How long have we got ?!

[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.

 

[jaymor]

Hi Nonstop and welcome to TP.

I don't think we can answer your questions for you. Everyone who lives with dementia progresses differently. We have a friend who has lived with dementia over 20 years, still does crosswords, walks into town and can hold a conversation. He was in his 40s when he was diagnosed. My husband was 62 when he was diagnosed and was 7 years post diagnosis when he needed to go into care because of his complex needs.

Just take each day as it comes, try not to think too far ahead. Enjoy all the things you can do, make sure all the legal things are in place, wiils and LPA so when the time comes that you need to take over some things that your wife can no longer manage, like her finances. Look into what help you may need so again when you need it the information is at your fingertips. But for now just carry on as you have and enjoy doing what you like to do.

When you have questions or need advice just ask, there is a lot of experience of all the problems you may come across but you will have an army of helpers ready and willing to support you.

Take care,

Jay

 

[malc]

my wife showed symptoms at 38,now 44,scored 13 out of 30 a drop of 6 points since april,liked a scared child when it's dark,but for the last 6 years i've treated her normally,enjoyed the time we've had together,made the new normal the normal of the moment and love her with all my heart,i guess what i'm saying is don't skip to the last page of the book because you need to enjoy the rest of it first,yes it will always be there like a black cloud hanging over your head,but ignore it the best you can and enjoy life.

 

[WILLIAMR]

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.

Hello Nonstop

I don't know the answer to your question.
A lady went in to the care home my step mother was in in 2006 and she was only supposed to live for a year and was certainly alive still about a month ago when I last had contact.
Taking my step mother as an example the nurse thought about 6 months but she only lasted a week. She died from a blocked intestine.
That said the doctor said if it had been me or the son with that problem surgery would have been performed with a good chance of success but in her case it was decided it was best not to intervene.
We are both in our early 60's.

William

 

[Izzy]

I agree with others. Take one day at a time and try to live life to the full.

My husband was diagnosed with Alzheimer's 13 years ago. His dementia is fairly far advanced now but we're lucky enough to still get out and about. I gave to adjust my plans with every new downturn but I'm used to that now.

We were involved in drugs trials at the Glasgow Memory clinic. It was a vaccine against Alzheimer's. The drugs company pulled the world wide trial as they weren't getting the results they had hoped for. We found out later that my husband had been on the active drug rather than the placebo. It was a disappointment. His scores are too low now to be considered for a trial.

It's early days for your wife. Perhaps you need to see if the Donepezil helps her. It did seem to slow things down for my husband. We asked the advice of our own memory clinic doctor before going ahead with the trial.

 

[stanleypj]

I agree with others who have posted that these questions cannot be answered (except perhaps the the last one).

I've come to the conclusion that this is one situation where it's definitely better to travel - hopefully, if you can - than to arrive. In fact I have absolutely no wish to know exactly what lies in store for us, or the likely date of my wife's death. I've found so far that it's possible, if sometimes very painful, to keep adjusting to each change as it occurs and even to find a small degree of satisfaction in the solving of some problems along the way.

For what it's worth, my wife was referred to a memory clinic in 2000 at the age of 51 and not diagnosed until late 2011.

I can look back and say for sure that I'm glad we had those years without a diagnosis, even though they were not easy, by any means.

My wife still likes and appreciates company, in her own way. She can still walk and get up and down stairs. She still enjoys music though not to the same extent that she did. We still travel and meet friends and family for meals out. She is mostly content.

Oh, and she still has a wonderful smile which everyone who knows her, and some who don't, comment on.

I know we're lucky.. My heart goes out to all those on TP who are dealing with so much more.

But we're not that unusual.

 

[JayGun]

God, no one tells you anything do they?

I got all my hard info from here at first, and now I read everything I can get my hands on.

Our consultant told me last week that 12 years from diagnosis is a good rule of thumb. She told me categorically that my MIL will not live to be 100. (She is soon to be 84, was diagnosed about two and a half years ago, but stopped being able to cook a roast dinner around five years ago, so we're pretty sure she's had it at least that long) I think she probably will live past 100, almost all of her female relatives have, and many of them had dementia, but were not diagnosed. When the consultant told me this rule of thumb I was arguing that the women in my husband's family are very long lived, so MIL will have to live a long time with this disease and should get the best chance drugs-wise now, to maintain where she is at for as long as possible. From everything I've read though, it's as long as a piece of string.

