My poor Mum.. the deterioration over past few months is scary

[El31]

My mum was diagnosed In Jan at 70 With vascular dementia and Alzheimer’s and I have seen her deteriorate rapidly, prob partly due to lockdown but I’m also guessing it is just part of the illness. She has lost 2 stone in weight from just pacing around constantly and she will say things like ‘what’s happening? What am I doing? Im
Ok’ this is constant. She can’t really have a conversation apart from to say ‘I’m fine’ and other short answers but will never ask me how I am or my children, one of whom has just turned 4 months old. I need my mum more than ever but she is just not there.
is it bad that I want her to get a Terminal disease and pass away? Is that really mean? I had to wipe her bottom when I last visited as she has starting picking faeces ? My mum would have never wanted to be like this.
Dad does everything and is struggling. Hubby, myself and the kids are moving in until sept to try and support . Sorry for the long post, I just needed to rant somewhere x

 

[lemonbalm]

Hello @El31 . Has your mum had any kind of check up recently? I'm just wondering if there may be physical reason for the increase in confusion. Always best to check for those first. Two stones seems quite a lot a weight to lose too. It may be worth getting in touch with your mum's GP with an update.

One of my saddest memories of mum, who is in a care home now, was when I took her to the loo and she said "I don't know what to do". There's something very poignant about a parent not being able to do such a basic thing. It's only poo" became my mantra for a while.

You are being generous moving in with your parents until September. What happens after then? Does you mum have any carers coming in to support her and your Dad?

My mum is extremely distressed a lot of the time, despite tweaks in medication and good carers. I freely admit that, after seeing her on her bad days, I wish for a swift and pain free end for her. All the indignity of it, all the confusion, the anger and frustration, hatred of me and the other people around her seems so very cruel, such a waste of life. Occasionally, she has good days, when she is calm and happy for at least some of the time, almost childlike. On those days, I feel glad that she is alive but immensely sad at the same time. This is all very difficult stuff and the turmoil of emotions it stirs up is hard to endure. I don't think it is wrong to wish for an end to it.

 

[Norfolk Cherry]

Hello both. I agree with @lemonbalm there is nothing wrong with feeling that our loved ones' distress far outweighs the benefits of existence. You describe the pain of caring for someone with dementia so well. It's important that we have a safe space here to let these feelings out and share them. @El31 Looking back, I do regret not requesting that the GP put mum on some kind of tranquilliser at that stage. Instead, she became more and more anxious, and ended up sitting outside on her doorstep all the time unable to go "back in to that prison" This precipitated her going in to a home. My husband didn't want me to move in with her, so that's what happened. Once in the home, she became even more anxious, angry and disruptive and was put on a major tranquilliser. The decision was excruciating, but I found it really helpful to read about other people on here and gained courage from it. There comes a point where the kindest thing is to give your mum the support that only a team of people in a specialist environment can give. To me, it sounds as if you have all reached that point. Good luck and take the best care of yourself and your children, so difficult with such a young baby, my heart goes out to you all.

 

[El31]

Hello @El31 . Has your mum had any kind of check up recently? I'm just wondering if there may be physical reason for the increase in confusion. Always best to check for those first. Two stones seems quite a lot a weight to lose too. It may be worth getting in touch with your mum's GP with an update.

One of my saddest memories of mum, who is in a care home now, was when I took her to the loo and she said "I don't know what to do". There's something very poignant about a parent not being able to do such a basic thing. It's only poo" became my mantra for a while.

You are being generous moving in with your parents until September. What happens after then? Does you mum have any carers coming in to support her and your Dad?

My mum is extremely distressed a lot of the time, despite tweaks in medication and good carers. I freely admit that, after seeing her on her bad days, I wish for a swift and pain free end for her. All the indignity of it, all the confusion, the anger and frustration, hatred of me and the other people around her seems so very cruel, such a waste of life. Occasionally, she has good days, when she is calm and happy for at least some of the time, almost childlike. On those days, I feel glad that she is alive but immensely sad at the same time. This is all very difficult stuff and the turmoil of emotions it stirs up is hard to endure. I don't think it is wrong to wish for an end to it.

