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?

OP you can't control your mum's behaviour but you can control your own. I'd tell all of them that in your opinion she needs to be in a care home. I'd also tell them that as from right now, you're removing all her "care" from your own life. You don't need to justify it with reasons of carer burnout, sick DC or anything else. Save your energy, people will judge you regardless and if you present them with a you-problem they'll try to find a you-solution. So give them a them-problem. She's currently in hospital and you're permanently withdrawing all of your caring services to get on with living your own life. It's not up for discussion, end of.

Stop picking up the phone to any of these agencies. Attend the meeting and say nothing, except to reiterate that you've permanently withdraen all your care. Only attend if you want to know what's going on. Otherwise don't even attend.

Step into the role of "daughter". You live a 15 min walk away and are unwell. So a visit once a month for an hour sounds reasonable. You'll be visiting to chat with your mum, not to do any housework or caring duties. No matter the state of the place or of her, just leave it. She chose it, so accept and respect her choice. If an ambulance is needed, you call one and state she's unattended, then go home once your hour is up, leaving the door on the latch.

A daughter is respectful, so accept her wish to stay home until she dies. Come to terms with the fact that it'll be unpleasant for her, but no more unpleasant than being medicated to within an inch of death and kept that way for years, in a care home.

If someone else decrees that she's to go to a care home then it's nothing to do with you. It was never your decision to make anyway. You can do you monthly visit there if it's nearby. If not, she'll see you a couple of times a year like most people with adult DC who live a distance away.

I'm so sorry for you. I could have written your message in part, including the overseas sibling, but my mum was also alive so we shared the burden between us. I could NOT IN A MILLION YEARS have done it on my own, as you are, and you need to put an end to it now or you will have a full-on breakdown and not be able to care for your daughter at all.

My father had advanced Parkinson's and Lewy Body. It took so many crises before anyone took us seriously. We had the emergency dementia care team come out one day after I phoned the GP in desperation and said me and my mum could no longer look after my dad - he was hallucinating 90% of the day, in extreme psychosis, totally incontinent, unable to walk or move his arms, so couldn't feed himself or go to the toilet independently. When they came round he miraculously went back to a state of relative normality, made normal conversation with them etc, and they immediately 'discharged' us from needing any additional support. Left us with a brochure for care agencies.

For more than four years, my mum did not get more than a couple of hours sleep per night. My dad wandered around the house every single night, saying he wanted to 'go home', or saying the room was filling up with water and there were snakes all over the floor, or thinking my mum was an imposter and not his 'real wife', and when we did eventually get him back into the bed, he would wet the bed multiple times, or worse. Even through incontinence pads. Every single night.

After one particularly terrible night where he tried to pick his skin off for more than six hours as he thought insects were crawling over him, he was so distressed that NHS111 called an ambulance for him. That was his last night ever at home. He was in hospital in extreme psychosis for the next 7 weeks. Eventually they said he was 'medically fit' to be discharged - essentially they'd found a drug that just turned him into a zombie - but we refused, because there was absolutely no way we could look after him and we'd been unable to find any agency that could provide us with round-the-clock care. As it happened, my dad had a stroke and died in hospital two weeks after that, and though it makes me feel like the worst person on earth for saying it, it was a blessing in disguise. He had suffered enough.

But if that hadn't have happened, I would have stood my ground, and an alternative solution would have had to be found. You cannot, cannot, cannot do this any more. You matter too.

There's a Lewy Body group on Facebook that I found very helpful and supportive. It's US/Canadian-based but there were plenty of Brits on there too. So many knowledgable and empathetic people who will help and offer advice and support you - might be worth a look. It's called 'Lewy Body Dementia Carers' but is for Parkinson's too as they're so closely related. Good luck, OP.

My dm had Parkinsons for the last ten years of her life. For the final 5 it took her whole family of 8 ( big lrish family) to care for her as well as a support person who got her up every morning/ showered etc and another one who came to give her lunch as she couldn't be alone while eating. We were all at work. We took it in turns to put her to bed, leaving her meals, do her shopping and respond to her alarm calls signally that she had fallen and needed immediate help. We were all equally involved.

With 8 of us we were flat out. I do not know how you could do that alone..not even for a week. We were coming to the end of our resources when my dm passed away unexpectedly. Being a sensible, stoic woman she knew herself it was all too much and had reconciled herself to going into a nursing home. She had absolutely no dementia issues..it was all physical but still so so difficult. We also had nursing members in the family who could advise us.
I am only saying all this to show how difficult it was and to insist you cannot do this. She must go into a nursing home where she will be safe and you can visit in your own time and take care of your own responsibilities. There is no guilt in this. Do not bring her home from the hospital. This has to change now.

