Making sure Mum gets the right care

All about caring
1

Hello,

I have posted here before about my 82yr old Mum. She has been admitted to hospital three times this year, first time staying a month, then two weeks, and we are now at three weeks on her third stay.

I think I have finally got her under the care of a really good specialist, who thinks she has severe anxiety and depression which is treatable with medication and therapy. He wants her to stay as an in-patient in a mental health unit.

She has lots of issues at the moment with memory and confusion. When the consultant first suggested moving to a mental health unit, she said “no”, then “ok”.

The doctors seeing her then thought she didn’t have capacity to understand decisions. We talked about assessment under the mental health act, with the consultant thinking Mum would be detained and could be kept in for treatment.

The assessment took place when Mum was lucid, and the doctors and social workers disagreed. They suggested that Mum be sent home with community support - though this has been and has failed three times, due to Mum’s anxiety and lack of engagement. After the meeting, Mum couldn’t remember what had happened or what had been said to her at all. She has some moments of clarity, but is mostly confused.

Now we are very concerned that Mum will be sent home, still unwell. Last time she was admitted to hospital she was hypothermic and had been standing naked in her kitchen with windows open and the heating off.

I live 30 miles away, work and have 3 primary school age children. Her cousin, who is 90 visits, but feels he cannot cope with being with her when she is in a state of extreme anxiety and agitation. Previously he has spent 9 hours a day with her, because he cares, and to some extent this masked her difficulties.

We have been through the cycle of hospital, home, care failing and readmission several times . I find myself liaising with 21 different professionals and teams who want to support my Mum, but don’t seem to communicate. The impact on my mental health is significant, and also for her cousin.

Is there a way we can have the teams take this into account? We know if they send her home, it will fail and we will go through the cycle all over again, and I don’t feel I can cope with that.

Could I ask for her to be treated in a NHS hub or respite setting instead?

I plan to talk to Age UK for advice too.

1 Like
2

Are the people making the decisions considering the fact that sending her home has failed so often.
A discharge has to be “safe”. Clearly, the previous arrangements were not safe, as they failed so quickly!

In a different situation, when the hospital were planning to send mum home with an arm in a sling, unable to use her Zimmer frame, therefore totally immobile, the only way I could get the hospital to see sense was to ring the Chief Executive’s Office and say that it was not safe to send an elderly woman home in this state! This worked. Most people want to please the boss of their organisation to protect their employment and promotion prospects!!

Be sure to keep a diary of date, name of who you speak to, time, what you discussed and what you agreed.
Mum’s inabilty to retain information for any length of time is very significant.
One of our forum members, Charles, will probably explain more about mental capacity presently.

3

I think I would be inclined to speak to …

4

Mental Capacity Assessments have to take place when the patient is at their most lucid, to give them the best chance of making a decision. In this case, they should have included as part of the discussion with your Mum that previous community support has failed during her less lucid moments. That would have been a heads up for the social workers and might have produced a different result.

It’s worth raising that as a concern that the decision your Mum reached was not properly informed.

5

There’s also something called fluctuating capacity, which sounds like it might be relevant here. We were advised to record any conversations where decisions were made in a lucid frame, especially ones that might be contradicted in less lucid times. They are supposed to take both extremes into account when deciding but so far I’ve found that people only take into account what suits their particular position. I don’t know if this is a ‘jaded by the system’ problem or that some people come into caring who really shouldn’t. My Dad had clear needs, he was assessed with the temp carer in the room that he was scared of, and because he said he didn’t need any help social services went on their way citing “capacity” without looking beyond the fact they had grounds to escape responsibility.

6

Mum was discharged, and home for 2 weeks again.

She has been telling the carers she’s OK and doesn’t need help, then sleeping on the sofa in her clothes :sleeping: they think she’s washed and dressed and ready for the day, but she’s never been in bed. None of the food I bought in the past two weeks has been eaten. The laundry I laid out on the bed hasn’t been moved for a week.

She fell twice in two days, and could not stand at all. Not even aided. Yesterday I was meant to take her to podiatry, but she got stuck on the stairs and almost fell from the top - she has refused having a commode downstairs :pensive: we waited 12 hours for an ambulance .

Her slippers and leg dressings are covered in cat poo and cat hair. I think we have to look for a care setting, but I am not looking forward to clearing her hoarded home :pensive:

I feel she’s unsafe at home now, is there such a thing as respite care while we work out a forward plan?

