My husband has dementia

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 .

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.

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.

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 .

A look at The Book Case Model of Memory might help with understanding how the disease progresses.

Poppyred

My mother regressed to childhood over a 6 year period. Didn’t recognise her own children. I don’t think it makes much difference what label you choose to call it, it’s a horrible way to end your life. I didn’t cry when she died, she had died a thousand times before then.

I agree Poppy.
Juniper a tough road you’re on, you have my sympathy, please contact one of the groups recommended above, anyone offering help, grab it. Do not say you’re ‘managing’ or let pride stop you, it will be invaluable, particularly as time goes on.

There is a difference in the treatment, medication and prognosis of different dementias. People can have more than one type. It's helpful to know which type/types your dealing with so you can get the most suitable treatment and the most appropriate care.

My mother regressed to childhood over a 6 year period. Didn’t recognise her own children. I don’t think it makes much difference what label you choose to call it, it’s a horrible way to end your life. I didn’t cry when she died, she had died a thousand times before then.

Poppyred

My mother had dementia. ‘They’ said it was vascular dementia, don’t know how they knew as until very recently MRI scans weren’t carried out. Is there a difference?? Surely symptoms are the same…..She was offered a day at a local day centre to give my father a rest but she wouldn’t go…..

Symptoms for different types of dementia do vary, at least in my experience. With Alzheimers the mind seems to unpeel like an onion, layer by layer, until the person you knew completely disappears. My grandmother had Alzheimers and I can rememeber her talking about going 'home', by which she meant her childhood home and asking for the daughter who was sitting beside her, because she could not recognise her.

I looked after and aunt and uncle, both with vascular dementia. In my uncles case he completely lost his memory, short and long, but we could have a rational conversation, as long as it was about what was around us, usually the garden at the Care home that we could see from the conservatory, or the birds flying around the garden. In his wife's case, again there was loss of memory, but she was aware of what was happening around her, even if her attempts to understand what was happening produced remarkable stories - like how the care home was owned by British Rail (it wasn't). However, even after having dementia for about 10 years and being in a Care home for 6, she always seemed to recognise me, and once ortwice called me by name, although if anyone had asked her who I was, I doubt she could have said.

I have noticed similar differences in other people with dementia, where I have known what kind they have.

Other people may disagree with me, as all our experiences are different and mine are just one person's experience.

kittylester I don’t mean to be augmentative but I had my Nan live with me with vascular dementia it was a slow decline just like my Mum who had Alzheimer’s I saw very little difference

Juniper1, I am so sorry to hear this. I'm in a similar position, though fortunately have a lot of support around with others in a similar position. Is your OH on medication? If it's Alzheimers, there are various drugs to slow down the decline. We're hoping that my OH will go on a clinical trial with one of the new drugs, which sadly can't be obtained on the NHS as its so expensive. What area are you in? Don't be afraid to ask for help, as it's so important to look after yourself too.

www.dementiauk.org/information-and-support/how-we-can-support-you/what-is-an-admiral-nurse/

Link to Admiral Nurses.

Please try to contact your local Dementia Support Service

Or

Admiral Nurses should be able to point you in the direction.

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

forum.alzheimers.org.uk/

I have attendance allowance now, was saving in case I was ill or hospitalised and needed in house care for him.
Some family will help if I book dates, but times when no one here but us is hard.
I miss having someone to talk to/ discuss
I think the dementia type can be significant. Some have treatments. Vascular does not.
Anyone investigated stem cell therapy

Alzheimers has a gradual decline.

Vascular has a stepped decline.

Alzheimers is caused by plaques and tangles and medication can slow the decline.

Vascular is often caused by something like a TIA and medication can be prescribed for the underlying cause but not to slow the decline.

There are probably 400 different types - the commonest are Alzheimers, Vascular and mixed.

Others commonish types are Lewy Bodies and Fronto Temporal.

Thank you so much.
Diagnosed only 1 year, probably longer in reality.

My mother had dementia. ‘They’ said it was vascular dementia, don’t know how they knew as until very recently MRI scans weren’t carried out. Is there a difference?? Surely symptoms are the same…..She was offered a day at a local day centre to give my father a rest but she wouldn’t go…..

Different types progress differently.

OP, have you applied for Attendance Allowance?

Sorry, but why does it matter which dementia??

Our local hospice does daycare. Maybe enquire what your local hospice can offer you. Also try age concern.
Maybe a cleaner who can offer up an extra hour or two can be a godsend.

Sorry don’t know where ‘going’ came from!

Sorry that you’re both going through this, it must be so difficult.
I was going hoping Kittylester would respond, she has a good understanding of the condition.

I am so sorry to hear this.

What sort of dementia does he have?

Please contact the Alzheimer's Society (whatever his diagnosis).

In Leicestershire (where I volunteer) dementia services are mostly provided by AgeUk. There are Memory Cafes where you can meet other people living with dementia and their carers.

We also offer Carer Courses which provide information and advice on
benefits, coping strategies, sources of support and lots of other stuff.

Please access any and all help on offer.

Juniper1, I was so sorry to read your post. It’s a heart-breaking illness. You must be due lots of help. Contact the dementia nurse at the hospital and explain how you are feeling, or at least try your GP to point you in the direction for support. There is plenty of help out there and you aren’t the only one struggling to come to terms with this illness. Enquire about day care to give you some respite. Don’t carry the burden of this alone. It’s not fair on you and you have to look after yourself. Thinking of you.