Feeling desperate!!!

[Greenfingers37]

Hi, we have suspected for several years that my Mum has dementia/Alzheimer’s. It has been fairly slow and stable for a long time but she is now showing signs of more recent deterioration.
Her short term memory is non existent and she is becoming increasingly more confused and aggressive. Her appearance and personal hygiene are now suffering too.
The problem is that she refuses point blank to have any kind of medical intervention and my Dad, who is a very fit 82 year old, is at the end of his tether. She is also suffering with a very painful knee but again refuses to go the doctor about
it.
I’ve offered to help with cleaning, washing, ironing but she insists that she can manage it (she clearly can’t) and I just don’t know what to do next. It’s like there will have to be some kind of crisis before anything happens.
I hate to admit it but I’m so frustrated with the situation that I struggle to want to spend time with her and I feel so, so sorry for my Dad. He has tried so many times to get her to see a doctor but she just loses her temper with him and accuses him (and us) of wanting to put her in a care home. Nothing like that has ever been mooted.
I completely understand that she knows she’s not well and is frightened but I just don’t know which way to turn with it and it’s making me feel so depressed!
Has anyone ever experienced anything like this? Thank you in advance.

There was another poster on here the other day, who was in a similar situation. She wrote to/called the GP and said that she didn't want her mum to know she was writing/calling, but listed her concerns and could they call her into the surgery under the premise of a 'check up' as she wouldn't come in of her own accord. Would that work, if the GP was the one to call her in? You could tell her that they're calling everyone in who is over a certain age. That might get the ball rolling in terms of next steps, as they'll give her a memory test at the GP.

Thank you so much for responding.
I probably should have said that we’ve tried that-I phoned the GP explaining our concerns and he wrote to her asking her to come in for a general well-being check up.
She refused to go. She will only ever go for covid/flu jabs, absolutely nothing else.
I’ve offered to make an appointment for her painful knee, saying that she might be prescribed stronger painkillers or given a steroid injection but she says she is more than capable of making her own appointments. She never does. I think she’s worried she’d be rumbled and I don’t think she’d agree to a memory assessment.

Would she buy being told that she was going for a covid booster jab before we come into the summer months?
Or I've had to do it before where I've taken mum out to the shops etc, and then popped by the doctors on the way home 'to put my name down for a jab/ pick up a blood test form.' I've then said that they've had a cancellation, and have managed to get her into the consulting room. I let the reception staff know ahead of time via the phone that she was extremely reluctant to come in for an appointment and that helped hugely. It didn't feel nice to do but it did help in the long run. It's tough x

Worth a try, thank you, although knowing how she is, I can imagine she will see through it. I totally understand that she knows there is something seriously wrong and is frightened but she is just so stubborn and aggressive if anyone mentions anything to do with her health/declining mobility, even in a supportive, gentle way. It’s just horrible 😢

It really is, and it can get so frustrating. Best of luck x

Thank you so much for your advice xx

to be honest, there is not much that a diagnosis of Alzheimer's will achieve medically speaking. Most of the medicines are next to useless right now and at best preserve the current brain function.

If she has short term memory problems, can you just take her washing and do it, and then return it and if she questions it, tell her she washed it the day before etc?

This is so hard to deal with. May I suggest a few things -

Shift your focus away from your Mum to your Dad.
I appreciate this may sound the wrong way around but you clearly can't get through to your Mum without causing her and you distress, so think about your Dad. Put things in place to support him. Cleaners, food deliveries, and free time. Whatever helps.

So if he wants to go a play golf once a week, get someone in to sit with your Mum so he can leave her safe.

Make contact with your local Alzheimer's Society / Aged UK groups
Absolute mines of information and wonderful support - for your Dad. My Mum wouldn't join in anything, but my Dad would. So he started taking her to a music / singing group and they both really enjoyed it. Dad still goes as a volunteer supporter.

Make contact with local social services and request a carer's assessment for your Dad
And be there when they come to do the assessment, so they get a full picture. For example you can be talking to your Mum in one room and your Dad can talk more freely to the SW in another. Make sure the SW gets the full real picture of the situation. They are the one's who can arrange care and support.

