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.

Well I will be doing the long drive to the childhood hometown this weekend. My OH is coming, we're staying in a budget hotel in a slightly scabby part of town as nicer options cost a fortune.

Speaking to my mother it seems clear that we're expected to take my brother out for lunch with her, and I don't want to (for a lot of different reasons) but can't really say no!

She also said that she had planned to write to me to warn me of a few things; it's already been agreed that I won't be going into the house (her refusal to acknowledge the squalor having caused considerable distress and some huge rows previously) but also she says she is now very skinny and has lost a lot of hair so doesn't feel she looks like herself, plus she's v ashamed of her garden as the previous gardener went AWOL and she hasn't got a good replacement.

I have suddenly realised this morning that my "approval" seems to mean a lot to her, and I'm struggling with this idea. How long has she felt like this? And why? Given that I've needed plenty of external help over the years to overcome the fact that my childhood was blighted by seeking and usually failing to get her approval - why the volte face?

@Eclipsing Sounds like that will be a tough weekend. Hopefully you and your OH can factor in something nice for the evening so it's not all stressful.

Apologies if you've already covered this, but do you think anyone in your family could persuade your DM to have a 'general check up' (ref cognitive ability) with her GP? Lots of things you've said remind me of things my Mum (with dementia) does. I've managed to keep Mum's living room looking tidy but every other room in her house is messy and dirty (not something she would previously have allowed). I think part of it is definitely that she just can't see it properly, but she is also hoarding 'stuff'. She's now also started complaining about her appearance and that people will think she's 'funny' or say nasty things about/to her etc. I think partly it's an excuse to avoid going anywhere (she told a HCP the other week that she couldn't go to a day care centre because she has nothing to wear and everyone will laugh because her hair is grey and she's gone skinny) but also a symptom of the dementia that she imagines scenarios where even people she knows well are being unpleasant to her. I've suggested taking her to the hairdressers/buying new clothes etc and she absolutely refuses so I don't think it's that she logically and genuinely is unhappy with her hair/clothes etc. I know you've also mentioned before about your DM not being able to use the phone but not being interested in finding better options. My DM also has very poor vision but actually it's her cognitive decline that prevents her from being able to manage the phone. She and my brother blame any issues on her vision but actually she just can't manage even the simplest phone other than to call a few speed dial numbers.

I recognise that the family dynamics may be such that you don't feel able to broach this even if you think it could be worth looking in to

@bigdogpaws , I'm sure you're right, but stuff like this has been mentioned and received a flat refusal.

If she does get to see a GP or HCP (which she can't always avoid) she blithely tells them that everything's fine, and she doesn't need any help as her adult son lives with her. The latter is factually true - but his ND means that he can't see what needs doing, can't initiate action, has no social contacts to enable him to understand "normality" -- she cares for him as much as vice versa

He's learned how to do the dishwasher as she couldn't operate the new one. He can't use the washing machine, use a tin opener, change a lightbulb. He doesn't seem to see the dirt, the faeces, the rodents, the mould any better than she does.

I've alerted the GP surgery to the situation but my brother is registered with a different surgery so facts aren't joined up! And yes, I've said he should change GPs but what do I know? Ha!

I agree, I don't think she's able now to learn how to set up Alexa etc, even with help (I tried). But if she'd accepted the idea of a large button phone +/- speed dial a little while ago, she'd know how to use it by now! And it worries me that she could come to grief whilst my brother is out (he goes out regularly to walk the dogs - yes, there are two small trip hazards/infection risks aka terriers to add to the fun).

The last couple of years have brought some significant falls and a major heart attack so it would be sensible if she had the means to call for help independently. But (to continue the theme) what do I know? Ha!

@Eclipsing That must be so frustrating for you and sounds like there's nothing more you could sensibly do.

I can completely sympathise. We are in a situation where it's clear that DM really needs some sort of residential care (one or 2 HCP who have got to know the situation better have said as much, so it's not just me) but whilst DM and Brother say she's fine and the answer to every question is 'my son does that for me' no one is going to force the issue.

