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My wife diagnosed with Alzheimer's aged 52

Jeffd

New member
Jun 4, 2021
3
0
My wife Jo was diagnosed with Alzheimer's back in November last year at the age of 52, We had been trying to get her diagnosed for over 12 months with the 1st Covid lockdown happening 4 days before her appointment was due at the memory clinic. I'm 46 and I have some experience with this disease as my dad passed away in May last year because of it.
I am dreading the future, I have been trying to process it all for the last 6 months and I don't know what to do. I am trying to get her moved back to where she grew up to be closer to her family and friends to get more support, but because of the financial difficulties we got into before she was diagnosed (she was unexpectedly out of work for 2 years) I am struggling to get a mortgage.
I know that she is going to get worse and I know that I am going to eventually have to make a choice between work and caring for her and I don't know if I can give up my job. I know I can't financially and I am worried her family are going to try and push me in that direction. They have already expressed that they don't want her to go into a home.
I just feel that my life is on hold now and I feel selfish and guilty for thinking that.
I have done some of the practical stuff PIP, LPA's etc but I am struggling with everything else.
 

kindred

Registered User
Apr 8, 2018
2,750
0
My wife Jo was diagnosed with Alzheimer's back in November last year at the age of 52, We had been trying to get her diagnosed for over 12 months with the 1st Covid lockdown happening 4 days before her appointment was due at the memory clinic. I'm 46 and I have some experience with this disease as my dad passed away in May last year because of it.
I am dreading the future, I have been trying to process it all for the last 6 months and I don't know what to do. I am trying to get her moved back to where she grew up to be closer to her family and friends to get more support, but because of the financial difficulties we got into before she was diagnosed (she was unexpectedly out of work for 2 years) I am struggling to get a mortgage.
I know that she is going to get worse and I know that I am going to eventually have to make a choice between work and caring for her and I don't know if I can give up my job. I know I can't financially and I am worried her family are going to try and push me in that direction. They have already expressed that they don't want her to go into a home.
I just feel that my life is on hold now and I feel selfish and guilty for thinking that.
I have done some of the practical stuff PIP, LPA's etc but I am struggling with everything else.
Welcome, you will find this forum full of information and support.
I have been through this although I am older than you. I feel you are much to young to consider giving up your working life and I know it sounds harsh but I would prioritise yourself as a wage earner.
This may well mean a home will be considered at some stage. I kept my working life going on a reduced basis with the aid of paid carers but it was pretty hellish. But it does mean that I am still in work now, after my husbands death.
This is such a hard situation, please don’t let it derail your life completely.
Warmest, Kindred
 

northumbrian_k

Registered User
Mar 2, 2017
1,514
0
Newcastle
Hi @Jeffd and welcome to Dementia Talking Point. I am sorry to hear that your wife was diagnosed at such a young age. That must be really stressful for you. My wife was in her 70s when dementia hit. We struggled on for a few years but eventually I gave up work, which I was fortunate to be able to do at age 59.

I would say not to rush into decisions of any kind. Pay heed to people who are clearly out to help you and avoid the 'advice' of family members or others who aren't living the dementia experience. Moving to be nearer family might be a good option but may make little difference in terms of proper, hands on, every day support.

Some way down the line a care home may be what your wife requires to meet her needs. That was the case for my wife and she is better for it. Rule nothing out. Start with some practical steps about what is needed in the short term rather than looking too far ahead. I see that you have already arranged Power of Attorney.

There's lots of information on this site and many members who will be able to support and help you. Have a look at the Alzheimer's Society website. It has a wide range of published information including specific guidance about dementia in people below the age of 65. The Dementia Connect support line is also available and can offer personalised information, support and advice.

Above all don't be afraid to ask anything in these forums.
 
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AwayWithTheFairies

Registered User
Apr 21, 2021
140
0
@jefd sorry to read this. And to echo, don’t count on any actual help from others in your family. Don’t immediately uproot everything to move nearer to them until they have proven their worth as a support to you in this new and dreadful situation. Sadly many people find their family and friends provide little more that a chorus of criticism, judgement and interference or obstruction in the tough decisions that may come up. A book I have found useful myself is “The Selfish Pig’s Guide to Caring”, which is not at all as negative as it sounds.
 

