Memory decline but refusing to visit GP

[sandyrose]

My DM’s memory has been slowly declining over the last few years and fell off a cliff when DF died 7 months ago. She can manage her hygiene, cooks and cleans but each time I visit I end up turning away almost all of the contents of her fridge, there is so much rotten food. I live abroad and visit as often as I can.

She doesn’t seem to get lost at all but can’t remember what was said to her only minutes ago. She’s very stressed about finances so she is constantly and obsessively ‘going through her paperwork’ but can’t understand what any of it means - bills, bank statements etc. Before DF died 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. I’ve dragged her off to the GP once, ago agreed that clearly she had memory probes but since she is refusing investigations there is nothing they can do.

She lives alone without any real family/friend support and refuses all suggestions of home help.

I feel that this situation is so unsustainable but my hands are tied. If you were in this situation with your elderly relative, did they eventually ‘wake up’ to realise they needed medical investigations and support? Or was their hand forced by a fall or something along those lines? I just have no idea what to do, I have rang every department and organisation imaginable and they all just say that nothing can be done until sh me asks for help herself.

I do have POA and online access to her main bank accounts, so at least that is something I can keep an eye on.

There isn't very much you can do.

And even if she is diagnosed, the diagnosis won't change anything, except you have a definite name for it.

If you have health POA you can only step in when she's lost capacity. If you don't have health POA, social services will step in at that point. It will probably be triggered - as you say - when there is a crisis like a fall or other hospital admission.

I arranged a daily carer for my mother (I didn't use the word carer) without her 'permission'. I just told her a nice lady was coming to help her, and she accepted it (and fortunately really liked the carer). You have POA with access to her bank accounts so you could do that, the risk is that she would turn them away but it could be worth a try. People with dementia tend to have a reflex action to refuse help, but when it actually turns up they may accept it. I used Home Instead, they were brilliant.

My DM has a ‘cleaner’ who does a welfare check. Start slowly, once a week and then build up.

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.

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.

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.

Please tell me you have POA?

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).

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.

She literally says she has in her post!

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.

I took mine to the Dr's under the guise of a 'check up' and the Dr asked her some questions to determine if she had memory issues. She then refused to go to the memory clinic but at least it was on record that the Dr had seen her. She then kept falling at home so she is in care home now and has lost capacity. She went downhill very fast.

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.

I think that with a diagnosis I can at least get her ‘into the system’ and I would hope also quicker to get her help and support if and when she does eventually loses capacity. I have assumed she needs a doctor to sign off to say that she has lost capacity for me to then be able to get various support. Where she lives, the care system is good but you need a needs assessment before being able to access it. You wouldn’t go private in the same way you do in UK. Even for home help, I need an assessment before she can get access to support, unless she pays privately but that’s almost unheard of.

My mum is very suspicious and paranoid and genuinely does not need help with cleaning. There is no way I would be able to pull the wool over her eyes by pretending, and if I tried she would lose the plot and never speak to me again (she can’t remember a lot but she CAN remember if I’ve angered her)!

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?

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.

I did get her GP to ‘invite’ her for a review but she wasn’t able to convince her to have the memory assessment. She ran some blood tests which came back fine and said to me it’s obvious mum can’t retain information for more than a few minutes but there is nothing she can do unless she agrees or loses capacity. She’s had a brain scan when she was suffering with hallucinations about 18 months ago and that didn’t seem to show anything unusual.

I have just asked the GP to invite her for a medication review (she does not take her medication) but I wonder if she will go. She doesn’t trust me at all, and she would know she was in her doctor’s surgery if I brought her there. She seems to have zero issues with spatial awareness.

Yes, my mum also does not have anybody nearby and would not let anybody in that she didn’t know. She would also know that I had arranged for them to attend and become even more distrustful with me.

I agree. This problem seems universal from what I can tell. So many people having this same problem. Denial or not recognising that there is an issue is a known component of the disease!

My DM keeps commenting on how fortunate she is to have no health problems, unlike everyone else she knows! Her neighbour was diagnosed with Alzheimer’s about a year ago, as she tells me regularly. Then she says ‘how terrible for him, I hope nothing like that happens to me!’

Thank you I have done most of this. The issue isn’t buying food (neighbours take her shopping) - it’s getting rid of out of date food that she doesn’t eat! When I am there and point out that she has packets of meat which stink and are months (!!!) out of date, she grumbles that it’s still fine to eat and I have to fight her for every item and point out the mould. I‘m quite worried she will give herself food poisoning.

I’m having the same issue. She’s excellent at covering up any signs everywhere we go - solicitors, banks etc. She has no idea what date, or even decade we are in, but somehow she manages to skim over everything and get away with it. It makes me realise she must have been bluffing for so long.

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).

This is so similar to what I was going through last 18 months with my mum being nasty and aggressive to my DF. She was accusing him
of having affairs, multiple prostitutes and they would come round at night and steal her clothes. She said he kept hiding things from her, and she was constantly running to the neighbours telling the about his mistress and that he had stopped her accessing money and keys, when in reality she had mislaid them. The neighbours would lend her money! In the end my DF said he couldn’t take it anymore, he wanted to die and a month later he was gone. I try my best not to blame her for the loss of my DF who was my world. She still blames him and his mistress whenever anything goes missing to this day even though she knows he’s dead.

Classic examples of ongoing dementia, OP.

Try and remember that she can't help it. It's an illness. Which is hard, I know. But she has clearly gone undiagnosed for quite a while.

Yes I have POA for everything and separately I have managed to get her to agree to giving me access to her banking so I can see what’s going on, pay bills etc. I don’t know how to get her a diagnosis.

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.