Cockroach Cafe - Autumn

I feel like a shit daughter, but I don't know what to do? Can I speak to her GP? Is that a thing?“

Yes talk to your Mums GP, they can’t tell you anything but can do tests and a referral to the memory clinic if it’s appropriate,

Just catching up after two weeks away.

@rookiemere I don’t know if it helps but my Dad was depressed towards the end of his life, he had cancer, and I asked about anti-Ds and the response was it too late to make a difference. My Mum has dementia and was very anxious and is on a low dose of sertraline which has made a difference. However it takes a few weeks to take effect.

@bigdogpaws 💐 I could write an essay as I had a similar situation with my sibling having my Mum move into an Annex then realising she was facing a decade of increased caring. I tried to point out before the move happened that they hadn’t thought it through, but I was the bad guy.

However, when it went wrong it was my job to sort it out. When I mentioned returning some of the money Mum invested in the annex I was the devil incarnate and the resulting shit show is not one I would wish on anyone. I was barred from visiting my Mum in her home it was a dreadful time and severely impacted my mental health.

Thankfully my Mum is now in a home and no one can stop me visiting her. The financial disagreement is ongoing as my Mum may need the money for her care.

The points you make about joint LPA etc. are spot on, it’s not about treating DC fairly it’s about who will do what is best for the parent. Who has the time and skills to manage the finances etc.

Does the bad daughter bench come with pillows to scream into?
AAAAAAAAAARRRRRGH!

I'm back to worrying about my mum, she's loosing her ability to navigate well known places.
She's lived near a small shopping centre for 40+ years, since I was a baby.
We went there today, she needed to go to the post office to pay her bills, I left her to grab a trolley and sent her off to the post office.
Somewhere she took a wrong turn and I thought I'd lost her, she did turn up eventually (not without me wondering if they still put calls out for lost children?)

The shopping centre hasn't been deeply refurbished for 10years ( shops come and go, but the escalators don't move) Tesco adopted the post office years and years ago.

She also seems to be loosing the concept of time, she called me at 7.15 wondering when I was coming to see her. We had arranged 9ish after I'd dropped off DH somewhere.

I feel like a shit daughter, but I don't know what to do? Can I speak to her GP? Is that a thing?

To be honest her sense of direction has always been shite. My dad trained me to read road maps to avoid divorce when I was about 7.

Same for my mil . We have noticed a sharp decline in her cognitive ability ( she is 90 ) and lives alone .
She has recently had two spells in hospital after having hallucinatory episodes and found to have raging infections .
Whilst in hospital has threatened to kill herself if not allowed home .
After 7/10 days due for release and agrees to a care package for a month .
However once home , has on both occasions refused that care and not allowing carers .
Deemed as having cognitive ability , so carers are cancelled as per her wishes .
Rinse and repeat.

This is pretty much how things began with Brother. He lives a few mins from Mum and always liked to use her place as a bolt hole when he wanted some time of parenting/adulting so at first he was only too happy to stay over with her once a week. Meanwhile I did all her shopping, medical appointments, household admin, cleaning etc. When she first started to have crises Brother was always first to go round and make her a cup of tea but would leave 'for a rest' as soon as I arrived to try to sort out whatever she was worried about. It's only since I've said I can't do any more and we need paid care for Mum that he has started to do anything that's really inconvenient to him. He wanted me to take over doing everything once this became difficult for him, but as I keep reiterating that I can't and we need a proper care plan he has doubled down and things have turned quite nasty.

Actually the demanding relative does even need to be a martyr. My brother just demanded while he was doing stuff it wasn't anything that required him shifting from his sofa but I was expected to clean, garden, do all appointments medical and otherwise, visit twice a day 365 days a year (I'm an hour away) etc.

Social workers will have seen it all before. The martyring relative making unreasonable/impossible demands of others is a frequent occurrence.

You're right. But Brother's view is that there is no need for anyone to plan. My options, as he sees it, are

1. We all pitch in together to care for Mum for the rest of her life. This will 'just' require the 2 of us to each stay with her half of the year (either in blocks or a few days a week each) and everything will be OK. Some helpful friends and family will be sure to want to help too. This is clearly the best thing. We'll be able to keep working etc and any tricky care needs can be sorted out between us when they arrive- Mum's almost certain to have that special sort of dementia that doesn't lead to incontinence/serious mobility issues/feeding problems/personality changes/not recognising family etc; or
2. Be a selfish cow and leave him to do everything, even though I no longer have small children and am self employed so obviously am in a far better position to stay with Mum than he is. This shows I don't care about Mum and want him and his family to suffer so that I can be lazy. If I do this I can only see or speak to Mum when he decides I should (but the official line will be that I never bother contacting her). No planning needed- he will just have to do everything so I have no right to even ask what's happening.

