No future planning and now crisis

[disappearingfish]

SIL is 83 and her health, mobility and balance have been deteriorating steadily over the last few years. She has resisted any real interventions, just the bare minimum of adaptations.

She fell this week and spent 6 hours on the floor before the paramedics came to get her up. Now she's frightened of being alone and she's taken to ringing everyone in her address book and guilting them to coming over to fetch and carry for her, pressuring them to stay overnight. It's a flipping nightmare. DH (her brother) is her only local family so is being run ragged, guilted all the while she refuses to use the new electric recliner chair, the new accessible bed etc. etc.

She does have a carer but she's only supposed to pop in a few times a day and she's done nothing about any other care. She's off her head on meds half the time (including stashes of pills she's ferreted away which are years past their expiry date). She's shouting at everyone who doesn't jump to attention, including the doctor and DH. Her lovely kind neighbour has been in tears at the abuse she's had. I get that she's frightened but my god it's hard.

There's no LPOA or anything else in place that can enable people to make decisions in her best interest. Her children live far away, have their own lives and families and are doing their best. No real point to this post but just had to vent. We saw this coming years ago and have tried and tried to tackle it but she wouldn't listen.

I genuinely don't know what SIL's thought process was. She complained incessantly about being lonely, about being tired, about the work and money required to keep up the house and garden but still completely resistant to even looking at how to make her life more manageable or comfortable. Every little adjustment, like getting a home help in for one day a week, was agonised over. This was not a money issue, she has plenty of money to buy in help (although the nursing home fees she's being quoted now are absolutely eye watering!).

@MereDintofPandiculation
…staving off the recognition that they’re on the downward path to a care home, loss of most of their possessions and all of their autonomy… that is very insightful.
I think most of the frantic buying of stuff in recent years has also been about staving off this recognition too.
Unfortunately the money spent on ridiculous (Octopus candelabra!) and pointless (chain saw!) items is now depriving DF of wider options.

@disappearingfish I hear the resistant to even looking at how to make her life more manageable or comfortable there is a tendency to get very set in old ways - DF is holding onto bizarre behaviours that were only necessary in his home. No working cold taps upstairs meant DF was brushing his teeth (when he bothers) in the kitchen. Now he’s insisting his toothbrush be stored in the dish draining rack wherever he stays. This is just one example and there are worse ones I won’t share but reasoning is very difficult and has to be repeated due to the failing memory.

After the fourth fall in 2 weeks SiL went into hospital yesterday. Unlikely she will ever go home again so once she's up to it she will be picking between a choice of nursing homes.

It's played out exactly how everyone predicted. So sad that it's had to happen like this. The good thing is now she's in hospital she has no choice but to follow instructions, take the right medication (and nothing else!) so she should resolve some of the issues that she has.

This is exactly what happened to my very stubborn DM. So frustrating and she ended up far worse off physically than she needed to be because everything went wrong. But what can you do?
Thank you for updating and I hope things are a bit easier from now on...

This rings very true with our elderly relative. She wants to stay in her own home, but she is finding it impossible to accept that she isn't likely to regain the function she had before a recent bout of severe illness. I am not too closely involved (I live too far away), but her daughter is finding it difficult to balance her mother's needs with what her mother is willing to decide - or even discuss.

Luckily the whole hospital/discharge/enablement team experience has been fantastic, but this next year I can see being quite tough.

@disappearingfish on the plus side, as you say, some of her issues should now be on the path to resolution.

And as an aside, I need to start priming myself now, so that when I cannot manage at home and the DC say, 'Mum, it's time for a care home', I face up to it and go... Though that should be 2 or possibly 3 decades away.

It must be very difficult, and I did have sympathy for my mum's fear of losing independence, but at the same time, it's so hard to cope, when you can see that someone you respected, love and want the best for is making decisions that will actually make them less independent long-term.

My aunt has been in a care home for about 6 months and I think she timed it perfectly, she has a much better quality of life, energy to do some fun things whereas before it was an effort just to get through the day in one piece. She listened to the professionals and her family and although it was heartbreaking for everyone it was the right decision.

I don't know what made her so wise.

@disappearingfish I’m not glad that she’s in hospital but I’m glad this should be getting resolved for you. And her poor neighbours!

This is such an important topic OP. Why do t people plan for this? Why do they assume their relatives will drop everything and be at their beck and call, especially if they're treated so poorly?!
I hope to never become so entitled that I behave in such a way. My daughter has already told me she would tell me to snap right out of it, if I attempted to ( quite rightly too).

SiL is being as difficult in hospital as she was out of it. Constant demands, phoning her entire contacts list repeatedly, asking for impossible things like a private room and a bath.

