How long have we got ?!

[Rubylou]

Hi nonstop

Hello
I am 66. My wife is 62. She has been experiencing mild cognitive impairment for about 4 years. Symptoms have included short term memory loss, occasional mild confusion when travelling, difficulties reading, some visio-spatial difficulties, and problems with finance etc.
All fairly classic stuff, but in common with others on this forum, we have found the process of getting a firm diagnosis disappointingly slow. However, following psych tests and a lumbar puncture, she has just been definitely diagnosed with young onset Alzheimer’s and placed on Donepezil.
Obviously this is a bit of a game-changer, which we understand will inevitably worsen over time. We have a good consultant but for perhaps understandable reasons, the medical profession are reluctant to talk in terms of disease progression and life expectancy.
We would like to make the most of whatever time we have left. So we have a number of questions and would really appreciate any guidance from fellow sufferers or carers.
What is the average life expectancy? Is this from the first signs, or from official diagnosis?
What is a reasonable estimate of remaining “quality life” – let’s define that as still being able to manage day to day life, (washing/dressing/eating etc) and recognise close family?
Does the disease progress faster and more aggressively in young-onset sufferers (we have read there may be some evidence of this)?
Do any of you have experience of new-drug trials?
In many ways we are very lucky. We have a good life without any other worries apart from the obvious ones associated with this pernicious disease. We are hugely impressed with the positive attitude displayed by some of the writers on this site, in the face of greater hardships. So we want to give it our best shot, only getting hard info is not that easy, so we’d be really grateful for any guidance you can offer.

Hi nonstop! yes lots of what other have already said is so right.
My mother n law battled against Alzheimer's for around 7/8 years, it was pneumonia that she finally died from, due to the alzheimers affects on her life/body. My husbands cousin died last year after only fighting for 3 years, due to alz affecting her ability to swallow she choked.
My husband was diagnosed 18 moths ago with early onset Alzheimer's at the age of just 59. I already can't believe that this roller coaster has been going for about 2 years, but I reckon we are about a third of the way along the ride. No there is no definite timings with how long is left but, when people keep saying, oh take each day as it comes and make the most of your time etc etc I know it's meant well but flipping heck it's one of the hardest things I have had to do!
That's the biggest issue I have with this bully of a disease, if it's not enough that it's going to take our loved ones in this awful way, it keeps you guessing the whole time as to when it may just snap them up!

We have huge support from the mental health support nurses an d the consultant has been brilliant. I would love my husband to have an interest in going to a support group for younger people affected but he is a very private person and very reluctant to mix
Yes get all important things in place and settled so you can get on and do special things with your wife, memories to record, places to go and loads of photos to take!

Rubylou

 

[Irishgirl57]

First, your wife is very lucky to have you. I also have a very loving caring adoring husband. I couldn't do this journey without him. Is he perfect, ha ha absolutely not. But who is. It's been four years since my diagnosis, at first it was devastating and we didn't know what to do. No I have good days now. Learn to be flexible. Finding the new normal that's the "that's the quote.

To me, acceptance is the key. If I don't accept my condition, I find myself looking at all the things that I can't do any longer, work, Drive, read a book, act normal in social situations. But if I work on acceptance, I deal with the positive things in my life.

Many blessings to you …

 

[Nuttywal]

We have a lot in common

Hi nonstop! yes lots of what other have already said is so right.
My mother n law battled against Alzheimer's for around 7/8 years, it was pneumonia that she finally died from, due to the alzheimers affects on her life/body. My husbands cousin died last year after only fighting for 3 years, due to alz affecting her ability to swallow she choked.
My husband was diagnosed 18 moths ago with early onset Alzheimer's at the age of just 59. I already can't believe that this roller coaster has been going for about 2 years, but I reckon we are about a third of the way along the ride. No there is no definite timings with how long is left but, when people keep saying, oh take each day as it comes and make the most of your time etc etc I know it's meant well but flipping heck it's one of the hardest things I have had to do!
That's the biggest issue I have with this bully of a disease, if it's not enough that it's going to take our loved ones in this awful way, it keeps you guessing the whole time as to when it may just snap them up!

We have huge support from the mental health support nurses an d the consultant has been brilliant. I would love my husband to have an interest in going to a support group for younger people affected but he is a very private person and very reluctant to mix
Yes get all important things in place and settled so you can get on and do special things with your wife, memories to record, places to go and loads of photos to take!

Rubylou

My husband is 58 and we finally have a diagnosis. He's probably had Alzheimer's for years but our local memory clinic won't take anyone under 65 so we had to go the long route.

 

[tss502]

Hi,

My husband was diagnosed with early onset alzheimers about 15 months ago at the age of 55. He has been on donepezil since and we haven't seen much deterioration over that period. We've had experience of clinical trials and I would say this is definitely worth doing - you get to contribute to some meaningful research and the opportunity to try new drugs which may or may not help the condition. My husband is on a trial drug which is intended to increase the benefits of the donepezil and boost his cognitive function. I've no idea how he would be if he wasn't taking it so it's difficult to say definitively whether it is helping or not, but the important thing is that it gives you hope and something positive you can work towards. We signed up through the Join Dementia Research website. It's also nice for my husband because we get to go down to London once a month, he gets free coffee and sandwiches and its a change of scene. He likes visiting the clinic and chatting to the Doctors and has got on with them better than the ones in our local memory clinic. We also try and do something nice whilst we are there like having lunch or popping into a museum so he always looks forward to it.

I haven't been given any timescales for life expectancy but have read various contradictory statements about this and I think it's probably not worth worrying too much about, as others have said 'live in the moment and make the most of now'.

 

[aprilbday]

Nuttywal

That is so wrong to limit the help like that! Wow! 65! There are so many who suffer before that. My goodness. Glad he has a diagnosis finally.