My husband has dementia

How long has he had dementia, also what type of dementia?
Is he bad enough to get a care package in place?
Maybe one of the family could sit in with him & let you go out.

Mt61

How long has he had dementia, also what type of dementia?
Is he bad enough to get a care package in place?
Maybe one of the family could sit in with him & let you go out.

I really feel for you- meant to add. 🫂

I'm really sorry - it's such a cruel disease and very tiring for the carer.

Use the Alzheimer's Society website for help and advice. There's also a good book of advice by June Andrews ("Dementia - the one-stop guide"). See if there are any local groups your DH could go to, to give you a break. If he becomes awkward about doing/not doing something, don't argue with him, deflect him by changing the subject.

Carry on doing as much as you can together for as long as possible. Going for walks is good for both of you. For yourself, it's important to get some time off, so do try to find some way of doing that, either by getting someone to come in and "visit" or by using a local group if there is one.

We have someone in our community who has Alzheimers. We all know and know how to cope with her, and make allowances. Some of your social circle might be able to do likewise.

Good luck and take care.

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.

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.

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.

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

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, but why does it matter which dementia??

Different types progress differently.

OP, have you applied for Attendance Allowance?

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…..

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

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.

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

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

forum.alzheimers.org.uk/

Please try to contact your local Dementia Support Service

Or

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

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

Link to Admiral Nurses.

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.

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

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.

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.

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.

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.

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