swilkinson

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  1. swilkinson
    "Sardonic
     
    French sardonique, from Greek sardonios (meaning "of bitter or scornful laughter"), by influence of Sardonios - the Greeks believed that eating a certain plant they called sardonion ("plant from Sardinia") caused facial convulsions resembling those of sardonic laughter, usually followed by death.
     
    Scornfully mocking or cynical.
    Disdainfully or ironically humorous. " thanks to the Wikidictionary.
     
    Some of the humour I use as a caregiver and as an Australian woman is sardonic. It is laughter with a twist, black humour, humour where you "had to be there". Sometimes this is misunderstood by others who are not used to this and can take offence at it's bitter-sweet component.
     
    Ray is back from Camp Breakaway, he had a good time, so he said. Mind you he couldn't actually enumerate what happened, who was there or what was said and done. That is okay. I have an arrangement now where our provider gives me a follow-up call with any new problems etc that may have occurred. Today's phone call was about incontinence as that is his new problem. I guessed it must have been as his black garbage bag in which the used clothes come home was full and his suitcase practically empty. So next time there is a request that he wears diapers. And that I send two spares for each day. This is okay with him, he says. The woman I was talking to will also send some literature on the latest ones.
     
    She said to me:"We can't leave him wet."I said to her:"Maybe it was raining." She laughed, understanding that I was trying to inject some humour into a painful discussion. It must be hard to make these calls. To tell someone that their dear one doesn't have some of those skills that we all take for granted, or that compared to last time there had been a deterioration, a loss of skills. Mind you the caregiver usually realises what is happening, only now it is out in the open, put into someones files.
     
    He also left his "Glucometer" behind. He takes his sugar readings every morning so I rang to find out if it had been located. Luckily it had and will be returned by one of the workers who will drop it here after a night in Sydney.She is a friend's daughter so I told her no rush, leave her options open, she might get lucky and not come home. She laughed. It is a small courtesy, to laugh to create a mutual feeling of relief. We are blessed by those people who come into our lifes rarely but always bring good humour and a willingness to share laughter.
     
    I loved Sarah's (Spacie1) blog about the pink panties. It is easy to pack wrong clothes or not pack the right ones. Ray's have to be labelled, and listed on a list to go to Camp Breakaway.I think they all came back because Ray left the ticked off list on his bed. Really handy. So if one day I go looking for a particular pair of trousers or a cardigan I'll know where it is.
     
    Anyway he is home, the holiday is over BUT I get to do it all again in two weeks time!!
     
     
  2. swilkinson
    Two out of three days gone already. Ray went off to Camp Breakaway on Tuesday morning and I waved him goodbye thinking about all I would get done while he was away. Well, fortunately I came to my senses. This is MY time, not time to catch up on housework, cooking, cleaning or sewing. This is my time to do the things I want to do, right?
     
    Big problem. If someone asks me: "What do you WANT to do Sue?" I don't really know what to say. After all for the last seven years I have mostly just done what needs to be done. On the three day breaks I have mostly just gone on with the regular routine. This was important in some ways as things get to be done on certain days here, so if I miss a day or two chaos reigns. BUT looking around I can't see that working flat out for three days on the house and garden is going to give me a lot of satisfaction.
     
    So I sat down and thought. What do I really miss after seven years of looking after Ray? And the answer that came to me was - girlfriends. :cheer: Now this seems silly for a woman heading for sixty, right? No, not really. Girlfriends are the support group most of us draw our wisdom, perception and often our sense of perspective from. Girlfriends are peers. Girlfriends have gone through puberty, marriage, birth of children (sometimes) divorce (sometimes) and menopause with us. They have fed and deflated our ego as the need arose. They have been there when the males in our life deserted or went away or collapsed under the strain of life.
     
    So I rang a few of my women friends. Only three were available to meet in the three days so I thought that was okay. They were a starting point. So yesterday I had lunch with one, a widow, a good friend with her husband of Ray and I when Ray had his major strokes. Her husband has since died but with people like him loved once is loved always. So gone but a long way from forgotten. We had a delightful lunch and an afternoon of chat. I left there reluctantly. She had to go see her step-father who she is now caring for in his own home so off she went to do that.
     
    I went on to my sister's place. She was delighted to see me, her husband was away at a seminar and would not be home till late so she insisted I stay. Just as well I threw a little overnight bag into the car eh? So we had our dinner on trays on our knees in front of her wood stove, magged, drank pots of tea, ate chocolate biscuits. We chat more now than we used to. If the topic gets a bit heated I just let my mind drift for a while. I have learned not to buy into an argument. Why bother?
     
    I stayed at my sister's until an early lunch today and then came on home. It was a beautiful early winter's day today, traffic flowing and my little car going well. Good to be home and find there wasn't anything untoward happening. Checked the emails, message boards etc, replied to a couple, spent some time looking at all your blogs. I felt lazy so thought I should at least do a little housework. It has got cold today and promises on the weather reports of snow in the Southern Alps so a good time to look out the winter wear so I did that. OH dear, maybe I will just buy a couple of new things tomorrow to supplement my wardrobe, well maybe just one little top, a scarf, a little bit of colour to give winter jackets a lift?
     
    Girlfriend NO 2 went out to dinner with me tonight, she is a younger widow and has a fascinating family history. She has four sons who are all grown up but they too have tangled lives and the conversation was anything but boring. She and I are both of the "wisdom born of pain" philosophy way of thinking. She has had health problems, marriage problems, family problems but has come through it all with a great sense of humour. How good it is to laugh!! Very good company, good food, great evening.
     
    Tomorrow I am meeting friend NO 3 for lunch. Should be good fun too. Very different personality from mine but opposites sometimes do attract. So looking forward to that as well.
     
    How much difference it makes to just be ME. Sue without Ray. I love him heaps but caring for him is stifling both of us. I overdo the care I know, but how to tell how much is too much? But what a wonderful relief it is sometimes to just be myself, thinking my own thoughts, just doing what I want to do. But there is only one day of that left now.
  3. swilkinson
    When I was working, before I was married, the corporation I worked for had a social committee and we used to go to Sydney to a meal and a show. We saw some wonderful productions of shows like "Funny Girl", "Hello Dolly" and "My Fair Lady".
     
    One of the plays I saw was called :"THe Russians are coming!!" The play was based on a rumour that in the 1880's the Russian fleet was on the move and was in the Indian Ocean headed our way. The entrance to Sydney Harbour was a significant place, the government of the day thought, to place cannons so if the Russian fleet sought to come in we would fire at them and sink them. It was a farce of course. Army men talking about the Russian invasion and planning strategies at parties while their wives talked about the latest gossip. In the end what did come into the Harbour, with permission, was a training ship full of lovely young Russian sailors and military men who stole the hearts of more than one Sydney maiden.
     
    We had a Russian invasion tonight. Some neighbours from down the road, of Russian ancestry, came to give our son a hand to move some accumulated stuff out of our cabin up the back which will allow some more storage space for the printing equipment Trev got from our other son's deceased father in laws estate. A couple of them were here all day giving Trev a hand so he asked could he have a barbecue as a "thank you". So that we did. They were here until about 10pm, about five noisy men, Ray joined them until he got tired and I stayed in the loungeroom and watched tv and left them to their man talk.
     
    It is nice to do some of the normal, everyday things you used to before the strokes and Ray does miss the company of other men and tonight he got a dose of that. These things seem to happen unexpectedly and without much planning and that is good. If I had planned a night when six men could get together and have a talk it wouldn't have worked nearly as well as tonight did.
     
    Ray also participated in chat today, the first time for about a month and he enjoyed that experience. We had to go early as we also had a commitment , he and I and another Lion, to do a BBQ/sausage sizzle down the road at our local liquor outlet too. So by the time he went to bed at 9.30pm he really was tired, very wobbly on his feet as he never got time to have his usual afternoon nap. So I assisted him with his shower and put him safely in bed.
     
    It is so good when you have an opportunity to add to your store of good memories. The Russians coming to our house was a very enjoyable event, this particular family of them are tops in my book. Funny that thirty years ago we would have shunned them as "the enemy" and now they are just fellow immigrants and neighbours. Makes no sense, does it?
     
    I guess as the biggest Island in the world we, in Australia, still feel vulnerable, to all of those who for some reason might come over the sea, invade part of our vast coastland and endeavour to change our way of life. We, the British, did it to the ununited nation of small Aboriginal tribes who were the previous settlers here, and there are still repercussions from that "Invasion". Too politic to say more about that here.
     
    But we had another good day today. And at this time in our life, when the good times ahead may not be in such great supply, that is a good thing.
  4. swilkinson
    Wow, I hardly know where to start but I thought as I have some good news I would share it.
     
    Ray goes to Camp Breakaway twice a year, usually about March and then in October. He goes from 9.30am Tuesdays till 10.30am Friday. He is picked up in a little community bus and dropped home again. This is to give me a break and give him a mini holiday. We pay $200 for this and there is money raised from other funds plus government subsidies that make it up to whatever it costs to run. This is okay twice a year, after all our pension is not a large one and $200 is about what we can afford. Ray is booked to go from 9th-12th May, his first camp this year.
     
