Hi Grace I’m so sorry to hear about your husband, we are absolutely devastated! I think I have had my head in the sand for a long time and to have it confirmed is just a shock to the system! I’m here if you need anything (not sure I am much help) but can always be an ear for if you need it. Thanks for the guidance regarding PIP think I will try and get the ball rolling asap xx take care Grace your doing an amazing job xx
Husband in 30’s with Alzheimer’s
- Thread starter Lauren22
- Start date
Thank you Grace that is really helpful as we don’t really have much so was worried about fees x
Thank you Izzy we have a range of ages so from 6 up to 18. Will definitely contact the schools today and will definitely have a look at the books again thank you! XI’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
This website is Australian but there may be something in for the children -
There’s also this one -
www.alzheimersresearchuk.org
There’s also this one -
Dementia Explained - Alzheimer's Research UK
Dementia Explained has been developed by Alzheimer’s Research UK to help children and teenagers understand dementia, how it affects someone and how this could impact their lives.
www.alzheimersresearchuk.org
Hello @Lauren22 and @Grace7990
Yes, do apply for PIP and get help in filling in the form, but dont pay for someone to do this - there are charities and organisations which will help you for free - Alzheimers Society, Carers Organisations, Citizens Advice and Age UK (for people over 55) will all help (although not in all areas), so see what is available where you are.
Ive mentioned before about local carers organisations. We have a local one that I have joined and they have been an amazing help - and OH does not even have a diagnosis!
Yes, do apply for PIP and get help in filling in the form, but dont pay for someone to do this - there are charities and organisations which will help you for free - Alzheimers Society, Carers Organisations, Citizens Advice and Age UK (for people over 55) will all help (although not in all areas), so see what is available where you are.
Ive mentioned before about local carers organisations. We have a local one that I have joined and they have been an amazing help - and OH does not even have a diagnosis!
You could also ask your local Citizens Advice Bureau for help to fill in the PIP application form, or other community support/help group in your local area. maybe your local public library would have a list of community support groups that are able to help fill in the forms?
It doesn't seem to have been mentioned yet but you also should ring the Adult Social Services dept at your local Council and ask for a needs assessment and a carer's assessment for yourself. Then you will have a social worker in place who can help you through the next steps as more care becomes needed in the future. Once your husband gets Personal Independence Payment (PIP) you can apply for Carer's Allowance - it's not much though and nowhere near equivalent to a wage. Check the government website link:-
www.gov.uk
Carer's Allowance
Apply for Carer's Allowance - money to help you look after someone who needs to be cared for. Apply online or use form DS700.
@nita makes a good point about needs assessment D’s and carers’ assessments. Perhaps this link will be of help -
www.alzheimers.org.uk
The care needs assessment: support for people with dementia
This page looks at how a person with dementia can get a care assessment, who does an assessment, how they are carried out, who makes the decision, and tips for making the most of the care needs assessment. It also explains the eligibility criteria.
www.alzheimers.org.uk
Hi Lauren,
I just read your post and wanted to say hello. My husband found out he has Familial Alzheimer’s in 2021, he is now 53. (I’m 46)We have 3 children. I can relate to your situation. I’m so sorry this is happening it’s so cruel. I’m no expert and I’m muddling my way through with help & support here and from RDS they are great. I’m happy to chat to you & listen, sending you best wishes x
Hi @Lauren22 I just wanted to say hello..I am so sorry to read about your husband's diagnosis, it sounds too young to even imagine, this disease is so cruel.
Plenty of advice shared already and lots more available when you need it.
I just wanted to add that the forum is here when you need to vent or an ear as well, not just advice. There's so much to digest and process, it's overwhelming. I've found it hard to engage with local groups as lots of the members are a lot older than me but the group here is a great, inclusive environment of people who can relate and a safe space to open up.
Plenty of advice shared already and lots more available when you need it.
I just wanted to add that the forum is here when you need to vent or an ear as well, not just advice. There's so much to digest and process, it's overwhelming. I've found it hard to engage with local groups as lots of the members are a lot older than me but the group here is a great, inclusive environment of people who can relate and a safe space to open up.
Hi @Lauren22, don't forget to do your own power of attorney and think very carefully as to who you want to be your attorneys as if anything happens to you (god forbid) your husband in all likelihood will not be able to act for you. For the same reasons you need to think about who would care for your children if anything happens while they are still young.
