Husband age 49 just diagnosed

[Sarahkb]

Thank you so much. I’m really grateful for the message. Things have escalated, we had the community police knock at the weekend. Lots of complaints and concerns from local businesses in the town. Plus he was caught trying to take chocolate in another local store, got verbally aggressive. Is now banned.
His wandering around shops, asking people for ‘rewards’ or ‘prizes’ for doing things is obsessive.
The community mental health worker is coming out this week he has been referred to safeguarding. Social services did a needs assessment in May, want to update it as he has deteriorated but struggling to find provision. He has a support worker 1 hour a day 3 days week as interim measure.
I’m just worried he needs somewhere to go where he can be useful with a purpose, safe etc. just nothing out there because of the support he requires.

 

[Sarahkb]

hi @Sarahkb ...ive not been on this forum for a while but have found it really useful and informative...im in a similar situation to you as my 49yr old female partner has recently been diagnosed with FTD, and we have 2 kids (11 and 20 year old)...i work for a bank and have done a lot of research in this into financial support and other areas of support...all kept it in a spreadsheet which im happy to share...hopefully you have managed to get an answer on critical illness...my partner also has similar cover and from what i understand it can be invested in paying off your mortgage and the one asset they cant touch is the house...happy to help in any other way i can on this...

Thank you so much for this kind offer of help. I would really appreciate it. Money is not my thing at all, my husband used to manage all the insurances etc. I have submitted a claim for critical illness so see what they come back with. Anything we get will go towards paying the mortgage. I just want to make sure the payout isn’t seen as income/asserts then in turn, the house of mortgage free isn’t an asset. Might be best keeping a small mortgage on it. Goodness knows!
Thank you again for your offer of help.

 

[Shedrech]

hello @Aprilshowers
just to offer a warm welcome to DTP
now you've joined out supportive community, I hope you'll keep posting

 

[Violet Jane]

@Sarahkb, I'm so dreadfully sorry to read this. The only 'silver lining' that I can see is that at last your husband's needs are being taken seriously.

Is the critical illness pay-out not in the form of an income rather than a lump sum?

Can you speak to the support line to get advice about your financial situation?

 

[Violet Jane]

Just to add: has medication been considered for your husband? As you say, his behaviour is obsessive.

 

[Shedrech]

hi @Sarahkb
something on this site may be of help ... I appreciate that the title is 'later life' but wonder whether they will be conversant with the issues you're facing

The Society of Later Life Advisers (SOLLA)

SOLLA helps people and their families in finding trusted accredited financial advisers who understand financial needs in later life. A well-qualified financial adviser who is also somebody who understands the plans you need to make for your retirement years.

societyoflaterlifeadvisers.co.uk

 

[Sarahkb]

Thank you everyone. That link looks helpful, I am planning to ring the support line. Medication wise, apparently memantine which he is on is the best option.

 

[grrth1314]

Thank you so much for this kind offer of help. I would really appreciate it. Money is not my thing at all, my husband used to manage all the insurances etc. I have submitted a claim for critical illness so see what they come back with. Anything we get will go towards paying the mortgage. I just want to make sure the payout isn’t seen as income/asserts then in turn, the house of mortgage free isn’t an asset. Might be best keeping a small mortgage on it. Goodness knows!
Thank you again for your offer of help.

