Cockroach Cafe - Autumn

[rookiemere]

A new thread but the same themes, for those of us going through the ongoing challenges of supporting elderly DPs and relatives.
No judgement just support and virtual gins or tea on tap depending on your preferences.

@GnomeDePlume obviously not contagious but dementia can I think be found to be co-morbid at higher rates with other mental health conditions and DB’s behaviour sounds a bit like OCD? Or, he’s just being a dick. Hard to tell.

I agree with pps not to involve GCs. I’m slightly torn because in some ways I think it’s educative to see what the tail end of life really looks like, it’s certainly eye-opening, but of course that conflicts with a strong protective urge to not let DCs have to put up with any of that shit. I guess it would have been more normal in the “old days” with more intergenerational living. As you say they are likely to be a bit shocked and disillusioned out of their normal relationship with GPs. In our case DS has decided my DPs are not healthy people to be around and as such he chooses to have no contact with them. I can’t really argue with that and he’s an adult so it’s his decision, and I rather respect him for it actually.

@HeadinSandfolks we had letters from the OPG once the LPAs were registered too, I then needed these to start the process. My parents both started needing me to use them when Dad had a fall and ended up in a nursing home, Mum couldn't' cope with banking etc because Dad did it all. But both still had mental capacity (Dad can no longer do anything through physical impairments as he is bedbound, cannot hold a pen, use a touch screen or keyboard and his speech is going). Because they both still had capacity, the solicitors holding the originals needed a letter from each of them consenting to us using the LPAs, fortunately we did this while DF could just about hold a pen and make a scrawl as a signature. Then they released notarised copies to us for about £25 each. Registering online to use them took several steps but now I can use codes with most organisations

@MysterOfwomanY I really hope the Halifax are quick for you, I have found it very variable between different banks and organisations. Halifax is part of Lloyds now and one thing I have found (my parents are Lloyds) that any time you need to phone them about anything it is best to call the LPA team direct (you can't always do everything online). There is a specific phone no that goes straight through to them, but I haven't got it on me at the moment.

I think with DGC it depends very much on the people involved.
Would a visit do a blind bit of good for either of them? If so, in what circumstances? Does the DGC need to be "briefed" a bit beforehand? "Agree with stuff or just grunt, and lie about being called away if you think it's best you go,"?

When DH was 20 he had to deal with his (elderly) Dad having a nervous breakdown and hiding under the bed with a knife. Not perhaps what he wanted to do every day, but he coped. Though to be fair, DFiL was always very sweet even when he was in a different galaxy! Some 20 year olds can deal with this sort of thing quite well.
Others have their strengths, um, elsewhere.

@ElderlyDilemmas same, my ER is just unwell and frail and shaky - not away with the fairies yet.
I think that must have been the line the Halifax people called.
I had a mildly tiresome time dealing with Halifax when executing DM's will so I'm prepared for ankle biters.

DB still doesnt really accept that DM wont get better. He is unable to deal with change. He and DM have also both been very suspicious, assuming that 'people' will try to rip them off in some way.

I have recommended that DCs dont visit DM. She wouldnt know who they were and might be distressed. She did get distressed when I told her DGGCs had been born.

My DF is in a nursing home now, so a different scenario but I don’t encourage adult DS to visit as it’s thoroughly depressing to see DF as he is now and added to that, my DM is quite delusional about DF’s condition. One time I visited with DS last year my mother said to DS, “Doesn’t your Grampa look well?”. Afterwards DS said to me - “what was I supposed to say? Grampa looks terrible - like he’s already dead.” 😢

@Seeingadistance at least it means you can be frank with someone (!).
"You're not wrong love, just don't say it to DGM!..."
Though IME the actual dead look even deader.

Checking my texts, I have just been sent 5 copies of the photo of her front room which I took and sent her and one photo of one of her terribly ulcerated leg (which she emailed me before).
I'm just ... not even going to ask.

