swilkinson

I hated changing carers and when Jeff went off our program life was never as good again as he was a gem, but I must admit some of them were less competant than others. Some of them did bring some fun into our lives with their sense of humour and others became friends because of their willingness to share with us some of their life stories. You still have Cathy but will now have to find a second person that will fit into your routine. I will trust your ability to find that person that will restore balance to your lives, as a person wo has worked with people for so long I know you can do it. Give some thought to the fun element of your lives, life should have it's happy highs for us all to look back on with a smile. Sue.

George, age wearies us all. I find I plan one big item a day washing, ironing, cooking to freeze etc and then fill in the rest of my time with little jobs, I no longer clean the house in a day like i did on Saturdays when I worked full-time. I'm glad you are still doing the camping/canoeing trip with Lesley, you have to keep building those memories. And fishing, wish I had a companion to go fishing with...maybe one day. Sue.

Jamie, I understand the sensory overload as Ray had that but he also had me...I would say: "come on honey you will enjoy it when you get there". I didn't want him to become a prisoner in his own home. I would make sure I acted as a buffer between him and the world, found him a quiet corner, brought him snacks etc. I wish I had some words of wisdom for you but I don't. Just sending you a (((hug))) as that is all I have. Sue.

Leah, you are a great friend to have and a real prayer warrior. I am so glad you have the inner strength now to give such support to others. I will add Nicole to my prayer list. Your exercise regimen seems really good and I hope the energy you will get as walking etc gets easier will mean you have a renewed interest in life and give you plenty you do to make it a good summer. Sue.

Oh yes, Bruce is very much affected by the peripheral events. They impinge so much on his health and welfare. You are central to his well-being but so are the caregivers in a lesser way and so what troubles them troubles him. So maybe soft pedal a bit on telling him what is going on. I know if I did that to Ray in the early days he would switch off, turn over and plan to sleep his life away. I am sorry about what is happening to Leo, it is life-changing for him and some of that will echo back to you and affect your lives too. Just hope that he can replace the hours he had with similar hours elsewhere so he can continue on with you. Bruce needs that continuity. AND do get someone else who will drive and direct the swimming if you can, you cannot do it all alone, you are not Superwoman. Sue.

I spent about an hour and a half with Mum this morning. Some weeks I feel as if I have short changed her as I've rushed off here and there doing stuff for Ray but not done anything at all for her. There is a young 30 something diversional therapist called Rick who was on duty this morning. He came in to do hand massages on the group who to put it plainly are in God's waiting room and on the short list for Heaven. He said he'd planned to spend ten minutes with each person giving her a hand massage and talking to her as of course we all know that not everyone gets visitors. I thought that was a nice idea. He said he joined the team originally as a "lifestyle co-ordinator" and worked with the low care hostel people running games afternoons and bus trips and bringing in volunteer groups as concert parties. That was where the funding lay back ten years ago, keeping the residents entertained and making it easier to transition from home to care via respite. Of course in some cases, in the nursing home, he is still dealing with the same people, now grown older and more in need of high care. Some people spend a long time in God's waiting room. He also told me that his Mum who is in her early fifties is sick with a long term illness and is worried as his brother is developmentally delayed and in need of care himself so she, like all good mothers, is worried about what will happen when she can no longer cope. Rick said he will take over the care of his brother if that happens. A wonderful attitude in one so young. We have a lot of young Carers in Australia who take care of parents or siblings with long-term illnesses. Mum occassionally woke up and smiled at me. While she was having her hand massage I moved off to talk to another carer /wife who comes in every day to be with her husband. She is worried that his needs will not be met as he was born in one of the Mediterranean countries and English is his second language and he does not always speak or understand English now so she acts as his interpreter. What an extra burden that is that some people have to carry. At least both of my care recipients speak English. It is blowing a gale outside. The sky is a gorgeous glassy blue and it is snowing down south on the Snowy Mountains and the Victorian Alps, nothing deep enough to ski on but a good early start to the snow season as a tourist attraction. A powdering of snow looks so nice on the nightly news but the winds it produces further north really hit you when you get out of a nice warm car to walk into the nursing home. I could not take Ray outside at all today. His stroke deficits means he really feels the cold and tenses up and that makes the shaking worse. We looked out of the windows at the garden but could not actually go outside. I'll take him out to the courtyard again when the winds die down. I missed chatting to the couples we go outside with, I guess they were all in their loved one's room keeping warm. It is so much nicer sitting out in the garden, more informal and less like being locked away or "dumped" as a lot of people say here, in a nursing home. It is more like getting together with a few friends for afternoon tea. Or so I kid myself. I'm finding loneliness a big factor in my life now. I am okay through the day but with the shorter days, longer nights really notice that after 5.30pm when it is fully dark I feel as if my life is closing in on me. I do all the usual things after dinner like catching up on housework, watching a bit of TV, phoning friends. I know how to fill in time so I also knit, crochet and do beadwork. I sit and read and listen to music. But nothing seems to be the same as hearing another person moving about in the house or hearing a human voice. It is sad to think this is the rest of my life now but like the widows here I resolve to be better at this living alone as soon as I decide how to do that. I want to do more than fill in time, I want to actually enjoy living again. I spoke to one of the other wives yesterday while her husband was being changed and she told me her daughter found the nursing home for her father when the hospital he was in after multiple strokes told her it was time for him to be discharged to a nursing home. Then she found suitable accomodation for her mother and moved her in to be close by. I asked if it was a wrench to move from a home they had lived in to raise their family and she said no, she would have felt guilty living there alone and it was better this way. I think she is very brave to have made that decision. It IS very hard to decide what to do when the husband or wife you are caring for has to go into full-time care and we all treat it seriously if differently. Without knowing if or when it will happen it is impossible to plan for it but we can all in some ways be prepared for it. And be prepared to make some changes in our own lives if that is the way it has to be.

