First my dad, now I think my dm has it too. Just a pitiful small rant

[Kenworthington]

Fiuuck. I feel like we’ve been dealt a properly shit hand.
Dd has Alzheimer’s and vascular dementia, diagnosed 10 years ago and he’s been in a home for just over four years. Last Monday was told he is now at the end and is now not eating and sleeping a lot. He may have weeks left.
Now I have been getting more and more concerned about my mum and I’ve realised after the last couple weeks that actually I think she has it too. I’m living in some sort of Groundhog Day. I’m answering the same questions over and over again every day. This evening, over the course of an hour, she phoned me THREE times to ask me if I was coming to see her tomorrow. THREE. I see her every day. I can’t do this again. I just can’t. It’s not fucking fair.

Look after yourself though OP. There are charities for carers and for dementia sufferers that may be able to offer some help e.g. sorting out power of attorney if you don't already have it. Sorry things are so hard for you it is really crap x

Just wanted to add, for goodness' sake pace yourself. You must protect your own health. So sorry you are going through this.

So we had the brain scan yesterday. It ruled out a tumour (which hadn’t occurred to me anyway!), he said it doesn’t show much other than usual signs of aging- slight atrophy?? I think is what he said but is referring urgently to memory clinic for next week or so. He says he thinks it’s probably dementia of some kind that wouldn’t show up on the ct scan. He said when family start noticing somethings wrong, then something usually IS wrong. I cannot believe this is anything other than the earlyish stages of dementia now. So I’ve not mentioned any of this to my mum and will wait for the appointment. When my dad was diagnosed through the same place 11 years ago, I think he had already had it for about 5 years. The consultant said he was mid stages by then. He wouldn’t have passed shy of the tests my mum had to do in the hospital. There was a small glimmer of hope that he said on the phone yesterday that when people start getting it in their 80s (rather than their 60s like my dad did) they the decline is quite slow and steady. And I’m sad to say I said to him that if she has it, I hope she does if natural causes before it takes ahold of her properly because I just don’t know what o do about her and how I will sort out her care etc. And this afternoon I have a meeting about my dads chc funding. Bloody hell what if they take it away??? Does that even happen? They said at the time it COULD happen but it didn’t occur to me at the time he’d live long enough to have it reviewed. Bloody hell. Fun times ahead eh

Oh gosh Kenworth, that sounds so tough for you. I really hope your mum hangs on to capacity and quality of life, and that it isn't so brutal as your dads, if this is what it is again. How unfair . Best of luck this afternoon.

Its very unlikely your dad’s chc funding will be removed (unless he has miraculously recovered from his dementia in some way).

Can you get a care assessment sorted for her, and are you registered as her carer? Would her care be self-funded or SS funded?

Ah thanks all. Funding meeting was fine, she’s recommending full funding continues. Hasn’t been done in fine years and things have massively changed now. It helped they saw him in his bed, he always looks worse in bed than in his chair. Which thinking about, the carers prob did that on purpose. That’s literally only just occurred to me actually.

That's a relief, at least. Clever carers if that's what they did!

Well I finally broke last night. Mum phoned me two hours after I had taken her home from a hospital appt. we had been at the hospital for her eyes for three hours. She phoned me in a panic asking what day it was because she thought it was Monday and she saw in the calendar she had a hospital appt. she didn’t remember going to it. There is no way on earth she hasn’t got dementia. No way. This is it now. I am planning to go and see her financial advisor today and get him to release some funds into her account so I can access Funds to start paying for stuff when I need to. On Monday we have an appt with her solicitor anyway to sign the updated poa forms which list just me (we had to remove her cousin who was the other person on it because she has shown herself not to be too trustworthy)and I’m going to ask for them to activate it (or whatever it’s called) at the same time. I’m so stressed. I just don’t know what to do with her. I think what she needs is someone there in the evenings. I don’t want to do it I have to but I don’t want to. I know I sound like a heartless butch. I just can’t handle it. And the worst thing is I just keep thinking that I want her to die so it can stop and not get any worse because I can’t handle it. And it’s not fucking fair. And I don’t want to think that because how shit a daughter am I who would wish for that, what a shit piece of a human to think like that. Dh is useless, he keeps saying things like well you just have to deal with it. That’s just what happens and you have to deal with it. Well it’s NOT just what happens is it? I see all these friends with their parents having a normal life and normal relationship with them and old people just going about living their own lives without bloody dementia and it’s just not fucking fair

This is really, really hard.
Both my parents have dementia, and it has nearly broken us. It is a wonder you have managed this so long. It is such a huge lot in your plate.

Does she have any help at home? Would she be entitled to carers paid for by SS? Carers 4 times a day?

It’s so unfair, you sound like an amazing daughter

Having seen my grandmother go through it, I would certainly preferred her to go sooner naturally without the dementia. We don’t put our pets through it, but we do for people for some reason. You can see through your posts how much you love her.

