Undiagnosed dementia and now stroke - general advice needed

[FruHagen]

Hi all,

This is a few issues all rolled into one, maybe people can help with general advice.

My DM (84) has had a severe stroke 4 weeks ago and is in hospital. She can speak a bit, is very tired and now has a feeding tube into her stomach as she can't swallow.

Before it happened she was incredibly forgetful, and was I think mid stage Dementia. We have had no diagnosis as she refused to go to memory clinic and the lockdowns have stopped a lot of our plans to get her to a doctor.
It was obvious the past few months that her time living alone were numbered so we were building a granny flat for her at my siblings house.

Now though the stroke has changed that plan.

The doctors say she will need care to do all the basics now so I don't know what that means.

Is it a nursing home? How do we pay for that?

Can she live with one of us?

Do 84 year olds recover swallow function after stroke?

What happens after hospital? How long can she be there?

Will not having a diagnosis of dementia be a problem.

Anyone else faced this or can give me some input or information. It's difficult to get answers from the medical staff as with Omicron they are so short-staffed and busy.

Thanks for reading this far.

Sorry to hear about your poor mum. You will need to talk to the doctors about her prognosis and if she is likely to improve. The feeding tube may well remain there, its unlikely she will regain her swallowing but this is something the doctors and speech therapists need to investigate. It sounds as if she will need nursing care to wash, change her position, go to the toilet, basically she will need full care.. she will need to have a full care needs assessment, this can be done on the ward or in a nursing home if the doctor feels she would be more comfortable there and it would be safe for her to be transferred. Depending on her asessment she may qualify for some help with costs if she needs to pay for a carehome, it could be from chc if she has complex needs or a contribution called funded nursing care, attendance allowance can also help pay. If she has little money and assetts the local authority will pay. This is something the ward discharge team and social worker sort out. If she has now become bedbound then it might be hard for you all to live at home but it can be done with the right equipment, adaptations, carers and district nurses. Does anyone have power of attorney for her. I would keep trying to set up a call with her doctor because without a plan you cannot really move forward.

Is it a nursing home? How do we pay for that? The basic principle is that she pays, and if she can’t afford it, the LA will pay (though in a restricted choice of homes). They’ll do a financial assessment. Who was paying for the granny flat - if your Mum, don’t spend any more money on it now she can’t benefit.

If the LA makes any contribution, you won’t be able to get Attendance Allowance, but if she’s a self funder it’s a useful contribution.

Will not having a diagnosis of dementia be a problem? Not in my experience. They assess on the basis of needs, not diagnosis

Here are 2 websites that will help you: www.ageuk.org.uk/information-advice/care/
www.beaconchc.co.uk/what-is-nhs-continuing-healthcare/

The first is a good overview of the care system and its funding.

The second is a source of advice about Continuing Health Care Funding, which is a system whereby a person is granted un-means-tested coverage of their care costs in full - either in their own home or in a residential or nursing home. Essentially there is an assessment of their health needs that results in a decision that these are so great that they qualify for funding under the NHS, just as if they were in hospital. Your mum sounds as though she would qualify; and you need to insist that she has this assessment BEFORE she leaves hospital - get advice from the helpline on the second website above. Sometimes it is a fight to get this.

My OH, who had Parkinsons, qualified for this but was refused twice. I appealed (with the help of Beacon above) and was reimbursed his care costs (sadly after he had died).

I hope that the above websites will be of help to you.

Wanted you to see this helpful post from @Mischance @notaflyingmonkey

I second @Mischance to speak to Beacon. Because of how much care she sounds like she needs, she sounds like she could qualify for CHC and Beacon is a charity funded by the NHS to help people get CHC funding. However, funding is a battle so be prepared.

Beacon was amazing for us when we were trying to get care for my Mum.

Also, we used this company who we paid for but who acted as advocates for us during the CHC process. We were successful and got a high level of funding for my Mum so it is possible you just need to be prepared to fight.

www.eldercareconsultant.co.uk

Good luck and hope you get the help and support your Mum needs.

Ah, thanks for the tag Sandwich.

I am in a very similar situation to yourself @FruHagen. Hospital are keen to discharge DM asap following what they call a 'dense' stroke, which on top of her existing dementia has left her both physically and mentally incapacitated. She was able to get back some of her swallow function with the help of the OT. They told me that they can't see her improving beyond what she managed in the 10 days after the stroke.

Wow thanks for the help. Absolutely brilliant, you have all helped me so much.

@Mischance - I will follow your advice re- CHC and seeing if she is eligible.

@notaflyingmonkey yes, I think I saw your post the other day, I thought there were many similarities in our situation. So what is a dense stroke? My DM had a severe stroke.

@FruHagen

Wow thanks for the help. Absolutely brilliant, you have all helped me so much.

@Mischance - I will follow your advice re- CHC and seeing if she is eligible.

@notaflyingmonkey yes, I think I saw your post the other day, I thought there were many similarities in our situation. So what is a dense stroke? My DM had a severe stroke.

OP a dense stroke is a severe stroke. Professionals tend to refer to severe deficits as 'dense' so a dense weakness for example.

She may regain some swallow function, she sadly may not. If there is rehab potential and showing signs of improvement then perhaps weeks/months down the line you may see changes.

SLTs (Speech and Language Therapists) assess swallowing. It is early days but age and brain condition are key recovery factors. A 'damaged' brain ie damage pre stroke with cognitive changes will not recover in the same way a young, healthy brain was.

Which part of the brain was the stroke? If it was in the brain stem swallowing outcomes are worse than other brain locations.

The Stroke Association are a very good source of help. Do you have them in your area?

Thanks @bookish83 for explaining that.

So I don't know about the location of the stroke apart from it happened in the neck on the right hand side.

Is rehabilitation offered to everyone or only younger people or people with good chances of recovery?

It is possible/likely she will be discharged from hospital to either a rehab hospital or to a care home and from there a fuller assessment will be made of her long term care needs.

If she doesn’t qualify for CHC (and she may not, it’s a very high threshold) then a financial assessment will be done to see whether she will qualify for council funded care or whether she will be expected to pay for part or all of her care. You will not be expected to pay, but you may be encouraged to provide care yourselves - do be careful not to take on responsibilities you can’t sustain in the long term.

Potentially she could live with you with support from paid carers, but do think very carefully if this is the right thing for you all. For example, if she is incontinent are you willing to manage that if the carers are not on scene?

That sounds like she’s had a stroke possibly in her carotid artery caused by arterial disease of an aneurism.

@FruHagen

Thanks *@bookish83* for explaining that.

So I don't know about the location of the stroke apart from it happened in the neck on the right hand side.

Is rehabilitation offered to everyone or only younger people or people with good chances of recovery?

She may well be transferred to a rehab setting once she’s stable and no longer in need of hospital care. My stepfather is currently in this situation, but we’ve been told that he won’t get moved yet due to covid restrictions - the local settings aren’t taking in anyone at the moment. He will be kept in hospital until a place becomes available. He will spend some time there, then a decision made about where to be placed long term.