Lydi, I used to find that with Ray, we would go to the neurologist and he woauld say it is likely this is happening or that is happening. If I felt that was an explanation for something that was fine, it had happened, we had dealt with it. Sometimes I would not think what he said was right as Ray seemed to be getting better not worse. Ray's total damage has been over 21 years so I guess what you could say is that he has been lucky to have those extra 21 years. The past year or so he has had a lot of downturns due to the May 2011 stroke and the series of seizures so he is much depleted as far as what he can do goes. As you know he is in a nursing home now. But we can still have those happy days when we sit out in the sun together. He will be 70 in September and is lucky to have lived that long. If he had died in 1990 with the first stroke or in 1999 with the major strokes four weeks apart think of all he would have missed. I hope you find your mojo and go on enjoying life. Sue.

Its a switchback ride sometimes and your direction or that of your care recipient seems to change so many times. Reading back in my blogs over the last six years I see many time when Ray starts therapy, exercises more, gets better, slacks off, settles for TV etc, gets less fit. It seems as if there is a time of good results followed by a less active period and maybe that is how it needs to be. We are not training Olympians we are helping stroke survivors get fitter, a very different scenario. Debbie, remember to plan for some good times too, take Ruth and William as your example and try to get out and about as well as just going to the pool. We all need to put some time into simply enjoying summer. Sue.

