swilkinson

Ken Ray and I had an "I wish" session today. He wishes he had been able to get his driving licence back, if only for a little while. I wish he'd had just the one stroke and not the additional ones. But we both agreed that the way to go is to make the most of what you have and enjoy each day as it come along. Our Apex 40 Club is holding "Ray's picnic" on Monday on the Tuggerah Lake foreshore, this is the second picnic as we had one in January too. Ray gets a big kick about having a day named after him. I guess all kinds of good things can come out of the bad events in our lives if we just keep on keeping on. Sue. And Happy Easter to you too.

Sandy, I just said to Vicky Moran I don't intend the blogs to be sad. To me they are just a window into my world. Most are caused by a recollection of something from the past. It is about how I feel about what happened then. My family grew up in areas where life was structured for the masses not to move above their station in life. My Mum was told by her step-mother :"I know my place, and you should too. Don't climb above your station in life , you will only get hurt." You would have thought that the second world war finished this feudal stuff off but I think it was late fifties before England totally recovered and by then we were here in Australia. That was a freeing experieince for Dad personally but he and Mum still brought us up to what had been their parents values I think. It is a world as you say of many pernmutations, each one appearing normal to the persons whose lives it affects. Sue.

Put me on the list of people who would like their husbands to help in the decision making. Ray has no opinions, no preferences, cannot make a choice, rarely vioces a view. I don't know whether it is damage from the last stroke or whether it is the vascular dementia. :juggle: Maybe this is the part of life where you have to "be your own best friend". That means among other things taking your own advice. So work out what needs doing and tell yourself you have the strength and ability to do it and go ahead and do it. :cheer: We are here as back-up if you want and second, third, fourth opinion. Sue. :chat:

Hey Sandy, as you said the bag is old and frayed and it is time I pitched that "helper's kit" out. Most of the contents have gone way past the use by date. Okay, so now that I am not a helper how can I stop helping? Is there a local chapter of "Ex-helper's Anonymous" for that? Sue. :bookread:

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".

19th April 2006 will be the 7th anniversary of the first of Ray's two major strokes, the day that "retired" us both. It is funny that even though he has had five strokes that is the day I think of as being his stroke anniversary. Ray doesn't think like that at all, he is a day-by-day person so yesterday is over, tomorrow is yet to come, today is the day he lives in. So today is Monday and he has gone to Daycare, I should be up and doing too. Be thinking of you on 19th AJ. Sue.

Pam, sometimes we've got to take a step back to see things in perspective, and that is difficult with a new relationship. You, like me, are a bit of a rescuer, sometimes we've just got to let people learn from their own mistakes, however painful that may be. After all they can ask for help if they need to and we'll still be on standby with our "helper's kit". Sue.

: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:

Hi Amy I have a son in the funeral business so have just been talking plots. Of course Ray and I are older than you (63 and 58) but I am going to be buried if we are close by, cremated and ashes buried here if I am far away. I also like the family plot idea but will settle for just be buried in the same cemetry as my parents. Sue.

Hey Pam Resolving the past is somewhere in there, you can't drop it and move on, vestiges of the past trail along behind. There is an acceptance that has to come before moving on and after moving on. We just disposed of some furniture and I am reading endless piles of paperwork, sorting, sorting, throw this out, keep that. I know that some of what I throw away will be needed later and some of what I keep I will later throw away. Maybe I need that "self-appointed guardian of all truth" to sit at my left elbow and help with the job? Sue.

Kim , sweetie, it is hard to make big changes in your life. You will be homesick for about twelve months and then slowly forget. I think it is a balancing act choosing either being with your birth family, or being with your new family. Hope you feel better soon. Sue.

Hi AJ I know what it feels like to be constantly restating what disabilities Ray has and am glad it is me and not him who has to do it. I think he would feel exactly as you do"boys don't cry", "just get on with it","don't be a weakling" were all mantras he grew up on. So his response to doctors, health workers etc is "I'm fine thanks". Just as well I am sitting right there next to him and can state REALITY. One of my mantras since Ray's strokes is "LIFE IS" because on any given day it is whatever I say it is. It can be good to others, bad to me. It is my REALITY. So don't ever be ashamed of your feelings , they are your "LIFE IS". Sue.

Vicky Ray does his "own" exercises too, they are a cut down version of what he is supposed to do. I nag him because I want him to do the lot as set out by the physio therapist but something is better than nothing. I guess you get a lot of exercise working and running a household but sometimes the formal exercises are more specific at targetting certain muscle groups. I like the balancing on one leg exercise, now if you coud just learn to meditated at the same time....lol Sue.