    Today I got a phone call from a member of the staff who supply this service asking if Ray would like to go from 23rd - 26th May. I explained that he was already going from 9th-12th and there was a bit of a pause. Then an explanation that they wanted him to go as room-mate to another stroke survivor aged mid-fifties who didn't want to be put in with "some old bloke" so *S* thought that Ray might be the ideal person to partner him up with as a room sharer. So if it was okay with me he could go for FREE. I would be doing them a favour etc.
     
    :cheer: :cheer: :cheer: Picture me jumping up and down while keeping my voice level and saying, well okay, that sounds good, I'm sure he will be delighted to help out etc. And he is. He can go to Camp Breakaway twice in one month. Buy one, get one free. Wow, pinch me and see if I am asleep here.
     
    And for further good news, I am back in touch with the people who are going to (eventually) provide me with some respite. Mind you no promises have been made, no contracts exchanged etc but the worker is going to come and see us at last. And a friend in the business has suggested if it doesn't happen I should send a strongly worded letter to our local member of parliament and ask why they are not giving me the respite I qualify for. And if that is not replied to follow up with another asking:WHY! WHY! WHY!
     
    And good news item three is that Ray is doing the leg exercises that the PT gave him last week where he holds onto the verandah rail and steps to the right, back to the middle, steps to the left etc. And she came today and was quite pleased with him, so he is pleased with himself for making the effort, and I am pleased with him for making the effort etc.
     
    And it is a lovely autumn (fall) day and I have been out in the garden freshening up the potplants with more potting mix and cutting and pruning and I feel tired but pretty satisfied with what I have done. :cloud9:
     
    So there are some good news days.
  5. swilkinson
    It's a Sunday thing. Being reflective, waxing philosophical, whatever you like to call it. It has been an odd week. I have had interaction with people this week I haven't seen for a while. For that reason I have been explaining where Ray is up to and updating people on his progress or regress on certain fronts.
     
    There was a topic some time back that raised the issue of having to explain a stroke, from a survivors point of view and I often take things said here quite seriously, so I try not to talk about Ray in terms I know he wouldn't use, not make myself the centre of the universe and not to overload my listener with unnecessary information. That said I do try to be realistic about how he is and what is happening to us right now.
     
    Sometimes the answers to what I say are bizarre. Even seven years after Ray's strokes people still want him to get better, expect us as a couple to be doing all the usual close to retirement things and ask when I will be going back to work. They tell me the usual stories about a bloke they knew who had a stroke and went back to work, about new treatments for diabetes, the new pills that will mean no-one will have to give up work because of having a stroke. I know I am talking to people here who have listened to these same stories themselves.
     
    And I do try to keep an open mind. I try to listen and look interested. I try not to point out that I have heard this before, that circumstances alter cases, that there are different intensities of strokes and it depends on who is hit where, to what degree and how many other health issues are already in play. Ray has had five strokes, some more severe than others, has diabetes, high BP, etc. The damage his brain has sustained is not going to "heal". From the last stroke he has not recovered much more movement despite rehab and exercise. We do all we can to alleviate the conditions he has, but what else we could do? I don't know. I have hope for the future treatment but fear it is too late for Ray to benefit.
     
    I still wonder if I am being open to all the good news. A friend I visited this afternoon is into faith healing and she thinks I should at least take Ray over to the "Healing rooms" at her church and see if he can benefit from what they do there. We already have a lot of people praying for us week by week and boy do we need it. Sometimes more than others. We have friends to whom our welfare means a great deal and all of the good, kind folk who make up this site and pray for us or send us kind thoughts or whatever. I don't think a visit to a particular site where prayers are said is going to make much difference.
     
    And yet for some reason while I was thinking about all this this afternoon the "Canterbury Tales" came into my mind. Not the actual bawdy, earthy stories from the Chaucer works but the idea of making a journey to work off a penance and find a new look on life. Maybe there is still some journeying ahead for Ray and I? Maybe my faith has got bogged down in a rut and my natural cynicism is dominant over my trust and faith? I will put some thought into this as it seems an idea that could use a little more working through.
     
    I told you it was a Sunday kind of thing, didn't I?
  6. swilkinson
    Some days are very strange, they look quite ordinary from the outside but surreal on the inside, like standing in a room filled with psychodaelic colours, as we did once in an exhibition hall.I know this isn't what happened that I am reflecting on now, but what I felt happened today.
     
    We had an appointment this morning to see Ray's neurologist. This is the check-up six months after I was told to "make the most of the next six months". I never knew what to make of that statement and as Ray hasn't had another stroke or deteriorated a lot I do wonder what the neuro was warning us about?
     
    The neuro was running about 40 minutes late so we had plenty of time to look at magazines, talk to the other patients etc. Isn't it strange that it a doctor's waiting room perfect strangers seem like friends because they have a limp, or seem worried or odd in some way, and you sit talking to them at a depth you never even talk to friends at? As if the air contains some kind of truth drug?
     
    When the doctor came out with the patient before Ray they were both laughing so obviously good news. When we went in he spread out a lot of paperwork and studied it for a while, I expect it was the reports of the Stroke Support team, I guess I should have asked. He then asked Ray if he felt his memory was inmpaired in any way. To my surprise Ray did say he thought it was failing. So the DR asked would he like to try a tablet to see if it could be improved and Ray said yes. This is the surreal part because usually Ray looks at me before making decisions and this time he didn't. The Dr went off and came back with six weeks worth of samples and Ray is now on Reminyl. Just like that.
     
    As we left Ray even had a joke with the doctor, very unlike his usual goodbye. Maybe he felt relief that he has finally said something that he had been thinking about for some time. Maybe he has faced some of the truth about what is happening to him and that lightened the load.
     
    We went to see cousins he is fond of (the husband was best man at our wedding). We stayed to morning tea and then to lunch and then most of the afternoon. Ray talked a lot more than he usually does and in a much more light hearted tone than he has of late. Maybe he was expecting some really bad news at the neurologist's and when it didn't come he felt much more light hearted. I never know with Ray as he isn't one to express emotions. I have to work out what he is feeling by the way he is acting instead. Whatever the reason for him suddenly seeming happy again we did have a lovely afternoon with his cousins.
     
    I read up on Reminyl and it is said to be made originally of plants including daffodils. Which is funny because at his cousins' place we had been talking about a mutual friend who sometimes has been known to cook up one thing thinking it was another including mistaking the garden bulbs his wife had bought for onions.
     
    Maybe a daffodil a day will keep dementia at bay.
  7. swilkinson

    another year gone

    By swilkinson,

    Ray had his stroke anniversary on April 19th. This is not the anniversary of his first major stroke. He had one on December 9th 1990, had six months of intensive rehab and went back to work. That was a real stroke, but he got over it. It left him with anaesthesia down the left hand side of the body, slurred speech and an inability to think when he was tired and overwhelming fatigue that meant he dropped into a chair and slept as soon as he got home of a night and slept most of the weekend. But he still held down a job, drove and did all the usual things.
     
    The stroke on 19th April 1999 was the one that changed our lives. Followed by one on 10th May 1999 that compounded the damage and nearly took his life.
     
    So that is why, I if not both of us, classify 19th April as his stroke anniversary.
     
    I took things easy last week, seven years of caregiving is a long time. In that time I have taken over most of the jobs Ray ever did around the house and all the other tasks that keep a household running and keep life flowing. Ray is now my companion, the person in the passenger seat. This has been as hard on him as it has on me. On Thursday (20th) he had a dementia test and failed some of the questions for the first time. When the therapist asked if he had any regrets he said:"That Sue has to do everything now." It was a statement that he has never made before as he has always been in denial big time. Maybe at last reality is breaking in.
     
    The 24th is our grand daughter's birthday. In previous years she had had to celebrate on another day as 24th April 2001, on the day she was born, her other grandmother, her mother's mother, left. She died of breast cancer at the age of 63. It was a bitter-sweet day for her daughter, the death of her mother, the birth of her daughter. But this year we had the party on 24th, her daughter's proper birthday. After five years Tori's Mum was able to bury her own grief and think of her daughter instead. Bravo for her.
     
    Tomorrow(well actually today as it is now 2am my time) is Anzac Day (25th) the day the soldiers of all the wars who have sacrificed their lives for the well-being of Australia and it's people are remembered. Of course there are no survivors of Gallipoli now, and only a few from the second word war will march. But there have been other conflicts Australians have been involved in, Korea, Malaysia,Vietnam, Iraq and veterans from those wars will march. It is another kind of anniversary. My Dad, although a British not an Australian soldier marched in Sydney, proudly, with his medals on his chest for many years. Then he would just attend a local service, then just watch the march on television. He died in 2000. But I guess I will celebrate the anniversary while I live as it was so precious to my Dad.
     
    This is probably the first time that the anniversaries don't have the impact of previous years. The major strokes happened seven years ago, Ray's had two strokes since, he has survived them. Life goes on.
     
    Tori's Mum is seven months pregnant with her next child, she had a good progress report today, that is a reason to rejoice. For her life goes on too.
     
