Husband in 30’s with Alzheimer’s

[Lauren22]

Hello,
I’m not sure what I should even be asking but my husband who is 38 has just been diagnosed with presenelin 1 mutation of Alzheimer’s. We have 3 children and have no idea what to tell them or where to start with this whole journey Ie work, financial help and general support. Any advice or support more than welcome and I hope you are all doing ok.
Thanks
Lauren

 

[Raest]

my husband was diagnosed at 56 last year and it was such a shock. I have no advice on the children but get power of attorney in place for financial and health asap. We also found an independent financial advisor really helpful. Give yourself time to get over the shock and there is lots of useful information on the site and forums

 

[Jessbow]

How is it affecting hm at the moment ?

just out of curiosity, how did you come about this diagnosis now?

 

[canary]

Hi @Lauren22

Is there a local carers group/charity/society near you? Do an internet search to see. If there is one it is a great help - they will often help with things like applying for benefits (your OH should be eligible for PIP and if he is no longer working, for ESA as well) and help with form filling.
They can often help with support too
xx

 

[nita]

@Lauren22 - sorry to hear this and it must be devastating for you and your family. Did you know there is a Rare Dementia Support Group? I hope they can help you. I would get POA and your wills in place if you haven't already.

 

[Violet Jane]

I’m so very sad to read your post, @Lauren22. How dreadfully unfair for all of you. You must be devastated.

As well as sorting out wills and both types of Power of Attorney I would find out about medical retirement - and permanent health insurance if your husband has it - in anticipation of your husband having to give up work. A Carers Centre or Advice Centre will be able to support you with claiming benefits.

I would tell your children’s school(s) so that they can provide support if needed.

There are other people on this forum who have partners or parents with early onset dementia and I hope that they will be along soon because early onset dementia brings additional problems, particularly if there are dependent children.

Do keep posting for advice and support whenever you feel able. We all want to support you.

 

[Antonia86]

Hello,
I’m not sure what I should even be asking but my husband who is 38 has just been diagnosed with presenelin 1 mutation of Alzheimer’s. We have 3 children and have no idea what to tell them or where to start with this whole journey Ie work, financial help and general support. Any advice or support more than welcome and I hope you are all doing ok.
Thanks
Lauren

Hi I’m sorry to hear this!
So the PIP application is probably the best place to start. These forms are to give you money that you are entitled to. The issue with the forms are they are white easy to be rejected! You can pay people who specialise in them to help fill them in!
Once you have this you can apply for attendance allowed and a reduction in your council tax and things like that!
It’s hard to know what’s out there sometimes. The lady from the Alzheimer’s society has been amazing for us in making sure we have known what we are entitled to x

 

[Louise7]

Hello @Lauren22 and welcome to Dementia Talking Point but so sorry to hear of your situation. You will find friendly support here from people who understand.

You've received some good advice already, and I'd also recommend giving the Dementia Support Line a call as they are really helpful and very experienced and will also be able to point you in the direction of local support:

Dementia Support Line

If you need dementia support, we’re here for you. Get personalised information, support and advice by calling us on 0333 150 3456.

www.alzheimers.org.uk

The Admiral Nurses also provide support to families affected by dementia:

How we can support you

Dementia UK is a charity that provides Admiral Nurses for families affected by dementia. Call our Dementia Helpline to find out how we can support you.

www.dementiauk.org

Here's a link to the Rare Dementia Support group mentioned above:

Rare Dementia Support

www.raredementiasupport.org

 

[JAYBEN]

Hello,
I’m not sure what I should even be asking but my husband who is 38 has just been diagnosed with presenelin 1 mutation of Alzheimer’s. We have 3 children and have no idea what to tell them or where to start with this whole journey Ie work, financial help and general support. Any advice or support more than welcome and I hope you are all doing ok.
Thanks
Lauren

Hello,
I’m not sure what I should even be asking but my husband who is 38 has just been diagnosed with presenelin 1 mutation of Alzheimer’s. We have 3 children and have no idea what to tell them or where to start with this whole journey Ie work, financial help and general support. Any advice or support more than welcome and I hope you are all doing ok.
Thanks
Lauren

So sorry to hear this. I'm not sure what that particular diagnosis entails but as a wife who's husband was diagnosed with vascular dementia 3 weeks ago I can understand how you are feeling . You will get lots of advice and support from this group and my advice would be to phone the Alzheimer's Support line . They have been a great help to me and I would have been lost without them . They have not only mentally supported me but have been excellent in advising me on things we need to do to ensure continuation of health and financial matters in the future , and we have just applied for the Legal Power of Attorney .
As for telling the children , I would imagine the approach depends on their age and you definately need expert advice on how and when to tell them, again the Alzheimer's Helpline should be able to help with this. We have grown up children and I know telling them was very difficult for me , in fact I have probably left it up to them in some respects to find out more about their Dad's condition as I just couldn't bear to tell them in detail. I am still in a grieving process and no doubt some days will be better than others but for the moment we deal with it a day at a time. Try and stay strong , it can be difficult , but if your husband can talk to you about it then get things in place as soon as possible . That's what we we advised to do , and it makes sense , and if something did happen suddenly then at least everything should be straightforward .
I hope you and your family can get all the support you need in the journey ahead , you've certainly come to the right place for support . Everyone's journey is different but we can all try and support each other the best we can , even if its just to vent about something . Please keep posting and let us know how you are getting on , its not just your husband who needs care you also need to look after yourself .

