Next steps for DM refusing help

[Blutopia]

DM is 82 and in her 3rd year of alzheimers dementia. She lives in a 1st floor apartment (with a lift and stair lifts), independently but with a house manager on site Mon-Fri and an emergency careline service. I have POA which is activated, and mum has about £40k in cash savings plus the value of her property.

DM hasn't been managing so well recently - her legs are weak and she's fallen a few times, and she's increasingly confused about her environment although still has very lucid days. I've been doing more shopping and washing for her, and we gave her flat a thorough clean and are trying to stay on top of it as it was becoming a bit unhygienic. DH and I both work full time - I am field based and could be anywhere in the country during the week - but we live 30 minutes away from her, and my only other sibling lives in NZ.

Last Friday mum pulled the red cord because she hurt her back so badly that she couldn't get up - she can't remember how she twisted it but she does have osteoarthritis and osteoporosis. I was there within 30 mins and have been going to her twice a day over the long weekend, keeping her dosed up with paracetamol and nurofen gel. She can get to the loo unaided (just), so the GP didn't think hospital was necessary when I called them, much to her relief.

It is improving slowly which is reassuring, but I think she really needs a daily drop in carer now, and maybe meals on wheels so she is eating properly, but she resists every time I bring it up. Insists that she won't like the meals, and that she won't know the person calling in on her so she doesn't want them. I've tried 4 times and she shuts me down!

How can I convince her? I just can't be there every day but I feel really anxious about it because I feel I need to be doing more. She keeps saying how sorry she is to be a nuisance (whilst her back is bad, but I think it will get better), but won't let anyone else help apart from me. I don't know what to do next, I'm struggling to even get her to a dental appointment because none of them have parking and she could only walk a very short distance even before this flare up in her back.

Her neighbours are very kind but none of them want the responsibility of her, understandably. It's my first day back at work tomorrow after 2 weeks holiday, but I already have a long list of calls to make for mum - the house manager to update her, the local Alzheimers Society rep to update her, find a new dentist who will take a dementia patient, find a mobile female hairdresser, appeal the attendance allowance rejection, try to arrange meals on wheels and a daily call in service without actually telling mum that's what Im doing and think of an acceptable way to pitch it to her...I feel overwhelmed.

Have you called Adult Social Services? You need to have her needs assessed. Make it very clear that is NOT independent as she’s became reliant on you, as much as you love her you are not her carer, explain that the decision is yours now regards getting help as you cannot physically do it all.

No I haven't, is that what's needed? I thought as she will have to pay for her own care, we were responsible for organising it under our own steam?

Bookworm4 is right. That's the next step. She needs an assessment of care needs visit via the Adult social care team. Also, sorry to hear about the AA. Did they turn her down? Because she sounds eligible, and you could then use the money towards care. It's a horrible disease. I'm sorry you feel overwhelmed.

Even if you have to pay, you should still get a social services assessment as they will then organise the care they decide she needs. Also then when her savings fall below the 23K threshold she won't have to pay the whole cost any more. The property value won't come into it while she's still living there. Ring and say what's suggested above and tell them you have POA. It is very common for elderly parents to insist they don't want care and just want their kids to do it all. Social services will have seen this before.

Wow, I didn't even know that. Yes, she was rejected for AA, although the AS rep said that wasn't unusual.

Ok I'd better look into it then. I don't want mum to feel railroaded or distressed or like she has no autonomy - she still has days when you can almost pretend she doesn't have it. We are quite close and I'm wringing my hands at the thought that she might feel abandoned by me. She certainly doesn't expect me to do everything, she just doesn't want anyone to help at all really!

Thank you all, by the way. I need to break this into manageable chunks. Work is shit at the moment as well so I think I'm just feeling a bit dragged down by everything! It'll pass.

I wish I had the answer for you. I went through similar with my parents. My Mum had dementia and my Dad cancer. He simply could no longer manage his own needs and care for Mum, who had always done all the cooking etc. Things were really falling apart.

I lived a 3 hour trip away. For a while I batch cooked and took them food. This required a weekend stay. I also got Mum, with much persuading, to take a shower or bath. As Dad became weaker it became obvious they needed more help but he would not accept it.

He always said my Mother didn't want strangers in the house.

We got them a cleaner which helped for awhile but they fired her. We arranged delivery of frozen meals which worked for awhile until Dad became very worried about the freezer and space.

We got Mum's meds put in blister packs and delivered, as she had stopped taking even her thyroid med which was serious.

