swilkinson

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  1. swilkinson

    who's problem is it?

    By swilkinson,

    We just went away for five days' holiday, a coach tour to a town about three hours drive from here. It is part of the biggest horse breeding area outside of Kentucky. The day tours were centred on horses but included historical homesteads and places where breeding horses for racing first started in that area and we visited the most fabulous stud full of the loveliest horses imaginable. I am not a horse rider but have been involved in the racing industry a long time ago and the sight of those brilliant creatures was like a glass of champagne for the soul.
     
    Four out of five days were pretty good. As other caregivers of wheelchair bound partners will testify nowhere apart from home is easy, the further from home the harder it is to get around. The local government area we were in seemed to have gone to no trouble to comply with the disabled persons guidelines so none of the places we visited had ramps, wider doors, proper disabled toilets etc.
     
    The motel we stayed in, at my request,did install a flexible hosed shower head but that was their only concession. I still had to haul Ray's wheelchair up steps to the dining area, moving chairs and tables out of my way as I went. If you go on holidays here you have to do a lot of that. Most establishments aren't upset by this, just a bit surprised that you would be bothered to take a disabled person on holidays with you. It's not deliberate negligence, just apathy that stops them from complying with the guidelines.
     
    So I hauled Ray through foot long grass, up muddy driveways, up sets of steps, around the backs of buildings when I couldn't get him into the front door with everyone else. As usual I cut up his food so small it was hard to see what it actually started out as. I supervised his showers, medications etc, I did all the things I usually do at home apart from cooking meals and answering the phone, but I still enjoyed the first four days.
     
    But this morning I did not check to see that he put on his incontinence "underwear" with his other clothes, the first inkling that he did not was when he went into a toilet and didn't come out for 20 minutes. Then I could see he had made some attempt to clean himself up but he was a real mess. We were in the middle of a forest at the time, not a water supply in sight so I "wrapped" him up as well as I could and got back on the bus. I cleaned him up at our next stop after requesting his suitcase from the driver. I am hoping the obvious mess didn't distress the other passengers and spoil their holiday.
     
    Who's problem is it when something goes wrong? The caregiver's, for not supervising every waking moment of her survivor's life? The survivor's, for not accepting the fact that he/she needs incontinence aids, and special equipment etc to live a life as close to the "norm" as possible? The rest of the community for not raising standards so that a person with or without a disability can enjoy the beauties of nature without discomfort and embarrassment?
     
    I know who felt it was their problem - me.
  2. swilkinson
    We did it, we went to Terrigal Beach, the big wheel beach chair was there, the boys put Ray in it and we went in and out of the water which was shallow at low tide and had some fun. Ray was happy to just put his feet in the sand and allow the water to splash him. It was the first time he had been in the sea since his major strokes in 1999.
     
    Of course Tori and her Dad came too and she had heaps of fun running in and out of the waves, mainly with Dad, but at one stage she said:"Girls turn" and grabbed my hand and out we went. She didn't go home till 5.30pm as her Dad and Trev had to go out for a while this afternoon and by then she was getting really tired. Time on the beach will do that to you whatever your age.
     
    If you want to see the beach, Ray, Trevor and the big wheel beach chair I've just posted two photos in the gallery. The chair is Australian design but the wheels are made in America, see www.roleez.com for other products. The chair was donated to Terrigal Surf Club by my next door neighbour's ex who works for a group called "Life without Barriers" which provides a lot of help, mainly to Downs Syndrome people and amputees to enable them to continue in sports, no doubt in America there are similar organizations.
     
    I wouldn't even know these big wheel beach chairs existed but I saw Gary in one posted in Spacie1 (Sarah's) photos in the gallery and asked my next door neighbour if he knew of such a chair and he told me there was one at Terrigal Surf Club and if I came down today while he was on patrol he would see it was out for me. So pat yourself on the back Sarah (and Steve for having this great site here).
     
    There are so many ways we can help each other and this site has certainly done a lot for me including giving Ray and I a wonderful morning at the beach today. And of course providing me with friends to tell the whole story to. I hope that you will have similar stories to tell of how being here and learning from others has helped you.
  3. swilkinson
    Ray came onto chat this afternoon( Wednesday night New York time) Thursday noon onwards here. I did some of the typing though he used the shift key and some of the time it was what I was thinking that went into the replies and sometimes he had some imput. I don't know whether it is possible for others to work out which one of us is talking, eh Gary? But anyway we stayed on for about an hour and communicated to the few who came in and out. Of course if you were watching the Grammies instead of coming to chat what can I say? WHERE WERE YOU???? Just thanks to all those who were there.
     
    I think Ray finds line by line thinking, which is what he uses when he is reading his Readers Digests doesn't work on chat. So if anyone has any clues that will help him decide what to say when he has three lines to read and the subject changes just help me out here.
     
    I have decided that Thursday will be the van's day off, that means that I will not take it anywhere, basically we will stay home and do what needs to be done here. Since our doctor ordered that we go somewhere every day as a antidote to Ray becoming depressed we have been somewhere most days even if it is just down to get vegetables at the fruit and vegetable stall about half mile down the road. So it is good for the van to have its own day off.
     
