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?

You are not an awful person no. You are someone who cares deeply and you sound at your wits' end, understandably in this situation AND in the middle of a global pandemic. Your are frustrated with not being able to physically do anything to help everyone involved.

Is there a dementia charity helpline you can call even if it's just to chat/offload?

I feel so so much for you and I completely understand what you’re saying

It’s not a life and it ruins the lives of those involved. You’re not a horrible person.

It must be worth trying some medication? When you say it knocked her out, you mean she’d sleep a lot?

I'm in a very similar position. It's desperate not having any social contact or day care for them. Is she not getting any paid care?. She needs a social worker assessment and carers visiting. It's possible to get this done even now.
I haven't found dementia helplines that helpful at the moment. There's really nothing they can offer or suggest, it's a disaster. Sorry!

It must be worth trying some medication? When you say it knocked her out, you mean she’d sleep a lot?

She couldn't stand up, couldn't put her words together, slurring her speech, couldn't close her mouth and chew properly, falling over. She was like a zombie. The mental health team (she is under them because it's a mental health issue rather than a dementia issue even though it is age related) have been so good, she has been on several drugs but just can't tolerate them, she's so small and frail. The last one she got she had to take 1ml and couldn't even manage on that. So we decided we would rather she was ranting at household appliances than all doped up. Had we known at her last review what was coming maybe we would have made a different decision. MH Services have offered respite but again we decided to save it till we really need it and now is not the time to be putting anyone in a care home. My dad just refuses to even consider it and that's fair enough.

Thanks for being nice to me, I appreciate the support.

YANBU at all...it sounds like an incredibly difficult situation and if it didn't effect you in some way you wouldn't be human.

I'm constantly fighting a battle between guilt and resentment atm. I left an unhappy, controlling marriage four years ago and imagined that by now, with my only child nearly grownup I'd have a lovely new life.

I had 8 months in my own home before my dad had a catastrophic fall and he's been going slowly downhill since. We were told just a few days into lockdown that he only has months left.

I'm an only child, no partner, mum is struggling to cope now and will probably be even worse when dad eventually passes.

Sometimes I just want to scream 'FFS when will I get a chance to live my life'...and then I feel guilty and depressed and vow to do better until it all gets too much and resentment kicks in again and round and round it goes.

I agree that chatting to someone is a good idea and maybe trying to get some support in place so that when things start improving on Covid related front, you might be able to get your dad to reconsider a residential home (totally understand why you wouldn't now) - it really does sound as if your man needs more care than your parents can healthily give her.

She does have carers morning and night but everyone is so under pressure right now, they don't have time to sit and chat. And the weird thing is that she can act all normal in front of her. I don't think they would have a clue that last night when I spoke to her she was telling me her fridge is going away on holiday, it's getting picked up in a taxi tomorrow morning. It's got a special flight with special medical people so it won't get sick. But grandma is worried it might get quarantined when it tries to come back. That's also weird, she can follow the news and everything, but thinks her fridge is going to Lanzarote on holiday.

Your parents need to make different choices, difficult as it is. They are not obliged to do any caring. A crisis would likely soon ensure social services intervene, even during Covid. My DM ran ragged after my GM and ended up on BP medication and antidepressants. Only when she said no more did GM go into a care home. My GM later died and then ironically my DM was killed six months later in an accident, only in her Sixties. So unfair.
I have been nursing thirty years and agree, too many people live far too long. I would get off this merry go round long term without guilt. If others choose not to, their lives will pan out as a result of their choices.

It's really tough when the care/support they need is ad hoc and not easily provided by carers.

Has your nan been assessed for Lewy Body Dementia? It often causes hallucinations and is frequently misdiagnosed.

My aunt was diagnosed a couple of years ago. She was convinced people were coming in her windows (second floor flat) and hiding in her wardrobe. She was also very lucid at some stages. At one point she carried on a completely normal conversation with my mum for the best part of an house, then told she was planning to buy a new bed. When mum asked why as the one she had was lovely and not in need of replacing, she told her it was because the people who came in through the windows were sleeping in it when she wasn't looking.

You are not in any way a terrible person. I wish your grandmother would peacefully pass away right this very minute for everyone's sake, including hers. The poor thing has no quality of life, and your family is suffering terribly. When my mum's dad became very ill very suddenly, I hoped with every fibre of my being that he would die as soon as possible, and thankfully he did two days after I last saw him. He would never have wanted to languish in such a terrible state.

It's not awful to think that way.... honestly, when my very much loved grandfather became frail in his early 90s, even without dementia, I found myself hoping he didn't have to live too long that way - it seemed so joyless, unable to travel, which he loved, unable to be sure of doing anything because some days he wouldn't be up to leaving the house... I'm on a level relieved he developed a cancer that, with relatively little suffering, took him away at the beginning of last year. I am certainly very glad he didn't have to live through this.

OP

Are you saying she acts normally in front of the carers? Because that would mean something else is at play.

This may seem weird but I think dad’s cancer affected his brain. He would say things that were not socially acceptable and when we told him not to, he understood and didn’t repeat it.

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.

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

@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.

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) 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.

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.

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.

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.

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.

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...

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.

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)

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.

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?!

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.