My DH - vascular dementia

[FlipFlops4Me]

About two years ago DH had a fairly severe stroke. Gradually he recovered somewhat although he was left with severe cognition problems and some physical difficulties.

Lately he has been having episodes of total absence - no idea who he is, who I am, where we are or anything else. After a few hours he gradually recovers although each episode leaves him a little more damaged. His physical frailty is increasing. Occupational Therapy are arranging for more things in the house to help - a Belfast frame around the loo, perching stool, chair raisers etc. I have a powerchair coming on Thursday which is attendant controlled.

Our GP told me to phone 999 on Wednesday in case it was crescendo TIA (often followed by stroke) but the CT scan was clear - just damage from the old stroke showing and the consultant said he suspects vascular dementia but referred us to the memory clinic.

He has now had three episodes in three days and is visibly deteriorating. My solicitor is calling this week to deal with LPA's and we're fingers crossed it's a good day (or hour).

Not asking anyone to diagnose but does this sound like vascular dementia? My experience is limited although I do have a lot of experience in caring for a limited mobility/cognition stroke victim. Any help appreciated, any ideas welcome - any reading suggestions very welcome!

I don't have anything constructive to add, but I've recently read this article in the Guardian about caring for someone with dementia. Comments at the end of it suggest that it's a useful guide for family members dealing with your situation.

@FlipFlops4Me I've just seen your post. You must be devastated. How are things now?

Is he living with you ? Or with someone else ? He certainly needs 24/7 help .

The blank periods he is having, may be related to TIA , but in any case , his dementia will continue to progress no matter what the cause is. It sounds like he will need to be in a care home soon if he hasn't got 24/7 care at home.

It's a good thing you are getting the LPA done, I hope it's a good day for it. Good luck with everything.

We're coping, but it's not going to be easy. Yes, he lives with me but I have retired so am available 24/7.

I have a respite worker (private) who comes for an afternoon every other week which helps enormously, and I have the world's best neighbours who all help where and when they can.

But things will get tough, I know.

My dad was diagnosed with vascular dementia and Alzheimer's last summer. He was in his 80's and hadn't had a brain scan to determine this. The diagnosis was made from his heart failure and a memory assessment. He had also had a TIA at 69.

His memory had been worsening a couple of years before his diagnosis. Maybe dad didn't actually have vascular dementia but he never had any blank spells as you are describing. What you describe does sound like my dad's TIA so it's good you have had that checked out. Keep reporting any further episodes to the GP and noting the frequency, time of day etc.

Vascular dementia can lead to balance and mobility issues and dad did look increasingly frail over the last year of his life and had several falls in his final months (he died two months ago)

I would say if you are seeing him more physically damaged after each episode and he hasn't fully recovered from his stroke you should not take for granted that you will be able to care for him alone as he ages. As dad's mobility declined, his care visits required two people and although he had lost a lot of weight I struggled to help him up from the floor or even his shower chair on my own.

All the best.

We've now had a formal diagnosis of vascular dementia which, although we suspected it (strongly) still comes as a bit of thump in the guts. We've been told that physical exercise, mental stimulation, a Mediterranean diet and keeping his blood pressure normal will all help. So we're going for a (slow) walk every day, I'm cooking from scratch more and I'm trying to make sure we go out for coffee or just to do pick up some bits from the shop - anything so that there are things to talk about, neighbours to bump into etc.

I'm having a disability shower installed, a stair lift and having a loo put in downstairs but not for a few weeks yet. They'll all be very useful. Also I'd like a new boiler I think to make sure the power bills stay as reasonable as possible.

Can't think of much else for the time being...

Sorry to hear that. It sounds like you are making some good plans for general health and well being for both of you. Remember you Ned to be in good shape to be his career so don't neglect yourself and your needs.

Attendance allowance - apply now if not already getting it. Age UK can help fill out the forms and it isn't means tested.

Tell the council about his illness. My parents got reduced council tax once dementia was diagnosed.

When you are ready be open with friends, family and neighbours about his diagnosis. Slow walks to cafes won't be so appealing in winter so a network of visitors who pop in to see you both for a coffee and chat will lift both of your spirits. Try not to drop off people's radar because you are busy looking after DH.

I'm so sorry to hear about your DH.

My DM had mixed dementia (Vascular + Alzheimer's). I just wanted to endorse the advice you've had about mental stimulation and socialising outside of the house. My mum's decline had been quite gentle until lockdown, but once the pandemic hit and she was shielding, the rate of decline was incredibly fast. The geriatric consultant that we saw when she was near the end, said that this had been quite a common impact from lockdown. It really underpins the importance of keeping the brain active and getting out and about.