Make sure your Dad is claiming everything he can - Aged UK website is very good source of information.

I'm afraid you've already said it - it's a crisis waiting to happen. And sadly that's how the natural pathway for people with dementia and their families - a slow car crash that you can see happening but are powerless to do anything about. The only thing you can do is support your Dad and be kind to yourself. The clinical situation with your Mum will change over time and then you will be able to get people into help her wash, change clothes etc etc.

Please don't make anyone any promises about care homes. Sometimes, in fact many times, admission is necessary. Distressing potentially yes, but even more so if you've promised someone you will never allow it to happen. Give yourself that freedom.

Honestly though what are you hoping the GP to do? If she goes in, if she has a memory assessment even if she has a scan and you are told she has dementia how will that help? You know it already. It's possible she could be prescribed medication, but it has very limited effects and chances are she will refuse to take it anyway. Will she be told she has dementia? Will that help her?
Will your parents apply for carers/attendance allowance? They don't need diagnosis to do that and for her part it sounds like your Mum won't cooperate.
Very often it absolutely is crisis, usually a hospital admission that gets things kicked off.
If I were you and I am in a similar position, I would step back and allow the crisis to happen and encourage your Dad to do the same. He could go to the doctor and say he is not coping. That he needs an assessment of his needs. That he is not doing anymore. It's all very sad and I'm very sorry.
What will happen in my case is my Dad will get ill and without him Mum will not cope and have to move to a care home or accept home carers. It's a shame she won't do it now, before the stress of it all kills him.

I am so sorry for you and your dad...it is incredibly difficult when someone starts and progresses with dementia/Alzheimers.
My own mother did, she passed away 15 years ago, but the pain of those last few years is still with me.
My mum was similar, in that she refused all help, and it always led to a row when I tried to help her out. Eventually she had a fall and was deemed too frail to look after herself. Even though I lived close, she never wanted to live with me because she didn't get on with my husband.
My mum was very lovely, but a bit difficult.

To cut a long story short, she ended up in a nice small care home..and there are some nice ones around, but you have to really search them out.

Whether this will happen to your mum, I don't know, but sad to say, dementia doesn't improve, it just progresses.

I wish I could offer help, but apart from getting in touch with social services, who may be able to guide you in the right direction to get help in your area, all I can do is wish you good luck.

I agree with the previous posters who said to focus your efforts on supporting your dad.

It will take a huge effort and subterfuge to get your mum to the GP and there is little point in it anyway. The GP will try to do a mini memory test, and she probably won't cooperate. And he cannot diagnose her, he would need to refer her to the memory clinic (probably a wait of several months) and she would have to attend that appointment and cooperate with the doctor doing fairly lengthy memory tests. And then they would want her to have an MRI.

Can you see any of that happening?

And even if it does, all you have then is a diagnosis. And you already know what the problem is anyway. Your mother will not remember any of it, will deny it completely and still won't accept any help.

Sorry to sound so negative, but I don't want you to waste time doing things which you hope will help, but won't.

This is very helpful-thank you so much.

Thank you for taking the time to respond. It’s been helpful and enlightening.

You’re right. A diagnosis, even if she were to go along with things, won’t really change anything.

I’ve had a really good think about what everyone has said in response to my post and I’ve kind of made my peace with it, certainly for the moment. It’s been torturing me for such a long time so I’ve just got to do what I can to help in the meantime, otherwise I’ll go mad!
I’m lucky to have a fantastic, supportive husband who I can offload onto as he completely gets it.

My main worry is that my Dad will die first as my Mum just couldn’t look after herself. I hate myself for it but I would really struggle to have her living with us and my siblings feel the same way so I suppose we’ve just got to cross that bridge if/when it happens.

I’m sorry you’re going through a similar thing. It’s really tough.

Thank you all for taking the time respond.
It’s been really helpful and makes me realise I’m not alone.

Good luck Greenfingers37
All you can do is cross each bridge as you come to it. x

Thank you xx