swilkinson

Kim Sorry to hear that life is tough for you right now. I know that "Oh. Not another problem" feeling well. The housework? Organise, do the minimum. Pack away dust catchers (or ignore the dust). Ray and I are not as "houseproud" as we used to be. I need to rest to be a caregiver when it counts. Sue.

I added to this to bring it back on view. The expressions of how other survivors and caregivers feel about Christmas have been some of my feelings too over the last six years. I am one of the fortunate ones as we will have children and grandchildren to share with. But like Jean, my Dad as ill Christmas 1999 and died Jan 2, 2000 so Christmas has some bitter sweet memories for me too. And Mum won't be coming home this year as she is too confused in company. Just wishing you all the best as you continue to build some of the really worthwhile things back into your lives. And if you can't "Be of good cheer" this year, well there is always next year. Sue.

Ray 'gives up" from time to time. I try to motivate him out of it but it is something he has to do himself. With Chris's lethargy, is there low oxygen in his blood? Is his skin clammy? Did they try him on oxygen? Of course sometimes it's viral or swallowing problems may cause aspiration and a low grade fever. Unfortunately not everything shows up in the tests. Don't think of the rehab a ONLY one week, think of it as SEVEN days. And tell him it is like a shot of rocket fuel, compact but powerful. We'll be praying for you both. Sue.

I used to love the merchandisers on Thursdays at my local shopping centre. Now it has gone all "yuppie" and the merchandisers are no longer there so no free snacks for Ray or me. I have to save the shopper dockets for half-price coffee and cookies instead. Happy demonstrating, Sue.

I guess the same applies whether you have had a stroke or not. Some days are good, some days not so good. Hope tomorrow is a fantastic day, one for the book!! Sue.

All the caregivers are with you on the rollercoaster ride. You do get used to the stop-start progress. No-one climbs a mountain all at once and so the survivors, each with their own mountain climb ahead of them, surge and sleep, progress and pause for a while. I wish I could tell you it all comes out well in the end. But for Ray and me,our lives are still on that same plain, move forward, move back a little.In between, when the plateau arrives, make as many daytrips, nights out wuith family and friends, movie nights, whatever makes you feel "normal" and take full advantage of the good times. Then when the setback comes it is minor and you have good memories to smile over and enjoy. Keep on striving for that win-win, but time out to relax is important too. For both of you. Sue.

Karen I found this board when I had the same feeling after my husband Ray had his fifth stroke You get through one day at a time. You accompany your survivor/partner on their journey and if you and you take some time out for yourself when and if you can. We are all caregivers and survivors, taking a serious experience as lightly as we can. I just found a site full of fish cartoons and had the biggest laugh. It is best if you can keep your sense of humour going. Keep posting here, start a blog to blow of steam or just record daily events in a book. You need to see that inch by inch improvement until it is obvious to you and to anyone else that there is real improvement. We will support you in any way we can. Keep hope alive. Sue.

Thanks all. I see it as three fold. Ray likes to please the nurses etc, to be a "good boy" so if they say :"can you?" he says:"Yes" meaning he's willing, not that it is achievable. Included in this is the thought that somehow this is a game that you need so many "yes" scores to win. This was really obvious during his three months rehab originally. Ray has trouble formulating speech more now (dementia?) so he uses easy answers instead of long explanations. This leaves the health professional without some of the information they need to do the assessment. Usually I let him answer and then fill in the gaps. But I was busy with Tori. The system we have means those who complain the most get the most attention, rehab etc. So easy-going guys like Ray get very little. The physio may have overlooked that if she had asked the right questions but he was sitting, gently smiling and saying"I'm fine." so I guess that is the end of that. If you ask the wrong questions and get the wrong answers you, make the wrong decisions.We've all seen that happen in many aspects of our health systems haven't we?

Glad to hear today was not "one of those days". Ray is quiet, not abusive or angry, but passive and sometimes obstinate and unco-operative. Today was "one of those days" for us. But tomorrow he will wake up sunny faced and expect me to be the same. This memory loss is a mixed blessing. Keep your spirits up and hugs for you and Rolly Sue.

