swilkinson

I chose to keep Ray home and his family ignores me too. :Tantrum: I get sick of people saying what a great job I am doing. Sometimes I am, sometimes I am not. :cheer: or :juggle: Hang in there, vent when you need to. You are welcome to anytime. :oops: Sue. :friends:

I just read Heather's entry about not getting anxious for one day. I remember I felt that in the first twelve months after Ray's strokes. I felt as if I lost control every time even the most minor event happened, an appointment changed, a delay of some kind. Visits from therapists could send a ripple through the day. Their advice seemed to dominate our life, changing it forever. It is not like that now. I had a reply from Sherri that said she has accepted the new norm ( or words to that effect) and she is only twelve months out from the stroke. I think Ray was like that too. Once he knew he wasn't going back to work, he wasn't going to drive and he wasn't going to get much better he just settled down with his Reader's Digest books on the front verandah and that was it. That wasn't a giving up so much as a giving in, and sometimes I see acceptance as just that, a giving in to the situation. I know I will get some argument from others on that one but that is how I see it. My Mum used to do what Dad called "niggling away at it" with a problem. It was as though she was viewing it from as many angles as she could. Maybe this was a contributor to the series of ulcers she had too. She could never let anything rest. She had to know what it was about right to the minutae of detail. So I try to limit my worry time. Which means that if I lay awake too long I get out of bed and do something else to move my mind onto another track. This is a long weekend, the Labor Day weekend and last night was noisy with some neighbourhood parties. It was also League (football) Grand Final night so there were male bonding get-togethers too. Trev was busy with his mates so Ray and I watched the match together. I thought it was pretty good, the teams were evenly matched , the game was fast, there were no major infringements of the rules. The better team on the night won the game. Pity the other guys don't get a rematch next week but that it life. When Trev came home he pointed out that the right team hadn't won, the referees had made many mistakes and so there ought to be enquiries etc. I didn't even notice, too busy watching the game. So maybe I do have acceptance. The kind that doesn't look for trouble, that accepts life day-by-day. That sort of acceptance let's you go on with life without stopping too long on one spot and agonizing, or over-analysing, like Mum did with her ulcer inducing niggling away at a problem. There must be a lot of different ways of accepting the post-stroke life. And mine is to just work on it one day at a time. But doesn't that seem like marking time? Well, yes it does have some disadvantages. It does put forward planning on hold, it does deny that there will be great improvement and it does make life seem dull sometimes. For me the future ahead, brighter and happier as I saw it, did give me a lot of hope. The Bible says wisely: "Don't live as people without hope." But that is a harder one when life is without a bright future. My hope is now woven into the routine of our days. It is the little things that brighten the day now, a phone call from a friend, a bargain at the shops, even a cup of coffee out in the sun. I can see now the point in all those old movies where the two old people sat and watched life go by. It was a form of finding contentment in the day-to-day progress of life. That is probably that is where I am today.

A way around here is I say:"Hi, I'm Sue. Ray's wife. He would like you to speak with me on his behalf, here he is now". Ray says his little piece about me handling his affairs. They speak to me. If they don't want to make a note of it and have a form filled in we do that. Speeds up the process somewhat. With computers when X from insurance rings a message should spring up to say Ray has given permission for me to speak on his behalf. But the appointment changing thing applies here too. And sometimes I say sweetly: "Sorry that clashes with another appointment. Any chance of rebooking?" and that sometimes works. I get the feeling it is all a process and we are not people but "cases" to a lot of the medical profession. And only the survivor and/or caregiver sees the human toll this dehumanising process takes. Sue.

I once asked a man who was in a wheelchair how long before it felt normal? He said after five years you get used to it, after ten years you can't remember living any other way. It is nice when you get up and have a normal day. As a caregiver that is it for me. Ray has many deficits and I have to do a lot for him but somedays, after seven years, it just seems as if we have had the kind of day people of our age and lifestyle (early retirees) would have had. Sue.

I agree, It was hard for me too when I first left Ray and Mum home. But if you are ever to be an individual again and not "just a caregiver" there are times when you need to be solo. And putting guilt on someone for taking some time out is a form of emotional blackmail that I don't give in to. Enjoy. Sue.

When we went overseas the first time Ray was so worried about missing the plane he set three alarm clocks and put them in three different rooms. What a racket! Sue.

