So, a sudden change in status with middle stage alzheimers mum

[FinallyMovingHouse]

Hi all

I know that you are all the absolute experts on this and I definitely need your help.
Both parents caught the nasty cough going around and both had an expiratory wheeze so were seen by GP. Dad had not been able to sleep, as mum was getting worse during the night and basically wouldn't let him sleep (talking, poking, making tea, asking for tea, etc). Suspect that this led to the lack of recovery or at least didn't help.

Dad (88 and frail with long term heart issues) has a chest infection and now on antibs. Mum (middle stage alzheimers, but always physically stronger) was found to have atrial fibrillation (HR 160), suspected chest infection, UTI and high blood pressure and was therefore admitted that night.
3 days later and she's still in, with HR still 150 odd. She was distressed for the first 36 hours and since then has been vastly happier but making absolutely no sense at all; hallucinating etc, which I might expect with a UTI, but that should be improving (as is her chest) and not getting worse? She seems really happy with the business of everything going on around her, although is having to be supervised all night as she's pulling out all her monitors. My DSis (ex ITU sister) signed a DNR today. We don't get the impression that she's going downhill fast, although obviously still being in AF is not good and runs the risk of clots etc, hence the DNR.
So, back to the other issue.
My dad, who has been adamantly against any intervention, carers etc, has started to talk seriously today about getting her into a care home, as I think that this has demonstrated to him as to how little he was actually coping in reality and also, that mum is really enjoying the hustle and bustle of a clinical environment, now that she's used to it, he's wondering if a care home is a kinder option...she seems happier than when at home. He's now worrying about paying for it though.
They have some savings, own their house and half of the house value would be used (50% is in trust so can't be used as it's his), but he's slightly panicking about having to sell the house now to pay for it. Am I right in thinking that this can be left as a lien on the house and then the council will take the money back once the house is sold at a later date?
My Dsis and I saw a lovely care home about a year ago, but of course, if she stays in the (I assume) end stage of alzheimers, can she go into a 'normal' care home? What is the type I need and do I just need to ring them up to check or is it an advertised thing?

My Dsis and I and dad will meet tomorrow to discuss next steps, so any and all advice and 'things to think about' and plans to make would be most welcome.

Thanks in advance x

Ideally you want a care home which can accomodate her needs now as well as later. Ask your Mum’s named nurse for advice and they should be able to provide you with a summary of her current needs for when you ring care homes.

Having been in this situation before I would say it sounds like FIL can’t cope with carinf anymore but if MIL comes home rather than straight to a care home he will probably not want her to go into a care home.

On a side note, as your Dad is 88 and frail he should get a DNR too.

You need to look for a dementia care home for your mother. She will not be accepted in a normal residential home.

Forget the house entirely. None of it will be used for your mother's care fees while your dad is living it in. If your dad dies, or move to a care home himself, it would only then be used for fees.

Your mother's savings will be used to pay for care until they get down to the £23k mark. Then the local authority will pay (she will contribute her pension).

If your parents have joint savings, 50% of that will be considered hers. The rest is your dad's and disregarded.

Now would be an excellent time to move her to a care home, it will be mentally/emotionally easier for everyone. If she will be self funding, look here for care homes, filter by 'dementia'.

https://www.carehome.co.uk/

If she will need local authority funding, contact Adult Social Services for her area asap and go from there.

Agree with PP, house will not be counted at all while your father is living in it. (Assuming you are in England, I don't know situation in other UK countries). AgeUK have a genuinely helpful helpline and a website full of factsheets, and differentiate their advice according to country if necessary.

Edit to Add: of course she will need to pass a social services assessment and be deemed ill enough for a care home by them before they will fund anything.

If she is to be fully funded by the LA they won’t necessarily pay for the lovely care home you choose for her.

The social worker will do a financial assessment, which won’t include the house.

Has she had a capacity test?

Does she want to go into a home? My DM kept passing capacity tests even though she clearly didn’t have capacity in many areas of her life.

Some 'normal' care homes have a dementia section, so that residents who develop dementia or get worse can remain on site but move to the dementia area, so do ask your lovely care homes whether that's true for them.

Hope that you can find somewhere nice for her.

Thanks everyone and just what was needed.

To answer a few questions, they will be fully funding themselves as assets are well above the limit. They don't currently have a social worker, although they do have a named person associated with the attendance allowance. Not sure a social worker would be involved at all if self funding?

Capacity - she has a medical diagnosis of middle stage alzheimers and has attendance allowance for that.

My sister and I have a POA for both financial and medical for both mum and dad (dad sorted it in his 60s) and both now have a DNR (again, dad sorted that about 10 years ago for himself, as he's been on borrowed time with his heart for about 20 years).

Mum previously would not have wanted to go into a home and likely if asked, she would still say no, however currently she's away with the fairies (non technical term). She may well recover her senses a little if the infection and heart are under control, but that's a day by day thing right now. We just know that at the moment at least, dad doesn't feel capable of looking after her and hence need to look quickly for care, even if only respite.

xx

Oh and ought to say that although Dsis is local (30 mins drive) she works FT in a demanding job and I live 3 hours drive away. We definitely would not be able to look after mum (likely both if she was home) for anything more than a few days, as it involved annual leave.

I have no idea about processes etc as I'm not in the UK. But just wanted to say that often, if a person with dementia develops delirium from an illness, the delirium doesn't always fully resolve, and they are left with a deterioration of their dementia symptoms.

When you start viewing homes don’t take too much notice of fancy extras such as cinema rooms. Look at the staff to residents ratio and if the home has a homely feel. Also try and find out if the care home is also a nursing home so you won’t have to move her again. Like others have said you need one that caters for dementia.
It could be worth contacting social services and see if they can help with suggestions etc.

