact now, I can understand that as we have less and less in common . I know for some people the thought that dementia is somehow a "mental" illness does keep them away and it is out of sight, out of mind. I find my church friends and friends from the associations we have belonged to for many years still are okay with us. Ray does very little of his own initiative, he no longer clears his dishes off the table or remembers to bring in cutlery, he was still doing that this time last year. He does very little of his own volition beside eat and sleep. He does go out with me but it is a step-by-step process to get him ready and a lot of extra work for me to get him out of the house but it is worth it as it fights off depression for both of us. He still sits on the verandah for periods of time doing word puzzles or staring into space but he spends more time in front of the television than he used to and is less active. The shower nurse still guides him through some gentle exercise three times a week so that helps to keep him flexible. We went to the kidney specialist today and the report was mostly good but his iron is down significantly so we are doubling the iron tablets and adding vitamin C tablets. He is on so many medications and I am sure some of them conflict. But on the whole his health is good. He doesn't have much energy some days though and I find I am helping him up out of his chair now. Ray has had some more periods of incontinence but that has decreased in the last two weeks. Possibly the cooler weather is helping his kidneys to cope better. I love our autumn, cool days, cold nights. The days are so beautiful now. I have had computer troubles the last four weeks so have caught up on some odd jobs. Being without the internet has left me feeling cut off from all the wonderful friends I have made in my cyber world. The support I receive from this site makes a real difference to how I cope. Without the support of family and friends it would be a really lonely life. I realise a lot of our friends are more distant now, after all they have been "supporting" us for ten years almost. That is a real long time, and of course will not change radically ( I hope) in the foreseeable future. We as a couple will always need some level of support, emotional, spiritual, and sometimes physical. We are not needy, we just need a helping hand from time to time. Trev has been talking of applying for jobs away from here. There is a high level of unemployment now on the coast and as employers know their jobs are much in demand wages are lower too. I think he thought it would be simply a matter of applying for a few jobs and he would be back in work again. Not so it seems with so many others looking for work too. I am sure he will get something in the end and if he has to move away..so be it. But if he does move away that will be one of our supports gone. Am I being selfish in hoping he will find something local that satisfies him? I am preparing for a busy couple of weeks. Ray and I go to Camp Breakaway next week, Tuesday till Friday for the Carer's Camp, I sent the money away yesterday. I enjoyed it last year and have my fingers crossed that it will not rain. The weekend that follows is our Apex40 convention, it is local this year so Ray and I can join in some of the activities. It will be good to catch up with the Bendigo mob as we were at their convention almost ten years ago when Ray had the stroke that changed our lives on 19th April, 1999. The following week Ray is going into care for two weeks and I am going on a five day tour with some of the conventioneers. I know it has all come at once which is difficult but I will have a week when I come back when I will be able to set up the house and yard for winter. Of course there was the hard choice of going on the five day trip or going to our daughter in Cairns but I need to do other things that don't involve family for a change. And Ray and I are going to Cairns to spend ten days with them in July. The weather will be cold here by then but still lovely and warm in the tropical north. I am back on the computer but will not be back in chat for a couple of weeks due to these other activities. I hope to catch up with you all soon and be a "regular" again. God bless all of you in your struggles to make some sense of your life when you or someone you love is living with stroke, dementia or other life altering illness.

Happy birthday for today. And may you have many more happy years ahead. (((Hugs))) from Sue.

Ray has an AFO, without it he scrapes his toes as he walks. His present problem is steps and slopes, I have to be right next to him helping him when he is tackling those. Thanks for posting your family photo in the gallery. Now I can "see" you. Sue.

