Sister showing signs of dementia - advice please

[Createausername1970]

Hello

My sister is 73 and started to appear a bit confused about 2 years ago. I noticed it then as she usually feeds our cat while we are on holiday. That particular time, she kept forgetting to put the dates on her calendar, I had to tell her the dates a few times, then even after it was finally on her calendar she still kept forgetting we were going.

Once this had happened, I started to pay more attention and I did think there might be an issue with dementia.

Around the same time she had been put on medication for something else which apparently caused brain fog. She was obviously aware there was an issue with her memory as she was openly saying I can't help it, it's brain fog caused by my medication.

Also around the same time she had a hearing test which apparently showed a lot of hearing loss, but she was adamant she wasn't going to wear hearing aids - they are for old people. She was 71 at the time.

So, we had possible brain fog and not hearing things properly in the mix, so it was hard to judge exactly what was occurring.

She eventually swapped from the medication that can cause brain fog onto something else and finally accepted she needed hearing aids. Things got a bit better for a while, but it then became apparent she was drifting backwards.

So roll forward to present day. My observation is that she is completely forgetting arrangements, or she can remember that something is happening but can't remember when, or she misunderstands what is happening.

Christmas was difficult. She invited us over for one day, then a different day, then a different time. Then she thought the day after Boxing Day was New Years Eve. She usually organises the present buying for her and her husband. Let's just say we had some interesting presents that bore no resemblance to anything we had suggested. Knowing that she was having issues I sent her links to specific items to try to make it simpler.

Her husband has confided to my husband that she is getting quite tricky and in a cafe the other day she ordered a meal at the counter, but when it was brought to the table a few minutes later she got cross and loud, insisting she hadn't ordered it and didn't want it.

She is starting to not want to go anywhere without her husband or not wanting to leave him. He has a heart condition, and had a bypass a few years ago, so she would have previously gone out, but checked in with him regularly, but over the last month or so she is saying she can't leave him. He says she can, as nothing has changed for him medically.

I have spoken to her husband, said what can we do to help, can he get her a drs appointment, get her on medication. But he says she gets too upset about it so can't do anything. I have offered to have that awkward conversation with her, but he says no.

Her son lives abroad, but has regular zoom calls and he has noticed something is definitely amiss and he and I have been discussing the situation.

He and I both feel that the time is fast approaching where one of us is going to have to force the issue and try to make her and her husband sort out a doctors appointment and get the ball rolling for a formal diagnosis and medication.

Are we right?

Any thoughts, comments, suggestions, dos or don'ts?

This is a very difficult one for you. I had similar with my mother. All of those around her noticed a problem but she wouldn't have it, and still won't. I ended up tricking her into a doctor's appointment when she started doing things like driving the wrong way down one way streets but insisting that it was normal and that everyone does it. Various cognitive tests plus a brain scan showed she has vascular dementia, but she still won't have it. Apparently the doctors have got it wrong.

In our case it's complicated because she has always used me as her emotional punchbag, so if ever anyone points out something she's done wrong, she blames me. She'll go to quite ridiculous lengths to blame me for anything, including things I have absolutely nothing to do with. It's incredibly, incredibly difficult to live with.

On the other hand, she takes the medication she has been prescribed for the condition and it definitely helps. Without it I think I'd have to ban her from seeing my children because she was becoming very unpleasant and aggressive.

Ultimately however it was only tricking her to the doctor's appointment that got us here. She is constantly commenting about various friends and family member she believes have dementia and moaning that their families need to do more to get them to the doctor, without admitting that she will forever hold it against me that I did the same.

Is there any way you can contact her doctor and explain, then get her there under false pretences?

I'm sorry this is happening to your sister and I don't have anything useful to suggest but your story sounds so familiar to me, so I wanted to comment with a feeling of solidarity!
My cousin (more like a sister) has been acting very out of character for a couple of years, forgetting arrangements, including asking me who it is whose wedding is coming up in June (her nephew, who was sitting at the table with us and had just been talking about his wedding). She also seems to find it hard to get a sentence out, she forgets her words and what she's trying to say. She's only 65 and her husband is very hostile to any suggestions of help. He says it's down to a food issue.
I hope you get some valuable suggestions to help your sister.

You can write a letter with your concerns to her gp so they might bear in mind on next medication review

Right now there is nothing much you can do other than continue to voice your concerns and continue to offer to help. eventually something will happen - a medical crisis, her DH will not be able to take it any more - that will trigger an intervention of some kind.

With luck it will be something other than dementia that’s fixable. However, if it is dementia, then there is little that can be done to change the progression of the disease (there’s are some medications that, if taken early, slow down progression for some people). The benefit of diagnosis is more for her family so they know what’s going on and can hook in to what support there is and to others in the same position.

