Fast onset alzheimers/dementia - any experience anyone?
- Thread starter lindybox
- Start date
"Just to smell him and hold his hand would be enough for me now even though I know that would be hard I would still rather have him here with me"
Oh how those words strike home. But then I think maybe it would be selfish of me. Never a day passes without me thinking of either Dad or Aunt but nearly 5 years on from losing Dad most of my thoughts are as though he were still by my side - I remember things he taught me as I'm doing something his way, I hear his words of encouragement or caution when I am unsure. Mostly now I can continue with the task but I still have the moments when the tears flow when I just want to touch or smell him - oops there they go again...
Kriss
x
"One day at a time - the next bus could have your name on it "
Oh how those words strike home. But then I think maybe it would be selfish of me. Never a day passes without me thinking of either Dad or Aunt but nearly 5 years on from losing Dad most of my thoughts are as though he were still by my side - I remember things he taught me as I'm doing something his way, I hear his words of encouragement or caution when I am unsure. Mostly now I can continue with the task but I still have the moments when the tears flow when I just want to touch or smell him - oops there they go again...
Kriss
x
"One day at a time - the next bus could have your name on it "
These posts are striking such a chord with me. My Mum (89) has 'ordinary' dementia - Alzheimer's; has probably had it for about 4-5 years now (with good old hindsight) & her downhill progression is picking up speed now. "She is 89, you know" as everyone seems to want to tell me; I do know that this is a significant factor.
30 years ago, my father died from an inoperable brain tumour & associated seeded cancers elsewhere. He was only 52.
From diagnosis to death took only 6 months (although 'only' wasn't how it felt at the time) & I still grieve for the man we lost then.
However, then or now, I wouldn't have wished him to suffer for longer than he/we did.
Neither do I wish for Mum's "long goodbye" now to be extended for much longer;
she gets no joy, comfort or pleasure from anything I can provide, suffers constant anxiety about everything & nothing; she deserves better, not more of the same.
Only my feelings; I know others will differ, as is their choice & their right.
30 years ago, my father died from an inoperable brain tumour & associated seeded cancers elsewhere. He was only 52.
From diagnosis to death took only 6 months (although 'only' wasn't how it felt at the time) & I still grieve for the man we lost then.
However, then or now, I wouldn't have wished him to suffer for longer than he/we did.
Neither do I wish for Mum's "long goodbye" now to be extended for much longer;
she gets no joy, comfort or pleasure from anything I can provide, suffers constant anxiety about everything & nothing; she deserves better, not more of the same.
Only my feelings; I know others will differ, as is their choice & their right.
Wanting to stop the ride
Dad's had this disease for near 11yrs now...but when he did decline he always did it suddenly and shockingly...so much so that I began to liken the experience to a roller coaster....sometimes you'd be chugging along quite comfortably and then wham, wham, wham and we'd be flying downhill and feeling sick to the stomach...and then after a few months it would settle down again...we'd be on the upward climb again...this happened time and time again so that I began to never be able to relax, scared to relax because whenever I did, whenever I started to breath a sigh of relief, the terror ride would start again. Its been since September now since the last big shock..and my hands are still gripping the rails, I know its going to happen again, but I don't know when, I am hoping we've got till Christmas at least this time, the roller coaster seems to take longer and longer to reach the peak each time round. I joined this forum about 3yrs ago and at the time I wrote as my introduction that Dad was in last stage Alzheimer's which he was, but at the time I thought it wasn't long until the end...here I am 3yrs later still thinking the same and with a few more roller coaster rides gone by. This is the hardest thing about this disease in my mind, the always knowing that its a killer, that at any moment the trolley will finally come off the rails but never knowing which time that that is going to happen. It wears you out, always being on high alert...but not daring to get off high alert..because you've learnt from past experience that it is even harder to take when you weren't ready for it. Damned if you do, damned if you don't. The only good thing coming out of all this, is once I got past a certain point where I was always afraid that it might break me, I am now just getting very very strong.