anytime...i have just spoken to an admiral nurse today around this as well...as others have mentioned do reach out to the council to start the process around getting a care needs assessment, which will look into things like respite care, social care, support for your children, etc...on the financial aspect, hopefully you have already started the process of claiming for employement support allowance and personal independence payment...max of £117 a week for ESA, £154 for PIP if you get the enhanced rate for both and the mobility part as well...also speak to the council about council tax discount of at least 25%...my situation is that there is no benefit for me to give up work as i can pay for more hours care than i could give myself but for your situation you may be entitled to others such as carers allowance of £70 a week but only if you dont earn more than £132 a week...if you are a lowish income you may also be entitled to a disability premium of up to approx £80ish a week...a good tool to use would be https://www.entitledto.co.uk/benefits-calculator/ which will show whether you are entitled to these and others such as housing benefit...once you have your care needs assessment, you will hopefully be assigned a personal budget for your partner...councils can offer grants of up to £30k for home adapations as well, which you will usually receive if you are already receiving means tested benefits...as part of the needs assessment they will do a financial assessment to determine if he is able to contribute for any of his care so please also ensure you have separate accounts so none of your income can be use as part of this assessment so you can use yours for you and your family...essentially as long as any income he has is used for his needs, whether mobile phones, food, care etc then thats ok so having separate accounts is easier to identify that...speak to pathwaytodementia.org as they are very good for specialist advice, but from what i know as long as critical illness cover can be used to pay off the mtge as that for his benefit and is the one asset they cant touch...to assist with that it would make sense to look at your deeds and see if you are joint tenants or tenants in common...in these circumstances most solicitors will advise to be tenants in common as protects the house assets...also consider speaking to a welfare rights officer as they can help guide you through the complexity of the benefits situation...
one other thing to consider is beneficary names on any pensions your partner has...and to have wills drafted so that you can ensure your and his assets go to those you wish them to...one worry ive had in this situation is what would happen if something to happened when my PWD is either seriously ill or has already passed away...
lastly, ive attached my spreadsheet which has some really good websites to help kids process whats happening to their dad and to you...sometimes in these situations they will feel a natural inclination to cling to you, sometimes to test that you also arent going to be lost to something similar as well...v.hard topic, but if my childline counselling training has taught me anything, it is that they still need you as their parent but will learn how to handle this through how they observe grown ups dealing with this...so ive shown my kids its good to cry but have tried to ensure they know my role hasnt changed, and that i am still their parent and that they dont need to care for me...

ive probably rambled on a bit and if there are parts of this you would like more clarity, im happy to help...more than anything, please ensure you care for yourself as well through this awful situation...

 

[grrth1314]

Dementia Australia - Dementia in My family

dementiainmyfamily.org.au

Kids - AFTD Kids and Teens

Home Page Parents Teens

www.aftdkidsandteens.org

Dementia Australia - Dementia in My family

Teens - AFTD Kids and Teens

Home Page Parents Kids

www.aftdkidsandteens.org

 

[Sarahkb]

Oh my. I am so grateful for all of this information. It’s really kind of you. Thank you for sharing and for all your information and advice in your post. Really helpful. I plan to read through everything and digest it all properly. I hope others find it really useful too.
I have the community mental health nurse visiting tomorrow with the psychiatrist from the team. Safeguarding concerns for him and us becoming worrying.
I just wish more than anything I could make him how he was, he says with such belief that I don’t care for him, never have and constantly says he’s had enough of me and wants to divorce, so cold, no empathy or concern for us anymore. Just want my family back. That’s the hardest bit. And knowing what the children will go through.
While managing all of the above practical stuff too!
I hope you are coping ok and your children are too.

 

[Violet Jane]

@Sarahkb, it's probably of little comfort but many posters have been on the receiving end of the kind of hurtful comments that your husband makes. That kind of behaviour is, sadly, far from uncommon.

I hope that the visit tomorrow is helpful. Don't forget to ask for support for you and your children as well. You are all suffering.

 

[canary]

@Sarahkb - Im one of those who had similar things said to me by my OH

In a lucid moment he told me that there was a "blockage in his emotions" and couldnt access them anymore, so people around (especially me) seemed cold and distant. To me of course, it seemed the other way around.
This insight only lasted a few minutes, but it told me that it wasnt what he had always felt. It didnt take the hurt of his words away, but it did remove the doubt about whether he had ever loved me, whatever he said.

This has gone now and he is more accepting of care, so he easier to care for, but it has left a sort of emptiness.