Well it's all rapidly going to 💩again.... Elderly relative (ER) completely refuses to engage with social workers (to the point the ward staff and hospital security have had to get involved). They want to reassess capacity but can't while she's so aggressive. So now they're saying ER is too complex for the older adults ASC team, but geripsych won't see her as she's not got classic dementia, and adult MH won't see her as she has no diagnosis and refuses to engage. Our last chance is that they're commissioning an independent MCA advocate who might be able to build up a relationship, but it's unlikely.

So round we go again! She'll be discharged from all services because they don't want to deal with her, probably found to have regained capacity so then she'll fire her carers and she'll sit at home drinking until her neighbours call the police again. I don't understand how everyone can wash their hands of someone just for being "complex". I've worked with "complex" in children, and we fight to the bitter end, but clearly not for elderly people......

@rookiemere has the GP actually seen your DM in person?

My DM's GP very, very seldom makes an actual appearance at the CH. Instead there is a weekly phone call from CH to surgery. This isnt always done by the nurse. Messages get diluted hugely.

Even if the GP does make an appearance it is never more than a fleeting visit. Probably so that he can tick a box somewhere.

My sister and I had thought that only a major crisis would allow us to change anything so when the heart attack happened we thought the time had come.

But the hospital admitted her, put a stent in, and she was home 36 hours later! I pleaded with them not to chuck her out but they just said, Well, what help have you organised? NONE! BECAUSE YOU HAVEN'T GIVEN US ANY TIME! She was a frail, wobbly 92 year old with a heart attack but they said there wasn't a single free bed in the whole building to keep her. I even got my brother to come to the ward and rehearsed telling them that he wasn't able to help but no, home she went.

So the emergency SW team got involved (a couple of weeks later) but they explained they were only for crisis intervention. When they withdrew, she got rid of the carers they arranged, announced there was nothing wrong with her heart, she'd just overheated was all, and here we are.

So, tragic though it is, I think that the only way out of this problem is a one-way ticket to the afterlife. That sounds terrible but I can't see any other way.

And she might want my approval but obviously I can't give it.

Oh god, retyping the horrors of the post heart attack situatio has made me feel quite upset. I've obviously buried it.

And it was a couple of months after that that she banned me from going to the house as my disapproval upset her.

I've had to withdraw for my own sanity.

@Eclipsingyou are right of course, but being a bit more realistic about the cause of the anti depressant refusal rather than implying DM could be improved through the power of positive thinking would be helpful to me. @GnomeDePlumeyes not sure how often the GP visits the care home, in some cases I think he’s pretty wise to their ways of wanting to defer each and every decision to him and treat everything possible.

The whole thing seems a bit ludicrous at the minute. I was doing my DPs six month reviews with the very lovely team lead but some of the questions were nonsensical, including asking for ratings of care home and praise for specific staff along with what did I feel DMs aspirations for the next six months are, I wanted to say to die but went for remaining comfortable instead. When I asked my question about funeral director affiliations, she gave me the answer but also said she hoped that wouldn’t be needed for a while, even when we had already discussed DMs sudden decline and how she has written down that she would like to die.

I feel like I am trapped in a surreal chapter of Catch 22, and am breaking my 2 visit a week rule and going again today as I am meant to be on holiday next weekend and not sure DM will be around by the time I come back. Or she may linger for many more months as everyone else's DPs seem to.

Sympathies to those with DPs at home who shouldn’t be. However hard this is, it’s a hell of a lot easier than when they were at home.

The twist is that I used to be safeguarding lead at work! And now that I'm in the other side, no-one listens or believes me!

@rookiemere That sort of review is exactly the kind of thing I'd love them to do for my ER though. She is still very capable of having wants and aspirations, but her personality disorder prevents her from expressing them or engaging with support to achieve them, and instead pushes her into fight mode all the time.

If only someone would listen to the meaning behind the words, rather than just taking her words at face value! She's not "just" angry, she's sad and frightened and lonely. She desperately wants a different life, but her PD just forces her to sabotage any efforts anyone else makes to help her and she doesn't have the functioning to do it alone. None of us, family or Social Care have the expertise to go "underneath" the personality disorder and access "her" directly, and she won't engage with psych services who might do....