That sounds awful for all concerned. My brother reacts in a similar way (although he has always had a tendency to expect to be able to dictate what happens and expect everyone around to kill themselves to facilitate it- he did the same with demanding that family provide him with childcare). I agree that it's pointless trying to reason with someone so entrenched. In your situation I think involving a social worker or similar sooner rather than later would be sensible- perhaps they would be able to make your SIL see that her well intentioned efforts are no longer the best thing for your MIL.

@glasswings - exactly - an outsider in a position of authority won't have qualms about saying whatever's necessary.

@bigdogpaws - sympathies, that sounds so stressful, how can you plan when you're not given the tools to do so?!

I'm increasingly realising that the actual issues causing me stress, worry and exhaustion are not really Mum's dementia and care needs but Brother's attitude towards this and the insistence from HCP/wider family etc that she has capacity and so no one should try to interfere with her decisions, however unwise.

As I've mentioned/ranted about on here before, Brother insists she should be cared for by family/friends only and of course she agrees. She already needs more help than I think is feasible without some sort of paid help (particularly because she is scared to be left alone at night ever). So she is currently not receiving the care she really needs and not in suitable accommodation. Their view is that she has the right to make this decision and any shortfall in her care is because other people won't do more. I have been trying to encourage her to assign LPA for a long time now, but Brother's not thought it necessary so it's not been done. He has now decided it must be done and must be him. But has clearly done no research to know what's involved (he wanted me to tell him what to do and get him the forms, as he is too busy for all that). I've tried to point out that if he is too busy to fill in the forms he won't manage to do the job properly, but what do I know? The fact that so far every vaguely admin task he has taken on for Mum has been done badly or left so long that someone else has to do it is apparently irrelevant.
It's very obvious that sooner or later there will either be a big crisis or a series of small crises that become too much for Brother and I will be expected to sort everything out. Which will probably mean having to find care at short notice, with depleted savings and potentially selling a house that's been deteriorating for years. All without actually having LPA as Brother will have it and by then DM will not have capacity to change it. (I know joint LPA is possible, but for lots of reasons I won't/can't do that).

I know that looking for and managing proper care is not easy, but if I could deal with it in a sensible way now it would be so much less stressful for me and better for Mum too.

@Eclipsingthe social worker or a gp might have the conversation. Trust has broken down and I think sil just thinks her siblings are not pulling their weight and if they did they’d all middle through- I think any communication from her siblings is met with suspicion that they are saying these things because they just don’t want to provide the same level of care sil expects them to. It’s so hard to communicate with her as she explodes and it’s not that dh is fearful of the explosion- it’s just that it never helps, she never shifts her position, she throws around accusations and harsh words and then retreats and the pattern keeps getting repeated - there is no compromise.

@glasswings , it depends on your family relationships and how brave you're feeling, but I'd be v tempted to tell SIL that if other care arrangements aren't arranged asap (today?!) then you'll be calling the duty SW on the CoE team.

You've got an elderly woman in considerable pain whose care has slipped to the point where basic toileting needs can no longer be met.

What's SIL going to do as long if all hold firm? physically drag your MIL, whimpering with pain, to the commode? Leave her in her own mess? Both of those are safeguarding issues.

God, I sound like a cold, bossy cow and I know it's much easier for an outsider to say these things! But someone with non-familial authority needs to lay down the law, for the sake of the vulnerable older person in the middle of this.

What about an emergency visit from the GP, so they can have some professional input? will the surgery do that?

Full sympathies @Headstandwe are at a similar place but we don’t have all opinions aligned.
As of yesterday Mil can no longer move - she’s in a lot of pain, it takes two people to carry her to the commode. Mil does not want to move to a home - sil is still facilitating this and is demanding that the other siblings help with the overnight stay - still will not insist with mil that she must now move to a home. It’s all happening quite quickly but sil still insists it might be temporary. Sil is breaking but she still won’t give in to telling her mum what this is costing those around her - especially herself. She’s blaming her siblings for not helping. Dh is calling around care homes this morning as the situation is likely to reach crisis very soon. As @GnomeDePlume mentioned earlier moving her manually when she is unable to move herself and while she is in pain is not safe, with two people it might be easier but that’s just not going to be practically possible. What a mess.😩

Sadly I think you're right!

I found this summary (on the Mind website) which I think summarises it usefully:

Before someone can make a decision for you, they need to have a reasonable belief that you no longer have the capacity to make that decision yourself. This means asking questions like:

• Do you have a general understanding of what decisions need to be made?
• Do you have a general understanding of the consequences of the decision?
• Do you show this general understanding in the way you behave and make decisions?

It's the last hurdle that I think is the most difficult to clear. We are all allowed to make bad decisions; but in this case, does your ER show a "Clear understanding" of the consequences of her decision to refuse the hospital bed? I'd argue that "don't want it!" (shades of toddlerhood!) isn't showing any understanding of the situation and depending on circumstance, "don't need it!" might not either.

