swilkinson

Susan Ray and I just had two days away at my sister's house and even that was a break as my BIL barbecued and they have a dish washer. Congratulations to Rolly for faring forth on his own and to you for making it happen. Sue.

Sandy, I guess your mothers situation is a little different from mine as your Dad has a full time aide. I am Ray's full time aide. Here we have what is called duty of care, so if I leave Ray even to go down the street or out for a walk one of the risks I take is that he will have a fall and injure himself. Then I am liable to criminal neglect charges. It is a slippery slope for us carers as it is damned if you do and damned if you don't. Which is why I am pushing to get three hours respite a week. Sue.

BBQ's have been a big feature of our lives lately. We had two today. The first was lunch, I suggested it as a BBQ lunch on Australia Day seemed the real deal. It was very nice, lamb chops with onion, barbecued pineapple and salads. For someone on a low fat diet I've eaten my share of fat lately. No big deal as long as the pain stays away. Tonight we went to a barbecue with friends from a social club we belong to. I enjoyed it at first but as the evening wore on it became obvious that Ray and I have little in common with these people now. They still have a lot in common with each other but with a couple of exceptions their talk sounded empty, vain and self-absorbed. Maybe that is what all groups sound like to outsiders. Maybe that is what we here sound like sometimes too. At least as self-absorbed. Now I want to preserve the friendships I have. I know that in the months and years to come as Ray gets more incapacitated our lives will narrow down. There may come a time when we can't go out much, when the threshold of the front door becomes a barrier. I saw this happen to an old friend of ours as his wife had stroke after stroke. He could only go out as someone else came in to sit with her. His respite became the medical procedures he had to have from time to time, when she was booked into a nursing home. But out of love and loyalty as soon as he was strong enough to he would take her back home again. People like Ray and I who had never until then been worried by illness ourselves became the lifeline to the outside world. Other well-wishers phoned but no longer visited. Towards the end her times in hospital became longer and longer. Some people who had been friends seemed more able to visit there than they had been able to come to their home. Why was that I wonder? Maybe sick people seem to be more in their right place in hospital? The reason I am thinking about this is that one of our friends slipped into the kitchen to tell me that her cousin had died, at the end he requested that life supports be removed as he wanted to die on his own terms with life. A brave soul indeed. She was sad but said she admired the struggle he had had after many heart attacks and other malfunctions of his body. Some of these malfunctions are a big part of her own medical history so she has some fears that this might be her fate some day too. I was as much as a loss to comfort her as others have been to empathise with me. It is as if there is a glass barrier between us and others that is hard to break through. That as individuals our expereinces are unique and as such private as well. So even we in this community of stroke survivors and caregivers can only see as though through a mirror, the expereinces of others. Our comfort is as much an attempt to warm ourselves as to warm others. While this was going on the wine flowed and womens voices became shrill and the mens' laughter sounded more and more hollow. On other nights I would have thought indulgently that it was great they were all having fun. Tonight I didn't feel like that. There is something very sobering about being involved with strokes, as a survivor and as a caregiver. Maybe being in a life threatened state with other conditions makes you feel the same. And even those lightly affected by strokes and left with little ongoing deficits have still had that brush with death. These days because I won't drink and drive and I always have to drive I am not much fun at parties. Even though Ray managed to eat the food without choking ( we took our own chicken)and people went up and spoke to him and we weren't excluded I still felt very far away from the other carefree women of my own peer group. I can't talk about our proposed overseas trip, our latest trip to see a "Play in town", our planned big birthday bash. I have very little to boast about. The minutae of the day to day life of a caregiver does not rate very highly on the scale of what others deem important, does it? i

I've always preferred a hand bag with a shoulder strap anyway, so mine works fine on the back of Ray's wheelchair, I've got shopping bags that fit the chair too so I can carry extra and not make as many trips out to the car. Ray gets to have $50 in his wallet, if I need it I use it and replace it. I call him my "banker", he enjoys the responsibility. He has a spare car key too which has got me out of a jam a couple of times. It was raining today and I made four trips to the car park, got damp each time. If you hear a sneeze, that will be me. Sue.

Hi Janice glad Joe is home. Now you will have someone to cook for. Ray lost a lot of weight after having his remaining teeth out but I give him extra butter etc to make him keep what he's got and hopefull gain some more. Does Joe have a special diet now? Sue.