    I visited an old friend today who also lost her husband to stroke. He had heart attacks, bypasses, years of invalidity, then a series of strokes the last of which he died from. She is philosophical about it all. She says her life has been a series of steps up, to a good career, a nice home, a family, holidays abroad etc. Then a series of steps down. Now she doesn't quite know where she is but the place is called "ACCEPTANCE" and I put that in capitals as that is the way she said it.
     
    I guess all of us reach this place called "ACCEPTANCE" in our own way and in our own time. I reach it sometimes only to see it disappear over the horizon again. But maybe it is not disappearing, I am just swinging away from it as you do when you leave one minor road to make a loop and go onto the highway again. So there is a progress, it is just in levels.
     
    I am waxing philosphical again. Sorry. It is the early hours of the morning. I ate all the wrong foods at Tori's party and have massive tummy ache and am sitting here waiting for the heap of medication I took to take effect. This is not the best time to blog, but I thought that maybe if I got a lot of this out of my mind more peaceful thoughts would follow.
     
    Bless you all on whatever part of the "ACCEPTANCE" trail you find yourself on right now.
  8. swilkinson

    my life today

    By swilkinson,

    All you who read this blog know that I have trouble with change. Not the little changes that meet us every day like biscuit mix moving from aisle 2 to aisle 4 but the changes that make the scenery of our lives look like slowly falling dominoes. One , two , three four changes and I quiver, five, six, seven and I fall. Well I think I am about at number four again.
     
    Today we had the reunion lunch of our little church group, exactly a month after the closure. We all gathered for a bring your own lunch at a tiny hired hall close by. It was wonderful to see the old familiar faces once more. All went well until someone suggested we all give a "report" on what had happened since the closure. One of our younger men stood up and gave us a spirited speech on how much he liked the move he had made to the other church in our old parish, how good it was, how welcome he felt. I would have believed him if he hadn't been addressing half a cream cake in the middle of the table and screwing a paper napkin round and round in his hands. Something tells me he is not telling the truth here.
     
    Others said they have been to one church or another around the area, some have decided that they will go to this or that service, all admitted to missing the fellowship we used to share. No-one wanted to admit they saw the gap widening as time goes by but it was fairly obvious that to some it feels like the aftermath of a divorce and they are still shaken by the experience. One older lady burst into tears and a couple of others left the room. Of course about a third didn't come at all and one or two said to me on the phone that they couldn't face having to leave old friends behind again, they thought it just added to the emotional feelings they already have. The hugs at the end were a little too hard, as when you know you won't see someone again and you part at the end of any family reunion.
     
    I came home to a telephone call to say a dear friend was in hospital. Now this man is full of years and is sick in the kind of way older folk are, a bit of heart failure, kidneys not functioning properly, hard of hearing, breathing problems etc. We love him dearly but at his age such things are to be expected. But I don't want him to die right now as I am the one arranging his funeral. So I hope he stays for a while until I feel I can cope. No, I don't want him on life supports I am not that selfish. I just want him to respond to the antibiotics.
     
    Also had a call from one of the people involved in assessing Ray at the Community Stroke Support Group. She said he has two more assessments to do, one physical, one neurological. They are to take place next week. One we have an appointment for with our regular neurologist, the other she will do. This is the way we do things in Australia, by assessment and recommendation. It takes the responsibility out of the hands of the caregiver to a certain extent. I can't ask my doctor to do these tests, he hasn't the time so they happen as part of the assessment process. I wonder how Ray will do as he is showing more signs of the dementia now. Still early signs, just more of them.
     
    Today at the hall he told me he couldn't go to the toilets because a sign said they were out of order. What the sign actually said was that they were closed. The hall users have keys to open them. So when I asked him to go to the toilet he got flustered and yelled at me: "I can't, the toilets don't work here." Luckily most people had left by then. But I could see the open door from where I was sitting so knew they were open. He could too. Just another sign that he is not processing information.
     
    I am having our grand daughter for a sleepover on Thursday night, her Mum needs a break, she is in the last two months of her pregnancy and is getting very tired. I don't mind as it is one of the things I so like doing. It gives me an opportunity to go to the park and have a swing, to do wild gypsy dancing wearing long beads and swinging a scarf around my head. There are things you can do in the presence of a four year old that you would be certified for if you did them on Main Street.
     
    My life is a happy-sad mix, just like everyone elses. The storm comes in and I ride the wild waves, sometimes spending longer than I want holding on with my fingertips to those things that bring reassurance - friendship, faith, family. Don't hold your breath, waiting for the next exciting episode, this is not a soap opera, this is my life.
  9. swilkinson
    Most of my chatting time with other women comes by phone. I can't go to the coffee shop or out to lunch by myself, Ray always has to come too so the talk is always general and not that kind of talk women get into to problem solve. Over the last few nights I have had phone calls from real time friends not seeking advice but using me as a wall to bounce information off. Discussing problems in this way is good if the problems aren't too big and at the end you might not have the answer but you have explored a few blind alleys and crossed them off the map.
     
    This is one of the things we do here on the message boards and in chat. We pose a problem and other people throw their 2c worth in and sometimes one of those postings provides us with an answer or something we can try. This is a great use of our experiences as we feel we did not go through all of this for nothing but what we have experienced in some ways can help others.
     
    Last nights call was from my sister-in-law. She is married to Ray's brother. We have that in common and not much else. She is of European descent. Like a lot of people in the early 1940's her mother tramped Europe, eventually with two small children and survived by staying ahead of the war. We think the war ended in 1945 but for a lot of people it went back to local skirmishes so her mother just kept on moving. She finished up coming to Australia but by that time her husband, unintentionally or not, had left her. The rest of the story is hers but I'm just putting this much in for background.
     
    My brother-in-law is disabled after a really serious car accident. He was put back together in pieces and his body healed so he can walk, talk, but not function fully so he can be left at home safely but doesn't have a lot of initiative to do much for himself. Unfortunately his head injury was enough to change his personality. He hasn't worked since so my SIL works, looks after the house, a small acreage etc. She thinks I have a big job but hers has been going on now for about 28 years!! She is a hero to me. Mostly other people don't see her that way. She never has a pity party that I have seen but she is pragmatic in a way only Europeans can be and her tongue gets away with her sometimes.
     
    Last night she was telling me about a water pipe she was trying to fix. She noticed she had low pressure and went across the paddock to where the pump is in her dam and traced the waterline back. Sure enough, there was a patch of green grass, a sure sign that water was bubbling out. So she dug up the pipe and cut around the hole and put in a joiner. A few days later, same problem. This time the ground was damp a few feet further down so she repeated the process. Then just a few days later she noticed the pressure was down again. By this time she was getting frustrated. Back to the waterline, and there between the two new joiners was a damp patch. As she said:"I dug along the pipe and this time I did what I should have done in the first **** place, I cut out a section of pipe and replaced it with a new piece and joined it up properly."
     
    I was just reading in the paper where some of the practices of doctors are being questioned by the medical boards on the same grounds, where they fix a problem by adding tablet after tablet until the patient feels worse at the end of the treatment than they did at the beginning. Maybe like my SIL they at last need to look at the problem with a view to fixing it permanently instead of just doing a quick fix.
     
    I enjoy my talks with her, we don't solve any of the problems of the world but we both feel better when we hang up and go off to bed.
  10. swilkinson
    I have just been on the phone for an hour and a half with a friend who was recently widowed on the other end. Her husband died eight days ago and was buried on Friday, the visitors left today and she was ready to be debriefed. I don't mind as I am trained in this sort of thing and she is a good friend.
     
    What worried me most about what she had to say was a statement that she has always "just followed along" behind her husband. That although she has had what others would see as a career she was only really marking time until her husband retired. Like Ray he retired early and although they did have those years of travel and following the sun that most think of as what you do when you retire she always felt that she was uneasy with the situation, always fearing that he would over-reach himself because of his poor health.
     
    The reason I was so worried about what she had to say was that there is a small echo of what she said in my life. That uneasy feeling that I get as a caregiver that if Ray and I have a happy day today we will somehow get to pay for it in the future. That we should somehow have "made the most of what we did' knowing somehow that we would not always continue to do those things. Where in the name of goodness do these guilt-ridden thoughts suddenly come from?
     
    A posting I just read was about whether or not you feel guilty for having your stroke. Well, if asked as a caregiver if I felt guilty about Ray's stroke, I might whisper "yes" because sometimes I do. Not that I drove him to it but I saw all kinds of warning signs (particularly of the diabetes)and yet didn't somehow force him to take better care of himself and take his health seriously. Then as now I could only tell Ray so much before he built up a head of resentment and did the opposite of what I had suggested.
     
    Women are supposed to be the caregivers, or that was an assumption in the world I grew up in, even as a post-war baby and a baby-boomer to boot I was still brought up as a future wife and mother. My sister, born three years later seems to have grown up in a different world, where the words "careers for women" were already in vogue. But in my eyes women had jobs, before after or during marriages but only to earn enough to keep themselves and the children in "little extras", never as a career. And Sandy, please don't jump on me for saying this again, I never imagined women could earn a lot of money. It just didn't happen in the world I was brought up in. So when I went out to work I got a "job", worked until I married, stopped for children, worked a little, then part-time, then full time but still making my home, husband and family my major focus.
     