It has been a busy day in a busy week for me. I went to three different types of support group today. In the morning I went to a meeting of carers, in the afternoon Ray and I went to a funeral and tonight Ray and I went to a dinner meeting we have been going to on and off, once a month, for about 22 years. The support group I went to this morning was rather odd. At first there were only five people there plus two social workers. Then two more people came half way through the meeting. I had been lead to believe the meeting was for carers of stroke survivors, but it turned out three of us were in that catergory, two women had husbands with Parkinsons, one a daughter with a serious TBI and the last a son who had a disease which affected the top of his spine and may affect the cerebellum. What we had in common was that we all looked after someone and were all women. I asked one of the social workers how many people had been invited to attend and she said they had sent out 120 letters! If 120 letters were sent out and only seven people were able to attend it does tell you something about caregivers, they are mostly too busy to attend meetings! And this was with some respite being provided for the person cared for. I had asked Trevor to look after Ray as I was not sure how long the meeting would go for. The program was less than promising, a lady from Carelinks, a government funded group which should co-ordinate care needs took us through some of the services they may or may not provide according to how many of them are currently being funded. I had a couple of things to say about my struggles with getting my respite needs met and she agreed mine is probably not an uncommon case. The rest of the group looked very glum but said nothing. Then we went on to have lunch together at our own expense and at a small but very noisy restaurant so in the end we gave up on conversation and ate our lunches in silence. Not a very promising beginning. At the funeral this afternoon I read the eulogy on behalf of the family. I have done this a few times as you just need good diction, a steady voice and the ability to read. This one was typed so I had no trouble with it. You learn a lot when you have even the briefest look at someone else's life, this couple, known to us for 20 plus years I knew had one son, I didn't know they had also lost two children, a four year old daughter who drowned and a son in his teens killed in a car accident. Ray and I thought we went to support them but in the end gained as much as we gave. Our son supervised the funeral on behalf of the firm of funeral directors he works for so was very conscientious in attendance to the family concerned. We did go on to the funeral tea and had a lovely afternoon with a lot of our friends from our old church. It was with a shock after a couple of hours I realised we only had an hour to go home, redress and go out to dinner. The dinner tonight was a monthly dinner. The reason I call it a support dinner is because every dinner, during the after dinner interval at least a couple of people come and sit with me and discuss their family woes. This stems from the time when I did hospital chaplaincy and they encountered me in that role. So each month I do some counselling as people discuss their old parents care needs, confess in whispers their childrens drug problems, or ask for prayers for family and friends in need. I don't mind doing this. It is part of what I am as a member of that group, most groups need a chaplain. I always think of what a wise man once told me:"The Dead Sea is dead because it receives and never gives out." As caregivers we do need a lot of support, but we also need to pass that support on to others, not only in our own family group, but here and in other situations we find ourself in. You might not think of yourself as wise but as the song "I am Woman" says: "Yes, I am wise, but it's wisdom born of pain." As survivors and caregivers alike we have a lot of that kind of wisdom.

Tina , after I read your reply here I felt bad. I wasn't actually pointing to anyone about what he/she had posted, just noticed a general trend. I rang a girlfriend who had eventually left an abusive husband and asked her what had made the difference in the end. She said: "The bad times eventually outweighed the good." Whatever the circumstances you find yourself in right now, I support the person you are. Your decisions are your own. And we are here to support you in whatever way we can. Sue.

I just want to say this becomes a more complicated issue when there is more than one person you are taking care of. I still have some guilt about putting Mum into a Dementia Lodge in 2002. But when Ray had the stroke in 2001 and I was hauling Mum around in her confused state back and forth to hospital and then rehab I knew I had no options left. I had to look after Ray and could no longer look after both of them in a way that was satisfactory. The doctor asked me what I was trying to achieve and what would happen when I broke down? That is a question we need to ask ourselves, particularly when considering temporary respite. It shouldn't be our good health versus their comfort. Is it important to look after ourselves in order to better care for them? Yes, it is. So while we are here for the long haul there still needs to be some forward planning including the answer to the question: "What will happen to the one I am caring for if something happens to me?" Sue.

Robyn, there is truth in a lot of what you say about closure, but do still give it time. Otherwise the next emotional trauma will knock you down. Bodies heal, emotions heal, but at their own pace. The three of you meeting with the therapist together is a great idea. And as you say there is nothing any of you could have done, to prevent the stroke, the reactions that followed or how things have worked out. BUT learning from this expereince, and using it to make future relationships better is a good outcome. None of us are bullet-proof and whatever our status or position in life we are all subject to whatever life chooses to throw at us. That is what keeps us human. And how we deal with that is the big issue here on this board. Sue.

