swilkinson

Hey Fred It isn't the thought that counts in this case, you've got to go out and give it a try. Even if it takes all week to do a ful two hours work your caregiver wife will love you for it. In my case it is Ray making an effort to do something for me that counts instead of turning a blind eye to all that needs to be done. Hope Sprig comes soon and brings some renewed life. Sue.

Kristen I got lost on my way to Wollongong Hospital when Ray broke his hip. But I had never been there before in my life, that was my excuse, and the tears that blinded my eyes probably didn't help. I was still an hour late as I had to go back to the motel and pack our clothes and pay the bill as we were on holidays at the time. Even if I had been there on time there was nothing I could have done as I'm no orthopaedic specialist, I'm the woman who watches and waits, whispers a prayer etc. Luckily for Ray I am the woman who cook, sews, irons, cleans AND rebuilds the driveway etc. You can't fault me on my "cherishing" too as that is what I promised in my wedding vows. I think you do very well in a crisis and getting lost is the least of your worries as long as you can always find your way back home. Sue.

Ray and I last danced at our daughter's wedding in 1994, he couldn't dance post 1990 but I was actually dancing, he was swaying. He used to be a dancing instructor in his early twenties so it was a blow after his minor stroke in 1990 to find that one of the abilities he lost was to turn round fast, something essential for dancing. I guess we all have our dreams Vicki and dancing is in some of mine too. Never mind the slinky dresses and high, high heels. I think dream programs such as "Dancing with the Stars" (there is an Australian version too) are just that, the stuff of dreams. Sue.

Welcome to the blogging community Gail. Like yours my husband Ray has had multiple strokes, one in 1990 then back to work after six months off, two majors in 1999, forcing us both into early retirement, one in 2001, one May last year. He is left side affected, walks with a cane, has some dementia, swallowing issues etc. I've been a full time caregiver for going on for seven years. Tra,la,la,la life goes on. Sue.

Yum, we'll try this recipe next Saturday, I just LOVE corn fritters. Sue.

I bumped into the husband of an old friend of mine today. *J* and I belonged to a couple of the same groups but didn't become friends till we did a twenty week course together. For a while we were as close as sisters. Then we saw each other at least twice a week. After that we saw each other intermittently. Somewhere during this time her husband got transferred to the same work place. During a conversation he told me *J* had cancer and asked if I would like to join her caretaker network. This was a new idea to me so I said "yes". Roughly it meant I called in once a week and sat with her for about an hour while she did whatever. Sometimes I made us coffee and we just chatted, sometimes I brought my lunch. As *J*s cancer progressed her husband took leave from work to take care of her, firstly working three days a week and then using leave without pay (one of the advantages of being a public servant) up till the time of her death. I still went there when I could and he would pop out to the shops or do some gardening while I sat beside her bed. Eventually she died but only with a couple of weeks in hospital. I went to her funeral and went on holidays. Ray had the strokes and I never went back. I hadn't seen *M* since then. It is strange to see someone you have shared part of life's journey with in an unexpected setting, there we were standing side by side weighing fruit in the greengrocers down the road. He was a bit surprised to see me there and asked that question we all ask while we catch our breath: "So what are you doing with yourself now?" I gave him the short version, Ray had major strokes in 1999 etc. I think I was surprised that he didn't know about that or wondered why I hadn't been at work (?) but possibly by the time he got back from leave other things had happened. I wasn't surprised that he had remarried as *J* died 7 years ago but was surprised to know that his family hardly sees him now and he rarely visits them. At the time of *J*'s death they seemed like a close knit loving family. But obviously there are other untold stories there. So why am I writing bout this? Because today we had yet another "church closing meeting". We have to have these meetings because there are loose ends to tie up, people to return donated goods and memorials too (otherwise they will gather dust in storage or be piled in a corner somewhere) and the afternoon tea to plan etc. With each meeting our little group grows sadder and sadder as we contemplate the "splitting up" of our little church family. I am trying to picture the shape of life after that. How long before I lose touch with the network of friends I have built up over many years as we all go our separate ways? And at the same time the caregiver side of me looks ahead to a future without Ray, without the life we live now. I do take one day at a time but the future hovers there beckoning me forward. But like a mirage what I imagine is probably far different from the true image. I really hope that is the case.

