Supporting elderly parent from a distance - cognitive decline

[user14723038]

DM is 80, numerous health concerns but clear and rapid cognitive decline over the last few months. She is now frequently confused and having problems managing T1 diabetes. Her partner feels she needs supervision at all times. No carers in place, and she would be highly resistant to care arrangements, even if any were available locally and I'm not sure there are. I don't have POA or similar.

I live 4.5 hours away and have a f/t job so can't just pop over to hers, I really don't know what to do next as the situation is only going to get worse.

Any advice very welcome as this is causing me great anxiety!

Even without POA, do you or her partner have permission to speak to her GP on her behalf? Might be better for her partner given he is there all the time.

At my DM's GP, I had to drop off a letter signed by her saying she was happy for me to know about any health issues - prior to that the system had been them saying they could talk to me, me bursting into tears as it was a crisis and then them agreeing which is one sort of solution but not really on for any party.

She needs a memory assessment - which she prob won't agree to but might agree to a 'health check', referral to the district nurses and the community diabetes team given the problems with her insulin.

The mega crisis is what happened in our case. StepFather was caring for DM who has advanced Parkinson's. He was completely burnt out but wouldn't accept any external help.
Was positively verbally aggressive when I suggested it.
Had been whingeing for 2 years about how burnt out he was. DM refused to claim AA because their finances were separate & she didn't want him involved - although he was involved - literally doing 100% of the care for her! 🙄

He thought there was no need to get external help when she has 3 DD - 2 of whom live locally. The fact that of those 2 one is NC and the other works all the hours God sends is by the by.
Then there's me - almost 200 miles away!

DM admitted to hospital with TIA end of May and finally discharged to nursing home in Sept.
No PoA, despite me asking her to consider setting it up for 5 years. Cue StepFather fannying around re applying/not applying for Deputyship until I took it on.

It's a shit show!

I have sat in family meetings planning a patient discharge after a mega crisis with the patient sat there just saying 'my daughter will do it' and me having to point out their daughter has 3 kids under 5, a full time job, lives 100 miles away and it is taking 4 staff to move them.

Meanwhile poor daughter is in tears from the guilt.

Some of the outrageous demands would be funny if there weren't real people involved.

Yeah. Luckily my DC are adults now!

Don’t rely on a memory assessment being of any help. Even with a diagnosis, our local memory clinic were less than useless. There’s an awful lot you need to work out for yourself.
Another idea might be investigating care homes in her area and maybe speaking to a few and seeing what their procedure for admission is. It might not be time for her to move out of home yet but when it is, it will help if you have some ideas re places you like etc

Memory assessment can be helpful for other professionals to see there is a mental capacity issue going on, not just an old lady who doesn't want carers as she is private and worried about money.

I spend too much time talking about people with 'undiagnosed dementia'.

Even if you get absolutely no support from the clinic, which does happen, the label of dementia is useful to get people understanding what you are dealing with.

I haven't got time to read the whole thread but just wanted to wish you well. I have a lot of responsibility for my DM who is increasingly cognitively impaired and has a range of chronic problems. She lives close by and I only work part time but it's a huge burden to be honest so I really feel for you trying to help from a distance.

Great that you've made a start in contacting SS.

All I would say is that DM has fought me every step when it comes to having additional support. Each time a crisis has forced it e.g. Covid, a fall resulting in a stay in hospital etc. And each time she has come round to the idea and can't imagine life without it.

Try really hard not to feel guilty. You are doing the very best you can.

Oh, and I second what poster above has said re getting a memory assessment. Get on a waiting list for that asap. We're been waiting for weeks for DM so really hoping it's going to happen soon. She is incredibly good at masking so health professionals will often describe her as being 'sharp as a pin' because she can hold it together very well for 10-15 mins in an appointment. Makes is really hard to get the support you need.

She is incredibly good at masking so health professionals will often describe her as being 'sharp as a pin' because she can hold it together very well for 10-15 mins in an appointment. Makes is really hard to get the support you need.

This is why you need the assessment. There are a lot of naice older people who can pick up on social cues enough to blag their way politely through a short appointment.

And then 5 minutes later have no idea it even happened.

If she's not managing her diabetes well, that could be where the confusion/cognitive decline is coming from? I would contact her GP/Diabetic nurse because if she's not self managing, it could be a serious health concern especially with T1 that needs the district nursing team etc to step in. And once they're involved, balls do tend to start rolling. Depends on the GP of course and area, but when my Dad (type 2) wasn't managing his, we were reluctantly given a basic level of support in place. Self neglect can be a safeguarding concern, especially absolute denial of the situation and I wouldn't hesitate about using those words. I soon learned that you have to shout and fight for any help and support out there, it's a minefield.

