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Elderly parents
Original poster

Horrible thoughts I can't share in real life

36 replies

Noworrieshere · 20/05/2020 15:39

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?

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Zenithbear · 14/07/2020 14:33

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.

Supersimkin2 · 22/06/2020 20:54

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.

RiggingGold · 28/05/2020 14:36

monkeyonthetable

my thoughts too.

LilacTree1 · 22/05/2020 22:16

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!

SausageCrush · 22/05/2020 16:50

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 Thanks

MereDintofPandiculation · 22/05/2020 11:25

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.

MereDintofPandiculation · 22/05/2020 11:24

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.

Runmybathforme · 21/05/2020 20:09

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.

monkeyonthetable · 21/05/2020 19:58

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.

Randomnessembraced · 21/05/2020 19:41

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.

Mwnci123 · 21/05/2020 19:40

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

Dozer · 21/05/2020 19:29

Covid has probably sped up what would have become an issue soon anyway: your grandmother isn’t well enough to live independently. You could encourage your parents to consider their own health and wellbeing.

cptartapp · 21/05/2020 19:25

ukgift this
Especially as the impact of your father's choices impacts the health and well being of the wider family on an indefinite basis. Not on.
Would your GM be self funding if she went into care?!

EvilPea · 21/05/2020 17:37

Care homes often get a bad rap, we’d always promised mine we would have her live with us not go into one.
She went in for respite and they said she was too much of a liability to live on her own. For hers (and her neighbours) safety she needed to be in a home.
It was a council run home and it was lovely, the staff were lovely. One of us went every day (Carers guilt and habit!) and used to end up sort of helping and chatting to them all.

Best thing we did for everyone, we got to be daughter and grand daughter again and she was safe.
But it was a difficult thing to say, in a way. They made that choice.

B1rdbra1n · 21/05/2020 17:00

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
I concur, when the chips are down you look after number one, to an extent it's a 'natural' progression, we need to find a way to manage this which is in the interests of all parties.
(I cant see one though)

ukgift2016 · 21/05/2020 16:36

Your father does not have to be as involved or be so adamant his mother remains living at home.

Your family have declined medication and declined respite. This is all your father choice. Let him live it. Your grandma sadly has no choice in her condition, your frustration should be aimed at your father.

NeverOnATuesday · 21/05/2020 16:13

Aargh.
I remember my formidable great-aunt telling me the police were coming for her - I told her that couldn't be true because she was plenty smart enough to outwit the police!

What happens if you just say the apparently the COVID quarantine regulations are different for fridges?

Got to love those rogue neurons...

Original poster
Noworrieshere · 21/05/2020 16:12

she would never wish this on her own children

That's the thing, isn't it? We wouldn't want our children to have to do it for us, my dad wouldn't want me to do this for him. My grandma doesn't realise how bad she is so doesn't realise how hard it is for us. If she did she wouldn't want us to do it. But she can't see it. Or if she can see it she won't acknowledge it. 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. There is no easy answer.

OP posts:
greenlynx · 21/05/2020 15:19

It’s so hard OP. I can’t offer you any practical advice, just wanted to tell that you are not a horrible person at all. You are good granddaughter and daughter. It does sound like your grandma should be in a care home, it’s too much for your parents to cope with.
My MIL was caring for her seriously ill mum for some time. It’s in 80s without any government support (not in UK) She’s always saying that it’s the worst situation in which you could be and she would never wish this on her own children.

Youcunnyfunt · 21/05/2020 14:43

Flowers that sounds so hard OP.

You are not terrible, you just want the best for everyone. I think you have to let your dad do what he wants to do though, otherwise it will make him unhappy. It's hard though, I get it.

Original poster
Noworrieshere · 21/05/2020 14:18

Her diagnosis is paranoid psychosis. The mental health team have been really supportive, she has been thoroughly investigated, we have no issue at all with the care she has received, lewy body was ruled out. Until lockdown she was having weekly visits from the community mental health nurse.

