swilkinson

Wow. I'm just an earth urchin. Sue.

Jean, you may be right. It was the same situation with having my mum here. I tried to get my sisiter to help (still do) but if there was serious confrontation I just backed away. If you got your brother to share care you must be made of tougher stuff than I am. Our son helps out a little. He has cooked the evening meal the last two nights, I have a summer sinus virus and feel lousy. Probably why I am seeing the negative side of life, not the positive as I mostly do. Sue.

Our daughter has been urging us to come for a visit, so I rang tonight to say that we could maybe come next Tuesday for three days but wouldn't be able to bring the wheelchair as there wouldn't be room in our friends car for luggage and the chair. She was less than enthusiastic. She pointed out how busy they are, the kids are on school holidays but have plans for the week and... I backed down as I usually do. I think they had seen us a bit over Christmas and that is probably enough for now. But I was a little disappointed. Her in-laws were down for a week before Christmas and we were last there last January. But her father-in-law is fit and can go off and do the shopping, her mother-in-law is not as fit but probably prepared the evening meals. I guess we are a lot more trouble to have for a visit. Our older son was sympathetic when I spoke to him about it but he knows we won't visit there for more than a few hours. He, his wife and daughter come to us instead, and we had Tori today. So he makes the sympathetic noises. Our son who lives with us said: "I don't know why you bother mum. You know it is too much trouble." and more of the same. I know what he says is true. We are too much trouble now. We can't be the parents and grandparents we would have been if Ray had not had the strokes. But then we probably would have been too busy with the round-the-world-trip and visits to the stockbroker. I love all my kids, I saw them all through higher education and we gave them as good a start in life as we could. It's not that I'm asking for much help. I just wanted a few days of rest in a place where the phone won't ring for me, I don't have to shop or do the major repairs if it rains. I would have looked after Ray and maybe had a bit of a reading holiday. You know how that is. I don't know why I'm bothered really. What I will probably do now is book that five day bus trip I have been thinking about. That will be much more expensive so I shall do it and think about the cost later. I think I'll find the sign a friend of mine had on the back of one of her cars: "Too busy to mind grandchildren, out spending our kids' inheritance."

Susan Sometimes we think so alike it is like we are twins. Sue.

Alana Time for Part 5? Sue.

Joy I am sure you quilts will give others much joy. I do afghan rugs too for new Mums, and for the elderly, that is what I do in winter. I sometimes see a rug I have made when I visit a nearby nursing home and know they give comfort and a feeling of homeliness to a stark and impersonal room. Keep on giving pleseure to others. Best wishes to you and Hans, and hopes for a healthy 2006. Sue.

Hey Ruthie Yours is good news. I am always glad when someone gets something back. I am sure Baltimore will be yours in Spring if you keep up the progress. Good news gives us all a boost. Sue.

Sounds like a typical domestic scene in our last winter too. Summer WILL come again for you. Sue.

I think tiredness is a big factor in apathy too. Tiredness coupled with mild depression can crush those active, go-get-em thoughts out of your head. I had viral pneumonia and sat for six weeks just breathing in and out so I know how it feels. Sue.

We went to see the physio today taking the ultrasound results with us. It was as the physio thought. Ray's left shoulder shows muscle tears and now atrophying muscles. All he could advise was a couple of exercises that he can do laying down of a morning that will hopefully allow him to keep the muscle that he has got and stop further deterioration. He also said he had taken the leg exercises as far as they could go. The fact is that Ray is back where he started from every time we go back so although he says he has done the exercises at home and sometimes he has a couple of times in the fortnight, he really hasn't done then consistently enough to make any difference. I know a lot of people can relate to this, as a caregiver and as a stroke survivor, if the motivation centre is gone the survivor is not going to do the exercises, go on the right diet, try new things etc. It take an uncommon amount of determination to get well and although I motivate Ray as much as I can by offering to do the exercises with him unless he wants to we don't do them. The physios advice was to hire a rollator for a month, take it to the shopping centre or a similar flat area ad get Ray to walk with it until he gets tired and then pick him up in the wheelchair. This might build his legs up a bit more. He said nothing is going to get him back to where he was even when he had the last stroke in May. And if he continues to walk with one foot turned in he will continue to have the falls and maybe even damage the left hip again. I know it is just what we had expected in the way of news really but each time someone mentions physio or exercise or special vitamins to stimulate the brain my little mind accepts that as a glimmer of hope and off we go, anything is worth a try. Some people strive and get so much back, maybe not 100% but a lot and some even go back to work. I don't want a miracle for Ray (well maybe I do) I just don't want any more deterioration. If he is healthy and stable and can do some walking we can go on another one of our little holidays.