Sorry, sorry, sorry everyone for missing my caregiver chat again today. I "thought" my internet was fixed...but it only lasted about four hours! So I was off the air again. This morning ( your Tuesday night) the telco cut us off so they could re-attach the land line at the exchange, which they said was the last check they could make. So hopefully the line is as clear as a bell all the way through now! I certainly hope so as I have been four weeks without a reliable internet. I have used the computer internet cafe booth at our shopping centre ( 20 mins for $2), visited friends and used their computers etc. Now I hope mine is up and running and here to stay. On the homefront I have just been maintaining Ray as best I can. I know caregivers will understand that statement. It means I feed him healthy food, make sure he does his exercises, has his medication on time, has adequate rest etc. We did bloodworks last Tuesday but won't have the results till next Monday. He seems okay, his "accidents" have decreased somewhat, he has only had one fall in a fortnight and his arms are also free of bandages as all his previous bumps and grazes are now healed. He is perhaps increasingly vague about what he has done, where he has been etc as well as what day it is so I guess it is the dementia advancing again. I have been really missing the internet as it has become one of my chief sources of support. My cyberfriends here and on Messenger mean a lot to me. I can't phone a real-time friend at 6.30am or 11.30pm but with a little bit of luck I can find someone on line to talk to. Talking to someone suspends for a time the loneliness of being a caregiver with limited access to the outside world. The times Ray likes to sleep in other circumstances would have been my visiting time, my chatting time, my support-seeking time. So coming onto the internet fulfils some of the needs I have in that area. I am again considering what I do with my time. Like everyone else who is "retired" I have housework and yardwork to do, I have the extras to do that are involved in looking after Ray's needs, on some days that fills the days. But what do you do with weekends? On weekends there are no doctor's appointments, no regular committments apart from church on Sunday mornings. In the old pre-stroke days we were busy, that was the yardwork time and there were BBQs here and visits with family friends etc. Once upon a time we even had weekends away! Now on Saturday afternoon when Ray is napping I feel "hollow". Suddenly it seems as if I am in transition again, worried about the things we have lost or missed out on, feeling lost and lonely. I am trying to figure out how to banish such feelings. I want to be content in whatever situation I find myself in. Why is that so hard to do? My mum has been chatty on the last two visits. She speaks "babble", although she probaby thinks she is speaking words there are just sounds, nothing I can actually understand. I wish I could understand what she is saying. I look at her face and try to read her body language so I know if I should say "there, there" or "wow, isn't that wonderful?". Mostly her face is unreadable but sometimes she seems to nod or look as if what I have said is the right answer. I guess a few people who have a survivor with aphasia have the same puzzle to solve. How I hate what Alzheimers has taken from Mum, and by extension from those of us who love her. More research money will be needed if we of the next generation are not to go the same way. Our fall is lovely now the humidity has disappeared at last. The days start off cloudy but when the cloud burns off the days are sunny and warm with a gentle breeze. We have daylight saving only for another two weeks so I will miss it when it goes. I get up to a cool house after the night has cooled it down, gradually through the day it warms up again. Last night we came out from our Lions dinner meeting which is held in a Surf Lifesaving Clubhouse, so right on the beachfront, to find a cold easterly wind blowing. Before we walked the few yards to the car Ray was complaining of the cold. So from now on I will tak a jacket for him so I can go to the car and get it if the temperature drops suddenly. Of course in winter he is icy cold down his left, stroke-affected side. I am just finalising a two week break from the end of March. I am sending Ray to a different "residential care centre" which is an 80 bed centre with high and low level beds in the same area. I am not sure how it is going to work out as he has become used to Nareen Gardens but it is increasingly hard to find a respite bed for him there. I need to have a break, I think more so lately as I seem to tire much more easily than I used to do. The fact that he gets out of bed at least once, sometimes twice during the night and wants help to get to the toilet and back probably doesn't help. I am not getting enough continuous sleep. I guess eventually I will simply get used to the change of routine. That is what generally happens when there are changes. After I take the break I am hoping to feel more relaxed and to rebalance my life again. I have a few little problems to be looked at here. I did ring around to see if I could find a tradesman interested in doing some little jobs but so far no luck. You would think with all this talk of recession etc people would welcome small fill-in jobs but that doesn't seem to be the case. Ah well, time will go by anyway. I MUST learn to go with the flow.

Thanks for posting Gary. We are lucky in the area I live in that we have had a special rehabilitation unit for stroke survivors. Alas that has just closed and the beds "moved" to another hospital. Unfortunately that has scattered the wonderful team that served survivors there. Government economies seem to result in such closures. I have heart-felt sympathy for Darlene Jay balancing the needs of Kyle and his 14 year old brother. We don't realise the strain on the siblings of those young people who are now disabled and need a lot of care, do we? Do you have foundations who do gifts or grant wishes for those in such a family situation? We do but the beneficiaries are a select few, rather than all those who need it. Tell Darlene that we are praying for her family, we may be a whole world away but prayer stretches that far. Sue.

PS I may be offline to the internet but prayer is still flying heavenward for all that need it here. Catch up soon. Sue.

