Memory decline but refusing to visit GP

@sandyrose - I have had to read your posts several times as so much struck a chord with me iro my late mother.

Here are the difficult lessons I learnt and going slightly against the grain of this thread:

1. You will need to acknowledge that you can’t ‘force’ your mother into accepting help or trick her into medical treatment or assessment. This is the hardest lesson to learn.

2. The help will come when it’s forced on her by circumstances - eg falls. Or she has a jolt of self awareness. However, declining memory, being paranoid, a single episode of psychosis won’t trigger that help. She doesn’t lack capacity as that’s an extremely high bar. Further, having / eating mouldy food won’t constitute her being a danger to herself as in sectionable compulsory treatment!

As an aside, when a sibling did the throwing away of out of date foods, my mother was furious, upset and it damaged the relationship. And achieved nothing as she got them out of the bin and reinstated them.

3. Practical help was always appreciated - whether ordering online prescriptions, banking stuff etc.

4. My mother too declined to let anyone into the house to help (her cleaner apart), despite hospitals etc offering it. And she would fib her way to get discharged from hospital. (And absent her lacking capacity, the hospital had to take her statements on trust).

5. However, the barrier against letting a helper in was shattered when after a nasty infection and prolonged hospital stay, the hospital point blank refused to discharge her unless she agreed to a six week care package. Which she did, though without much engagement.

This upset me - but the splendid co-ordinator who got to know my mother well - commented that actually, counter intuitively, it was a positive. She was a stubborn old bird, defiantly clinging to her independence. And that was what was keeping her going!

6. After a particularly bad fall, she stayed with me for a bit. When she saw how upset I was, she agreed to have a daily carer. Not because she needed one, you see, but for me! Seeing me devastated at her state and so upset was what triggered her accepting tbe care in the home. I’m sure she knew she needed tbe care but my deep upset was the trigger. (With the door having first literally been opened by tbe compulsory hospital discharge care package).

7. Doing what we think is best for our declining parents - and what may objectively be the best - isn’t necessarily the best. Does that make sense, maybe not? Our declining parents still have agency and ultimately will be free to make their own mistakes. Like our emerging adult fledgling children. And this perhaps is the hardest lesson to learn.

Please don’t lay in to me. This is a deeply personal post that has brought back many mixed memories x

I think I'd contact Social Work, see if they can at least get a carer in once a day just to keep an eye on her.
It might be a 10min flying visit, but someone just checking on her would be good.

My DM’s memory has been slowly declining over the last few years and fell off a cliff when DF died 7 months ago.

I doubt that your DM's memory "fell off a cliff" when your DF died. He just wasn't there to cover for her any more. This often happens.

Family members assume there has been a sudden decline due to bereavement, but really it was because they were a "team" and now he's gone, and people are dealing with her on her own, and seeing the truth.

You've said this:

Before DF died she had a psychotic episode and was prescribed antipsychotics.

Which makes me think she was already developing frontotemporal dementia long before he died (I am not a doctor, but have experience of frontotemporal dementia in family members).

Hi @sandyrose If she isn't in the UK then obviously we don't know how the system works so can't give much useful advice unfortunately. I wish you the best of luck with getting her to accept the help she needs.

she had a psychotic episode and was prescribed antipsychotics. She’s better now but very paranoid, keeps accusing me of stealing from her and believes the most absurd things are happening around her.

Yeah, this goes way beyond memory issues. Thinking people are stealing from you, especially close relations, is a classic symptom. Is she on Lamotrigine now, for the behavioural dementia pysochis?

In my experience of people with your mother's type of dementia, no, there will never be any self-knowledge, or acknowledgement that there is a problem.

Do you have a Health & Welfare POA? Aside from the Financial one. That may be useful in the future.

You need to get her a diagnosis of dementia. For that is what she has. And then you can see how to help her.

Very similar situation here. The issue is my mother who has severe memory problems but has refused a referral to tge memory clinic. My father is still alive but he enables her and won’t highlight issues to professionals that would help them both. She has been diagnosed with alcoholic dementia but because she refuses to give up drinking they can’t do anything. She has also refused a referral to the memory clinic despite having scored extremely poorly on the memory screening test. She is extremely nasty and aggressive to my elderly father but he enables her.

They still say as she has capacity then she is able to refuse all assistance but as there is a major issue regarding medication, both hers and my father’s (not taking what they should or taking too much) I think it’s a safeguarding issue but no one else seems to agree. We have managed, with tge agreement of my father, to get a carer to come in for an hour three times a week which in reality is just a pair of eyes to make sure everything is ok.

Unfortunately I think tge only way forward will be some major crisis that neither of them can paper over. At the moment we’re just stuck. POA doesn’t kick in until they are deemed to no longer have capacity but it does mean medical professionals should let you know what’s going on.

Similar here but without the paranoia, she can't remember things you told her 10 mins ago, or yesterday and is a constant tizz about paperwork, cannot understand fairly simple (to me) things like how you can now get your gas and electricity from one company and don't have to get it from BG and the old electricity company. But she sails through the memory screening at the GP every time because she knows who the prime minister is and what day of the week it is or whatever. She can still do all the practical self care stuff of shopping, cooking, cleaning, washing, dressing so doesn't want carers, it's just the short term memory. It is HARD work. It's a similar fell of a cliff thing from DF going into a care home (that was sudden following a fall). Sympathy.

If she still has capacity, a PoA is of limited use.

Break things down:
A) Finances - go through these with her, simplify everything you can, and see if she will allow you to set up a separate account that has a weekly "walking around money" amount. If you put thecrest online with a password she will only remember it if shes well enoigh to deal with finances. That also protects her from scams etc. You do the bills etc online.
Finances are a nightmare with cognitive decline - DF paid off his credit card bill several times over because he forgot how debits & credits work., every month.AAnd so vulnerable to paying ridiculous amounts for things.
B) you do the online food shop for her. It gives you something concrete to discuss with her, so if her abilities fail more quickly its easier to see.
C) weekly "cleaner"/ carer (more often if you can).

I don’t know why haven’t got a framework to tackle this kind of issue where a person is in denial and becoming a danger to themselves.

I agree you have to simply go ahead to try get them the help they need. It is easier when there is someone nearby who can take the person to appointments, let carers in etc.

But the OP lives abroad, so she has limited options. She can make appointments or hire cleaners, but she is not there on a regular basis. I did not live near my mother (and was the only living relative) but I was lucky that she was fairly compliant. Whereas my grandmother who also had dementia would regularly tell the carers to go away and refuse to let them in. It's definitely worth trying the carer/cleaner angle and hoping she accepts it, but if she doesn't you're a bit stuck.

My dad is the same. He cannot and will not accept help. You need to force the issue yourself or wait till there is a crisis. You need to do what's best for her not what she wants. I agree with the poster above. Start with a 'cleaner' or someone else to start checking in on her. If you have pow start using it. Don't wait for her to ask or admit she needs help. We got the gp to call my dad and 'invite ' him to appointments to get him referred to the memory clinic.

My mum then just took him to appointments told him scans were for something else. You can't see this as lying it's doing what's best for them. It's always better to have a diagnosis. Its really sad an infuriating at the same time. I don't think enough is done to encourage older people to face up to it. Noted people with dementia often can't but the advice given to carers is pretty useless. It's basically there's nothing you can do. No one wants to say this but you lie compassionately to do what's best for them.