Make sure you take care of yourself and take some time for yourself too.

Thinking of you

No help at home and no other family. Well other than this cousin who sporadically takes her out. When my dad was ill he used to have the odd day out at age concern. Maybe eventually I could arrange that. The thing is I know she’d hate it. If you only spent a couple hours with her she seems fine, she functions. Somehow she is still managing her insulin (she’s been type one diabetic for about 50years), I guess when she is unable to manage that then I could get a carer in to administer that 4 times a day. She was very very resistant to getting any help in when dad was still at home and I don’t know how she coped with him. He was a big man and riddled with dementia was angry and aggressive . But she did it. She struggled on. Because she didn’t want carers in. Still no appointment from the memory clinic

I'm so sorry you are going through this. Dementia is awful.

Hi oP sorry you are going through this. Went through similar with my mum over many years, but it was physical and cognitive decline until she was completely reliant on me (and my abusive-to-me sibling) for literally everything. Can you apply for attendance allowance that will pay for Carers to visit daily. Or use her savings to pay for them. At least that will take some pressure off. Don't let her refuse to give Carers a chance.

My mum wanted to 'slip away' in her sleep, and I felt the same after a while. Please don't feel guilty for your feelings. There was a thread recently about this and literally everyone agreed with the OP that they would feel/ have felt the same way.

And maybe you DH could step up and visit her for a coffee once a week, to cheer her up and take some pressure off you, instead of dismissing your absolutely valid feelings of stress and dread.

The not wanting carers thing is really difficult. We had that, too.

But in the end dementia creates more victims than the person who has it, and you are one of them.

We introduced a carer at one time of day, and that was accepted after a while and we increased.

Have a look at a Dementia Clock. We have one of those and a diary kept in front of it with everything that will happen that day written in it.

to you OP. This is too cruel.

So sorry OP. I really sympathise - my dad has vascular dementia and has been in a home about 4 years now. It's awful and depressing.

Thanks for the dementia clock too they look great, have ordered three for different rooms. And also a plain calendar to go with the main one and I’ll just write appointment on each one with no details. I have all the appointments on my home calendar anyway. Do you think that will ease things?

I feel like this has been my life for such a long time now. Dd was only 4 when my dad was diagnosed, and he’d already had it about 5 years by that point. She’s 15 now. She doesn’t remember him being ‘normal’. There’s been no gap between looking after kids and looking after parents. In fact there’s been a massive overlap.
Dh means well but he doesn’t really understand. He said he could go over occasionally in the evening for a cuppa with her. But I know in reality that won’t really happen. He said at the start of the year ooh it’s going to be a good year 2020 and I said I know it’s going to be my worst and he was like you don’t know that. Well I do. And I was right. And it’s only just starting. He’s off researching lovely holidays for us which is nice and all but I’m like sil I be able to go? What’s going to be happening in my life by then? I feel like my life has been on hold for the past 15 years.

It really isn’t fair

Does your mum have enough funds to pay someone to sit with her in the evenings? You need to look after yourself first, you can’t pour from an empty cup.

When my DGM was in the earlier stages we just had to stop putting any appointments on her calendar. It just caused so much fretting and upset that it wasn’t feasible.

There is no shame in sourcing care or companionship for her. Dementia is such a gruelling condition. It doesn’t reflect badly on you if you can’t manage her alone.

I am terrible. I got cross with her. About her fucking calendar again. Then she got agitated and said I was upsetting her and she felt like crying and I just snapped and said me too fucking hell. I apologised over and over, now she’s all down and quiet and depressed and it’s my bloody fault. I’ve now escaped to do her shopping. And am hiding in the Sainsburys car park crying because I don’t want to go back.

She has money in investments. I have made an appt with financial advisor for fri because the money in her current account is running out and I have no other way of paying for anything. I have also contacted solicitor to say I want the poa put in place now otherwise I have. I way of sorting anything out. And they are beginning to get suspicious in the bank I think. I am so down today. I am thinking of going back to a counsellor who I really liked who I saw years ago. I just need to speak to someone.

She’s just text me. I think she’s already forgotten I upset her. I’ll have to go back now

Oh and I also called and requested her Gp call me back tomorrow. I want to try and hurry along the memory clinic and perhaps she can help with that

Could she be depressed? Is she coping ok with the loss of your dad? Sleeping? Those can all look like dementia too.

She might be a bit depressed too but it’s more than that. She’s like my dad was at the start. But declining rapidly.

I have been in your shoes. They overlapped a little but like you when one was in a home the other began to show signs.

What worked with us for a while was a book that sat under the electronic calendar that I could write in each day.
Mum would then read it and satisfy herself I had been that day. If she went to the hospital etc I wrote it in the book. She would check and recheck the book throughout the day. Only worked while she remembered the book existed of course.

I wrote words of love in there, reminders and a memory to make her smile.

I wish you strength and hope you find time each day to do something however small for you 💐