swilkinson

I agree with Donna. Live life to your full potential, then have a down day if you need one. I take Ray out a lot, only locally due to petrol (gas) prices, but then give him a day at home to snooze, sit and do his puzzles etc on the verandah in the sun. It is only eveining events that seem to make him real tired. If we go out at night he needs a bit of a sleep in the next day, if that is possible. Good on you for going out and giving your wife her shopping tonic. It is a great thing to do. Enjoy your summer. Sue.

Yes, Ray does have a shower chair and a hose with a rose on it. BUT his main problem now is just movement, side to side, leaning back, stretching are things he can no longer do since the broken pelvic last year. I think he has less range of movement. He can sit down while I soap him ,stand up while I shower him off but for some reason he doesn't see to be able to shower himself. Louise, we do have a son who lives at home but his commutting to Sydney to work means that he is 12 hours each day away from home. That is a long time, so when he is home he does do some small jobs for me but not enough to relieve me of the "over-loaded" feeling. Our northern family are in the service of all and sundry as Captains in the Salvation Army and I don't begrudge the people they help a claim on their time. Our other son has a responsible job ( he is a funeral director) and three children so I don't expect help from him at this stage. Asking our kids for help will be one of our choices down the road a ways. I am hoping to look after Ray for as long as I can. I do have an identity - Sue the caregiver for Ray. Sue.

Wow, fresh bread...droool...yummy. I can imagine the wonderful aroma, wish I could be there to beg for a free sample. Looking forward to details of Lesley's trip details and anecdotes being posted in her blog. I agree with the problems with ageing, I can't carry what I used to either, bags of compost etc , any distance, uphill etc once hardly raised my breathing rate, sadly the years have altered that and I have to stage it more. Boo hiss. Have fun with fishing the lake, I envy you that one. Sue.

Janine, read my blog (hostsue), Ann's blog (arogers) Ruth's blog (RLT), Sarah's blog (spacie1) and you will find out that the "Angel Florence Nightingale" image does not apply to any living woman I know. We are all struggling, with our emotions, our survivor, our lack of support, our finances, our environment. We are like mad women, dragging our survivor towards wholeness and healing through some crazy government-designed maze of red tape and dead ended unhelpfulness. We have pulled ourselves up to our full height as a bluff against all that life throws at us and now we are stretched to the limit. And in the caregiver's world there is no place to hide. Right now, although you don't think so, you are in a fairly easy stage of caregiving with a lot of the hard and dirty work of looking after Larry done by the paid staff. One day Larry will be all your responsibilitiy. For now you need to be learning how to look after him, because at home you will be doing everything else as well. All responsibility, all care will be in your hands. The good news is that by the time he gets home some of the old Larry may be back. He may be a cheerful and endearing companion, he may be someone who will make you very proud with his hard won progress. It is an even harder road for him to travel. But for the two of you, if your love is there, it will still be a life worth living. (((Hugs))) from Sue.

Ruth, I am so sorry you are not close to me as I would rush right over and give you a big hug! We wouldn't have to worry about Dick and Ray as they would be talking and not listening and fill an hour or so with that before they both got bored! Yes to most of what you said: losing yourself, putting your survivor first, last and in between, being a "widow with a living husband", missing the man he used to be etc. Yes to the agony of making the decisions about the mower, the fence, the roof, all those decisions that were formerly made by your husband. Yes to asking them NOT to expose themselves in front of the family and yes we do still count. BUT we do still have rights as well as responsibilities and one is to have time off and time out. Time off is when someone else is looking after our loved one, paid help, a family member, whoever offers. Time out is the next half an hour, playing computer games, chatting on Messenger or chat here, talking on the phone. I say to Ray: "I will be busy for the next half an hour and will get you something after that." If he asks for something I say: "Soon, I am busy right now." At first this was not a success but practice makes perfect. I know Sarah (spacie1) puts a comedy DVD on for Gary so she can chat for a while in Caregiver Chat. So whatever you can use to distract Dick for a while use that to take some time for yourself, it will help to give you a break and lower your stress levels. The obsessive behaviour is another problem.Some caregivers find that a schedule helps as it stops the survivor/dementia sufferer from keeping on asking what is happening next. So plan your week, allocate time for the things you MUST do, and some time for the things you'd like to do and go from there. If it get worse your husband needs referring to a gerontologist who specialises in dementia as there may be medication for it. Try and find ways to distract Dick and distance yourself from the problem. Try not to take things personally as much as you can. It surely will build up your stress otherwise. (((Hugs))) from Sue.