They're sedating her just to give everyone some respite!

Her brother is able to request a Carer’s assessment in his own right from adult social services, even if your sil refuses a care needs assessment herself. This would alert them to the situation and in the case of an emergency allow respite to be organised more quickly for sil.
Does sil have capacity ? Is also contact sil GP and advise them of the situation . They may be able to discuss the issues with her- people often heed the advice of professionals even when they refuse to listen to family and friends .

It was dementia-related, but I’ve known of people having a dedicated basic mobile for such calls - delete any other number! - and have a recorded message to say, ‘Sorry, I can’t answer at the moment, but will call back later.’

And limit such calls to once or twice a day.
My poor Dbro had our DM ringing him up to 30 times in one hour! She simply couldn’t remember that she’d only just spoken to him. It was seriously starting to affect his mental health.

They're sedating her just to give everyone some respite!
That one line says so much, OP.
Sending medals to you are your DH and everyone on her calling list.

Yes, we're getting to the stage where we take a call and then block her number for a few hours, otherwise she calls incessantly. She is somewhat confused but I think also just bloody-minded, bored, anxious and has no understanding of how this is affecting everyone. She must be making about 100 calls a day to various people.

She is getting visitors by the way - between 2 and 5 a day so it's not like she's been forgotten.

Feeling your pain. Going through exactly this at the moment with parents (SD at end of life) both deteriorated lots in last few years with no forward planning despite us have conversations over and over.
Try contacting social services to see if they can help.
Good luck to you and your DH x

Going forward, OP, lets hope the meds she's been given to reduce her agitation work well and they decide to stick with them. Once the care home is selected, it's normal for a representative from that home to visit her in hospital to make sure that her needs can be met by them before she goes to them and everything is rubber stamped.

Just giving you the heads up - and it might not come to this- but be aware if she is assessed when she is 'less agitated' and then they subsequently withdraw the meds when she departs to the care home, her challenging behaviour might give her new place of residence a problem.

I think it's normal practice in a contract for the care home to have a six week 'getting to know you ' clause'. This is where it can be terminated by either party for whatever reason. DMil parted company with her first care home after six weeks because there were issues on both sides. I'm not saying you will run into this problem, but just have it on your radar. Take the opportunity to discuss with the hospital team their recommendation for these meds- whether they are purely a one-off or maybe for the long term. (At least get the name of them so you can suggest them further along the journey.}

Delirium is very common in elderly. It presents as dementia.

My poor Dbro had our DM ringing him up to 30 times in one hour! She simply couldn’t remember that she’d only just spoken to him.

Oh goodness. DH once made the mistake of leaving a note out with his mobile number for MiL's temporary lunchtime carer. DMiL 'found' the note and rang his number pretty much on repeat for the whole morning. 'Hello? Who is this? There was a note here with this number...'

Thanks @Mum5net she's had a massive medication review by the hospital doctors. I suspect she wore her GP down with constant requests for medicines, plus she was hoarding them, plus taking medication prescribed for her (now deceased) husband and mother. So she's off a lot of them and I think her system is adjusting. Part of her new agitation is that she's actually much more alert than event before (alert but not always making sense).

A care home has been identified but it's not an easy journey for us / her friends to make to visit her there, again, lack of forward planning!

Advice from doctors is that her current conditions could be managed successfully for years to come, but with little prospect of regaining any mobility or ability to care for herself but SIL can't really absorb that reality.

I have found being firm, tough love, helpful in a similar situation. I said that my help is conditional on them trying to help themselves first, whether it be accepting adaptions, or using equipment that has been provided, surrendering stashed of illicit medication, and treating me with respect. If they aren't trying, then nor would I. Otherwise you will end needing care too. GL, and sorry to hear you are having a tough time.

Being on a public transport route for her friends is a major consideration. However, the biggest 'decider' for us was the leadership provided by the care home manager. A visible and influential care home manager ultimately is the key, even if it is in a slightly awkward place. The continuity of staff and level of training they receive is also up there.
If the 'first' care home isn't right, she can be moved and I know all about this too,

Just an update from me. SIL is now in a care home and it's in equal parts heartbreaking and infuriating. She has continued to ignore/argue against all the instructions and advice she has been given and her physical abilities have declined massively as a result. She will never be able to walk again, she requires hoists to be moved and yet it still insisting that she can go home.

I won't go into all the details but she is raising hell with staff and upsetting the other residents. She's so rude! My worry now is that she'll be kicked out and there's nowhere else for her to go.

Also, care home staff are amazing, I don't know how they do it!