swilkinson

Jan, I am a caregiver, as you know, and have been looking after Ray for nine years now. I get tired, I get frustrated, I get anxious and sometimes I yell at Ray. And like your friend Debbie I holler when I am frustrated by blocked aisles and things placed awkwardly in stores so I can't get Ray in the wheelchair to somewhere he needs to go. I know I embarass him sometimes but all we need is a little consideration. You did have a day of mixed blessings as we sometimes do. And yet in order to have the great patience we need to get through life I guess days like this are instructive and necessary. I'm glad you didn't seal the deal with a shop assistant who couldn't give you the respect you deserve. He needs a few lessons in life I guess so he learns to treat all folk the same. Keep using those wings to soar Jan. (((Hugs))) from Sue.

Ray and I have been very social lately. We go through periods of having invitations and some of them we accept. It does depend on the time and the place, for instance morning is better than afternoon, lunch out is better than dinner out. The venue is important too as Ray doesn't manage stairs but if there is a lift that will fit him, me and the wheelchair, no problem. This does mean some places are just not accessible to us. This past couple of weeks we have been out to both regular happenings, like our Apex 40 club dinner and our Lions Club dinner, and to a couple of parties. One was an engagement party for a friend's daughter. So Saturday afternoon we were out at Peats Ridge, where the hot air was blowing off the bush fires in a nearby gully,that started about the time we got there. There was no real danger as the wind was actually blowing the fire in the opposite direction to where we were, it was only afterwards I realised we would have been in real danger if the wind had changed. It was noisy with television crews in helicopters hovering overhead trying to film the fire and the men rushing off to monitor where the smoke was coming from to make sure we were all safe and didn't need to evacuate but we still had a lovely afternoon. By co-incidence four people I knew, from four different periods of my life, were there as guests so I spent most of the afternoon catching up on their lives. One of Ray's cousins was also there so they caught up too. Most people who know Ray are starting to see the changes in him now, in a strange way a few more seem kinder, maybe it is because they are aging themselves and maybe a little more appreciative of the frailties of the human mind and body. Pity we don't go through that about 21 so we are nicer people for the rest of our lives. Today we went to a lunch put on at Camp Breakaway by one of the organizations that use it. The lunch was funded by a government grant and was aimed at getting more carers to accept assistance from this organization. It is hard sometimes to get people to swallow their pride and take up offers of assistance. I know it must be harder for some than others. A couple of the care recipients were from good backgrounds, one a retired police inspector, another a lawyer, but they both had dementia and wives that were finding it hard to maintain both caring for them and keeping up with lifestyle changes. I think we get invited to things like this because of my wide range of experiences with welfare situations both from my background of chaplaincy and working for Social Security and my experience as a caregiver to my parents and to Ray. I can appeal to people on several different levels. Again I found a couple of people at the lunch that I had known from past association. I am finding more and more that a person from one part of my life will suddenly appear in another part of my life. It is not so much that it is "a small world" as we say but sometimes as if we somehow trail friendship threads that from time to time pull us back together again. Or that is my theory anyway...lol. Perhaps sometimes there is an attraction as though people find us again because of some wisdom we have that they now need. Of course some would call that God's guidance. Like everyone else we have been watching the trauma of the bush fires that have claimed so many lives in Victoria. It is more than 800 miles south of us but I guess it is galvanizing the nation. Many good points have come out of the news coverage and discussions some of which are....to look at how we keep ourselves and our loved ones safe, to think about what emergency plans we have in place, and maybe even to keep closer tabs on the ones we love. So sad to find someone you love by looking through a list of victims of a bush fire instead of finding their name in the phone book and giving them a ring as happened to one estranged father. The big events of life certainly give us food for thought. I don't want to go into all I have been thinking here but I am aware of a whole new set of thoughts particularly about our mortality and making the right moves while we still have the time and energy. It really is too late when we are in a hospital bed with tubes coming out in all directions to wonder what we could have done better. In a bush fire money and wealth meant nothing, having an expensive home didn't save people from the fires, intelligence often failed them too. I guess you could put who lived and who died down to making decisions that either lined up or didn't to take them to safety or leave them in peril. Are there things we could have done to prevent this tragedy, or strategies we can put into place to prevent it happening again? It is certainly something to reflect upon, as a nation and as an individual.