When Dad fell and was in hospital my siblings and I had to take turns looking after Mum. This required extensive travel and time off work.

When he was discharged we moved them into assisted living. This was barely tolerable for them but really there was no choice.

They both died 6 months later when a bad flu went around.

I have said all this because I think if I had it to do over again I might be a bit firmer with Dad, although I certainly tried. Everything became a crisis. For example, when Dad fell, a neighbour called my brother who called me. I had to call Dad's oncologist to get an ambulance as Dad was refusing. All of this long distance.

Would you Mother accept something like a day program? Or a visit daily from a "companion" to chat with etc? The more connections you can put in place, the better. I know my Mum was horribly embarrassed about her dementia and wanted to hide away. My Dad was an intelligent and accomplished man, but it all became too much.

The other thing I wondered about was your Mother's GP. Can you speak to him/her and let them know the situation?

Hugs to you. It is so very hard.

Your mum says she's sorry to put this on you, but that doesn't stop it happening now or prevent it from getting worse. You cannot become a carer and cannot fit it around your work. None of this is your fault.

When the assessment is carried out hopefully a carer package can be put in place. With far more support she may be able to stay at home, but there is likely to be a time that she is hospitalised and moves from convalescent home to a care home.

My sister is the other side of the world too, it is tough when family changes and pressures are on one sibling.

she just doesn't want anyone to help at all really!
This is the most common issue with elderly parents, the reality is it’s no longer a choice; she NEEDS help, and as difficult as you find it the time seems to have come where you need to make these decisions. I understand your concerns but you’re the one with the capacity to do that, it’s so common for elderly people to insist they’re independent when they’re barely getting by and are reliant on people. Also they can be incredibly selfish and not care about the impact on their families. Make ASS your first call today.

Social worker here! Definitely contact social services to request a care act assessment as it may sign post to other support out there too. Just to advise it’s likely a mental capacity assessment may be carried out as part of the care act assessment to see if DM has capacity to agree to a package of care or whether one would be arranged in her best interests. If DM has capacity to decide about agreeing to care and refuses still it may be at this time she is making an unwise decision.
As she is over £23,000 she would be a self funded paying the full cost for any care. The financial aspect should be explained as part of the assessment too.

As her savings are over the threshold you will pay but it is worth an assessment because your mum may accept their advice more than yours. Ultimately if she doesn't have capacity to make decisions you can think about moving her but in the interim a daily carer is a good first step

I thought as she will have to pay for her own care, we were responsible for organising it under our own steam? The way it should work is 1) Social services assess needs 2) Council does a financial assessment to see how much she should contribute to meeting those needs.

Some Councils are a bit inclined to leave you alone once they realise you are self funding, but that's not how the system should work. Since the house isn't taken into account if she's still living in it, suggest you just keep quiet about any savings until you've had the assessment.

Check whether meals on wheels is available where you are - apparently only 40% of Councils still do it. Ours is very good - they regard it as part of their responsibility to also check the person and let someone know if the person isn't up and around.

Ultimately, the only way you may be able to convince her of the need is to let her take responsibility for the decision, ie don't be there for her.

Two strategies, neither much fun but needs must:

Explain to your mum that it is essential she trusts you and does what you ask because the alternative is going to be a secure care home at this point. You want the same for her as she does - independence for as long as possible but this is only possible if she accepts help. Keep focused on the trust element. This has worked really well with my mum who now accepts care because she loves where she is rather than because she realises she needs it. It sounds a bit bullying but I know on some level she realises it does come from a place of love.

When/if the time does come for more secure residential care, a friend told me what had worked was initially saying it was for respite, a break. By this time her mother’s Alzheimer’s had progressed to the stage where she had lost a sense of how long she had been there and continued to accept her respite break for the rest of her life. Again this sounds cruel and the opposite of the honest way we want to treat our elderly parents but it worked for her and her mum. I will certainly consider it when and if we get to that stage. I am hoping that my now more cooperative and settles mum will be able to remain where she is - they do end of life care with onsite caters but they aren’t a secure specialist unit so it will hugely depend on her complying with ever increasing limitations.

She has enormous dignity in her memory loss but I do realise this may not be enough at some point in the progress of this hideous and cruel disease.

Currently she lets carers clean, give her medication, sort her clothes/laundry, take her shopping, encourage her to drink, monitor her fridge, prepare her snacks and ‘make’ her eat at the onsite cafe at lunchtimes. ‘They make me eat here!’ said with a big smile. They are the most incredible team and we cannot believe how lucky we are as she has strongly bonded with them and trusts them.

