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?

Didn’t want to read and ignore. This definitely sounds like it is time for her to go into a home. I hope you get whatever support is needed to make this happen.

I don't have time to answer fully now but I just want to say that my father has advanced Parkinson's and there is absolutely no way I could be his main carer as well as being a parent to a young child.

The only reason my DF is at home is because my mum is there caring for him 24/7.

There comes a point where it's just not possible to continue the situation as it is and it sounds like you have reached it.

You’re going to come up against your Mum’s wishes her. Unless she is considered to not have capacity to understand the situation then she is free to make whatever risky decisions she wishes.

Is she in hospital now? You need to tell her assigned nurse and the discharge coordinator that you’re nolonger able to provide any support due to carer burnout.

Thank you for responding. I’m sat here with tears streaming.

The hospital are due to call me (again - the calls god the calls) and are going to arrange a meeting with a social worker. But since the hospital have never once themselves insinuated she is ‘care home level’ I feel as though they will not recommend this.

I discovered today mum told the discharge team she would like to go home and is willing to accept the 6 weeks of carers you get after any hospital stay.

From going through this many times, I know this means she will have the 4 times a day visits from someone who will ask her if she needs anything, she’ll say no, they’ll
stay 10 minutes, then leave her. After six weeks, there’ll be no care and we are back on the rollercoaster of hell.

The discharge team told me that my mum told them I live ‘two doors away” from her. I do not. I live a 15 minute walk away across a railway line and at the other end of town. I suspect mum has deliberately insinuated I’ll be there at the drop of a hat to provide care and catch emergency episodes. I can not.

This exactly. She can only be discharged to a safe environment - even if she has capacity. If you decline / refuse due to your own personal circumstances they will have to investigate a home as she doesn't sound safe to be left alone so even carers going in 4 x daily will be insufficient.

Hard though it is you need you stand your ground and protect you and your immediate family. Caring is a mostly thankless task which all the time you continue to do it the various agencies will happily let you do more and more as it makes their job easier. BUT your personal physical and mental health are under stress and if you continue it will be you in the hospital bed. Time for self care and preservation.

Long overdue to be in a care home IMO. From both her perspective and yours.

As Bristolinfeb says - let the nursing staff know the situation and you are no longer in a position to care for her at home as her condition deteriorates.
Yes - she can insist on going back home, if the hospital decide she can, but you will need to repeat that you can 't provide care and support so what care package are they able to put in place.

You need to be prepared to play hard ball. So when / if they say, well she's fit for discharge and the ambulance is booked for tomorrow, say what's the care package, I can't continue. The minute you agree to cover 'only for a few days', your Mum will cease to be top priority, as you found with the ambulance. How do you think your Mum will react to being told about more home care or a care home placement ?

A lady with this level of disability should have been receiving the max care input, which is 4 visits of about 15-30mins each, spread throughout the day. Although from your description she needs 24/7 care not a drop in service.

Tell the ward staff and hold firm.

All you need to say on repeat is “mum lives alone and I am not able to provide daily support. I believe she is unsafe in her home”

I agree she's long overdue to be in a care home. Please please don't feel guilty. You'll feel worse if something happens to her. Or you end up ill from burn out ❤️

Would respite care be an option? Then your mum wouldn't think it was permanent, but she might actually find it better than she realised and consider it a permanent move. It would also give you a breather.

Parkinsonian dementia doesn't typically present as memory loss (TBH, most types of.dementia don't have that as a fiest or even an early symptom) so the memory test is of little use.

From your description there is no way she is safe at home - even with visiting carers. And you have other responsibilities, so there's no way you could provide the full time supervision needed even without carer burnout.

Ask to speak to her named discharge coordinator (they are meant to assign one on admission, not just when they start thinking about discharge.

Set out the problems you've described above. Explain that you cannot and will not help - and that your mother is not giving them truthful.or reliable information about her home situation.

Use the phrases 'unsafe discharge' and 'this will result in a failed discharge and readmission'. These have specific, audited meanings that should get their attention.

All you can do, is stand your ground and refuse to be on call anymore.

I am sure, things will fall apart very quickly once you stepped away.

Let the social worker know everything you have told us. However, if she is keen to go home and is willing to accept carers…they will likely want to try this route. When it falls apart, you can call adult social care and report your concerns. But, dont step in to support.

Hi OP

I was going to say the same thing as @WhatATimeToBeAlive . She probably won’t want to go though.

When was her last medication review? Her drugs might need to be changed.

My friends mum had regular assessments from the Parkinson’s Team and it was they who talked to her about being in care. They could advise you regarding mental incapacity.

It’s so hard. Sending you hugs.

@BurntOutCarer you have my sympathy, you are in an impossible situation and must be exhausted.

I have a pragmatic view of this. A care home is just that, it should provide your Mum’s day to day needs from being warm, well fed and safe to personal care. You should be there to visit and spend quality time with your Mum, but have your own life too.