Wow, give Sam a hug from me, I am so proud of her. With determination she may be able to reach her goal and walk again. Have you read Aussie Ken's blog? He has finally overcome the balance problem but it has taken many months of hard work to do it. The boat sounds good for a fishing expedition. My Ray was a Fisheries Officer for 14 years so we had endless adventures in boats. He did buy a boat when he left that job but it fell into disrepair and eventually, after the third stroke, I disposed of it. It was sad though when I realised all that was in the past for us. Gotta love that dog of yours. Seek warmth, ignore the consequences! Good fishing my friend. Sue.

Wow, Fred, your blog blew me away. You are so sincere in all you do and say. I respect that. I am mostly Anglo Saxon and was born in England to English parents who migrated out to Australia when I was seven. I live in a land now that had a population already when the first colonists came. No-one quite understood the scattered native tribes, how they lived, how they cultivated by fire, how they lived off the land. The new settlers decimated the original population and in some places wiped them out all together. Now we, as Australians, are trying to reverse some of the damage done but there is a long way to go to restore what is lost. I can't say I understand what you have lived through, being the 18th child, born to parents already old. What I can do is commend you for your dignity and honesty and loving kindness in the dealings that you have with others. With little education themselves they still raised you to be a fine man. Sue.

Fred, the photo of our house we saw was taken last year sometime as our next door neighbour's fence had still not been replaced. It was blown down in wild winds about last September. You can clearly see the elephant in the front yard at our house though. Trev was just showing me a few places using the Google earth site, it is quite interesting. Thanks for the thought. Sue.

I went to my dementia support group today. Although they meet twice a month I only usually get to one a month, too much else to do with my Fridays after all I still have Mum to visit, shopping to do etc in the three hours I have a minder for Ray. I was pleased I went today though as one of the assistants to the mentor was doing a kind of revision on the skills needed for caregivers who help to manage the life of someone with dementia. Like Ray some of the care recipients have also had strokes so we are all on the same kind of journey. All trying to do our best to keep the one we care for alive and happy. And that is no easy job. On the way out I passed the access point to the sewer, we used to call them "man hole covers" I don't know what they are called now. This one had a sign across it, it read "confined space" and I thought how apt that was as a description of a caregiver's life, of my life. My life is a confined space. Sure it can be a happy, sunny space some days, but it is also a hard-to-take, grindingly boring space other days. My world is limited by the tasks I have to do and the time I can use for myself, by the time I spend looking after Ray and the time I can spend away from Ray,doing the things I want to do. The tasks I do here are mostly those of a normal stay-at-home housewife plus the extra jobs a person without a man around the house would have to do and then there are the jobs associated with looking after a semi-invalid. I guess caregiving tasks vary, with each caregiver doing tasks from an endless list of possibilities. Whoever you are caregiver for it is always over and above the work done by others who have a healthy spouse. There are always extra jobs to do here, extra washing, extra cleaning, food preparation etc. I have to do special shopping and with all the doctor's appointments etc it seems to entail more driving too. I am not complaining, this is not a vent. It was for a moment a recognition of what my life is like. And I think that is healthy, to know what life is like and to just get on with it the way it is. You all know how much time I spend trying to change things, reason things through etc. Today I just acknowledged something and moved on. This afternoon I had a visitor from another site I belong to, she lives about two hours drive from here and we met last year too. We talked over the way we handle things with the dementia, I can use present examples of how I deal with Ray and past examples of how I used to deal with Mum. She looks after her Mum who has dementia and also used to look after her Dad who died from a heart attack late last year. As we talked I thought how different we are, she is much younger, has a much different lifestyle, different values and ideals. What we have in common is being a caregiver to someone with dementia and that is enough to make us as close as sisters. Amazing what that isolating disease can do in bringing us so close. So we may be confined but we need not be alone or lonely. I'm glad I have this site and a couple of others where I have made some cyber friends who spill over into other parts of my real life, like Babs (BabsZ) and Eddie coming here from Oklahoma and my friend today coming from the other side of Newcastle. It is good we can make new friends especially as many of the people we once thought of as friends can have seemed to have abandoned us. I say "seemed to" as I know in some instances I am to blame. It is easy when you are a caregiver to become self-absorbed, locked in your own busy little world. I ring old friends and they say "what have you and Ray been doing?" and I have to think real carefully about how much of my life I am able to share with them. Some of them are sensitive little petals and mention of Ray's BMs, his problems with bleeding etc could offend their sensibilities, so I give them the refined, civilized version and then of course I feel they don't understand. Well how would they when I have been less than honest with them? So some of the walls of the "confined space" I have built myself. Tomorrow is a meeting of the WAGS group, the parent body of the Scallywags' Men's Stroke Support group Ray goes to on Fridays once a fortnight and then on to the engagement party of the daughter of friends of ours. We have been friends with them since before we were all married, so a long time. This is the only adopted child and she has had her wayward years so it is nice she is thinking of settling down at last. As we are old friends from way back in the past it will be interesting to see who else is there that Ray will remember. Sometimes when we meet someone I have to say: "look who it is, it is George, you remember George don't you, you and George you...." and give an instance of something they did together. I feel like an idiot doing it but it seems to work and gives them something to talk about. Just trying to keep the walls of the confined space as far apart as possible.

