Husband of 54 years just diagnosed

[SR70]

Hi - I’m new to this group. My 54 year old husband (we’ve been married 28 years) has recently been diagnosed with Alzheimer’s. He’s working although as a result of worrying about his ongoing memory lapses (and subsequently being diagnosed) I unearthed unpaid bills, debts etc which I knew nothing about. We will most prob need to sell our house to get by. (2 kids 15 and 20 who I haven’t told yet about their dads diagnosis - how do I do this?!). I’m also looking to increase my p/t work to full time work now to help us out of this mountain of a mess.
I am so sad and angry all at the same time plus worry beyond anything. (And feel guilty for these feelings too) I cry at some point every day for what life has thrown at us (I went through breast cancer when I was 34 too). I’m a positive person but this is testing me beyond anything and I feel like I’ve been robbed of my life (things were always good in all ways before now) and the future I had always imagined I’d had has been taken away. Getting through breast cancer made me resilient and strong in all ways, but this is making me crumble.
What I suppose I’m after in this group is to hear from others about how they have /are coping, especially people who are dealing with a young partner. I also wonder how many years before he becomes unable to work/be left without care? I know it’s hard to say and everyone is different but I’m just wondering if I’ll be able to work for years or he’ll need care around the clock before I know it? Sorry - but lots of questions but I’m so worried and trying to process it all, whilst juggling everything and everyone.
Thankyou x

 

[Izzy]

Welcome to the forum @SR70.

I’m so sorry to read about your circumstances. It must be heartbreaking to be in this situation - and at such a young age. So hard for your children too.

You might find this link useful for your 15 year old -

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

As regards your financial issues, it might be worth having a chat with someone on the Dementia Connect Support line -

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

This link with information on young onset dementia might also be useful -

Young-onset dementia

Find out what young-onset dementia is, including the causes and symptoms, and how it is diagnosed and treated.

www.alzheimers.org.uk

I’m so glad you have found the forum. You‘ll find lots of understanding and support here. Keep posting.

 

[jaymor]

Hi @SR70 and welcome to the forum.

So sorry that you are both facing this at such an early age. You will find as you start to use the forum that members are willing to help and support each other. some members, like yourself, at the beginning and others further along and those who are no longer carers, all willing to answer questions and support.

There are some things you can do now to make life easier in the future and that’s to make sure you have wills and they are up to date. Arranging Lasting power of attorney, LPA for bothering finance and health will make life easier when you need to take over the finances and welfare of your husband.

Please keep posting and use the forum to help you, we are here to support, advise, we all understand and we all at times. need to rant too. We all understand the pressures.

 

[SR70]

Thankyou for your messages - truly appreciate them. Yes this is the beginning for me / us and very much navigating it all. Good to have the online support so thank you

 

[canary]

Hi @SR70

My OH was about the same age your husband when he started with cognitive decline, although he still does not have a diagnosis.

I can tell you what we did, although I dont know how much would be appropriate to your situation. I was working full time when I realised that OH was having problems. He was working for a large company at the time and was struggling. The company tried to get him dismissed, but I contacted the union and they managed to get him medically retired. This gave him a lump sum, which solved our immediate financial problems (he was falling for scams and giving a lot of our savings away - which I had to put a stop to), and also gave him a pension - smaller than if he had worked till state pension age, but OK. It also meant that he could claim for DVLA/PIP and ESA (support).

I found it difficult to work full-time, so we moved closer to family and downsized to a small terraced house which only required a very small mortgage (now paid off). The children moved out to go to uni and I thought things would improve, but OH was declining and then mum was diagnosed with Alzheimers. It became impossible for me to continue working, so I took early retirement and claimed carers allowance.

We have had to make considerable changes to our life-style, but it has been OK - we have adapted better than I thought we might have done and OH is no longer able to go on holiday, or evenings out, so I suppose it doesnt matter. We are financially OK, although the present economic climate is making it tight.

OHs decline has been quite slow, but not everyone is the same - some people with EOD decline very quickly and there is no knowing which group anyone will be in. Im afraid that this makes things impossible to plan for the long term. I have just had to do things so that it was OK for that time and then change/adapt as something altered. Im not saying it is easy - nothing with dementia is - and I have reached carers breakdown because I didnt get carers in to help me soon enough, but we have survived.

You will survive too
xxx

 

[Violet Jane]

@SR70, I’m so sorry to read about your husband’s diagnosis at such a young age. It’s heartbreaking for all of you.

From reading other posts on this forum it’s not uncommon for a person in the early stages of dementia to run up debts / be scammed before s/he is actually diagnosed. Depending on who the debts are to and how they were run up it might be possible for some of them to be written off. It might also be worthwhile contacting a debt advice service, preferably a free one such as a CAB or a money advice service, to help you draw up a realistic repayment plan.

