Sorry but need to vent - Dad with rapid onset dementia but mum is being just as challenging

[Foslady]

Flame me - I know I deserve it, but both my sister and I are been pushed to the limit by her.

She’s in her own bubble, expecting me and dsis to be able to run about at the drop of a hat. I dread her ringing or having to ring her. It’s all about how she feels, how dads behaviour has upset her, and how much she misses him how upset she is about it all.......and then repeats it over and over. I have tried to mention how much I am hurting about it all but in her mind no one hurts as much as she is, and she either dismisses or ignores our hurt, as if we have no right to grieve, and it’s more important in her mind to continually go on about her hurt which feels like a knife being twisted.
Both my sister and I work 30 miles away from where dad is so we can only get to see him at a weekend but all we get is ‘if you’re on your way up can you call at....which has meant some weekends I have see dad 10 minutes maximum.
Me and mum had a massive showdown the other week - she stays at my house one weekend and my sisters the next and expects one of us to do a 20 mile round trip to take her there - fine, no problem, but then expects the other sister to do the return journey traveling 20 miles to take her half a mile home as the buses don’t run on a Sunday, and when we said ‘enough’ and insisted she got a taxi her behaviour was abhorrent - finding ways to snipe until when she realised no one was going to argue with her found a minor reason and then just started on me for 10 minutes or so, and then when DP came in started again telling him to have a go at me for my (in her eyes) failing.
Then At the care meetings with the Nursing and Social worker she kept going on about how well he’s eating - only he’s not, he’s skin and bone, and losing weight, but it’s more important to her that she says that he’s eating more (but it’s not more, it’s just more varied).
We have tried to get her counselling to come to terms with it all but the Alzheimer’s Society when we asked said they were more for support of people at home and not in nursing homes (there’s no way dad could return home).
I know I am lucky to have a supportive sister, but it’s not dad that is causing the issues, it’s mum. All my hurt and pain I am feeling feels as if it’s being sidelined, as if my pain is invalid and I am only his daughter. And it is relentless. And I am hurting.

I’m sorry - that makes me sound so selfish. I just want mum to acknowledge that she isn’t the only one hurting. It’s been 3 months and in all that time she hasn’t once given me a hug, or said how hard it is for anyone but herself. It feels as if we are just part of her care team

We had this problem with FIL when MIL went downhill with Alzheimer's rapidly and ended up in a nursing home.

It was a real battle to get her care sorted out and when we finally managed it and thought things could settle a bit, he started being a NIGHTMARE.

Did exactly what your mum is doing. Nobody understood how bad it was for him, life was awful, on and on an on, on repeat. He was ringing all the time about the most inane things. We kind of tolerated it for a bit because he had effectively lost his wife but dear god it was relentless. We lost it with him in the end, which worked for about a week.

I wish I could say it got better. It hasn't. Although it's not so much my problem anymore because he'll soon be my ex-FIL

I just wanted to reply and let you know that it's not just you though and you're well within your rights to be sick of it.

We tried to get him to go to groups, but he point blank refused so we just had to let him get on with it and step back in the end.

My heart goes out to you Foslady and your sister.

My DM has dementia and is rapidly going down, after a reasonable plateau and it is awful. My Dad isn't coping brilliantly and has only just started asking for help, which he has denied he needs for at least the last 2-3 years. From what I can gather this is pretty standard. He has never asked how my DSis and I are feeling and to some extent I don't think I would expect him too. This is a woman he has lived with for 60+ years and he is seeing her fade away. It must be heart breaking. He has denied there was anything wrong at first and then insisted she undergo distressing and questionable treatment when she didn't have the foggiest idea what the hell was going on. (TBH HCP should have wised up, but Dad refused to let my or DSis go along to the appointments to make sure HCP knew DM's diagnosis). What I am trying to say is that you shouldn't expect insight into what is happening from your DM and there will be lots of denial of the reality of it all - it's not uncommon, in fact it's the way it happens. It's tough I totally get that.

Maybe you and your DSis should request some counselling for yourselves as it's unlikley your DM will agree or have sufficient insight to take advantage even if she agrees to go.

We have found the next generation, ie the grandchildren, have been much better at challenging and getting my Dad to accept the situation and accept help. The grandchildren are in their 20s.

You're not selfish. My DM has more or less gone - can't have a conversation with her, it's so sad, so tough. Fortunately my DSis , DP and my family are all supportive of each other. We sort of see my Dad and Mum as a unit that we need support together, not just my Mum, if you see what I mean.

