MIL Care Plan - Social Services meeting

[CrepuscularCritter]

I've been posting in this topic a little about MIL's sudden onset of dementia. We have not been told her diagnosis yet, as she is currently being assessed.

She was previously in sheltered accommodation and managing well with some help with cleaning, laundry and shopping. Her short term memory decline has been so significant that we don't believe she will be able to return.

We have a meeting with social services this week to discuss future plans. We anticipate this will be for a care home. We don't have an answer yet as to whether she has a DOLs.

What should we expect from this meeting? I'd be grateful for any advice or insight you can give.

Where is your MIL now, in hospital or with you? It's not uncommon for dementia to really accelerate following a trauma like a bad fall or a hospital stay. Her sheltered accommodation will be reluctant to take her back if there are issues like incontinence, wandering or if there's a substantial risk of falls.

She is currently in a short stay assessment unit, where I believe she can remain for up to three more weeks. The unit were surprised that social services hadn't contacted us until this week (we rang them a fortnight ago, and they said they would contact us again in due course).

It's highly unlikely that she can return to sheltered accommodation as she has just started to wander. Both of us work full time, so we would not be able to keep her safe during the day.

You can expect to leave the meeting with the SW stating in their view, which type of accommodation would be most appropriate at this stage. From your post, a care home would seem the likely route, but they might know of a way she might extend her stay in sheltered housing with increased support.
Not every family will agree with their suggestion, but they are well placed to know what support exists locally.

Thank you all for your thoughts. That's been really helpful.

I suspect that we will need to be in agreement with what they propose as we can't really see a better option than a care home at this stage. As I understand it, does a DOLS mean that the social worker has the decision to make while taking our views onboard? It's all happened so quickly (within a month) that we are struggling to catch up.

In answer to a previous question, this started with what we thought was a UTI, which antibiotics failed to address. We had two 101 GP visits, the second of which resulted in us taking MIL to A&E when the GP tried and failed to get her admitted to hospital. Fortunately the team on duty admitted her quietly and calmly, and it was from there that she was admitted elsewhere for the current assessment.

It seems that her short term memory is very rocky, and she is also talking about people who died more than a decade ago as though they are still present. She thinks that DH still lives with her, and that her mum is still alive. It's so sad to see my assertive and cheeky MIL meek and somewhat frightened. She is asking us if her head is going to get better.

That is very sad OP. The self-awareness is the worst. Take it she is clear now of UTIs and they have ruled out delirium?

Unfortunately a hospital stay tends to trigger a steep decline in elderly people who are sort of 'ticking over' with mild dementia. There are actually a couple of threads on this forum atm where people are in exactly this situation with their own parents which you might find helpful - 'where do we go from here' and 'rapid decline after a broken hip.' I really don't know what hospital does to the elderly but it seems to be such a familiar pattern.

Sorry you are facing this, OP.
Assuming you are present at the meeting with the SW, make sure you aren't 'accidentally' guilt-tripped by either your MIL or the SW into agreeing to look after her yourselves. Make it clear that you simply can't. (full time work/ distance/ unsuitable house / your or DH's health issues (one of you must have some, surely??!).
I hope you get a satisfactory outcome.

@AInightingale Thanks for the suggestions for other threads dealing with the same issues. I had seen one, and will go and look for the other. The hospital stay does seem to be accelerating the process.

The instances of self-awareness are definitely heartbreaking.

I will be there for the meeting.

That's sage advice about the guilt-tripping.

Fortunately I am armed with two thoughts to steel my resolve. Firstly we would need a ramp built to get her in our house, and then she would be alone from 8-6. Even with carers four time daily, that would be unsafe. Because of the access issues, we have visited her for the past 7 years or so rather than her coming to us, and she doesn't know our local area well. If she left the house, she'd be totally lost and no one here would recognize her.

Secondly, I was a child carer for my stepdad. I recognize just how challenging a role it is, and saw the issues for my mum, such as two stress fractures of the knee. I have osteoporosis and two sorts of arthritis, so there is plenty I can report to explain that it just isn't viable.

Thanks for reminding me to muster my arguments and strengthen my resolve.

So we had the meeting with the social worker today.

MIL does not have DOLS in place yet, which surprised the social worker. We were in agreement (although the social worker was due to meet MIL in the afternoon) that she could not go back to her sheltered accommodation and would need residential care. We will get a list of possible places, and a fairly short time scale to visit and make arrangements.

We also need to clear MIL's accommodation, including getting things like the cooker disconnected to be moved. Looks as though it will be a busy fortnight ahead!

MIL herself was less sad today, although still asking when she would be going home. We need to be guided in how best to talk to her about this.

Thank you all for your support and help. It's much appreciated.