Involving the next generation is problematic isn’t it.
I grew up with my DGPs living with us and my DGM was still there when I left home at 21. I think now it must have put an incredible pressure on my parents marriage.
My MIL insists on a daily phone call to my DDs and they mostly go along with this, except when Uni work too much or similar. They love her very much, and don’t get involved in day to day crap and laugh at me when I get stressed so at the moment it’s working.

Having Granny or Grandad live with you was more common when I was young. An unwell elderly person with an oxygen tank (and cigarette in hand) was what I thought all over 70s were like as a child! There was no dementia in my extended family as they mostly died fast from smoking related conditions.
But DMs worsening dementia means I can't leave DC with her, even if DD is 20. Even a short visit can get tricky and DD can't cope when DM starts to cry or rant, its very hard. Thankfully (?) DM now ignores all smaller children.

Yes, my DD (20) had to witness me being screamed at by my mum that she might as well just kill herself when I was trying to escape from a loop of forgetfulness / anxiety hysteria over something minor that I had explained several times already and was desperate to get home. If I pull mum up on this (it has happened more than once) she can't remember she did it and just says, oh, sorry, apologise to DD for me. But it's shit for DD.

That's the kind of thing I'm worried about. My DM has been really quite insulting to me on a few occasions recently, as well as randomly bursting into inconsolable tears. I'm not enjoying that so I'm reticent to suggest my DCs should get bombarded with that as well.

When very minor ructions occurred while I was away, I started a new WA group with only the oldies - the 20-something kids are level headed enough, but don't really know ER at all . They have full time jobs and don't deserve to be dragged into all this.

I commend all of you trying to protect your own DC. My mum dealt with her mum, and DB and I visited infrequently. Looking back now, I think had I seen grandma’s decline in a bit more detail I might have been more prepared for mums. I stuck my head in the sand a bit, and maybe I could have seen the warning signs a lot earlier?

I suppose what I’m saying is, your (older, adult) DC need to know the ugly side of life/death too, because one day (but hopefully not for a long time) it will happen to you too and they need to be able to manage you. Being able to remember that a grandparent did the same daft thing as you will do will help them. It did with me when I remembered mum complaining about grandma not being able to use her radio when mum couldn’t change the channel on her tv.

Caveat - I don’t have children myself, I’m speaking as a daughter not a mum.

It's really difficult. DD1 has easier memories of FIL as she was mainly away at university in the five months he was living with us. DD2 was living here too as she was studying for her A levels and she saw how intransigent he was in refusing outside help and saw the pressure it put on DH. When FIL died DD2 was still partly cross with him and her grief has been more complicated than DD1's.
We've had family discussions about how DH and I don't want to put DDs through that. I've just ordered one of those death planning books so that I can write things down 🤔

@Mumbles12 - could you link to the "death planning book" please? It sounds potentially useful.

(Btw, Mumbles, as in Swansea Bay , was my teenage stomping ground - happy memories!)

My mother never got along with her mother and (just as I do with DM), lived several hours away from her. But I was close to my grandmother and lived an hour from her, so used to visit her far more frequently and as she aged, I'd see her at least monthly (full time work including weekends and a small child precluded more frequent trips). I could see she was getting more frail and her memory wasn't great. Then I upset her badly by involving my mother in something which she'd asked me to keep secret - but it was too big a secret, I didn't feel my mother should be kept in the dark. Gma rang me and furiously told me she never wanted to see me again. And that was that.

She died a bit over a year later, having gone downhill very quickly and become so paranoid and unpleasant that no carers or neighbours would go to her anymore. In retrospect I think maybe her argument with me was the product of this paranoia and I really wish I'd understood this at the time and tried to visit her again after a couple of weeks.

I'm not sure why I'm relating this except to say that I was the adult DGC in this scenario; I loved my grandmother, I really regret not seeing her in her last months, but I had no support whatsoever from any other family member to understand what was going on. I'm still sad when I think about it, but I can never tell DM as any mention of my grandmother just leads to bitter complaints about how nasty she was (although she was a lovely Gma to me).

