Husband in 30’s with Alzheimer’s

[Lauren22]

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.

Hello Sarah, so sorry to hear about your situation it is just so cruel! I spoke with the children yesterday and was as honest as I could be and have informed the schools, who have said they will keep an eye on them for me. I know it may sound like a silly question but I’m really worried about having to give up work to care for him as we don’t have much support but I have looked into financial help and don’t think we would manage. Is there any care you are entitled to so I could stay in work a couple of days still? Thank you so much for replying and here if you ever want to talk xx

 

[Banjomansmate]

Even without the problem of dementia in the offing I wrote my Will when my children were young, stating who I wished to care for them if anything happened to their Dad and me.
Unfortunately I cannot convince my son in law to write a Will and have offered to pay for my daughter to get hers done but with no success!

 

[Sarahkb]

Hello Sarah, so sorry to hear about your situation it is just so cruel! I spoke with the children yesterday and was as honest as I could be and have informed the schools, who have said they will keep an eye on them for me. I know it may sound like a silly question but I’m really worried about having to give up work to care for him as we don’t have much support but I have looked into financial help and don’t think we would manage. Is there any care you are entitled to so I could stay in work a couple of days still? Thank you so much for replying and here if you ever want to talk xx

Hi I reduced my days to 2 which is the maximum I can manage with childcare and my husbands needs. I had a carers assessment (referred myself) and have a cleaner once a week funded which has made s huge difference and taken as as off. My husband has support workers every day snd attends s day centre 3 days a week so this enables me to work and run kids around etc. he is now at the stage where he need someone with him all the time snd we are starting transition to residential care which I can’t quite believe is real at the moment. Too hard.
My husband had s needs assessment by adult social care as soon as he was diagnosed (I rang and referred us) they did a financial assessment which determined if we were entitled to support or had to fund ourselves. We were below the threshold.
It’s been very difficult getting support a lot of chasing and pushing but he and you are entitled to it. I hope you manage to get something in place.
Apart from financially, keeping my job going has kept me going. I think I would have become very depressed without it. It’s definitely helped my own mental health.

 

[Angel 4]

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

Hi @Lauren22,

Not at all my children are 18, 16 & 12 so teenage years are in full swing!
It would be good to keep in touch, happy to chat anytime too xx

 

[Lauren22]

Hi I reduced my days to 2 which is the maximum I can manage with childcare and my husbands needs. I had a carers assessment (referred myself) and have a cleaner once a week funded which has made s huge difference and taken as as off. My husband has support workers every day snd attends s day centre 3 days a week so this enables me to work and run kids around etc. he is now at the stage where he need someone with him all the time snd we are starting transition to residential care which I can’t quite believe is real at the moment. Too hard.
My husband had s needs assessment by adult social care as soon as he was diagnosed (I rang and referred us) they did a financial assessment which determined if we were entitled to support or had to fund ourselves. We were below the threshold.
It’s been very difficult getting support a lot of chasing and pushing but he and you are entitled to it. I hope you manage to get something in place.
Apart from financially, keeping my job going has kept me going. I think I would have become very depressed without it. It’s definitely helped my own mental health.

Hi Sarahkb,
Thank you so much for all the information it has helped so so much! I agree work is one thing that is keeping some normality in all of this and I would like to be able to keep doing it but was worried about the help/support for my husband. I am so sorry to hear you are starting transition into residential care, I imagine it to be a very scary and worrying time for you all and please private message me for anything whether that be to let of some steam or just a check in I honestly mean that xx