Just diagnosed (young onset Alz) wife of 51

glennwell71

New member
Mar 27, 2022
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Hi everyone - checking in for the first time as my wife, Helen, was finally diagnosed with young onset Alzheimer's last week, after symptoms that have been concerning us for between 3 and 5 years (esp last 3 years with visuospatial and planning issues). Helen is 51, I am 50 and we have two teenage girls 18, 15. I feel a sense of relief myself after years of not knowing (and Helen and others in denial), and now have begun getting the help/support in place that Helen so obviously needs.
 

Izzy

Volunteer Moderator
Aug 31, 2003
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Dundee
Welcome to the forum @glennwell71.

I’m so sorry to read about your wife. Such a young age to be facing thIs. There’s an Alzheimer’s Society link about young onset. You might find it helpful -

 

glennwell71

New member
Mar 27, 2022
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Is there any good info on finances, esp what should be done asap re current/joint accounts, etc.
And how to find a decent financial advisor?
(We have a LPA in place already and have applied for a PIP)
 

Izzy

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Aug 31, 2003
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There is some information in Chapter 4 of the Dementia Guide. You can download it here -


This is by the NHS -

 

Pork Pie lady

Registered User
Mar 16, 2013
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Anglia
I would strongly advise writing/updating your will and your wife's if she is still of sound mind to do so. In your will you should make provision for who you would like to care for your children or at least the youngest if you become unable to do so for any reason.

While it may not be appropriate for the girls to be making decisions about your wife's care, it is important that they are kept informed and encouraged to give their opinions at a level suited to their ability to understand and emotional resilience.

It would be helpful to consider if there is a trustworthy adult female who may be able to support the girls with things they may not be comfortable talking to their dad about if they haven't already got someone. It may not be needed yet but probably will be in the future.

I hope you all find the support you need.
 

Cazcaz

Registered User
Apr 3, 2021
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Is there any good info on finances, esp what should be done asap re current/joint accounts, etc.
And how to find a decent financial advisor?
(We have a LPA in place already and have applied for a PIP)
You say you have A (one) LPA in place. I hope you have 2. Health and finance Are two separate LPAs.
 

glennwell71

New member
Mar 27, 2022
8
0
I would strongly advise writing/updating your will and your wife's if she is still of sound mind to do so. In your will you should make provision for who you would like to care for your children or at least the youngest if you become unable to do so for any reason.

While it may not be appropriate for the girls to be making decisions about your wife's care, it is important that they are kept informed and encouraged to give their opinions at a level suited to their ability to understand and emotional resilience.

It would be helpful to consider if there is a trustworthy adult female who may be able to support the girls with things they may not be comfortable talking to their dad about if they haven't already got someone. It may not be needed yet but probably will be in the future.

I hope you all find the support you need.
Thanks. Have session with solicitor next week to talk about will update, etc. I have a close network of Helen's friends who are there for the girls too.
 

Angel 4

Registered User
Jan 27, 2022
104
0
Essex
Hi everyone - checking in for the first time as my wife, Helen, was finally diagnosed with young onset Alzheimer's last week, after symptoms that have been concerning us for between 3 and 5 years (esp last 3 years with visuospatial and planning issues). Helen is 51, I am 50 and we have two teenage girls 18, 15. I feel a sense of relief myself after years of not knowing (and Helen and others in denial), and now have begun getting the help/support in place that Helen so obviously needs.
Hello, I just wanted to say hi, I’m in a similar situation my husband has been diagnosed with Familial Alzheimer’s disease he is 52, I’m 45 and we have 3 children 17, 15 & 11. I hope you find support here.
 

Sarahkb

Registered User
Apr 3, 2022
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0
Hi just wanted to say hello and let you know I am at a similar stage. My husband is 49, formally diagnosed a couple months ago and we have two children age 10 and 6. I have managed to sort wills, power of attorney but am currently ploughing through the financial affairs as he no longer works. Also the support services available. This forum has been wonderful for me in that I feel less alone. Hope that goes for you too.
 

glennwell71

New member
Mar 27, 2022
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Has anyone got any advice on financial advice (as opposed to solicitor/trusts)? Like how to arrange money, investments, etc....?
 

Triffid

Registered User
Oct 4, 2020
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Everyone’s circumstances are different but one thing that I didn’t know about that might be relevant are “care annuities” works rather like a pension that you pay an amount of money up front and the company then gaurentees a monthly payment for as long as you live.( just as a pension pays a monthly amount). It’s a way of ensuring the money lasts as long as you need it

Having said that, it hasn’t worked out for us as dad is now at end of life much sooner than expected, but it was worth it in as far as we new he would always have the money to pay for his care
 

canary

Registered User
Feb 25, 2014
25,018
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South coast
one thing that I didn’t know about that might be relevant are “care annuities” works rather like a pension that you pay an amount of money up front and the company then gaurentees a monthly payment for as long as you live.( just as a pension pays a monthly amount). It’s a way of ensuring the money lasts as long as you need it
I looked at this with mum, but you have to be careful with them because many of them only pay out the same amount of money each month for the whole time. In the three years that mum was in her care home the fees went up enormously due to inflation, increased wages for the cares and mum requiring much more care. I didnt go with one of these schemes, but if I had I am not sure that it would have increased the payment to cover the increased costs of the fees.
 

Triffid

Registered User
Oct 4, 2020
68
0
I looked at this with mum, but you have to be careful with them because many of them only pay out the same amount of money each month for the whole time. In the three years that mum was in her care home the fees went up enormously due to inflation, increased wages for the cares and mum requiring much more care. I didnt go with one of these schemes, but if I had I am not sure that it would have increased the payment to cover the increased costs of the fees.
Yes - you need to do it through a good financial advisor and have a breakdown of the costs - you can get annuities that increase year on year but they cost more. We worked out that if our care increased at 5% a year then we’d only benefit from the increasing annuity if he lived more that 3.5 years and as he’s 93 already, that seemed a reasonable gamble that wit might not be that long.
As it is he’s now at eol care, not eating or drinking, Today we were all gathered around at his bedside waiting for the end, when he suddenly scratched his nose, opened his eyes and started chatting again..! He’s still hanging in.
 

update2020

Registered User
Jan 2, 2020
333
0
I found talking to a financial advisor immensely helpful. They were able to properly calculate the benefit of different options while the solicitor knew more on the legal side. We even had one joint meeting to talk things through. The financial advisor had had special training for dementia related cases (SOLLA) and cost nothing to very little. The solicitor cost more, so I would always go to the FA first.

A trade union and specialist lawyers (hired by the employer) also worked out the financial terms of my husband leaving work (long before diagnosis). aged around 50. Involuntary redundancy or a ‘compromise agreement’ was better financially than voluntarily quitting. I was told later that I could seek to increase this settlement retrospectively after he was properly diagnosed years later.