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

Listen to them.

I’ve never gone more than two weeks without seeing her in the last 8 years. And for the first 5 it was several times a week. She would not allow a month.

Recently we had some work on the house which meant I had to paint newly plastered walls for 6 weeks in a row at weekends, and work full time in the week. I explained that I could not come over as much as I was knee deep in painting day and night. She turned up late one afternoon when I had promised my child I would try to squeeze in a park visit. My mother refused to leave, repeatedly banging on the door. It was the first time I refused to open the door. She told all her friends how awful I was for not letting her in.

She has been turning up unannounced for years and years. I’ve tried explaining how I need rest, or how I might have friends over, or I might be ill, or presenting a webinar at work. She doesn’t care. She turns up anyway.

And that’s the problem. During her mobile moments, she can walk 15 minutes to my house no problem (then invariably freezes up at my house, forcing me to abandon my own plans, run around feeding her and hosting her, and drive her home later, even though I didn’t agree to the visit or ask for it).

Step right away and make it clear you will no longer be involved in any capacity. If she has a door key in hospital, take it off her.
The wants of someone at the end of life don't trump those of somebody in the prime of theirs.

Honestly, I'd block her number. And don't answer the door if she comes to your house. She'll keep doing it if she gets the result she wants. Call the police if she's behaving unreasonably and hammering on windows etc. She won't get prosecuted but she will get constantly referred to social services/taken to mental hospital/ambulance called as the police deem appropriate and the authorities will sit up and take notice eventually.

Stop answering her calls, her friends calls, her social worker calls etc. Just let everything go to voicemail, switch off the phone if you have to and only return calls that are to do with you and your /DC life, not your DMs.

If even listening to voicemail is getting to you, either get a new number or contact customer service and ask them to disable voicemail. So it'll just ring and ring. Any of your friends and contacts needing you urgently will text you or email you. If they don't then it wasn't urgent and you can return their missed call at your own convenience.

Refuse to help with any crises or things that need fixing whilst you're visiting DM, you're there to chat that's all. If she gets angry or aggressive then leave.

She can't help being ill but if she's home it's through her own choice, if she's suffering it's the results of her own choices. You don't have to tolerate crap from her just because she's ill.

Get hold of the social worker and make sure they do a capacity assessment-delirium is enough to justify this no dementia diagnosis needed. If your mum demonstrates she fully understands the risks of being back home she will be discharged back home they have no choice it’s the law. but make a social worker is assessing executive function as part of that capacity assessment that is what she says she actually does eg if she tells them she washes and dresses herself no problems at all, the social worker needs to be able to say for example “I have been informed x times per week you cannot do x,w and z , you end up calling your daughter and this caused these risks how will you manage that at home? and if she has been told you are not available anymore but insists she will she call you or she is not at risk they may decide she lacks capacity to make the decision about her own care and support needs. Has she considered other types of care? eg housing with care on site, usually a big block of flats with team of carers on site that can be called upon outside planned care times for emergencies? It’s less of a loss of independence and they usually have communal cafe, activities on site and the posher ones have hydro pools or are built round the local cricket pitch!

I agree with not answering her phone. And don’t have contact with her horrible siblings. Don’t take on her problems with social workers etc.
I think she would be happier in a home. While she is able to chat having carers around to rant at would be good.
My DB had Parkinson’s I wasn’t first port
of call - he was found wandering at night by police,twice, so went to hospital then care home.
Can you go and stay with family so she can’t find you? Once she is a danger to herself or others she’ll need to be in a home but it seems she is being saved from danger by you /carers.

"Always there for years etc etc...She would not allow a month".

I reiterate - YOU are in control of YOUR behaviour.

She doesn't get to decide what you're "allowed" to do. She doesn't own you! She has no entitlement whatsoever to your time. YOU decide how often you're willing to visit and on what terms.

It's a take-it-or-leave-it deal, not something she can negotiate on because you're not open to negotiation.

You absolutely DON'T have to do whatever she says/wants. That's the behaviour of a control freak. It's how you've got sucked into this situation in the first place, by not understanding you have full autonomy over your own life. She may have controlled you up to now but what you need to realise is - people can only treat you how you let them.

You can end her reign of control any time you want. Like right now. All you have to do is start making your own decisions and choices, refusing to be affected by hers and walking away (literally) from any anger directed at you for daring to have some boundaries.

You get one life OP. You've spent it in her shadow, at her beck-and-call, long enough.

@BurntOutCarer it really does sound like it is time. The delirium - can also be a side effect of some of the Parkinson drugs. Trying to think which one but cannot remember. It’s an awful disease, sending you a hug.