I wrote this entry on the 6th and nothing has changed. The computer still doesn't go onto the internet, the phone line still sounds hollow but according to our telco it is okay. I just wish I knew when it will be okay my end! I miss you all. I miss your news, your woes, your worries. But most of all I miss that feeling of support. Please pray that this will be over soon and I will be back online at home again. Sue.

I had another call from my telco's complaint's department to say my problem has been fixed...but every ten minutes or so the lines drop out and the computer freezes and an error message comes up...so how "fixed" is my problem? I will just keep logging the drop-outs and hope that on Monday I can get onto another operator in the complaints department and...complain! Today has been a day of frustration, maybe some Fridays are like that in whatever situation you find yourself in. There always seems to be a list of leftover jobs from previous days and no more time to do them in than usual. So today I wanted to spend my three hours off in about eight different ways. That is a silly thng to do I know, so no wonder I just did three of them - three hours doesn't take long to go. Ray had his regular carer Jeff and I know he is fine with him. Tuesday's shower nurse never turned up, so I rang and complained about that. It has been a week of complaining. I had to leave the dementia support group just as the mentor was getting into an interesting subject. Most dementia patients eventually get a curved neck, guess there is a technical term for that, and spend most of the time looking at the ground. This in part leads to not being able to concentrate, recognize visitors etc. So he was telling us to arrange pillows so that the head is back and the eyes can then focus forward. This does not apply to Ray but it does to my mum who I visit twice a week. Not that she is bed-bound as yet. Today Mum was a pitiful sight as she had had another fall and really banged her head, so she had a big bruise on her forehead and two black eyes. She mostly slept while I was there. I was so sad to see her like that. Every time it happens I think I should never have put her in there, I should take her home etc. But I know that with Ray as well I am never going to be able to do that. It is no-one's fault that she has the falls. She still walks round and round the corridors of the dementia lodge where she lives, that is her whole life now. She eats a little, sleeps a little and walks and walks and walks. I am trying to get a fix on some of the problems I have to see if some of them are solvable. Like most people I have a lot of outstanding maintenance jobs so I need to find a handyman to do some of them. This is no easy task, to find someone who is reliable and will know what they are doing. I need a few odd plumbing jobs done, a person to give a quote for a pergola where my flower house is currently falling down and someone to fix my front screened windows. The front part of the house was last renovated 25 years ago so is due for some repairs. This is when I miss the carpenter/handyman who used to be my husband Ray prior to the strokes. He was so good with tools, I wouldn't have needed to look elsewhere for a "Mr Fixit" I had one on the premises. I still find it hard even after nearly ten years to do the jobs that Ray once did. He used to do all our repairs, mowed the lawn, did the heavy gardening, did all the odd jobs. This slowed down a bit after the 1990 stroke as he was left with fatigue, more so some times than others. He did go back to work for 8 1/2 years but he slept as soon as he got home and some weekends he'd do a couple of jobs and sleep both Saturday and Sunday afternoons. But he was still our maintenance man, our lawn mower etc, it just got done a lot less frequently. I took over a lot of the chores even when I was working full-time. One of the reasons I dropped back to working only three days a week was so I had more time at home, more energy to bear the extra load. I simply don't know how anyone can look after someone who needs full-time care and work as well. It must be an astronomical job. Now of course with vascular dementia added to the mix of Ray's disabilities he needs 24 hour care. One of the reasons I now suffer from tiredness a lot of the time. I know it is just the way it is, I am explaining not complaining. There is till a tiny part of me that misses the old life and wonders what life would have been like if Ray had not had the strokes. Would we have been half-way around Australia, walking on a deserted beach in Western Australia, sitting in a pale blue ocean pool, going fishing, picking up shells? I would say so as that was one of the dreams we shared. It is the dream that half of the population of Australia subscribes to, the dream of looking around our own beautiful land. And then maybe heading off shore, looking at the rest of the world, seeing all the other fascinating places featured in any travel program, the Pyramids by moonlight, the Taj Mahal etc etc. In every country there is beauty in the wonders of reef and beach and mountains and so many places exotic and faraway and we will never see them together as we'd planned. But most of all some days I just want a fairy godmother - can anyone put me in touch with one? I want to go out, dressed in my best, and have a wonderful, memorable night out, one I will remember always... I am too old to bother with a Prince Charming though...much too old, much too tired. And Ray was a divine dancer in his youth so I have been there and done that. Before I get too old I would just like one more go at the bright lights, the music, the entertainment...the sights and sounds of people having a wonderful time. But right now I would settle for my internet working.