    Our son is away for two days a week now as he is minder for Tori Wednesday afternoons and also sees her home from school on Thursdays. This gives us a couple of nights a week when he is not here ( he sometimes stays with friends on Saturday nights) and I could easily get used to walking from the bathroom to the bedroom naked. It is not something I think about all the time but it is something that feels as if I don't have to worry what someone else thinks of me or wants me to do all the time, a kind of personal freedom thing for mothers who have retired from mothering.
     
    While I was out yesterday I had a phone call from the 'social worker' who is ONE DAY going to get me some respite care. Again I have tried all day to contact her, but as usual she either isn't in or has decided to put me into the too hard basket again. Delay, delay, delay is the name of the game we play.
     
    After we had been on chat for just over an hour Ray said he had had enough. He finds in it hard as I said to scan the feed line by line and work out what each person is saying and if that applies to him. I know it will be easier as he gets more practice. As we got up to set the table etc for lunch he actually called me "love", something he hasn't done for long time. So maybe the closeness of sitting side-by-side had somehow inspired a glimpse of that affection he once articulate for me. Who knows?
     
    As the song says: "Little things mean a lot."
  4. swilkinson
    I had some suggestions about Ray's eating and I thought I'd do something about them. I always used to keep little frozen meals but had run out of them. Today was a cooler day, an ideal day to make casseroles so I planned a couple taking a couple of hours to cook. No1 went well, not a problem, minced pork and vegetables, three portions,neatly packed away.
     
    No 2 was on, beef and onions cut up small, but it somehow didn't smell right. Couldn't work it out so kept it cooking. Now I always add vegetable stock that I make myself so I had added one box to each casserole instead of using bought stock. Didn't realise my mistake until I took the beef casserole out. I had put in lemon juice instead of vegetable stock!! I did manage to rescue it by draining, adding new stock and recooking it for a while, but it is not my favourite new recipe. Just to be on the safe side I also cooked up some chicken and portioned that out for Ray, I'll use the beef as a winter filler.
     
    I did cook him a hot breakfast this morning too, maybe as it is a fairly hot summer he is losing his appetite by the end of the day. It is worth changing things around a bit to get him to eat a little more, and keep his weight steady. One of the workers from Mum's Hostel told me that tomato skin is something else that people with swallowing difficulties can choke on so I have to peel stoned fruit, peaches and nectarines we eat a lot of, be careful with grapes, avoid nuts, and now peel tomatoes. Meal times seem to get more and more complicated as days go by.
     
    I keep worrying about the small things in life. I used to be a big picture person and now I only see the minutae. It is like seeing life through a microscope. Little things that I never worried about before loom large, a cough becomes a fever , a fever becomes lung disease. A thud becomes a fall, a fall becomes a broken hip. Everythng that happens tends to become exaggerated in my mind especially late at night.
     
    Somehow I have to rise all above this and get my sense of humour back. Maybe it got lost in the same place some people lost their Christmas spirit.
  5. swilkinson

    I have the symptoms

    By swilkinson,

    Common emotional side-effects for caregivers:
     
    * Anger
    * Guilt
    * Doubt
    * Impatience
    * Helplessness
    * Resentment
    * Depression and anxiety
     
    Hey, I just pasted this here from a classic post Jean has just brought back for us.
     
    I had a mixed day again today, some things went well, other things just got on top of me.
     
    The "last straw" was something Ray did that Mum did as part of her Alzheimers. He put a few things on the dining table, a couple of plates, knives, cups and then he sat there as if there was a meal prepared. I could see him sitting there, looking around. I was out the back working on something else and yes, it was close to a meal time. I thought he must be hungry so I asked him what he wanted to eat and he looked at me and said a phrase Mum also used to say:"Oh nothing much for me thanks, you know just something small."
     
    And where am I going to find this "something small" at this time of night? So he got a sandwich. He looked a bit unhappy but didn't say anything much, just took a long time to eat it, looking at me as he did it. I had some left over salad and I felt awful about this "nothing much" meal.
     
    I used to have a husband with a robust appetite and a healthy body, he would enjoy steak or two as most Aussie blokes do. He could do a bit of cooking himself and Sunday nights were often his cooking nights. I used to potter on Sunday afternoons and then he would BBQ in summer or make meatballs or one of his other "Ray-can-do" recipes. He would enjoy it more I think because he cooked it himself.
     
    I am building up a lot of resentment again, I am also getting nostalgic about what used to be. I think that was where I was when Ray wanted his small nothing-much meal. I know it is not his fault that he is loosing his appetite, having chewing difficulties and was sick twice yesterday. It is not his fault that I can't just whip up a salad or a stir-fry and expect him to sit down and eat it.
     
    I have had all the feelings listed above today. I think I REALLY do need to get out more.
  6. swilkinson
    I asked Ray if he would like to come in and go into the chat room with me. I have been working in the garden, it is hot, steamy and generally unpleasant but I got quite a lot done. It is a struggle to go out in the heat and I am glad I have a good temperature control as I know a lot of people don't.
     
    Now I am ready to sit down for a while and do something else. Ray is sitting on the verandah reading, he reads Readers Digest magazines and their condensed books which are given to us by friends. What he understands of what he reads I don't know as he never discusses it with me. I don't even know if what he is reading even makes sense to him as he never comments on it. I hope it does, but at least it is a quiet and peaceful occupation of his time.
     