I am very conscious of what it is teaching the DCs, definitely. I think we are getting a reasonable balance on the whole, the screaming episodes are awful but I am hopefully learning to de-escalate before we get to that now. I visit weekly, the DCs maybe once a month each (one works weekends, the other is at uni but back quite often). We lived hundreds of miles from both sets of grandparents so didn’t really see the decline or the every day grind (only 1/4 had dementia, one suffered cognitive issues following a stroke but I was in my 30s by then). When mum did the screaming thing I kept calm and said right, that’s it, I’m not going to be spoken to like that and took DD home (DMum does not have a dementia diagnosis, although she has been referred). So I am trying to model boundaries too. They have heard me swear after putting the phone down too but that is after what is obviously another doom-loop of a conversation which would have driven anyone to distraction. DMum has not helped herself by allowing DF to do all the family finances, admin and DIY/house repairs over the years so she is completely adrift without his help. OTOH DF drilled into me to never be dependent on a man for income, DIY skills whatever, maybe he despaired of Mum just letting him do everything all the time (he was a far more hands on parent than her too)

As DM is no longer herself I dont want this to be DCs' memory of her. They loved her and she loved them. Her pre-dementia self would have been thrilled to be a DGGM.

Now she can be very childlike. She can become very distressed suddenly. DCs know what is happening they dont need to see it as well.

I can understand protecting the DC

My nephew is absolutely amazing with DM. He’s the only one of the grandchildren who live locally ( @Eclipsing we are not a million miles from Swansea). He calls at least once a week, has taken over her greenhouse and mows her lawn for her).

My DC are pretty good with her though they are not unaware of the impact it has on me. I wouldn’t expect them to take on any responsibility for her and I’m quite emphatic that I don’t want them doing the same for me as I do for DM.

Unfortunately when my DF is asleep it’s really only the fact that he’s still breathing that distinguishes him from a corpse. Sometimes I find myself watching his chest to see if he is still alive. I have seen dead people and sadly my DF does bear a strong resemblance to them.

After typing the message above I realised that my DM has now outlived her ownmother (by a couple of months so far).

This prompted me to give her a ring. I go too long between calls but I'd rather that than have to put up with what some of you have to suffer! Anyway, she sounded remarkably chipper but is still minimising +++; she's had more falls again "but it's just when I turn, I lose my balance" (ie nothing more serious - as if that's harmless - she was keen to reassure me that she doesn't trip!). She also wanted to check details of her greatgrandchildren again, telling me that her memory is perfectly sharp for everything except their names and ages (yeah ok. I'm sure the fact that she never sees any of them doesn't help to be fair). But I just make polite noises. There really is no point in challenging her.

@BestIsWest - I'm a long way from Swansea now!

I'm increasingly thinking that my unrealistic sibling is actually more to blame for the problems with DM than her dementia.

I'm not sure whether it's her dementia or just a natural selfishness that the dementia prevents her from hiding, but DM often complains that she expected friends and extended family to do more for her. She will refer back to things she did to help them many years ago (including babysitting them when they were small!) as if that means they owe her. When she complains to me I remind her that they are elderly/unwell themselves or live a long way away/have jobs/have children to look after etc but that they do visit and call her and isn't that nice, aren't we looking forward to seeing them again, what cake shall we have when they come etc etc
She calls me most days with a list of things she wants to complain about/ask me to do and Brother is often grumbling away in the background. Today she was basically saying that all the people she had helped over the years, or their children/grandchildren should be looking after her. As I tried to calm her/distract her I could hear Brother in the background agreeing with her and then ranting about 'all these people who said you could call them if you needed help but they don't want to actually commit to really helping do they'. He's complained about this before and it's clear that when people have done the polite 'if there's anything I can do to help...' thing he's interpreted that as meaning they should be willing to be part of a 24/7 caring team. I'm sure most of them would help out on occasion with things like a bit of shopping but he can't seem to accept that committing to sharing the responsibility for caring for a dementia sufferer is a huge ask.
It sounds like since I have stepped back from doing more and more, he has been putting pressure on other family and friends. I think without Brother's involvement DM would (reluctantly at first) agree to putting together a proper plan of paid care- either visiting carers/day centres/cleaners etc or residential care. But as it is, they are both stuck in a loop of arguing about what family and friends should be doing and why they aren't.