Ray and I both had the ever-ending cold last winter, it was 'orrible 'enry. I found I forgot a lot of stuff, foggy brain etc. and of course Ray finished up in hospital. Now with summer almost over I am no looking forward to the winter ills and chills creeping up on us again. So sorry to hear your blood pressure has you grounded again, just think of it as extra time at home to do what you want for a change. And I am sure Sam is not complaining about the extra sweet lovin'...lol. If you get any messages from "upstairs" to start building an Ark and collecting animals let us know. Sue.

Here I am, sitting at a friend's computer ( even older than mine!) writing this blog to let you know my computer is fine, Ray and I are fine but my phone line needs digging up and starting all over again. I managed to do 20 mins on a friends computer last week so was able to let Donna know I am out of action. I may be at chat this week, but it seems unlikely at this time. I'm so unhappy about all of this especially living without being able to contact all my dear friends and companions here. Whenever I ring up to ask when it will all be fixed the answer is: " we are working our way down the list". It seems during one of the storms a fortnight ago part of the network blew up and now they are re routing calls but the ADSL is a different matter. Always an excuse eh? The past week or so has been busy as usual. There is always plenty to do at our house. I can de-cobweb, de-clutter, de - whatever until the cows come home and there would still be a lot to do. The dust bunnies are forming warrens under all the furniture and I think starting their own sports channel soon! Unfortunately they won't form work gangs and share the load! The Autumn Fair at church is a fortnight away so I am increasing my output and there are piles of ribbon, lace and beads, beads, beads everywhere. And still I find time to be lonely. Ray had his three days at Camp Breakaway this past week. I spent a day catching up on little tasks, a day with my sister and a day doing some gardening. We had a lot of rain a fortnight ago and I have weeds taller than hollyhocks! So I've started doing a little at a time to get it back under control again. As the temps start to drop I should be able to spend more time in the garden. I will shift Ray's comfy chair out the back and he can do his puzzles as I work. The day with my sister was good, her husband was out at a meeting so she took me out to dinner and we had some lovely seafood. It is a real treat for me to eat out without Ray I can just sit and relax and enjoy what is happening around me for a change. It was strange sleeping in a tiny sinlge bed she uses for her grandchildren when they sleep over but I managed a night's sleep and that is what counts. Mind you I was glad to get back to my own bed again. Trev said he wasn't going to do much this week. He is looking for work and did some of that but with more places closing or downsizing as the economic climate cools I don't know how long it will take him to find a job. With his usual confidence he was sure it wouldn't take long but we all know how difficult it is once the word "recession" is spoken out loud. Our businesses have been overstretched for a while and now confidence just seems to be sliding. I guess it is a world wide problem and there will be a lot of rethinking before a solution is found. In the meantime he can always do some of the jobs that need doing at home ( how's that for wishful thinking?). I have some plans in place for a break in April when Ray will have two weeks of respite. I've also booked our Queensland flights for July, spending is supposed to be good for the economy so give me a medal eh? Ray can travel better in the cooler weather. Of course I am not really sure he wants to, he is getting to the stage where just staying home and going through his usual routine is challenging enough for him. The Camp Breakaway breaks are good and he seems to be okay with going into respite when I need a break but when I suggest holiday destinations and outings he doesn't seem keen now. So think of me with the cobweb broom in one hand and the birch broom in the other gaining on the dust bunnies and making the spider population homeless. Imagine me in the jungle up the back listening to the rustle in the grass and wondering how you tell a snake from all the harmless sun lizards that frolic in the sun up there. Seems as if there is always something to do, even if coming onto Strokenet is not an option.

Sorry I wasn't here on Tuesday night. I have been having telco problems again, I am at my sisters today using her computer so at least I can catch up on blogs etc. You are so right about learning to cope with how life is TODAY Kathy, but it one of the hardest things to do. Be with you agin soon I hope. Sue.