I remembered the other day that my Dad said to me (during Covid) "you're Mum is depressed, it's your job to make her happy" and I just thought WTF? How can that be MY job on top of raising two children, working etc. I said I wasn't taking that on and he just laughed but I think they have always seen me as having that role. And the emotional tax is huge, you're so right.

@EmotionalBlackmail My Mum has never had a problem with counselling surprisingly. I signed her up for bereavement counselling (with her permission) and she was okay with it. She doesn't think it works but I think she finds it cathartic to talk to someone professional. If it's any consolation, it doesn't stop her making everyone else miserable!

@rookiemere I'm sorry the GP wouldn't prescribe anything for your Mum. What harm could it do?

@Eclipsing it sounds like you have done everything in your power. Some people just genuinely don't want to be helped. I hope you're okay.

There are so many frustrating stories on here of DP refusing help or saying an ill-equipped member of the family will support them and those with the power to actually do something just take it at face value. Do you think they are knowingly sending people away without support because adult social care is under such strain or do you think they believe the stories they are being told?

@Eclipsing good luck for the visit.
@roundaboutthehillsareshining this all sounds frustrating, how can they decide someone is too challenging?

Things are bumbling along ok here.
Another few things crossed off the list at the weekend, including a new small vacuum and slippers purchased.
Also had lunch at the nice cafe at the farm shop.

The problem is that she doesn't trust herself to go out on her own, without feeling wobbly and falling over. So she's stuck.

I need to prod the falls people at the council, who seems to have ignored our request and convince her to go to the GUAG classes at the local leisure centre. It's only 5mins in a taxi and she's more than capable of ringing for one and I could go to the first couple with her (I'd take my work laptop and sit in the cafe!).

But then I feel like I'm nagging.

People shouldn't feel guilty about planning ahead to ensure their parent's funeral is well organised.

My DM was very much a planner and so when she was on her way out and I sent off for quotes from three undertakers, I thought she'd probably be proud of me (I didn't bring it up, I thought there were better topics of conversation in the limited time we had).
She'd expressed some interest in green burials but the local site had access through the potholed yard of an equine centre (I could see her being jolted out the back of the hearse!). Furthermore, the burial area itself had the unnerving air of the newly planted area on a housing estate, crossed with those information-boarded areas in Eastern Europe which tell you there's a mass grave of twenty thousand people under your feet.

The local cemetery, however, had plenty of mature trees, a very light touch attitude to regulations (quite a lot of grave plantings had definitely grown into the theoretically verboten shrubs), and, a man who lives nearby walks his duck there (!) (as dogs are banned).

Another elderly relative is living her best life with gusto and it's so sad the one I help out isn't following suit.

New thread and I have a new username - I've been here before and you have all been so lovely.

Mil is bed bound, she has carers coming in 4 times a day but she has got to the point that she can no longer go through the night alone. She is terrified of moving to a home.
Currently Sil (1) is staying with her overnight but she is quickly getting very exhausted - we can't help, as Mil would not accept dh (as a male) helping to the commode and I am not doing it. Other sil (2) feels the same as me - personal care is not something she is able to give.
Sil (1) is close to breaking point but will not give in - no one is allowed by sil (1) to talk to mil about a home becuase mil find it all too upsetting - not that MIL will willingly go to a home - what on earth happens here - mil can't be forced and she is very stubborn. Everyone is cracking. Dh is at a loss - both his sisters are very distressed as is his mother.
What can I advise? I've never known a situation like it.

@glasswings I can't advise but can sympathise. We have a slightly similar situation where essentially one sibling refuses to consider anything other than full time care for Mum at home by family and is annoyed that I (and a few extended family members that he somehow expected to get involved) won't give up our own lives to make that happen. What I'd like to do, if my sibling was more willing to have a sensible discussion, would be to try some very short term respite care. This could either be residential or carers coming in to her house. I think it would help show Mum that paid carers can be helpful and not scary and also demonstrate to sibling that she can be properly cared for without everyone else giving up their lives. My hope would be that it would give everyone a break and some perspective to have a proper discussion about longer term care. Do you think your Mum/SIL would be open to discussing that sort of thing?

We have offered respite care, we have offered to pay for it but SIL(1) says MIL won't have it - Mil will get very upset and cry and say she will use every ounce of strength to object to the move.