If you live in your own home, again look at how the property is owned - there are 2 different ways of joint ownership - one where the other half automatically goes to the other on death and the other where each person can will their half to whomever. You want to be able to will your half to your children if anything happens to you, otherwise the whole value could be taken up in care home fees.
My heart goes out to you, it must be such a difficult time.
If you live in your own home, again look at how the property is owned - there are 2 different ways of joint ownership - one where the other half automatically goes to the other on death and the other where each person can will their half to whomever. You want to be able to will your half to your children if anything happens to you, otherwise the whole value could be taken up in care home fees.
My heart goes out to you, it must be such a difficult time.
Grace I'm so sorry to hear about your husband, it's such a shock and too much to take in , the first thing the mental health dr. advised us to do was P.O.A. it doesn't need to be just one person, our grown up family have P.O.A. for both of us ...occupational therapist arranged for an extra banister for the stairs and hand grips at front and back door hope you get things sorted out..
Hi my husband is 50. He was diagnosed at 48 with Frontotemporal dementia. This was after a lot of arguing with the gp who initially treated him for depression and stress. We have 2 children age 7 and 11.
I was honest from the start with them and they know that lots of things aren’t daddy but his dementia. I told school straight away and they have provided wonderful support.
I got power of attorney immediately snd it was the best thing I did. Along with wills. My husband has deteriorated rapidly and we are now looking at residential care and without power of attorney it would have been horrendous.
He had to stop working when he was diagnosed, he had struggled for months before anyway so getting PIP applied for, universal credit in our case (I have had to reduce my days in work to 2 only now to meet all the needs of the children and him) these were essential.
Basically all the practical stuff asap and in my case, for my children, honest answers and information from the start.
It’s very hard. But forums like this are so helpful.
I was honest from the start with them and they know that lots of things aren’t daddy but his dementia. I told school straight away and they have provided wonderful support.
I got power of attorney immediately snd it was the best thing I did. Along with wills. My husband has deteriorated rapidly and we are now looking at residential care and without power of attorney it would have been horrendous.
He had to stop working when he was diagnosed, he had struggled for months before anyway so getting PIP applied for, universal credit in our case (I have had to reduce my days in work to 2 only now to meet all the needs of the children and him) these were essential.
Basically all the practical stuff asap and in my case, for my children, honest answers and information from the start.
It’s very hard. But forums like this are so helpful.
Hi @Sarahkb
My heart goes out to you. Best wishes for thecfuture.
Please look at what @silkiest posted above - it is:
"don't forget to do your own power of attorney and think very carefully as to who you want to be your attorneys as if anything happens to you (god forbid) your husband in all likelihood will not be able to act for you. For the same reasons you need to think about who would care for your children if anything happens while they are still young.
If you live in your own home, again look at how the property is owned - there are 2 different ways of joint ownership - one where the other half automatically goes to the other on death and the other where each person can will their half to whomever. You want to be able to will your half to your children if anything happens to you, otherwise the whole value could be taken up in care home fees."
I'm sorry to say when the going get tough, the tough get going! You'll need to be tough, if you can be.
Thank you.
I did my pow too and my will. The solicitor attached a letter making it clear why I had not named my husband. Everything is to the children and family named to care for them (god forbid) it’s all very hard but necessary and it has without doubt been the best thing I did getting it all sorted immediately.
I did my pow too and my will. The solicitor attached a letter making it clear why I had not named my husband. Everything is to the children and family named to care for them (god forbid) it’s all very hard but necessary and it has without doubt been the best thing I did getting it all sorted immediately.
Hello,
So sorry in the delay in getting back to you things have been at bit maxi recently. I’m so sorry your in this position too!! Do you mind me asking how old your children are? I have joined the RDS group too but please feel free to message me anytime would be nice to speak to you. Take care and thank you for replying. Lauren xx
Thanks so much for replying Rachael! It seems a wonderful group of people on here and can’t thank everyone enough. I still feel way out of my depth but have get a sense of support I didn’t know I needed so thank you so much xx
Thank you so much for your reply, I didn’t think about anything happening to me so definitely something to think about!! Never realised how
much there would be to sort xx