That is my mum to a tee. I remember her sounding really convincing telling a social worker that she uses her computer to manage her finances. She's never used Internet banking in her life and DB manages her finances. The social worker was aware we were standing behind mum indicating that wasn't the case.

Be aware POA can take a very long time to come through. (One for a relative came through last month... forgot we'd even put it in... 22 weeks ago)

So if you want to be her advocate health and/or finance wise, I would print it off and present it as a "we need to get this sorted out now" type thing.

Yeah, that's exactly the sort of thing that happens. DM sounds confident, stays on 'safe topics' and is really good at convincing people how independent she is and will talk about what she cooks etc when in reality she needs someone to prepare everything for her, put it in front of her and then make sure she eats it. She's also really good at relaying news she's seen on TV or heard on the radio in a way that makes it sound as if she's very abreast of what's going on in the world. But she often can't tell you what day or date it is, or how long she's lived where she's lived etc.

It needs someone who really knows what to look for, or is able to spend a significant length of time with her and that rarely happens.

Did you miss the part where OP said her mother has rapid cognitive decline? Turning up with the forms and making her sign them is incredibly immoral and manipulative. She is not of sound mind!

I dont think it is immoral at all, people with cognitive decline have higher and lower moments, its how the disease progresses. the OP will be able to choose a lucid moment and quite frankly is far more likely to know her mothers wishes and care for her better as her POA than some random person assigned as a deputy or whatever the government does when there is no POA and someone is no longer capable and has to guess what the person would have preferred

22 weeks - that's speedy. Deputyship is currently taking 12-18 MONTHS!! 🤣🤣😮

@InterFactual rapid cognitive decline doesn’t necessarily mean that OP’s mum doesn’t have the mental capacity to make this particular decision. It would definitely be worth talking to her about because it has the potential to make things much easier going forwards. OP’s mum could give POA to her partner and not OP but that would be fine too

Rapid cognitive decline doesn't necessarily mean you don't have capacity to complete a POA.

You may not be able to cook a dinner or wash yourself and think Maggie Thatcher is still Prime Minister but able to be clear that you trust your spouse/adult child to look after you and make sure the bills are paid.

On the other hand I meet a lot of relatives panicking about POA and I have to break the news that they have left it too late.

If you can only get one done, make it Finance.

@InterFactual it's not that bad thankfully, she definitely knows what is what but as pps have said, better too early than too late.

@SkyFullofStars1975 DM and I think this is a major factor. She has always been very proactive and well-informed in self-care. I will try to speak to her GP ASAP re better support.

My DM had very wisely set up the old style P of A long before she developed dementia, but by the time we needed to activate it (she had to agree) she was very suspicious and reluctant, accused us of just being after her money.

But we couldn’t delay - a cheque for some £4k had already gone missing and been cashed by God knows who.* She was no longer remotely capable of handling her finances.
Dbro (one of the named attorneys) just had to get seriously tough - sign here, or else.
Sometimes it’s a case of needs must.

*Dbro did try to trace it - IIRC it had gone through one of those dodgy ‘cheques cashed’ places, no questions asked.

Sorry @AnnaMagnani you are right, an assessment/diagnosis of dementia IS useful to have, as you say, so certain people/services know what they are dealing with. However in my experience, the local memory clinic were no support at all, presumably as we were managing things at home and therefore weren’t a priority.
Sometimes being seen to manage is actually a disadvantage.

Same situation, sympathies.

How fit and well is her partner?

@Lampan you are absolutely right that what people are expecting from memory clinic isn't necessarily what you get.

Some will do diagnosis, getting the person on meds (which are v far from brilliant) and that's it. TBH that's pretty much all my FIL's did which led to the family focussing far too much on the medication, which did very little, when the real problems in their lives of caring for him, respite for MIL weren't even touched on.

For fear of sounding harsh, it is not your problem to solve, if your mother and partner dont want to spend money to make their life easier, that is not your fault. Living independently means exactly that. If they choose to make poor decisions they must live with the consequences. They can be as resistant as they like, hoarding money is obviously more important to them than your happiness.
My parents were dreadful and didnt want to pay, we were exhausted explaining their limited options. The inevitable crisis happened.
Dont be forced or guilted into a situation not of your making. I would not apply for POA as everything will get kicked back to you and you may come to regret it. Leave it to the professionals, social services, care companies, your mums GP and her partner, he doesn't get to dump it on you.
*I say this from my perspective of lifelong difficult parents, you may have a much nicer relationship than I had.

@AnnaMagnani my mother would tell the hospital that I would care for her, they know I live in a different country.

I get it is hard as they are entitled to make their own decisions, I just have to let them get on with it, lurching from crisis to crisis. Social services did ask if I could move back home to help but as my childhood was one of neglect by 2 violent alcoholics I feel no obligation to. I am just grateful there are professionals who know what they are doing.