Kim Sue.

Amen, amen, amen to that. The small child image is good for when we feel weak and frail and just plain tired. Mary, go gently, this is not a race, there is no time limit on what you do. Thoughts are like the seeds we collect, we can grow new ideas from them. And the renewal of our minds is as important as the renewal of our bodies. I have days when I feel the weight of the world and like you know I do not have to carry it alone. God bless. Sue.

There are bad days, bad months and bad years. Hope yours is just a bad day. Having young kids and elderly parents is a combination guaranteed to tire you out. Can't help with the barn falling down, bits here fall off and I curse that my lovely handyman/carpenter had a series of strokes and can't help me now. Life goes haywire sometimes so an occassional rant or pity party does no harm, so hope you smile comes back soon. Sue.

I used to like hectic, and a busy schedule as you do. Now I lie peace and quiet and things happening at a pace Ray can handle. Look forward to a photo of you in the tie-dye Tee shirts. Sue.

"Till death do us part." Death of what? A dear friend of mine had a brother-in-law who divorced his long-suffering wife, left his three teenagers and married his secretary. Five years later he had a stroke. After SIX days his new wife saw the doctor over seeing his case. "Make some arrangements," she said. "I haven't time to look after a hopeless invalid." Pam, some things are over before anything major happens, just hanging together by a thread, and takes very little to break them. We don't have the wisdom to answer the "why me" questions except to point out that life is very unfair sometimes. Sue.

Bonnie, I can SO relate to just throwing on old clothes when you have the BLUES. Add a smear of lipstick for me too. Good sign that I am not at my best. I'm glad you are feeling better. You have had a lot happen in your life and have not allowed a lot of time to reflect on it. Like me you just keep busy. Most of us carry unresolved grief and that fog you look through sure stops the sun from shining on your life. Sue.

Susan You sound like me a few years back:"Of course I am making a mess of it, it isn't my job anyhow." These days I realise i is all my job, some I just do better than others. Ray was the driver, mechanic, builder, fixer in our family, I was part-time worker, homemaker, mother ,volunteer. As I took over more of his jobs I did less of mine. It is hard to find a balance but with a sense of humour and not too high an expectation you can still live together fine.

Or come to Australia and spend six months in what looks like being a red hot summer. Sue.

Hi Ruth Another achievement. you are doing well. I fell off the scales once but in the middle of main street in town when the big scales used to be in front of the pharmacies. I blamed slippery shoes not the shock of seeing what I weighed!! Keep up the progress we'll all be cheering you on. Sue.

Isn't it great to get away, even for a couple of days. Ray and I used to love a weekend of driving ( he was our driver) and doing the tourist thing. I need to try to do that once in a while. Sue.

A message in a bottle with a treasure map, a mermaid with a sore tail, a box of pirate gold. The possibilities for walking on a beach after a big storm are endless. Get a pile of books in, Phyllis and a stack of candles and you'll say: "What storm?"

Pam, I am one of those people who are happier doing something, I guess it makes me feel useful. I like to be prepared for most eventualities. I know I am not good at relaxing and letting it all flow although I do tell myself I should. We are who we are. Thank goodness some people still love us that way! Sue.

It's always good to make a new friend or re-acquaint yourself with an old one. At the worst you'll just re-hash old times. But sometimes it can be a great experience and somehow connect you back to the girl you once were. Sue

Bonnie, sometimes us "strong" women do too much and the pressure crushes us. I too would like a quieter life. It sometimes starts with the word "NO". Susan, Ray sleeps more when he is overwhelmed. I find if I say 'nothing much doing today so you can relax' he'll stay up later. We all need some time to daydream and reformulate. Taking it shouldn't make you fell guilty.

The crying room is a great idea, we had a man in a wheelchair who used the crying room at one of the churches I used to go to. His wife even left a thermos of coffee in with him. She sat with her friends in the congregation but went in to him if he needed her. Great you went visiting, isn't it good to do something you used to do every now and again.? And good friends do understand and appreciate short visits. Hope Hans continues to improve and the sun shines on your lives once again. Sue.n