Just a tiny warning note....take it easy. Sue.

John, I am on the east coast of Australia, in New South Wales, our area is called the Central Coast and we are just over 60 miles north of Sydney where the 2000 Olympic Games were held. We are not called Down Under for nothing, we are in the southern hemisphere and our weather is the opposite to yours. You are in mid-winter, we are in mid-summer, it is glorious weather, hot, dry, well windy also in the afternoons. Down south in Victoria we have bush fires, up north in Queensland we have monsoonal rain but here in the middle of the east coast it is just perfect. So save those pennies and one day you might come for a visit and have an extra summer. Sue.

Debs, thanks for dropping into the chat with Kristen (givincare) today. It is good to chat with other caregivers. At times, as with Kristen and me, it is good to just talk over what is currently happening in your life. It can seem like nothing important, just the ups and downs that fill our day but we become like neighbours, the sort you chat to for a few minutes over the side fence. You can use your blog in the same way, to unravel your day or discuss something that is bothering you. Others will always be there to help, encourage and sympathise with you. We are like family here. I look forward to getting to know you better. Sue.

Hey John, you just come on here more often and don't be a stranger. Sure life gets busy but there should always be room in it For your cyber friends. Wish I could parcel up today and send it to you, it is fine and sunny with a sea breeze about 80 degrees. Sue.

More summer storms and I had phone problems for another three days. I didn't get to chat, I couldn't check my emails. I could just scream. We only had ten days of services before another storm took the phone line out. I do have a surge protector etc so it isn't supposed to happen. I get so mad when it all goes down especially because of our situation. I do have a cell phone for emergencies but people do worry if they don't see me on line or can't contact me when they know I am home. We have been busy the last week or so with visitors and events. On Australia Day we went to a family lunch at my sister's place when forty or so people turned up. We were there and our boys and our Wyoming grandchildren,Tori, Alex and Oliver, Pam was working (well someone has to...lol). All my sister's children were there and her grandchildren and spouses and some of the spouses parents, so it was a big family gathering. It had been so hot on Saturday, over 100 degrees (41 our temp) so we were lucky that by Monday the temperature had dropped back to a mild, warm, sunny day or we would have all baked. As it was it was a lovely day with all the cousins big and small having a great time together and the oldies chatting on as oldies do. There was a lot of food and fun as the kids had rides in a trailer attached to my brother-in-law's ride-on mower and the kids enjoyed a slippery slope game on a large sheet of plastic covered in detergent and drenched in water. There were lots of shrieks and cheers during that game but as it go late into the afternoon also some tears from the littlest ones. We all went home very tired. But that was just the first party that day as we also went to a party next door with fifteen people from the neighbourhood gathered on Brett's back area with barbecued lamb and salads and wonderful desserts. I had to take the bread so that was simple and easy for me to do. Ray went home about 9pm but with Trev's permission I stayed on for a couple of hours more. I loved the warm summer night out under the stars, it was nice to meet some new people and the conversation was good. On Tuesday I took advantage of a "three free sessions" coupon to my local Curves. I had never been there before so after speeding Ray on his way to Daycare I went and bought some joggers and went down to be assessed. Now I am short and fairly wide and far from athletic. I know I have some strength as I can pick Ray up off the floor when I need to. So one sweet young thing assessed me and another offered to show me the circuit. There is equipment for bending and stretching your body in all directions so Ann demonstrated and then I copied what she did. I managed to do one circuit, fifteen minutes worth. Next it was my turn to lead and she followed. I got most of the movements right, she just corrected my position. So around we went again. My heart rate was up a little now and I can say I was wondering if I was doing okay. Occasionally Ann said "good" or "well done" to encourage me. Then we got back to a machine that enables you to do squats. She said: "try that again as fast as you can" so I did and she said: "wow". We finished the circuit and she showed me how to bend and stretch to cool down again. Finally I was finished. We went back to the girl who had done the assessment and Ann said: "Sue has good abs and GREAT glutes." So there, a hidden asset I didn't know I had...lol. And I still have two free sessions to go! This time of the year we have our visitors as they come and go visiting family in the summer holiday season. Yesterday Trev picked up my cousin Marilyn and her husband who are over from England visiting her daughter. They came to visit us last year when they stayed with their daughter in Sydney. ( I wrote a blog on last years visit called "Just like her mother"). The visit was so much nicer this time around as we were like old friends catching up on what had happened in our families Today my sister came to lunch and we talked all afternoon. It was a great time. Marilyn works as a volunteer at her local hospital teaching stroke survivors simple cooking as part of their rehab so she was pleased to be able to spend some time with Ray too. Last year he was away at Camp Breakaway when they came. And we had a long walk on one of my favourite beaches this morning so that was a bonus too. Before Marilyn got here we had some other visitors, two couple who had been promising to drop by for a while finally made it over for afternoon tea. It was so nice to just sit and chat. It doesn't happen a lot and I am always so thrilled when it does. It IS so good to catch up with old friends. One of the men is having treatment for lung cancer and that has given him and his wife a new appreciation of what it is to be a survivor and to be a caregiver. That fellow feeling despite the differences in the diseases has made a new bond between us. AND Ray and I received today an invitation to a friend's daughter's engagement party and as it is on a Saturday afternoon we are able to go! Another pleasant event to look forward to. I just love these times when life smiles on us again. However gloomy life is we know there are always some brighter days ahead.