Bonnie, you sound very strong. I'm glad you are in a place you feel comfortable with. You are right, little ones just accept you the way you are, they do not remember the "old you" or fail to cope with the changes like some "former friends" have done. I am glad to be here right now. I struggle with all of Ray's issues. I struggle from day to day with what life hands out but there are mor things than the stroke to contend with. We just need to get on with it and make the most of life! As far as I know this is the only life we are going to get. I'm glad you left your mother-in-law in a spirit of fighting for her future, we women are often at our best when we are determined to overcome the difficulties. ((Hugs))) from Sue.

Ann, I don't pray for patience either. I pray for the strength to get through each day, without losing my temper, without making a fool of myself etc. I want to be remebered as loving and kind not as constantly losing my cool and as you say it is better "to go through the experience lovingly." With Ray's dementia as with Bill's there can be good days and not-so-good days. No-one seems to know why dementia is like that, in theory it should be the same every day. If Bill doesn't want to get up, no breakfast in bed, breakfast only when up and dressed and sitting at the table. Tough love. Ray does the funny moves with his quad stick too. I can walk with his arm across my shoulder and mine around his waist so we can get into a pool or across difficult terrain but he is too shaky to just hold hands. He really LEANS heavily on the stick now. But he still manages steps occassionally and walks into Lions with his head up and a smile on his face. There is still that public macho personae. (((Hugs))) from Sue.

Hey Gary. Nice to hear your voice! The interviews were good, very informative and I think would have helped people to identify that they were having a stroke. If we can shorten times to hospital, diagnosis to treatment etc we can save brain cells and lessen the effects of stroke. Keep up the good work with the Kyle Diaries. We are praying for him too. Sue.