There’s no timeline for dementia but if your husband has memory problems and does a job which involves analysis, planning and organisation then I imagine that he will start to struggle to do it effectively before too long. A medical retirement would seem the best option but you might need a union or a solicitor to help you with this.

Sadly, there are quite a few forum members with spouses and partners with young onset dementia and I hope that some of them will be along soon to give you some practical advice. I recollect that one consulted a financial adviser to help her plan for the family’s financial future.

 

[slim-jim]

@SR70, I’m so sorry to read about your husband’s diagnosis at such a young age. It’s heartbreaking for all of you.

From reading other posts on this forum it’s not uncommon for a person in the early stages of dementia to run up debts / be scammed before s/he is actually diagnosed. Depending on who the debts are to and how they were run up it might be possible for some of them to be written off. It might also be worthwhile contacting a debt advice service, preferably a free one such as a CAB or a money advice service, to help you draw up a realistic repayment plan.

There’s no timeline for dementia but if your husband has memory problems and does a job which involves analysis, planning and organisation then I imagine that he will start to struggle to do it effectively before too long. A medical retirement would seem the best option but you might need a union or a solicitor to help you with this.

Sadly, there are quite a few forum members with spouses and partners with young onset dementia and I hope that some of them will be along soon to give you some practical advice. I recollect that one consulted a financial adviser to help her plan for the family’s financial future.

 

[SR70]

Hi @SR70

My OH was about the same age your husband when he started with cognitive decline, although he still does not have a diagnosis.

I can tell you what we did, although I dont know how much would be appropriate to your situation. I was working full time when I realised that OH was having problems. He was working for a large company at the time and was struggling. The company tried to get him dismissed, but I contacted the union and they managed to get him medically retired. This gave him a lump sum, which solved our immediate financial problems (he was falling for scams and giving a lot of our savings away - which I had to put a stop to), and also gave him a pension - smaller than if he had worked till state pension age, but OK. It also meant that he could claim for DVLA/PIP and ESA (support).

I found it difficult to work full-time, so we moved closer to family and downsized to a small terraced house which only required a very small mortgage (now paid off). The children moved out to go to uni and I thought things would improve, but OH was declining and then mum was diagnosed with Alzheimers. It became impossible for me to continue working, so I took early retirement and claimed carers allowance.

We have had to make considerable changes to our life-style, but it has been OK - we have adapted better than I thought we might have done and OH is no longer able to go on holiday, or evenings out, so I suppose it doesnt matter. We are financially OK, although the present economic climate is making it tight.

OHs decline has been quite slow, but not everyone is the same - some people with EOD decline very quickly and there is no knowing which group anyone will be in. Im afraid that this makes things impossible to plan for the long term. I have just had to do things so that it was OK for that time and then change/adapt as something altered. Im not saying it is easy - nothing with dementia is - and I have reached carers breakdown because I didnt get carers in to help me soon enough, but we have survived.

You will survive too
xxx

Thankyou for your insight and sharing your experience. So hard for you. I appreciate you openness x

 

[Sarahkb]

Hi. My husband is 49 and recently diagnosed with early onset dementia. We have a 6 year old and 10 year old. I identify with everything in your post. I feel exactly the same, I could have written a lot of it myself.
The past 18 months in particular have been hell as debts, loans I knew nothing about came to light. With the help of my GP who wrote a supporting letter making it clear they were taken out when he was unable to understand, I have managed to appeal most of them and get written off (well default on his credit history) but without this, I don’t know how I would have kept the house or survived.
I have kept working part time, it’s a distraction rather than stress snd as he no longer works we get topped up with universal credit. We have just been awarded PIP which has helped massively.
My concerns are for the children who struggle hugely with his unpredictable, volatile behaviour. He has deteriorated very fast and continues to do so. Getting support for them to prepare and cope with grief and loss etc has been the biggest battle but they now have art therapy set up through the local hospice.
Life is hell most days to be honest and I feel consumed with anger, guilt, grief. Just like you refer to.
It’s incredibly isolating and I try very har not to think too far ahead.

 

[Sarahkb]

Forgot to say, the best thing I did was arrange lasting powers of attorney. This took 6 months due to backlogs in court dates. When the GP advised I did this I if they understand the urgency, now I’m so relieved to have it given his deterioration.
I also took his name off all bank accounts and I now manage the finances as he was spending everything and running up debts.
Money has been the biggest issue as he cannot manage this at all now but will try everything to get it, including stealing it from my childrens money boxes.