 

[grrth1314]

Oh my. I am so grateful for all of this information. It’s really kind of you. Thank you for sharing and for all your information and advice in your post. Really helpful. I plan to read through everything and digest it all properly. I hope others find it really useful too.
I have the community mental health nurse visiting tomorrow with the psychiatrist from the team. Safeguarding concerns for him and us becoming worrying.
I just wish more than anything I could make him how he was, he says with such belief that I don’t care for him, never have and constantly says he’s had enough of me and wants to divorce, so cold, no empathy or concern for us anymore. Just want my family back. That’s the hardest bit. And knowing what the children will go through.
While managing all of the above practical stuff too!
I hope you are coping ok and your children are too.

hi @Sarahkb, I hope the visit from the mental health nurse was useful...others on this site will be better informed than me, given I've only started on this journey, but unlike others with terminal illnesses, its my view that I'm having to be more proactive in seeking support... speak to the admiral nurses as there expertise is really good and can tell you all the types of support that's available...hopefully at some point you will get a social worker assigned to help coordinate...at present my partners speech is deteriorating so I'm speaking to her gp to get some speech therapy...

we're presently lucky in that my partner is not being aggressive and I'm trying to keep things very light to keep it that way, even when I'm crying inside when I know she is not acting the same way...I really feel for you, as My uncle has parkinsons diseas, a related condition, and he has been similar, accusing of affairs, not caring etc and it's awful...I'm the same as you in that I want the kids to come through as unscathed as possible.. my partner and both my parents suffered a traumatic loss of a parent when you and I have seen the impact it can have but also some of the tools to use to help them...I'm sure you already know but hopefully your children understand its the disease and not him doing this and that they have opportunities to vent their frustration...I've also found both my sons schools have been really supportive by having regular check ins and being a little more flexible on homework etc and I've talked to them about sundowners and why they may need to be absent from school at that point to get the best times with his mum...

it's just so awful for you and at such a young age...similar to me and i'm the same in that I wish It could be different but if my unfortunate experience of seeing too much familial trauma has taught me anything its allowed me go decide the best thing I can do now is to give my kids the best start in life

 

[Lisa-marie]

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

I am in tears reading your story as my story is very similar.. this is the first time for me reaching out for help as I too feel very lonely in my situation. My husband was 55 when he lost his job due to short term memory loss. It has taken over a year just to get an MRI scan and me doing a lot of calling begging for help! He had his scan nearly 2 months ago and they still hadn’t got back to us with results. I see how much he is deteriorating very quickly and desperate to get him help. My teenage children see what is happening and are trying to help him. But as you say they can get angry when they don’t understand. He hides things and blames the children of taking the items.
I’m sure you’ll agree it’s very soul destroying and the feeling of helplessness can weigh you down so much that the pain is unbearable sometimes to cope with.
What I find upsetting is I feel there’s not much help for my children, they’re strong but I feel they should have professional help in how to deal with this. As I feel their love for their father will diminish as his condition worsens. I finally got a call today with his appointment for next week. I shall be going as a family unit as I feel my children should be there to ask questions as well as myself.
You are not alone and believe me you are strong and brave to get this far.
I hope you have had better days since your post on the forum ?

 

[grrth1314]

I am in tears reading your story as my story is very similar.. this is the first time for me reaching out for help as I too feel very lonely in my situation. My husband was 55 when he lost his job due to short term memory loss. It has taken over a year just to get an MRI scan and me doing a lot of calling begging for help! He had his scan nearly 2 months ago and they still hadn’t got back to us with results. I see how much he is deteriorating very quickly and desperate to get him help. My teenage children see what is happening and are trying to help him. But as you say they can get angry when they don’t understand. He hides things and blames the children of taking the items.
I’m sure you’ll agree it’s very soul destroying and the feeling of helplessness can weigh you down so much that the pain is unbearable sometimes to cope with.
What I find upsetting is I feel there’s not much help for my children, they’re strong but I feel they should have professional help in how to deal with this. As I feel their love for their father will diminish as his condition worsens. I finally got a call today with his appointment for next week. I shall be going as a family unit as I feel my children should be there to ask questions as well as myself.
You are not alone and believe me you are strong and brave to get this far.
I hope you have had better days since your post on the forum ?

please reach out to young minds on getting the kids some help...they have trained counsellors and child psychologists...really helpful when I

 

[Izzy]

Welcome to the forum @Lisa-marie.

