Life expectancy

[Marylil52]

Again, these are just my own personal experiences. But a few weeks after John's funeral, I had a foot operation that kept me at home for another 6 weeks or so, apart from the few kind friends who collected me, crutches and all, and took me out for a coffee.

So I used this time to go through the dozens of photo albums I had, at least one for each year since 1966 when I met John, and had a good sort out. I managed to condense the first 30-ish years to half a dozen new albums, and I found this terribly cathartic. I laughed, I cried, and looking at John, pre AD, I was able, to some extent, to put the AD years into a compartment in my mind, never to be forgotten, but not to be remembered as "bad" years.

I bawled my eyes out when I realised I'd never have a birthday card from John again, but each year, I've always put the family cards in a carrier bag, labelled the bag, and put it away. Again, it was cathartic to sort these out, and I now have nice neat coloured folders with birthday cards from John, Christmas cards, Anniversary, Valentines, miscellaneous, and it was wonderful to look through these and read his lovely messages.

In April, I joined the Citizens Advice Bureau, as a volunteer "form filler", a couple of times a week, and I'm now doing this in the Parish Office at our local church as well. Doing this work has helped me enormously - but of course, it's no substitute for the love and companionship that John and I once had. I've joined a Community Choir, I've done my best to tend the garden, I take the dog out, I never turn down the chance of lunch or coffee with a friend.

We all find our own level of coping, and it's damned hard not to feel sometimes that you're drowning in self pity. Unless you've cared for someone with AD, nobody understands that you can't pop out to post a letter. I couldn't even have a wee without having to take John to the loo with me!

There's no easy way of coping, unless you're blessed with a massive support network of family and friends, and it's nigh impossible not to feel the teeniest bit of resentment. TP is the one place where you can get everything off your chest, because everyone understands what you're going through. Keep posting sweetie. xxx

Dear Esmeralda, Scarlett and Pamann

Your replies have lifted my spirits. Thank you. Have been reading other threads and am amazed by the courage, generosity and fortitude of the writers. And deeply comforting to know I'm not alone. Wish I'd found this earlier - but so much better late than not at all.

Onwards...

 

[Casbow]

Scarlett123

And the answer is ............................. nobody knows. John was diagnosed in early 2003, though he had symptoms for a couple of years prior to this, and died late December last year, so 12 years from diagnosis. He had Multiple Systems Atrophy, which meant as well as brain cells atrophying or dying, other organs did as well. One kidney simply disappeared a few years ago, and he also had COPD, Pulmonary Fibrosis, a replacement knee and back troubles.

Following a heart attack, he was then also diagnosed with Vascular Dementia, and I had a concertina file, with sections for each illness, and the various medical letters and appointments. When he went into the Care Home, he was the youngest resident, at 75, with the majority of the others in their 80s and 90s. He died 2 days before his 76th birthday - still the youngest resident.

He was not typical, because there is no such thing as a typical "patient". Tony writes on here with clarity and eloquence. John couldn't even write his own name. Some people with AD reach a plateau, like we did, after about 5 years, when he didn't get any worse, things stayed the same for a couple of years, and we were able to do things together, and I could leave him at home for a few hours, without any worries. Then we reached another stage, and I could no longer leave him.

My arthritis also got worse, and my blood pressure went through the roof. Like a lot of carers, I ignored my own health, because there was only me to be a carer. When I had an operation earlier this year, I doubled up on the blood pressure tablets for a few days to bring it down to 160, over something, the upper limit at which my op could go ahead.

Amazingly, this week my GP announced it was down to 123 over 87, and she said she often finds this with patients, following bereavement, where they have been carers. John had 3 UTIs, one after the other, and the last one proved fatal, but he'd suffered long enough, and I was relieved that his battle, and mine, was now over.

So sorry for the difficult time you have suffered. I wish you peace and hopefully a new life even if a sad one to get over the past.

 

[PalSal]

????

My OH has been asked to take all the tests which he originally did for the Memory Klinic Diagnostic center here in Basel. Because he is atypical for Early OnSet Alzheimers. He is now 62 and in many ways doing very well 12 years after diagnosis. We were told in the beginning that Early On Set is more aggressive leading to earlier death, although no one can say for sure the perimeters of this horrible affliction. If these tests help our children we are happy. But although my husband is still doing many things for himself, there has been a huge loss at many levels. But he can still enjoy many things in his life, just not in the same way he did in the past. I agree with what others have said it is best to just try to take things one day and a time....and try not to get too frustrated or sad as the carer.