    I am not apologising for all this, it is just the way I looked at life. I think the feminist movement changed my outlook a lot, and for a while I was a housewife/worker/feminist if there is such as thing. My plunge into theological training honed my defensive argument skills and raised some eyebrows. Did real women think the way I did, some asked, you know, the ordinary women in the pews? How should I know, I answered. My own views change a lot, swinging between the old me and the new feminist me, influenced by what I am reading, who I am listening to. Come back to me in a while and I will tell you.
     
    I left after a year in college and came home to my old job, the housework, the family. I took on a new split job, part-time parish assistant, part -time public servant. Nothing major changed until Ray's major strokes. Now I have to be housewife, mechanic, gardener, assistant -in- nursing. I have a really mixed bag of roles, as all good caregivers do.
     
    I don't have a husband I can follow now, I have one I have to walk beside, hold up, struggle with against all the difficulties he faces. I have a husband who cannot hold me up either. I do walk behind him but only when I push him in the wheelchair. And although I would love to be able to do all that we had planned to do in our retirement, we can't. So our life is a compromised version of what we had planned it to be.
     
    No don't you feel sorry for me, as I said to my friend tonight there are a lot of light moments in being a caregiver, an early retiree, a woman who "can do a lot more than she thought she could do".
     
    Maybe being outside of the picture we had planned our lives to be like is like climbing to a higher point of the mountain than that which we would have reached treading the easier path. Maybe it is the rarefied nature of the air that takes our breath away and causes those tears to roll down our cheeks unbidden sometimes. Maybe that is why we are more solitary and yet stronger and sometimes even wiser than the folk we left behind on the lower trails.
     
    I was never one to look for trouble but when it came along as it does in all of our lives, I tackled it as bravely as I could. I still live life that way. I tackle one problem at a time as they come along. I don't look for trouble and I deal with each event as best I can. Maybe there is a better way to live, if there is I don't think I would have the energy to tackle it right now.
     
    "Oh, yes I am wise, but it's wisdom born of pain" from the song "I am woman".
  11. swilkinson

    100th blog

    By swilkinson,

    :cheer: :cheer: :cheer:
     
    Happy Century blog here. :music_band:
     
    I know I always have something to say on every topic now, but I have not always been like that. I once got a commendation for being a "quiet achiever".. Some of us are like that..... we sit quietly for years...the little wife and mother, raising the kids, cooking for the socials, turning up to help out at school, at church, wherever there is a need. Ask me a question once and I might have answered in a few sentences, one eye on the children, the other on the level of the milk in the jug or the need to clear the table of plates.
     
    When did that change? Well, in my late thirties I became involved with Lifeline, which is a telephone counselling line, run in association with one of the mainstream churches, but independent of it, training lay people as counsellors in a 20 week training program. That kind of program focussed our attention on our community and its needs but also on ourselves, "know yourself, understand others" was one of the topics I remember. It was a little like standing naked in front of a mirror, it gave you nowhere to hide. Our facilitator was fairly brutal in her comments if she thought we were being Susie Sunshine or hiding the truth from ourselves or others. She would hammer away until we "fessed up" to that secret we had been hiding.
     
    I remember a friend of mine would always enter the room five minutes late. She would heave a big sigh and with a warm smile say:"Sorry I am late, I've just been so busy, you can never imagine....." and off she would go batting on about her busy, busy day. This lasted a few weeks and then *L* our leader came in with a huge clock under one arm. She laid it on the table and minutes later in walked my friend. *L* let her have her say and then said:" *M* I think I have the solution to your problem." and handed her the clock. *M* stood in silence with the thing clutched in her arms. Then *L* said: "You will see it is actually an hour fast. Keep it that way and I can guarantee you will always be here on time." And she was.
     
    I think about that sometimes, that huge clock and my embarrassed friend, she is no longer around now having died of breast cancer some years ago. I do think now that problems have more than one solution. We could have talked to *M* till we were blue in the face, offer her all the advice in the world and it would have done no good. She actually needed to "see" her problem in another way. And she certainly couldn't say she didn't know what time it was after that.
     
    I had a problem with my mother similar to one expressed in a recent blog here. Mum was well intentioned but did want to interfere with all aspects of my life, and my family as well. She did the same to my sister and alienated her for 14 years ( but that is another story). In my gentle way I got a reputation for not speaking out and so *L* stood me in front of the class with a placard with the label "mother" on her chest and said:"Come on, say to this sign what you want to say to your mother." I did, stumbling at first but gaining confidence as I went along. She told me to go home and practice some of that and then next time I had the problem with Mum to start saying how it made me feel when she said.....
     
    And so I learned to speak out, to have an opinion of my own and how to hold to that opinion. Hey, I am not always right in what I say, in fact I may be way off the mark, have missed all the key words and be blind to the real intent of what someone says but I am entitled to voice my opinion. And so I do.
     
    And because my life experiences have given me some wisdom then I try to bring that into play when I look at someone else's problems and if they are asking for help then I give them the benefit of what I think on the subject. If they reject what I have to say it is no big deal, there are no "one size fits all" solutions to problems anyway, we all know that.
     
    So what a I telling you in this, my hundredth blog? People change, we live and learn, particularly if we look at the advice of other well-meaning people and take from that whatever is applicable to our present situation.
     
    Looking out of the window it is still a lovely day so I think I will go pull up weeds in my garden and try to make the world a more beautiful place.
     
    Meet you in the chat room soon :chat:
     
     
  12. swilkinson

    levels of care

    By swilkinson,

    I guess it is hard for us, wherever we are on the globe, to put ourselves in someone else's shoes. We do that here on this site with somewhat mixed results. I post or blog something then someone else adds a reply. I think:"Where the hell did they get that connection from what I wrote?" I think it is the filters we all see through. I look at your life through the filtered experiences of my own life. So when you say "pie" I think " blackberry" and you might be thinking "apple". It makes communications a very zig-zag path some times and takes a lot of patience. To work out what thoughts are behind what someone else is saying is what shows the depths of our wisdom and the breadth of our concern.
     
    Ray and I are going through a rough patch at the moment. I say that tongue-in-cheek as it is really only me. Ray is fine, he has clean clothes, good meals, his seat out on the verandah and all is well in his world. If friends come along and the wife serves cake, that is an extra special day. And a good long afternoon nap and a nice dinner featuring some of his favorite foods makes it another good day for Ray.
     
    My world if very different from that. My present levels of frustration are mostly down to his rising levels of care. He is falling more, having more "accidents",experiencing the clonus more at night so my sleep is disturbed more. He is failing in perception now so conversations are more like the "apple or blackberry" concept I started with. He has never been a great communicator so I don't know what goes through his mind. I know now he hates the rush of going to doctor's appointments, the courses we take, all the routines of life annoy him. He tires more easily, pays less attention to what he is told, remembers less. His personal hygiene is starting to reflect this and he is beginning to look that bleary eyed, and bristle chinned specimen of an older, sicker man that we are used to seeing in the doctor's surgery, and he is only 63.
     
    But on occassions such as the wedding this afternoon I will wash his hair, supervise the shave and make sure he presents the best possible face to the world. And therein lies the paradox. Because all those who see us and know us will say how well he looks, how good he is doing, how easy it must be for me to look after him now. It is the contrast between the brightness of the special occassion and the dullness of everyday life. I put on as good a front for the world as I can manage. The sentiments here are not what I express to "friends" in the real world. To them I say Ray is doing fine. Because of that I feel unsupported when they turn away, satisfied that I am coping in what seems to them just an awkward situation.
     
    The levels of care we all give or need are so different here. There are the "happy ever after" stories of people who have 95% recovered, there are the "sadly slipping into a decline" stories of those whose strokes and other infirmities are slowly taking them to an early grave. I try to look at life on a sliding scale. I try not to envy those whose lot seems easier than mine knowing that many disabilities are hidden as Ray's will be at the wedding this afternoon. I wish I could be honest and open with my friends and still keep them but I know they don't want to know the grittiness of our everyday existence. I try not to exaggerate Ray's disabilities in order to get sympathy or to give myself a martyr's crown. I get by, just facing up to each new problem as well as I can. Life is good between the fractured surface there is some peace and contentment and today a quiet enjoyment of the changing seasons.
     
    I wish I was as philosophical as Jean, as patient as Joy, as forbearing as Sarah. I try to do my best here giving words of encouragement to others and a word or two of my own experience to show I do see what they are gong through. I am not Miss Perfect, or Susie Sunshine. As changes occur in my life I cope with them as best I can. At the moment I am trying to go through the mud to reach the hill where I can again see the stars.
  13. swilkinson
    I have been thinking about secrets. Hard not to with Pam's posting to think about. My life has always been an open book. If people want to ask me a question usually I give them an answer. This does not always apply to bodily functions. How I hate the question:"Have we opened our bowels today?" that you get from sweet faced nurses after operations. Of which I have had several. The answer is usually:"I have, how about you?"
     