I just heard some sad news. One of the couples I got quite fond of during the last three years that Ray and I went to Camp Breakaway were an ex-headmaster of a private school and his wife. She was/is the dementia sufferer, he the caregiver. I heard from a mutual friend that she went to his funeral on Thursday. The sad thing is that he is the second caregiver of my acquaintance this week who has pre-deceased the one they were caring for. Another timely warning that we need to take care of ourselves. One of my friends asked me what I was doing to change my life now I have " a lot of free time". Well I dispute the fact that I have a lot of free time but I agree I do have the opportunity to make some choices now. She asked me if I had taken up any new hobbies or gone back to any old ones? I told her there are a lot of events I would like to go to, I would like to do tai chi, swim in the heated pool, go to yoga, go to an occasional movie, meet up with girlfriends and maybe have time to have lunch out ,maybe even go to a live show occasionally. That is what I would have done if this caregiver's life was not all I had for the past twelve plus years. As I pull farther away from the full-time, hands-on, caregiver role I can see it in a new light. I can see the whole twelve years instead of the day-to-day workload. For a long time I was so busy keeping up with all that had to be done that tomorrow seemed a month away and back beyond yesterday was ancient history. I think that is the way it is for all caregivers. We get so immersed in the day-to-day routines and those things that have to be done that the big picture is out of sight and we just see the way life is today. I am not saying that is a bad thing but that it is the way we survive. I am wondering how apparent that is to the people I post replies to on the board. I start a reply and think: "She doen't really need to know that" or "Is this how I felt when I was in her place?" I am starting to lose that hard edged feeling, the soldier on the battle field has become the clerk back in the barracks recording the results of the battle rather than being right in the thick of it. So is my opinion really relevant now? I hope so, I want to keep on being a help and support but don't know if I can be. My role now is more in supporting those I encounter at the Nursing Home and those who are still engaged in fighting against the ravages of stroke or dementia are not really the central group for me now. Over the years I have heard a lot of advice from widows who have nursed a sick husband or old parents and appreciated the time they have taken to give me encouragement and advice but wondered if they knew exactly what I was going through. The answer is: of course not. No-one can know exactly how we feel, all they can do is remind us that many folk have been in that same position and somehow come through the traumas and the dramas and here they are today, survivors or that battle. I have just got back from seeing Ray. He was sleepy today and very slowed down. It took him about twenty minutes to eat a plate of pureed food as he scraped up a spoonful, looked at it for a while and then put it into his mouth. When he got his head down almost level with his plate I took over. After lunch I took him outside for a while for a breath of fresh air but there was cloud building up and the temperature dropped. Again in the loungeroom he sat with his head down, sleeping on and off. I asked on of the aides about it and she said a lot of them seemed sleepy today, maybe because they had made the air conditioning a notch warmer. It could be just that but maybe another seizure or something approaching. I wish there was a way of predicting that. Last Sunday I was the preacher at the services today at my own service I was the child minder. I can always tell when Adele greets me: "Hello dear lovely Sue" that she has me marked down to take her place. As the Mum of two little ones she is subject to disappear back to the house when they have colds etc. and today was one such day. I don't mind. I made love hearts which we tied on a string, reminding us that God loves us. The little ones just need some colouring in and some craft to keep them happy. That allows their parents to sit at leisure and take in the service, to hear the sermon without little ones interrupting their train of thought. It is a good break for them. Another very elderly congregation member, one of those I take home communion to had died overnight so I have another funeral to go to later in the week. It is that time of the year for us, deaths among the elderly, another adjustment to make in who we go out to. I'm glad she was enabled to participate in church life through our outreach programs. And so I plod on, one day at a time, one foot in front of the other, deeper into winter.

Leah, this is a splendid blog and no way is it too long. You had to write a lot so we can understand how life is for you right now. Thank you so much for doing just that. I know a lot of us will have to go through what you have just gone through and I hope we can do it with as much grace. I am glad you are getting stronger, sad you have had to use so much of your limited resources to staighten out the paperwork that seems endless after a death, glad you feel some condfidence again. My friend it is so obvious you are a survivor in so many ways and I am truly blessed by knowing you. Sue.

