Am I horrid for thinking this?

[MyMumhasDementia]

My mum is waiting for a Dementia diagnosis but it’s absolutely clear to us as a family that this will be confirmed.

⚫️She has no idea of time/day
⚫️She thinks I am her mother
⚫️She cannot remember words and conversations tail off to nowhere
⚫️She quite paranoid
⚫️She’s got aggressive
⚫️She can spend hours wandering
⚫️She hates me as I refuse to let her get a job

The list goes on.

My friend is going through similar with her DF, but he’s just been admitted to hospital with pneumonia and is on EOL care.

Im ashamed to say I envy her.
mum so close to having a nervous breakdown and can’t see any end to my mums viciousness.
My mum is no longer my mum and I know she can’t help it but I need a coping strategy as I can’t cope much longer.

Please help 💔

(Shes in a care home and the staff are in no doubt regarding a diagnosis)

You are not horrid at all. You love your Mum and hate seeing what she has become. I have worked as a nurse for many years now and see everyday the complete lack of dignity and quality of life that some elderly people have, it would break my heart if it were my parents too.

No, it's not horrid at all. Dementia is an awful awful disease

Not horrid at all. When my DF had a serious chest infection (he also had dementia) I was given option by GP of hospital or care at home. I opted for hospital. I believe it saved his life. I also believe he would not have wanted the 3 years that followed - he never went home, he was deemed not well enough. He went to a nursing home where he slowly deteriorated to a pitiful end. Had he been given the choice I believe he'd have preferred to stay at home and most likely die then without having lost all dignity and all ability. I didn't realise he was so close to losing quality of life and in retrospect I made a decision he would not have wanted if he could make it himself.
Dementia is cruel and wishing for EOL is often a release for the person. For the last year of his life I wished for a peaceful end for my DF but he just deteriorated to a point you wouldn't think possible.
It's not horrid when a person isn't happy.

You know she can’t help it and you know she’s not your Mum any more. If you can’t detach emotionally, then back off on the visiting to a level you can cope with. Your job now is basically to make sure the care home is treating her right.

Techniques I use to detach - basically react as if I’m observing a lab rat. “If I say this he reacts like this”. Interestingly, I’m finding that I’m now noticing more the capabilities that he still has, and the glimpses of my old Dad. But no-one would ever describe my dad as “vicious” so I have it a lot easier than you.

She says she will never forgive me for ’putting her in here’.
It wasn’t just my decision. It was made by the family including my dad who was taken into hospital meaning she had to go and be looked after.
He has since died 💔

She won’t accept anyone else is grieving and is furious that I still have a husband and she doesn’t.

The decline in 6 months is monumental and she’d be mortified at her behaviour.

You're not horrid at all. You've lost the person who was your mum, and a very angry stranger has taken your mum's place. Dementia is terrible and there is no definite pattern to it. There is no point in trying to reason with a dementia sufferer. The only thing to do is to change the subject when your mum becomes argumentative or difficult. Could you chat to her about her schooldays, childhood, pets she once had, things like that? Listen to music she used to enjoy? Show her old photographs? Do a jigsaw or draw a picture with her?

My sister-in-law has got Alzheimer's and is similar. She's 69

People are shocked at DH saying very similar things about his own mum, OP. My parents' deaths were broadly premature but comparatively quick. But it's exactly what she expressly wanted when she was in her right mind. She'd worked in care homes and never wanted that kind of decline for herself. Who would? The dementia and confusion are a living nightmare for her, and she responds to the family as though it's all something that's been done to her with our agreement. So yes, she can be vicious, and aggressive. It's a horrible thing to watch someone go through.

My dad died far too slowly.

He couldn't walk or sit up, couldn't speak, and didn't know who he was or where he was. He was also in pain.

I was called cold and heartless by several family and friends for wishing him away. I just could not bear to witness such suffering. His life had ended. He was no longer him. He was just a demented suffering person and it was hell to watch.

I’ve tried so many distraction techniques but she does this heavy fast breathing which the staff say is just for attention. Then she starts sobbing.
It’s a perpetual circle.

She won’t accept anyone else is grieving and is furious that I still have a husband and she doesn’t That’s normal grieving isn’t it? I had a phase where I was close to hating friends who still had their mother

But to actually try to hit my husband - surely that’s not normal grief?

No it's not normal grieving behaviour but normal for someone with dementia I'd say.

I really empathise with you OP. I have cared for relatives with dementia. It is so hard to see the person you love disappear. It's also very frustrating at times.

