Cockroach cafe - summer

[GnomeDePlume]

A new thread.

This is a place where anyone dealing with elderly parents/relatives/friends can rant, vent, scream into the void.

There is no judgement just understanding, support and good advice.

I never got on with my mum. Even as A child I knew I didn't make the cut of what a girl should be like. But the weird thing is she's actually nicer now she has dementia. It's almost like she's forgotten I wasn't the tomboy she hated and DB1 was the sone who could do no wrong. Now she complains about him and is nice to me. And after 60 plus years of the opposite years I'm finding it quite disconcerting and hard to adjust.

I suppose having time to reflect is a luxury that I didn’t have when both DPs were at home.

Like your DM @countrygirl99DF has completely changed and is this happy, grateful version of himself that is very different from the version I have known all my life. Inversely DM has changed the other way and is cantankerous and demanding most of the time.

I have always felt - particularly for DF - that I have never been quite good enough. Not quite clever enough to get into Oxford like my best friend, not as attractive as my cousin his favourite and just marginally short of success in innumerable ways. And now I am all they’ve got, except for DH who has been marvellous.

I feel petty and childish even thinking about this stuff in their final days/months/years or whatever it may be, but it keeps bubbling up.

I've never really got on with my mum, I suspect if it wasn't for my Dad we would have drifted apart in my adulthood (I couldn't get away from Mum fast enough at 18 and never went back). And now I am very happily doing everything I can for Dad (nursing home, no dementia but more or less bedbound, very frail, not much speech) and spending time chatting to him, making him cakes etc, sorting out his money etc. Whereas Mum (at home, no carers, physically fit as a fiddle) is just getting worse and worse, the anxiety that blighted my childhood is now combined with forgetfulness and she never did do any admin stuff but let Dad do it all and is driving me absolutely round the bend with anxious texts and calls usually about trivial matters and everything I do is wrong. I worry that if Dad goes first (likely) there just won't be the motive to go over to their town any more, just dread.

Can I thank those of you who suggested Ann Droid? It’s hilarious. So keenly observed.
And flowers for those reflecting on a lifetime of disappointing relationships with parents!

I bet there’s a cocktail for that. Bitter Disappointment, served with salted tears, perhaps.

“All they’ve got” hits a nerve, @rookiemere

I was never good enough. My DM spent her time and attention elsewhere, couldn’t be bothered with me, nor eventually her grandson. Now I do loads for them and I think she’s surprised to find she has a daughter (she also did very little for her DM, leaving it to her sister instead). She does say thank you from time to time but it’s almost like she’s happened upon a stranger who has agreed to help her. It feels very odd.

I can really relate. I feel like my mother is a stranger and I feel a stranger to her .Her focus was always elsewhere. Yet she's very upset that I'm not a loving daughter who adores her.

Finally got the call today to say mil will need full nursing care, not just residential and that they’ve applied under CHc but if unsuccessful will bounce back to social services to place her. Sounds awful but the relief that she isn’t coming home is immense

Handhold for you @EagerQuail

i recognise the sense of mixed relief and guilt

@FinallyHere thank you, there’s some things you can only say here!

@EagerQuail indeed - such a strange feeling, I hope placement is sorted okay 🤞

@EagerQuail I so recognise that relief. Finally having other people see what you can see.

Dealing with elderly relatives can throw some difficult emotions into the ring.

The 'I couldnt shove my lovely mum in a home' brigade dont get it.

Unless you can clone yourself, caring for an increasingly frail person to a decent level of comfort requires a team plus space plus equipment.

And what if your DM wasnt 'lovely', what if your relationship wasnt close, what if the only reason you are stuck with dealing with any part of this is because related to this person?

I'm already only visiting once a week (cut down from 3x per week when DM was in hospital).

Keeping to this level means that I have been able to mantain a relationship with the CH care team. I feel they are more honest with me than DB.

DB will be told that 'everything is fine, DM is cheerful/chatty, ate all her breakfast/lunch', CH platitudes.

I will be told the same but then at some point a member of the care team will seek me out and give me a rather less upbeat assessment. DM was grumpy/sleepy, only ate a couple of spoonfulls of food.

DB laps up the platitudes. This is what he wants to hear. He doesnt realise that these are just given to everyone and dont mean anything. Listening to the CH team talking to other visitors I notice that female visitors tend to get more of the realistic messaging.