I want to start a campaign aimed at elderly ladies who repeatedly fall over (and middle-aged male doctors who minimise it).

Falling over when you are older is not normal and you need to find out why and do what you can to prevent it!

Argh!

I don't think her doctor minimises the falls; DM minimises them by not reporting them, and downplaying the frequency and severity.

She has (of course) refused point blank to have a falls alarm,saying that my brother will pick her up if she can't get up on her own. No recognition of the fact that he's not always in, or that his trying to lift her after a fall might actually cause further injury.

HOWEVER - she was very lucid today and spoke about some exercises she was previously given by the physio to try to help, and how she planned to start doing them again!!!

(This was the Otago exercise programme. If she can truly remember how to do any of the exercises and actually carry them out, then I have to give her full credit and me a black mark for being such a doubter).

I saw DM yesterday. A bit mixed. I didn't do very well when confronted with yet another problem.

She looked at me with surprise when she opened the door "you're early!" Nope, I was exactly within the 30 min arrival time I had agreed with her. She was still eating breakfast and wanted to know why I had come over. Erm, shopping because your support worker is away?

It look 1 hour 20 minutes to finish breakfast, write a very short shopping list, decide what coat to wear, whether to take walker or stick, put shoes on, find money, keys, phone, check she had all these at least 3 times, and get out of the front door. I did manage to alter some clocks during the faff-fest.

We did have a successful shopping trip (not just the supermarket for once) but when we got back I realised she hadn't had a prescription picked up. I went back into town for it only to find it still wasn't available, even after 10 days. It's the third time this medication has been out of stock, previous shortages have necessitated friends and support worker chasing all round GP and other pharmacies in other towns to source it. Then DM says she only has 4 more days of this medicine left. And is now panicking about how she will get more.

I told her I can't come back this week because I am busy, you live too far away for me to be back and forth to sort this. We agreed she should call the GP to see if their in-house pharmacist can source it (she is very helpful) or if another version of the medication can be prescribed instead. I can't call as I don't have permission set up to contact GP on her behalf which I will probably need at some point.

I did also say I really wasn't coping with trying to tackle all her problems from an hour away and it was starting to massively impact my home, social and work life. I have persuaded her to think about more support worker help. She of course would prefer to rely on neighbours and friends but many are unwell. She could see I was upset and frustrated and ofc got upset herself. Maybe me having a bit of a mini meltdown is the only way she will understand she is burning me out completely. I sort of feel a bit unkind but justified at the same time. I know she's ill but I have run out of mental road with the situation.

@bigdogpaws I am sorry your DB is being so obstructive and can't see that the calls and visits from your relatives are actually really helpful. They sound decent people.
I don't expect anyone else to help with my mum (well I wouldn't say no to someone entertaining her at Christmas as it always falls to me) but more visits and phone calls would be lovely for her. Only my aunt and uncle phone and visit regularly (for which I appreciate them more than I can say) and she generally only sees other family if I chauffeur DM to them. Most can drive but just can't be arsed to come over.

@bigdogpawscould either (or both) of them be ND? I’ve seen very similar in some family members who take very literally someone’s offer to “let me know if you need some help”. The person invariably means it in a vague sense maybe putting the bins out when they’re on holiday or picking up a pint of milk. The relative then gets upset about why this person isn’t wanting to drive them to every medical appointment!