She could still go out independently - there is nothing to stop her as it is independent living with care on site- but increasingly she doesn’t - she seems to have an amazing sense of how to live within her limitations which is such a relief.

Definitely time for a Social Services assessment. Otherwise you’ll wear yourself out trying to help yourself. Do a trial of Wiltshire Farm foods, they aren’t bad.

I am reading all the replies, thanks so much for your wise words and shared experiences! Drowning in work, back later.

Meals on Wheels aren't available where I live. MiL has Wiltshire Farm Foods and a carer goes in at lunch time to prepare her meal.

Where my parents live, if you are self funding SS won't organise care.

If your mums main need is to have the apartment cleaned, and is worried about not knowing who will be there, you might be better looking for a cleaner. My cleaner used to do 2 hours a day for a gent - she'd make him lunch, do a laundry load, put laundry away as well as cleaning.

My parents need care, and they have an independant carer who visits 5 days a week normally which has worked brilliantly

Sending 🤗 . Reading as my parents with dementia refusing help. I cant do it on my own, i am mid divorce with asd kids and work part time. Its a nightmare.

Grocery shopping with parents and kids nearly gives me a breakdown.

She has actually declined significantly since I started this thread.

She developed a UTI which is now under control, but also became very weak and exhausted and has even had a mystery gynae bleed. Doc has been back and identified a very low heart rate and low blood pressure, which may account for the exhaustion and weakness. The other issue will have to be investigated by a specialist so I'm waiting for an appointment.

She has the emergency IFIT team going in every morning to help her get up and dressed, but that cover ends on Friday. I'm trying to arrange a care package but I can't set it up that soon, so I need to call the IFIT manager to see if they'll extend until the new care can start.

This morning she refused to get up and said she just wanted to be in bed - she doesn't feel unwell, she's just in horrible pain with her back and feels drained. She can barely walk, her legs are so weak.

I'm at a loss, I don't know how the hell I'm going to get her up and dressed and out to the car and to the surgery for blood tests etc, she's just not well enough. I called the GP again and asked for a call back today, they were very kind but just said see how she is in the morning and try to bring her, as an ECG can't be done at home.

I'm starting to think she'd be better off in hospital from a medical perspective, but she would hate it. I can't believe she's gone from living largely independently with some minor deterioration, to needing round the clock care just to get dressed, eat and go to the bathroom.

Residential care has even crossed my mind in the last couple of days...I wanted her to stay at home as long as possible because that's where she's always felt safe and secure. But she doesn't recognise her flat now and thinks she's on holiday, she keeps asking me what her room number is.

I don't know what to do for her. She still has a degree of capacity so I don't think she's far gone enough for residential care mentally - I never expected this physical decline though.

I’m so sorry. She may well pick up again- could temporary stay for rehab in a care home be possible? It doesn’t have to be forever- gives you some breathing space?

From my experience, (Mother and MIL) with dementia, leaving interventions until needed will already be too late. It's very hard for someone with dementia to adapt to changes.
Urine infections can cause quite alarming symptoms in the elderly and even more so when dementia is involved.
Your Mum may rally but you do need to think very carefully about how she will need to live in comfort and security once over this bout of illness.
I'd suggest you are entering the zone where your support is not going to be enough.
My MIL has recently gone into a home and is well cared for but doesn't like it very much, but it's the only feasible option for her and us.

Thank you both. I have managed to secure the emergency team for an extra 3 days, and a private (very expensive) care package can start next Weds with only a one day gap in cover. I called the docs and said I didn't think she was well enough to bring to the surgery for her ECG etc, but they just said see how she is tomorrow.

I am slightly encouraged by my visit to her this afternoon though - she is very much brighter, back to being saucy and bloody pedantic, and back to being only her normal level of confused. She had taken a stumble at some point in the day, I could see by the wreckage of her side table that she'd fallen at least part way - but she remembered she'd had it, said she got up okay and we checked her over for new bumps and scrapes and found none.

She'd also taken 2 days worth of medication which isn't ideal - she'd obviously gone out to the kitchen for the first time in 2 weeks and had a nose at my notes to the care team, decided it was Wednesday and took the meds out of the dossette box. But she'd had her meals on wheels, eaten the lot, followed my instructions to take the 2 antibiotics I left out for her, and tucked the debris from the meal away in the dustbin, so she's moving around again even if she is still in extreme pain. Bit worried about her falling again, obviously.