I’m sorry to read of your situation but glad you have found this forum. You’ll get lots of understanding and support here.

The Young Minds service has been mentioned by @grrth1314. Here’s the link -

YoungMinds | Mental Health Charity For Children And Young People

YoungMinds are a mental health charity for children, young people and their parents, making sure all young people can get the mental health support they need.

www.youngminds.org.uk

 

[Sarahkb]

I am in tears reading your story as my story is very similar.. this is the first time for me reaching out for help as I too feel very lonely in my situation. My husband was 55 when he lost his job due to short term memory loss. It has taken over a year just to get an MRI scan and me doing a lot of calling begging for help! He had his scan nearly 2 months ago and they still hadn’t got back to us with results. I see how much he is deteriorating very quickly and desperate to get him help. My teenage children see what is happening and are trying to help him. But as you say they can get angry when they don’t understand. He hides things and blames the children of taking the items.
I’m sure you’ll agree it’s very soul destroying and the feeling of helplessness can weigh you down so much that the pain is unbearable sometimes to cope with.
What I find upsetting is I feel there’s not much help for my children, they’re strong but I feel they should have professional help in how to deal with this. As I feel their love for their father will diminish as his condition worsens. I finally got a call today with his appointment for next week. I shall be going as a family unit as I feel my children should be there to ask questions as well as myself.
You are not alone and believe me you are strong and brave to get this far.
I hope you have had better days since your post on the forum ?

Thank you. This forum is really helpful in knowing that it’s not just me coping with this. I hope you feel Less isolated too now. I hope your appt goes well. The waiting is hard. We have all the services in place, just no provision suitable lots of meetings it’s draining.

 

[Sarahkb]

hi @Sarahkb, I hope the visit from the mental health nurse was useful...others on this site will be better informed than me, given I've only started on this journey, but unlike others with terminal illnesses, its my view that I'm having to be more proactive in seeking support... speak to the admiral nurses as there expertise is really good and can tell you all the types of support that's available...hopefully at some point you will get a social worker assigned to help coordinate...at present my partners speech is deteriorating so I'm speaking to her gp to get some speech therapy...

we're presently lucky in that my partner is not being aggressive and I'm trying to keep things very light to keep it that way, even when I'm crying inside when I know she is not acting the same way...I really feel for you, as My uncle has parkinsons diseas, a related condition, and he has been similar, accusing of affairs, not caring etc and it's awful...I'm the same as you in that I want the kids to come through as unscathed as possible.. my partner and both my parents suffered a traumatic loss of a parent when you and I have seen the impact it can have but also some of the tools to use to help them...I'm sure you already know but hopefully your children understand its the disease and not him doing this and that they have opportunities to vent their frustration...I've also found both my sons schools have been really supportive by having regular check ins and being a little more flexible on homework etc and I've talked to them about sundowners and why they may need to be absent from school at that point to get the best times with his mum...

it's just so awful for you and at such a young age...similar to me and i'm the same in that I wish It could be different but if my unfortunate experience of seeing too much familial trauma has taught me anything its allowed me go decide the best thing I can do now is to give my kids the best start in life

Thank you. I agree, my main concern is protecting the children and ensuring that they have as much of their childhood as possible, a hard balancing act between keeping daddy at home as long as possible against it being a lot easier etc just the 3 of us.
We have a social worker. Well, duty worker changes all the time. Needs assessment done and they are going to update it. But they couldn’t deliver the provision in the current one admin providers so all very frustrating.
My children are waiting to start creative therapy with the local hospice after our GP referred us as a priority. Hopefully this will be helpful.

 

[Brownstogether]

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.

Hi,

My husband is 54 years old now, diagnosed in 2020 with Alzheimer’s - I’m looking for respite ideally in a younger environment setting - would you be willing to share any contacts/ideas -

Many thanks

Katy