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medical blahs


swilkinson

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I am so sick of taking Ray to appointments. I have been doing it for seven years now. At first after the 1999 strokes it was months of driving 35 minutes away a couple of days a week for physiotherapy, speech therapy, occupational therapy, the appointments were no necessarily consecutive so we would be away most of the day. Then there were doctors' appointments, specialists' appointments, MRIs etc. Then it was general check-ups, xrays etc to determine if he could have physio on certain areas so we have a stack of xrays of various kinds.

 

Add in all the appointments needed to get onto Social Security, to tie up all the loose ends created by both our retirements etc. At this stage we had my parents living with me to, so Dad had to go to radiation treatment for his cancer and Mum to doctors for various reasons. When Dad fell and broke his arm I did have an aide take him to the Cancer Clinic three times a week so I only had to take him twice a week,that was a big help. Sadly Dad died in early January 2000 but Mum was still living with us so for a lot of the appointments I had to take care not to lose her while trying to deal with what was happening to Ray.

 

When Ray fell and broke his left hip in August 2000 we went back to physio, back to specialists, back to wheeling him everywhere in the wheelchair. A caregiver's back is very vulnerable, both from holding on to the survivor when they are wobbly and hauling them up steps to unsuitably placed doctors' offices etc. A wheelchair is not always easy to take in and out of the car. Luckily I had a van so the wheelchair could be loaded in the side or in the back, if I could find the right parking spaces.

 

The next stroke in 2001 sent us back around the same doctors, specialists etc. But this time there was a community based team of therapists who mostly came to our home so I wasn't forced to take the 35 minute drive too often. With Mum still living with us and her increasing confusion due to her Alzheimers I am afraid I would have refused to go with Ray and have to find alternate means of him getting around. Luckily having someone come to the home instead was an ideal solution.

 

Mum went into care in late 2002 so we were free to travel a little, we had some weekends away and a couple of longer coach tours, Ray seemed to be doing great and coping quite well. The walking with the cane increased, he could walk maybe a hundred yards without too much difficulty, not fast but with me by his side at last we were able to leave the wheelchair in the car more and more. At last we had some time away from doctors and the medical merry-go-round. It was so good to be free of that. I can understand why survivors want to be free of therapy for a while. Believe me, the caregivers do too!

 

2004 was a busy year for us. It was probably the closest we ever got to doing what other retirees do, a little travel, a few excursions to more distant parts of our state. There were friends calling on us again too. Some of them had stayed with us before Ray's strokes, then been afraid to "add to our burden" by staying with us while Mum was with us. I can understand that, it is difficult to carry on a conversation while Mum poured tea in the sugar bowl instead of her cup, or wandered off up the road while I was showing someone my potplants in the back garden.

 

We have some new things to do , like minding our grandchildren and for a while we had some new hobbies, like learning lawn bowls and I started the Craft group at church and taught Scripture in schools again. Ray had a conversation on the phone with friends in those days too, I don't remember when that stopped. It was probably before the stroke in 2005. Perhaps as it got further in time from when he had worked or been active the memories started to fade and there got less to talk about. Maybe the dementia started around the end of 2004. It would seem like that looking back.

 

In May 2005 he had the fifth stroke. Definitely he came out of that with decreased confidence, much less ability to act independently, less will to walk. The recovery from that stroke was much less than previous strokes, in fact the only thing he did recover was his ability to sit up unaided which he lost for a while. His walking eventually got back to being able to walk yards, but not the hundred yards he had been able to walk. Swallowing difficulties, falls, increasing incontinence have taken away some of the progress he would have made.

 

It has been downhill from there. Not fast, some people wouldn't even notice, but I see it, the growing list of inabilities. Ray "can't do" so many things now. Age is a factor in that and diabetes too. I would say to others - this is not your future, it is just our story so far. You do not have the same combination of factors against you that Ray does so don't put yourself in his shoes. And it is not all bad news. Ray's life expectancy after the second and third strokes was not long, but it has been seven years since then.

 

Today we went for Ray to have the urinary tract ultrasound, on Friday he has more blood tests. Life goes on. The medical blahs continue to take their toll. But as someone pointed out to me recently, at least we are able to complain about this, in some countries health care is unobtainable and what Ray and others here have experienced would not exist. Within a few weeks of a stroke most survivors die. We live in the lucky position of being able to complain that we go to the doctor too much!! Many people would love to have that problem.

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Sue, you said, "Within a few weeks of a stroke most survivors die." But that not true world wide. It might be where you're at but I just looked at the article in the Classics forum on stroke statistics and it says 22% or men and 25% of women who've had strokes die within the first year and 25% of those who live have another stroke within five years. There are other stastics there and if anyone hasn't seen the post, it's a good one.

 

But I hear what you're saying about always having so many medical related appointments. I've been on that rat race for over 11 years now between dad and Don and it gets tiring/boring/frstrating to say the least. Glad you are starting a few new things in your life, too, that aren't stroke related.

 

Jean

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Jean, in countries without the medical facilities we in the western or "first world" countries have most people do still die not that long after a stroke, though I guess those who have good family care last the longest.

 

When I was a girl my next door neighbour had a stroke and took to his bed (against medical advice) and died 18 months later, probably of inactivity. A lot of stroke survivors were wheelchair bound before the excellent rehabilitation we take for granted these days became availabe outside of major city hospitals.

 

Think back to you own childhood and see if you can remember relatives or family friends who died of what we today would consider a minor complaint. And think of the kids who had polio, or grandmothers who were bed-ridden with "bad hearts".

 

Makes you count your blessings I guess.

 

Sue.

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Sue:

 

I agree with you about people in 3rd world country won't last longer after their stroke, I m planning to make living will that I don't want to be on any artifacial support if I get another stroke(I hope not), I want my family to remember me without me being burden on them. when my dad had alzeimers, I had wished many times that he should just die. since it was increasing difficult for mom to handle incontinence & carrying dead weight around, but sometime we all ares helpless we don't have any control over our entry&exit from this world, and all around us has to suffer with us

 

 

 

Asha

 

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We went and picked up the ultrasounds today, and will take them to the doctor next week along with the results of the blood tests Ray is to have tomorrow and see where the doctor thinks we should go from there.

 

I am beginning to think stroke, diabetes and dementia is going to be a hard combination to accomodate in our lives. I am not looking cheerfully at the future at the moment. It is a bit of a downer to constantly be reminded that things are going to get worse not better.

 

We only have to live one day at a time though so I will do my best to spend each day with Ray as cheerfully as I can manage.

 

Thanks to all who keep us in their thoughts, I know a few of you do, so thanks, I do appreciate it.

 

Sue.

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Sue,

 

You ARE in my thoughts, and I would love to be able to do more to ease the pain you are in.

 

You are a very special person and deserve the best of things in life.

 

Kristen

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