I was talking to Suez in chat and my son came and put a wooden cobra over my shoulder. I hate snakes in real life and even that one gave me shivers. Even a 30 year old kid likes to tease his mother. We went on to talk about people coming and going in our lives. In Australia the kids who come back home are called "boomerangs" they come home for a variety of reasons, end of relationships, loss of job (our son) to go to University or ongoing training. The nest is always there it seems, waiting to welcome them home. We've had to make some adjustments of course and aren't always happy with each other but that is fairly normal I would say. He has a part-time job now and is usually away Monday and Tuesday and one other day. This gives us all a break away from each other. I was thinking about when we had all the kids home as teenagers. It was a lively, noisy household. All our kids loved to have their mates over. It was not unusual to find a note on the refrigerator: "Please wake up Warren at 7am, he is third from the wall in the red sleeping bag." So as gently as I could I would shake Warren and send him off to his shift at McDonalds. Being careful not to walk on the others as there could be four or five stretched across the living room floor on a Sunday morning. It is great to look back at those times. Now we have three 30+ adult children and three grandchildren and since Ray's strokes our life is very different. It is not a bad life though. There are still good days, like our three BBQ days in a row last weekend. There are bad days and sad days too but it is not good to dwell on them. It is important to find a balance in life. I know from reading the forums and the blogs that there are a lot of people in a worse situation than we are in. We live in a very pleasant area and have some good friends. We don't have all the support we need now but I am working on that. I think it is important to be working towards a solution rather than sitting down and expecting others to find one for us. Eventually the situation will change one way or another and we will go on to face other hurdles. That is the way life is. I know what reality is, I live it, breathe it and taste it some days. But to dwell on the dark and gloomy aspects of my life would be like living in a dark and gloomy room with all the curtains drawn and who wants to live life like that? I'd rather go outside and stand in the fresh air for a while and let the sun take my sadness away. Thank goodness I don't live in the city where the skyscrapers shut out the sun but in a pleasant valley in suburbia where I can see the treetops as well as the houses. And hear the birdsong above the traffic noises. If you wake up blue this morning go outside, even in your northern winter where you may have to rug up to do so. There is something about being outside that clears your head. For those who can't sit back relax and let a memory of some warm spring day into your mind. We all have memories, good and bad. Today choose to think of the good ones. In the end life is what you make it.

Congratulations Vicky may you have all the happiness you so richly deserve. Your next blog will be about the dreariness of married life...lol Your Strokenet friend, Sue.

I have been looking back through old discs to find some early letters on family subjects to add to my family tree. Now I am not a logical person in a lot of ways so my discs are not purpose file discs, they are old back-up discs so they contain a whole lot of photos, emails and letters. It has kept me amused for nights re-reading old letters. It seems to me that when we first contact someone we are really enthusiastic. We want to give them all our details, share happy incidents, boast about our family ( well some of them) and generally do an exchange of information. With the big issues out of the way, within a few months it is back to the day-to-day stuff: Ray and I went to the beach today, the kids came over, we BBQed etc. In some instances this satisfied and some of the correspondents from the 2003 discs are still corresponding today. In other cases after a few weeks or months the contact petered out and lapsed. If they were snail mail correspondents they would just have gone on the Christmas card list. Looking back over my six months on Strokenet I have already seen that as a pattern. People come here with a desperate need, they bombard the boards with their information and well-wishers hustle onto the topic and give what is possibly enough information on the topic for the person to feel that they have been heard. Now there are less posts, dwindling away until there are none. The person's need has been met, their life moves on. For others they become a part of the welcoming committee. I think I have done that. Because I am up when a lot of other regulars are asleep I tend to answer if I see a newbie even if I haven't any information to help them. I just post something after checking to see that they are online waiting for "someone" to answer. In the case of heavy problems I don't know how useful this is but at least they have got an answer from cyberspace. Someone is out there with a clue of what they are talking about. I know I was relieved myself when I got those first few answers. We all have a purpose in life. My life has been touched by a lot of people I wouldn't have had a chance to be acquainted with any other way. I have pleasant people to chat with who come from all over America and places I have never heard of before and am unlikely to ever visit. I am preparing myself now to lose them one by one. As their needs are met, as life moves on and they come to terms with their problems and situation, they will move on. One day I will move on too. But at least for a while we can reach out into cyberspace and touch the hand of a person who like me is sitting in isolation jotting down thoughts via my computer. Like my distant cousins all over the globe the people of Strokenet have become a different kind of family. When I had problems early in my marriage a wise person, not a professional counsellor but one used to helping people with their troubles told me not to look for all virtues in one person. Strokenet, with its many contributors allows us the choose the advice that suits us, that fits in with our way of life, or what it is possible to integrate into our present life patterns. No one person's advice is going to do that. We need to collect a piece here and piece there until we feel comfortable with the mix. Of course, as with seashells we will sometimes throw away the best pieces and regret that afterwards. So, will old acquaintance be forgot and never brought to mind? Or will you one day in the future come back to Strokenet and look back on the posts of your present friends here and say:" Dear old ---, I wonder how he/she is doing now?"