Wow, Jan, this is really so true, not only for the ones who are aged but for those of us who are tired and weary from the stroke survivor or caregiver journey too. Tonight we went to a party at the neighbour's place. It is just down our driveway, across the lawn and up the winding pathway and into his house. It took Trev and I, working both sides of Ray to get him to walk there. The exercise took us ten minutes to walk maybe 50 yards. Drizzling rain and wet grass complicated the problem. It is so easy for able bodied people to take a simple walk for granted eh? I have to remember that where I see a slight slope Ray tackles a mountain. Sue.

George, good to see you on again, I'm sorry to hear Lesley has been in hospital. Hugs to her from me. I'm glad to hear that the acupuncture and AFO combination have so improved your walking. That is great!! While you are having snow we are sizzling here. Today it is supposed to reach between 100 - 105 degrees and I feel it has reached that right now. All you can do is keep your fluids up and endure until it cools back down again. Good to hear of your friend "Mike"s determination. I always wished Ray had had the ability to recover as well as you and he have but alas! not all are able to. Back to Lesley's "honey do" list. Sue.

No, this blog is not a confession, it is an observation. To illustrate a conclusion I have just come to about why we are often not getting the support we think we deserve. I am reminded of a proverb: "Old sins have long shadows". In chat this morning the caregivers were talking about lack of family support and how one family member will often influence others in the family to keep them from supporting us. I am drawing a conclusion without much evidence here but bear with me. Before I went into chat I had a phone call from one friend talking about another who has once again fallen out with all her family members and is now saying how mean they all are. What she gets out of this beats me, but she seems to enjoy being the wronged party, the "poor thing" and sucks up a lot of attention that she would otherwise not get. I'm afraid I do the "dear me, you poor thing" less and less well these days. I know a lot of people have bigger problems and are expereincing real sorrow and I know from reading here how much REAL pain there is in the world. If we want to know why something is happening we often have to look at the past in the light of what we know now and somewhere back there will be the reason for what is happening now. The shining memories of good deeds, the shadows of bad. And sometimes, without wondering why, we are still influenced by some mis-deed that makes us think we are picked-on, less well-thought of than others, or in my case often thought little of. It usually has to do with something unresolved in our past. You think you are free of this? Think again. For a period of my life I called myself Sue Who? This came about because I worked in a place with a few Sues and something I had done got credited to another Sue, resulting in some embarrassment when she got an award she had not earned. Eventually it all got straightened out but the award ceremony was not repeated, in fact I never saw a certificate with my name on it. I guess it was not something others wanted to remember. Strangely from that incident I concluded that my work was not worth recognizing. Silly I know now, but that is the way it seemed at the time. Ray is not supported by his family. I know in a way this is because one family member once received a lot of support and immediately the crisis was over moved quickly interstate and started a new life. There was never a thank you or an expression of gratitude for what others had done. I think in some way this led the other family members to conclude that helping someone was not worth while. And so they each live like lone satellites floating in space, each family unit unconnected to the others, each concerned only with the welfare of their own descendants. My family taught me to help others, to be a strong person, to look after family members but also friends and neighbours too. This in a way was because we were a migrant family and needed to give and receive support among people who were not blood kin. And so I ran messages in my neighborhood, Mum gave the men haircuts in