 

[Chloefr]

Thank you for your message. You did the right thing to share here. You'll find lots of support here

 

[SR70]

Hi. My husband is 49 and recently diagnosed with early onset dementia. We have a 6 year old and 10 year old. I identify with everything in your post. I feel exactly the same, I could have written a lot of it myself.
The past 18 months in particular have been hell as debts, loans I knew nothing about came to light. With the help of my GP who wrote a supporting letter making it clear they were taken out when he was unable to understand, I have managed to appeal most of them and get written off (well default on his credit history) but without this, I don’t know how I would have kept the house or survived.
I have kept working part time, it’s a distraction rather than stress snd as he no longer works we get topped up with universal credit. We have just been awarded PIP which has helped massively.
My concerns are for the children who struggle hugely with his unpredictable, volatile behaviour. He has deteriorated very fast and continues to do so. Getting support for them to prepare and cope with grief and loss etc has been the biggest battle but they now have art therapy set up through the local hospice.
Life is hell most days to be honest and I feel consumed with anger, guilt, grief. Just like you refer to.
It’s incredibly isolating and I try very har not to think too far ahead.

Hi - firstly I’m so sorry to read your message. So so hard with such young kids too. It’s however, reassuring for me to know that I’m not alone and not the only one to have not realised that this was going on too (I can now ‘plot’ him taking his eye off the ball about 2 years ago now, if I’m looking at when bills were starting to be ignored and various other financial mistakes). We started going to the dr and investigations in May this year, with the diagnosis a month ago)
I know this may be hard to describe, but I’m interested to know when you’re husband got diagnosed- and was it at that stage, mild type symptoms? My husband forgets things all the time and seems to have trouble processing / doing things (eg he unloads the dishwasher but things end up in random places in the kitchen when it’s quite obvious where plates/pans etc should go, he also has trouble with any forms now,) He’s working f/t but its worrying if he’s doing the job ok or not. At this stage I feel I need to run with it until it catches up with him, otherwise at this stage, not working would be terrible for his mental health (and of course financially)
You also said your husband deteriorated fast - do you mind me asking in what ways?
My husband used to be so sharp, intelligent incredibly witty and life and soul of conversations , but I can see his whole personality changing in front of me. It’s so sad and so hard to process as his wife.
Thanks again for sharing your experience xxxx

 

[update2020]

Hi @SR70 i had a similar experience with a young husband (early 50s) and have posted here a lot about it. Just a quick one to say that your husband may well need to stop working at some point but he should negotiate a proper medical retirement or similar (my husband negotiated a compromise agreement and involuntary redundancy). Others here have done similar. My husband had great support from his Union in doing this. He then got a lump sum and an occupational pension which was much better financially than if he had simply walked away - and this was before diagnosis. He also eventually got a full PIP (benefit) as well. Sadly he died at 65 so didn’t live until full pensionable age.

 

[Sarahkb]

Hi. My husband was formally diagnosed in March this year. I started to notice things were not right and getting really concerned about 18 months/2 years before that. I discovered loans that I knew nothing about, he lied repeatedly about them, I had to dig and try to piece everything together. I also found out his job had been reduced hours (he was self employed mortgage adviser with a small independent firm) he had fallen out with people. There were other things like he became really distant, cold, disengaged in family life. He was treated for depression and grief (he had lost both his parents close together and sister had a life limiting illness) I just thought it was all connected to that. Then he just kept losing jobs very quickly, getting offered really good ones but either leaving saying the manager was awful or some other excuse. Basically, just not kept on which I now know was todo with his communication and difficult social skills. He started to deteriorate quickly and I was constantly at the doctor. It was a fight to get her to look past depression. He started to become very aggressive, volatile, very low functioning, just totally horrendous to be honest plus terrible with money, spending everything. In October last year he was sent by the doctor for MRI scan after I broke down with the aggression and financial worries. I knew something was wrong. The children were becoming frightened of him. The scan showed significant brain damage consistent with Alzheimer’s, hence referral to consultant and formal diagnosis in March. (Suspected Frontotemporal)
His mum had early onset dementia and his maternal uncles also. His sisters condition (she died last month) is related to early onset dementia. The genetic factor is very strong hence the referral for an mri.
With hindsight, I now know the signs were there probably 4 or 5 years ago, little things.
He just couldn’t do the job he had for for years very successfully, and took time out in covid. It was financially horrendous but we survived with help from my parents.
Last summer he took a job as a delivery driver which He did until March this year. He only managed it because the route was planned, sat nav etc. there were lots of issues with him offending people, inappropriate communication etc.
He doesn’t work now snd this is very hard for him. His mental health is hugely affected. He has had a couple of volunteer jobs in charity shops but they haven’t lasted. He has a support worker couple of times a week but otherwise is bored, lonely.
He has no inhibitions, constantly asks people for money, is vulnerable to scams etc. it’s very difficult. He’s difficult to be around. I’m not sure how much longer he will be at home because of his behaviours and memory and the stress trying to manage this with a very young family. Everything is on me now and it’s exhausting. His needs create an extra layer of stress on top of parenting by myself. My son has complex needs and high levels of support as he has autism. It’s all too much really. But I survive. I’m hoping I will just know when it is right for him to no longer live in the family home. Despite being incredibly difficult I cannot bring myself to think or accept this will happen, the loss of how I imagined my family life to be and all I hoped to do with the children as us is lost. Very painful.
Could go on and on but will stop!
Im really grateful For the opportunity to know others in similar situations as it’s incredibly isolating and frightening. I am so scared about the next stages and managing by myself.
Happy to chat anytime.