Hi all. So mum was in hosp for 5 days and then discharged. She was found to not have a UTI.
The discharge didn't go well as her AF went into overdrive and the chest infection antibiotics didn't work so she was ambulanced back in after 36 hours at home. We have found a space in a care home that deals with dementia, and she's being assessed this week with the thought that she will go straight in from hosp (we will tell her it's convalencence, if she minds). Her mental state has changed beyond recognition and she's vastly confused for most of the time, but happy until the sundowning starts at 3pm ish. Nights are terrible and she's now urine incontinent, so care at home with my frail dad is no longer a possibility at all.
May I ask a question about POAs registered before 2016. Hers and my dad's were registered in 2014 and all I can find online is that you therefore only present as paper copy, as you can't have an online code. The paper copy just says a confirmation of registration, case number and names of donor and attorneys (Dsis and I). I've managed to lose my original, but have a copy with the info on - Dsis has her original. Do we just use this if anyone asks for proof?

Many thanks all

I'm glad to hear your mother is (hopefully) being accepted by a care home.

My LPA was pre 2016 too so I had to use paper version.

I am not sure what you actually have in your possession. I've just looked at my mother's LPA, it is 11 pages long and is signed by my mother, me and her solicitor. It has been registered at the Office of the Public Guardian.

There is only one original. It is often held by the solicitor who did it (or whichever relative was instrumental in doing it).

What you need to present to each institution is a certified copy of the original. My mother's solicitor kept the original and sent me certified copies when requested (he stamps and initials each page). I got half a dozen because they are not reliably returned by the institutions.

If you do have the original, never give it to any institution. You may never see it again. I sent a certified copy to one, asking for it be returned. They shredded it.

Thank you for this. My Dsis only has a one page document, so I may ask my ddad to see if he was given anything else at the time.

Good info to never give an original! x

If it was done by a solicitor, the solicitor should have kept the original so you can get copies that way. You also need to check it has been registered with the OPG as it can't be used unless it has.

I'm going to check re whether done via solicitor or not...if it was cheaper without, my DDad will have done it himself! The docs say 'this lasting power of attorney was entered onto the register on .....date' so I'm assuming that all fine.

On a side note DNR need to be renewed yearly.

So predictably my Ddad didn't use a solicitor, but he has the originals and we'll get certified copies in the next 2 weeks.

Thanks all; you've been lifesavers during a really tricky time for all.xx

At least you now know where the originals are, well done! I hope your mum gets a placement soon and settles in.

The medical diagnosis and the capacity assessment are two different processes. Just because she has a diagnosis doesn't mean she has lost capacity. You will need to ask for an assessment of this before making any decisions about the future, because ultimately if she has capacity and doesn't want to go into a care home, then that's that - she can't be compelled. The capacity question will determine the way the whole situation will need to be managed.

Hi OP, my mum was admitted with pneumonia in the mid stages of Alzheimer's and it utterly unmade her, she was delirious and way way from reality, she was discharged home in quite the state but, although it took approximately 3 months, she did come back to much more herself for another couple of years (she also has AF by the way). It's only now 3 years later that she has become very remote due to the disease.

I don't say this to discourage the care home suggestions though, wish we'd done that as it's ruining my father caring for her overnight but he is too stubborn to seek change at the moment.

My mum had very bad delirium which did not fully resolve and which for a while obscured her developing Alzheimer's. It's tough, OP, and it will be very hard for your dad to manage. Your mum may well not want to go into a home but a good home will be very good at managing that and settling her in. I think you have to prioritise your dad not least because how your dad can cope has a very real impact on your mum's wellbeing too.

Hi, there is no suggestion that she still has capacity. She was 'applied for' in order to get the Attendance Allowance and there has been unable to deal with any of her own decisions, medical or otherwise, past "do I want a cup of tea" for a while, and before this latest drop. She is now known by the dementia team and was assessed yesterday by the care home and capacity has not been mentioned once, as I assume that it's blindingly obvious that she does not have it. She's not vastly keen on going into a care home, but she's not vastly keen on anything right now as she's just confused, anxious and afraid of pretty much everything. She is medically well enough to be discharged from hospital, hence the dementia team are involved in getting her somewhere safe.

Care home are really used to dealing with reluctant residents.

i’ve found them to be helpful in settling the EPICF (elderly person I care for) in.

Various staff members have told me to stop stressing at times and just let it ride. They also manage EPICF’s obsession with having money/bank cards well meanwhile I tie myself in knots that her having loads of cash puts staff at risk of theft accusations when it inevitably gets misplaced.

Losing stuff is a big issue for us. I got accused this week of cutting up her favourite blouse and sewing a cushion cover with it as it was lost. To be fair I did make a Christmas cushion cover for EPICF and one of the fabrics was similar. But I live 400 miles away so cushion cover was posted and the blouse was hanging in her wardrobe!!

Sounds like your Ma might be beyond this stage though (sorry). I hope the move goes well and your Dad gets a bit of life back.

The advice we got on settling was not to visit for first few days and having watched a friend’s mum basically sacrifice her entire life to whole day visits each day I would encourage your Pa to only go a few days a week and try to pursue some social stuff for himself.

Will the home label clothing or do you have to do that? The one EPICF does all that which is ace but it is £££. The cheaper one my grandfather was in required us to do it all.

Oh and EPICF is thriving in the home. Cognition is declining but enjoys the activities and chat (living alone before).

I still struggle a bit with making the decision but trying to keep them at home was killing me and was pretty precarious.