exchange for eggs or vegetables, Dad lent a neighbor a hand erecting the frame on a house and the man and his friends in their turn helped Dad etc. Not only were we neighbors but often much more than that, we became friends. Helping others without thinking of a reward is not completely selfless. I have got a lot out of life by being community minded and belonging to church groups and other organizations that I could see made a difference in people's lives. And I knew those letters of thanks we received were down to the collective effort of people like me - people who want to make a difference. I know we get called "do gooders" and other less flattering names but in a crisis it is to such organizations that we all go to get help. Here on Strokenet we extend the hand of friendship, share our experiences and give support to strangers who sometimes, somewhere through the process, become friends. We start out ourselves feeling friendless and unsupported, we find new strength through the support others show us, then we in turn go on to give support and strength to others. I know that in not what happens in every case but it is the ideal. I saw an obituary in the paper today, of a man we once called a friend and was reminded of a family scandal in that family that had scattered the family members. Each child's family remained unaware of their relationship, unable to be the caring cousins and kin they should have been. In reading further sadly the "donations to the cancer research foundation" told the ending to that story. I wish at some stage they could have forgotten past hurts and got back together. Maybe now the ones that remain will do that. We don't live in a perfect world, we are not perfect people but surely, in a tough situation, we can put some of our silly little differences aside and support each other?

Yep, angry works for me sometimes too. But then I have to back-pedal for a while to get back to where I would have been if I hadn't been angry and brooded and worried and let all that energy get zapped. I can't afford to get that angry feeling often as it takes too much out of me. I sometimes feel about my sister the way you feel about your Jackie's sister, I feel she simply doesn't realise what is involved and what is more she doesn't care. This is not about my husband it is about our mother, who I had living here for two years and now she has been in a Dementia Lodge for seven years. My sister has visited her ONCE in in the Dementia Lodge. BUT I have to go on from day to day, believe that I am doing my best, believing that if there was someone more competent that they would be doing this, not me. And I know that what I am doing is the right thing as Ray has lived way past his predicted life span ( from the neurologist) and is still at home with me. What we do, as caregivers, we do for love of the one we care for. (((Hugs))) from Sue. PS Difficult to find a snow bank around here, 100 degrees, high humidity and a hot westerly wind might be some of the reasons for that...lol.

Wow, this is a powerful blog and I have never experienced anything like you have so I have nothing to give you. Ray has had five strokes, 1990, 1999(x2) those two retired us, me to look after him, 2001, 2005. He does have diabetes, peripheral neuropathy, vascular dementia, the list is endless. BUT we do enjoy each day and do a fair amount of what we like to do. Ray's wants in life are small and his greatest day is when he gets to sit on his verandah, do his word puzzles while I bring him food. Nothing like having someone who looks after you eh? Blogs for me are part of how I relate to life and deal with what it throws at us. Venting, rejoicing or just sorting life out, blogging is good for you. So welcome to the blogworld and long may you be around to open up your life to us. Sue.

Vi, sometimes our sad news just seems to pile up and it seems as if the whole of our world is shadowed. But death is a part of life and sad though it is we do come out the other side, into the sunny side of life again. You sound very much like me with a wide circle of family, friends and neighbours who you love. And the more people you love, the more people you mourn. Just get through the next few days as best you can and I am sure life will return to normal again soon. (((hugs))) from Sue.

