My husband has dementia

Mt61 From my 10 years experience as a Benefits Advisor for Age Concern (as was) I can tell you that my experience of people with as many problems and difficulties as your friend, rejection was quite common.

I came to the conclusion that the relatively low grade clerks who deal with these forms, scoring them like credit card applications, are just so unable to cope with, and, I suspect, are suspicious of these claimants.

The other thing to remember is that AA is not granted on the basis of your health issues, but you disability issues. I had clients with no medical conditions diagnosed, who got AA because they were so weak and frail, they needed help because they could do nothing for themselves. Others with more conditions were turned down because they were still managing pretty well - and of course not all disabilities are visible. I had one lovely sunny lady, who seen out withr DH seemed fit and well, but she had Meunieres disease and sometimes was reduced to crawling round the floor because her vertigo was so bad and once fell against her lit cooker, setting her wig on fire, she had alopaecia, and starting a house fire.

The AA questionnaire also requires cetain words to be used and certain concepts repeated that unless you know the rules, makes success with the form a problem. Never fill in a form with out help and advice from Age UK or Citizen's Advice or other similar organisation.

Madmeg

My mum had it, it developed after my DD died and he warned me she was "losing it". I didn't know what he meant at the time.

Her main issue was confusion. She confused day with night and was spotted by a couple driving home late who saw her waiting for a bus at 3 a.m. (she was going to the hairdressers!). The GP was called and he referred her to hospital for six weeks observation. She continued to be confused and the consultant said she would not be safe at home. They also didn't think she would cope with coming to live with me either, so it was a care home. I sold her house to pay the fees.

After a shaky start she settled well at the home, made a couple of friends, loved the staff, and really didn't deteriorate much more. She knew who I was, also my DH and her GDs. When I told her the eldest GD was getting married she said "I'll have to get a new hat". In fact, I saw a new side of her in the Home - I'd always regarded her as quite a boring lady and she became quite chatty and even amusing. She also suddenly asked me if I had had to sell her house to pay the fees!

Sadly, she died suddenly of an unrelated health issue and I was not heart-broken because she had been spared the more dreadful progression of the disease. I was not aware of her having any particular drugs to slow it down. She did ask me if I had seen her Mam and Dad recently (they had died decades earlier) and I just said "no, not for a few weeks", which she was happy with.

I second the advice to try the website Talking Point. You will find lots of lovely people who know what you are going through and will give advice and support.

Just to say that I did not find it to be as stressful as some have found. Both my DD's mother and sister had dementia and now one of his nieces and nephews (children of different siblings of DDs) so it's probably likely that I will get it.

It's a different dynamic of course with a lifelong partner, far more personal and emotional I would guess.

Take care of yourself too.

That was brilliant for your mum & the family that the home your mum went into was excellent care.
We had rubbish care for my dad, three different homes. We thought he was neglected & decided to bring him home & nurse him ourselves, along with a carer Am & Pm.

Should he be driving? What if he kills somebody & you knew he wasn’t fit!

Juniper it appears we are in the same boat. DH diognosed a year ago but the signs were there long before that. He has just had a driving assessment and passed! Can't believe it , if the assessors saw his confusion and his difficult moods they might not have been so kind. I drive but don't like it!
You hit the nail on the head in your first scentance - it is a very lonely place to be . Family and friends do not see what I see! I too am afraid of the future and if I am honest I am not sure I am strong enough to cope !? We have been awarded Attendance Allowance and I have POA. Its like living with a man child , I am having to think for him
Belting hot day today , we are just about to leave for a family BBQ and DH is wearing a thick wooly jumper that he refuses to take off!! I have done my any years of volunteering with the Alzheimer's Society and thought I had this in the bag - how wrong I was ! Living with it on a daily basis is getting me very stressed . As for passing his driving assessment,! When we do go out I regularly have to direct him even on familiar routes. His assessment would go well because he was following the assessors instructions. I fear if he becomes disorientated when driving that will panic him and an accident is inevitable. He is now insisting on driving and who can blame him. Alzheimer's is changing the balance of our relationship and I feel I am not as patient as I should be. Don't be alone with this Juniper - I really do understand. Private message me if you need to off load.💐💐💐

kittylester

Do you know about Talking Point, an on line forum for Carer's - apparently, it's very good.

forum.alzheimers.org.uk/

I absolutely agree with that. Talking Point got me through when my mum had dementia. The Alzheimers website as a whole is a mine of support and information. Your GP practice should know what is around locally too. Good luck and try to take care of yourself too. Xx

the first form I filled in for my OH ..he was turned down....the next one a lady from DWP helped us fill it in , she said you have to make it the worst scenario , as if it happens every day....it usually does,,,this time he did get it

to get 25% off council tax, you can download a form from your council website or phone for one , hand it into your GP he will tick the boxes,,,it's to say he has severe mental impairment
then the GP will sign it , best of luck

Music can be a big help. Music he knows and likes.

