Should my mum with advanced Parkinson’s be in a care home?

[BurntOutCarer]

I’ve put off writing this message for several years - reading the ‘so exhausted waiting for someone to die’ thread many times, knowing I’m not alone. But now I’m a at complete breaking point and need an external viewpoint.

My mum has advanced Parkinson’s disease. Diagnosed 11 years ago. She’s been widowed for many years. I’ve been responsible for her wellbeing for the past 8 years. There is no one to help with her care but me. My sibling lives abroad. Mum’s sisters are in good health and live locally but refuse to help in any way or in any emergency/crisis situation. I have young children, work full time, and am often single parenting as my husband works away a lot.

Mum’s Parkinson’s is so advanced she has district nurses attend her house twice a day to connect her and disconnect her to a medication pump that administers her medication. She has a cleaner one a week.

In the last two years alone (and there have been many many other crisis’ before this) she’s been in hospital about 6 times for various health crises.

She’s currently in hospital after a second traumatic bout of delirium, confusion and hallucinations whereby she was found screaming in the streets asking strangers for help, rambling, crying etc. She’d also overdosed her antibiotics in confusion and had refused to go to hospital earlier in the week even though the intensive health service team recommended she go with them to hospital. This resulted in a call from her district nurses late one night, telling me they had to leave her to go to their next appointment, but she was a danger to herself, and I had to go over and wait with her for an ambulance that would take 12-14 hours to arrive. Having been in this situation before, and now having PTSD from the trauma, I stood my ground and refused to go. I also couldn’t go as my child was extremely ill with flu. The ambulance then arrived in 30 minutes. It was extremely stressful and is only the very tip of the iceberg to all the emergencies I get drawn into that causes untold levels of trauma. I’ve had a breakdown from the stress and my career has suffered greatly because of it.

This is Mum’s second episode of delirium since last October.

Outside of the delirium episodes, these are the sort of things that happen a lot:

gets scammed financially by scam callers
failing to renew house insurance and other
fell in her garden this month smashing her shoulder
stuck face down on her bed unable to move and almost smothering herself
repeat middle of the night crisis calls to her Careline for numerous reasons ‘is confused, feels sick, can’t move, feels faint”
completely frozen and can’t move, nevermind walk
struggling to order her food online which she’s done for years
struggling to pay bills without help
gets frozen, can’t move and can’t turn the oven off resulting in emergency calls to me where I’m expected to drop things and go (but I often can’t go)
incoherent speech and not able to follow a conversation
repeatedly ignores boundaries and turns up at my house banging on doors and windows to come in when I’m at work (I work from home in a senior role) and won’t and can’t understand why this is not acceptable
reduced ability to risk assess
her friends called me last week to say she needs a care home and they can’t cope with her during coffee outings because they have their own health needs
increasingly unable to maintain her house
hours and hours every day of complete immobility

However, due to the complex and misunderstood nature of Parkinson’s you could meet her on a good hour and she’d be very mobile and able to mask really well.

She’s obsessed with her image and looks fairly young for someone in their late seventies. She still dyes her hair blonde, insists on lipstick and although extremely thin and frail now, does not ‘look’ like an elderly, white haired lady. Which I sometimes think makes medical teams assume she’s more capable than she is.

I also think she has early stage dementia due to personality changes, but she ‘passed’ the memory test recently as her short term memory is still mostly ok.

They want to discharge her from hospital and for the first time ever I’ve said I don’t think she is safe to live at home anymore.

There are a thousand more sad episodes but I don’t have the energy to write them down.

I am a broken daughter. Utterly broken by this and feel like this can’t go on.

She is extremely resistant to a care home and has said several times the only way she is leaving her house is in a coffin. At this rate, I feel I’ll be in a coffin before her from long term stress.

Last week was the lowest of the low after a week of zero sleep with a child with flu who ended up in a&e and every single agency possibly calling me about my mother who was delirious and also in the same hospital at the same time . It was too much. It is too much.

Everyone around me is saying she is no longer safe at home and should be in a nursing home.

thoughts?