Hospitals are awful places and hopefully she will settle a bit once in the care home. Most old people seem to accept it. It's very sad but inevitable in so many cases. Clearing the sheltered flat is a pain though. We moved my mother twice in 14 months! Charities are usually glad of the furniture and appliances and will collect them. I hope you aren't feeling bad about not taking her back to your home - she has dementia and it sounds as if it's progressing rapidly, you would be looking at yet another move in the near future.

I agree with getting ready to avoid Social Work into guilt tripping you. In fact, a old colleague of mine whose DD was a Social Worker for older people told me to refuse to allow my relative to be discharged to my home if he was ever admitted into hospital as once they get you to accept the person into your home they will assume you are in charge of looking after them. Also, I know of an older man who was "diagnosed" as sudden onset dementia and put in a home by Social Work. He didn't have dementia. He had a urine infection. His wife, a very feisty woman, insisted he was let out of the home. He recovered from the urine infection and was back to normal. As you report your relative has had a very sudden and dramatic decline, you may want to check it's not a urine infection

That's a great idea on the charity donations; we will check BHF local to her, as I know they take furniture and white goods.

I do feel bad at not having her here, but I keep picturing her toddling down the street with her frame heading towards the main road, and that is steeling my resolve. You make a really good point that even if we could manage now (and one of us would have to stop work), the timescale for us coping would be short. The decline is so fast it's scary.

Thank you for your insight here, and I hope that your own situation has been bearable. I am hearing a voice of experience in what you say.

@GranPepper We were really lucky in that so far the social worker has not tried to guilt trip us at all. I went fully armed with our reasons, but didn't really need them.

We are pretty certain that this is not an UTI. She had one a year or so ago, and antibiotics soon addressed it. She's had three courses of different ABs this time around, and her confusion remains. Although we are not sure now many of the first set she took, despite us being very vigilant about pill counting and calling to check she had taken them.

My best wishes to everyone travelling this path, and thank you for being our safe space to talk about it all.

@CrepuscularCritter sympathy, it is a tough road to be on. One thing I did with my Dad when he was bouncing between hospital and reablement units was to tell him I wanted to get him out of there and find him ‘somewhere better’. He nodded along and actually said ‘Blue - that’s just what I have been thinking’.

I had no experience of nursing homes but struck gold in the one that could facilitate Dad. The minute I set foot in it I knew he would be well cared for. Real gut instinct . Best of luck.

Side note, but I've heard that quite often when people with dementia say they want to go home, chances are it isn't the home they were most recently living in. They are wanting to go to a home from when they were a child, or their first adult home, etc. So going home isn't ever something you are going to be able to arrange for them.

@SpikyHatePotato great point. My Dad never actually said he wanted to go ‘home’ he just kept saying he ‘needed to get out of here’. It was only our mother who interpreted and repeated that he ‘wants to come home’.

Wise words about what "home" means now, and thank you both for that. MIL is talking about upstairs, which can't be her current home as that is a top floor flat (unless she's explored further than we might have guessed!).

I also love thr advice on gut feel. That will help us in our decision in the next week or so. It feels like limbo at the moment. I have a notebook with lists, but until she has the DOLS, and we have something formal, I am loathe to do things like have the cooker disconnected and start packing up her flat. I reckon our part of that can be done in a day. She's not big on ornaments and throws out most things, which will make the packing more speedy.

Where she is now is actually lovely. It's an assessment centre, and she is on the ground floor overlooking a pretty garden. Her room is rather like my student accommodation back in the day: bed, chair, storage and desk. It doesn't feel clinical at all. We've been leaving just as lunch has arrived on a couple of occasions now and it looks and smells great. There's a dining room with tables of 4, set with place mats and pretty glasses. Staff are patient, unflappable and kind. I didn't realize such places existed.

@CrepuscularCritter not to be negative but …..one issue I had was that a lot of nursing homes did not have rooms available or couldn’t cater for the nursing needs Dad had. Make sure you know if EMD/EMI care is required as some homes are not registered for that.

EMD care is designed to provide a safe and secure environment that meets the unique needs of individuals with dementia, including memory loss, behavioural changes, and other cognitive impairments.

EMI stands for Elderly Mentally Infirm and normally describes people living with advanced stages of dementia. Care staff are trained in supporting people with challenging behaviour. The individual's behaviour and care requirements determines whether they require EMI care within a Residential Home or Nursing Home.

@BlueLegume That's my current worry. It seems as though they haven't completed her assessment yet, so I have been listing possible homes that cover the various categories.

I have a sense that the social worker will expect us to produce a suitable transfer out of a magician's hat, as she was somewhat evasive when I asked about likely vacancies within the timescale she is envisaging. We did, however, get an acknowledgement that MIL could stay where she is a little longer than the normal length of stay in her assessment unit in some circumstances. I'm not holding my breath on that one. The formal assessment seems to be taking forever, and 4 weeks of MIL's 6 week assessment stay have evaporated.