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?

What alternatives do you suggest? Her care won’t cost any less at home and there is no way of avoiding the considerable care costs for 24/7 care as long as DM has the funds to pay for them. 1350 pw is actually relatively low for dementia care - you won’t find it for significantly less and if you do one would question the quality of care.

If DM had nothing she would qualify for LA care now and OP would have to accept that was all that was available. As things stand, it makes sense to make her comfortable for a couple of years and find an LA home for her further down the line if necessary.

After another long phone call - this time with mum’s Parkinson’s nurse, I then had to work until 8 pm to catch up on work.

I’ve had so many of these negative, draining, long winded conversations about Mum’s care/health/condition/illnesses/status/needs/challenges that I feel like I just move through life in a permanent state of depression. Every call results in an action for me. This one was no different. They need me to collect some medical equipment from her house and drop it at the hospital tomorrow.

Meanwhile, my whiter than snow aunty is sunning herself on a beach on her millionth holiday, probably drafting her next instalment of ‘BurntOutCarer is a dreadful human being because…’

The top line on the conversation with the Parkinson’s nurse is that no one can say why mum has been having hallucinations. They aren’t convinced it’s the medication since the dosage is very low and hasn’t been increased for a long time. The nurse told me mum is very good for someone diagnosed 11 years ago. I didn’t know whether to laugh or cry. Comments like this make me feel like I’m the ONLY person who really knows what my mother goes through and also terrifies me that THIS is seen as ‘good’ Imagine what ‘bad’ is going to bring. It’s too much.

No news on the 28 day placement. I assume because they can’t find an available place that is cheap enough. I don’t care about inheritance. We are working class and will
remain so, since the government don’t means test or cap care fees and don’t care about us as a class. Even a short duration care home stay is financially catastrophic for your average working class person, absorbing 100% assets quickly. It’s much less likely to be catastrophic for the wealthy. When you were born working class, you are used to having nothing. What I do care about is not distressing mum by a care home change when her money runs out. That would be so stressful for her and is something I want to avoid.

This is so draining for you -I'm so sorry.

A word of warning - about the medical equipment. Make sure it's got your Mum's name all over it. There are dreadful stories of patient's own equipment, bought and paid for by them, being commandeered for use by other patients and then going missing.

What I do care about is not distressing mum by a care home change when her money runs out. That would be so stressful for her and is something I want to avoid.

I think you’re catastrophising again. It’s not uncommon to have to move care homes because people go into one and then develop something it doesn’t cater for - dementia being one of the most common examples, but it could be mobility issues, nursing care etc, sometimes they develop an inappropriate attachment to another inmate and have to be separated etc.

Baldly - the more your mum’s brain deteriorates the less she knows where she is.

Hallucinations are common in Parkinson’s so I’m not sure why they’re saying they don’t know why she has them.

I absolutely empathise. We’ve been through it with my mil, who had dementia, and currently going through it with my mum, who has parkinsonisms (tremors but not Parkinson’s). I’ve been full time caring for my mum for 3 years and am burned out a little. She has friends that rarely visit and never help but always have advice on what I need to be doing more (never any recognition of the hundredweight of things I do so for her!). So I understand your aunty issues.

With my mil, we gave up on social services and DRs, who always said she was fine when she absolutely wasn’t. We contacted a few care homes and the really lovely one we liked were great in helping us persuade her to do a trial there while we pretended to go on holiday. She was there 8 years and was very well looked after. It did use up 90% of her house sale and savings. It might be worth chatting to someone from a care home?

Well I can tell you for certain, in my council it happens on a very regular basis.

The 28 day hospital beds will be block booked in particular homes by the nhs, the issue is not everyone can be moved after the 28 days so there can be a backlog with these! They won’t see what is available until she is medically ready to go. They can offer a permanent placement further away but as a self-funder they may expect you to find a placement or they may assist but charge you for the privilege of arranging one. They can move people when they run out of funds but usually try to negotiate with the home and normally find a middle ground. New people are an unknown quantity for care homes it’s easier for them to stick to who they know if all is going well.
With care homes ones run by charities are a good option generally have more morals than the big corporations where even those ‘not for profit’ are using the profits to simply buy more care homes.

Spent the morning at the hospital with my mum. Was so tired and stressed I got in the bed with her and we had a snooze together.

Still waiting on the 28 day placement thing. Mum is still having hallucinations but is not delirious or confused. Just keeps seeing people who don’t exist.

I sorted her phone yet again. Every time I leave her phone disconnects itself from the wi fi and she can’t text anyone. A flurry of texts messages came in when I reconnected it. Including one from my aunty verbally abusing me again accusing me of ‘playing games’. I think she’s furious and trying to get a rise out of anyone in desperation, because I won’t engage with her. You can’t reason with crazy and narcissism.