From my experience, if you want to work in the morning start as soon as Brandon goes to school, wheel or sit Patrick within chatting distance and chat as you work, he will be impressed by your busyness, besides we all need company. I do some housework at night, ironing,cupboard cleaning, wiping down cupboards etc. Ray "holds" things for me, or I pass him something to look at, photo albums etc. I also play music while I work, something we both like, I waltz by him and tickle him with the duster, he is a good sport and laughs sometimes when I am in a silly mood. If you don't think of it as WORK then it can just be a light-hearted way of spending some time together. Glad you have some future job prospects. Make the most of this break and get into that housework. You should have caught up on your sleep by now...lol Sue.

I get real excited abot eating out too probably because I do most of the cooking and run out of new ideas. We had Italian food on Thursday with a group we go out with once a month and it was wonderful. Mind you we had roast chicken at home last night and that was good too. Have a happy, relaxing, soothing weekend. Hope you have some company also to make a difference to how you see life. Congratulations on the walking to and from school, just shows we can all put in that extra effort when we HAVE to. Stay well, Sue.

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.

Mary I'm sorry too that you lost your Mum. Cry all the tears you need to, we need to grieve. Then reset your life plans and paint your feelings out. Your paintings are awesome. Sue.

You've made it through the worst year so it is all roses and sunshine from here on. Well, maybe you'll have to wait till Spring for that. Congrats on passing the one year mile stone. Sue.

Hi Kim I think we all have a different aspect on life after stroke, the survivors and caregivers like me. You have nothing left to lose? But you have done a lot of regaining by the sounds of what you said in your post which I just read. Welcome to Strokenet where you will find a great bunch of supportive people. We are survivors and caregivers from all around the world. Ray and I live on the east coast of Australia, 90kms north of Sydney. And welcome to the blog community too. Reading about what other people face so bravely in their lives gives us an example of courage rare in society theses days. Sue.

Lynn I am glad Rod's return of abilities seem to be happening again. It is good when your survivor gets to another energised stage. Ray sometimes brings in a light shopping bag by draping it over his wrist and cane handle. I am not conviced it is safe but I let him do it. Sorry to hear you do have to have the op but if family rally round I am sure all will be well. Sue.w

Bill paying season here too. Sue.

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.

I agree, but then I go off to make coffee and forget to tell people too. So I am not the one to tell others what to do. Talk to you again. Sue.

:BashHead: Had a boss like that once, I just backed off a couple of days and said:"Sorry, I think something here is making ME sick too". Sometimes it seems as if all your plans fall through so just hoping this will be over for you soon. Sue. :friends:

One of my husband's cousins got "found" by his half-sister at a party. He said a woman had just come up to him and said "You X? I'm your sister." Although he likes them (she and her brother) he says he feels no kinship but keeps in touch as his parents and one brother are both deceased. Life is very strange isn't it? And the standards today which would have allowed your mother to share this information with you are not the same standards as years gone by. Enjoy rebuilding the relationship with your sister and getting to know these new relations too. We all need family. Sue.

