Husband age 49 just diagnosed

[Sarahkb]

Hi I am new here and am just reaching out for some advice and support. My husband age 49 has just been diagnosed with early onset dementia, frontotemporal. We have 2 children age 10 and 6. My 10 year old has additional needs including autism and requires continual support. My husband has deteriorated rapidly. He can no longer work, manage money, struggles with basic parenting tasks. He has developed a scratch card habit, has started being obsessed with money including taking money out of my purse. I have had to take his name of bank accounts. He was a mortgage adviser so this is all very heartbreaking.
He has become very aggressive and angry towards me which I am struggling to cope with. Not only the emotional impact on me but obviously my children. Our family life has been turned upside down, they hear their dad shouting, threatening to leave etc. school are providing support for them to manage their feelings etc but I am so worried. I have tried to explain and they know daddy has dementia. I feel that I am not meeting anyones needs, my children or my husbands. It feels impossible to manage my sons additional needs and my husbands and I don’t know how much longer I can cope or have home life like it is for the children.
Just wondered if there was anyone else with young children like me as I’m Struggling to meet people in my situation. Thank you

 

[Grannie G]

Hello @Sarahkb Welcome.

This is a tragedy for you and I`m so sorry.

There are people on the forum who either have young onset dementia or care for someone with young onset dementia and I hope they will offer support.

All I can say is ask for help. Ask Social Services, Adult Social Services and you doctors for referrals to the right people. You cannot continue indefinitely like this may need to make tough decisions.

Please contact the dementia helpline;

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

and try to find what local support is available for you.

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

 

[Izzy]

Welcome to the forum @Sarahkb.

I’m so sorry to read about your situation. How incredibly sad that your husband has been diagnosed at such a young age.

I can understand how worried you must be, not least about your young children. I agree with @Grannie G that it might be good for you to talk with someone on the Dementia Connect Support Line. It might also help to have a look at this link regarding children and dementia.

How children and young people respond when a person has dementia

Children and young people can respond in a number of different ways when someone close to them has dementia. We look at common reactions and worries of children and young people, as well as signs of distress.

www.alzheimers.org.uk

 

[Sarahkb]

thank you so much for your replies and the links. I will call the helpline too.

 

[update2020]

thank you so much for your replies and the links. I will call the helpline too.

It’s so sad. My husband was similar but my children were ten years older which helped a lot. It’s a very tough road but I think the key thing is to reach out and get as much help as you can. You shouldn’t look after him on your own, and I would always put the children first. So much love and hugs.

There may be a local carers’ centre. I found them the most useful source of advice and support of anyone. There are also a few care providers that specialise in young onset. It took me many years - over a decade in fact - to find them but they were brilliant. I cannot recommend on here but could in a direct message I think.

 

[HardToLetGo]

It’s so sad. My husband was similar but my children were ten years older which helped a lot. It’s a very tough road but I think the key thing is to reach out and get as much help as you can. You shouldn’t look after him on your own, and I would always put the children first. So much love and hugs.

There may be a local carers’ centre. I found them the most useful source of advice and support of anyone. There are also a few care providers that specialise in young onset. It took me many years - over a decade in fact - to find them but they were brilliant. I cannot recommend on here but could in a direct message I think.

thank you so much for your replies and the links. I will call the helpline too.

Hi Sarah nothing useful to advise just wanted to send support, the community here are a life line when things are hard, glad you found them. Admiral nurse helpline was another lifeline in our situation. So sorry this has happened to your family.

 

[Sarahkb]

It’s so sad. My husband was similar but my children were ten years older which helped a lot. It’s a very tough road but I think the key thing is to reach out and get as much help as you can. You shouldn’t look after him on your own, and I would always put the children first. So much love and hugs.

There may be a local carers’ centre. I found them the most useful source of advice and support of anyone. There are also a few care providers that specialise in young onset. It took me many years - over a decade in fact - to find them but they were brilliant. I cannot recommend on here but could in a direct message I think.

Thank you so much for your reply. It makes me feel less alone. I’m not sure how you direct message that would be great though thank you. Everything seems for the elderly and I’m dreading him going to a home that without wanting to cause any offence, carers for our parents age group. I’m only just working out how to post but look for direct messaging!