Well Mothers Day is over for another year. I was fully booked doing the three church services plus Messy Church so I knew I would not want to do the traditional " it's Mothers Day so we will have a BBQ" day.I was busy all day from 8am with church events except for over the lunchtime period which I spent with Ray. I had hope for my grandson Lucas to come to Messy Church as he loves it but apparently he was out-of-sorts after a busy Saturday plus breakfast and lunch with his Nanny so got to spend a lot of time in his room calming down. I surely remember those days from raising our two sons. The services all went well. The three congregations were much downsized because of Mother Day but those who were there seemed happy with what I had to say and a lot came over and shook my hand and gave me compliments. I hadn't done a sermon since 2007 so was really nervous and very glad when it was all over. Until three months time when I will do it all again...lol. Our daughter, son-in-law and two children arrived here late yesterday evening. They had hoped to get here early enough to take me out to dinner but got stuck in traffic behind a road-blocking accident so arrived 2 hours late. It was too late to go out to dinner by then so we had an improvised meal and they all went to bed, tired out by their big day. It was lovely to have them under the same roof with me. Today I cooked them a BIG breakfast and then Shirley and I went to see my Mum while the kids stayed home with their Dad and played Wii games, I have a few they don't so they love to raise their scores on them.Craig was tired from taking his own service at the Salvation Army, then driving two hours to where his brother lives in Sydney, having a late family lunch with his mother and brother and then continuing on up here. I guess Craig needed that rest. Mum was a lot more alert than usual today so she responded to Shirley by looking at her and murmuring so giving the impression she was talking to her. She also smiled a couple of times so Shirley was pleased. She had been here three weeks ago but was unable to see Mum because of the facility being locked down which had so disappointed her. We returned home and picked up the family and went out to Ray's Nursing Home. It was close to lunchtime so I asked for tray service for him and we took it all down to the park behind the facility. The children went over to the Pharmacy for ice creams and brought one of the usual ones in a tub back for Ray so he had main course, dessert and the ice cream. I think that was a pretty good effort. The kids had a play on the climbing equipment in the park and we spent about an hour talking to Ray. Shirley loves her Dad so was very happy to be able to spend some time with him. It is hard for family members who live some distance away I know. After we left Ray they took me to a nice restaurant overlooking the water in one of my favourite spots for lunch. I know it was a day late as it is the day after Mothers Day but I reckon we all did very well, the food was good, the company was great. We were able to enjoy a nice lunch without the crowds who would have been there yesterday. The children of course were just happy to have had an extra day off school making it seem like a long weekend. It was a slow Mothers Day for me yesterday family wise but with all the other things I had to do better to celebrate it on Monday rather than Sunday. And at least our daughter got to see her Grandmother and her Dad at last. And I will see both the boys next weekend. We might get that BBQ yet.

Condolences Fred to your dear wife and her extended family. What a tragedy! So sad when the caregiver predeceases the one they are caring for, but it does happen a lot here too. There is only so much worry a body and mind can stand. Travelling blessings too, 525 miles for a couple of days away is a long drive in any country. I will be praying for you all. Sue.

A good night's sleep is such a bonus. Try to get as much as you can as many nights in a row as you can, it will make such a difference to your day. I hate politics in the workplace, makes it harder all round. Do you have a spot where you can leave your problems until the following day? It needs to be just inside the door. For instance, come into the house, open a drawer, brush your problems off your hands into the drawer, pick them up again when you go back out the door to work. It can make a difference, believe me. Sue.

Ruth, you use the "tough love" approach and that seems to work with William. I used to do that with Ray too, negotiating what I would do compared to what he needed to do. Mostly that worked but sometimes he would switch off and not do anything. I like that you find new exercises for William to do to stretch lesser used muscles and get them working more efficiently too. It makes exercising and improving more challenging but I think that is needed too, the same old exercises done over and over gets boring. Keep up the good work. Sue.