    Yesterday we went to the "new" church Ray and I will be going to now. It is about the same distance to the north as our old one was to the south, Unlike England where a village is a parish here we have geographical boundaries like electoral areas as parishes and the church is located somewhere in that area. Our new one is behind our local shopping centre. I think this is going to be an advantage. Sundays will be something like, go to church, grab some groceries. The club where we have our bistro meals is close by so maybe it will be go to church, go to lunch. I can see all kinds of possibilities with that one. Not too far away is a local movie theatre so....
     
    When we went yesterday we took Tori who we will be having two Sundays in a row (long, tangled family story). We went in and someone greeted us there. One of the volunteers from Ray's Daycare. Nice, someone who knows Ray as he is and won't make judgements. Then another person from our past came over and so we felt, not exactly at home but recognised. I popped Tori into the Sunday school which at the moment is just a creche for the little ones, she was the first there and DELIGHTED to see colouring pencils, glue, pretty paper etc waiting for her, she was so pleased with her hour there, her parents will hear about it for the rest of the week.
     
    When we went to collect Tori the pleasant couple in charge chatted a bit and then she asked: "Are you Sue *W*?" I confessed that I was. She looked pleased. Apparently we have a mutual friend who told her that when she went off to have her knee operated on, which is apparently soon, I "might take over the Sunday school for her". Well, I was floored!! Here I am saying no-one will know me and some people, knowing me by reputation only, already have jobs lined up for me. Yes, I did do Sunday school for many years but that was in the 80's. As I've done a lot of work with kids since it would be easy to pick up the skills, pilot a program and get back in harness, but I have some choices now.
     
    There was a notorious criminal called Ronald Biggs, once reported to have spent some time in Australia, probably more than two years, some of it close to where we live now. He was wanted in Britain as a Great Train Robber and eventually fled to South America. He remained in Australia unrecognised. If it had been me someone would have come up to me and said: "Ronnie, mate, what are you doing here? Want to teach Sunday school? See ya there tomorrow."
  14. swilkinson

    Handed out advice

    By swilkinson,

    I thought I would do one more blog about the Stroke Ed group before it fades into unreality again. At the meetings we got quite a lot of hand-outs. No wonder we don't have trees around now, we have hand-outs instead. Government agencies are particularly good at hand-outs, it saves them doing the hands-on work.
     
    I just had a look at the "Carer's Strategies for Coping" It has all the usual stuff in it.
     
    I. Take one day at a time
     
    2. Recognise small successes. [We say that a lot to the survivors here but not so much to the caregivers. We don't say: "Congratulations, you cleaned up the latest "accident" and you didn't pewk, great! well done!"]
     
    3. Take it easy - let some things go
     
    4. Remember to look after yourself [i said I'd scream if one more person said that to me.]
     
    5. Recognition of your efforts may come when you least expect it [ or never, whichever comes first.]
     
    6. Focus on one goal at a time - learn to prioritise [ this is one of those "you should try" statements that I hate so much, of course I "should prioritise", but that is just one more thing to add to the bottom of the list.]
     
    7. Patience and tolerance - think twice before reacting :uhm:
     
    8. Accept yourself and your limits [this is refreshing, a strategy that deals with me and not the person I am caring for, for a change. Accepting myself with my limits. I'll try.]
     
    9. Include laughter in your day
     
    10. Remember the good times you shared [this is probably why I am here after almost seven years as this includes three children and three+ grandchildren.]
     
    11. Take time out - have your own interests [ I do have interests I can do with or without time out, but sometimes I'd rather have the time off instead.]
     
    12. Talk to others - keep in touch with friends [hello to those who chat, and thanks for being there.]
     
    13. Make time for your favourite activities [imagine a scream here if you will.]
     
    14. Have quiet time to yourself
     
    15. Use prayer and or meditation
     
    16. Try to keep a positive attitude
     
    17. Accept help when offered [and keep your sense of humour going till then. :big_grin: ]
     
    18. Accept support from family and friends [ there are a lot of posts on THIS one so I'll not add anything here. Lucky it didn't say "expect" instead of "accept".]
     
    19. Accept the situation
     
    20. Put things in perspective [ I think the social worker thought she was doing this for us. But unless it means sweep it all under the carpet, she failed.]
     
    21. Learn to step back [this should not apply when your survivor is falling, that is when you should learn to step forward. Or maybe if it is a bad day, out of the way.]
     
    Then mysteriously:
     
    22. Include your partner by:
    Asking their opinion
    Encouraging independence
    Planning ahead
    Giving them tasks to do
    Encouraging them to take part in decision making
     
    Don't get me wrong here, there is a lot of good ideas here. But is seems to me that this is about making yourself into the kind of person some government authority wants you to be. Follow all these instructions and then you will be the perfect, unpaid, unthanked and often unacknowledged caregiver.
     
    There was never any attempt to help us resolve any of our own issues. After all when our survivor stroked and our lives were changed forever we were mostly like the paid workers there, working eight hours a day, taking home our pay, spending what we had to, paying the bills and hopefully having some money left for ourselves. We drove our own cars, did our own chores and supported or were supported by partners who did the other 50%. We had real lives, separate identities, some time to ourselves, our own hobbies and interests. The loss of all that was almost as devastating for us as the stroke was to the person we are caring for. We might look, walk and talk the same but we are not. All that freedom to be ourselves as a seperate identity went when the stroke changed our lives forever or that is the way it was for me.
     
    Neither the course nor the hand-outs including these coping strategies seem to address that issue at all.
     
  15. swilkinson

    you're a winner

    By swilkinson,

    "Congratulations Mrs *W* you are our grand prize winner for today. You just won yourself a trip to the Bahamas" so said some enthusiastic American voice at the end of my phone line. She was less than enthusiastic when I told her I had an invalid husband, no money to fly anywhere right now, and no time to listen to her spiel. Well lucky me, on a Carers Pension, with a husband who's had five strokes, living on the East Coast of Australia and they are giving me a holiday in the Bahamas!!!! Just what I always wanted!Wake up from this, this is a nightmare.
     
    Don't know if you can picture me throwing down the phone and running but it happened. I felt as if the Devil was chasing me. It is not a good day today, I have a car to unload and it keeps raining, I have laundry to do, and it is raining. I have to go to the shops and pay some bills and it is raining. Did I mention - it's raining? It isn't even heavy downpour, fill your tanks up rain, green up your grass kind of rain. It is just silly gusts of rain, the sort that makes you wet in a short time out in it. So shopping is delayed until tomorrow, laundry can go out then, I have maybe two more loads to do.
     
    I am still coming to terms with the closing of our church and the end of that era. Ray still went off to Bible study on Tuesday, he can't do that forever but for now it is a comfort to him to still go on with some of the familiar routines of his old church life. This coming Sunday we will go and try the "new" church. I hope the folk are friendly there and there are at least a couple who comes over and say "Hello" and introduce themselves. It will be some comfort. But it is not going to be "life as we know it". I am trying not to dwell on that thought right now.
     
    Congratulations Mrs *W* you have been selected to go through life with a lot of little niggling problems that won't kill you but will take a lot of the shine off of life. Quit wasting your time expecting to be happy, the glamourous holidays-in-the Bahamas life is not for the likes of you. And you can also get over the feeling that life is out to get you some days. It is not about you, you have very small problems compared to a lot of others on the planet.
     
    My phone still rings with the church folk, I guess they want to reach out one more time for reassurance. It is sometimes hard being an Earth mother type as people look to you for comfort. Sometimes I can give and give, sometimes I can't. I've said a couple of times today: "I don't have angel wings." You know those big white feathery ones that remind you of Pegasus the flying horse. I think some people do think I have them. They ring me with their troubles and out comes my magic wand. But today the batteries are low and there is no glow at the end of the stick.
     
    Congratulations Mrs *W*, you just got yourself a dream holiday. Pity you can't take it. Oh well I guess we will just ring someone else.
  16. swilkinson
    This isn't about how to be a good carer - it is about the differences that show up in disasters.
     
    We have just had a cyclone up in northern Queensland, right in the middle of our sugar cane and banana belt. The damage has yet to be assessed but already there is talk of billions of dollars. Not in compensation but in lost income and assets. So far no reported loss of life but who knows? It is never reported how many people have strokes, heart attacks, commit suicide or die younger than they would have as a result of natural disasters.
     
    Of course the people of Northern Queensland are reported as a tough bunch. They live in a climate that is hot much of the year, where there is always not enough rain or too much. To a certain extent they rely on the "dumps" of rain from summer storms and cyclones to fill the catchments of the rivers which all flow out to sea and to cover the valleys with inches of water to replenish the underground water supplies. Life is extreme, on the coast there are sharks and box jellyfish , the sting of which can kill. Inland there are venomous snakes and in the inlets crocodiles. You live there because you love the place.
     
    The centre of the cyclone was Innisfaill, a small town between two cities, Townsville to the south and Cairns to the north. This is the coast where the oldies flock to in winter from Victoria, Tasmania and even parts of south western New South Wales where winter temps drop below freezing from May to September. The oldies live in relocatable homes (in some places called manufactured homes) in large spacious parks close to the water. Luckily most of them are still at home as yet and haven't headed north. In a months time it would have been a different story.
     