A recent survey in Australia has put caregivers as a class, both professional paid workers and unpaid family members as the group with the highest stress of any job, paid or unpaid. I guess I am not surprised. For me it is the constant nature of the job. There is no end to the chores, no point at which I can say: "there, I have done it, that is that finished for now." and walk away, like you do in any other job. Because I am only one person looking after a person who probably needs three or four people to completely look after all his needs. I am always aware that I could do better, do things faster, put more effort into the job etc. Because I look after Ray and mix mainly with people who are 10-20 years older than me I am the recipient of all kinds of advice. Most advice is well-meant and starts off with something like: "When I was caring for my mother/sister/husband" etc. Everyone has a story to tell me and a lot of the advice is of the "take care of yourself" variety. Of course no-one manages to explain how you look after yourself and look after someone else full-time. I know they are all well-intentioned but I wish people would stop telling me to look after myself and offer to look after Ray for me instead. I know it is never going to happen, but it is a particularly favourite fantasy of mine right now. I think I am finding it harder now I have to shower Ray. Before his fall in January last year he was able to shower himself. He would pack up what he was doing and just go off and have a shower. But after the fall and the recovery, rehab etc that came after it it was necessary for him to have someone else shower him. He doesn't have the concentration to stand, turn, use the hose etc. It is partly a balance issue, partly a process issue. That is the dementia at work too. It was another piece of independence that he lost. With the dementia gradually increasing other things will slowly follow. It is sad but there it is. When I read all the newbie caregivers' stories I remember the pain I felt back then, in 1999, when Ray had the major strokes. I remember my anxiety, my eagerness for Ray to get better, to come home, for us to go on with our lives. I didn't realise what a changed life we would lead, how much work there would be for me, and how I would struggle with it. What we go through, emotionally, physically and socially is not in anyone's book on caregiving, there is so little advice for carers that is of a practical nature. I cared for Ray for the first seven years with no outside help at all, apart from the three day breaks at Camp Breakaway twice a year and a friend coming in for a couple of hours every now and again. Then I started to put him into respite to give myself a break, a time to wind down, relax, feel myself again. When I am busy being "Nurse Susie" there is no time to feel like the person I once used to be. I wonder what happened to her? She was nice, funny, a good listener. She liked a joke, laughed till she cried, seemed to have friends galore. She cooked a wonderful roast with all the trimmings and could throw a dinner party for eight or ten together with a day's notice. She was so good at keeping up a correspondence,answering messages, being a helper in all sorts of situations. She held down two jobs, one paid, one unpaid and people spoke highly of her. I wish I had a friend like her to help me out now. And to tell you the truth I liked myself as that person much more than the unpaid caregiver I am now. Then as of a year ago I finally accepted that I needed some inhouse help as well. I hated it when Ray looked dirty, unshaven, slovenly in appearance etc. I don't want our standards to drop or for others to see those changes in him and infer that I am not looking after him properly. And yes, I still do worry about what people think of us. So at least the shower nurse coming means it is not always my voice heard making remarks about showers, clean clothes, having a shave etc. And Ray is remarkably more co-operative for the shower nurses than he is for me. Though I think showering him in winter is going to be a bit of a challenge as he feels the cold and our house, being open plan, is only warmed in patches. Which is one reason I think we need to live in a smaller house sooner rather than later. The changing seasons always seem to bring in new problems. Like your northern winter ours has come in earlier than usual and colder. The temperature is falling earlier than usual and so we are feeling colder. Ray is harder to keep warm since the strokes as like many others he becomes icy cold down his affected side in winter. And he always wants to have light clothing on when something heavier would be more appropriate. He moves so slowly that the exercise and walking he does is not enough to warm his body up. It was not as warm today as earlier in the week when we enjoyed the warm afternoons out on the verandah. I guess that contributes to me feeling out of sort too. Today the sun was out, the sky was blue but it was colder than it looked. Ray spent some time on the verandah just the same. I went out for a short while, I find just looking at the view and watching the birds come to the feeder next door makes me feel better. I hate feeling cranky and out-of-sorts. I don't think it is sitting on the pity pot. More a build up of frustration over a lot of small things that I feel I have no control over at present. For the caregiver who stays and works on making the life of the survivor better there is a cost to that staying. It is hard to explain in a way as it is beyond the sum of all he/she does. It is partly the burden of dealing with the frustration of all the life changes and challenges that include physical, financial, emotional and societal limitations. There is a sense in which life slips away with every passing day...sometimes it seems like I live with the death of hope and the absence of joy. Someone once said that joy is an attitude. I look back at the "old me" and wonder how I could have been so care free. But that was both an attitude and a happy accident of life I guess, not an attitude I had cultivated, just a happy circumstance of a somewhat protected life. I wish I could go back there and re-capture that light hearted feeling, just for a while.

Janine, I hope this doesn't sound stupid but I believe the life after a severe stroke or other major trauma shows the metal of the person and also their caregiver. I know from personal experience that although people don't always say so we have a lot of peope watching what we do, how we manage, how we react to situations and sometimes our actions when we are under stress scream louder than our words ever do. It is a mark of character how we react when the going gets tough. Larry needs you and you still need him so you hang in there. You will find as his stroke deficits slowly diminish that this life has a lot of compensations. It is an opportunity to become gentle, to acquire that "wisdon born of pain". And there is a closeness that is only there between two people who are struggling to survive together. I can't explain it, you have to expereince it, which you will when Larry comes home and you strive to make a new life together. Whatever we think of as the "hereafter" it is the life we've lived that will be remembered. All the wealth and recognition is as dust if the person cannot be remebered as one who endevoured to do their best. And believe me, stroke survivors who struggle with their deficits and triumph are bigger heros to me than any mere sportsman or movie star. And their caregivers should be right beside them in some Battler's Hall of Fame. (((Hugs))) from Sue.