7

Alison,

yes respite care is an option, so too is an assessment placement in a care home. If she is admitted to hospital again then she is entitled to free rehab for six weeks and that you can push for that to be in a residential care.

Others will be a long to advice who have experience of this.

Melly1

8

Mum is clearly a very vulnerable adult, and Social Services should consider her wellbeing.
Make a list while it is still fresh in your mind of things that have happened in the last few weeks.
Does mum own or rent her home?
Do you live with her?

9

Thanks, this is her fourth time being admitted this year. The first time she refused all care and wouldn’t wait for it to be set up, so came home with nothing. The second and third time she has had a six week package of care put in place, but each time has been readmitted after two weeks.

She’s really struggling with memory and confusion.

My problem is though I ask for involvement with discharge and care planning, people often get back to me. I have ask for the hospital social work team to call me , and they haven’t.

I have heard of discharge to assess before, but I don’t really know what it means.

My worry is about taking action that would later prove to be unsuitable. My feeling is that my mother probably needs a care home, rather than extra care housing, but I know she will refuse everything.

10

Do you have concerns that your Mum might not really have the capacity to make a decision? That may be the case, depending on how her memory is working, for example. I’ve posted about this before, and it’s a difficult subject to be concise and accurate about, so you might like to look at this post: https://www.carersuk.org/forum/support-and-advice/all-about-caring/mother-in-law-dementia-and-refusing-residential-care-45434?p=453321&hilit=mental%20capacity#p453321 - it has a link to a very useful resource on the topic.

11

I am unable to advise in an experienced capacity, I just want to say that I hope they will see the need for your mother and that she will get a residential placement.

12

Thanks everyone, reading your replies and links is really helpful.

My mother saw her psychiatric consultant again, and she is in the same state as when she was discharged before. He wants her to be in a psychiatric hospital for a different course of treatment. She will have to be assessed under the Mental Health Act again - last time the two doctors didn’t agree, so she was sent home, and that didn’t work. I hope we can get her there this time. It is in her best interests, and she didn’t even remember the questions asked of her 10 minutes after her last assessment.

She has inability to make any decisions, and just says "I don’t know " to everyone and everything. I just really hope the team don’t suggest home again, as this is the third time it has failed this year.

13

I have just got back from visiting Mum.

She’s been asking me to cancel care, and I haven’t understood what she’s meant. I think a social worker has been to her house, talked about care, and made her sign something, on a touch screen, but she doesn’t know or understand what it is, and she doesn’t have a copy. She’s been told something about paying and is terrified about not affording it and being taken to court.

I asked the social worker to call me two weeks ago, and again this week, and they haven’t. I also asked to be involved with planning and I don’t get told about meetings. I am pretty mad about it. I wonder who I can complain to?

14

Go to the council website, search for Adult Services complaints. This goes to H Q not the local office!

1 Like
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I have written complaints to the hospital about her previous discharge, and to the council for adult social care services - I have quoted the Care Act Section 25, and NICE guidelines, and copied in the CQC and her GP. I am so sad for her, because the inaccurate judgement about capacity has put her at risk and exacerbated her health issues all over again.

16

I agree. So many people I have loved have survived until their 80’s or 90’s, but the last ten or fifteen were like a “half life”, still breathing, but unable to do all the things that made living important to them.
Mum loved her garden, but couldn’t do any gardening.
Mum in law used to cycle every where, until she developed dementia, and so on.
My lovely sister in law died of dementia at the age of 73. She used to run a cub pack, had a very responsible job, was so organised in the kitchen, we loved the feasts she cooked for us.
On the other hand my husband had a heart attack and died at 58. At least he didn’t suffer for years, but he has missed out on so much, especially not knowing his grandson.

17

It’s very sad, like a gradual folding in on the self again.

My latest saga is the GP practice won’t give me an email address, so, as I want her GP to have a copy of my PALS complaints, I have to post them on paper! They will then scan them onto the system! The world has gone mad :angry:

18

Talk to the Practice Manager. If he won’t help, talk to the CCCG!

19

Ugh, I have been trying to talk to Mum about her wishes for ongoing care, and she says she doesn’t know, and doesn’t understand. This leaves everything up to me, and makes setting up LPA very difficult.

20

Did you find out what it was that she’d signed or thought she’d signed? It might be worth going to your MP if you can’t get anywhere with the other complaints. I can’t remember where you are with the LPA - have you got one but you can’t enact it because she has been judged to have capacity? I would also keep a diary and perhaps even record as much of your conversations as possible as potential evidence of her fluctuating capacity.