You could have a much better relationship with your mother if her primary care needs were met and you got to spend your time together as equals. She would get to enjoy her time with you and even spend time with her grandchild.

Getting her to understand that is of course going to be difficult because it is always difficult. No one wants to give up their autonomy and independence. moving to a nursing home only when the hospital simply can’t let you go home is all too common, even though it is better to have time to research and pick a facility.

You are right and I have put this to her in this way several times.

When your mum does get admitted into a home, please give yourself AT least a few weeks off before going to see her.

This is very good advice for her sake as well as yours. People typically settle into a home better if they don't have a flurry of visitors in the first few weeks and instead get used to relying on staff for help and other residents for company, and become familiar with the routines and new surroundings. If family is always visiting they tend to stay in their room with the visitor and not take part in anything going on in the rest of the home. Then when the visitor leaves they feel lonely and lost.

@BurntOutCarer you have my very sincere sympathy.

I took the care home route early on and whilst my mother continues to pile on guilt, at least I know she is cared for and safe. Like someone else said, the fact is that there is no desirable outcome available. So actually having her properly looked after, and you not at permanent breaking point, is as good as it's going to get.

Solidarity. It's a bloody misery.

I’ve just received a rather garbled text message from my mum. She hasn’t been with it enough to text for two weeks but it reads as though a doctor consultant has just been to see her to suggest a 28 day respite stay/trial somewhere.

I am waiting for the doctor to call me with details.

For some reason, seeing that message from her made me feel so utterly awful for her.

I don’t want her to be at such a level she needs to be in a home. I want her able to live a relatively pain free and happy life in her own house. And even though I know that is never possible again - I feel her grief and sadness immeasurably. There are no winners in this situation. It is heartbreaking whichever way you look at it. :-(

Now I’m in panic/dread at the thought of an awful place. But I will wait until the medical team call me. The good news is I’m used to dealing with complex situations at work so I hope I’ll be a good advocate for her in choosing a place and getting it.

It’s great if the doctor recognises a care home is necessary.

Avoid catastrophising. I’ve been worried about relations going into care homes and they were so much safer and happier once they were in. None of them thought they wanted to go but it’s mainly fear of the unknown.

Make a shortlist of the appropriate homes around you with the best CQC rating and visit them all. Work out how to pay for the month’s trial. Start to think about preparing the house if she needs to sell it to pay for care, or if it simply needs to be sorted for her to vacate if renting.

Hi OP

Can you afford live-in care at home? There will be some financial support because of her dementia but the cost will need topping up by her/you. Also, you will need a supplementary carer to cover the live-in’s free time.

It’s such a difficult and upsetting problem in which there are no winners, everyone loses something.

Please be kind to yourself; you are trying to do your best in horrible circumstances.

@BurntOutCarer hugs first and foremost.

What I would say is try and move away from the ‘awful place’ thought. Try and appreciate that whilst the media love to make out all nursing homes are awful and all about profit the staff are very often angels. The management especially in nursing homes are experienced highly qualified staff essentially filling the gap where geriatric hospitals closed down years ago would have been.

Some of the boutique care homes are not a patch on the real nursing homes. My advice is draw on all your strengths of dealing with your job and take, or try to take a pragmatic view this is what Mum now needs - not wants.

@BurntOutCarer you can get all the cqc reports on line and to be honest good or above will all be fine, but you will only know when you go visit that it feels ‘kind’. You will know immediately if it isn’t. It is just as valuable to start ruling out places right away so you can immediately have a list of those you will say ‘no’ to as well. Edited to say some things that make a place outstanding may not be as important as you might think so don’t be put off going to visit other places.

My advice is when you go to visit homes don't be fooled by the gym , hairdressers, cinema, pool etc facilities available. There is an extremely expensive home near me , it's £1700 a week but my Mum wouldn't be able to use any of the facilities there . We went for a very homely local home where my Mum and we knew some of the residents and the carers already . I realise you may not be so lucky as we were but my Mum is so happy there . They are wonderful to her .

@BurntOutCarer I know a few people who've struggled on at home (or rather their families have struggled to keep them at home) only for them to flourish once they went into a care home.