IME presence or lack of capacity is recognised by HCPs depending on what is convenient to them.

Unfortunately we found that the inability to retain medical information or remember decisions wasn't considered a lack of capacity as she was deemed to understand at the moment she made the decision.

Thank you, that's really helpful. It almost feels like she is gaslighting us, and insisting we must have misunderstood or misremembered but we were all there! I think her capacity is limited, personally, but she hasn't had a full, formal capacity assessment but if she continues to refuse I think we will try and insist.

Luckily everyone involved has agreed none of us will help her self-discharge. She will have to agree to the help in order to go home. She's so stubborn though, I don't know how long she can hold out for.

Don't move her, @headstand! That hospital bed is precious!

Do you think she remembers agreeing and is now being contrary? In which case you may have to tell her that you won't take her home unless she agrees to it. Or do you think she's forgotten agreeing? If that's the case, make the argument (to the staff) that she can't retain info and is unaware of the consequences of her decision, ergo her capacity is impaired and therefore her refusal can be overridden; you will be acting in the best interests of a frail and vulnerable elderly person in so doing. (Obviously you know that but you may need to spell it out to the staff. Sometimes they can be over keen on allowing autonomy where it really isn't appropriate).

Good luck!

Having an absolutely maddeningly time with MIL once again. She's incredibly frail and needs significant care, bed bound, largely immobile. Landed back in hospital and she finally agreed she needed some professional care and that a hospital bed could be put in to help with that. Great, all on board, getting that sorted for safe discharge. This morning she says she "never agreed" to that and "doesn't want it". Gah!

Now what. She can't get home under her own steam, but we can't leave her in hospital indefinitely. Feels like a stalemate.

My DM didn’t much support her DM, she left that to my DAunt, the only single daughter out of 4 siblings. Nan died at 72 when DM was 46. Grandfather died a decade previously.
DM is now 90 and still going, DF is 98, I am 54 and can’t see the end….

I absolutely agree with all of the above.

And adding to the changes is that many of us had our children later meaning that, in my case, I've still got children (young teens) at home as well as work and trying to support my DM.

My DM had her children in her twenties so we were all long gone by the time my Grandma was elderly. Not that DM helped her Mum particularly but that's another story!

Yes, I know what you mean, I had this exact conversation with DH this morning. DFIL lives on his own at nearly 90, drives (competently), shops, cooks and has three relatives nearby that between them visit most days and lend a hand with housework etc and are happy to do so because he is good company, undemanding and never moans, puts the kettle on as soon as you arrive etc. Whereas I am starting to dread visiting my mum and only go when I absolutely have to, I spend my childhood tiptoeing around trying not to set her off fussing and worrying and left at 18 never to go back and now I don't want to go in case she screams, cries and threatens to kill herself when I attempt to leave, as for getting a cup of tea and chat out of her, no chance.

I know a 96 year old woman who has become frailer in the last couple of years but is still managing in her own home. She hands the washing out, cooks, does housework, makes jars of (delicious!) lemon curd for the neighbours!

Her husband (who was younger) had a relatively short but quite aggressive illness with dementia before dying about 5 years ago.

The thing is, she (and her husband) have family who help out enormously. One of her adult sons lives with her, but goes to work so she's on her own all day. When he goes on holiday, other family members take it in turns to cover. There are frequent family get-togethers at her house at weekends., when she cooks the lunch!

Now clearly she is lucky to keep her health, marbles and independence this long. But she's also lucky to have such a caring family. Or is she? Is that luck? Or was she a kind and caring mum and granny, even tempered, generally cheerful, the sort of person who people want to spend time with?

Basically if my mum was a more pleasant person and less stubborn, we would probably be less inclined to withdraw. If I had happy memories of childhood instead of panic attacks at the thought of visiting my childhood home, I'd visit more often.

I'm not sure I'm expressing myself v well here but maybe you know what I mean?

DM retired at 60, her parents had died some years earlier but as they had moved 100s of miles away their siblings had done the bulk of the care, DB and I were in our 30s and fully independent so she and Dad had a lovely first 15 years or so of retirement travelling the world, socialising, a bit of grandchild care, volunteering. not a care in the world. Whereas I'm nearly 60 and working part time 4 days plus I'm a school governor and will be doing so for a good few years yet, my DCs are ND and at home/uni not fully independent. And then Mum seems to think I should be able to just jump to it whenever she needs something. She weeps and wails about how awful things are for her all the time with Dad in a home now but she is living in a lovely house that she can manage with a lovely big final salary pension, us to help, friends, her life really isn't that bad and it DOES MY HEAD IN. DFIL has suffered far worse (lost his beloved wife traumatically and has had to have several major surgeries in the last 3 years) and I have never once heard him complain about his lot in life.