    What does our Government do in emergencies? Each State has a partially government funded State Emergency Service. These are the guys and gals who put tarps over your roof when the storms hit. They also co-operate with the Bush Fire Brigades and other emergency services to provide muscle. They are already in the area. The usual charities like Salvation Army, Anglicare, Red Cross will be on the scene to assess immediate needs, there will be an appeal. The Federal government "may" call out the army etc to provide demolition crews and installation crews to put up bailie bridges etc. It is all done pretty fast.
     
    But as with any government operation a lot is overlooked so that is where the fund raising bodies come in. They give emergency money, your house may be gone but you still have to pay your phone bills. There is some rorting of this system always but usually it is pretty well respected. Financial counsellors move in to help you stall the banks, counsellors to help your children sleep without nightmares.
     
    Food, water clothing and shelter are the first priority and the State government will bring workers in to help with that. The people will rally round and help each other too, they are country folk and used to helping neighbours. If you can't get a relocatable home you can sleep in a tent with your rescued goods in an old shipping container. Power plants and generators are in large planes on their way. Neighbours from hundreds of miles away will send a truck to help in the convoy work. Telephone and power restoration, reconstruction of roads and bridges etc all take a lot longer, that is where the bureaucratic red tape and all the angst comes in. And the s-l-o-w assessment and payment of claims of the insurance companies.
     
    But the residents of Innisfaill have already set up their own emergency aid stations and shopkeepers have BBQ's and food stalls to feed the workers. No-one will starve but then there are only hundreds of people, not thousands to cope with in this sparsely populated area.
     
    Kind of reminds you of some families doesn't it? They rally round when there is a crisis. Some of them leave too soon to be of much help, but at least they were there for a while. Others are practical people who are there to give you real help for as long as you need it.
     
    I thought of writing some of this down as a few of you have PMed me already.
     
    Thankfully al of this is happening 1600 miles(2095 kms) away from me. But we are part of the same country and so if there is an appeal we will give as we always do.
     
    And like Katrina and all other disasters there will be people who survive and come out stronger for the experience and those who give in to depression and illness or break under the new load they have to bear or even go down financially below a level they will never recover from. Not everyone will receive aid as a lot because of pride or whatever will never even apply. Life is not fair and equal and whoever said it was must have been thinking of some other planet.
     
    Guess all we can do is pray for the people inundated ( literally as it is really raining up there) and distressed by what has happened to them. It isn't their problem alone either, bananas and sugar will both be higher priced this year and sadly some of our snow birds will have had their winter nests blown away.
     
    For Australian news try: www.ninemsn.com.au should be news on the cyclone there for a while.
  17. swilkinson
    I think of my first introduction to life's troubles, was when I was about eight years of age. The death of a really special person in my small world. That is the one outstanding traumatic event in my primary years.
     
    I had a good friend called Jenny, she wasn't a personal "best friend" I had one of those too, a friend called Jean who I am still friendly with after 50 years. Jenny was a wit of note, at 8 years of age she was smart mouthed, clever, exceedingly academic and not bad at athletics. Given she was also small, Welsh and a girl she was going to be our first superwoman, and we all knew it.
     
    Jenny had a "gang of four" and I was one of them. This meant a lot to me as I was a migrant child with not a lot of friends. Jenny had head-aches, she would go a bit red in the face and have to lay down. She did not play on this illness, being a comic this meant when she was supposed to be sitting down taking life easy instead she would roll on the grass, laugh until she almost cried and we would all do the same. She was leader of the pack.
     
    Then we came back from our long summer vacation and Jenny was not there, she had "had an operation" during the holidays said our new teacher. Jenny came back for a visit just once, she was thin, wore a headscarf and had lost her light-heartedness. She listened to all WE had done but didn't share what she had been through. We found out afterwards she had had an operation for a brain tumor, the cause of the head aches. But in our eyes she was still Jenny, our chosen leader. We so looked forward to her coming back to school and leading us into a new bunch of mischief.
     
    We were all stunned when three weeks later the teacher announced that our friend Jenny had died. DIED? That was what old people do. Not young people like Jenny.
     
    I think that was the last time I was a member of a gang, an insider, a laughing, let-it-all-flow person. I did hit that phase again later in my teens but not with full enthusiasm. I think I will always still be a part of Jenny's gang maybe because I never got to resign. It still seems a bit unreal because I didn't get to say goodbye to Jenny. Small children were not supposed to attend anything but the funerals of close family members, and in some cases I think the same applies today. There was no counsellors rushing to school to help us all cope and nothing happened when a child died who attended your school except for a minute's silence when all you could hear was coughing, shuffling of feet and some stifled giggling among the kinders.
     
    I don't know why I thought of Jenny today, maybe it was the bright headscarf I saw a child wearing on Friday when we went shopping. A small brown eyed child with a laughing mouth but sad eyes.
     
    Some parts of our lives are like patches of quick sand, we stumble upon them on a long stretch of sand that seems peaceful and serene, we don't see the warning signs that have fallen face down on the sand. Strokes affect the lives of some people just like that because they are sudden, seemingly come out of no-where and the life you had can be sucked so quickly down into them.
     
    I often ponder the posts here, re-read them a few times, coming back to ones that I think are particularly relevent to what I am going through at the time. I think the written word has a lot of advantage over the spoken word. You can go back over it until you can get the meaning behind the words.
     
    I know like Asha said in one of her replies to a previous blog that we don't feel that we are "wise enough" to reply to posts or blogs and some people can't spell or write what they want to say. But we have all had experiences that are worth sharing. And we can enrich the lives of others by using our own experiences to support and encourage others.
     
    We all need signposts and bus seats and wailing walls. A signpost points the way, there are some great signpost people here. A bus seat is somewhere to sit and wait and that is what some of us do in chat, we sit and wait and someone comes by and chats for a spell. A wailing wall is where you just put your head on those sun-warmed bricks and cry out your troubles. Those cries echo through our Newbie posts and other forums. Go gently with Newbies, remember when you were one.
     
    That's me waxing philosophical again. Funny what memories can be stirred up by such small events on the pathway of life.
  18. swilkinson

    greener grass

    By swilkinson,

    Don't know if you ever played a game where you had to complete proverbs? I used to play it as an icebreaker when I was a Tupperware lady over a period of eight years.
     
    It goes something like this. 'I am going to give you the first half of a proverb and I want you to complete it for me. Ready?"The grass is always greener....?"Lady eager to win the first prize:"when you mow the lawn?" Lady next to her:"when you water the lawn?" This is a good place to stop and give them both a prize. Because the secret of life is not to know the RIGHT answer but to know AN answer. And the aim of the game is just to engage them in ideas, to put them in the mood for the sales pitch.
     
    Now I have been on this site since last May, in that time I have become a prolific poster, a blog writer and a chatterbox. And I have enjoyed every minute of it. Sometimes now when I am looking at a thread and I see the answer I have posted to someone's question back in my first months of posting I find I think differently now. More water under the bridge since then, older and wiser, maybe I have gained some knowledge of that particular area of stroke that I didn't actually have back then. The answer I gave might have not been the exact answer I would give now but it was AN answer.
     
    I want to encourage everyone who reads this blog to reply to the posts of newbies. It is a terrifying feeling to be all alone, as a survivor, as a caregiver or as a family member. What a relief it was to me after my first post when I came back on and I had four replies. Four lovely people had reached out to help me cross from my lonely room in front of my computer into the Strokenet family.
     
    I am thrilled with the number of newbies we have had join lately, there seemed to be a lull for a while and as some of the people who were here when I first came on dropped away for a variety of reasons I am sure I got a bit worried. What if so many people left that there was no-one on here when someone needed help? I know there are over 4400 members but some of them have never posted, some rarely post, some post regularly but not every day/week/month. What if someone came on with a need and there was no-one there to answer? Seems unlikely that would happen.
     
    Now we are having new blogs too and that is good. If someone like me can do it so can everyone. It is like writing a letter or a report so if you've been a business person you can certainly do it. Or reprint a joke, or write us a poem or post a new recipe we can all try or at least yearn over. And a photo of you in the Gallery helps newbies put a name to a face. I am sad that some of the great bloggers like Cinder have now retired from the site. Like so many I come on several times a day and check the posts, blogs and Gallery, learning so much about how people cope with their stroke or with their partner's or parents' stroke that I become a better person just by associating with such great people.
     
    I have a lot of worries on my mind right now. But in coming here I see so many others do too and they are coping as bravely with the hand they have been dealt as they can. And I need to too. So thank you all who honestly share their ups and downs. You really ARE a support to others.
     
    So thanks all, for those in chat, for those who post, for the picture in the Gallery, for the PMs and the emails. I appreciate them all. Thanks to the staff, the hosts and the CEO too for having this site available, free of charge, 24 hours a day.
     
    The grass may not be greener at your house than at mine but by showing me how you deal with that grass you show me how green my grass can one day be.
  19. swilkinson
    "HI everyone. Boy have we got a full program today. Here are the highlights. Now, how would you like to tell us about your week?"
     
    So started today's Stroke Ed group meeting. Exciting eh?
     
    Then we run through the program a step-at-a- time. Some of it is quite good, quite interesting, quite well-balanced. But it is all words, words, words. I for one feel as if nothing goes into the program that will actually help. When the stroke survivors or caregivers are giving imput the caring professionals nod but the answers are the same old herrings: take care of yourself, learn to lift correctly, get plenty of exercise, get plenty of sleep.
     