I'm sorry you are in this predicament OP.
I agree with the others, step right back.
Why don't you find a home for your mum? Don't rely on the hospital. Do you have POA?
This is a really difficult situation but it sounds like your mum needs support and the security of a nursing home.

I do understand the difficulty but at the same time I don’t really understand people who can’t get their elderly ailing relatives under control. You need to stop running yourself ragged trying to people-please everyone, take control and do what is needed to safeguard your mum.

She may not like the idea of a care home but ime relatives have experienced considerable relief to get into one and be released from the burden of worrying about themselves and their properties. Good luck.

Unfortunately she probably doesn’t meet the criteria for forced admission to a care home.
Howver - that doesn’t mean things can’t get better for you.

Make some time to meet the hospital discharge co-ordination yourself, and make your position very clear.

1. You will be removing yourself from the care line contacts as you’re not able to manage it any more.
2. That you’ll be travelling away with work regularly for several periods over the next few months, typically at short notice (even if you’re not, make it up). Therefore your mum needs to be independent of you.

Then meet the social worker and have the same conversation. Ensure that you’ve formally reported that you’ve got safeguarding concerns about her as a vulnerable adult.

My Mum was in a very similar situation to your Mum OP and two years ago she went into a home for respite . She loved it there and decided to stay .
Thank God because it was getting impossible to care for her at home anymore . She has deteriorated further in the two years and l can't tell you the relief of having her there and happy and safe gives me . So l am going to say to you to put your Mum in a home . You will get your life back and your Mum will be safe . I realise it's very upsetting for you both but it sounds to me like it's time . Wishing you both the very best .

It's a heartbreaking decision to put somebody in a care home but it sounds like you're at breaking point - it's a choice between you and your mum.

My dad had Parkinson's and dementia, so I understand. He also passed the memory test long after his dementia was very obvious to us. He always went up 2 gears with any outsiders. It's a terrible illness.

One thing I’m not sure about is if mum agreed to go in a home, but social services say she’s not bad enough for one, if she self funded and went in one anyway, and her funds run out (they’d last a couple of years tops as she has few assets) wouldn’t they then turf her out?

This is dreadful. I’m so sorry you went through this.

Given what you have explained about your Mum's condition. I find it's highly unlikely the health authority would kick her out after the self funded money had run out OP .

If she has funds she wouldn’t qualify for state funded home anyway. If her funds run out she would have to move to a state care home or a private care home that takes state funded clients. If you can find a private care home that takes state funded clients so she doesn’t have to move.

With advanced Parkinson’s she may not last more than the two years anyway. Not that Parkinson’s itself kills but it weakens people so they die of other things.

I suggest that you ask the social worker about continuing healthcare funding as if your mother's needs are primary health needs then the NHS should arrange and pay for her care - possibly in a nursing home.
Also use the words 'unsafe discharge' repeatedly if there is any suggestion she can return to her own home.

A couple of thoughts

The 6 week care package you mentioned is arranged on the hospital side of things. Your Mum needs to be assessed by her local social services department - the care-at-home packages they arrange are on-going.

You have plenty of 'evidence' your Mum can't cope by herself - the district nurses, the ambulance call outs, the hospital admissions.

If she is possibility hallucinating, has she been assessed by a psychiatrist ? Slightly different diagnosis but FIL was sectioned, a section 3, which meant his aftercare, ie care home, was in large part paid for by the NHS. Could you request an psychiatric assessment ?

I'm strongly suggesting you request a meeting with the hospital discharge team and lay out the situation from your point of view. Yours wouldn't be the first parent who tells the nursing staff - my DD will look after me, don't need any carers coming in.

I am sorry but you will need to harden your heart, put up boundaries and stick to them. I'm sorry I don't recall - do you have a DH or DP ? If so would he answer the door and say your unavailable, put her in the car and drive her home ?

This is an awful situation and I really feel for you

Parkinson’s doesn’t generally qualify as primary care needs neither does dementia - they’re more social and personal care until the very last stages.

Especially with another 2 years progression.

OP, I understand.the concern. And in theory if she ran out of money and was assessed as.not needing care, then the LA could refuse to pay for her to stay in the care home (but they would then need to find her suitable social housing).

But even if that did happen, you would have had 2 years break first. And realistically, it won't happen. She may be able.to pull off showtime.for the duration of assessments at the moment, hut she won't be able.to keep it up for 2.years in a home. Her real.state and care needs will be formally documented - and will almost certainly have deteriorated.

My dad had Parkinson's.
He spent the last few years of his life in care.
It feels like your mum's time has come.
DM had to make it very clear to the hospital and social services that could no longer care for him at home.