This.

It sounds like it is well past time for her to be in residential care.

This is you being a caring daughter by ensuring your mum is safe and properly cared for. This will be acting in her best interests.

Another piece of advice , if you can ask the residents and the residents family what the home is like it will give you a more balanced unbiased opinion .

Another piece of advice , if you can ask the residents and the residents family what the home is like it will give you a more balanced unbiased opinion .

Find out more from.the hospital, but they may be talking about intermediate care/discharge to assess.

If so, this is a short-term placement that they will arrange and pay for (usually 4 to 6 weeks).

This may not be in the home you would choose, but she's likely to be more comfortable there than in hospital. (As a minimum she'll have her own room and therefore better sleep).

And it gives you time to find somewhere that's a good fit for the long term. All homes will offer an initial trial period, so she won't be locked intonation long contract and can easily move if the first one you try isn't working out.

Don't panic. This is a good thing.

Yes, it's sad she's in the condition she is - but that can't be changed. What can be changed is finding her surroundings where she's comfortable, looked after, and won't be 'frozen' for hours in an unsafe or uncomfortable place or position.

I agree this will be out of hospital nhs funded beds they move people there to assess what they need. This is when they can’t send them home to assess with temporary care or people aren’t suitable for rehab eg intensive physio in a centre/step down ward or community hospital - however I would say doctors often tell people they need to move to a home when as capacitated adults you can’t force them to do that without agreement and the other way round insist they often insist they are going home when they clearly lack the capacity to make that decision - discharge coordinator is the person to speak to and just make sure someone does and fully records a capacity assessment. If they thought she lacks capacity to consent to be in the hospital they should have already applied for a deprivation of liberty safeguards assessment and should have you named on the form as someone to consult. This gives you an indication as to whether they think she has capacity to consent to being in hospital to receive treatment. No dols= likely they will assume she has capacity. DoLS applied for suggests need to capacity assessment for discharge of any kind

I received an email from the complex case manager who I think was the discharge person who called me telling me they intended to discharge her soon and I pushed back saying they can’t because she is not safe at home. Anyway, the case manager said in her email that they talked with my mum and she has agreed to a 28 day placement under the D2A pathway. I think this is the 24-hour bedded care pathway 3. Used to assess long-term care needs.

I replied to this email writing a detailed, long history of her complex needs and difficulties, giving examples of things that regularly happen that prove she is not safe at home alone and at serious risk of harm. I asked that the contents of my email be shared with everyone involved in her care - social worker, Parkinson’s team, district nurse team, doctor, GP and her neurologist.

i explained that I could not do any of her care. That my sister could not do any of her care and her sisters see her about three times a year and therefore can not do any of her care.

I called mum on her mobile and she answered for the first time since she’s been in hospital. Absolutely typical that she sounded the most lucid, sane, reasonable and totally with it that she’s sounded in months. We had a calm conversation. She agreed that although she does not want to go to a residential setting, she knows she is no longer safe at home, so we have to try something different because we can’t go on like this. I have reassured her that I won’t let them place her just anywhere, that I will be her voice every step of they way and that I will do everything in my power to advocate and protect her. She was grateful and thanked me. I’ve also pointed out things I know will appeal highly to her, eg my eldest daughter will be at high school from September. They are very close. I’ve told mum she would actually get to see her more if she was in a residential setting because my daughter would be able to pop in to see her possibly on the way home from school without me the odd time because I’d know she could see mum in a safe setting. This is very true. At present, I can’t and don’t allow my oldest daughter to spend time alone with mum at her house because I can’t trust that she wouldn’t be exposed to something traumatic or something she’s not mature enough to handle. This hugely appealed to my mum.

I am concerned that with 24 hour support my mum will flourish and she’ll appear great during the 28 day placement so they’ll discharge at the end of it. My husband says there is no way she will be able to mask for that long.

At the moment all I feel is a HUGE amount of relief that mum will continue to be safe for at least another 28 days. I haven’t felt like I can breathe like this in the last 8 years.