When you think things cannot get worse they usually do. I think it was a build up from the period before Christmas. I had so great an expectation and although I was prepared to put in a lot of work to make Christmas Day a well run, happy day I just went over the top somewhere along the line. Afterwards I fell into a slowed-down state where nothing much was happening and I didn't particularly care. Whatever it was I was trying to achieve, it hadn't brought any sort of feeling of success or happiness as I had expected and I experienced a big let-down. I felt as if I was having a melt-down. Hold on, this is not like me, good ol' Susie Superwoman, the girl who can jump high piles of laundry in a single bound while juggling six eggs and a skillet on the way to making breakfast. But everyone has those down days too and I have to accept that I do too. The constant care and attention that Ray needs really wears me out. The incontinence is a big part of that, piles of washing, day in, day out, a lot of bed changing, floor washing, becomes too much of a workload. It is like the Chinese water torture, only one drop of water at a time but it wears down stone and little by little it seems to be getting the better of me. Then life changed again, my friend Beryl's cancer got suddenly worse and I snatched what time I could to be with her in her last days. I guess that jolted me back into reality again. I have nothing to feel sorry for myself about really when I have my health as compared with a dear friend who is nearing the end of her life. What a very sad week it was as all who loved her watched her lose her final battle. It really is sobering to see death even once removed. I hope you all went on with chat as usual last Tuesday night. To add to my woes our telephone line was out of order for ten days. I think someone must have dug up the cable and quickly reburied it as it took the technicians days to find the break and longer to fix it. I did have a telephone line but it sounded like the caller was gargling under water with a mouthful of marbles. And because of the poor sound quality I could not pick up the internet. Tonight, for the first time, I am back on. But as it was patched, not replaced I don't know how long it will last. It was aweful to be out of communications with all of you. It really added to my feelings of isolation and self-pity. In the end I was making phone calls in which I could hear maybe one word in three. I made calls to those folk from our old church who would want to know of Beryl's death, funeral arrangements etc. In desperation I even used my mobile to make some of the calls. But today when there was a large crowd at her funeral all that seemed worth the hassles. Beryl was a lovely person. Poorly educated due to childhood illness - what we know now as a series of PFOs - which blighted her childhood and teen years she attended school only on and off. She didn't have the series of operation to fix them until she was 32 but she grew into a loving, kindly person and has been my good friend for many years. I will really miss her. I did the eulogy today and although I cried a lot last night as I wrote it it was good to recall many of our good times together. As a person who had had years of illness she could relate to Ray, and as a person who had cared for her parents in their later years she could also relate to me as a carer. Her loving support was priceless to me. I am hoping now that things get better, that life gets back on an even keel and I start to enjoy life again. Maybe I have been walking through the valley of the shadow of death again...we all do that from time to time as those we care for age and die, or succumb to illness, or find their own unhappiness too much for them. But if we are to expect support from others then we need to be prepared to give support too, to others in their hour of need. So if the phone lines hang together, if my computer defies the odds and keeps on going, if the temps stay below 100 degrees and we slip happily through the hottest days of summer, we will surely come out onto the sunny side of life once more and leave that dark valley behind us. Wish us well with our struggles and hope this year is a better one than the last.

Sherry everyone does deserve love and respect. So glad to see you back on blogging. Four months is a long time to wait for results so your despair and trepidation is understandable. Glad you came through it all okay. Sue.

Susan, if the glass is half empty there is always room for improvement. I figure as long as there are still a few sips left in the glass you can always open another bottle..hiccup! Seriously the life of a caregiver is a roller coaster ride and when you are down there is a hill to climb to get back up, but the view from the top is worth it. You are a determined woman and that counts for a lot, you can do it. Learn to lean on other when your own strength gives out. Sue.

Thanks to you all, for the virtual hugs, the advice, the love and concern. I said 'till death us do part" and I am not giving up at this stage. As I said - I need more help to look after Ray at home and that is what I need to express loud and clear to anyone who will listen. No, it is not time to put Ray into care it is time to put my brain into gear and figure out a way around this. I need to alter the way I do some things, maybe see if I can get some of his meds changed again as that might be the source of some of the troubles. I will enquire bout the fiber, that sounds like a good diea. We had a clean day yesterday and that helps - no washing to do. I know Ray can't help this, his body is betraying him again. And Fred, you know how that feels though yours is physical. A few of my real life friends have been asking if it is time for me to find a facility for Ray and the answer is "NO!!". There will come a time but this is not it. One thing I have to do is limit the time I give to others as far as bearing their burdens goes. I love to help but have to think about the cost, the hysterical phone call was just the last straw as far as that was concerned. I know it is taking too much of my strength propping other people up now. So another day, another opportunity to get on with life. (((Hugs))) from Sue.