    I asked Ray if he wanted to come into chat with me and he said: "I'm not interested in it to tell you the truth." I want him to be interested, I was hoping from our first couple of experiences with chatting that he would be able to visualize you all sitting out there as we do. We sit side by side in our back room with the screen in front of us and the bedroom to our right, the view to the backyard on our left. I know each of you that read this are doing so in some place you feel comfortable in and just as this is my way of taking a break it is also yours. I know some people read a blog or two before they go to bed.
     
     
    I was chatting to Sarah (spacie1) last night and we did a bit of "I wish that" that caregivers do. I wish that I could dance with Ray, I wish we could go caravanning around Australia as we had planned, I wish we could swim together, share an embrace ( as opposed to ME hugging HIM) etc. You get the picture. Of course we do things together 24 hours a day, but it is not in that full participating way.
     
    In my head I can see us dancing, twirling, bouncing on our feet, faces laughing, sweating, puffing at the end of a long number. We danced from the moment we met, I met Ray at a dance when I was still in my teens.We danced for a couple of years often meeting at the dance as we lived quite a way apart, I would get a lift there, Ray would drive me home. We danced at our engagement and at out wedding we hired the local two-piece band and danced for a couple of hours before we went on our honeymoon. We taught our kids to dance at local halls at events used to raise money for the school, or the fire brigade or whatever local charity was organised enough to fund-raise in that way. I guess small town Australia and small town USA have that in common from movies I have seen.
     
    Our dancing days finished with Ray's first stroke, he could no longer spin around. The only dancing we did was a kind of two step which we could do holding onto each other and swaying back and forth. It wasn't really dancing and I didn't like it but we did it at weddings when we were expected to get up on the floor. At every other event we pleaded tiredness or something else as an excuse and sat and watched the other swaying and twirling and smiling and circling the floor with their arms around each other and my stomach felt like I had swallowed a cold marble egg and we went home early with the sounds of music echoing in our ears. And some of you will know why I was 42 and crying myself to sleep.
     
    Since then I have tried to find new ways of Ray and I doing things together, some like the bowling lasted a while, some failed after two or three attempts. There doesn't seem to be much that Ray enjoys now that we can actually still do. So I do what I can with looking after him and he sits on the verandah and reads or inside watching tv or he sleeps. There is not a lot I can think of now that we could try.
     
    What Ray said to me is quite a statement of his state of mind if you look at it; just not interested to tell you the truth.
  7. swilkinson
    I don't know if you have old churches in your area that have churches with something that looks like a brick triangle attached to the side. That is a buttress, designed to keep the walls straight and not allow the burden of the roof to force the walls apart. It is sometimes used as an addition to an older building for the same purpose. Flying buttresses reach further up and are often designed to keep the stresses from forcing the ceiling to collapse and the walls to fall outwards.
     
    One of my functions in life at the moment seems to act as a buttress, in the family and in the church I belong to. There are small changes happening and when that happens life as a whole changes too. We often do not know to what extent until the cracks appear and then the buttress is used for support.
     
    We are starting a new year in Australia. Now any of you think that happened on the 1st of January? That is just when people THINK the New Year starts. For us people here on the coastal strip the whole of January seems to function as a holiday month. Life is wound down, laid back and taken apart while families deal with children on holidays, grandparents form support teams and how businesses and industry still functions I don't know. Life is slowed under the bright blue sky and burning sun. Then school goes back, February comes and the annual general meeting season starts.
     
    And it seemed today as if everyone says:"We should do something, I know, let's phone Sue and see what she thinks." And so my phone was busy discussing various projects with various people. BUT there really is nothing much to do or say because our church is scheduled to close on March 19. So reforming the Craft group, arranging to clean out the cupboards, planning for the next luncheon all seems to be part of what an active church does, not part of what a closing church does. It saddened me to remind friends that we were participants in an event that really would change life as we have experienced it.
     
    When the church closes we will lose a lot of close relationships, some of our congregation will move to a new church, some will go to another denomination, some will simply stay home on Sundays. Some will continue to ring their friends and I do hope that such friendships do survive the changes. But the network set up to supply emotional, spiritual and in some cases pastoral needs will collapse. In some cases these will be replaced by other services, other friendships even. But some of today's callers know that that doesn't apply to them. Like stroke survivors the aged and frail do not always make new friends.
     
    And so my life as a flying buttress is coming to an end. I rang my daughter about this tonight and her husband said I was being unduly pessimistic. I don't think I am. Ray and I are not as attractive package as we were 22 years ago when we joined our present church. Ray was a muscular and active tradesman. He was Mr Fix-it for all that went wrong. Washers on taps, screws falling out of pews, the front doors jammed again? Call on Ray, that fellow can fix anything! And the missus? Good with kids, helping in the Sunday School, studying the Bible with the other women, helping set up the luncheons. And the kids too, just what we want, more young families in the church!
     
    And then as others aged I took over their jobs too, flower arranging, secretary or president of the groups, organizer of luncheons, picnics and excursions, visitor to hospital and home. Then Ray had the strokes and that was curtailed a little, but there I was still one of the flying buttresses.
     