Everyone else is right though, live in the now, there's really no way to tell how an individual will progress.

From our situation, MIL has deteriorated very little from the point of diagnosis. (She's on Donepezil 10mg) Her MMSE test scores are a little variable (17-22) depending on her level of agitation and whether or not she likes the person asking the questions. (I also think the 22 was with generous marking. When she was asked to write a sentence she wrote "thank you." ) She is still well able to feed and dress herself etc. ok so she mainly eats cake, but it's still food, right? She still recognises everybody in person, but occasionally has trouble recognising voices on the phone. She has lost the plot with Eastenders since Christmas because there have been a lot of new and returning youngish male characters and she can't tell them apart, but this is mainly because she is not in the least bit interested in the youngish male characters.

I hope this gives you some idea about one way in which things can progress.

Keep posting and letting us know how you're getting on.

Best of luck to you both. xx

 

[stanleypj]

God, no one tells you anything do they?

I got all my hard info from here at first, and now I read everything I can get my hands on.

Our consultant told me last week that 12 years from diagnosis is a good rule of thumb. She told me categorically that my MIL will not live to be 100. (She is soon to be 84, was diagnosed about two and a half years ago, but stopped being able to cook a roast dinner around five years ago, so we're pretty sure she's had it at least that long) I think she probably will live past 100, almost all of her female relatives have, and many of them had dementia, but were not diagnosed. When the consultant told me this rule of thumb I was arguing that the women in my husband's family are very long lived, so MIL will have to live a long time with this disease and should get the best chance drugs-wise now, to maintain where she is at for as long as possible. From everything I've read though, it's as long as a piece of string.

Everyone else is right though, live in the now, there's really no way to tell how an individual will progress.

From our situation, MIL has deteriorated very little from the point of diagnosis. (She's on Donepezil 10mg) Her MMSE test scores are a little variable (17-22) depending on her level of agitation and whether or not she likes the person asking the questions. (I also think the 22 was with generous marking. When she was asked to write a sentence she wrote "thank you." ) She is still well able to feed and dress herself etc. ok so she mainly eats cake, but it's still food, right? She still recognises everybody in person, but occasionally has trouble recognising voices on the phone. She has lost the plot with Eastenders since Christmas because there have been a lot of new and returning youngish male characters and she can't tell them apart, but this is mainly because she is not in the least bit interested in the youngish male characters.

I hope this gives you some idea about one way in which things can progress.

Keep posting and letting us know how you're getting on.

Best of luck to you both. xx

So you can get a categorical answer. And it's just as likely to be wrong as right.

 

[Nonstop]

Thank you all

I am so grateful for all your helpful and very prompt replies. I had not expected to hear much at all, but instead I have received a cornucopia of views and advice. Just wonderful, so supportive and reassuring. I will reply to you all individually but just wanted to explain one thing, that perhaps I left out of the first message. Like Malc, I love my wife with all my heart and am totally committed to sharing our life's journey whatever that may be and wherever it may lead us. So all points about living in the moment are absolutely accepted. But I have quite a number of work/business problems to sort out and/or plan for in the coming months and years, and that is what drove my questions. Thanks again and very best wishes to you all

 

[Izzy]

Don't feel you have to reply to everyone! I'm sure not one of us is in doubt of your love and commitment to your wife. I don't think you'd be on this forum if that were not the case. Take care.

 

[Nonstop]

Thanks Jaymor

Hi Nonstop and welcome to TP.

I don't think we can answer your questions for you. Everyone who lives with dementia progresses differently. We have a friend who has lived with dementia over 20 years, still does crosswords, walks into town and can hold a conversation. He was in his 40s when he was diagnosed. My husband was 62 when he was diagnosed and was 7 years post diagnosis when he needed to go into care because of his complex needs.

Just take each day as it comes, try not to think too far ahead. Enjoy all the things you can do, make sure all the legal things are in place, wiils and LPA so when the time comes that you need to take over some things that your wife can no longer manage, like her finances. Look into what help you may need so again when you need it the information is at your fingertips. But for now just carry on as you have and enjoy doing what you like to do.

When you have questions or need advice just ask, there is a lot of experience of all the problems you may come across but you will have an army of helpers ready and willing to support you.