    Now we come to the HOW, or maybe that is HOW THE H**L, of the matter. If I am going to care for Ray for 24/7/365 how exactly am I going to get to exercise more, relax more, get some of my old life back? How am I going to act as motivator for my survivor, do the inside and outside work, keep up a social and spiritual life, keep up with friends and family etc, etc?
     
    One of our survivors is a Veteran and his carer gets two days a week one-on-one care for him so she can lead a bit of a life, of course she also has a four year old so I am not saying she has it easy. The other three survivors are much less physically handicapped than Ray, although two live alone so have their own set of problems with that.
     
    Two of the survivors and one carer seem to have dropped out of the program and I can see why; for it to be of use to us it has to be relevant. It has to actually improve the life of the carer or the survivor or preferably both. It has to stimulate thought and motivate action. There have to be practical applications to add to the theoretical lectures. With two more weeks to go maybe they are saving the best till last?
     
    I once did an exercise in class called "The Empty Paper Bag." It was about a little boy who came late to a party. The hostess was giving out presents and the first children in line got some fine gifts, the children further down the line got some okay stuff but could have been happier but the little boy who came late got an empty paper bag. At the end of the story which was a marking essay I asked the class what they thought the boy should do with the bag. Some people said he should ask the hostess for some party goodies to take home. Some said well that was silly because everyone should get leftover party goodies. A couple of girls said that if it was them they would go straight home (out of shame or embarrassment I presumed).
     
    The answer I liked best came from one of the mischief makers of the class. He said the boy should blow up the paper bag, hit it to make it "pop" and then grab what the other kids dropped!!
     
    I guess we all get handed an empty paper bag sometimes, and each of us has to decide for ourselves what to do with it.
  20. swilkinson

    Woman power

    By swilkinson,

    I don't praise my sister very often but I do praise her for what she did today, she saved me money on a washing machine. Here we bargain shop as you probably do by looking for the best price. You start at one of the upmarket stores to get a basic price, go round the corner and ask their price and then go to where you think you might get the cheapest price. So we did that and the cheapest place salesman said:"Yes, we can meet that price." And she said;"Is that all?" And he said:"NO we can go maybe $10 lower" which made it $539 "to $530". She was on him like a cat on a mouse."$530., okay." He said:"Sorry, $539" She said:"No, you said $530." This salesman was young and of middle eastern appearance and I think admired her guts. So he trotted of and saw the head salesman and we got the washer for $530. She was so satisfied with that decision she decided we would go find some lunch.
     
    Trev looked after Ray while all this was happening. One up for Trev, one I have to tell the social worker about. Then after we came home Trev suggested we ask *B* next door to keep an eye on Ray so we went and did the pick-up too, saving money for delivery. How's that, two lots of delegation in the one day?
     
    Next week I have to buy another car. I have been contemplating what shape the car should be. My hunch is to get either a station wagon or a hatchback, and discussed with Bessy the merits of a smaller car and the saving on petrol/gas. I also have to think how I will get a car that can hold Ray and I, the wheelchair and the shopping, or Ray, me, our son Trev and possibly our grand daughter Tori as we sometimes take them to the beach. This is also our holiday (?) car so it may have to sometimes hold the wheelchair and a couple of suitcases. This is not a rush out and buy the first thing we see decision, I want the vehicle to be one suitable to our needs and within our price range and above all reliable.
     
    I've read a few blogs and posts about how hard it is for caregivers to change their thinking and take over the role of their survivor and this applies particularly at times like these. Ray was the one who made decisions on car buying, not me. This car is going to bite into our rainy day money in a serious way and I am not a person who feels adequate in these situations so I can't say I feel confident that I will make the right decisions here.
     
    I would value all the prayers, positive thoughts etc that you think appropriate to come in my direction as I ponder this. If this is how a woman of power feels I think someone pulled the plug out.
  21. swilkinson

    empty chairs

    By swilkinson,

    The "Craft girls" cleaned out their cupboard today. Of course I said I didn't want anything. It contained a lot of books, patterns, bits and pieces we had brought in over a couple of years. One of our ladies said she'd box the leftovers and take them to the OP Shop over at the other church. She took six large boxes and we all took at least a shopping bag full home. None of us "wanted" anything but somehow you just know that jar of "tinkle bells" or card of buttons will come in handy some day.
     
    We also washed the cups we'll need for the closing day tea, pulled down the posters for the family services we've held once a month for so long. We looked back at the empty walls and the empty chairs and it all looked so hollow. In theory all the furniture and fittings will be removed from the church and housed somewhere else. In theory. But in fact it will probably sit in some old dusty, cobwebby garage and after a while someone will come along and ask:"Why are we keeping this old junk?" and someone, not aware of where it all came from will reply:"I don't know, why don't we just throw it all out?" and they will.
     
    While we were there the husband of one of our local ministers came to take the old upright freezer to their place to be used as food storage for the Samaritans Food Chest. It will be used for a while and then be thrown away, as all second hand me downs are eventually. I like to think of old ladies being handed apple pies and icecream stored it there. And youth group leaders looking for the hamburger or the BBQ sausages, and the kiddie time helpers looking for more fish fingers. A new life for an old appliance.
     
    We will all be recycled too, the craft group "girls" will find other uses for their hands, knitting rugs for the nursing homes or tiny garments for the premmie babies at the hospital. The willing workers will work for another charity or find a niche in the kitchen of their "new" churches. We will all be okay. We are all strong women especially these widows. Most of them have been carers too, for aged parents, brother-in-laws,nieces and nephews, a dying husband and in some cases several others. They have the strength built of caring and the wisdom born of pain. And Ray will miss being the spoiled darling of them all.
     
    So looking at the empty chairs I imagined the congregation members, past and present sitting there, not as they are now, but as they were when last saw them. Chatting groups of men up the back, looking at wifes while they described the hole on the ninth, the last bowl on end eleven, the mechanic and what he said was wrong with the carburettor. I imagined the Sunday school children running in to show off the work to Mum and running back to be in the line for cool drinks and whatever the delicious plates of goodies held. It is not the beginning of the service I was imagining but the end, the slowly moving out, the emptying of the chairs.
     
    Just as today we took home our little bits and pieces so in less than two weeks we will take home our memories. And like the bits and pieces we will just take them out from time to time to see where they fit into what we are doing now.
     
  22. swilkinson
    What a day yesterday was . I couldn't believe I was not in the middle of a nightmare most of the time. There was a lovely blue sky when we woke up and it seemed like a really good day. I packed up all the things for church, got into the van feeling I had forgotten something. Lunch. Went back inside and got some sandwiches made and defrosted some cake. Ready, set, off we go.
     
    Got down the driveway across the road and went to put it into gear, nothing. Motor running, wheels not moving. Van full width of the road and nothing happening.The sound of mother revving on the road woke our son who came down to see what the fuss was. I hopped out , he hopped in, moved the stick, rocked the car, still nothing.
     
    He dipped the transmission gearbox, dry as a bone. Ah Ha! more fluid needed. He poured it in, it poured out underneath. Damn. By now it was church time and all those things I do each week were running through my head. He rigged up a bottle of oil, dripping into where the dipstick came out of and managed to move the van off the road and parallel to the curve. Thank goodness for that.
     
    Our one choice now was the old van belonging to our other son known as the "Green Treefrog" (long story) so I moved Ray, the lunch, the paperwork etc into that and set off. Boy what a journey. I had to drive it with one foot on the accelerator and one on the brake, we clattered and banged through the Sunday traffic but luckily no sirens behind.
     
    Got to church half-way through the service and after a short spell to catch my breath carried on as usual. The meeting that followed the service was an important one, the last before the closing of the church. I am the President so had all my paperwork prepared but it all went pear-shaped, nothing I had prepared was right, figures out, letters disallowed, a real Devil's playground. Won't say any more , don't want to spoil your views of Christianity, suffice to say we all finished up in tears, well the female half anyway. No way you can close a church without a lot of grief.
     
    Got back to the quiet haven called home and my sister and brother-in-law were there. They had been out for a nice lunch and were now at my place for afternoon tea. Of course my BIL complained that the scones were stale. And as he hadn't brought anything he should have been grateful for just something to eat.
     
    Then my sister said she knew I was stressed and from their point of view I should give up visiting Mum. That would solve the problem. Mum doesn't know me, doesn't remember the visits so why was I bothering to go? I'll leave you to ponder that one. BUT I made that choice a long time ago and nothing will stop me visiting my dear old Mum whom I love dearly. What does it matter that she doesn't know I've been there? I know I've been there and spent some time with her.
     
    There was one more thing, Ray was upset at dinnertime and the inevitable happened. I had had enough by then. I was totally frustrated with a day that went wrong from beginning to end. And the day before my washing machine had broken down, a bit fell of the motor, no repairing that it seems. So anything that had to be washed would have to be washed by hand.
     
    Today I had our friendly door-to-door mechanic here, he confirmed that there was little I could do with my van without incurring great expense. He tuned the "Treefrog" up so it sounds okay so I will drive that for a while while I look for another small car, possibly a hatchback that I can lift Ray's wheelchair into.
     