    I wonder if there is a place where flying buttresses go when their useful life is over? Do we finish up as part of the demolition on site, thrown away or do we become part of a wall, or pavers on a pathway to the new Garden Of Remembrance? I hope there is a plan for us all as I have reassured people today. A plan for all our lives after March 19.
  8. swilkinson
    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
  9. swilkinson

    think about Spring

    By swilkinson,

    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.
  10. swilkinson
    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?"
  11. swilkinson

    okay, so I will help

    By swilkinson,

    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.
  12. swilkinson

    no more trying

    By swilkinson,

    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.
  13. swilkinson

    Who am I?

    By swilkinson,

    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?
  14. swilkinson
    I had a visit from Ray's Stroke assesment Team social worker today. Ray is to go into an assessment program, seven weekly meeetings on Tuesday afternoons. We miss the first session, on St Valentine's Day as we will be away on a five day break.The first session is an assessment day (another one!)the rest will involve professionals, OT, ST, physios etc that will evaluate the group and each member of the group.
     
    I have agreed to drive Ray to these meetings as I think that out of the comfort of his own setting Ray "may" tell some of the truth about himself. Maybe in the presence of other stroke survivors he will let down the "everything is fine" face and be honest about himself, how he feels and how he feels he is doing. This is my hope anyway. Because I think the "everything is fine" thing is keeping him from actually doing the work he needs to do to get fit again. I'd like to see him realise that with some help he could do much better.
     
    After she spent a lot of time with Ray and I actually got to clean down the bathroom walls as I knew no-one was going to want to use it for an hour, it was my turn under the spotlight.
     
    This is the same social worker who has been trying since last October to get me three hours respite on a Wednesday morning. This was to start before Christmas, then maybe in the New Year nd then maybe February. But no sign of that so far. So her track record of going from theory to practical help is not good.
     
    Instead of askng me how I would use the time she is gong to give me (ha ha) she then focussed on my relationship with our son who mostly lives here. She gave me a lecture on how to split the work, split the bills, get a better handle on my finances so "we" could manage Ray better. She was so concerned with telling me how I should treat my son as a young adult with responsibilities and some reality thinking so he would understand what he needed to do in the circumstances etc that when I burst into tears she interpretted that as a sign of my "stress".
     
    She told me I must keep trying to resolve this problem, she knew how hard it was for me but it was definitely the best all around if I just kept trying to solve the trouble with my need of care for Ray by making sure my son took his part etc. EXCUSE ME does something seem out of kilter here or is it just me?
     
    It is so easy to get sidetracked when talking with a social worker or government professional that all of a sudden it seems like YOU the client are the cause of all the trouble. If only I could motivate my son to help me more with his father, help myself by being firm about taking time away from Ray whether he likes it or not, help Ray to be doing more so he can take a load of my shoulders maybe then my little problems with not enough help for Ray will go away? RIGHT!!!
     
    And before you all tell me what I should have said to that social worker picture me in my kitchen, with tears running down my face, trying to think of just anything to make her shut up and go away.
     
    Think twice Sue, before you ask to put yourself through all that again.
     
    And I still don't know if I will ever get a few hours off to do some of the things I need to do.
  15. swilkinson

    kids and attitudes

    By swilkinson,

    Our daughter has been urging us to come for a visit, so I rang tonight to say that we could maybe come next Tuesday for three days but wouldn't be able to bring the wheelchair as there wouldn't be room in our friends car for luggage and the chair. She was less than enthusiastic. She pointed out how busy they are, the kids are on school holidays but have plans for the week and...
     
    I backed down as I usually do. I think they had seen us a bit over Christmas and that is probably enough for now. But I was a little disappointed. Her in-laws were down for a week before Christmas and we were last there last January. But her father-in-law is fit and can go off and do the shopping, her mother-in-law is not as fit but probably prepared the evening meals. I guess we are a lot more trouble to have for a visit.
     
    Our older son was sympathetic when I spoke to him about it but he knows we won't visit there for more than a few hours. He, his wife and daughter come to us instead, and we had Tori today. So he makes the sympathetic noises.
     
    Our son who lives with us said: "I don't know why you bother mum. You know it is too much trouble." and more of the same. I know what he says is true. We are too much trouble now. We can't be the parents and grandparents we would have been if Ray had not had the strokes. But then we probably would have been too busy with the round-the-world-trip and visits to the stockbroker.
     
    I love all my kids, I saw them all through higher education and we gave them as good a start in life as we could. It's not that I'm asking for much help. I just wanted a few days of rest in a place where the phone won't ring for me, I don't have to shop or do the major repairs if it rains. I would have looked after Ray and maybe had a bit of a reading holiday. You know how that is. I don't know why I'm bothered really.
     
    What I will probably do now is book that five day bus trip I have been thinking about. That will be much more expensive so I shall do it and think about the cost later.
     
    I think I'll find the sign a friend of mine had on the back of one of her cars: "Too busy to mind grandchildren, out spending our kids' inheritance."
  16. swilkinson
    We went to see the physio today taking the ultrasound results with us. It was as the physio thought. Ray's left shoulder shows muscle tears and now atrophying muscles. All he could advise was a couple of exercises that he can do laying down of a morning that will hopefully allow him to keep the muscle that he has got and stop further deterioration. He also said he had taken the leg exercises as far as they could go. The fact is that Ray is back where he started from every time we go back so although he says he has done the exercises at home and sometimes he has a couple of times in the fortnight, he really hasn't done then consistently enough to make any difference.
     