So sorry to hear this OP. Sounds v tough. My FIL has been diagnosed with vascular dementia. He has had heart problems since relatively young. His cognition declined in the lockdowns but he was coping at home with his wife but then caught pneumonia and that really sent him down hill.
My understanding is that vascular dementia tends to be more 'stepped' in progression, with decline following a 'stress event', rather than gradual so my FIL took a rapid downturn following pneumonia but has now stabilised again (at his new worse level of cognition)

Thank you all for your advice. I note particularly about making sure we have visitors in the winter - very sensible. We'll still have to get out a couple of times a day for the dogs so we will both be getting exercise.

Luckily I love cooking - I'm looking forward to trying out a whole lot of recipes.

Interesting about steps down after stress events. I shall try to make sure that as far as possible he keeps on an even keel, and doesn't have any illnesses.

Thanks for the tip about Council Tax. I've downloaded a form and will submit it.

Does anyone know if dementia entitles you to a blue badge? He doesn't know where he lives or how to get here from anywhere else so I'm a bit doubtful but so many neighbours take us to appointments and insist on waiting for us that if I can get a blue badge for him it would be better.

Not sure on the entitlement but one thing I would say is that if your H isn't in the car whilst they are waiting then they cannot use the BB. The BB can only be used whilst the holder of the badge is physically present, or where you have parked up and then gone to fetch them / help them into the car.

Lots of people do break this rule but you can get caught out by it.

Does anyone know if dementia entitles you to a blue badge?

Yes we applied for and got one for DMIL

I'm glad that you've told the Council about his Dementia and I hope you get a reduced bill.

Do register him as a vulnerable customer with your Energy Suppliers too. If the power or gas is cut off for any reason they'll prioritise getting it back for you.

Someone further up suggested Attendance Allowance. If you do apply, and you should, phone for the forms rather than download them. If you call they will backdate the payments to the date of your call.

I'd also call his and your GP surgery and make sure you are down as his carer and ask them if there is a Carer's Hub you could contact. Ours runs all sorts of things including a Memory Cafe which is a good chance to socialise for both of you.

If he can't find his way around, you should fill in the Herbert Protocol. Google "Your county police Herbert protocol" do like Humberside Police Herbert Protocol.

It's usually a document you keep, is suggest on your phone of things like a picture of him and where he likes to go, just in case he ever does go missing. We were lucky on that DMIL did go missing but it was the height of Summer so she was ok when we found her.

Also fill in the Thus is me leaflet and keep it on your phone. It's useful for carers or any Hospital stays.

Thanks for the Herbert guide, BB advice and generally - I really appreciate it.

My DH wears an engraved ICE bracelet which he can't get off that has his name, address and my phone number on but I'll download the guide and tuck it into his jacket pocket. He's not a wanderer as he gets scared easily and by his preference is in the same room as me at all times which is OK with me if it keeps him happy.

He score 5/30 in the M-ACE test - can anyone tell me what stage of dementia he is at? I googled but all I can find is that a score of 21 or less is more or less definitive for dementia.

Sorry @FlipFlops4Me I don't know about the test. Hopefully will come along soon who can help

Sadly DH has had to go into residential care. His dementia deteriorated and the care got beyond my abilities. He has a full time 1 to 1 carer 24 hours a day because he is a danger to himself (all the time) and others (at night). He has destroyed his room a few times and attacks his carers regularly (he doesn't sleep for more than an hour or so at night).

I visit every day during the morning while he is himself. Sometimes we can talk, sometimes he spends a couple of hours crying while I cuddle him.

The home is lovely, the staff very caring and the food etc is excellent.

I alternate between feeling immense relief and incredible guilt. But I know I couldn't begin to look after him anymore.

This is an absolute shit of a disease.

So sorry to read your update OP. I can well appreciate the combination of guilt and relief. We felt that with FIL when we finally got him sorted in a home.
I wish you strength and send solidarity on your journey with this.

💕

Is there a typical life expectancy for those with vascular dementia? My brother has recently started to display these symptoms after a stroke a couple of years ago, he’s 56.

Please don't feel guilty Flipflop.

You did your absolute best for your DH when he was at home and you're still doing your absolute best by making sure he has the level of care he needs in the care home.

Allow yourself time to recuperate - it's so easy for carers to run themselves into the ground and not realise just how tired and burnt out they are.

You're absolutely right - it is a shitty disease