Take care,

Jay

Thanks Jay for your very sensible comments, and details of your personal experience. Every little helps. Wow 20 years and still doing crosswords. Phenomenal! The legals, wills and LPAs are all sorted. I'm not too sure of the custom here for submitting replies. So correct me if I'm off piste! Best wishes. Nonstop

 

[stanleypj]

Glad you find the responses useful.

However things progress, it's possible that you may find that you come to see your work/business problems in a different light. And you may also find that your experiences of dealing with all the uncertainties of the business world come in handy.

 

[Nonstop]

Yes but ....

Don't feel you have to reply to everyone! I'm sure not one of us is in doubt of your love and commitment to your wife. I don't think you'd be on this forum if that were not the case. Take care.

.... it's good to be in touch, personally, even if only for the first time. So thanks Izzy for the insights. Interesting comments re the GLA drugs trial. Can you remember the name of the drug? Beautiful name Izzy, which you share with my youngest daughter, just finished an MSc in Aberdeen, and about to start real work in that town. Best wishes Nonstop

 

[Nonstop]

Good Point

Glad you find the responses useful.

However things progress, it's possible that you may find that you come to see your work/business problems in a different light. And you may also find that your experiences of dealing with all the uncertainties of the business world come in handy.

Good point Stanley. I have been seeing things in a different light for a while now, and am already making plans to wind down on various fronts. Best wishes Nonstop

 

[Nonstop]

Hi William

Thanks for your helpful comments. Sorry about your stepmother. Hope all goes well with you. Best wishes Nonstop

 

[Nonstop]

Thanks Malc

my wife showed symptoms at 38,now 44,scored 13 out of 30 a drop of 6 points since april,liked a scared child when it's dark,but for the last 6 years i've treated her normally,enjoyed the time we've had together,made the new normal the normal of the moment and love her with all my heart,i guess what i'm saying is don't skip to the last page of the book because you need to enjoy the rest of it first,yes it will always be there like a black cloud hanging over your head,but ignore it the best you can and enjoy life.

Malc, I was really touched by your comments and echo your sentiments. It's really encouraging to hear you've had the blessing of good times together over the last 6 years. Long may the new normal continue. Best wishes Nonstop

 

[Izzy]

Ah! A namesake! We lived in Aberdeen for 10 years and I worked there for 18. I do like that city. I'm off out with Bill but I'll try to find the name of the drug later today.


Sent from my iPhone using Talking Point mobile app

 

[Izzy]

You know I've just had a thought! The drug didn't have a name. Just a reference number. It seemed they wouldn't name it until the trial was further down the line.


Sent from my iPhone using Talking Point mobile app

 

[Lets_Stop_Time]

A question that bothers me to

My mil is 62. She's displayed signs in my opinion since 2010, so for at least 5 years. It's been a fast progression I think she stopped being able to cook/do laundry/clean etc say 2-3 years ago. From then on things happened in steps of worsening.
I feel it's due to the bad care she received from the family member living with her. (As in being locked alone in the house for like 9 hours a day, medication not monitored close enough, no stimulation, bad diet).
So when she started to lose bladder control and go wandering this year, unable to clean/shower/wash hair I felt she needed us to step in and get her the care she deserved and needed.
Her husband is no longer earth side otherwise our story would be different, so we found a lovely care home who are very good with dementia/Alzheimer's.
She's been there for a few months. I can't fault them but the progression still seems so fast.
She no longer has an attention span, rambles, knows some familiar faces but only 1 name, may randomly say our names but it's so rare. She can still feed herself with a fork and using her hands so that's something.
It's mixed vascular and early Alzheimer's for us. Maybe that's a factor of speed of it all. If we continue at this rate who knows it feels like a small expectancy but nobody will answer us when we ask.
So 5 years to get to the point of needing 24/7 care in a home. Unable to care for self at all.

We need to sell her house to afford the continuing carehome fees. So it plays on my mind what value we will get = years left affording care in the home we have chosen.
Heartbreaking.

 

[Kevinl]

How long is a piece of string? My wife couldn't get 2 buses home from work at 50 and had to give up work. Twelve years later we're still here, I had to give up work a year or so ago and the Christmas day plan is curry on our narrowboat, some people go downhill quicker than others. As said just take it day by day.
K