    I know a lot of people can relate to this, as a caregiver and as a stroke survivor, if the motivation centre is gone the survivor is not going to do the exercises, go on the right diet, try new things etc. It take an uncommon amount of determination to get well and although I motivate Ray as much as I can by offering to do the exercises with him unless he wants to we don't do them.
     
    The physios advice was to hire a rollator for a month, take it to the shopping centre or a similar flat area ad get Ray to walk with it until he gets tired and then pick him up in the wheelchair. This might build his legs up a bit more. He said nothing is going to get him back to where he was even when he had the last stroke in May. And if he continues to walk with one foot turned in he will continue to have the falls and maybe even damage the left hip again.
     
    I know it is just what we had expected in the way of news really but each time someone mentions physio or exercise or special vitamins to stimulate the brain my little mind accepts that as a glimmer of hope and off we go, anything is worth a try.
     
    Some people strive and get so much back, maybe not 100% but a lot and some even go back to work. I don't want a miracle for Ray (well maybe I do) I just don't want any more deterioration. If he is healthy and stable and can do some walking we can go on another one of our little holidays.
  17. swilkinson
    After six weeks of convalescence, seven weeks  since the operation I am finally out and about again. As the surgeon said might happen I do have some swelling in my left leg if I stay on it too long but at least I can drive somewhere, walk around for a while and then rest, which means I can do my own shopping, meet a friend for coffee or go to church again. I really do empathise now with people who do not have that ability to get around. It is not a good life for someone who has been active, I guess I could live that way if I had to. I have greater empathy for all those I meet in nursing homes with restricted mobility too.
     
    Do you have “Piecrust friends”? I now know I do. I adopted this expression for those friends who ring me and say “We must do lunch.” or “ I'll come and get you one of these days and we'll go for a drive” or “How would you like to go out one day soon?” and then never follow up on it. That has happened to me quite a bit during my convalescence. I use the term piecrust from an old saying of my Dad's: “Promises are like piecrusts, made to be broken.” Maybe they didn't think of what they said as a promise just some happy thought? But for me isolated at home they seemed like a ray of hope and then turned into broken promises.
     
    I have just sent out 18 thank you cards, to the people who did contact me by phone or email, those who sent me cards and letters, brought flowers or meals and supported me in my time of need. I had a lot of texts on my mobile (cell) even when I was in hospital and it made a lot of difference to the way I felt about life. I don't have Facebook on my phone but found a lot of wishes for my recovery on Facebook when I got home. I do so appreciate the thoughtfulness of those who express care and support when I really feel alone, one of the downsides of being a widow. And even now I still have those fair weather friends who assume all is well and never bother to get in touch except for a Christmas card.
     
    I don't get a lot of letters now, letter writing seems to have gone out of fashion but I usually write some letters this time of the year updating our family news rather than send off a Christmas card with sad news. And there is always some bad news, we all suffer the loss of old friends, people no longer the couple as we used to know through ill health and other sad events. September/October here is the peak time for deaths and for births, I always enjoy seeing my friends post pictures of their latest grandchild or in some cases great grandchildren. My good news is that my grandson Christopher has just been elected school Captain for his final year of high school. We do five years of high school here and then it is work or University the following year. And I have just had a visit from my Adelaide grandchildren for a day so that is good too.
     
    I have been signed off by the community nurses now. They have been wonderful coming three times a week to dress the wound. My graft is solid and although it will take many more months to look or feel anything like flesh it is considered “healed”. So I can walk about and drive and all would be well except I am so darned tired. I would say that the four weeks I sat down with my leg up contributed to that as I surely lost muscle in that time. Now I have to do a lot of upper body exercise as I am still in some pain and cannot really exercise my legs that much. I am hopeful of being allowed to swim when summer comes. I did have some help with housework during my convalescence which has been handy but I feel now it is time for me to get back to whatever the new normal turns out to be.
     
    The weather has been changeable, most of last month was very cold at night but some days recently have been hot and humid already. It was wonderful that some of those were in the school's Spring break. My Adelaide grandchildren have been able to swim in the local pool, walking distance from the apartment their mother lives in now. The state of my garden is precarious as we haven't had much rain this Spring. There has been no sudden rush of Spring flowers unfortunately and although the orange tree blossomed it did not set fruit. The more common garden plants like geraniums seem to be flourishing but the ferns hate the dry and even the bromiliads are showing signs of stress with many trumpets browning off. I love my garden so hate to see this happening. It is a disaster for local farmers of course,while just a minor nuisance for me.
     
    So now I need to slowly get back into life, for a while it may be a little restricted and probably less exciting than before. I am 70 so have lived a good long life, with many happy memories I just need to maybe slow down a bit. Everybody says they are pleased to see me back attending the organisations I belong to. But I do hope no-one is too disappointed if I do less in the church now.  I really need to pace myself more but have no intention of putting everything aside as I love to be out among my pleasant acquaintances and friends again.  I will just be less of a social butterfly. Of course our lives get busier from now on  as we do the run down towards Christmas and there is much to do.  I just need to remind myself that it isn't me who has to do it all.
  18. swilkinson

    Busy January

    By swilkinson,


    General
    January always used to be my wind down month after the rush of Christmas. The run up to Christmas was busier than ever last year. With our minister due to retire at the end of December (which he did) more work came down to the ministry team of which I am a member. Then there were the other end of year parties etc in the  organisations I belong to. And  I spent a few days selling cakes for Lions in the shopping centre, something I love to do as I often catch up with old friends there.
     