 

[Lauren22]

my husband was diagnosed at 56 last year and it was such a shock. I have no advice on the children but get power of attorney in place for financial and health asap. We also found an independent financial advisor really helpful. Give yourself time to get over the shock and there is lots of useful information on the site and forums

Thank you so much for your help and I’m also sorry to hear about your husband, think like you say we just need a little time to try and get our heads around it. x

 

[Lauren22]

How is it affecting hm at the moment ?

just out of curiosity, how did you come about this diagnosis now?

He has been forgetting things, getting confused over simple tasks I.e cooking etc and now his speech has started to have a stammer and sometimes he can’t find the right words. We put it down to stress at first but we have been on our journey with the NHS now since last April and got his diagnosis this week. Hope that helps.

 

[Lauren22]

Hi @Lauren22

Is there a local carers group/charity/society near you? Do an internet search to see. If there is one it is a great help - they will often help with things like applying for benefits (your OH should be eligible for PIP and if he is no longer working, for ESA as well) and help with form filling.
They can often help with support too
xx

Thank you so much, I will definitely look into this, it’s just a minefield and so much to take in but thought if I can reach out to people who are in a similar position it might help get a better understanding. Thank you xx

 

[Lauren22]

@Lauren22 - sorry to hear this and it must be devastating for you and your family. Did you know there is a Rare Dementia Support Group? I hope they can help you. I would get POA and your wills in place if you haven't already.

Thank you Nita, I was not aware about the rare support group so thank you so so much will definitely look into this! We haven’t gotten anything in place at the moment so will have to start thinking about this. Thank you so much for all your help x

 

[Lauren22]

I’m so very sad to read your post, @Lauren22. How dreadfully unfair for all of you. You must be devastated.

As well as sorting out wills and both types of Power of Attorney I would find out about medical retirement - and permanent health insurance if your husband has it - in anticipation of your husband having to give up work. A Carers Centre or Advice Centre will be able to support you with claiming benefits.

I would tell your children’s school(s) so that they can provide support if needed.

There are other people on this forum who have partners or parents with early onset dementia and I hope that they will be along soon because early onset dementia brings additional problems, particularly if there are dependent children.

Do keep posting for advice and support whenever you feel able. We all want to support you.

Thank you so much for your reply, I hadn’t thought about contacting the schools so shall do that today thank you. I’m overwhelmed with the amount of support already exceptionally grateful to everyone in such a difficult time. X

 

[Lauren22]

Hi I’m sorry to hear this!
So the PIP application is probably the best place to start. These forms are to give you money that you are entitled to. The issue with the forms are they are white easy to be rejected! You can pay people who specialise in them to help fill them in!
Once you have this you can apply for attendance allowed and a reduction in your council tax and things like that!
It’s hard to know what’s out there sometimes. The lady from the Alzheimer’s society has been amazing for us in making sure we have known what we are entitled to x

Thank you so much!! We have no idea in which direction we were meant to be going in so this is brilliant thank you! I will give them a call, hope your doing ok xx

 

[Lauren22]

Thank you Louise! I have just booked a phone call appointment with the admiral nurses as I wasn’t aware about them so thank you! Will also look at the rare dementia group also! Can’t thank you all enough! X

 

[Grace7990]

Thank you so much!! We have no idea in which direction we were meant to be going in so this is brilliant thank you! I will give them a call, hope your doing ok xx

Attendance allowance is for people over the age of retirement PIP is what you need there is a rules book for Disability’s re Benefit rules book on the disability web site I would recommend that it has the i formation you need in there .
My husband was Diagnosed yesterday we are devastated

 

[Grace7990]

Thank you Nita, I was not aware about the rare support group so thank you so so much will definitely look into this! We haven’t gotten anything in place at the moment so will have to start thinking about this. Thank you so much for all your help x

Ps power of attorney is easy to do your self on gov.com and you just pay the £80 court fee , solicitors charge a fortune

 

[Izzy]

I’m so sorry to read about your husband’s diagnosis. Such a young age.

I would certainly talk to the children’s schools. It will help the children so much if the staff understand what they are facing.

I’m not sure how old they are but this link might be of use -

Explaining dementia to children and young people

When a close family member or friend develops dementia, children and young people need support. You may need to help them understand what dementia is, and what a diagnosis means for their relationship.

www.alzheimers.org.uk

There are lots of books around about dementia but I think most of them talk about a grandparent. This one seems to be more general -

My Book about Brains, Change and Dementia

Selected for Reading Well for Dementia 2024: endorsed by health experts, charities and people affected by dementia.'Sometimes, a person's brain gets sick with a disease called dementia.'What does dementia do to the brain? What changes might we notice if a parent or grandparent has the disease...

uk.jkp.com

A few of the books here are not about grandparents.

Books about dementia for children

Dementia UK is a charity that provides Admiral Nurses for families affected by dementia. Call our Dementia Helpline to find out how we can support you.

www.dementiauk.org

 

[Izzy]

@Grace7990 I‘m sorry to hear about your husband’s diagnosis.