When I got to the nursing home today the assistant to the physiotherapist came to see me and said she was concerned about Ray's right shoulder as he is again complaining of pain there. I told her about the episode ten days ago when I found him leaning over with his right arm draped downwards and his hand reaching the floor. She said she knew nothing about it so it either wasn't documented or not brought to her attention. She said she would look into it. She came back later and asked to borrow him for five minutes to go through a range of motion exercise with him. When they came back she said there were definite changes in his abilities and what would I like to do about it? I suggested that she just keep up the exercises and wait and see. I think it is too late to do a lot of things for Ray now, if there has been a new problem with his shoulder an operation would not be the answer anyway. It seems as if I just get complacent about his condition and something happens to wipe the smile off my face. They use a protective sling on his stroke affected left arm as without it that arm just dangles down now but his right arm needs to be kept strong, that will not happen if he has some problem with his shoulder. I am wondering if there has been another fall I have not been told about, it seems not everything is documented as it should be. It was this time last year when the problems that led to his hospitalization and consequent nursing home placement started. I know his conditions are all sequential and ongoing but it is so easy to imagine on his good days that there is nothing much wrong with him and it is all a lot of fuss about nothing. And then along comes another problem to reaffirm that he is a sick man, it is progressive and here comes another bump in the road. The visit to Mum was good today, I managed to give her her morning tea drink. She was a little difficult to wake up but I managed to do it. I left her in the big hall with the "church service" just starting. The organist started to play and her left foot started to tap in mid-air, she can still hear that music. I encountered a former nurse from the Dementia Lodge who remembered me and said she is now working one day a week as a pastoral care worker in the Nursing Home and has visited Mum who she is quite fond of. Good to know that old staff members still think of Mum and remember her as she was in times past. I went to a funeral this afternoon, the lady who did Sunday school before I started a couple of years ago died last week. Her death was the result of breast cancer, she was only 69, the same age as Ray. With her daughter married to a new Zealander the singing was good, the Maori people like the Pacific Islanders can really sing. Her grandson who used to come to Sunday School when he did a sleepover at his grandparents place did a part of the Eulogy, and did it very well. It was a sad day but they made it a celebration of her life. Our church ladies provides a light meal after the funeral and that was much appreciated. We are constantly reminded that "in the midst of life we are in death". In both nursing homes I see new people and know that someone else has passed away to make their place available. Autumn reminds us of death as Spring reminds us of new life. But in another three weeks, after the official start of winter, I will have a new grand baby. Edie is keeping well, I spoke to her on the phone tonight and she said they are almost ready to receive the new little one into their home. She is tired and Trev is working a few extra hours every week now he is settled into his new job and is on the machines again so he is tired too. I try to maintain hope, sometimes it is hard as I see the deterioration in Ray and Mum slowly slipping away but I think of the new life to come, the little ones I already have and pray there is still a lot of time ahead for me when I will be here to see them grow. It is the constant hope I have, my wish for the future. I also have to remember that we as a family are loved by a lot of people. I am so appreciative of those who pray for us, here in our real life and there on Strokenet too as so many pass on their loving thoughts to us. It is a great encouragement to me when so many others have problems of their own and still remember us in their prayers. Today we had the fifth hottest day of this year! And it is almost winter! Such topsy turvy weather! I managed to get Ray's right ear sunburned as he was sitting as I thought under the shade with a peaked hat on but of course his ears were exposed to the hot sun shining through the shadecloth "sails". Silly me, I should have taken in one of his Akubras. I would do only the chances of it going missing is too high. I doubt we will have many more of theses warm days but today was a beautiful day.