A doctor arrived and told my mum she was on a different bladder tablet now. This confused us a little. The doctor returned later and apologised saying she’d got the wrong patient and mixed her up with the woman in the next cubicle. Then promptly went to the next cubicle, and told the woman in it that her bloods showed she’d had a heart attack! Imagine if she’d told that my mum by accident.

It’s really really not funny but we did laugh a lot when my mum then asked them later, “Excuse me, so I guess my bladder is fine then?”

There is so little laughter with my mum these last few months that I cling on to that moment of humour and smile. I’ll take it.

Returned home to a call from my mother in laws care home to say they are removing CHC funding.

You couldn’t make it up.

We have progress. The complex case manager called me today to say that she had discussed Mum’s needs with her social worker and they both agreed that having met mum and going off the email I sent to them (I listed all the things she struggles with and all the ways she is at risk) they feel her health needs are so complex and unpredictable that a normal care home would not meet her needs. They recommend a nursing home with qualified nurses available 24/7.

i was stunned. I think this is the first time in the last say, five years, that anyone has really understood and listened to what I am telling them. I was expecting them to move her to a standard care home. I felt so relieved that without my direct ask, they came to the conclusion themselves, that she is such a complex case, that she actually needs nursing care, not just social care.

I feel validated. And that’s been such a rare thing when caring for my mum that. The relief that I feel someone has heard me is immense. And I feel like I might actually have done something good for her.

I should receive a list of possible places in the next few days. Fingers crossed!

Thank you again to all the people who commented. It’s been immeasurably helpful.

That's great news, OP. When you're ground down by caring, it's amazing what a difference it can make to feel listened to. To feel like someone else finally recognises what an impossible situation you're in. You must feel such a sense of relief.

Once things start falling into place I really hope you get some respite. Parkinson's/dementia is an incredibly hard road, and you and your mum both need all the support you can get. Hope you're turning a corner now and things improve for you. Good luck.

@BurntOutCarer that's wonderful news. The relief must be immense.

Step back. Way, way back. Make sure the hospital, authorities etc know you will not be providing care. Be less available when she phones. You can’t pour from an empty cup and you sound dangerously close to crashing and burning op - you owe it to your kids as well as yourself to Step Back and what will be will be.

Theoretically, this is exactly what the op should do, but it’s so, so hard when it’s a parent, alone and vulnerable, and you love them. I was in a similar position with my Mum and eventually she came to live with us for 4 years before she died (not to be recommended). I don’t want to diminish the term, but I still feel like I almost have PTSD from it nearly 10 years on….
Wishing you much strength, op. It’s unbearably difficult. All I can suggest is re-iterating to those who ask, that due to your job/family responsibilities you will not be able to offer any practical care, but in your opinion she is not capable of living alone. Cite all the crises/emergencies you have done in your post.

After one spell in hospital, my Mum was discharged into a care home temporarily, I think,(I can’t remember the details, now), but I was desperately hoping she would settle and like(!) it and maybe be able to stay there. She was so unhappy that I brought her back home after a fortnight…
I don’t know if respite care on discharge would be an option for your Mum? She might actually like being looked after and decide it’s better than struggling at home?

X post. Lovely to read your update, op. 🤞it all works out for you both!

@BurntOutCarer great to hear you have progress. IF you have a social worker and the decision has been made via a best interests or multi disciplinary team meeting then they may mention invoking a DoLs - deprivation of liberty. It might then be that because the recommendation is full time nursing care that the nursing element of the care would be covered or even better an application for continuing healthcare CHC might be on the cards. If you do not ask these questions you won’t get advice. If you have a local council website do Google CHC for your area. There are companies who will pursue it for you but I have not heard good about them. Firmly pursue it with the SW and also the home when you eventually find one. Remember your mum needs nursing care, to be safe, warm and fed. She doesn’t need a cinema room and boutique hotel styling. Keep us updated. 🤗

Well done OP. My DMum is currently burning through her 6 weeks post hospital care. (Parkinson’s and broken hip). I was going to sympathise and suggest you request the six week care package to be residential care, they will do this (and you can convince DP that it’s temporary) because often the outcome is either very good rehabilitation and patient rebounds well or the Care facility recommends residential care, however it sounds like you have smashed it and good a great outcome.

Your DM may thrive with company and care, you can sell it to her as a temporary option if it helps.

I’m with you on not changing your mobile number, wtf?! was that suggestion about.

Good luck and best wishes to you and your DMum.