I went through this with my DH and you have my sympathy.
Luckygirl is right, you must also focus on yourself. I too carried on singing and getting out whenever I could.
Don’t feel guilty about looking to yourself. When you have everything in place, it’s not selfish to give yourself time and consideration.

If you don’t put a high priority on your own needs and interests, you can be dragged down.

Whiff

Any aids you may need to look after your loved one get in touch with your health authority occupational health unit ,falls unit , district and community nurse they can supply you with things you need like pressure mattress, pressure cushion,commode, wheelchair,bedrail . You should beable to contact them directly or go through your GP. But I do know it's a post code lottery how much help you can get . The dementia and Alzheimer's charity will help guide you to all the help you need.

My mom loved flowers and music so I always had both in her room. Smells of things your loved one wore when younger can trigger a positive reaction.

Someone I knew years ago their husband had Alzheimer's and was in a home and stopped showering and washing but a relative went to visit him and had used old spice shower gel it triggered a memory so they brought him some and he showered and shaved everyday with help using old spice shower and aftershave. The past is real to them so talking about it you can get your love one back for a while .

I think the saddest part of my mom's dementia was when she looked at their wedding photo and asked who that man was. But the day she was dieing she spent most of the day asleep but she suddenly woke and shouted out dad's name and fell back to sleep .

I used to hope every morning my mom had died during the night it sounds wicked but my mom would have hated what she became. When she started to forget she asked why it was happening so explained and she asked me to stop it told her I couldn't but I would look after her. Before the last 4 months mom forgot to do simple things like wash but I showed her want to do and she did it . It was very important to me that she still did things she could do . She always brushed her teeth 3 times a day so talked her through it . Many times she swallowed the toothpaste and said she had minty fresh inside and would giggle . It wasn't all doom and gloom with mom until the last 4 months and funny things did happen. She loved going out I thought she would fight me when I said she would have to have a wheelchair but she didn't. Mom was small so it was a teenagers chair we where given . She loved going to Costa for a tea the manager was Italian only in his mid 30's but he always came over to mom and she always gave him a kiss on the cheek and a cuddle . I lost those memories for a year after she died as the violence blotted them out but glad I got them back again .

My brother and me weren't brought up with money but we were rich in love and attention our parents gave us.

Everyone needs to talk about what they want before ill health happens .When I redid my will in 2020 I took out both powers of attorney my daughter and son in law are my attorneys and they know my wishes.

Unfortunately especially if you are looking after someone you need that conversation with them before things get worse . Plus make sure your loved ones know what you want for your healthcare and funeral . I know it's hard but it has to be done . Do things now and not wait .

Mt61 people have had and are being treated worse than me . But thank you . 🌹

Gosh don’t I know- helped a friend fill in a form for AA - breast cancer, lung cancer, two hip replacements, 2 knee replacements, detached bi-cep, rheumatoid arthritis (specialist reckons meds for that caused the lung cancer)- now COPD & has heart failure, yet she was knocked back. Yet some folk hardly anything, get AA.. she won’t reapply 😩

Lots of the Carers that I meet use Talking Point and say how it helps them so thank you Witzend.

kittylester

Do you know about Talking Point, an on line forum for Carer's - apparently, it's very good.

forum.alzheimers.org.uk/

Ditto to this. Much sympathy, OP. The Talking Point forum was a lifeline for me when both FIL and my mother had dementia, one after the other. Whatever you’re going through, someone else will have been there.
My user name dates from those days.

I cared for my Mum for 14 years and in later years she had Alzheimers so I do understand how difficult caring for your husband is.

I am in a similar position just now as my husband had a severe stroke in Nov and is in a wheelchair with all his right side affected. I have to do everything for him. He is depressed because he can’t do anything and that is hard for both of us. His speech is badly affected so I am asking him to repeat himself all the time so our conversations don’t feel natural.

