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 can't get attendance allowance if you go into a home.

If you are a "self-funder", you can - my FIL was in a care home for 18 months and was getting attendance allowance all that time. This went towards the sum of money he was paying for the care home, together with his pension income, there was also a deferred charge on the property.

Don't panic. Adult social care will sort out placement options. You don't have to. There will be options, likely cheaper rooms in the expensive homes. If your mum owns her own property but has under £23,250 otherwise she'll be eligible for a 12 week property disregard. Google it. She'll self fund after the 12 weeks. If over the funding threshold she'll self funding from the start (not including the d2a bed as that's nhs funded). You need to ask homes if they'll accept local authority rates once she runs out of money.

Have you considered paying for live in support? That can work out cheaper than residential care. My son's girlfriend used to do this. She got her living expenses paid and a salary. It only works if no medical care is required and the person doesn't need 24 hour care, but anyway it can allow for staying at home.

Love in care isn't always that much cheaper, especially if you have to pay for night wakings and cover for the carer's breaks ( if the client can't be left on their own for 2 hours) You also need to factor in paying for the carer's food etc

Lol
Live in care not love in! Although love in care sounds a wonderful option!

Attendance allowance is available if self-funded. It can help people pay for a better care home.

I'm talking about a more informal arrangement where you just get someone in to keep an eye on things and make meals, do laundry etc. I agree live in professional carers are way expensive.

With more informal arrangements you can run into problems with insurance and training though. Will that person be willing/ trained to deal with medication. If the client is in need of overnight care, will the carer be willing to deal with night waking etc?

That isn't what is needed here. OPs mum needs proper care and it wouldn't come cheap.

Can confirm this true too

Don't panic about the funding just yet. Check out the Age UK website - they have an excellent section on funding for care homes.

We had to self fund for our DM's care home as she had over the 23k savings limit. Everything went into the pot - her state pension, small occupational pension, attendance allowance, savings. She also qualified for the lower level of nursing care allowance - sorry can't recall the official name. You will have to accept as a family that the rainy day has now arrived and your DM's assets are going to be used for her care and not any inheritance. Our Dm's savings etc would have paid for just over 2 years in her care home - we had just started talking to the LA about them contributing. Like you the top up would have been about £500 per week.

Ask around for recommendations from local contacts.

Don't get tempted down the 'care-at-home-is-cheaper' road - it isn't. And there are a lot of advantages for care in a group setting. I think social isolation is wildly underestimated for frail people living at home.

Everyone is right that home care is more expensive once she needs 24/7 care.

It might be worth looking further afield but they won’t be any cheaper as the prices are standard - 1350pw is actually very good value for dementia - around me it starts at 1700.

If I were you I would proceed with the one you like and cross the bridge of funding if/when you come to it. With late stage Parkinson’s your mother may not last more than 2 years. If she does you can shop around to find the best LA care.

Finally I’m baffled by the managers’ responses to her age. I’ve been round a lot of care homes and dealt with various elderly relatives. The age range in care homes is huge. And some people develop neurodegenerative diseases earlier than others. For some the illness is gradual, long and drawn out, for others the deterioration is relatively quick. I don’t know what they’re about.

I agree with all of this. The different funding sources do add up.

Have you looked at the homes run by Friends of the Elderly - that is if there's one near you? My MIL was in one - part of the building was actually small flats for those who only needed occasional help, or fancied the occasional meal provided, then normal rooms and also a small dementia unit.
https://www.fote.org.uk/

I'm surprised your DM would stand out as the youngest in her late 70s; it's not that far below the average life expectancy and as a PP said, neurodegenerative illnesses can set in a lot earlier.

When my DF was looking for a home the options included a council run home and two private homes. Some of the rooms in one of the homes were covered entirely by the state payment but were smaller and didn't have a sea view. Is there anything like that on offer?

Ask people locally who have relatives in a home how they found the place.

Also, without meaning to be horrible, the average lift expectancy of a care home resident isn't that long. My DF seems to be something of an outlier as he's in his late 80s now and we're about to get into year three of his stay.

There is a turnover of residents so spaces do come up, and you'll know your DM's prognosis better than anyone on here, but two years is a long time in elderly care.

I take your point but you die with Parkinson’s not because of it. She could easily need 10+ years of care.

My mother in law is nearly 83 and apart from Alzheimer’s, I can see her continuing on for years.

My own grandmother lived to 99. I visited her for 14 years in her care home so I’m probably influenced by that. She got zero other major illnesses, and with no signs whatsoever, one day simply passed in her sleep.

I wish I had a crystal ball.

The most common age of a female care home resident in the uk is 88. The median age is also 88. The modal age at death for females is 89.

i just want my mum well and happy for however long I have left with her :-(

But she’s had it for 11 years already and has dementia so it’s relatively late stage. The risk of complications - infection, pneumonia, falls, choking etc - is much higher in these later stages and that’s what tends to cause death.

On the one hand Parkinson’s doesn’t massively impact life expectancy, on the other the average life expectancy from diagnosis is between 9-16 years depending on the study.

My DF has had Parkinson's for 16 years and I'm starting to wonder if he might just go on another 5 years despite needing a very intense level of care.

A member of our family had Parkinson's. She was being looked after by her husband but not well enough. She died of sepsis. It's very difficult to provide adequate care at home with relatives and occasional carers. Don't feel guilty!

I work in care home fees, and if mum has the cash to pay for a couple of years funded at the nice home, go for it. Realistically what happens here is that after two years, she'll be under threshold, the case will go to the council for funding. If they don't fund the whole amount, fees will be negotiated. It's in no one's interests for her to be moved, it will be detrimental to be mental and physical health. In more than ten years and five care homes I've only known someone be moved once or twice because funds have run out, especially if they have been self funding for a significant period.

Remember it's going to be in the manager's interests to guilt you into paying a top up to the full fees rather than negotiating a compromise with the LA.

That’s really useful info.

No, just no...

I work in adult social care and in my team, we have and do move people from Care Homes that do not accept LA rate. Councils are strugglings and near bankrupcy, they trying to make savings so its very unlikely they would agree to pay an extra £500pw. Yes it does happen, but its not common.

OP mother is only in her 70s, 2 years is not enough for her and it wouldn't be in her best interest for OP to think, "fuck that" and just place her mum in a high costing care home without consideration of her future.

It doesn't sound like the CH manager was being very helpful - talk about emotional blackmail about the top up fees. Very few families could afford that!

The reality is that the social services funded rooms aren't paid at the rate they're telling you for self-funders to pay, SS negotiate a deal with the home which will be less than this. Most of her pension would go on it too, leaving a small weekly amount. Yes, it's possible they might move her when the money from the house runs out but they've got to find her somewhere that meets her needs and there aren't many places that are cheaper than the prices you've been told.