What to do about Mum

[FlynnD93]

Our 88yr old Mother (father died 3yrs ago) mother has been recently diagnosed with mixed dementia, Alzheimer’s & Vascular the head scan has also revealed she has had a stroke with no paralysis so we were unaware this had happened. She’s been living with my sister who was happy to have her for 6wks, she’s been looking so much better (she is physically able) but she is now insisting on returning back to her bungalow despite telling us she was lonely, and scared at night. We spent 4/5 hours a day with her to keep her in her bungalow initially for the last 8months but we then suffered constant telephone calls of her crying saying she’d seen nobody all day!! She agreed to live with my sister but now says no I only came for a break. Our older brother is championing for her to return to the bungalow which isn’t helping but he works full time so care is down to myself & sister, she has retired but I still work part time. We are both in our 60’s. She is also refusing carers (I’m not having strangers in my home) The worry is really getting me down and I’m starting to resent mum without wanting to! We both have grown up children and small grandchildren that are really taking a back seat! What to do????? I’m currently writing this at my wits end knowing exactly what’s ahead for me as it’s only going to get worse… Any advice???

If she has capacity then she can choose what she wants, but I would also set very firm boundaries - if she returns home, you’ll visit x times per week but you have your own life. Maybe sort a rota with your brother and sister so she has someone there most days. Don’t destroy your life to support her choices

Would she have someone live in? Let out a room to a student maybe, so there's someone there at night?

If she has capacity then she can choose what she wants, but I would also set very firm boundaries - if she returns home, you’ll visit x times per week but you have your own life. Maybe sort a rota with your brother and sister so she has someone there most days. Don’t destroy your life to support her choices

Absolutely this.

In a similar situation with my mum, we made a condition of her return home that she had daily carers.

Does your DM receive attendance allowance ?
She can spend it on anything to .ake her life easier & not means tested

If she goes hime

Get a recommendation for a weekly cleaner

Fall alarm

Can you get the local authority adult services to do an assessment?

Not means tested

https://www.gov.uk/attendance-allowance

You will have to say that people can't pop in all the time and what does she want night time is the worst for people who have dementia so she wil be "fine" during the day but in the evening is the problem, i think you might need to get someone overnight, maybe your brother who.is "insisting " could stay with her. Does your sister live in the same area as your mum ? Could she get a carer to start coming to her house maybe once a day so your mum is used to strangers looking after her.

Recommend getting power of attorney in place for your DM
You do not have to activate it, but have it ready
Health
Wealth
You can set it up yourself using this

https://www.gov.uk/power-of-attorney

Has anyone (GP? Social worker?) done a mental capacity assessment for the two decisions to return home and to refuse paid care? And when they did it, were they aware of the level of input that you are (genuinely) happy to give?

I would be amazed if she really has capacity for those decisions in terms of genuinely weighing up the options, so I would meet with your sister and brother and agree what you can really provide while being happy about it, and ask for the capacity assessment. Also discuss what you think is in her best interests - which you may disagree about.

In practical terms, it may end up with her trying to go home, plus a very bumpy period where she goes home, calls crying every 30 minutes, falls over, goes to hospital, comes out again etc etc. The bad news is that that could still be in her best interests. It sounds to me as if going home with carers would be the best thing to try at the moment, but you need to get your brothers support for this when she starts having bust ups and moaning about people coming in. There may be other necessary supports like a pendant alarm, which she may or may not press. It’s important to work out where to really push her (the carers) and where to let go (her home).

The thing is, with her diagnosis, she doesn't fully understand the consequences of her decision. My parents were both the same. No real advice, but sending hugs, it will be hard on you all, no matter what you decide ♥️

Will your DM be able to

Cook
Do laundry

Sympathies, OP, it's a tough time for everyone.

You'll find further support and suggestions on the Elderly Parents board.

Honestly I would not let her go home on her own unless you absolutely have to. I’ve been through this myself and it was an utter disaster, we should have absolutely insisted our relative went into sheltered accommodation/ a home well before they did.

In theory she may have capacity and in theory yes you could let her do what she wants and set boundaries, but in practice it will not work. With her diagnosis and at her age, if she goes home without care she is likely to deteriorate really quickly and make everyone else’s life miserable to boot. My relative with an almost identical diagnosis quickly became unable to use the kettle/ boiler/ cooker, forgot to eat and drink, lost tons of weight and had UTI after UTI, became incredibly paranoid (locking herself in the house), accused anyone she met of stealing from her. Was unable to deal with anyone on the phone let alone the dreaded internet.

I’d be getting distressed calls from her at all hours, from concerned neighbours and other people and she was thoroughly miserable. We eventually got her into a lovely home (basically the GP had to make an emergency mental health sectioning) but she was so thin and ill by then she didn’t last long.

I think you need to give her a few options- either staying with you and your sister, looking at sheltered housing, or at home but with a suite of carer visits and powers of attorney etc so someone else deals
with her finances. Make it clear that if she insists on going home she will very much be on her own and it would be incredibly selfish to you and the rest of the family and, in all likelihood, she’ll end up in hospital soon and they won’t discharge her to live on her own. Seems mean I know but she’s got to face reality and realise that her wishes don’t trump everything else. It’s like a toddler- sometimes you have to do what’s best for them even if they don’t like it.

Also do make sure you’ve got a power of attorney (medical and financial) whilst she still has capacity and also that her will/ funeral arrangements are settled. This might be the last few months where you can do it (hopefully not).