I think just take it a day at a time, if you can get out together do so. Encourage friends or neighbours to come for coffee and join any local dementia groups even if just for a quick cup of tea to start. Take care x

It is often backdated - unlike lots of other benefits.

There is 100% reduction if the person with dementia (and attendance allowance) lives on their own.

The form to ask for (or access on line) is Sever Mental Impairment reduction form. It is only 2 sides long but needs to be signed by the GP.

The GP is not allowed to charge for it.

kittylester

The council tax reduction requires you to have, or be eligible for Attrndance Allowance.

You could get free, long term, loans of various technology via your Dementia Support Worker.

Oh do they? I really hope that that’s in place for juniper1 husband.
My dad had attendance allowance so that’s probably why. I didn’t know about it until a friend told me & I think it was back dated (CT) 😊

I’m so sorry to read this. We suspect that my father is starting to get dementia so are just starting the process. We’ve been through it before with other relatives and know how cruel it is. Lots of love to all of you on here currently looking after a loved one with it.

I am so sorry that you are facing this. You have had some excellent advice above.

I have experience of this professionally (social worker for a dementia service) and personally (my mother and my husband).

I know how challenging this feels - it is not just the practical problems but also the huge emotional toll on you watching someone you love losing their very being, losing who they are.

One of the ways I coped when my OH was in decline was to keep one activity of mine intact, and that was singing. I continued to rehearse my choir in my home, and organised care so that I could go to choral society rehearsals. It cost me money to do this - and also the challenge of dealing with my OH's feelings about having a carer.

But ..... it kept me sane. Keep something for yourself - do not make his care your whole life, even if arrangements for doing this get challenging. When, in the fullness of time, his life comes to an end you will still have something solid to grab on to and build on for the future.

Any aids you may need to look after your loved one get in touch with your health authority occupational health unit ,falls unit , district and community nurse they can supply you with things you need like pressure mattress, pressure cushion,commode, wheelchair,bedrail . You should beable to contact them directly or go through your GP. But I do know it's a post code lottery how much help you can get . The dementia and Alzheimer's charity will help guide you to all the help you need.

My mom loved flowers and music so I always had both in her room. Smells of things your loved one wore when younger can trigger a positive reaction.

Someone I knew years ago their husband had Alzheimer's and was in a home and stopped showering and washing but a relative went to visit him and had used old spice shower gel it triggered a memory so they brought him some and he showered and shaved everyday with help using old spice shower and aftershave. The past is real to them so talking about it you can get your love one back for a while .

I think the saddest part of my mom's dementia was when she looked at their wedding photo and asked who that man was. But the day she was dieing she spent most of the day asleep but she suddenly woke and shouted out dad's name and fell back to sleep .

I used to hope every morning my mom had died during the night it sounds wicked but my mom would have hated what she became. When she started to forget she asked why it was happening so explained and she asked me to stop it told her I couldn't but I would look after her. Before the last 4 months mom forgot to do simple things like wash but I showed her want to do and she did it . It was very important to me that she still did things she could do . She always brushed her teeth 3 times a day so talked her through it . Many times she swallowed the toothpaste and said she had minty fresh inside and would giggle . It wasn't all doom and gloom with mom until the last 4 months and funny things did happen. She loved going out I thought she would fight me when I said she would have to have a wheelchair but she didn't. Mom was small so it was a teenagers chair we where given . She loved going to Costa for a tea the manager was Italian only in his mid 30's but he always came over to mom and she always gave him a kiss on the cheek and a cuddle . I lost those memories for a year after she died as the violence blotted them out but glad I got them back again .

My brother and me weren't brought up with money but we were rich in love and attention our parents gave us.

Everyone needs to talk about what they want before ill health happens .When I redid my will in 2020 I took out both powers of attorney my daughter and son in law are my attorneys and they know my wishes.

Unfortunately especially if you are looking after someone you need that conversation with them before things get worse . Plus make sure your loved ones know what you want for your healthcare and funeral . I know it's hard but it has to be done . Do things now and not wait .

Mt61 people have had and are being treated worse than me . But thank you . 🌹

The council tax reduction requires you to have, or be eligible for Attrndance Allowance.

You could get free, long term, loans of various technology via your Dementia Support Worker.