Heather Caregivers are not perfect. I rant and rave and stomp about like an elephant sometimes and all it means is that I am tired and frustrated and acting out my own pain. It doesn't mean I am going to quit looking after Ray or that I don't love him. Like Asha said, all married couples have differences of opinion, tiffs etc and it has nothing to do with the stroke. But it does, in my case, have a lot do do with the limitations the stroke has imposed upon Ray. Even after seven years I miss the Ray who used to be I suppose. Never will our lives be perfect, but so far, so good. Sue.

I negotiated a four day weekend with just our grandson for the last four days of his school holidays so will get to spend some time with him. It seems as if we have to "choose" between our survivors and our families sometimes. It is hard but I hope I will be able to look back at this time and appreciate the love we all shared. Sue.

As I read this blog I suddenly knew why Ray and I don't own a camper now. We loved to camp. Remember Ray had camped for many years while he was with Fisheries and being in the bush was his greatest joy. So while our family were growing up and right up until his major strokes in 1999 we camped at least once a year. When there were two of us setting up the campsite, fetching and carrying etc it was fine. Our one attempt at me doing it all on my own was disaster. So no more camping. You will get used to it if you are determined enough but it takes a lot of planning and a lot of work once you are there as you found. You really need another holiday just to get over it. Count me in as a SHERPA too. Just watch my many trips in and out of stores with parcels or back and forth with food etc at picnics and BBQs to see the extra effort needed to go anywhere with a guy in a wheelchair. But some days it is worth it just to be out in the world again. Sue.

I have noticed a number of posts dealing with a changed relationship after stroke where the survivor becomes abusive and verbally abuses the caregiver. I can't see why it is okay for a stroke survivor to be abusive? If they are abusive before stroke in a domestic situation it is a crime. We have a campaign here called "Australia says "NO" to abuse." which is about all forms of abuse, physical, verbal and emotional. All forms of abuse are a crime. Why then is it okay that a caregiver is subject to abuse after someone has had a stroke? I know for one I wouldn't be staying around if someone was abusive, whatever the reason. There are societal restraints even after stroke to stop a person being verbally abusive and if that is not sufficient there are chemical restraints. Are there mental health teams that deal with these issues in the US? I know I could get in touch with one here by phoning a telephone help line and talking to someone over the phone or arranging a face-to-face appointment. Most of these counselling sevices would be free. It is a government initiative here aimed at trying to keep violence from leading to crime or to jail time. Verbal abuse sometimes leads to physical abuse. And that can lead to permanent damage not only to the one who is the focus of the assault but also in some cases family members who become embroiled in the fighting. Children who witness abuse for instance can become abusers themselves in the future. Maybe I am seeing too much in some of the posts here but my advice in any case of abuse would be first get out, then get help. And if the abuse continues keep away from the perpetrator. Sue.

I am finding some disappointments in life in my forward planning. Because forward planning has always been one of the joys of my life. I was the kind of person who had goals, who looked ahead to well-planned holidays with all the right clothes packed. Who could tell you the date of Easter and all the long weekends in the year and what I hoped to do on any of them. All my childhood I looked forward to weekends, those wonderful two days with no school, when the world was open to do whatever you wanted to do. Right? Wrong. I lived in the days of chores and being the elder of two daughters had plenty to keep me occupied Saturday mornings and church on Sunday mornings. So that left Saturday afternoons and Sunday afternoons. Right? Wrong. Sometimes my parents had plans for that time too. And I had a younger sister so was supposed to look after her as well. But I did have some spare time, nothing like kids do today, and I walked to friends places, read, rode my bike,watched other people play tennis, sometimes just hung around. That was until my parents bought a small mixed business when I was aged eleven and had me as the assistant and then I only got Sunday afternoons off. When was fifteen we sold the shop and moved but then I was old enough to work in other people's shops. I guess you get the picture. When I went out to work I did get those magical weekends and they got filled with a lot of things I am not going to disclose here. But I did have some fun, did learn a lot about life and did plan ahead some. Then I got married and planning had to do with what Ray wanted to do, then where the kids fitted in etc. Then for just a few years we had those wonderful middle aged years when we had finally raised the kids who had gone off to make their own way in the world. Then we did go away for a few weekends, had some holidays including two overseas holidays, some further education for both of us and a lot of fun. Don't get me wrong, there had been some good times since Ray had his first stroke in 1990. We still had a fifteen year old but he was mostly raised so I went back and got some more certificates in administration and went out to work again. Ray was considerably slowed down but he went back to work after six months. I worked, he still worked and we still managed to do some extra things we wanted to do, like walk the nine miles around the base of Ayres Rock, we didn't climb it as the Aborigines who are the custodians ask you not to, and respecting their rights, we didn't. And maybe I accepted the changes as being part of middle age, a sort of natural slowing down of life. But then in 1999 Ray had the two major strokes and life changed and never changed back. Even since the major strokes some good things have happened to us, the coach tours we have enjoyed, the family gatherings, the birth of our four grandchildren among them. But then came the other two strokes and little by little because of his deteriorating health I have had to do more for Ray as he has been less able to do things for himself. My ability to plan forward no longer exists past the end of next week and even that could be a problem. Tonight I had to tell my daughter I couldn't have her children for a week of the school holidays. That is, in two weeks time. I would love to, this time last year I would have been able to but tonight I said I couldn't. I can't have a six year old and a two year old and Ray to look after for a week. It is a bitter pill to swallow. I would love to do it but I can't do it. I can't describe how that made me feel. Desperately disappointed is close, but so , so sad also. I love being a Granma and love having the kids here. But with Ray's failing health even thinking in terms of a week is sometimes too much. I guess I will have to leave the future to God. Maybe He can see it in a brighter light. That I myself can not see right this minute.