Behind a lot of our old fashioned Pubs was a beer garden. Sometimes this was just a few chairs and tables and colourful umbrellas to shed a bit of shade, sometimes a covered area that might include a BBQ , sometimes a well-planned, shaded area with swings for children as well as chairs and tables, a garden and some ornamentation. Sadly all of this has often been allowed to fall into disrepair with overgrown gardens and rusty broken furniture. As non-drinkers Ray and I would still in our youth join friends in a beer garden for a hasty, tasty lunch or a few beverages on a hot day. Often at the end of a shopping trip on a Saturday morning that was where we would meet together with other friends we had bumped into while shopping as they had a beer or two and we had a fruit juice or lemonade.That ended when our group of friends married and had children and those afternoons were replaced with an afternoon at the beach or a picnic in the park. I had almost forgotten that part of our lives when I overheard two of the nurses discussing the "ones who go to the beer garden".It seems that is what they call the group Ray and I often join under the awning at the end of the courtyard that Ray can access from his room. There are mostly five couples who are there regularly but others join us sometimes and there are others who come there when they have a daughter or son who smokes and needs to be outside to do so. It has become a support group in a way as we mostly women caregivers learn a greater patience and acceptance together. I know none of this is permanent as of course those we care for could deteriorate rapidly or die and we will not continue to see each other but for now it is a good thing for us to be able to draw some strength and comfort from each other and find that good things can come out of bad. I understand the staff naming it the "beer garden" as some of the residents and carers do smoke and yes, in summer a few alcoholic beverages were partaken of by those who found it beneficial. That in itself allowed them to live a small part of what for them would have been their "normal summer". I have become quite attached to some of the residents and staff members. Of course those in Ray's room I know the best. Some of the residents I got to know when Ray first entered the facility in September have already deteriorated a great deal and owing to age and infirmity no longer leave their rooms, others seem to have stabilised and do come to the dining room for lunch every day so I see them and talk to them on a regular basis. Some of them, with physical rather than mental incapacity can still hold a conversation, share a story or a joke so it can be quite a lively encounter. I have staff members now who automatically bring me a black coffee as soon as Ray and I get settled at the table so I sip that as I asssist Ray to enjoy his lunch. I suppose you could say I have accepted the placement now but life is never that simple is it? I still have sudden crying episodes, times when a song, a fragment of conversation, a resurfacing memory will just see me overcome with emotion and I will have to find a quiet corner to blow my nose or go off to the Visitor's bathroom to wash my face and give myself a few deep breaths. The road to acceptance is always like this, a day of smiles, a day of tears. Ray's health continues to be up and down days. Sometimes I cope better with the rollercoaster than other days. Some days I want to know that everything is Ok before I go into the facility so it takes me a lot of self-talk and a few extra minutes to get out of the car and go in. Other times I am sure everything is okay and really it is not so and Ray is shaky, or having coughing fits through lunch or dirty and smelly and it is a very unpleasant place to be. But on the whole we are both coping better now. Mum is mostly okay and the time I spend with her is routine, either she is awake or asleep, whichever is her state when I visit I stay for as long as it seems feasible before I drive on to visit with Ray. I don't have any worries about how long I stay or how short the visit is, it is what it is. I love it when she is alert and i might get a smile but she is far advanced in her Alzheimers and I accept that those times will be rare. I go to see her, to check on how she is, to liaise with staff, to check on her clothes and her other needs. Her journey with Alzheimers has been a long one and is not yet over so I have to do those last things for her sake. She is my precious Mum and it is right that as her older daughter and main supporter that I do so. Sometimes it would be lovely to revisit one of those old fashioned Beer Gardens of my youth, to eat drink and be merry and join in the laughter and happiness of being newly in love and optimistic as only the young and carefree can be. Maybe in heaven there is a corner that is like that, where old friends meet once more in carefree good spirits...I hope so anyway.

Debbie, it sounds as if you are starting to relax the schedule a bit and that is good for both of you. Ray and i went through this happy stage for a while after the 2001 stroke,it began just after the rehab finished. It was a good summer for both of us, with more fun and less stress. We even got in a few weekends away and a couple of holidays. It was a time of greater contentment and I think set me up for what was to come. You deserve to go back to being a more relaxed and contented person now. We appreciate the effort that takes but it is truly worth it to build up some good memories and remember once more what it is like to not be only a wife and caregiver but just a member of a couple - Debbie and Bruce. Sue.