We just went away for five days' holiday, a coach tour to a town about three hours drive from here. It is part of the biggest horse breeding area outside of Kentucky. The day tours were centred on horses but included historical homesteads and places where breeding horses for racing first started in that area and we visited the most fabulous stud full of the loveliest horses imaginable. I am not a horse rider but have been involved in the racing industry a long time ago and the sight of those brilliant creatures was like a glass of champagne for the soul. Four out of five days were pretty good. As other caregivers of wheelchair bound partners will testify nowhere apart from home is easy, the further from home the harder it is to get around. The local government area we were in seemed to have gone to no trouble to comply with the disabled persons guidelines so none of the places we visited had ramps, wider doors, proper disabled toilets etc. The motel we stayed in, at my request,did install a flexible hosed shower head but that was their only concession. I still had to haul Ray's wheelchair up steps to the dining area, moving chairs and tables out of my way as I went. If you go on holidays here you have to do a lot of that. Most establishments aren't upset by this, just a bit surprised that you would be bothered to take a disabled person on holidays with you. It's not deliberate negligence, just apathy that stops them from complying with the guidelines. So I hauled Ray through foot long grass, up muddy driveways, up sets of steps, around the backs of buildings when I couldn't get him into the front door with everyone else. As usual I cut up his food so small it was hard to see what it actually started out as. I supervised his showers, medications etc, I did all the things I usually do at home apart from cooking meals and answering the phone, but I still enjoyed the first four days. But this morning I did not check to see that he put on his incontinence "underwear" with his other clothes, the first inkling that he did not was when he went into a toilet and didn't come out for 20 minutes. Then I could see he had made some attempt to clean himself up but he was a real mess. We were in the middle of a forest at the time, not a water supply in sight so I "wrapped" him up as well as I could and got back on the bus. I cleaned him up at our next stop after requesting his suitcase from the driver. I am hoping the obvious mess didn't distress the other passengers and spoil their holiday. Who's problem is it when something goes wrong? The caregiver's, for not supervising every waking moment of her survivor's life? The survivor's, for not accepting the fact that he/she needs incontinence aids, and special equipment etc to live a life as close to the "norm" as possible? The rest of the community for not raising standards so that a person with or without a disability can enjoy the beauties of nature without discomfort and embarrassment? I know who felt it was their problem - me.

Hey Kristen, although Ray's major strokes were in 1999 I still remember how I felt walking down the corridors and feeling as if I was in a freezer with sound-proofing, I had so many conflicting thoughts I couldn't actually hear what people said without it all sounding hollow and far away. I remember the not-sleeping, not eating, not thinking about anyone or anything just the stroke, stroke, stroke. But almost seven years later we are still HERE. Hope to catch up with you soon. Sue.

H Lynn We've been away but hope to catch up with you and Rod soon. I'll try to get Ray back on one day (our time) next week. Sue.

Wow. Sounds like you really see your situation in a whole new way! Loving someone is the best thing you can do for them and caregiving is certainly a demonstration of love tough though it may be. Marriage is for better or worse so let's hope the worst part is behind you and things can only get better. Sue.

Janice - I had better read all your old bogs before you recycle them. Hope you are printing off a copy of each one so you don't lose the record of those early struggles. If it seemed dark remember you were waliking through the Valley of the Shadow of Death. And look how far you have come. Sue.

We did it, we went to Terrigal Beach, the big wheel beach chair was there, the boys put Ray in it and we went in and out of the water which was shallow at low tide and had some fun. Ray was happy to just put his feet in the sand and allow the water to splash him. It was the first time he had been in the sea since his major strokes in 1999. Of course Tori and her Dad came too and she had heaps of fun running in and out of the waves, mainly with Dad, but at one stage she said:"Girls turn" and grabbed my hand and out we went. She didn't go home till 5.30pm as her Dad and Trev had to go out for a while this afternoon and by then she was getting really tired. Time on the beach will do that to you whatever your age. If you want to see the beach, Ray, Trevor and the big wheel beach chair I've just posted two photos in the gallery. The chair is Australian design but the wheels are made in America, see www.roleez.com for other products. The chair was donated to Terrigal Surf Club by my next door neighbour's ex who works for a group called "Life without Barriers" which provides a lot of help, mainly to Downs Syndrome people and amputees to enable them to continue in sports, no doubt in America there are similar organizations. I wouldn't even know these big wheel beach chairs existed but I saw Gary in one posted in Spacie1 (Sarah's) photos in the gallery and asked my next door neighbour if he knew of such a chair and he told me there was one at Terrigal Surf Club and if I came down today while he was on patrol he would see it was out for me. So pat yourself on the back Sarah (and Steve for having this great site here). There are so many ways we can help each other and this site has certainly done a lot for me including giving Ray and I a wonderful morning at the beach today. And of course providing me with friends to tell the whole story to. I hope that you will have similar stories to tell of how being here and learning from others has helped you.

Welcome Back!!! Glad you had a good time on Mauritus, a guy I worked with came from there and he told us IT was paradise, but family was hell...lol It seems ages since we've chatted but you will be able to catch up with us all by reading our blogs and posts. Glad you survived with minor fatigue problems. And were able to do the snorkelling etc. Sue.