Kimmie (((HUGS))) from me as you face this upheaval in your family. Break-ups affect so many people, not just the couple involved. My sympathies to you and to your son too. Because of Ray's strokes we, like you, often feel helpless, knowing the difference between what we could have once done and what we can do now. But our children who are are younger and stronger should be able to sort out their own lives. All you can do is to be there for them when they ASK FOR advice etc. And love them whatever they do, as I know you wil. I hope the couple who are expecting a baby can sort out their differences and prepare a happy home to welcome the little one into the world. Sue.

Hi George, tell Lesley "Hi" from me and tell her to write a blog about her holiday in New Zealand. Even being so close I have never got there but believe it is a beautiful country with friendly people and an amazing amount to see as a tourist. Late autumn here, a cold snap overnight and I have to go through our stored clothes and get out winter weights for us all. We don't freeze over but it often hovers just above frost point for days at a time so we do need our "winter woolies". Glad to hear the exercise have paid off and carrying your canoe is easier. Goiod fishing mate. Sue.

Get as much exercise as you can as you will need all your strength to look after Larry when you bring him home. If he loses some of his excess weight that will be a good thing too as from time to time you will have to lift him and the lighter he is the better. Ray is quite slim now, has lost about 20lbs since the last stroke in 2005. I'm not in the best shape and I haven't much time for exercise. Don't get me wrong, I do a lot of work but it is not the benefit that aerobic exercise is. I would suggest you get some exercise programs on video or DVD so you can exercise inside your home in your spare time. Walking out in the fresh air is not always an option if you are a full-time caregiver and can't leave your survivor to go out alone and pushing a wheelchair requires a lot of upper body strength so ask your step-son to set up some equiment for you to work on that if he can. He may even be willing to act as your personal trainer! I say when I go out alone I am "space walking" as I walk along the lakeshore, in the shopping centre or round and round Mum's dementia lodge walking track, with my mind a blank and my feet just taking me wherever they want. I need to rest my mind and exercise my body at the same time to keep my sanity. (((Hugs))) from Sue.

Butch, I don't usually reply twice but had to respond to what you said: "angry-man syndrome-example: the house is on fire, I can handle it...someone spills the milk, I'm going to kill somebody." I don't think this is much more than the building up of frustration that happens to the long-term caregiver. BUT I think you did right to go on anti-depressants at least for a while if that helps you manage it. I think I am suffering from something similar as I have flown into a rage several times in the last couple of weeks over a very small event. I also think I need time off as most of my time off goes to shopping etc, things I should be able to do other times so I actualy have time to myself. It seems as if life extends ahead with not much prospect of it improving here. Glad you are still able to put plans into place, like moving if you need to. I need to down-size soon as this house is too much upkeep for low income earners. I can only do so much myself to improve it and I don't want to just let it fall down around me. So moving is starting to look like part of our future too. Sue.

Ruth, you only live once (thank goodness) so have to treat every day, week, year as close to how you would have done pre-stroke(s) and fit in as much as you can. People say to me "I don't know how you do as much as you do with Ray." Honestly sometimes I don't know either. But I have just the one life and use it as best I can. I am partly driven by the statistic that says some caregivers pre-decease the person they care for. So there may never be "me time" and I have to use my time well. I am not usually an angry person but the last few days have really been so full of things that have pushed my buttons. Today a new worker who had never been here before came to look after Ray, so the first twenty minutes of my "time off" was spent running her through the routine. She didn't clean the bathroom, didn't put out the washing, even left all the lights on in the house. I wonder what kind of training the company puts them through. I live in a world that I can't control and sometimes don't seem to be coping very well with. But it is the hand I have been dealt for some reason and I have to do what there is to do to the best of my ability. ARRRGGGHHH!! Sue.