Thank you so much, I really expected to get a flaming for not putting mum first. I do feel for you both going through this too, but also it does give me strength knowing that it’s not just me/us

It’s not just you. In fact it’s a very common scenario. Step back and (if you can) go to a carers support meeting - contact your dr for tour local one, or, go for counselling. Look after yourself first - otherwise you will not be able to support your parents. Sadly you have to grieve and simultaneously grow a thick skin to deal with it.
Yes you may have to take a tough stance and say to her, here is what I’m prepared to do, this is what I’m prepared, and can, get in the way of other help for you- take it or leave it. But that’s all there is. Try taking it in turns with your sister to block her calls - so you BOTH get some peace and space. United you will get through it ‘easier’. Best wishes.

No flaming from me OP - Dementia puts a strain on people in all sorts of ways, some of them more direct than others. At the moment it sounds like it's bee pushing you into much closer proximity to your mother than you would like. I can empathise, I had something similar when my Dad had Dementia, a much closer involvment with my Stepmother, who is similar to your mum, it was perhaps that most dificult time of my life, now over thankfully. I'm so sorry you're going through this.

Took her up today and yet again first words as we drive off it’s upsetting to see your dad like this’. Yes mum, and right now I am full of cold (still), has the cat put down last week (and struggling - see saw me through 10 years of single parenthood after Xh walked out and my subsequent MH issues), the corona virus potentially is going to have a big knock in effect at work, dp has been away all last week and looks like will be away all next too, it’s dd’s birthday coming up and she won’t tell me what she wants so I’m struggling to get her some stuffto open and last night I was home alone and teary about it all too.
But hey, you repeat the one phrase you know is like a knife to my heart - why give a shit about me mum?

So sorry to hear about your cat. I lost mine last year

You won't get your mum to acknowledge you're hurting, she's not made like that. Try and cut off from her emotionally. Do what you need to do but stop expecting anything from her as a human - a big disappointment to make that decision, but better than the daily disappointments.

How old is your DD?

I'm having the same trouble with my DS. But he's a grown-up so I can get away with a bottle of beer and a cheque.

Hi @MereDintofPandiculation thank you. I know I have to move on from
Mum being like this but some days it’s harder than others.
DD’s going to be 17, so one more after this and hopefully off to uni, so conscious that birthdays are going to be less and less home/mum based!!!(and trying not to go there in my mind, I already have enough going on in there!).
Dad is getting more bad tempered so the dementia we worry is taking hold quickly, - I cannot believe at the beginning of October all was just about normal.......and we have no idea when all this will end......which sounds awful to say but I have already done most of my grieving

which sounds awful to say but I have already done most of my grieving No, not at all. Understand perfectly.

17 is difficult. Wanting adult independence, finding her place among her peers, but underneath it all still wanting the security of home, so much as the temptation may be "well, sort your own birthday then" you can't do that because she needs you to run round after her to prove she still has her secure place at home.

Can't help much re your mum- mine'sthe same, . Excellent advice upthread about not expecting anything more from her- she doesn't have it. Switch your attention to what you can change and what you need to get through it.

Re dd. Have you tried planning it together? She can make suggestions (hire a hotel for a spa weekend) you can reframe them to something more manageable (three friends over for a face mask and a chocolate fountain!). It might be a fun distraction, rather than a source of stress.

Hi there - dd’s birthday was yesterday but we chatted earlier and her and her friends have arranged a day and they are all Enthusiastic about a local crafting centre with coffee and cake (they really are a great bunch of girls!), so that’s been a big relief. Having the birthday cake then too. She didn’t get a main gift but we’re going to London soon and said I’d treat her then which has been well received.
I wanted to sort out her driving licence for her but had to sort her passport first and even that was a saga - the Post Office lost it 🤦🏻‍♀️!
One girl in the group has been awful to her - a total frenemy and she’s not invited her along - I’m not getting involved but I am relieved to be honest - bitchy comments about my dad, saying that dd grew up in a dysfunctional household (?????? - her dad walked out and I think I’ve done a pretty good job in the 11 years since) and that her upbringing was also ‘quaint’ (staid with a sneer) as we did things together - oh and we’re weird because we watch TV together........
I’m going to have a chat with mum, I think she’s sinking into depression/anxiety from what she has said - she needs counselling, someone outside to talk it through with, but I’m unsure if she’ll ever get over this.
Oh, and with less than 24 hrs notice the home said there was a meeting with SS & CQC which we couldn’t get to buy mum did......we’ll just have to cope with the fallout......
The home have also given a months notice that they are going from nursing to care but with DN going in said they want to keep dad.......feels a bit like just as the dust settles another bomb goes off but I really am trying to rise above it all.....
Thank you for all being there/responding - I know this latest one I appear as though I am being a bit of a cow re dd’s birthday get together, but at 17 it’s her choice, and if the girl doesn’t like it then maybe it might just make her think about why it’s happened - at this age she really should know better