Dad's had this disease for near 11yrs now...but when he did decline he always did it suddenly and shockingly...so much so that I began to liken the experience to a roller coaster....sometimes you'd be chugging along quite comfortably and then wham, wham, wham and we'd be flying downhill and feeling sick to the stomach...and then after a few months it would settle down again...we'd be on the upward climb again...this happened time and time again so that I began to never be able to relax, scared to relax because whenever I did, whenever I started to breath a sigh of relief, the terror ride would start again. Its been since September now since the last big shock..and my hands are still gripping the rails, I know its going to happen again, but I don't know when, I am hoping we've got till Christmas at least this time, the roller coaster seems to take longer and longer to reach the peak each time round. I joined this forum about 3yrs ago and at the time I wrote as my introduction that Dad was in last stage Alzheimer's which he was, but at the time I thought it wasn't long until the end...here I am 3yrs later still thinking the same and with a few more roller coaster rides gone by. This is the hardest thing about this disease in my mind, the always knowing that its a killer, that at any moment the trolley will finally come off the rails but never knowing which time that that is going to happen. It wears you out, always being on high alert...but not daring to get off high alert..because you've learnt from past experience that it is even harder to take when you weren't ready for it. Damned if you do, damned if you don't. The only good thing coming out of all this, is once I got past a certain point where I was always afraid that it might break me, I am now just getting very very strong.
Haven't been able to get a computer over the weekend.
Have read all through the emails that have come through and the most overwhelming thing for me is although we've all arrived here through alzheimers or dementia, everyones experiences have been slightly different and the level of help you get re a diagnosis is almost a matter of luck!
What I do know is that there are a lot of people out there sharing the same pain and it does help to know that I'm not the only one going through this horror story.
We are seeing a nuerologist on the 5th August, so am taking a lot of what has been said to that meeting, with some hope of getting a proper diagnosis.
Thanks to everyone for their kindness and taking the time to reply.
Have read all through the emails that have come through and the most overwhelming thing for me is although we've all arrived here through alzheimers or dementia, everyones experiences have been slightly different and the level of help you get re a diagnosis is almost a matter of luck!
What I do know is that there are a lot of people out there sharing the same pain and it does help to know that I'm not the only one going through this horror story.
We are seeing a nuerologist on the 5th August, so am taking a lot of what has been said to that meeting, with some hope of getting a proper diagnosis.
Thanks to everyone for their kindness and taking the time to reply.
Update
Just wanted to let everyone know, who kindly responded to my mailings, that my Dad died in September 2008 after dementia of only 9 months. After much fighting, I got a post mortem carried out and it turns out he died from CJD! He had a prion test quite early on that revealed nothing - so if I hadn't have asked for the post mortem, I would never have known. His consultant said that CJD would have caused death within four months..... but Dad lasted 9 months. Its a message to anyone out there who is fobbed off with 'oh its alzheimers'. It isn't always the case and the doctors do get it wrong.
Just wanted to let everyone know, who kindly responded to my mailings, that my Dad died in September 2008 after dementia of only 9 months. After much fighting, I got a post mortem carried out and it turns out he died from CJD! He had a prion test quite early on that revealed nothing - so if I hadn't have asked for the post mortem, I would never have known. His consultant said that CJD would have caused death within four months..... but Dad lasted 9 months. Its a message to anyone out there who is fobbed off with 'oh its alzheimers'. It isn't always the case and the doctors do get it wrong.
I am so sorry that your father has died. Sadly, I suppose even if they had got it right all the way though, there wouldn't have been anything that could have been done. It might have allowed you to mentally prepare yourself though.
I think that's what saddens me the most. If I'd known it was CJD I would have known there was no cure and not much time, so instead of fighting the medical profession for appointments and answers, I would have been able to make him comfortable and spend more time with him. Still, reading what some people have to go through watching their loved ones suffer dementia for many, many years, I am relieved that Dad's suffering only went on for a very short time. My heart goes out to everyone watching someone they love slip away through alzheimers. I asked for contributions at Dad's funeral to go the Alzheimer's Society as this was my biggest source of help. We raised a great deal of money which I hope will help the society in its work.
Dear Lindy
I'm sorry to learn that you lost your Dad in Sept 08.
Hindsight can be a cruel thing, showing us too late what we might have done differently or better had we known what the future held or what the timeline was.
My mum died 3rd Sept 08, so I have a good idea of how you feel (probably).
Don't look back any more, the past is fixed, there's nothing we can change there. Try to reclaim your own future & plans for it. Our parents would want it so.
Regards
I'm sorry to learn that you lost your Dad in Sept 08.
Hindsight can be a cruel thing, showing us too late what we might have done differently or better had we known what the future held or what the timeline was.
My mum died 3rd Sept 08, so I have a good idea of how you feel (probably).
Don't look back any more, the past is fixed, there's nothing we can change there. Try to reclaim your own future & plans for it. Our parents would want it so.
Regards