Butch, thanks for filling us in on what is happening for you and Lisa. I like the way you handle life and if anti-depressants make that easier, good for you. Spring is a great time whichever part of the planet you live on. Our autumn(fall) is extending with a few dry sunny warmish days and Ray and I are making the most of them knowing gloomy gray winter days will be here soon enough. The kittens sound great entertainment value. Glad your PCA is working out well for both of you. Good help is hard to find but worth it's weight in gold when you do. (((hugs))) from Sue.

Yep...I am back. Due to a lot of unforseen circumstances both mechanical failure and ISP orneriness caused me to be blacked out so Trev set up a new ISP and late this afternoon I finally got access to the internet again. Like a boomerang you can throw me away but I'll finish up at your feet or hitting you on the back of the head! So watch out! What has occupied the past week or so? All sorts of things - doctor's appointments, hair cuts, the usual round of engagements that forms the framework of our lives. The glorious late autumn sunshine has made sitting out on the verandah with Ray such a pleasure. We have a "Biggest Morning Tea" campaign in May with people encouraged to meet together for a "cuppa" and donate money to the Cancer Council for research and so far Ray and I have attended two with two more to go, so our social life has suddenly improved! Then there was Mother's Day last Sunday and after we went to church we went over for a BBQ over with our married son's family. A bit of a mixed blessing for him though as he was "on call" for the funeral company he works for. Someone had to do it and he got the short straw. So he did three "pick ups", one at a nursing home, two from private homes. He said the third one was the worst as there was a large family in the house and much grief. It is a hard job when it is like that for the "removalists". Trev did the BBQ at his house in his place so we did not starve and enjoyed a family time with our daughter-in-law and three grandchildren. I did get some separation anxiety from being without access to my internet friends and did have a full day on the pity pot when the "blues" hit me so hard I thought I would just go away and not come back. That was partly from the feeling that I have been "too long" at this caring business and it was all too hard. Nine years and counting does not make that feeling go away. The years of experience just help me keep it at bay. And I get by with a LOT of help from family and friends. It never seems to get easier, just harder as you age. But that's love at work. And life does go on. Some happy days, some not so good. With the dementia Ray has good and bad days and it is hard to say why. Some things he does makes me want to scream, others seem to reduce me to tears. I had that one early morning when he decided to "look for something" in the refrigerator and picked up a large container of pumpkin soup and dropped it all over the kitchen floor. What a clean-up! But even as I scolded I could see his sad expression and knew that in some way he was just trying to help, to lighten my load. How very unfair life seems sometimes...to both of us. I booked our flights to Cairns for two weeks in June today. As I was booking them I was looking ahead to the trip, an hour and a half by car to Sydney, one hour (at least) to wait at the airport, three hours on the plane. It is hard on Ray, sitting for so long but if I take his puzzle book in my carry on luggage and keep him busy it will all go by in a flash. I try to cushion life for him as much as I can. With physical and now mental problems life is no picnic for him either. I have to remember that...if it is why me? it must also be...why him? too. I'll spend some time now reading your blogs and then read all the posts I have missed. It will take a while to catch up. But that is okay...life will go by anyway.

Hi Janine It is a bit late for me to say "welcome to blogging" but as I have been lost in cyberspace for the last ten days this is my first opportunity. I can hear an echo in so much of what you have said in what I said after each of Ray's strokes. Each stroke is SO devastating for the surviuvor, the family and even to friends and colleagues that it is hard to believe that life even goes on..but it does. I laughed at your "Red Queen" blog as I so agree. I run as fast as I can and still finish up the day with more to do than I started out with! When will it ever end? I've been nine years in the caregiver role now and there have been good times, bad times and what the h*** times but I am still here and so is Ray. I just encourage you to take one day at a time, do your best with the knowledge you have and add to it as you go. Don't blame yourself for mistakes others see in you, that is just their prejudices filtering the view. I wish I could give you advice from all my experience but each persoon has to find his or her own way through the maze. No-one can syphon into you all the knowledge you'll need for the journey, but we can all stand by and cheer you on. (((Hugs))) from Sue.