Dementia can sometimes manifest in lashing out and anger Your mum can't help it . Dementia is often accompanied with depression. It's hard to take but you can't reason with someone who is losing their mind. They often go round and round in circles saying the same thing over and over again. Sometimes, as in the case of my relatives they become calmer as the disease progressed which made it easier but sad nevertheless.

When it becomes difficult walk away and take some time out. Distraction can sometimes work. Looking through old photos, listening to the music of their youth, colouring books. I bought some books on Amazon which have various memory lane photo books which can be useful as prompts to chat about.

Ultimately with one relative we did find a care home because they were not safe without 100 per cent care . They were wandering and getting lost and getting lost at all times of the day and nighy as well as falling. It was a hard decision but the right one.

Good luck OP

You are not awful for wishing an end to this. We know there is no recovery from dementia. In the normal course of things she will get over the agitated stage and then become non verbal and much more compliant. Not exactly a joyful prospect but maybe less stressful for you. I went through this with my father, and I envied people whose parent had cancer. At least they are all there, able to make decisions for themselves, do not turn aggressive ( dad tried to assault me in several occasions when I was trying to stop him doing antisocial/ dangerous stuff) and appreciate help and support form their kids. People with cancer also don’t burn through their savings paying for care.

And parents with cancer don't on the whole get bitter and paranoid that their families have had them 'put away' to get their hands on the parents' money. Hah.

I've long found it frustrating that the only effective way to manage DM is as though she is a toddler- but it must never look like that to her or anyone else! It is not easy.

I totally understand. My Mum had dementia, was diagnosed last Christmas and died this Boxing Day. I lost my Mum 18 months ago. She didn’t know me (I’m her only child), didn’t know my Dad or her beloved Grandchildren.
I have spent the last year in a permanent state of anxiety, waiting for the phone to ring with either an issue to sort or a medical issue. I haven’t slept or relaxed properly for a year and quite honestly I don’t know how I’ve coped. She passed away in hospital which she was since the start of October. She was so frail and only weighed 30kg so I was expecting it soon but in the end it happened very quickly.
Im upset obviously but I cannot grieve the person in that hospital bed because that wasn’t my Mum. Dementia had reduced her to a shell of a person and she would have hated all she had to endure.

You're not horrible. It's so stressful to deal with and also reflect back on knowing how your dear mum used to be before the dementia. It's heart breaking.

For what it's worth, my grandma is 98 and her dementia is quite bad now. She's in a care facility and my dad is literally counting down the days until she passes. He's been quite vocal about it which is also hard to take because who wants to hear someone's child wishing one of their parents would die

I say the last bit as me who's related to them both. Obviously I've grown up with both of them so it's hard to hear a family member wish another beloved family member would die. But everyone is thinking it. But it's still hard, even though I know it's for the best

My grandad was so violent it used to take 5 men to hold him. It was horrendous.

If she is very violent and has high needs to you can look at asking for Continuing Healthcare (CHC). It generally doesn't apply to dementia patients as they are deemed to have social care needs but where their needs are extremely complex due to violence etc it can be reasonable. My grandad's care was funded, but I had to do a lot of reading about it and push the right buttons in terms of what was discussed during the assessment.

Same here I got CHC for Dad but it was basically because of his challenging behaviour.

Lovely you're not awful at all. Dementia and any form of cognitive decline is one of the few occasions where it's as though the person has died twice and it's absolutely bloody horrendous. We wouldn't put an animal through the suffering our loved ones have to go through. Get plenty of support, in real life as well as online. Maybe see if there are any dementia friends groups in your area who can help you through this practically as well as emotionally x

Sorry for your loss mrsconradfisher. After dad died I didn’t grieve much as I’d done that over the 5 years of his decline. He had no idea who I was, had forgotten my mother, didn’t talk or walk. It was a relief.

That's dementia

If she's that angry and distressed I'd suggest a review of her mental health by the GP as well. I'd date the start of a calmer time for us from when my mum was seen by the community mental health team and started on some proper medication. Before that... I don't like to think about that time.

I'm quite blunt about it; my mother should be dead and I will be happy when she finally dies. Her wishes have been ignored by every team that have looked after her because she didn't sort it out legally beforehand and even then we somehow have zero pathway for someone who has quite clearly lost everything that made life worthwhile to her. The situation is calm now and we just have to endure it. It's not easy. But you DON'T have to be hit by her; ask for a mental health review.