Fred, you mght have to reprint it for me as I can't get it in Australia. Sue.

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

Oh dear!! Spots are no fun and so close to the wedding. Hope you come out really healthy after this Vicky. I've ordered a 2006 that will exceed all our best and finest years. For you too. Sue.

Hi Pam Had a similar day myself yesterday but persevered and finished up getting a lot done. Use you energy to clean out cupboards or some other task you hate doing. Throwing things on the ground always helps me...lol I think this is just post Christmas blues. Nothing much to excite us in life. You can always say: Bah!! Humbug!! Sue.

And we are different kinds of people from all around the world, with different experiences. We come here to share a small part of our lives with each other. The problem we have in common is strokes and the effects and deficits.So that is what we all can share. How we deal with that. It is good to feel supported by people who know what you are on about. Happy days, myworld, and good health too throughout the year. Sue.

Ray went into chat for the first time today. Thanks to Bonnie for coming in specially and to Sudz and Gary Gray who also interacted with Ray. He as so nervous, he hasn't yet visualised that he is chatting to people so far apart from each other and so far removed from us. I hope he will get the hang of it and enjoy the expereince. So thanks to all who will help him in this way. Sue.

Thanks friends for the posts. I do try to accept but sometimes it is a battle to come to terms with changes and challenges and I do feel angry, upset, uncomfortable and just plain MAD with life. Not necessarily with Ray but with him sometimes too. For carers like me whose loved one has had multiple strokes it seems as if you just reach acceptance and the ground opens up under your feet once more. I want to be able to plan ahead just a little way, do some more travelling, dine out with friends, have some 50+ FUN!!! But it isn't easy to do given Ray's limitations. I guess I'll just see what life brings. Cheers, Sue.

Pam It's good the bill paying days are the exception not the rule!! We have these marathons too, but it is good to go home, put the feet up, sip the cup of coffee and say:"I achieved something today." And yes, you are better off now. Sue.

Hope "having the whole family together" was al you hoped it would be. We did too and it was a wonderful day. Sue.

Susan Ray's emotions are "locked in" so he doesn't cry and he hardly ever laughs, all he manages is a smile. Maybe Rolly's tears were the equivalent of Ray's angry outburst just before Christmas and just signified that he was tired, stressed and overwhelmed by all the rush and excitement. Hang in there my friend. Sue.

Vix There are so many memories attached to Christmas, a word can trigger an emotional response for me, a mention of past friends, family, or even the future. It may be a happy memory, even a funny one but at the end of a long day can bring me to tears. Glad you have Greg and will think of you planning that lovely wedding you are going to have.

Yes Phyllis I know a nursing home is not the answer. I may get more help around February when my social worker gets her act together. The problem of Ray's deteriorating mind is that his uncertainty is making him more irratable, less co-operative so slows everything down. He also like to be my number one priority. I think I'll have to change my signature to: Not retired, just tired.

Phyllis I guess us older folk are a pain to buy for. Ray was surprised to get a set of towels (I think they were meant for me) but appreciated a DVD of old comedy movies. Packing away all but the decorations today, they come down on 6th January (Twelfth Night) in our household, if they haven't fallen down by then LOL. Ask for what you want next year, give out the list and see how your nearest and dearest react to that. Sue.

Nice grievance. Sue.

I think Chritsmas is hard for a lot of us because we have a "Brady Bunch" outlook on it. Our first Christmas after Ray's strokes in 1999 was a difficult one Dad had cancer, Mum had dementia, Ray was only just starting to be mobile. But it turned out to be the last one for my Dad so I was glad I made the effort. Just enjoy the day for what it is. It can be a time when we give way to the memories of the past, but we need to enjoy the present too. None of us know just what is around the corner, good or bad so I try to do my best with each new day. Sue.