Mel, I was concerned about you putting your brother's contact information and exact whereabouts on your blog, I read it while those details were still on it. But I do find the rest of the details fascinating and will continue to read them. I know you are very proud of him and so want to share some of his story with your friends here. I am aware from my own blog that you wouldn't have to read many of them to work out where live, who I am and a lot of other details, certainly enough to find me in those internet white pages if you wanted to. I guess it is a risk I take. But I am also aware we do know most of the members but hundreds of "guests" also can read our blogs whenever they want so I don't put too much detail in. I am praying for your brother and if I was younger and not attached would email him too! Sue. :friends:

I'd like to echo Jean here. I think you need to physically distance yourself from your mom now. I had both my parents here just after Ray came out of hospital with his major strokes. Dad would call out through the night and I would run to him but that could have only gone on for a short time, we both knew that. When some one else is going to take over the care of your mom they need to be the primary carer. Maybe you could have a little ceremony for a few times. Say something like..."K is here to look after you now so here is the bag of what you need, see I am handing it to her now?" Then just walk away. It is hard to take time out for yourself but it is important to give some time to the kids too. So if you take too much time from them to give to your mom will you regret it later? Big hugs coming your way (((((((hugs))))))). Sue.

Good blog Ann. I know a lot about dementia in the elderly from having Mum here and am now learning about dementia in the middle aged from Ray. I will be a real expert when all this is over. Hope things work out as planned with Bill's homecoming. I'm glad you got the insurance worked out and don't have that hanging over your head. Life is hard enough without feeling your finances are up the creek as well. None of this is easy. Having a husband with early onset dementia was not part of my original game plan. And as you said it is like being a Mommy again. With many medical problems added to the mix and with them far beyond childhood in size and age. It really breaks my heart sometimes. As I say every day - so far, so good. Sue. :friends:

Me too , Ann, I am sending you virtual hugs and praying that the insurance company etc will see reason. It is hard enough to go through all this as a caregiver without the "caring professionals" doubting your word about your survivor's conditions. When I have made statements about Ray's various conditions I have had the raised eyebrow look, the depreciating smile and "Oh really, do you think so?" l would think I do know more about Ray's condition living with him 24/7, just as you know with Bill, as opposed to someone who has seen him for ten minutes or so. If you just feel you want to SCREAM, go right ahead. :ranting: Sue. :friends:

mjh, why not start an online blog here. Not with your everyday responses to life but some of those plot outlines. You might find someone who is willing to mentor you while you write a book. Look around and see if there is a writers group you could join. Even a published article or accepted short story might step you up to where you want to go. I think you need to have some positive outcomes to get your confidence back. Ellen, maybe you can garden for someone else? I had an aunt who moved into a small apartment. As she went on a walk each day she saw an untended garden. Long story shortened, she made a friend of the lady and together they brought the garden back to life. I guess if you want to be creative you start with the space you have and the materials you have. Put a few pencil marks on a piece of paper and see what appears, write a journal or type a blog. Offer to volunteer at a school, a church club or Seniors centre and see what happens when you are around others. Amazing what stroke survivors can do, you only have to look at the people here to see that. Good luck with it all, Sue.