Chaplin

Registered User
May 24, 2015
140
0
Bristol
I’m sorry to read about your wife’s diagnosis, dementia at any age is fear of the unknown but you do need to take care of ‘you’ so you can give your wife the best care and support. Would your wife consider going to day centres where she can take part in activities and be supported by experienced people? If so that will help you maintain your working life which is good for you both. Don’t rush into a move that may not actually benefit either of you. Speak to your employer if you’ve not done so and ask for flexible working. Most good employers will support you so you can balance work with your need to support your wife. Ask for help when needed, don’t try and do it all alone. Many here will tell you about Carer burnout!
ive found you can ask anything here, people have a wealth of personal experiences And can offer sound advice on a whole range of topics. Take care,
 

Ellie5

New member
Apr 5, 2019
5
0
My Husband was diagnosed at the age of 57yrs. This was such a shock to both of us. He is now in the 4th year. Over the years he has deteriorated. We do now have a good team behind us, which is really a life line and I don`t know what we would do without their help. We have carers every morning to shower and give him breakfast. This allows a little `me` time, without worrying what my husband is doing. He also goes to a Day Centre 3 days a week, especially for people of his age group. I found it really hard when they closed for a few months due to Covid and boy, did I struggle. Please ask your Social Worker what is actually out there for your wife. I wish you strength in caring for your wife. Yes it can be hard at times but with others helping you, things can be so much easier for you. A carer also needs to take care of himself/herself too. This is so important. Always ask for help and understanding with the people around you too.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,322
0
Kent
Hello @Jeffd There`s nothing to feel selfish and guilty about for feeling the way you do. Dementia at such a young age is heartbreaking.

I`m hoping local support is slowly getting back on track now and I can only advise you to get as much practical support as you can.

 

Veritas

Registered User
Jun 15, 2020
95
0
My wife Jo was diagnosed with Alzheimer's back in November last year at the age of 52, We had been trying to get her diagnosed for over 12 months with the 1st Covid lockdown happening 4 days before her appointment was due at the memory clinic. I'm 46 and I have some experience with this disease as my dad passed away in May last year because of it.
I am dreading the future, I have been trying to process it all for the last 6 months and I don't know what to do. I am trying to get her moved back to where she grew up to be closer to her family and friends to get more support, but because of the financial difficulties we got into before she was diagnosed (she was unexpectedly out of work for 2 years) I am struggling to get a mortgage.
I know that she is going to get worse and I know that I am going to eventually have to make a choice between work and caring for her and I don't know if I can give up my job. I know I can't financially and I am worried her family are going to try and push me in that direction. They have already expressed that they don't want her to go into a home.
I just feel that my life is on hold now and I feel selfish and guilty for thinking that.
I have done some of the practical stuff PIP, LPA's etc but I am struggling with everything else.
The only thing I would add to what’s already been said is to say that her family do not get to decide about where she should be cared for, unless they are doing at least as much as you are to support her, and even then your views and wishes take precedence.

Whatever you do, do not give up your job. You are not legally required to care for anyone and if it’s not possible for you to take on being a full time carer no-one can make you - except yourself. And this is where you need to keep a firm eye on ‘after’ - trying to re-establish a working life in your fifties is no picnic.

Unfortunately your life is on ‘hold’ at the moment - true for so many of us - and you are not selfish nor should you feel guilty for thinking that. It might be worth having a chat with your GP or with one of the helplines as it sounds to me as if you could do with a lightning conductor. By that I mean someone who isn’t emotionally involved but who gets what you’re talking about and won’t be surprised by anything you say, however “unaccceptable” you might think it is.
 

Jeffd

New member
Jun 4, 2021
3
0
Thank you all for your responses.
I am glad that I'm not on my own in thinking the way I do and for feeling this way. I am going to try and speak to my doctor this week and try and find out what services are available to us.
 