I’m so sorry, this must be very distressing for you.

Thank you for your comments. I feel better knowing there isn't something I ought to have done and have been remiss.

The frustrating part of it all is that my dad had Alzheimer's and because my mum kept insisting everything was OK, it was quite advanced by the time it all went tits up. But I can understand that maybe her and her DH know, and are scared to accept it, like my mum and dad.

I have a plan, but it's slightly mean. Rather than me keep getting involved and trying to remind her about upcoming things, I am going to step back and see what occurs. As @olderbutwiser says, it might be that something has to trigger a crisis and me intervening is delaying that.

Have you had a chat with her about how you, her son, her husband and yours are all talking about her memory problems because you’re concerned. None of you like doing it, so can she please get checked out by the GP for your reassurance

My mum wouldn’t countenance the word Alzheimer’s but agreed to go to The Memory Clinic on GPs advice.

Or as PP said above , try and get her to the GP for something else and forewarn them. GPs must have this conversation often and know how to deal with it

Apparently she has been seen by the memory clinic and she was fine. But I think I read on another thread that someone might have up to 3 visits at a memory clinic before any diagnosis is made. So maybe she wasn't fine, and has another appointment coming up.

I am actually quite cross with her husband. He keeps saying don't mention anything as she gets upset it, has refused my suggestion of face timing with his son if I go out with my sister. His son wants to talk to him, but not Infront of her, but he has to facilitate it as my sister rarely leaves his side. He had a heart attack in 2000 and was given 3 - 5 years. Here we are, 25 years later, he is now 76 and not in the best of health. He could die any day, and leave me to deal with my sister. So I really want to shake him and say he needs to be talking to us and telling us what's going on, for her sake as he can't guarantee being here next month, let alone next year.

I do appreciate that my sister has been under a huge amount of pressure over the last 25 years, constantly worrying he is going to die at any moment.

There isn't anything you can do to fix this, it is unlikely she would be given any medication which will slow the progress. You say she has been seen at the memory clinic. My mother had to go back a second time before she was diagnosed with Alzheimers, but it didn't change anything, she just had a label for the disease.

So while I understand you want to try to 'do' something, having 'that awkward conversation' with her is pointless. It will upset her and she will probably have forgotten it the next day and deny it ever happened. Very very few people with dementia accept they have it, denial is part of the disease.

Your sister is refusing to leave her husband because she is scared - scared in general, and in particular scared of going out and interacting with people. It is very common for people with dementia to withdraw. It is also common for the spouse to protect the person with dementia, my FIL did this with MIL. Please don't be cross with her husband, he is seeing his wife's deterioration every minute of the day.

It would be helpful if you could persuade her to do a financial POA naming you as attorney in the event of her husband's death. That would mean you can access her money to provide anything she needs. If no one has access to her money it will make things considerably more difficult. However she has agree, and have the capacity to do so.

I completely disagree with this. While there might not be any medication that can help, having a diagnosis will unlock social care and other resources she'll need as it progresses. I would recommend getting her a diagnosis as soon as possible, if you can - but I appreciate how difficult it is.

A diagnosis can be helpful, but without it you can still get care (and Attendance Allowance) based on symptoms and needs. A confirmed diagnosis usually requires memory clinic plus MRI scan and not all people with dementia are prepared to go through this. My grandmother was never diagnosed although it was very obvious she had dementia.

But in this particular case, the medical decisions are up to the husband and his wife.

The reason I find it particularly annoying is that we went through this with our dad. We didn't realise how bad things were because my mum was in denial and was hiding it from us. It was my sister who had to pick up the pieces as I was abroad for a few months when it all came to a head.

So although I am aware it's down to her and her husband, I am just annoyed that they are doing exactly what our parents did!

I understand it looks frustrating from the outside. But your BIL is protecting your sister, and your sister has no idea what she is doing because she has dementia. And as previously said, there is limited help available so it makes little difference if she gets a diagnosis tomorrow or in a year's time. There may come a tipping point when he is no longer able to cope, but at the moment he is coping so he gets to make the choices.

Just an update.

I inadvertently brought things to a head a couple of days ago. I discussed some forthcoming plans with my BIL, not her, and she was most put out as to why I was talking to him and not her.

It did pave the way for me to have a frank conversation with her.

She did get upset and I hated having to do it, but she did admit she is concerned about her short term memory. I mentioned medication, she said she is anti meds. I said she takes something for kidneys? She said that's ok as it will improve her life and life expectancy. I said what's the point of living longer if you spend it in confusion? She didn't have an answer to that.

The upshot is she apparently has a drs appointment in a couple of weeks to raise these concerns.

I have said that in future, I will not pussyfoot around, and if I have concerns I will address them with her, whether she likes it or not.

It's hopefully a small step in the right direction.