Hey Karen, this is why we sundry our clothes and then IRON them so they keep their shape! Touche! And we do wear cotton for summer as it breathes and synthetics don't so it keeps us cooler. I couldn't stand it if Ray did the laundry as he would just put everything together (explains why he once found his underwear was pink from putting it in with Shirl's red cordoroy jumpsuit) and if Trev does it he hangs it all crooked. It is nice that Rob wants to help but I guess you just have to find other helpful things for him to do? Sue.

I enjoyed chat this morning, Wednesday for me,Tuesday night your time. It was good that there were a mixture of survivors and caregivers that came along. We are here to help each other. The caregivers can tell the story from their side, the hardships of changed finances, the burden of constant care, the great feeling that your survivor is just that a SURVIVOR and you can be happy he/she is still with you. The survivors help the caregivers to round out the picture, what if feels like to be a survivor, the frustrations, the difficulties, the struggle with OT,PT, the affect of many medications on the body. It is good to get an insight into what goes on each day for them too. Of course it isn't storytelling, more like a hint here and there so you may have to go to many chats to fill out the picture. Thanks for all who come into chats prepared to share. Chat is not somewhere where it is all grim either. You should be on some Fridays nights when we are all a little crazy and the fun is on. That is good too because most of us miss out on that relax after work that heralded the weekend. And if you are not a good typist and have trouble following the flow it doesn't matter. In any party there is someone who is a bit quiet for some reason and if you can encourage them to type a few remarks in , good for you. While I was in chat Steve Irwin's memorial was on too so I missed that. I know that Bessy and Cindy were watching as they made comments about it. Luckily I can go to one of our news sites and saw most of it in video replays and not doubt it will all be on the news tonight. Steve Irwin was a one-off but I've known a lot of blokes like him in the country - enthusiastic, in-your-face, a little too loud maybe but good at what they do. As Aussies say:"True Blue". They are what Australia was built on, before the investment brokers and the politicians and those who value the "bottom line" and not what it is for took over. And I thought how lucky I am to live in Australia, a somewhat classless society, where we still help the under-dog, the battler, the "poor souls". I hope it stays that way and people aren't judged by what they have, or how much they make, or how many of our resources they use up, but how much they contribute to our general well-being, how they bring up their kids and how much time they are willing to donate to help their communities be good places to live in. To help your mate is still a value to hold on to and I am proud to be an Aussie. Ray and I have had a good week, we had a couple of bad ones so it is nice to have this slow-down time. I could do a lot of things this afternoon, there's always plenty of housework , ironing etc to do but maybe I won't today. Maybe I'll take some time today to think about life and how valuable it is, to think about Ray and how glad I am that he has survived those seven years past the major strokes. And to think about all the people I value the most, my family and friends. Feel free to drop into chat on Tuesday nights. It might be in the Caregiver room but it is chat for everyone. We talk about so many topics, for over two hours today people came and went and the topics changed with the people. And maybe it will take you some time to ask all your questions but eventually you will get some of the answers you are seeking. Don't sit at home lonely. There is a wonderful life all around us. I think that is what people like Steve Irwin have to show us, the wonders of nature. But look in the background too, all the grasses and trees were there long before he found them, they are there for the rest of us too. Look out your window and even if the sky isn't blue and the sun isn't shining it will be soon. Lucky, aren't we?

Thanks Mel for posting this. I am the one who gets angry here, Ray is withdrawn emotionally so rarely gets angry. Mine is from lack of sleep, loss of control, frustration etc that keeps me on the boil at times. The rest of the time I am an "angel"?? Anyway I will try to get Time-out going here. I do step back from the trouble if I can but must remember the No-Nagging rule! Sue.

Been there, done that. I can saw down tree branches, clean out drains, climb on ladders and fix gutter brackets. I think I must have become a handyman since Ray's strokes hapopened. As Jean said I bet you sleep well! Sue.

I hadn't thought of this before Robyn but want to add that if Jane was like my Ray she wouldn't have the energy to initiate the call. Since Ray's strokes I always dial the number and hand him the phone, he can't initiate actions like that. Mind you he would be thinking about me all the time and maybe talking about me, just couldn't ring me. So PLEASE make a move and let her speak to you again. She might be longing for the call to come but be unable to make it happen. Sue.