NEESE201

Registered User
Oct 16, 2020
15
0
Sudbury
My wife Jo was diagnosed with Alzheimer's back in November last year at the age of 52, We had been trying to get her diagnosed for over 12 months with the 1st Covid lockdown happening 4 days before her appointment was due at the memory clinic. I'm 46 and I have some experience with this disease as my dad passed away in May last year because of it.
I am dreading the future, I have been trying to process it all for the last 6 months and I don't know what to do. I am trying to get her moved back to where she grew up to be closer to her family and friends to get more support, but because of the financial difficulties we got into before she was diagnosed (she was unexpectedly out of work for 2 years) I am struggling to get a mortgage.
I know that she is going to get worse and I know that I am going to eventually have to make a choice between work and caring for her and I don't know if I can give up my job. I know I can't financially and I am worried her family are going to try and push me in that direction. They have already expressed that they don't want her to go into a home.
I just feel that my life is on hold now and I feel selfish and guilty for thinking that.
I have done some of the practical stuff PIP, LPA's etc but I am struggling with everything else.
HI So sorry to read your post - i dont know how to help you but i would like to just say my husband age (now 64) was diagnosed with early onset alzheimers last october i feel devastated - he has had to leave work and we dont get state pension yet so we are now on benefits (never been on benefits before ) and the past 8 months has been a constant phone call to sort out finances and medical and advice/help - I have taken over all bills etc and am going to apply for 2 power of attorneys - next week i am starting to feel more in control - i also feel selfish that i am so tied down sometimes because i have to plan more and i do not get much time to myself - this illness ruins more than one life - it must be very hard for you to work as well as care for your wife - i cannot leave my husband very long - i hope you get good advice and help - all the best Neese
 

RER

Registered User
Jun 23, 2021
13
0
Dementia is hard, possibly more for the caretaker than for the patient. You are not alone in the feelings you have. But DON’T quit your job without giving it a lot of thought. Having financial problems on top of everything else that comes with dementia could be almost unbearable.

So sorry you are going through this. You are young and still have many years left to find great joy and comfort. May they come to you soon with love.
 

Lynne K

New member
Mar 5, 2021
6
0
My daughter is 47 and has been in hospital since March 2020 with what was thought to be schizophrenia. She didn't respond to any of the terrible drugs for schizophrenia and, having come off them slowly, its now thought she has Alzheimer's. She is now considered to have lost mental capacity and since she has no PoA Social Services say they are going to court to take over her affairs. She has no house to sell nor much money but I am her adoptee for her Universal Credit, appointed by my daughter. Can Social Services do this?
 

Jeffd

New member
Jun 4, 2021
3
0
Hi
My daughter is 47 and has been in hospital since March 2020 with what was thought to be schizophrenia. She didn't respond to any of the terrible drugs for schizophrenia and, having come off them slowly, its now thought she has Alzheimer's. She is now considered to have lost mental capacity and since she has no PoA Social Services say they are going to court to take over her affairs. She has no house to sell nor much money but I am her adoptee for her Universal Credit, appointed by my daughter. Can Social Services do this?
Lynne I'm really sorry for your situation and for your daughters situation. I honestly don't have an answer for you. I wish I did, I hope that someone on here can help you.
 

Veritas

Registered User
Jun 15, 2020
95
0
My daughter is 47 and has been in hospital since March 2020 with what was thought to be schizophrenia. She didn't respond to any of the terrible drugs for schizophrenia and, having come off them slowly, its now thought she has Alzheimer's. She is now considered to have lost mental capacity and since she has no PoA Social Services say they are going to court to take over her affairs. She has no house to sell nor much money but I am her adoptee for her Universal Credit, appointed by my daughter. Can Social Services do this?
How very sad for both you and your daughter.

I don't know what the precise legal position is, but the practical reality is that once your daughter is placed in residential care funded from the local authority or the NHS, she will lose most of her benefits anyway, so there won't be much left to administer. Are Social Services aware that you are her appointee at the moment? If they are, have they said why they want to take over from you?
 

canary

Registered User
Feb 25, 2014
15,676
0
South coast
Hello @Lynne K and welcome to Talking Point

When someone moves into a care home they have to have someone with either POA or Court of Protection deputyship. My mum was in a similar position - I was her DWP appointee and could administer her state pension and Attendance Allowance and I had been added to bank as a third party, but mum would not give me POA. When she moved into her care home, SS asked me whether I was willing to apply to the Court of Protection for deputyship. If I had not been willing, they would have applied to the court themselves and the Court of Protection would have appointed a solicitor for her.

It sounds like this is what has happened in your mums case. Is there any reason why you could not apply for CoP deputyship yourself?