    At the end of December I had a visitor for five days and then Alice and Trev arrived for their two weeks holiday. They keep me very busy, what shall we do today Grandma, says Alice so out we go, to different shops, out to lunch, off to visit the other cousins who were visiting their Mum about forty minutes drive from here. Trev and Alice were able to go to one of the local beaches three days in a row, three days without the onshore winds which blow in the stingers known as "bluebottles " up onto the sand.
     
    Their visit was followed by a visit from my friend Peter from Armidale who enjoys a visit back to the coast. So I had a full schedule throughout January.  But there were highlights. I get out more when I have visitors, I become that socialising person, enjoying shared memories. I always find it good fun having the grandchildren around to lunch or just going out for the day even if it is just a picnic in a local beauty spot. I don't get out as much by myself. I need companions to enjoy it with. And I believe having other people to make precious memories with is a bonus in my life.
     
    My life for the thirteen years of looking after Ray and my mother were precious years but very hard work. One carer looking after two people is a big strain. It was easier when I got my mother into care and only had Ray to look after. Of course his continuing to have strokes throughout those years took its toll on him and on me. I was very grateful for the other caregivers and survivor's on this site who knew what it was like and supported me through it. Those who haven't been in my position just can't understand. Better for them if they never have to go through it.
     
    I think back to those years looking after Ray and I don't regret a minute of them but they were very restrictive. We could never do anything on the spur of the moment, everything had to be planned and catered for.  Everything had to be planned so take into account Ray's disabilities. Everything was work for me rather than pleasure. Which is why I am now an advocate for disabled people and their carers to get as much help as they possibly can. Our care system is good but very limited in the way care is provided. There needs to be a lot more help for our long term caregivers.
     
     
  19. swilkinson

    peaceful day

    By swilkinson,

    5.30pm on Christmas Day, Ray is asleep and I have the house to myself again. The family have all gone and it is so peaceful. We started lunch late, as it was almost 1pm by time everyone arrived. Steve did one pick-up this morning from a nursing home. That meant the whole family arrived late as of course they waited for him to arrive home and change.
     
    The mums insisted that the presents get opened first. It all went well, presents appropriate to size and age, no eye rolling or rude remarks. I get a subscription to a magazine I asked for and Trev gets
  20. swilkinson

    ho hum, post ho ho ho

    By swilkinson,

    I agree with Bob, I am also suffering from "post Christmas boredom". Now you need to remember it is summer here so there is plenty to do but all the organisations we belong to that form part of our routine are closed until the third week in January. It is easiest to shut down over the Christmas/ New Year period and give workers time off when families are around (kids on a six week summer vacation) so factories, charitable organisations who depend on volunteers and some small businesses take a three week break for Christmas and the period after.
     
    So the survivor has no where to go, the caregiver gets no breaks and a kind of depression sets in that is seasonal. I usually try to overcome this by going out every day, down to the shopping centre, to one of the picnic areas, to the lakeshore. But petrol(gas) is still sky high in price and the tourists who usually go further north seem to have decided on our part of the coast as the ideal holiday destination so the driving is impeded by tourists, the parking places filled with them, the shops crowded with them etc.
     
    The family are also busy now with the catch up jobs that Christmas interrupted so Trev went over and cleaned Steve's carpets today and helped Pam clean up. I guess like me she lived with her post-Christmas chaos for a while, but eventually it has to be faced, the gifts being packed away or displacing other, older toys. There is no house big enough to allow room for all the toys a child thinks he/she can play with at the same time. So sooner or later a compromise has to be reached and some of the old ones packed away.
     
    I bought a small coffee table today for Ray at a second hand shop. I had been looking for a reasonably priced set of small tables but didn't find any and his last one broke a leg ( they all seem to sooner or later) so I bought the little table on castors as a stop-gap. It is principally used to put his "supper" on of an evening, but also for other times when he needs a flat surface close by. Of course it does not, as you would know from experience, fit in the same space. Hmmmm. I know Murphy's Law applies here.
     
    Four days of rain have been predicted but although we had masses of cloud pass over today we had very little rain. Other places had bad storms but we just had a few rain showers. The ants were on the move today which is a pretty reliable sign of rain coming so I guess we might not venture far from home this weekend. Not that I had any plans to do so. But as I began this, even a small drive can slay the "boredom dragon". And Ray has an easy way out of it, he just sleeps the day away like Rip Van Winkle.
     
    Living close to the coast as we do for the kids growing up, summer was about the beach. Wet weekends produced nose prints on the window pane as kids squinted out looking for a break in the clouds. I used to take the boys to the beach on Sunday afternoons, often finding a shady spot and sitting there with a book while they hopped in and out of the water. They seemed to finish up blending into the scenery of surf and sand, ending the summer with brown skin and blonded hair. Now they have their own worlds to live in and the beach does not figure in that and my life is the poorer.
     