Ask your doctor if any of the mediction you are on will help you gain weight, I think some antidepressants do. Keep a food diary so those little things you consider snacks are counted. Ask your husband to cut back just a little on meal portions. If you can do some planned exercises even if you only do them with your good side that will help use energy and burn calories. Putting one arm up is half of two arms up, if you see what I mean so uses half of the energy. Ray's problem is losing wieight, runs out of energy eating as chewing is such a problem for him now. Welcome to the blog community where trivia and friendship abound. Sue.

While not all change is good some changes can make us look at "our world" in a new way. I've only just got the idea with the size, font, colour that if you switch it on, you also switch it off. My son showed me that! Good on you Fred for looking around and exploring the interesting new features. Of course you and I are old hands now and for the newbie just getting onto the site is an amazing achievement. Sue.

And today we did go to the beach, Toowoon Bay, with Trev and Tori. Tori bottomed out a couple of times but up came her head and she was fine. She managed to lose the bucket we had taken, flung it into the water: "Sorry, Granma, it was an accident." she said as usual.s Trev took a BBQ pack and I took salad and goodies and we had a BBQ lunch, it was a great few hours out. We took Ray down on the sand, lifting and dragging him and settled him down on a fold-up chair with sand between his toes. The return journey across the sand back to the car was interesting. Ray didn't want to put his shoes back on and toe drop means you dig channels as you go!! A fun day is one where you come home tired but happy. Sue.

This morning Ray had the visit from the Speech Therapist, she really is a sweetie and has put a lot of thought into the exercises she has designed to help Ray's swallowing. She says he has "silent aspiration" which means that liquids slip down his windpipe and he doesn't react to it at all. Yes, she did talk about thickened fluids but said we'd do some exercises first. She was here for almost an hour, was polite, funny, sad about what she had to tell us, eager to help. She is such a contrast to the social worker. She wrote down what she wanted done, stood up and explained it and then went through the exercises one at a time. Ray and I laying side-by-side on the bed raising our heads and going red in the face while a minute elapsed must have been worth seeing and we did it three times. Don't do it if you have neck or shoulder problems but if you don't ,try it, it really is a strain, I can see why it is a strengthening exercise. So okay I WILL try to get Ray to do the exercises, for a while at least. So this afternoon I became "Madame Lash" and put Ray through the swallowing, the knees, the hips, the lower leg, all the exercises he's been given over the last month or so. It took us about 90 minutes and at the end of it I don't know if he was tired but I was. Whether we can manage this every day, twice a day is another matter. I think it will be just one day at a time, as usual. Tori was here today, Day 2 of the three days we were minding her. They cooked some yummy savoury muffins and I had one despite the ingredients, it was melt-in-the mouth wonderful and I've taken a remedy for the pain already, not good for the "Low Fat diet" lady. Ah well, at least I know what they taste like. Kristen and all the girls, I did get the cheap television set, it EXACTLY fitted in my entertainment unit so provided it wears well should be okay. After all in five years time we might be watching holograms instead of screens. Who knows what technology will come our way by 2011? The plan tomorrow if it is fine is to take Tori swimming. She can swim, Ray can watch, I might paddle or walk on the beach or dare I say it? take a book and read, read, read. If it is a nice day we will take a picnic lunch and spend some time out of the house. Maybe Ray and I can lay side-by-side on the sand, raising our heads and sticking our tongues out. Should give the passers-by something to talk about.

Vicky Anniversaries can be celebrations or memorial days either is good where appropriate. Lovely meeting you in chat again. Sue. :friends:

Used to sing a song that went:"We're here because we're here because we're here because we're here." you sing it to the tune of Auld Lang Syne. I'm told if you sing it long enough life starts to make sense. Or maybe, my informant being a Scotsman, it was what he was drinking at the time. Sue.