I've been on this site going on for four years now. In those years I have of course grown four years older, I'm now past sixty, Ray and I had our fortieth wedding anniversary, he is now sixty six. We are not the young folk we used to be, nothing like we were in 1990 when he had his first stroke at aged forty eight. And yet, in a way, a huge part of our lives got left back there. We are part of the lost generation, those who for one reason or another were unable to fulfill their dreams, who had their hopes dashed, who never did all the things on the wish list. It was not our fault, not something we deliberately did, it was a cardio vascular accident, we call it "stroke". I hope now at sixty one I am older and wiser but I very much doubt it. Today I read a few posts with that plaintive echo: "why me? it isn't fair, I want my old life back." and so do I, so indeed do I. But what would that life be like now? Better than this one or just different from it? It is too far back to know. Of course I can go back to the major strokes in 1999, that is less than ten years ago. But to the 1990 stroke, the beginning of all that trouble? No I don't think so. So how do we deal with all that wishful thinking, all that wondering about what might have been if the stroke didn't happen? How do we cope with the disappointments, the lost dreams...maybe even that sense of failure? Because I know that is one of my feelings some days, a sense of failure. Like the failure to thrive in babies it somehow stunts my growth. I need to get rid of that feeling. I really do. And become the kind of person who lives in the present, deals with life as it comes and enjoys her life. What is the use of moping around, it doesn't achieve anything. There are people here who do make the most of every day, I am thinking here of Asha (achandra) and hostallan. They personify for me the power of going with the flow, of getting on with life just the way it is. I admire their fortitude and their attitude. I try to be more like that day by day. Not just stoic but cheerfully doing the best I can with each day, and doing a good deed if I can. It is not always easy to find a good deed to do but it might be as simple as calling out a cheery greeting to my neighbour, telling a shop assistant "thank you, and you have a nice day yourself too" or just giving way to someone else, on a street corner, in a shopping centre car park, wherever I can. To try to be a blessing to someone rather than just another person who obstructs them in some way. We all know what we like in others so that is the way we need to be ourselves. I am feeding my neighbour's cat again. My neighbour is away on another trip, partly business, partly pleasure he says. He often goes away for a few days, a couple of weeks, sometimes more. His daughter has gone back to her mother, she is a teen and there was some problems so that was decided on as the best solution. He had always been the one who stayed at home and now he doesn't have to so he is enjoying his freedom. The cat and I don't get on but he needs his food so he has to tolerate me. And I've notched up another good deed. The sun is back so my "rain depression" has lifted again and I feel like doing some things around the place. Today Trev and I pulled out some ivy that was choking some shrubs and gave them a cut back. It was quite warm as there is now a lot of moisture in the air and the humidity is back. The floods are now in northern New South Wales as well as Queensland but nowhere near here thank goodness. The Victorian bushfires are now mostly under control. Life is coming back to near normal again. But our lives will never be normal will they? There will always be the extra work caused by the strokes Ray had and all the restrictions that go with poor mobility and poor swallowing and all the other deficits he has. It makes a lot of work for me and because of that I feel it so much harder to achieve anything. But maybe the actual achievements are not that important you know. We really do need to set our own goals and make them realistic ones. There is no use us thinking that if we worked, if we earned more, had more, achieved more, we would be happy. I guess we could simply decide to be happy with what we have, doing what we can, achieving what? a life well lived perhaps? So tomorrow is another day to practice loving my neighbour as myself. It is another day of going through life as cheerfully as I can. If it has some surprises I will work on dealing with them without building up a head of steam and getting flustered if I can. Flow, here I come.

Hi there Kristen...what about me? I mean we met because Ray had a stroke and Patrick had a stroke and we met here. But apart from that we live a world away and would have never met. All of the friends you have made on this site came about because of Patrick being a stroke survivor and you being a caregiver. What about the wisdom you have learned, the patience you have gained and the journey you have been on...there is a lot of value in what you have been through and what you have learned because of that. And also look at the independent person you are now, that might not have happened except for your need to overcome the circumstances. You are a strong woman now, life tried to put you down but like the cream, you rose to the top! So celebrate, on whatever day you choose, not only the stroke anniversary and how Patrick has recovered (driving even!) and who Patrick has become, that dear, living-and-breathing, husband of yours. But also who you have become, oh dear friend of mine. I have so many dates for Ray's five strokes but always think of two important ones, 19th April 1999 when he had the first of two major strokes and September 3rd 1999 the day I officially became his caregiver. We have had our ups and downs in the going on for ten years we have been on this journey but I am always thankful he is still here and we are together...well almost always....lol. (((Hugs))) from Sue.