    Maybe I'll take up counted cross stitch, read some of my long neglected books or pen a few lines for Lin before it is too late. Anything other than looking around and saying like the kids used to:" I'm bored. There is absolutely NOTHING to do here."
  21. swilkinson
    You are never too old to learn something new every day. I read that here as people come up with an improvement in their condition, find a new med, try a new treatment. People who try and fail have at least tried. The small number of people posting may just be because other members are still on that trial and error journey and maybe not ready to contribute yet.
     
    We just had our grand daughter here for three days. Her parents went to the country, in the north east of our state, actually nearly as far away as I went two weeks ago, to scatter our daughter-in-law's father's ashes on one of his favourite spots. It was a three day weekend, one day up, one day there and a late return tonight to pick up their best girl. Tori and I spent the weekend making new discoveries. She has made leaps and bounds in maturity since she started school so she is much easier to entertain now, but oh! she is so busy. I was really tired by last night and there was still a day to go.
     
    Today she went to church with us and then to Sunday school. She came bouncing back into church with the other children, mainly girls, clutching the picture she had made. Some of you will have seen it, it was her two footprints, sprinkled with glue and then sand, surrounding it were images of some of the things she saw as being important in her life. It is good that at so young an age the pictures were recognisable. Maybe we should all do one of those pictures, or maybe a word list, of all the things in our lives that are so important to us.
     
    In church we did all the usual things you do in a service, the message was good but not memorable, but one line of a hymn stood out. It used the phrase "the fret of care". I thought that exactly described what I feel sometimes, as caring for Ray whittles away at me like a small saw blade I feel as if I am losing part of myself and will never get it back. But think of fret work, that lovely screening cut out of wood, developing the wood into a work of art, something finer than wood left plain. So the pressure of my carefilled life is developing me into something precious and worthwhile although at times I might feel as if my life is turning to sawdust what is left far more pleasing than I would have guessed.
     
    Yesterday we helped paint the covered tables and barbecue areas at a park near the beach developed by our Lions Club over 25 years ago. It is part of a much larger parkland area some of which has reverted back to coastal scrub. Our local councils have some trouble with developing a coastal plan and sticking to it. I think too much money is spent on what would seem like refinements and don't turn out to be practical. The park we tackled has recently been refurbished so we were there to repaint the shelter sheds and covered barbecue areas and generally smarten the place up. Painting is not one of my major skills so I was only allowed to do the uprights and rails but I had fun. And the picnicing public will reap the benefit.
     
    One of the topics of conversation was one that often crops up. Why, if we have over 40 members do we call a working bee and only six people turn out to help? I've heard this so many times. But looking at our Club I can see a lot of people who would have been in that same park years ago doing exactly what we were doing. They have just aged beyond doing the work now. There are some more recent members who have not found out what they want to do in the Club and so are not really fully involved yet. They might catch on and become fully involved or find nothing that interests them and move on, you never know with people, do you? And so painting in a park did not seem appealing enough to constitute service work for them yet. And some will be involved in a lot of other Club projects but not that particular project.
     
    I sometimes spend time pondering all the new information I learn in a week. It takes time sometimes for me to see beyond mere words to the thoughts behind them. Tonight I watched a program on the "String Theory" which documented this abstract view of the universe. It told of the numerous scientists that laboured over many yeas to make a theory that fitted the need to join together a lot of scientific information to make some sense of our universe. I think each of us is working on our own particular "String Theory" to make sense of this life we live. We collect a lot of information, throw away the pieces that don't fit and in the end settle for some kind of acceptance of the reality of our lives. This is not always achieved in a smooth , straightforward way, we often struggle with those pieces that don't fit. Like with a complicated jigsaw puzzle there is a lot of ranting and raving as things that should fit, don't fit but in the end we do see some pattern in our lives. Hopefully it is a beautiful pattern and something worth keeping.
     
    Whether it is in the struggle of survival or in the fret of caregiving I hope what you learned new this day was something worthwhile for your future happiness.
  22. swilkinson
    "When it's night time in Italy, it's Wednesday over here" was part of a music hall song that my Dad used to sing when I was young ( he sang a lot of them as part of his spending if he had any spare money in his youth was a trip to one of the Music Halls). It had me puzzled when I was young as I thought there was only one time. Whatever it said on the clock in the kitchen was the only time I knew.
     
    Then as I grew up I learned that the time in England, where my Mum and Dad had family, and the time in Canada, where Dad's oldest sister and youngest brother lived, were also different. I guess that is because the world is round, eh? Now I know about local time zones ( we have four of them across Australia) Daylight saving time and other time zones are spread around our world.
     
    When I am in Caregiver chat on Tuesday nights at 8pm that is fine for people on New York time or to the east of it, not so good for people on Mountain time as it clashes with dinner hour or others on the west coast. When I get up in the morning and log on while Ray wakes up and gets dressed it is late afternoon in some parts of the world so I might chat to a cousin in Canada on Messenger. And when I am on just before I go to bed I talk to Mary Goldberg who is up early getting her husband and son off to work in California.
     
    I am doing Caregiver Chat for a while and then if it suits Strokenet and me I will become a host. I find it okay at the moment as 8pm Tuesday night is 10am Wednesday morning my time. So today I stayed in chat until 11.30am my time and then took Ray to the optometrist. He fell and broke his glasses a fortnight ago and then broke the arm off his other spare pair so we are up for replacing them.
     