Hello @El31 . Has your mum had any kind of check up recently? I'm just wondering if there may be physical reason for the increase in confusion. Always best to check for those first. Two stones seems quite a lot a weight to lose too. It may be worth getting in touch with your mum's GP with an update.

One of my saddest memories of mum, who is in a care home now, was when I took her to the loo and she said "I don't know what to do". There's something very poignant about a parent not being able to do such a basic thing. It's only poo" became my mantra for a while.

You are being generous moving in with your parents until September. What happens after then? Does you mum have any carers coming in to support her and your Dad?

My mum is extremely distressed a lot of the time, despite tweaks in medication and good carers. I freely admit that, after seeing her on her bad days, I wish for a swift and pain free end for her. All the indignity of it, all the confusion, the anger and frustration, hatred of me and the other people around her seems so very cruel, such a waste of life. Occasionally, she has good days, when she is calm and happy for at least some of the time, almost childlike. On those days, I feel glad that she is alive but immensely sad at the same time. This is all very difficult stuff and the turmoil of emotions it stirs up is hard to endure. I don't think it is wrong to wish for an end to it.

Thanks for your reply.. gosh I’m so sorry about your mum, that must be terribly hard for you with her being in a home but it sounds like she is in the best place. Yes I understand what you mean about childlike, my mum is occasionally like this and I love this side of her because I get something back. Unfortunately most of the time she can’t converse much at all and has lost her spark completely, she just stares blankly ahead.. the strange thing is she knows who everyone is, she will repeat herself but she recognises people when we are out shopping And can name all her friends and their husbands and kids.. most sadly have abandoned her due to the dementia which is sad.
she has had bloods taken.. she has autoimmune hepatitis too but I don’t think this is linked to the weight loss. I do admit it’s quite shocking,especially when I bath her as she is just skin and bone.
Mum doesn’t have carers yet, she wouldn’t accept anyone else helping her. Luckily I am off on maternity leave at the moment So can move in and help.. I would love to be able to say I will give up work and continue supporting but I’m a social worker and at 33 I want to progress In my career.. if I was told she had 2 years left then i Prob would but she could go on for years. I will support on my days off but we will need to get someone in when I’m not around, even just once a day in the evenings to give her a good wash. Dad is happy doing everything else. X

 

[El31]

Hello both. I agree with @lemonbalm there is nothing wrong with feeling that our loved ones' distress far outweighs the benefits of existence. You describe the pain of caring for someone with dementia so well. It's important that we have a safe space here to let these feelings out and share them. @El31 Looking back, I do regret not requesting that the GP put mum on some kind of tranquilliser at that stage. Instead, she became more and more anxious, and ended up sitting outside on her doorstep all the time unable to go "back in to that prison" This precipitated her going in to a home. My husband didn't want me to move in with her, so that's what happened. Once in the home, she became even more anxious, angry and disruptive and was put on a major tranquilliser. The decision was excruciating, but I found it really helpful to read about other people on here and gained courage from it. There comes a point where the kindest thing is to give your mum the support that only a team of people in a specialist environment can give. To me, it sounds as if you have all reached that point. Good luck and take the best care of yourself and your children, so difficult with such a young baby, my heart goes out to you all.

Thanks for your reply, I’m so sorry about your mum, how heartbreaking ?? My mum is already zombie like and vague when you talk to her, this is before she was put on dementia meds, but she does pace So must have some sort of anxiety. She is very aware of her surroundings still and seems happy and im
Hoping a care home is a little
While off but dad did say as soon as she doesn’t know him then he doesn’t want her there anymore which is fair enough. I’m actually a social worker and I have worked and supported families like mine as most my clients have dementia.. it’s very hard when it’s your own though. Xx