@glasswings ; we are all allowed to make poor decisions, but do you think your MIL has enough understanding of the situation and of the consequences of her decision? Does she have capacity?

I don't know - I think the consequences of her decision to stay at home on her dd's mental health and the family in general are not something she's been asked to face. And we are not allowed (by sil) to tell her. I don't know if she has capacity, dh says she is less alert than she was the last time I saw her - 7 days ago.

I agree that daycare and/or a short respite stay at a home of your choosing would be the best route @glasswings. Because to be honest, if your SIL falls ill with the strain she’s under, your MIL won’t have a choice and she’ll end up somewhere (any where) at short notice. At least this way you/her have a semblance of choice and control.

Sorry if this sounds a bit blunt - but is your MIL genuinely scared about residential care? Is it possible there’s an element of “getting upset” to keep your SIL there? You need the least painful way of getting through the upset and past it. Respite care is respite for the carers not her, you could try that approach?

@Exhaustedpickle my number one rule these days is that the only persons happiness I am responsible for is mine. I think it’s a realisation of how much my mums anxiety impacted all the family with us having to do stuff because otherwise she’d worry. It’s only relatively recently that I’ve realised it was her responsibility to deal with her anxiety and not lay it on us with an airy “you know what I’m like”.

@funnelfan
We are not entirely sure whether she is being upset to get her own way as such - there has been that suspicion. We have suggested it but we aren't allowed to talk to her about respite. She does understand she is getting worse.

@glasswings at the moment it sounds like SIL is as much part of the problem as MIL. I am guessing that SIL is soldiering on as it is easier, in the short term only, than having the conversation with MIL.

For MIL 'keeping it in the family' is a way of pretending she is still coping.

SIL has fallen into the boiling frog scenario. It starts as a little bit of help and support then slowly grows to full time care.

I do think that once independent continence is lost the next step is care home. Are there funds to pay for this?

Is there anyway that SIL could be persuaded to go away for a day? Be out of sight while you and other SIL have a stern conversation with MIL. The two of you be the bad guys.

You also need a firm conversation with SIL. If MIL is bedbound she needs profesional care. Turning, moving, equipment and training to avoid injuring herself and MIL.

Again you and other SIL taking the role of bad guys to hammer the message home.

Not being able to see the reality of her situation was one of my DM's earlier dementia symptoms. She did use her upset (screwing her face up and pretending to cry) to try to manipulate DB/me into 'taking her home'.

I would agree with this @glasswings - I appreciate SIL may always be present so it’s difficult, but it is not SIL’s decision what your DH may choose to discuss with his DM. Easy for me to say, much harder to apply in reality, but worth considering given SIL does seem to be burning out with this way of managing it. Good luck xxx

I agree with you both - but there is a lot of history here, when dh has discussed going a home with mil in the recent past and despite dh being very careful in his approach, mil called sil afterwards and was extremely upset, almost hysterical by sil's account, sil felt that she had to pick up the pieces and it wasn't fair on her - things were hard enough, the ramifications and accusations thrown at dh were incredibly upsetting for him and in the end nothing changed - except the relationship with sil. Dh is incredibly careful about making the situation worse - sil has set a standard of care and if the other siblings aren't willing to step up to that standard she will go it alone - she won't stop until she breaks.
That's not easy to watch and every time there is a crisis the problem gets bigger.

I have seen so many families in which a promise has been made that they would NEVER "put their ER into a home". So many of the family members end up totally exhausted, depressed and burnt out - but they made a promise and feel they have to keep it, come what may.

People don't realise how hard it is to care for someone full-time.

Professional nurses and carers don't do 24 hour shifts; they don't work 7 days a week; they don't work singlehandedly; they are trained to give personal care, to use equipment and to know when to seek other help; and they can access that help or equipment. They get paid holidays and can take sick leave. They also don't carry so much of an emotional burden as we do when caring for family members.

The absence of all those protective factors for the workers can even lead inadvertently to safeguarding issues for the elderly person (eg suboptimal care leading to bedsores or DOL concerns).

@glasswings , feel free to show your SIL this response from someone who's seen it all, many times before.