It’s time to say enough a home is the best solution for everyone. There are some who will try and guilt you - “no” is a complete sentence.

I don’t go over daily because I can’t. I work and I have to deal with my children. So in reality, she is making her own meals and washing herself etc on her own. But it is hideous to see the battle she goes through to manage this.

I have an adult (but very young) niece who stayed with mum for a few weeks last year when visiting the country. She was horrified by the level of incapability of my mother, particularly in the night. She was forced to do some personal care she was not comfortable with.

But we don’t get through a few weeks without some cry for help/crisis. I have been the bucket which into which she emotionally purges herself now for nearly a decade since my dad died.

Every single call or visit I have a problem to fix, and or crisis to deal with. I speak to her about twice a week and see her most weekends.

But my phone can be bombarded with incoherent ramblings throughout the week, ranging from “help! Help!” to weird stuff like “Yes go on go on go on”. I can’t count the amount of times I’ve called her in a blind panic, only for her to minimise what has happened. I am often in a twilight zone thinking I am the one going crazy.

Very much long overdue a care home. Honestly, it’s well past the point of her going home. Do know let this happen to you and your family. Sending love

You need to be clear: you cannot do this any longer. Be clear to your mum, be clear to the hospital. Say you can no longer provide the level of care she needs, and are reaching the point of a complete breakdown.

There will be various attempts made to get you to take responsibility, but just keep saying no. You are at the end of your tether, and the situation isn't great for either your children or your DH. You and they also matter.

100% of course she should be in a care home.

Under no circumstances allow her to be discharged home. Ask for a care assessment. There will be someone with the task to set this up in the hospital.

OP your life is important too. We sandwich generation women need to claim our lives and brains back. We weren’t born to be 24 hour carers - and your mum when she was healthy would probably agree with that. My DF had Parkinson’s and tbh had dementia for bloody ages before it was acknowledged.

if she is hallucinating it could well be Lewy Bodies Dementia which is closely associated with with Parkinson’s. This is what DF had and it was heartbreaking and I wouldn’t wish it on my worst enemy.

does she see things that aren’t real - like seeing people where trees are outside, or animals under chairs, or insects crawling all over the floors? DF started knowing that these weren’t real, and later on that changed.

You cannot look after her.
Channel the energy you used when you refused to leave your daughter with flu and wait for 12 hours with her for the ambulance.

Absolutely. As long as you continue to do her care the hospital will discharge her. You need to step back. If they can't come up with a package of daily carers a care home is the only option.

She needs a care assessment. I suggest you contact Age UK for advice x

Yes she sees things all the time. She recently turned up at my house late one night shouting asking if my daughter was home. She told me my daughter had been at her house all day and had run off. She ran after her thinking she’d come home.

My daughter is primary school aged and had been at school all day. My mum was convinced she’d been talking to her all day at her own house.

That bout of hallucinations and confusion the hospital put down to a UTI which she did test positive for. Hallucinations are also listed as a major side effect of her medication. But yes it could also be LB Dementia. Impossible to tell . We’ve been through countless changes in medications. Nothing ever really works. The disease is horrific.

I have refused care in the past, and the hospital don’t care. They send her home with a 6 week care package. It doesn’t really help much. It ends. And it’s not long until the next trauma.

I have stepped back but it just continues.

My trauma is amplified by my mum’s sisters verbally and mentally abusing me saying I don’t do enough.

I’m now estranged from them to preserve my nervous system that is already broken.

Their abuse also makes me worry they will find some way to publicly blame me when something even worse happens to mum. And I’m not sure I can take any more of their attacks.

I am in a lose lose situation that could lurch on for years yet.

I feel bleak and hopeless. I almost want a huge accident to happen to force the issue. Which sounds awful I know.

The hospital do this after every hospital stay. She agrees to it. It ends after six weeks. It doesn’t really help much at the time anyway due to the unpredictable timings of her episodes/crisis/traumas.

Even if you did live 2 doors away you have other responsibilities and are entitled to live your own life.

A care assessment doesn't have to lead to an at-home care package. It can - and from.your description should - lead to residential care.

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.

I’m terrified if I ignore her calls she will die. And I will have to live with that forever. I’m living in flight or fight mode every day.

And my aunties have made it crystal clear they blame me for not taking each and every call my mother makes. Despite one of them refusing to be a named person on her Careline file. Because they don’t ever want to be called during an emergency. They continue to lay on the guilt if I don’t respond to each and every call, text, emergency.

Last week I was in meetings all day when mum was screaming in the streets. Sometimes she will call me up to 15 times in a row and in order ti keep my job and lay my mortgage, there are days I have to ignore her calls. My mum got a stranger to call one of her sisters when I didn’t pick up. That sister refused to go to her and gave the stranger my number, name and home address telling him to go to my house to get me to sort it out. So even when I block my aunties, they give out my personal information to complete strangers to contact me.