George, great to hear that you are coping on your own and that Lesley is having fun visiting with her folks in New Zealand. I guess the temperature is dropping there llike it is here in Australia and she will be glad to get home to you. I admire you for the progress you have made. I guess you do not think of being a stroke survivor as much as those whose lives have been changed more radically. Ray and I live with his deficits from his many strokes still. Bleeding is a problem to most people who are on blood thinners and as you have found out you do have to be wary of infection. Fevers from infection can cause confusion to so no rambling in the woods in a confused state please...lol. I guess you are looking forward to May 13th as the dogs are, when that dearly loved face will appear at the door. Cheers, mate, from Sue.

My theory on life is that chaos is the beginning of new life. You throw all the pieces of your life into a whirlwind and what comes out is going to look much different to what went in. It may not be what you want but it will be a formula that fits your present situation. If you sat down and daydreamed of how to live this part of your life for the best results for Dick and for you how would that look? Would it look like an almost empty house with comfy chairs, some coffee brewing and friends dropping by? Because I think that is my ideal. I have always loved people and to be put somewhere where they didn't come any more would be prison for me. But for Ray it is a sunny verandah, a find-a-word book and the wife bringing food when he feels hungry. He is not such a people person and prefers a quiet and orderly life. Discuss hospice and find out what it would be like and if you can live with that. Here we have Palliative Care which is home based for terminal cancer patients. The nurses tend to run a program of care for the recipient and the spouse provides the back-up. Hospitalization is the end of the process, but not always as some people still stay home right to the end. If this turns out to be your choice then let friends in on the decision and do allow them to come and go as you deem appropriate, and let them HELP you. (((Hugs))) from Sue.

Fred, you and I both come from the generation where we do the best we can for those we love. I do what I do for Ray out of the love and respect I have for him. I am no saint and sometimes grumble under my breath as I do the "cleaning up" etc. But we do what we have to do to keep life as normal as possible here. I looked after my Mum and Dad for the same reason. It just happened that I was the person it was left to, my sister at that time was alienated from them and we do not have other family here in Australia. I am sure you know a lot of people who looked after older parents and then a spouse if you think about it. It is not such an unusual thing to do. A lot of the elderly widows in my church did the same so I am just following in their heroic footsteps. It is not all gloom either, I have a few laughs every day. I have people who support me and love me, not always the same people mind you! But I know that when the minister said: "till death do you part" God had this in mind. So I do it with His help and support too. Sue.