The only way she would go into care is if she was sectioned. Dad won't force it, she won't choose to go. We half thought that if she phoned the police often enough that would happen, but now they have a note on her file and just call my dad or me if she calls them.

It is what it is, we'll struggle on. I don't think my dad would be at peace with himself if he didn't do everything he could to keep her at home where she wants to be, that's the sort of person he is. I think I would make a different decision in his position but maybe I wouldn't, I don't know.

As for her quality of life, I don't know. She's safe in her little house, kitchen, lounge with big picture window overlooking communal garden, bedroom, walk in shower. If she knew she was behaving like this she would be mortified, but she doesn't know. And who knows, in these strange times and in her strange mind maybe having a long conversation with your kettle is as satisfying as a conversation with a human being. Maybe in her own way she is having a good life. She doesn't know how crazy her behaviour is.

It's just extra rubbish right now. We are all so far away. Even though it's only 40 miles. It might as well be a million. But this will pass. One way or the other.

Thanks for your support. It's good to know we're not the only ones finding life tough.

OP posts:
EvilPea · 21/05/2020 11:15

It sounds like she shouldn’t be at home on her own anymore and would be safer in a Care home. The gas one could have ended so differently.

Your poor parents (and you) Flowers it is utterly exhausting.

Social services are so stretched they will dump as much as they can on your parents. With my grandparents I spent many hours on the phone to social services and the doctor begging for more help for my parents. They were exhausted from caring and didn’t have the fight in them for social services as well.

Write a list of all the times she’s called people out, the gas board, the police and get on to her social worker. Keep on and on until you get the help she and your parents need.

katseyes7 · 21/05/2020 11:04

@MintyCedric lt's very interesting you mention Lewy Body Dementia.
My mother took her own life almost eight years ago.
Prior to that, she'd definitely not been herself, l got a GP out to see her after l found her still in her nightclothes at 1pm, which was not normal at all. (l had moved about 100 miles from where my mother lived a few months previously, and was visiting for the day)
The GP wasn't able to come out that day (the surgery said it wasn't an emergency, which is reasonable on the information l was able to give them), but one visited the next day, and called me to say she seemed "a bit depressed" but had refused medication and counselling. She took her life less than a week after.

However. What l didn't find out until after her death was that she'd told my cousin that there was water running down the walls, a 'red sparkly rat' on the fireplace, and other visual hallucinations.
Unfortunately my cousin had just said "No auntie, there's nothing there" and thought no more about it.
When l was clearing her house l actually found a note underneath an ornament listing all these 'visions' in her (albeit very shaky) handwriting.
Of course, when the doctor went to see her, we didn't know about that. She had refused to talk to me on the phone (she wasn't happy about me moving away) so l wasn't aware of any of this, and she never mentioned it when l went to see her.
When l found out and l was speaking to the coroner's officer after her death, l did mention it, and asked if Lewy Body Dementia was a possibility (l'd never heard of it until Robin Williams' death), but he said that the post mortem showed her brain was normal. She'd also had shaking hands (which is also a symptom) but that's not uncommon in elderly people - my mother was 83 - and had been very unsteady on her feet for quite a while. Again, symptoms of DLB.
l'm still not convinced that she didn't have it - a lot of the symptoms fit. l wonder if she thought she was going mad, and ended her life because of that. lf l'd known about it sooner l'd have raised it with the doctor. l also wonder if it's something that would show up on a 'normal' post mortem, as it didn't on hers.

B1rdbra1n · 21/05/2020 10:41

This is an impossible situation Opie and it's not your fault💐

helpfulperson · 20/05/2020 19:56

Medication for the elderly like this is quite a controversial topic. I was so glad my Dad had a Psychiatrist who was happy to prescribe quite hefty sedatives. Yes it made his sleepy and unresponsive at times but it also stopped him kicking lumps out of carers and getting so distressed every time anyone tried to do personal care. I firmly believe he had better qualify of life with it rather than without it.

Has she had a referall to a psychiatrist at all?

And I wouldn't worry about the 'horrible' thoughts - almost all of us who have been in similar situations have had similar thoughts.