My husband has dementia

Juniper you have already had a tough time . Unfortunately if like everyone I know who had a loved one with dementia or Alzheimer's it only gets worse.

My mom lived with me the last 18 months of her life she had dementia and cancer. But I couldn't put her into a home she was my mom. My mom died 4 months before her body did . She thought I was her mom and in her lucid moments told me she love me . Everyone I know who has a loved one with either these awful conditions had turned violent. And before anyone has a go at me I wish someone had told me how bad it would get and I could have prepared myself for what was going to happen.

My mom was violent not out of malice it was fear she would wake up not knowing who she was ,where she was or who I was . My mom had never smacked me or hurt me in anyway my whole life. And the most swear word my mom said was bloody .. I didn't know she knew some of the language she came out with. She worship the ground my husband walked on as my dad did . But the vile hateful things she said about my husband who died in 2004 aged 47 hurt me more than the physical wounds she inflicted on me.

My mom's greatest free was to wet the bed . So when she came to live will me we had a pressure mattress for the bed and she insisted on having towels under the sheet and wore a pad just a thick tena lady. Dementia took everything from my mom but she always knew when she needed the commode and never once wet or soiled herself.

I always looked after mom's skin and made sure it was well moisturiser and had the blow up boots to protect her feet and ankles . As soon as mom's skin looked thin I put a dry dressing on so it wouldn't break and moved her frequently. I am proud of the fact my mom never had a sore on her body. 2 days before she died I had my mom back for a hour and we cuddled while she sang the songs her dad had taught her. That was her last lucid time .

When looking after someone with dementia or Alzheimer's you have to decide how much you can take . My decision was to look after my mom myself . It wasn't until she died I realised how much it cost me healthwise. I was born disabled. But disabled doesn't mean incapable..

My children didn't want me to do it but I couldn't let strangers look after her . My brother couldn't face seeing mom how she became and only saw her for a short time couple of times a week.

But as awful as it got I would do it all again as she was my mom and I love her.

If you can't look after your loved and need to put them into a home don't feel guilty. It's hard work physically and mentally looking after someone and you can't rest and on call 24/7.

After mom died it took me a year to remember how she was before the dementia. I never what my daughter to go through what I did. If I do get dementia or Alzheimer's I will go into a home but I won't want my daughter to visit . I don't want her to have my memories or scars .

And those of you think I am wrong writing this you haven't had the life I have had . Or how many people I have looked after until they died . Nor having to tell their husband to stop struggling when he couldn't breath on full oxygen and we would be ok . He died few minutes later. But there is never an okay . Half of me died with my husband and haven't been whole since . Then looked after my parents and mother in law until they died.

But I couldn't not do what I did even looking after my mother in law who I hated for 40 years. She was family and I wasn't brought up to turn your back on family . But that's me .

My husband was diagnosed with Alzheimer’s around a year ago. Much is said of lots of help available, sadly not my experience. I plod on copeing as best I can . Thankfully I do not think ahead, just day by day. But I feel alone and worried about myself as I see the bleak landscape ahead. As for drugs thepat slow it down? The neurologist says she hasn’t seen any evidence and more medication means more side affects which is the norm.

I’ve seen all aspects of dementia, where personalities have completely changed.
Luckily my dad never altered from the sweet dad I knew, just withdrew from talking but always had a smile & never forgot my name, but he use to call my mum, mum. I suppose she turned into his mum.
Saddest part is that the wife/husband relationship goes & that person then becomes the caregiver.
The hardest part was that dad kind of forgot how to walk, we struggled with that aspect of the illness.
My dad loved football & music, that kept him entertained to a point.
If your husband enjoys anything like that, then keep that going for him.

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 .

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 😩

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.

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..

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.

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.

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

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.

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 . 🌹

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.

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.

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) 😊

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.

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

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.

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

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 😩

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.

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

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

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

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