I don't know how many of you have dealt with having carers come into your home. This is my second time with that as I had carers for Mum and Dad when they came to stay a week and stayed 4 months for both of them and 2 1/2 years after that for Mum. So I had a shower nurse twice a week for Dad and some help when he needed transporting to radiotherapy or had other specialists treatment for his cancer. And when he died I had a four hour minder once a week for Mum. Without that and the respite she got I would have gone purely out of my mind. Looking after an elderly parent particularly one suffering from Alzheimers, as well as a husband with fairly severe stroke deficits is far too much for one person to do so a carer and some respite was really needed. In 1999 when Ray had his major strokes and stayed 4 1/2 months in hospital he had just got home when I got a phone call from Dad saying: "You had better do something about your mother because if this continues I am going to "top" myself." So I took them to live with me for a week, then sent them home. Dad broke his arm so I brought them back to live with me and apart from periods of respite here they stayed. I don't regret that, looking back I managed, hour to hour, day to day to keep them all clean, well fed and reasonably happy. I particularly don't regret having my Dad here for the last four months of his life. That time was really precious to me. I think it was to him too. Mum was no longer his problem, she was mine. So he could relax and just contend with his illness. Of course it was very hard work looking after three people with diverse illnesses, disabilities and needs. Dad slept out the back so I could hear him from the back bedroom which I shared with Ray. I got up a lot through the night as he lost his covers etc. I think a lot of the time he just panicked a bit and needed reassuring. Mum slept in the front room in theory but was up and down all night as she still is eight years later. She has the kind of Alzheimers which includes wandering and night terrors. She is "safe" in her dementia lodge now but then she was likely to do all kinds of things thinking she was helping me by cooking etc so I slept with one ear open at all times. But with the three of them I just did the best I could as every caregiver does. I would not recommend anyone looked after more than one person at a time. It is too big a load and you just can't give them all the attention they need as individuals. After Dad died Mum went into a mental frenzy and became very aggressive, distressed and difficult to care for. She never understood that Dad had died. She always thought of him as being "home" so would escape from me and walk home, six or eight times a day. It was only ten minutes walk away and on the same road so I let her go and retrieved her. In those days there was very little traffic on our road and she was "safe" to do so. Later I had to keep her here and that was much harder for me to do. So she went to Daycare and other respite places three days a week , then five and then into full-time care. It was a very hard decision to make so my heart goes out to all who have to make that decision on behalf of a loved one. There is no easy way to do it. It is simply a matter of deciding that the full-time care option is better than the care ONE person can give them. We are not able to stay awake day and night to care for someone so when it is obvious that more care is needed than is available then full-time care is the logical choice. When Mum went into full-time care in September 2001 I still had Ray to look after. Although he had his fourth stroke in May 2001 he seemed back to where he had been prior to that stroke within six months. He was much easier to care for then particularly as he could still walk reasonably well and for a short distance. Which is why we were able to do the twice yearly coach tours. He still had common sense, he could still hold a conversation. He was still interested in the running of the household and was still reasonably active. He had the ability to do things like make the beds, wash up, help with the tidying and cleaning. We were able to go on coach tours and driving holidays with me driving. We had one attempt at camping, but my failure to put up the tent properly combined with wet weather made that our last attempt. When at home I was still able to go out for walks in the afternoon when he was in bed. There was a lot more free time in our days as we were sharing a lot of the chores. And life was pretty good there for a while. We were much like other early retirees, able to do charity work in a limited way and join fully in activities with friends and family. But the 2005 stroke, which seemed to leave Ray with few extra deficits was also the start of his vascular dementia so his physical and mental decline became more apparent. I could no longer go off and do things by myself, and he no longer seemed as motivated to exercise, to help around the house or to show an interest in what was happening around us. It is hard to explain how dementia limits the activities of the sufferer so severely but it does. In a way it is like a fog coming down over a sunny landscape, the fog lifts from time to time but the feeling that life is good has gone. I struggle to make each day seem worthwhile. Sometimes we have really good days. And sometimes we just get through the day. So now Ray has have a shower nurse on Tuesday for an hour, Thursday for an hour and Friday for an hour followed by two hours respite. Ray also goes to Daycare on Mondays, 9.30am - 2.30pm. On the Tuesdays and Thursdays while the shower nurse is here I go for a walk. I have 20 minute, 30 minute and 45 minute walks I do. If the shower nurse is running late or needs extra help (a new nurse coming in has to be introduced to the shower room, where the towels are kept, Ray's dressing routine etc) I just do the short walks. Today I did the longer one which includes a fairly steep hill. That is when I feel my age. I am sure it does me good, keeps me fitter and healthier but boy! it also zaps my energy too some days. On Tuesdays the shower nurse is here from 8.15am till 9.15am. That is pretty early for a guy like Ray who would really rather sleep in. I like him to be up, dressed and have had breakfast and his meds etc before the shower nurse comes so it is an early start to get all that to happen. I start the day by waking him with the greeting: "Wake up Ray, it is Early Jeff Tuesday". Jeff used to be our shower nurse, sometimes still is but on Tuesdays usually isn't. But I can't change the name each week so "Early Jeff Tuesday" is still the Tuesday morning greeting. Thank goodness for Wednesday and Saturday which are often our sleep in days. Then Ray can leave getting up till after 8am. Later than that and there are other unpleasant consequences. Let's not go there! .

