Horrible thoughts I can't share in real life

[Noworrieshere]

We look after my elderly grandma. She lives 40 miles away from us (me, my family and my parents), my aunt lives 30 miles in the opposite direction.
Between us we take turns to look out for her, she has a visit from one of us every day, we call her every day. She's 94 and in ok physical health, but her mental health is poor. She inagines objects coming to life and gets horribly angry when no-one believes her. She regularly phones the police and the fire brigade and the army because her toilet is "thumping around upstairs", I can't even explain its so totally bonkers. Her boiler was "shouting" at her so the gas board came out in the middle of the night assuming there was a fault and turned off the gas to her whole block of houses until they could investigate. We've had all sorts of medical interventions and they have diagnosed her with some sort of psychosis but unfortunately she's too weak to tolerate any medication, it completely knocks her out. She is blissfully unaware that she is behaving like this, if she knew she would be so upset and embarrassed, she would be really distressed if she knew. Like so many other older people with dementia or similar.

Anyway, until lockdown we were muddling along okay, taking it in turns to look after her, she had clubs to go to, visitors popping in. It was okay.
Since lockdown my aunt has not done anything for her, hasn't even visited. My parents have moved into a holiday flat they own just round the corner from her so they can look after her. We haven't seen them since early March. I haven't visited, I have 3 kids at home, a dh who cares for his own elderly parents who have lots of carers and medical people coming in and out, so I have stayed away from grandma even though I could probably claim to be caring, since I did it regularly before.

So my parents, late 60s and in ok but not great health have been caring for her alone since March. They are exhausted. Because all her regular activities and visitors are cancelled her mental health has declined. Her conversations with inanimate objects are constant, when I call her we have a 3-way conversation between me, her and the hoover. Honestly, if you didn't laugh you'd cry. She's phoned the police nearly every day this week, fire brigade have been out once already and it's only Wednesday. They know her, they don't mind, they're obviously not busy.

I am just so sad for my poor old dad. He is run ragged caring for her, he is beside himself with anxiety that she will catch covid, he hasn't taken a minute for himself. My mum too, but she handles it better. Dad won't let me go and see her which is probably wise.

I honestly wish Grandma would just go to sleep and pass quietly in her bed, I do. She is not having a good life, my parents are having a terrible life. She has refused any residential care and dad refuses to force her, which is understandable right now.

But sometimes I just think that my lovely dad, who could have 10, 15, 20 years ahead of him is going to die of a heart attack or stress and my grandma, who has lived a good long life will still be there yelling at her kettle and will then need to go into a home. She's had her life and now she's stopping him having his. I just have these completely irrational feelings of anger towards her and I'm so upset with myself. Really I should be angry with my dad who is insisting on taking all the burden on himself but I can't feel angry with him, just her, when it is not her fault at all.

I love her, I've shared her care for years, I didn't mind. But now it's all just awful. She has lived too long. She's not having a good life. I want to cry at the thought of going back to caring for her again, but as soon as I safely can I will to save my parents. I can't imagine day care centres and lunch clubs for elderly people will be high on the list of places opening any time soon to occupy her during the day.

So there we are, would never ever say these things to anyone, I know they're unfair and horrible. Things will get back to some sort of normal again I know, and it will all be okay. But right now it's really hard. I don't even want to phone her tonight and listen to her go on and on. But I will. So I can't be a truly terrible person, right?

This sounds so hard. It's natural and not at all shameful or unkind to want a peaceful end for her.

OP I have very similar thoughts about my 96 year old grandmother who has lived in a home with dementia for years. She is not enjoying her life either, neither is my mother’s neighbour who is over 100 and hasn’t left her room much for several years. I really do not want to end up like this myself. I think as a society we really need to adapt to this kind of situation better. I hope soon people can make a care will when they still have their mental capacity along the lines of “if I lose my mind to x extent and can’t do x, y, z then I want to be refused any type of medication other than painkillers” to include basic things like antibiotics for utis etc. My other grandmother died at 93 and was so worried about losing her memory, for the last six months she started forgetting things and was distraught. Luckily for her she had an accident at home and died quickly after that. Some people still have lovely lives into their late nineties but for others and their families it isn’t a nice existence.

You don't sound awful to me OP. It's very unfashionable to say this, but I think it's a scandal - a really awful, under-discussed and under-acknowledged scandal that people are now being kept alive long after their bodies would naturally have given out, only to have their brains rot gradually. It's cruel to them, cruel to their families and carers. I want to die of a heart attack or cancer way before dementia gets me.

You are not being horrible at all, this is no kind of existence. My poor DM had Alzheimer’s, I used to wish she would just die in her sleep. She became aggressive with my Dad, it was awful. I just wanted it to end. When she died, my Father died very shortly after, the stress of caring for her just finished him.
Sorry I have no constructive advice, just don’t be hard on yourself, this is a heartbreaking situation.

Maybe we all think we wouldn't wish it on our children but when it comes to it the desire to stay in our own homes and independent (sort of independent with lots of help) outweighs our original wish to not make our childrens lives unbearably difficult. My father tries so hard not to be a nuisance, and in doing so makes himself far more of a nuisance -eg not calling for help early when it's a non-urgent easily solvable problem, because he "doesn't want to trouble us" so that it turns into an urgent large problem which is much more difficult to solve.

I want to die of a heart attack or cancer way before dementia gets me. It's strange. I've always felt that. But now Covid has hit, I'm really not ready to go.

Please don't feel guilty. There are many families in a similar situation who also wish a peaceful end to their loved one who is suffering.

I will admit to feeling resentful and guilty too about my Father who is over 90 and is very frail. He is still medically 'with it' apparently, but has become bad tempered, demanding and unreasonable: a very different character to the lovely, gentle man I once knew.

Due to the virus he doesn't get as many visits from family and is bored, lonely and irritable. He has carers in, but always wants more and doesn't understand why we can't just all drop everything and visit him every day.

It's so stressful. I feel terrible and I just want to scream 😱

You are not alone

Sausage when you say he doesn’t understand, what do you mean please?

I virtually chased my mother off the phone today, which is bad I know

I think lockdown is having a very bad effect on her, which I understand

It’s all terribly lonely oldies talking on the phone all day and then she repeats their depressing chat back to me.

She wants to visit a friend who seems to be in a serious decline. I actually think that decline might be reversible if the poor lady was allowed her normal life back!

monkeyonthetable

my thoughts too.

Wanting someone of 94 who is paranoid and psychotic dead is natural, normal, and, often, kind.

You only feel bad because you're wanting her out of the way so your poor battered parents can start to heal from the burden that is caring for her. That's no reason to feel guilty, that's also kind.

Even doctors are saying now 'He/she is living too long'. @monkeyonthetable agree with you. The plight caused to dementia patients kept alive by the NHS only to suffer is cruelty even the Nazis would have balked at.

I don't think it's unusual to have those feelings at all. I've had an elderly uncle and aunt recently pass away after a long period of dementia.
At both funerals, on different sides of the family, there was a huge sense of relief from all the people close to them. A lot of talk of them being at peace now etc. Not a great deal of outpouring of grief tbh as they had all grieved for so long already. The person they had had to deal with hadn't been the cherished love one for a long while but a unrecognisable shell of that person.