 

[Sarahkb]

In terms of deterioration, the doctor has described my husbands as aggressive, in that he is declining quickly. I notice things every month. Memory is getting worse very quickly, most recently his language skills are affected. He cannot recall the names for things in conversation, struggles with words for things. Repeats himself a lot. He gets lost absolutely no sense of direction.
Everyone is different I believe. But for us we do not have time in our side, hence why my priority has been securing emotional and therapeutic support for the children.

 

[Grannie G]

my priority has been securing emotional and therapeutic support for the children.

Don`t forget your own needs @Sarahkb . With dependent children you need to make your own needs a priority too. Easier said than done I know but please bear it in mind.

From what I read on the forum support for younger people with dementia and their carers draws the short straw but if you do not ask you will not get.

Find support near you

Use our dementia directory to find local support services for people with dementia and their carers in England, Wales and Northern Ireland.

www.alzheimers.org.uk

Your local dementia support services

We are here to help. Find out more about the type of dementia support services available in your area.

www.alzheimers.org.uk

I`ve no idea if you will get anything from this but it might be worth a try.

 

[Sarahkb]

Thank you. Really kind. There really isn’t anything much for his age. Despite his cognitive decline he is still very much identifying as a 49 year old which is the hardest part for him, it’s very lonely for him. Lots of things are for carers too, as in I go with him which I just can’t do. He needs something independent of me, I need a break plus I work and have family life to manage. There really is a big gap in provision.

 

[SR70]

In terms of deterioration, the doctor has described my husbands as aggressive, in that he is declining quickly. I notice things every month. Memory is getting worse very quickly, most recently his language skills are affected. He cannot recall the names for things in conversation, struggles with words for things. Repeats himself a lot. He gets lost absolutely no sense of direction.
Everyone is different I believe. But for us we do not have time in our side, hence why my priority has been securing emotional and therapeutic support for the children.

So sorry to hear. I’ve noticed my husbands memory and ability to navigate his way through previous simple tasks (filling in forms, coordinating meetings) seems to be getting worse. It’s frightening. He has had a series of neuro psychology appointments too which we get the results of next week.
Sometimes I wonder if I’m imagining it’s getting worse or it really is. I feel like I’m pretty much going everything as far as looking after the kids and the house. He goes to work, I hold my breath literally hoping he’ll be ok and able to keep going there.

 

[Sarahkb]

So sorry to hear. I’ve noticed my husbands memory and ability to navigate his way through previous simple tasks (filling in forms, coordinating meetings) seems to be getting worse. It’s frightening. He has had a series of neuro psychology appointments too which we get the results of next week.
Sometimes I wonder if I’m imagining it’s getting worse or it really is. I feel like I’m pretty much going everything as far as looking after the kids and the house. He goes to work, I hold my breath literally hoping he’ll be ok and able to keep going there.

I hope your results go ok. When my husband had to stop work that’s when it became incredibly hard, for him but also me. In every way. I do literally everything now too. He hoovers all the time, washes up all the time. Obsessive. Something to do.

 

[annieka 56]

Hi - I’m new to this group. My 54 year old husband (we’ve been married 28 years) has recently been diagnosed with Alzheimer’s. He’s working although as a result of worrying about his ongoing memory lapses (and subsequently being diagnosed) I unearthed unpaid bills, debts etc which I knew nothing about. We will most prob need to sell our house to get by. (2 kids 15 and 20 who I haven’t told yet about their dads diagnosis - how do I do this?!). I’m also looking to increase my p/t work to full time work now to help us out of this mountain of a mess.
I am so sad and angry all at the same time plus worry beyond anything. (And feel guilty for these feelings too) I cry at some point every day for what life has thrown at us (I went through breast cancer when I was 34 too). I’m a positive person but this is testing me beyond anything and I feel like I’ve been robbed of my life (things were always good in all ways before now) and the future I had always imagined I’d had has been taken away. Getting through breast cancer made me resilient and strong in all ways, but this is making me crumble.
What I suppose I’m after in this group is to hear from others about how they have /are coping, especially people who are dealing with a young partner. I also wonder how many years before he becomes unable to work/be left without care? I know it’s hard to say and everyone is different but I’m just wondering if I’ll be able to work for years or he’ll need care around the clock before I know it? Sorry - but lots of questions but I’m so worried and trying to process it all, whilst juggling everything and everyone.
Thankyou x