Mt61

Any aids to help your husband should be vat free. If he gets to the stage where he may wander We got an alarm that you place by the bed (he had a hospital bed downstairs), if he put his legs out of bed the alarm would ring on a monitor that you would put next to your bed. £70 pounds but we got the vat knocked off. This was a god send. I used to stay with mum to give her a rest & take the portable alarm into my room.

My dad I meant to say

Any aids to help your husband should be vat free. If he gets to the stage where he may wander We got an alarm that you place by the bed (he had a hospital bed downstairs), if he put his legs out of bed the alarm would ring on a monitor that you would put next to your bed. £70 pounds but we got the vat knocked off. This was a god send. I used to stay with mum to give her a rest & take the portable alarm into my room.

You should get 25% off your council tax. You will need a letter of diagnosis - hospital letter probably. Then send to your local council tax office.

Juniper. my husband has alzheimers, going on 4th year,,,but it could be longer , he's not too bad at the moment, but nobody knows how fast it can change,.. have you got POA in place, do you have the mental health nurse visit,,we have her once a year,,,anything you might need for your home, like hand rails ,extra banister for stairs...contact the ocupational therapist...they will help. have you applied for attendance allowance, get the form and you can get someone to fill it in for you, it's quite a long form .I know how you are feeling...get as much help as you can..

My mum had it, it developed after my DD died and he warned me she was "losing it". I didn't know what he meant at the time.

Her main issue was confusion. She confused day with night and was spotted by a couple driving home late who saw her waiting for a bus at 3 a.m. (she was going to the hairdressers!). The GP was called and he referred her to hospital for six weeks observation. She continued to be confused and the consultant said she would not be safe at home. They also didn't think she would cope with coming to live with me either, so it was a care home. I sold her house to pay the fees.

After a shaky start she settled well at the home, made a couple of friends, loved the staff, and really didn't deteriorate much more. She knew who I was, also my DH and her GDs. When I told her the eldest GD was getting married she said "I'll have to get a new hat". In fact, I saw a new side of her in the Home - I'd always regarded her as quite a boring lady and she became quite chatty and even amusing. She also suddenly asked me if I had had to sell her house to pay the fees!

Sadly, she died suddenly of an unrelated health issue and I was not heart-broken because she had been spared the more dreadful progression of the disease. I was not aware of her having any particular drugs to slow it down. She did ask me if I had seen her Mam and Dad recently (they had died decades earlier) and I just said "no, not for a few weeks", which she was happy with.

I second the advice to try the website Talking Point. You will find lots of lovely people who know what you are going through and will give advice and support.

Just to say that I did not find it to be as stressful as some have found. Both my DD's mother and sister had dementia and now one of his nieces and nephews (children of different siblings of DDs) so it's probably likely that I will get it.

It's a different dynamic of course with a lifelong partner, far more personal and emotional I would guess.

Take care of yourself too.

Whiff

Tess even though my mom had cancer and dementia and I was her full time carer . I was only allowed 6 months carers allowance because I was told by the idiot on the phone my mom would get better.

When my husband was terminal in 2003 our GP said apply for DLA and carers allowance. My husband phoned up about a question and the woman on the phone said how long have they given you . 4 months to 2 years she said no point applying as they have given you years and put the phone down on him . Our McMillan nurse filled in the forms and said she had to do it will all her patients and took time away from looking after them. My husband didn't live 4 months .
I tried to get attendance allowance for my dad and my mom carers allowance for looking after him they where turned down but my dad said sod them we can manage on our own. My mother in law had someone who worked in DWP live near by so she had no trouble getting attendance allowance.

Took me 35 years to get disability benefits and only because the Brain Charity got me a solicitor pro bono and went to Pip tribunal and a support worker from the Brain Charity went with me. I didn't think I would get it . As the robots at PIP gave me zero on everything. But the tribunal gave me enhanced PIP for living and enhanced PIP for mobility indefinitely this was August 2023 and back dated until March 2022 when aged 63 finally found out what my neurological condition was and it's rare.

Unfortunately the help you have to pay for from the health authority is limited to time and what they can do. And private help is expensive.

I know when mom was living with me people who had relatives in homes it was over £1,000 a week dread to think how much it is now .

Tess sorry about your husband and it is isolating because no one understands what it's like looking after some with dementia or Alzheimer's . Only someone going through it or been through knows how it feels .

That is terrible whiff how you was treated 😩