 

[update2020]

Thank you so much for your reply. It makes me feel less alone. I’m not sure how you direct message that would be great though thank you. Everything seems for the elderly and I’m dreading him going to a home that without wanting to cause any offence, carers for our parents age group. I’m only just working out how to post but look for direct messaging!

I’ve just sent you a direct message. Hope that you get it.

 

[jaymor]

Hi and welcome to the forum @Sarahkb .

So sad that your husband has been diagnosed so young. When it comes to care homes, try not too worry about him being with older people. Care homes are there to look after the person with the level of care they need not their age. I’m sure your husband will not be aware of age if he does require residential care.

 

[canary]

You can get care homes that cater specifically for younger people, but they are few and far between and they tend not to be able to meet the needs of people with advanced dementia or challenging behaviour. By the time they reach that stage, though, they are not so aware of their surroundings and the age gap is not so important. Its the behaviour that you have to go on, not the age.

 

[update2020]

You can get care homes that cater specifically for younger people, but they are few and far between and they tend not to be able to meet the needs of people with advanced dementia or challenging behaviour. By the time they reach that stage, though, they are not so aware of their surroundings and the age gap is not so important. Its the behaviour that you have to go on, not the age.

I disagree, quite strongly.

I think throughout ‘the journey’ it’s really helpful to have specialist care for younger onset. One size doesn’t fit all., except perhaps at the very very end. But it can take a long time to get there.

Also younger, physically fit but agitated people can be a risk to older frailer people.

I really think that we need to fight for better and more appropriate care for younger onset (that does not rely only on medical sedation). There are some people who provide this (including for the so called challenging behaviour) - sadly few and far between indeed - and I have passed on some of my specific knowledge to Sarah.

 

[canary]

I disagree, quite strongly.

I think throughout ‘the journey’ it’s really helpful to have specialist care for younger onset. One size doesn’t fit all., except perhaps at the very very end. But it can take a long time to get there.

Also younger, physically fit but agitated people can be a risk to older frailer people.

I really think that we need to fight for better and more appropriate care for younger onset (that does not rely only on medical sedation). There are some people who provide this (including for the so called challenging behaviour) - sadly few and far between indeed - and I have passed on some of my specific knowledge to Sarah.

I think that possibly I wasnt clear. When I said "by the time they get to that stage" I didnt mean "by the time they need a care home" I meant "by the time they reach the stage of advanced dementia". As I said - it depends on the behaviour, rather than age.
My OH is young onset and has had respite in a couple of care homes, so I do have experience of the problems.

 

[Jaded'n'faded]

Thank you so much for your reply. It makes me feel less alone. I’m not sure how you direct message that would be great though thank you. Everything seems for the elderly and I’m dreading him going to a home that without wanting to cause any offence, carers for our parents age group. I’m only just working out how to post but look for direct messaging!

I think you are going to be up against it because your husband is very young to be diagnosed. It's a numbers game to an extent - have a look at this page:

Prevalence and incidence - Dementia Statistics Hub

In this section, you will find information about the numbers of people with dementia in the UK and globally

www.dementiastatistics.org

As you can see, there are over 42,000 people under-65s with dementia but scroll down to the graph where it shows the numbers of people at particular ages. The lowest age they actually give is 55-59 and the numbers are tiny. Your husband is only 49 so that makes him very rare...

Obviously far more people with dementia are elderly so facilities are generally aimed at that age group. If you want to get in touch with others his age I think your best bet may be to contact the specialist dementia societies as they may have more younger members.

Rare Dementia Support

www.raredementiasupport.org

This next one is an American site but looks useful:

The Association for Frontotemporal Degeneration

If you or a loved one are facing FTD, we are with you every step of the way—with reliable information, valuable resources, and support from others who understand.

www.theaftd.org

...and of course, members here will always offer support.

 

[update2020]

I think that possibly I wasnt clear. When I said "by the time they get to that stage" I didnt mean "by the time they need a care home" I meant "by the time they reach the stage of advanced dementia". As I said - it depends on the behaviour, rather than age.
My OH is young onset and has had respite in a couple of care homes, so I do have experience of the problems.