Interesting observations.
I wonder when the balancing act gets to stop. Does it ever stop? Feels like life is a sequence of juggling and balancing needs and wants and expectations.

This juggling act is only going to get worse with aging adult children left trying to help their increasingly frail, cognitively declining, parents.

For a while we had the Liverpool Pathway. There were a lot of concerns about how it was being used so, rather than sorting the problems it was stopped.

Now we have 'individualised end of life care plans' which push all the responsibility onto family and low paid care teams. Nobody wants to be the one to say 'enough's enough'. So treatments keep being prescribed, increasing levels of intervention are needed. All to keep the body alive long after the person has gone.

I will have to see if I still have my late Mum's health LPA.
She wrote something on the lines of, if she was too "gone" with dementia to recognise her family, and she got sick, just to try to keep her comfortable and let her go.
She had cared for a lot of elderly relatives - in particular, her mother, dying from cancer, and in the 70s she was just left to get on with it, no carers or even district nurse help.
I suppose I should check my own LPA and see who the backup is if DH can't act, and have a chat. Him, I can trust to do "best interests" discussions and decisions. Anyone else less close should, I think, be briefed.

The 'I couldnt shove my lovely mum in a home' brigade dont get it.
Unless you can clone yourself, caring for an increasingly frail person to a decent level of comfort requires a team plus space plus equipment.

And that brigade's "lovely mum" may become intransigent and unsafe as they age. They might get it then. It's perhaps like people who first have an easy baby who sleeps well and then go on to have a cross non-sleeper. They can be unbearable in the advice they dish out based on first baby only...

Or the lovely mum has hallucinations that dominate the entire household and the DC can't have friends round for fear she'll attack them.
Or she pushes a family member down the stairs because she doesn't recognise them and is frightened by their presence.
Or she can't be left alone, even for 5 minutes elsewhere within the house, for fear she'll cause serious damage like a fire.
All those gave happened to people I know.

Hello everyone, just checking in. I’m back at work because nothing is happening while the wheels of death bureaucracy grind exceedingly slowly. The care home manager called me today to see how I was and if there was anything they could do for me, and asked to be kept informed of any funeral plans.

I’m meeting some friends tomorrow, the meet up has been in the diary for weeks and DH was surprised I’m going as he wouldn’t have felt up to it a week after his mum died. But the thing is, I’m not grieving like I did when dad died 12 hours after sitting in the hospital bed with a cup of tea issuing instructions to me. I’ve not been able to have a proper, two-way conversation with mum for over three years at least. I’ve been missing her for a long time and have already come to terms with her absence.

Also, thankfully, I don’t appear to have been traumatised by being with mum when she died. No dreams or flashbacks or intrusive thoughts.

I’m not heartless completely normal, I do feel slightly off-centre and distracted. But I used to say I felt like I was pre-grieving as mum’s cognition deteriorated, and it turns out I was right.

I recognise the pre-grieving, going through the grief cycle with anger and tears. I did it a lot with my Dad who had a terminal diagnosis. I am also experiencing it with Mum as she slowly declines with dementia.

I think it does help to sort of spread the emotions over a long period of time so you aren’t a shell shocked when the inevitable happens.

I think you do what feels right for you, working keeps you busy, friends help by either letting you reminisce or taking your mind off it.

My mother is in the early stages of dementia I think. It's really horrible. I feel the grief of losing her already . Even though I've never got on with her it feels deeply distressing.

It feels with dementia that you are getting death in reverse. You lose the shared memories and experiences before you lose the physical person.

And if you werent close you dont necessarily have the feeling of giving support out of a strong love for the person you knew. You may find you are giving that support because you have to because as @rookiemere said, they havent anyone else. A sense of obligation/duty following on from a lifetime of doing things because you felt you had to rather than wanting to

I am glad you’re managing ok @funnelfan.

I do think generally as a society we seem disconnected to death. I remember when my DGF died he was 99 and in poor health. At the funeral I was catching up with distant cousins before the service and realised the vicar was giving me dirty looks for being too jolly I guess. I mean he was 99, what exactly were they expecting, yet there was much sad chat that he hadn’t made it to 100. This was a man who had been stuck in his armchair telling everyone he wished he was dead for 6 years after a car accident that destroyed his mobility.