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?

I’d just like to say a huge thank you to everyone who’ll took time out of their day to comment on my post.

I was relieved to read that most, if not all, agree we are at the residential care point. I spoke with my sister last night, who thankfully is extremely supportive and in agreement on this.

The discharge team are due to email me over the coming days regarding this, and are going to start conversations with a social worker. My Sister and I are going to ensure that we send them the true 24 hour reality of my Mums health needs and condition by writing it down and sending it via email to start a paper trail and log that we no longer think mum is safe at home and needs residential care.

I’m expecting a fight and I’m expecting mum will push back and get her way and end up back at home. But I’m determined to make my views known that I totally disagree.

My husband read my thread and commented that for some reason, when you read my thread comments, it hits home how insane and horrific this situation has become. It brings it home when reading it in black and white doesn’t it. Because it IS crazy.

Last night, my phone rang again from an unknown number. It was one of my auntie’s friends (who also happens to know my mum herself, but she is mainly my auntie’s friend) trying to get an update on my mum.

Because for the first time ever, I’ve refused to answer their own calls. Their own numbers are blocked. It felt so completely liberating and freeing, to stand up for myself. I said that I wasn’t going to tell her anything for her to feed back to my auntie. That I’m estranged from my auntie due to her continued mental and verbal abuse, and that she could tell my auntie from me, that she is responsible for her own relationship with her own sister, I’m not her PA, and if she wants to know how mum is, she can pull her lazy finger out and go see her at the hospital several times a week like I do. There was radio silence from the friend. 😂

Gosh that felt good.

Let’s see what today brings from all the hospital and medical agencies.

@BurntOutCarer couldn’t read your post and ignore. Your Mum needs a nursing home not a care home. Has anyone mentioned a Deprivation of Liberty (DoLs)? Our Dad had one imposed - thankfully - on him when our mother kept saying she wanted him to come home and that she would have a go caring for him. The OT who assessed the house recommended it was totally unsuitable and unsafe for him - late stage PD with LBD as well. We had to find the home but it was/is exactly what he needed and continues to need. You can then visit as your Mum’s daughter. Not a carer. Do pursue CHC I did and we were successful-the home helped guide with the right language to use. Obviously the home needs to accept CHC as well as self funders. Good luck and keep us updated.

Think you’re doing the right thing OP.

Hang in there!

This a really great advice @BlueLegume thank you. Our problem is, on discharge, my mum often climbs up the stairs in her house easily in front of OT. They watch her do it once - tick a box that she is fine, and off they tootle. Meanwhile later that very same hour, she’s completely immobile and can’t even turn on the spot without falling over.

I do have some experience with CHC. In addition to the above, we cared for my mother in law who has dementia. My husband is an only child and his mother has no siblings so her care all falls to us also. Luckily, she is now in a nursing home with CHC funding due to the behavioural element of her disease, mainly hitting and thumping people out of the blue.

As my mother needs district nurses twice a day already for her medication pump, and the unpredictable nature of her episodes and hallucinations, I’m hoping we might get CHC funding when the time comes.

on discharge, my mum often climbs up the stairs in her house easily in front of OT. They watch her do it once - tick a box that she is fine, and off they tootle. Meanwhile later that very same hour, she’s completely immobile and can’t even turn on the spot without falling over.

Showtime. It's similar to masking in autism, and is a known phenomenon.

https://coping.today/what-does-showtime-mean/

This (and many other descriptions of the phenomenon) suggests it's done consciously and on purpose. My experience is that it isn't - or at least not entirely.

There's a deeper 'emergency' response switched on that hides the symptoms, but they aren't 'doing it on purpose'. It's more like the people who can lift a car off a trapped child because they're fuelled by panic and adrenaline, but couldn't lift anywhere near that weight in a gym.

It's hard to demonstrate in a hospital environment, but if they do try to do an assessment at home I'd see if you can persuade them to do their tests and then go away amd leave you there for a bit. Then you film the same activities without a stranger observing.

DM needs a care home with a specialist unit for Parkinson’s. I’m not convinced she would qualify for nursing care at the moment on the basis of what you have written here. It doesn’t merely come down to the language used.

I had one elderly relative with advanced dementia who hallucinated daily, unable to manage her own medication, and was awarded nursing care only for her additional conditions relating to mobility.

A friend of mine, herself a psychiatrist, has a close relative who has just died with advanced Parkinson’s who was not eligible for nursing care until she was in the terminal phase.

My late mother had vascular dementia, my bar was when she was no longer safe/we couldn't keep her safe at home then it was time for a nursing home. She wasn't very happy about it of course but actually thrived there.

The alternative would be having live in carers but they are just as expensive as a home so it depends on the finances as to whether that's an option or not.

I think you have done amazingly well to have kept your mother at home until this point.

When I was in a similar situation my DH explained to me that it probably was not going to end well whatever altruistic choices I made.

I too had to face the accusations from relatives who didn’t really understand the situation and who enjoyed feeling holier than thou, whilst not being willing to assist in any way. I tried to train myself to discount them, but it was very painful.

It’s all a few years behind me now. I still feel a pang when I think of the choices I made, but then I review them and realise that I would make the same choices all over again. So I can live with the regrets.

Be courageous look after yourself and your immediate family. Distance yourself from the naysayers. Just do what you know is necessary now.
Good luck.