Oh I see. (((sorry)))

Judging when someone needs a care home is going to be different in every case I suspect because every family’s needs will be different. My OH was only in a CH for a couple of years or so after c. 12 years at home (65 when he died) but others similar clearly needed residential care for longer presumably because living at home was not practical. It was wonderful to see how the CH made a new family home for them. Truly impressive/humbling place.

 

[canary]

No worries @update2020

My biggest problems with trying to find somewhere that will accept OH for respite are 1) - his age, as most places will not accept anyone under 65 yrs old and 2) he does not have a diagnosis.

The first place that OH went to was a home that specialised in things like Traumatic Brain Injury, Parkinsons, Huntingdons and Early Onset Dementia. They decided that his symptoms fitted in extremely well with the type of residents that they accepted and would accept him even without a diagnosis. Unfortunately, the building subsequently developed structural faults and had to be closed. I couldnt find anywhere else and after a couple of years I reached carer breakdown and as it was an emergency a care home made an exception and accepted him even though he was younger than the 65 that their policy stipulated. By then though, although he was young, he was no longer fit and seemed much more like the frail elderly residents who were there, so the age gap didnt matter. Im now searching for a nursing home that will accept him as he has declined on the physical side as well as cognitively, but it is hard in a young person with no diagnosis.

I know what you mean about CHs making a new family for them. Mum was in a dedicated dementia home where they accepted all sorts - people with challenging behaviour and also a couple of young ones. The carers were wonderful and as I got to know the other residents and their relatives too it became like one large extended family. I truly hope that once OH needs permeant residential care I can find one like that too.

 

[Sarahkb]

Thank you everyone for sharing your experiences and knowledge.

 

[Annier68]

My children are 8 and 12. I’m happy to chat. This was us prior to diagnosis. The fact none of us were coping made everything speed up with diagnosis. Donepezil 10mg really helped and mirtazapine supported with his anger and frustration. It’s not easy but much better. Have you told doctor/consultant how bad it is daily. Xx

 

[Angel 4]

Hi I am new here and am just reaching out for some advice and support. My husband age 49 has just been diagnosed with early onset dementia, frontotemporal. We have 2 children age 10 and 6. My 10 year old has additional needs including autism and requires continual support. My husband has deteriorated rapidly. He can no longer work, manage money, struggles with basic parenting tasks. He has developed a scratch card habit, has started being obsessed with money including taking money out of my purse. I have had to take his name of bank accounts. He was a mortgage adviser so this is all very heartbreaking.
He has become very aggressive and angry towards me which I am struggling to cope with. Not only the emotional impact on me but obviously my children. Our family life has been turned upside down, they hear their dad shouting, threatening to leave etc. school are providing support for them to manage their feelings etc but I am so worried. I have tried to explain and they know daddy has dementia. I feel that I am not meeting anyones needs, my children or my husbands. It feels impossible to manage my sons additional needs and my husbands and I don’t know how much longer I can cope or have home life like it is for the children.
Just wondered if there was anyone else with young children like me as I’m Struggling to meet people in my situation. Thank you

Hello, I just wanted to say hi, my husband has recently been diagnosed with Familial Alzheimer’s disease he is 52. We have 3 children 17,15 & 11. It’s so so hard, he is in the early stages and still working but life is becoming increasingly difficult. He has bad anxiety which is causing problems with his relationships with our teens. I have taken some time off work as I was finding I just couldn’t concentrate. I feel so alone in all this so happy to chat anytime xx

 

[Sarahkb]

Hi thank you for your message. My husbands is hereditary too. I would love to chat anytime, it’s nice to make contact with others with your children. It’s my biggest worry at the moment.

 

[Sarahkb]

My children are 8 and 12. I’m happy to chat. This was us prior to diagnosis. The fact none of us were coping made everything speed up with diagnosis. Donepezil 10mg really helped and mirtazapine supported with his anger and frustration. It’s not easy but much better. Have you told doctor/consultant how bad it is daily. Xx

Thank you for your message. Yes happy to chat too having young children is so hard and worrying. My husband takes medication but it’s not really made a difference.