I have had the last time ANYONE is going to tell me I have to try to get Ray to do his exercises. No I don't. They are his exercises. He is an adult male aged 63. He is not my child. I don't HAVE to do anything. All my married life I have tried to get Ray to do things. It started with a "to do" list. I did the inside work, he did the outside work. I was half-way through my first pregnancy, grass up to my knees one day when the first person to tell me to "Try to get Ray to do" something was his mother. She was a sainted woman and I'll fight anyone who says she wasn't. She only had my best interest at heart. She said:"Darling, just make a list of all you need done and Ray can cross off the jobs as he goes." My baleful look there must have stirred up something in her because she actually did have a word to Ray and the following weekend guess what? All those little jobs got fixed, the lawn mowed, the taps fixed, the clothesline wound up and down as it should. Was this the beginning of a new era? Nope. We went from argument to argument, my "to do"list remained just that. A list. Somehow over the years we have kept our marriage going, our common faith has a lot to do with that, the support of friends, the isolation of some of the little towns we've lived in made up for by the warmth of the community. We raised our kids, helped our community, lived the life of respectable and respected citizens. Ray's "to do" list became my training ground, I can do a lot of things now, because when I got sick of a job not being done I bribed or paid or cajoled someone else into doing it or I did it myself. I can't change a tap/faucet washer but both my sons can. I even helped to dig the foundations of our front extension. Ray didn't get to it and the bricklayer was threatening to go onto another job, so I did it. Luckily my Dad came along, saw what a terrible mess I was making of it and jumped in beside me, he even took the next day off work to finish the job. But it was done, as were the blocked pipes, the falling gutter and other "man" jobs about the place. Well, you will say, what has stirred "St Sue" up this time, if she's done it for 38 years surely a few more years won't hurt. And some days you'd be right. Some days I just give a big sigh and get right in there and do it. This morning the dear little Speech Pathologist rang, she has been studying Ray's swallow tests results and it is all a bit grim. He really needs to be on thickened fluids now. But that means giving up some of our social activities that revolve around a lunch or a supper out. I am reluctant to do that as it will break up the last of my networks of friend and supporters. It is true out of sight means out of mind. And I don't want to lose these groups of people because they don't see us any more. This problem is not suddenly going to get better. The Speech Pathologist wants to give Ray some throat exercises but they will have to be done twice day. I have to promise to "try" etc and she will come and teach him the exercises. Now this is another task. I am already trying with the leg exercises, the bed exercises etc and I am lucky if I get it done once or twice a week. Frankly Ray is ready to let the world slip away as long as he gets meals etc served up. He is a typical nursing home patient now, not because of his disabilities but because of his inabilities. He wants that peaceful life depicted on the movies where the old fellow sits in a chair, nodding and smiling and is waited on hand and foot. And that is not reality. At this point I would like to get in my car and drive 1000 miles away, ringing the family from some small coastal town and saying:"Your father, your problem." Of course that is not going to happen. ST Sue is also a martyr to the cause.

Sorry to hear you had a day in ER, not the best place to be but necessary sometimes. There are better time ahead Fred. Sue.

Hi Susan If you and Rolly want to have Christmas in Hawaii next year you can come on to us for New Year and we can probably do - 40, 46, 27, 24, 25,19, 5 nd 3 off your list. But you will NEVER be 33. Sue.

Sorry to hear you missed church today Fred due to pain. Not the way you want to be. I asked Ray about the feeling that your leg is like a log and he has it too more frequently now. Will your neuro authorise another MRIor MRA to see if there is more brain damage? Have you thought of accessing alternate pain treatment? I know some people try acupuncture/ relaxation/ aromatherapy. Just gving you something else to think about. Cheers mate, Sue.

I have a feeling the person my mother warned me about was an older man with wandering hands. And as an English migrant child in a newly developing diversified suburb mainly populated by other migrants and refugees I knew people from everywhere else in the atlas. As Jean says it is surprising the different expereinces life has given us, and yet how much we still all have in common. Sue.

I have climbed a mountain, I was unfit, fat and over 40. I climbed it with a bunch of kids and carried their gear as well as my own. It was some expereince. What it taught me is that such an expereince wasn't just for the fit and the trained, anyone could do it as long as they stuck at it.I guess that is what caregiving for Ray has taught me too. Sue.

It's pleasing you Mum is recovering well. You are right about the throw-away society. With euthanasia ahead of us it is not a good future prospect. I suspect we are the last generation of caregivers. It is great our survivors have done so well. Sue.