Kim, you are so right , it is all about perception. We once lived in a town with a somewhat troubled reputation. A lot of the kids from the local school came to play in our yard. One of the "up town" people said: "Some of the worse kids in this town play in your yard." I said: "No they don't. The kids who come to my place are the loveliest kids around." and they were while they were there. No matter where you live there will be people who love you and do everything in their power to help you and some who will not. Be friendly to all, in your new job that is what will keep the customers coming back. Hope you find a lot of happiness in your new situation. Sue.

Susan and Rolly Congratulations on surviving another year together, because the stroke applied to both of you. On April 19th it will be seven years since Ray had his second stroke, followed a month later by his third. I thought life as we knew it had ended and in some aspects it had. BUT we are still here, still together. Big hugs for both of you from Ray and Sue.

Fred, your blog inspired us and I took Ray to the movies and saw "The world's fastest Indian" about a guy in New Zealand who rebuilt an old ex-army Indian motorcycle and raced it in Speed Week in Bonnevile Utah in 1967 and broke a land speed record. I will try to take Ray to a morning movie once a month and then out to lunch afterwards, it will be our latest 'treat'. Thanks for the thought, Sue.

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.

Yes, mourning the past is normal, thinking what mght have been is normal. And the ignoracne of the general public to strokes is normal too. Only advice I can give is hold on to the good things in life as hard as you can, the music of your life may be playing the darker notes at the moment but soonn the lighter notes will come tripping through again. You and Patrick have now what people only "hope" to have when they are old, some time to spend in each others company. Enjoy it while you have it and worry about the future when you're further down the track. You got a whole lot of living to do first. Sue.

Sandy, after dealing with some of this frustration I guess I am more cynical that I used to be. My natural optimism usually shows up sooner or later. I am going to see if I can join a carer's group that was formed for people who live with someone with a mental illness but has been widened to include those who live with anyone who neeeds long term care. There is ONE I know of for about the 3,000 people who need it, so I'll stand in line. Jean, yes, sometimes I feel I'll just put it all down here. I do it for myself but also for others who I know feel the same frustration but are unable to express it. Besides, those who don't like it can just read the happy ones can't they?

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.

Went to the site and read some of the words. Seems to me she must have been a hurt child at some time in the past. We all find our meaning somewhere and there are always songs to give words to the inexpresible. Sue.

Sandy and Lynn, I am somewhat of an expert on assisted living and believe me you don't even want to go there. Some of the staff in some of those places would make Attila look like a honey. Seriously, I think money can be quite a cushion and that people who are better off get better care. So save for that rainy day when you are old, widowed and in some cases friendless. Sandy, I have never worked in an industry where women got paid as well as you seem to, most of my dealings have been in the lower income level where the good things in life had to be saved for. Like Vicky, when I first worked full-time I did the work at home as well. There were no choices, no cheap labour, no subsidised childcare, no tax breaks and a woman was expected to work inside and outside the home. I guess in a way that makes caregiving easier as I am used to long hours. Mind you I would hesitate to spoil a man as Kim says she does. I look at Ray and see the results of that. He did the outside work, I did the inside work, now I do both. None of what he is capable of doing appeals to him and so he doesn't think of taking on even chores he could do. I think if I continue on here it will turn into something I should have blogged about. Sorry. Sue.

I think the unmarried but committed couple can be a very satisfactory relationship for two older people but unless it is explained and accepted by their family and friends difficult for those who are "signficant others".We don't on the whole live in isoloation but in a network of relationships so for those who can't work out what exactly their relationship to this new person in the family is there is some conflict. I remember a friend of Mum's whose middle aged son had a live-in ladyfriend. Mrs *S* had some problems with this, especially as he wasn't divorced so technically she still had a daughter-in-law, the mother of her much loved grandchildren. After some consideration she said to my mum: "I have decided. I will refer to Carol as *D*'s concubine." It didn't go well with the lady in question but I guess it was the correct terminology. Sue.

Fred and all, thank you for your comments. These people I met for the first time on Sunday are not "new friends" they may be in the future but at the moment they are people who have said "hello" once. Not one of them will ring and invite us to dinner, or offer to mind Ray while I do something in an emergency. Our friendships of 23 years can not be so easily replaced. Think back to the last time you moved from house to house and remember how long it was before the new place felt like home, before the next door neighbours became someone you could rely on. That is how long this will take. It was good that a couple of people said hello and I am grateful for that, but it will be a long time before what we had as a little church family at our old church is replaced by something equally familiar. As with stroke recovery it will take time and working at it to make us feel confident again. Sue.