(((Hugs))) :welcome: I am just going to tell you: Use what you have. The rest will make sense at some future date. Sue. :friends:

This is the Anzac day long weekend here in Australia. Friday was a public holiday to honour all our past service men and women, particularly those who lost their lives in wartime service. We started off by remembering the Anzacs, the Australian and New Zealand Army Corps ( and all the other forces) who served in the First World War. And then along came the Second World War, and Australia has been involved in many other conflicts since then. So I guess Anzac Day here acts as Rememberance Day does in other countries. A day when we honour those who fought to keep us a free country. Of course in the actual march that takes place in a big way in the capital cities and in a smaller way in villages, towns and cities thoughout our country there are no soldiers, sailors, airmen etc from the First World War, and fewer each year from the Second World War, but there will always be men and women to march. Unfortunately there will always be conflicts on our fragile planet, and is some ways we will always be called upon to defend the weak, rallying alongside neighbouring countries, our traditional allies or trading partners to fight a common foe. In the Bible it says: "there will be wars and roumors of wars" and that is pretty right. There will always be those fighting for freedom, for land, status or some other good cause. Why? Who knows? Cleverer minds than mine have asked such questions since primitive times and there has never been an answer that would put an end to wars. Our days of joining the march or watching as the Dawn Service took place has gone. As we had Cubs, Scouts and Venturers (boys) and a Guide and then a Venturer ( our daughter) we had times of getting up in the dark and going off to the Dawn service. Ray wasn't in the Forces so he never marched but my late Dad marched every year first in Sydney in the "Big March" and then later at one of the local marches. That happened until the last few years when he was too stiff and then too old and frail to make it. So we sat beside him and watched the march on television, listening to the commentary and Dad's cry of :"I think that was old George on the end there, of course I could be wrong..." This year we have a new event starting as our grand daughter joined Joey Scouts and marched for the first time in the 10am march in our local town. It was raining so we didn't go in to see her but if it is fine next year we will make the effort. She asked her Mum why she was marching and was it important? Her Mum said it was important as she had people in both sides of the family who have served as soldiers ( my Dad), sailors ( her Mum's Dad) and in other ways. My Mum worked in a munitions factory in England throughout the war working on a lathe to make airplane parts as did thousands of other women. My Dad's Dad served in the Boer War and the First World War, Dad and Pam's Dad in the Second etc. My Dad was a POW in Germany for four years and didn't get back to England till six months after the War had ended. All of them made huge sacrifices to keep our world safe. Our daughter and son-in-law were both involved in Anzac services in Cairns. As Salvation Army officers they too uphold a long tradition. Many a weary soldier has been greeted by a "Salvo" with a cup of tea and something to eat, sometimes far too close to the front line my Dad used to say. So many soldiers have a soft spot for the "Salvos" and that continues right till today. Shirley says it is a humbling experience to listen to the old soldiers stories and realise the sacrifices they made, often at such a young age too, "to keep Australia safe". The rest of the weekend is really for reunions, family gatherings etc. This year this weekend is also Orthodox Easter which will make certain places busier than usual. And co-incidently it is also the last weekend of our school holidays locally, so the fact that it is NOT raining today after 12 days of rain straight is probably bringing rejoicing to a lot of households. No flags flying today but a lot of sheets flapping in the breeze on clotheslines all across the countryside. Ray and I went out with some friends yesterday afternoon so are taking it easy today. We spent some time after lunch on the verandah, reading side-by-side. I like to spend a little time with him doing something special every day. Sure there is a lot of work to do here but there has to be down time too, so if it is fine and sunny as it was today there is plenty of time to sit and contemplate the view, have a "cuppa" together and a bit of light conversation. After all it is forty years coming up in July.....

Wow, big decision to make, both moving and moving back in with your husband. I hope that all works out for you. But please keep in touch with your cyber family on this site, you need us and we need you. It is that mutual support that has made a difference in so many lives. If people leave then that support is lost and we are all poorer for that. The blogs are important as a means of writing down what is good or bad in your life. Nothing like looking at something in black and white to really see it. And changed behaviour often comes from just seeing who you are, your pure self, in a different light. I want to just say that you HAVE come a long way in your development and maturity. I think being on your own sometimes can make you firm up some of what it means to be YOU. (((Hugs))) from Sue.