Thank you to all the amazing people who have posted such great advice.

@BurntOutCarer what a relief for you. I would also say your husband is correct about her not being able to mask for the 28 days. Adding to that the staff will have seen this situation time and time again. They know people. They know that people do not just become sweet compliant oldies - they do not lose their personalities. I think one thing you could do is to avoid conversations with your Mum about ‘going home’. Change the subject, say it’s not up to you, anything to detract. Focus on the ‘isn’t this so much better than hospital’. Befriend the staff. Talk to the staff about Mum. If there is an activity co ordinator befriend them. My Dad would have said he hated all the things going on at his facility but he actually likes joining in with various activities. It passes time and reframes an afternoon sat in a chair to an afternoon being ‘busy’. Good luck and keep us updated.

@BurntOutCarer I hope my comment about people flourishing when they finally moved to a care home hasn't worried you. I didn't mean that they suddenly improved to the extent that they could go home. More that they were more sociable, more content, more involved with others and wished they had gone in earlier.

So good to read this update.
My old dad resisted carers and care home admission for far too long.
Different set of needs but just as awful for us as family trying to do our best and keep him safe.
Similar to you. We had another crisis and he was admitted to hospital.
Long story short he agreed to a 3 week respite stay in a lovely home near us and kept insisting he'd come home after.
He loved it so much, he chose to stay himself.
Actually said it was like being in a hotel.
He had space on his own and could socialise when he chose to. I don't think he realised how isolated he had become in his own home.
We had exactly the same thing with visits.
They were a pleasure whereas before they were preceded with dread (he had developed incontinence and had refused to wear pads etc)
Good luck

Hi everyone,

Yesterday I decided to visit some residential homes in the local area. I’m feeling pretty down by what I saw and learnt.

Two are, at best, ok. But they smell of urine (I know they all smell to some degree) and one mixed dementia patients with non dementia patients so there was screaming and shouting in the dining room etc.

Most of the managers did show shock at my mum only being in her mid late seventies and she’d be the stand out youngest resident in any place I’ve seen so far.

Then there are the financials. There is only one local authority funded place in our town. It’s full. There was one place that seemed wonderful that I know mum would like but it is £1350 per week and the manager says the local authority will only pay £850 a week when Mums money runs out. She has enough to self fund for just about two years if I sell her house for her to pay for it. The manager of the nice place told me that once Mums money runs out, and local authority take over paying for her care, they’d turf her out because the local authority have never once agreed to pay the difference. Family paying a top up of £1800 per month is not possible.

i can’t find clear guidance or rules about local authority care placements. Can they force my mum into a residential house outside of her local area? This would mean her friends will never see her and my ability to see her and support her would be severely limited.

The manager of the nice place made me feel awful. She stated that family ‘find the money by all chipping in’ to pay for their elderly relative. Who on earth has an extra £1800 per month indefinitely to put towards their parents elderly care?

Feeling deflated and flat. CHC funding seems highly unlikely although my mother in law does receive it for dementia.

I’m even toying with the idea of asking for 24/7 care in her own home but how is that funded once her savings are gone?

And also - every single home in our town is MUCH more than £850 a week so how are people able to live anywhere? Is it the classic case of the VERY rich are ok and the rest of us rot?

24 hour care at home is often more expensive than a care home. Does your Mum own her home?

The local.authority is vanishingly unlikely to pay for full time.home care - it costs more than a care home.

They shouldn't smell. Neither place my father was in did.

When the money runs out for someone in care, the local authority must either fund their existing place or a suitable alternative. You can argue against a.move if it would be detrimental (which by that stage, it usually is). Lack of social support would be an argument against an out-of-area place.

There are also immediate needs care annuities. When you sell the house, you could pay a lump sum to an insurance company. They then pay for care for as long as needed. Usually the annuity isn't for the full amount of care but for care cost minus pension income, which makes it a bit cheaper.

Is your mother receiving any benefits? If you have not claimed any now is the time to apply. She should get attendance allowance and maybe other benefits, I'm not well informed on benefits. Look at https://www.entitledto.co.uk/