I've just read some blogs from April 2006, six years ago, I have been blogging since August 2005 here so if you want to read back it will take you a while. Six years ago Ray had slight signs of dementia, was finally doing his leg exercises and we were doing quite well. We were looking forward to a new grandchild (Alex born in June 2006) and Ray was off to Camp Breakaway for three days to give me a break and the opportunity to have some "Sue time". As usual at the end of the blogs were the kind and thoughtful comments. That has always been the big bonus of blogging on here, the thoughtful way in which people read and reflect on what is written, it is better than therapy. Thank you all so much to everyone who has supported me in this way over the years. Today when I found Ray at the Nursing Home he was sitting in the loungeroom in his wheelchair almost toppling over with his head lolled outwards on the right side and his right hand touching the floor. When I moved his arm he yelped with pain. Not good. I finally got him fully awake and upright but it was time for lunch by then so I didn't go to see a staff member to see if anything had happened, like a TIA. he certainly seemed vague and spaced out. He seemed almost unable to raise the spoon to his mouth today so I borrowed a second spoon and helped him scoop up food and negotiate it to his mouth. In the end I leaned against him to keep him upright which allowed him to move his right hand and shoulder more freely. I did go and see one of the staff after lunch but unfortunatley the only nurse on was attending another resident who had had a fall so I didn't get to speak to her myself. In the end I decided that Ray would be better off in bed and I asked one of the aides to put him in bed for me. I think maybe life now he is out of quarantine ( the NH opened on Friday) is probably busier than the preceeding two weeks and maybe he is more tired and making an adjustment to that. Or maybe he has had another TIA. Either way bed rest will do him no harm and may improve the situation. And although the day started out with watery sunshine the wind came up, heavier rain fell and honestly a day in bed may be a good use of time. I'm tempted to take it up myself. My son Trevor was out of work for a week. His job that was supposed to last three months had lasted for eight but it was still a blow when the boss said he was putting him off due to lack of contracts. He didn't have a week's holiday but he started to look for work and on Friday had a second interview for a job which he will start on Monday. With the expected birth of his baby due the first week in June he needs good steady employment so I hope this job will provide just that. Edie is off work awaiting the birth so she is only on basic pay as part of her maternity leave so they will really depend on Trev's wages. Mum is well, I saw her several times last week and she did have some periods of being awake and alert which was good. I have filled in some of the paperwork needed to go into her Nursing home with Home Communions and should be able to set up appointemnts next week. The NH has to have a clearance from the Federal Police so they know I am not an axe murderer or a threat to their seniors... another instance where too much paperwork discourages people with the time to do so from being volunteers. I also got paperwork from Ray's Nursing Home and theirs is a large multiple page booklet much like an employment form so I will take a while to fill that in. I was a server at church this morning. I got a good report from my observer other than for being in the wrong place. We had two clergy this morning instead of one so I was trying to keep out of everyone's way. She said I did well apart from that so will soon get rid of my "Learner's" tag...lol. It is good sometimes to take on something that stretches my mind a bit as I need to get back to something like my life used to be. I might even go back to study if I can work out how that will work in with my present responsibilities. I don't want to do anything that will mean giving less time and attention to Ray. I went out with the WAGS (stroke support) group yesterday and was conscious of being on my own as the other caregivers fussed over their survivor. The others were happy to see me and asked after Ray but I felt strange being there without him. It is all a learning curve and as usual I will battle my way to acceptance as I have done so many times before.

Fred, you are talking my kind of talk. We call them Outdoor Markets here and they probably cover a smaller area than where you went to but fun just the same. I love the corn too, and a stop for a coffee and cake if there is something I fancy. You are out in the fresh air and have those chance encounters with strangers while you wait to be served. Glad you had a good day. Sue.

I know that feeling of looking for a reward - boy I could have used a miracle from time to time. We had some periods in Ray's stroke journey when the illnesses came so close together it was like the domino theory. Then I'd pray: "Stop, give me a break" and sometimes that worked. Like you I felt like Ray had become Job and I was Mrs Job, watching it all happen and sharing the pain. I think you do get stronger as the journey continues. I've always questioned the "we've done all the tests" reassurance by asking exactly what they were testing for and how they had eliminated each possibility. I found that way sometimes they would do one more test as they thought of something elsethat might be causing the pain. This is putting a mighty strain on all of you so maybe think of some kind of treat for all the family. You can be the rewarder and remember to make a treat for yourself too. Sue.

Lynn, hope you have some plans for your birthday, even if it is just a cupcake with a candle, a vase of flowers picked at the wayside etc. Doesn't have to be a big celebration, just something to give your spirits a lift. I have had some computer troubles, son talking seperation, Ray "locked down" in his facility, Mum in hers, gets kind of "ho hum" doesn't it. Happy Birthday anyway. Sue.

Katrina, for some keeping on the road to happiness is a constant struggle and I think that is the normal" for them. You keep active, keep busy and you will be fine. Don't compare yourself with thers so much as strive to be the best you can. (((hugs))) from Sue.

Ruth, keep up the exercises as long as you can get William to the pool. With ray in full-time care now i hear so many visitors say : "If only he had kept up the exercises things would have been different" and I believe them. You do such a good job with William and we as observers here applaud you for it. Sue.

Prayers coming from here for Tootie also, and you and her family too. The sound of brain surgery is scary but at her age the damage can be fixed and she hopefully has a good life ahead of her. (((hugs))) from Sue.