Wow, rainbow trout...yum. Ray's first district as a Fisheries Officer was a trout district. We didn't catch them ourselves but we had friends who used to swap us fish for eggs, a wonderful arrangement in the trout season. I like the way you cooked them, the aromas and flovours would be wonderful. Sue.

Hi everyone, I am feeling sad and lonely and blue and a lot of other things today. It is the big let down season after Christmas and New Year is over and before "real life" starts again. It is the time when you clean up the house, throw away the wrapping paper, find a spot for the presents you got and go back to doing mundane chores. I have been having some trouble in relating to the people here lately. Don't get me wrong, I love Strokenet and all the wonderful people I have met here. I just wonder if we are on the same wave length at the moment. I have found a new site run by the UK Alzheimers Association called Talking Point and have been reading there. I think now that Ray's dementia is more of a problem than his stroke deficits so I need to know how to deal with the dementia. With dementia you don't get better, you don't get stronger, you don't get recovery. Dementia needs to be managed, by the caregiver, as he/she is the one dealing with the strange behaviour and by any people helping the caregiver. There needs to be routine, rest, calm and regular meals, medication etc. Dementia patients past a certain stage need a lot of direction, a lot of attention and minimum fuss and I think that is where Ray is now. I had the break of two weeks but it wasn't a rest as I went right on doing all the things I usually do. My fault as I thought if I worked in the mornings and rested in the afternoons for a while that would be the same as going away for a while. Of course it wasn't, I was still getting meals, doing housework and with the Christmas season coming up doing extra cleaning jobs and shopping, shopping, shopping, shopping. I was very proud of all I achieved but of course it came at a price - brown out. Brown-out is a term used here to signify that time before a power black-out when the lights flick on and off, there is low energy and you can't exactly do anything. It gives you a chance to get the emergency power system going if you have one and get out the candles but nothing more. You can't actually do anything, there isn't enough voltage. And that is a problem if it goes on too long. No-one fixes a system that is still working just a little bit. I am feeling unsupported. In real life here I have a lot of people calling on me. As an ex-telephone counseller people who know me and are desperate for answers say: "ring Sue, it's better than nothing" and so they do. One friend recently was so hysterical on the phone that I hung up twice before I realised who it was, screaming and crying at the same time doesn't make for easy communications. Her mother is dying, of lung disease, this is complicated by the fact that she has dementia and the medical staff can't cope with that. The answer to my friend is to stay by her mothers side 24 hours a day. Oh yeah. And so she is exhausted physically and mentally. Honestly I can't help in that situation. Even sitting and listening to her on the phone is not much help. Ray has increasing incontinence now and we are having disrupted nights as I am changing the sheets half way through the nights often two or three nights in a row. I can't understand why this is suddenly happening as there doesn't seem to be any changes in medication, food intake, anything that I can see as causing this. Maybe he has a low grade infection of some kind but he seems fine until dinner time and then it starts. Is it the dementia? I don't know. I am just hoping it goes away again. I have only so much to give. I need support myself and that isn't available at the moment as my dementia support group that I look on as support for me is in recess. There is a bit of fighting going on in Ray's stroke support group so that is only hobbling along at the moment. I seem to have to call on all my inner resources to keep from going into a black hole. Maybe I need an anti-depressant for myself? I will go to the doctor in a week or two and discuss that. This is a bit of a vent but it is how I feel right now. That's how life is sometimes, not going well all the time. It doesn't mean I can't cope, just that I am coping at about 30% of how I usually do. Miss Pollyanna seems to have gone on summer holidays and left Miss Grumpy in her place. Thanks if you read this and are feeling some sympathy. I know you all have such kind hearts. But sometimes what I need is someone to put strong arms around me and give me a hug. In real time. And that isn't happening right now.

Steve, good to have an update on you and Sam again. Glad to hear you are both okay. I bet Sam is glad you are doing more local work and not spending a couple of days at home recovering from each trip. I smiled at the "silence" you experienced during your camping trip. Ray was Fisheries Inspector for fourteen years early '70's to mid-80's and we went camping a lot with the kids as we had all the gear. I remember the noise in the mornings as all the birds screeched their heads off as dawn came. By the time we were all awake the birds had all flown away to start the day. It is nice under the stars, I do miss that part of our old life. Keep us updated on news from your household. BTW congratulations to your son, the bigger the fight, the greater the glory. Sue.