Just making my way through your thread and am so happy that you have your sister on your side. And that you put those boundaries in place with your aunts, maybe a few home truths dished out to their friends is just what is needed to make sure people know what is really going on. I've no advice to offer that anyone else hasn't already said but just to make sure to prioritise yourself and your own family in this, you deserve a life too

You tell the hospital everything.
Speak to the SW and discharge coordinator tell them you are no longer able to provide the care you have been and it would be an unsafe discharge.
Many people don't want to go into care but it comes down to safety.

We snuck my mum into a care home on the back of a hospital stay, telling her it was for ‘step down care’ to get her fully fit again. And it would have been, if she’d asked to go home. But she didn’t: she actually found it liberating to be looked after, after years of stubborn refusal. Not having to struggle with meals anymore, striggle in the shower, having someone to brush her hair and put her socks on, no need to remember about locking doors , turning off the hob.

and the additional bonus was, my time with her was no longer in the context of mercy dashes to help, constantly late for the school run or shorting my employer. No longer picking up chores, cleaning up mess, with no quality time. Instead, I could schedule my visits and we could spend them TALKING. i wasn’t stressed, she wasn’t stressed.

Sending you a hug. Stick to your decision. Good luck

OP, is it worth changing your phone number AND blocking your aunties on it?

I found it's more difficult to block than you might think. If you block them without disabling voicemail the calls go to voicemail, if you block while voicemail is disabled you still get a notification that they've called.

It sounds horrific, and I agree with everyone else about stepping back, getting authorities involved if your mum appears at your house, telling SW you're not able to provide care.

I'd also be absolutely furious about aunty giving your address to strangers, particularly when you've got kids in the house. I'm not sure how to address this as moving house is a pita, but it might be worth checking out whether or not it's legal for her to do this, as I suspect it probably isn't - it's certainly a very stupid thing to do at best.

This - getting time with your relative not spending time arranging things and cleaning

I would love this to be the future. Mum well cared for and safe and actually liking a new living situation.

She is very stubborn and controlling though so I can’t see this happening.

I am so pleased it worked out for you.

When talking to the hospital/ social worker/discharge team you need to say the following:

You are now no longer able to meet ANY of your mum's care needs because of your own and your family's health and care. Don't be drawn into discussion about what your issues are, or "well could you just ..." Just do the broken record on it.

You believe it will be an unsafe discharge if they send her home, even if they put a re-ablement package in. Again don't discuss, just repeat. Ask that they record this in your mum's notes as your view on the matter

It is great that your sister is in agreement.

If your aunties do get in contact ( and I see no reason why you should speak to them) you could just say " Yes, mum is in a difficult situation. Please contact the hospital if you think there is anything you can do to help" Again, go broken record. Say nothing else.

You have done amazingly well so far.

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

Thank you. This is really good advice.

As is all the advice from other posters. I’m so grateful for the kindness of strangers.

I’ve had my number for over 20 years. My work contacts, of which there are hundreds due to my role, all have this number and work pay the my phone contract. To change my number would create a whole raft of life admin.

it’s very frustrating that even if you block a number, you can’t stop them leaving voicemails.

I was so upset my aunty gave a stranger all my personal details. That is also unhinged. Perhaps she needs her own needs assessment!

I really liked your DH’s comment. This made me feel better. It’s a great way of looking at things. It is not going to end well however well intentioned my decisions.

Thank you for your kindness.

This is insane. Why haven't you got a personal phone? You can't turn back the past but you can prevent this situation again by getting a personal phone with your own phone contract and giving that number to friends and relatives, then changing it isn't a hassle if needed. Apart from anything else it means you can switch off work phone when not at work but still he contactable by friends and relatives or your bank/doctor/anyone else in your personal life.

Your mum sounds very much like my Dad who has now been in a home for just over two years. My DM was his carer and she tried so hard to keep him at home despite the interrupted sleep, lack of mobility, the falls and the hallucinations. In the end she needed a hip replacement and he went into a home for respite care and never came out. The improvement in his health and well being has been great and although my DM still feels guilty for not being able to keep him at home, her health has also improved the the stress decreased immeasurably. I honestly thin the time has come for your mum to go into a home as well for her sake as well as your sanity.

Did you say whether you have PoA? I can’t see it - perhaps I missed it.

Please get her in a home and do not feel guilty about it. You've done way more than you should be doing and you are entitled to your own life.

If your mum will be self funding then really you don't have to abide by any assessments from social services. If you can persuade her to go into respite for a few weeks (secretly with a view to long term) and find her a nursing home who will accept her then it's between you and them. (If social services assess her as not safe at home then her discharge will be delayed until you or they find somewhere suitable for her, but ultimately she will have to pay either way).

Some hospitals have links with agencies that help you find suitable homes - Care Home Selection are the group used round here.

Obviously convincing her to go into a home AND finding one that can meet her needs are is going to be easy. Your mother's behaviour is challenging, as they call it in the trade.

Sadly there is no fairytale solutions here. Her illnesses are progressive, she is a difficult patient, her family don't have your best interests at heart. You're going to have to make some hard least-worst decisions; but that is absolutely the best you can do for her and for your family and for you.

Yes my sister and I have joint POA - health and financial.

This was set up after my mum had a terrible nosebleed in the middle of the night that would not stop, ambulance came, and I had to clear huge blood clot chunks out of the bathroom sink whilst trying not to pass out myself.

The blood clots were so large I thought she might die. That was another trauma.

We got POA in place immediately after that incident.