Hope this is something like what Susan Lowe did in her pattern. Mine has an ancestry focus. I am from the long line of Winchester and Wood women, from double chins and strong hands holding children. I am from pioneers who went to Utah in the 1880's and my birth family who came to Australia in 1955, I am from Britain not England, from 1066 and all that and from the mists of Ireland and the highlands of Scotland. I am from the peace and quiet of the urban seaside suburb. Not from the house with the seaview but the scruffier, lower, poorer end of town where the common folk live, where you walk if you want to or drive if you have to. I can smell and hear the sea on a stormy night but don't have the spray on my windows or corroding my rooftop. I can see a scene so pretty that it is commonplace, a sunset to the west, a sunrise to the east. I wave to neighbours as they pass on their walk to the sea. I am from the weedy end of the garden. I thrive as the geranium thrives, run riot as a trailing ivy. I can withstand the storms of life as the eucalypt does, putting out fresh shoots after fire destroys the other trees in the bush. I am British by birth, Australian by choice and have the strength of the bullbdog and the leap of faith of the kangaroo. I am from the strength of my father who survived a prisoner-of-war camp and the endurance of my mother who worked in a factory making war weapons all day and cried herself to sleep at night worrying about my father. I am from the dirt of the south of England, seed to wheat, acorn to oak, sleeping plant to great blossoming in Spring. I am enduring, strong, and rooted in the soil but when the wind blows I shiver like the aspen and shake like the willow. Send the lightning to destroy me but I will endure. I am from the dialect of the peasant, from the sound of hammer on anvil, from the whine of the machine and the swish of the broom and the thud of the pick. I behold death in my parlour and the undertrodden at my table. I am generous with the little I have but never fear hunger. What we have we share. From the tales of Celtic holy men and the shout of the free thinker, from the chant of the wode and the yell of the pikemen come the accents of my speech. I am Boadicea and Hilda. I am from the times of old, from the years of tradition, from singing an old song and singing it well. I'm from the green and pleasant land, from the fighting force, from the gamble with death and the rising to life. I am from the bottom of the barrel and what is left when the rotten apple is thrown away and the old snuggle down to drink cider in the winter. From the sunlit story of Marjorie and Patrick, from the darker side of Elizabeth and Harold, from the "eyes averted" stories of Durkin family secrets. Who is Louis anyway? I am from the inside out, wrinkles, grey hairs, wisdom and kindliness. I am from the cluttered cupboards of my mind, from the treasure and the trash, from the laughter and the tears. I sprung not from the ocean like Venus but out of the ground like the trolls, or out of the heather like a lepricaun. I descend from a long lost Swedish g g grandfather and the "litte dark woman" my mother remembers as a child. Who am I?

Considering it is hot today, we had our grand daughter here last night on a "sleepover" so I didn't sleep very heavily for fear of not hearing her if she woke up and all the other factors in my life I am surprised but I feel great!! It is definitelt a "better day". Ray and I participated in a chat (Friday nght for USA, noon Saturday for us)and we must be quite a sight as we sit side-by-side. His face is raised, looking at the screen, a concentrating look on his face. I bend sideways so I can type across his body. He operates the "shift" key, I tap with one or two fingers on the rest. No wonder we get a lot of typos!! But he fully participates, waiting for me to yell "SHIFT!" as I type. He sometimes nods when he reads something he agrees with or sits back, when the guys were talking the technical talk on printers he lost interest for a while. Asha asked him when he is starting his own Blog. He shook his head and frowned. He knows he is more limited in words now, but who knows? maybe in the future he will be moved to start one. It was great that a few people remembered that we are here as a pair when his name is up for chat so said "hi" to both of us. He liked that. We are a team, not in all ways but in a lot of what we do, if you get Ray you also get Sue. It was good to see Mary Goldberg on as I had a chat with her last night my time too. It is good sometime to just have two of you on so you can discuss something, with six or more on the topics can change really fast and you can get left behind wondering what the answer to the question you asked was. Or did it just get lost in cyberspace? Somewhere south of the Bermuda triangle? We met a new friend "bessy" today too. I took Ray to the Gallery to see photos of the people we talked to so please friends if you don't have a photo up put one up for Ray's sake. If you don't have the technology a friend might be able to upload a photo on their computer if you sit in and put your details for Strokenet in first for them. Sons are often handy with "know how", or neighbourhood computer geeks. I know chat isn't for everyone, I held out for almost six months before I went in myself. But if you are comfortable here and trust the people as you get to know them through posting and blogs then why not participate? for those of you like Ray who don't type much then a "sit in typist" like me or a friend might just help you achieve another milestone in your recovery. I have to do some gardening, some ironing, some thinking about meals. I need to organize the freezer so I can find things instead of tossing things around like a dog digging a hole, each time I look for something. It is a busy day as usual. But remember, here in OZ 90 kms north of Sydney, Saturday 14th 2006 is a good day.

I don't get to drive much on my own either, usually have Ray on board and he HATES loud music, so driving is mostly to and from doctors etc. I usually ring friends when I am bored, fills in some time and we might get an invite to lunch or a suggestion we meet up somewhere. Sorry you can't drive. Ray can't either and you certainly miss that independence. Sue.

I used to make something like this when I did cooking demonstrations at Tupperware parties. I must look out some of the recipes from those days. I remember one called "Impossible Pie" that I would love to use again. Keep on cooking, mate. Sue.