    While the mechanic was here the social worker from Stroke Ed rang up to say that she had the results of our "Are you depressed?" survey. Ray scored 45%, I scored 50%. Don't worry she said, we don't take any account of scores under 70%!!
     
    So now you know why I am half-depressed, half-distressed and totally frustrated.
  23. swilkinson
    My Dad often said:"It takes all kind of people to make a world". Ho hum, we would think, and what is THAT supposed to mean? Thinking back he was probably trying to console himself for having to deal with the more ornery ones, but Dad was no quitter and could be friends with anyone. I was just amazed by the variety of people who turned up at his funeral, all who had come to farewell, "dear old Pat", "me old mate Paddy", the "best neighbour ever", "someone I'll never forget" to quote some of the labels on the flowers.
     
    This reminiscing is brought on by three things, an old friend's serious illness and taking a card around the neighbourhood to get signatures, an answer to a post written by Tom (tdehaas) and the Stroke Ed meeting yesterday.
     
    There are all kinds of people in the my neighbourhood, but few who have been here as long as us, we have been in this house 23 years, but have had it for 37 years. We came here as newly weds, had two out of three of our kids here then went away for 10.5 years because of Ray's job. We came back with teenagers, three instead of two, then had our kids fly the nest and in two cases come back for a while, then off they went again. Ray and I are the "older couple" now, all our neighbours are younger.
     
    There is a couple our age over the road but all the others have young families, a single Dad with one child on one side a single Dad with two down the road, a nice young man who came here "single" and is now "partnered" next door on the other side has two teenaged daughters who come for holiday visits. All different people , all getting on when our courses collide which isn't often.
     
    There are all kinds of people here, caregivers and survivors and family members, extroverts, introverts, aphasic, physically disabled, ones with "invisible deficits". All kinds of people with one thing in common - stroke. But for the rest, it is gloves on and go to your corners somedays, and "I couldn't agree more" others depending on the topic.
     
    Rezdog/Tom's response to Larrys post on casual chit chat SO reminded me of my Dad who would talk to whoever would talk to him. Dad had a slight stroke maybe 25 years before he died, his greatest thanksgiving was for his "full" recovery. He would talk to anyone on any subject, no matter how little he knew about it (did I inherit that, do you reckon?) and so people loved or hated what he said but all of them liked him because he never held a grudge or remembered a slight, held out his hand to all, and a lot of times a helping hand at that. He just LOVED people, chit chat was never casual, reminiscing was great, he always knew someone who knew someone who knew someone who...
     
    And so to the Stroke Ed yesterday, six people who had had strokes with very different deficits, four people who cared for a stroke survivor with very different attitudes. How could life ever be boring when there are so many different people to get to know?
  24. swilkinson
    I seem to be lonely again. It happens from time to time, the usual routine folds up for some reason, Ray gets extra tired so we don't go out as much. Then the family get busy, busy busy with their own lives and we hardly see them. The world around us seems to grow quiet, Ray goes off for a nap and I am left here feeling lonely and a little out of sorts and maybe a bit sorry for myself.
     
    I don't think this is altogether about being a caregiver to a stroke survivor although that has certainly changed our lives. I think it has a lot to do with being middle aged. I look around and others seem to have so much to do and we don't. I know that is partly because we don't have a lot of money to spend on pursuits and besides we also don't have the energy. Isn't this what I asked for this year? Peace and quiet? But sometimes it is too peaceful and too quiet.
     
    I have just finished watching "My big fat Greek wedding." I remember some of the migrant families who lived in the town where I grew up, they seemed to have so many cousins, aunts and uncles, aged grandmothers dressed in black, old grandfathers with moustaches and walking sticks that they would wave at us kids. Ah, how lucky I thought they were because at my place there was just Mum and Dad and my sister and I. The typical English migrants - Mum, Dad and two children. This was the start of what was going to be called the nuclear family.
     
    When we left England to come to Australia I guess some of our relatives got offended. I know when I went back to England one of my pricklier second cousins said:"I don't know why you had to go to that place. What was wrong with you staying here? Why did your parents have to drag you half way across the world?"
     
    I guess that is a valid question and one all of our migrant ancestors have had to answer at one time or another. I think to Dad who was four years a prisoner-of-war in Germany the England he returned to was not the England of his dreams so he decided to make a fresh start. He tried living in the village where Mum had come from but we lived in a cottage "tied" to a job and when he got sick and couldn't do the job anymore (long story) he also needed to look for somewhere else to live, so rather than move a couple of villages away they moved all the way to Australia.
     
    Not a bad move, we all loved it here, Mum maybe less than the rest of us, but truly there are opportunities here that Dad would not have had back in England. What we lost was that large extended family that I sometimes so long for. The family of "My big fat Greek wedding." Of course it would not have been like that with them scattered all over England, the families in Canada etc. But we would have seen some of them and kept up with others by mail etc.
     
    Email and modern technology have made a vast difference to keeping in touch with family, and those extended family fourth, fifth and sixth cousins I have found through doing genealogy. But it can't replace the call-in-and-have a cuppa family. Or the come-to-our-wedding family or the cousins, ancient aunts etc that the Greek and Italian families of my youth had. Being part of a nuclear family can be very isolating.
     
    I guess we all yearn for things we don't have, closer relationships, warmer relationships, even noisier relationships. Middle age can be a time of great adjustment, factor in stroke and that can be huge adjustment.
     
    To look at me, a middle aged woman, a little overweight, always ready with a smile, a kind word or a helping hand, you would never see the lonely person I sometimes am. Sure I have plenty to do to keep me busy, too much if you look around and see the ironing has turned back into a mountain again and the potplants are peering out through a veil of weeds. But despite all that sometimes I have enough time to feel a little lonely. Like tonight.
  25. swilkinson
    This is a vent so be prepared.
     
    Ray and I went to the Community Stroke Support Service's Group Education program. This was week two, we missed week one because we were away.
     
    All the people there had come because they had a need. We certainly do as I found out today that the second care provision group appointed to find me a three hour respite has also run out of funds for our particular classification (it is a funding thing, where have I heard that before?) so my problem once more is frustration. FRUSTRATION!!!! x 100.
     
    In Australia we get care if we QUALIFY. Do Ray and I qualify? YES. But we go on a waiting list and then if care in our category (?) is AVAILABLE then technically we get carer respite, home care, whatever. Does this system work? NO. Why not? Because the demand for carer respite far outstrips the supply, so there are always people waiting, waiting waiting. Most carer respite is funded for Veterans, then extreme aged, aged and frail and lastly what is called under-aged care. That is Ray and me. Ray is under 65, I am under 60. If Ray was under 45 we come into the disabled working aged care and that is funded differently again.
     
    So off we go for our Group Education program. And there are ten people, six survivors who have had strokes of various kinds and four caregivers, three female, one male. All the survivors have different problems, different leves of disability/ability. ALL the caregivers have something in common though. FRUSTRATION!!!!
     
    So the four paid professionals start the 2 1/2 hour program, luckily it is the sweet little speech pathologist in charge. Today we are going to look at Memory, then at Communications and then the survivors will be assessed (again!) and the carers will have a little talk on Emotional Reactions. So far only two people have broken into tears and we have just started.
     
    I've got to say that although I had heard most of what was said before it was well done, bold print, words and pictures (one chap has aphasia and apraxia) and slowly and allowing questions. We manage to pass the first hour in safety. Again only one survivor cries as he cannot express himself, and he isn't the person with aphasia. A couple of the caregivers are starting to express their frustrations loudly and so is one of the survivors, the ST is trying to calm us all down.
     
    Now the group is split into two and I assume from what Ray said that he went through the sme assessment as he did before Christmas and he said it went well.
     
    So here were are looking at Emotional Reactions. The regular Social Worker is away ( thanks be) and a nice older lady who works with the Parkinson's group is our facilitator. It is soon on for young and old, we are shouting in our frustration and she is trying to shush us, keep us calm. Fat chance of that. She shuts the door and moves us up the other end of the room , hoping I think that the survivors will not hear the outpouring of raw emotion. I think I was the quietest at this point as let's face it I have worked through a lot in 15 years since Ray's initial stroke, and seven years since his majors.
     
    This is all raw and untended emotions, not suitable for a quiet room in a suburban shopping centre. It is more like the group therapy you see in movies about people coming down off drugs. The room becomes quite hot with all the emotion. And for a couple you have the feeling that this is their first opportunity to express some of this hurt. And then the ST puts her pretty face around the door and we are invited down to afternoon tea. Isn't that nice?
     
    So off we all troop for afternoon tea ( coffee, tea, cake and fruit) and there are our survivors looking a bit tired from their exertions but quite happy. But we (well me anyway) are all churned up with the angst and frustrations we have expressed and nothing to do but breathe deeply and drink our beverages like good little boys and girls. And then it is back into the main room for the summing up and we are off home again.
     
    So how should I feel now, a couple of hours later looking back on this experience? Remember when you had a sore and you picked at it and it started to bleed and hurt and throb and your mother said to you:"Stop! You are only making it worse."
     
    Well that's how I feel right now.