My dad wouldn't have carers but we persuaded him to have cleaners come in twice a week. They were from an agency so it felt like a more professional set up - they wore uniforms and were absolutely only there to clean, no cups of tea, and he liked that.

He also had the alert line from the council but didn't always wear the lanyard tbh.

Second the elderly parents board, it's in Other.
You'll probably have to put your foot down and insist on carers even if she doesn't like it. She has the right to choose how she lives but not how you and your sister live. And it will get worse. Sadly it often takes carer breakdown before they accept outside carers unless you are hard and stand back. But the choice is often let them experience the reality of not having carers or letting your own health/relationships break.

In terms of practical tips, for us it really helped getting the GP on side and you can also book people into homes for “respite” for a taster session of a week or so- then many never leave.

Also it pays to get into a “good” home/ accommodation as soon as you can, many will make allowances for current residents which they would not for people not already living there (in terms of needs, support etc). The more severe her dementia gets, the less likely she’ll be able to find a place in one of the more “lifestyle” type homes.

I do feel the stress you are under OP. You are certainly not alone in the feelings and stresses that having an elderly parent brings. I'm certain many of us have found ourselves in a position where our parent's 'independence' is entirely dependent on us spreading ourselves so thinly we think we'll snap.

In the heat of moments like the one you're in now it seems like all the decision have to be final and made quickly...they really don't. Could your mum go back to her bungalow and just see how things play out for a while? She might realise herself that it's lonely, or too much, or there might be an event that makes her see that help/a carer/an alternative is necessary. In my experience that happened quite quickly and Plan B came naturally and easily i.e. 'strangers' were allowed happily into the house.

Just a little aside. My aunt was in your mum's position....few family where she lived to help. We found a wonderful local lady who we paid a little money to who became a 'companion' to her. She would pop in every lunchtime and again after tea for a spot of company and often a glass of sherry. Auntie wasn't lonely, we all knew she had an eye on her and it enabled her to stay in her home for a year or so longer than would have been possible otherwise.

Remember that saying, "Put your own oxygen mask on first" and do look after yourself.

Sounds like she needs a full assessment by the Adult Social Services team.

I have experience of caring for relayives with vascular dementia and also alzheimers. It's highly likely as these develop that her body clock will go out of whack which results in night wandering and an inability to understand day vs night. Which is really, really difficult to manage if you live with someone, even tougher or impossible at a distance.

Some areas have Admiral Nurses (ask your GP for referral) who help families to navigate the care needs for relatives with dementia.

Oh gosh this is a difficult situation. The dementia means that your mother probably can't retain information for long so telling her that you will see her, say for example for an hour on Monday, Wednesday & Friday, your sister Tuesday, Thursday & Saturday & your brother on Sunday is unlikely to sink in & she will forget that arrangement. You could write it down and pin it somewhere prominent like the fridge, but as her dementia progresses she may forget what day of the week it is.

The not wanting 'strangers' in the house is a common one. My mother categorically refused to have carers for this reason. She had an alarm, but wouldn't wear it as she once accidentally set it off in her sleep only for me to appear at 3am responding to (what I thought was) an emergency. I have brother who lives a 2+ hour drive away so he wasn't able to be much practical help. Luckily I only lived and worked about 10-20 minute's walk from her house so was able to call in in the morning before work to make sure she was up, washed, dressed, had her meds, breakfast, make a sandwich for her lunch, a flask of tea and another visit in the evening. I would phone at lunchtime to remind her to take her midday meds & to check that she was OK. But, as her condition deteriorated I would often arrive or phone to find that she'd had a fall. She would also forget that I'd visited & would phone me to accuse me of abandoning her, not caring, being a neglectful, bad daughter.

Eventually, after yet another fall & lengthy hospital admission, Social Services decided that she wasn't safe in her own home and arranged for her to go into a nursing home. She died within 3 months of moving there.

Sending you hugs - it's tough.

I have experienced this. My partner and I cope. My mother lives with us. But it is exhausting. You will need carers and possibly eventually your mum might need to move to residential care. It's import5 she has kind people that she feels safe and comfortable with. Slow change and introductions. Nothing to frighten her.

I have been through very similar.
FIL had dementia. Agreed to have carers and someone to cook an evening meal. After a while, he sacked them all so DH had to sit him down and explain that if he wouldn't accept help, he was on his own.
Carers continued until he became ill with lung cancer and ended up in hospital. He never went home and ended up in a Care Home for end of life care. He died there 7 weeks later.

My mother lived at home until she was 99, but had dementia. She eventually agreed to carers but hated having them. Blamed them for things going missing (obviously she was hiding things)
She ended up in hospital and we were told she couldn't go home.
She went into the same Care Home as FIL (a couple of years apart)
I thought the problems would end, but in fact they were just beginning. In the 2.5 years she lived there, there were 5 managers and hundreds of pounds worth of stuff went missing. I could go on.
I don't think I would ever put anyone in a Care Home after my experiences,

I'd run away, as far as I could 😉 (I moved to another country to be away from emotionally abusive parents), so probably lots of projecting and unpopular opinion.
Anyway, now 45, wouldn't have ANY elderly relative living with me. Not my duty in life.

From my experience & from reading forums
Everyone says "I do not want strangers in the home"
However, this becomes impossible
Example
After a short time in hospital
Relative had nurses attend the home free for 6 weeks to assist in their health recovery
They then paid for some more weeks of help

Plus paid for weekly cleaner

Medicines delivered

Situations can change rapidly

I did shopping & other, but did not live locally

Do look at the Alzheimer's Society's website it has a wealth of information and you can chat with folk who have been where you are. Their forum is called Talking Point.