    But when USA goes off Daylight saving and we go on it the time will be mid-day for me. That will mean I can go out for a little while in the morning and then host chat or go out after I finish. Ray is a morning person now and I try and work my program around his so it is more or less a day at home if I do chat. I can do that. I will be happy to change times though if anyone else wants to change the time to something more suitable to their needs. There is a saying, "timing is everything".
     
    I thought I would blog this as I have just replied to a post by Mars who asked when people are in chat as she has sat in chat talking to herself (haven't we all?). Personally I am on about three times most days, early morning my time, the middle of the afternoon and late at night. I am not on every day as I do have a life in real time ( even if it seems I don't have much choice with it some days).
     
    So if you have any thoughts or suggestions about chat times why not PM Bonnie or reply here and we will see when most people feel is the best time of their day for a chat.
  23. swilkinson
    I bumped into the husband of an old friend of mine today. *J* and I belonged to a couple of the same groups but didn't become friends till we did a twenty week course together. For a while we were as close as sisters. Then we saw each other at least twice a week. After that we saw each other intermittently. Somewhere during this time her husband got transferred to the same work place. During a conversation he told me *J* had cancer and asked if I would like to join her caretaker network. This was a new idea to me so I said "yes". Roughly it meant I called in once a week and sat with her for about an hour while she did whatever. Sometimes I made us coffee and we just chatted, sometimes I brought my lunch.
     
    As *J*s cancer progressed her husband took leave from work to take care of her, firstly working three days a week and then using leave without pay (one of the advantages of being a public servant) up till the time of her death. I still went there when I could and he would pop out to the shops or do some gardening while I sat beside her bed. Eventually she died but only with a couple of weeks in hospital. I went to her funeral and went on holidays. Ray had the strokes and I never went back. I hadn't seen *M* since then.
     
    It is strange to see someone you have shared part of life's journey with in an unexpected setting, there we were standing side by side weighing fruit in the greengrocers down the road. He was a bit surprised to see me there and asked that question we all ask while we catch our breath: "So what are you doing with yourself now?"
     
    I gave him the short version, Ray had major strokes in 1999 etc. I think I was surprised that he didn't know about that or wondered why I hadn't been at work (?) but possibly by the time he got back from leave other things had happened. I wasn't surprised that he had remarried as *J* died 7 years ago but was surprised to know that his family hardly sees him now and he rarely visits them. At the time of *J*'s death they seemed like a close knit loving family. But obviously there are other untold stories there.
     
    So why am I writing bout this? Because today we had yet another "church closing meeting". We have to have these meetings because there are loose ends to tie up, people to return donated goods and memorials too (otherwise they will gather dust in storage or be piled in a corner somewhere) and the afternoon tea to plan etc. With each meeting our little group grows sadder and sadder as we contemplate the "splitting up" of our little church family. I am trying to picture the shape of life after that. How long before I lose touch with the network of friends I have built up over many years as we all go our separate ways?
     
    And at the same time the caregiver side of me looks ahead to a future without Ray, without the life we live now. I do take one day at a time but the future hovers there beckoning me forward. But like a mirage what I imagine is probably far different from the true image. I really hope that is the case.
  24. swilkinson
    Well it doesn't take much to have a day off as a carer, you just ignore all the things that don't need doing and do what you want to do for a change. I mean you still get up, cook breakfast, change the bed, empty the bin etc. You just do it at your own pace. Then you tackle the next dozen jobs or so and voila! a day off. (Okay so I am not really telling you anything you didn't already know, there is no such thing as a day off!!)
     
    I had a day "off" today. I sat up late last night and finally got a rough draft of the family tree branch I have been working on completed. I emailed it off to an older man in Canada who shares a mutual, great etc ect grandmother and felt that was a relief. It has taken a lot of my spare time for the last couple of weeks to do it. This morning I got an email pointing out the first two mistakes but I was expecting that.
     
    Then mid-morning I got a phone call from my sister (yes, she is back in touch again) saying she had a friend who had access to some family sites and did I want to ask her anything, yes I did. So she may be working on one of my missing pieces for me. It is expensive to do all your research yourself so sometimes you have to decide that near enough is good enough and take someone else's research and add it to your own. I'm at that stage now.
     
    Then we went off to our local Family History group. We haven't been for a while so it was a bit strange walking in but turned out okay as we had left ourselves plenty of time to settle in before the guest speaker. He was excellent and gave us a run down about the British Marines, their history up to the time of the founding of the first colony here in Australia (Sydney) and their part in that. He was in full dress uniform and even demonstrated a "brown betsy" to us, it was the first gun to use the bayonet. I believe it is involved in the history of the Battle of Bunker Hill too.
     
    We met up with one of our friends there and invited him home for an early tea. That is what we call an evening meal which is early and light, a heavier more formal meal is called dinner.
     
    So far , so good. But then Ray became ill and I just got him to the bathroom on time. I hoped P didn't hear the noise that all that involved and after I had cleaned up we resumed our meal as politely as we could, all just picking at what was left.
     
    Ray went down for a sleep, I cleaned up a bit,our guest went home. Ray just got up again, still unwell and I just cleaned up again. Hopefully that is the last time tonight.
     
    It was a day of mixed blessings.
  25. swilkinson

    life on a better day

    By swilkinson,

    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.