Mother in Law - Dementia and refusing residential care

All about caring
1

I looking for advice regarding my 87 year old mother in law who is showing signs of memory issues and mental decline. She is reliant on carers (4 visits daily) for all her physical needs, toileting, meals etc, as she cannot mobilise unaided.

In recent months, she has become much more muddled, sometimes argumentative and forgets even very recent events. She cannot recall names of household items, people - even family members and is sometimes adamant she is right when we know she has got something totally mixed up.

She also has an issue with swallowing which has manifested with her choking on food. This is a major concern as she lives alone and once the mealtime carers have left her eating, she is not supervised. My husband (her son) and I are only nearby NOK. One son lives abroad and although the other is local, a family rift 20 years ago has estranged him from mum, so he never has any contact with her or us.

At its worst, we can be called around 3 times in a week, but it does come and go. I was called today at work and had to drop everything and go.

The swallowing issue has been investigated with speech and language therapist, Barium swallow and mum’s GP has concluded it is more a “fear of choking” than an actual mechanical choking issue as there is no physical cause. Mum panics, presses her lifeline alarm who call us, we rush down to her (not easy when we also work) and usually arrive to find she has recovered and doesn’t know what the fuss is about. Today I got there and all she was more worried about was some food she had spilled on her cardigan and could I help her change, than the fact the 10 minutes before she was choking! The lifeline service have been on the verge of calling 999 on several occasions, as an elderly person choking sounds very serious, but as it usually subsides so quickly and is not an emergency situation, we have asked them to call us instead unless they are sure its a life and death issue.

Even though the GP visit and Barium procedure were only a few weeks ago, she has forgotten going to the hospital for the tests and says the Dr hasn’t been to seen her in months. The last GP to visit, acknowledged there was “mental decline” but concluded that there is little point in seeking a formal diagnosis, as its just a handle to hang a normal 87 year old’s age-related memory issues on. I can go back to the GP again, but as we currently don’t have LPA for her Health and Wellbeing, we are somewhat tied on how much they will listen or discuss with us.

With the frequent calls to attend her choking, we feel she is now a risk being on her own and eating unsupervised, but when we broach the subject she gets upset as she feels she is a burden to us, or says she just wants to die as she has no life now. We would do anything for her, but cannot sit with her at every meal time, nor can the home care company. They feel responsible as they provide her food and are aware of her choking problem, but do not have the capacity to have someone supervise mum eating every meal in case there is an issue.

We are at our wits end now, watching the clock at every meal time expecting a call. We would love to “cry wolf” and not attend, as we know she will clear the “choke” but if we risked that and anything happened, we would never forgive ourselves. I have read that dementia can result in reduced swallow function, so wondering if there is any advice on how we get a further assessment on this.

We would also like some advice on whether a dementia/memory assessment can have some benefit in making decisions on Mum’s behalf. We do not want to use it to force her into care or any other malicious intent, but feel she is becoming a risk to herself, living alone and not having any supervision. We are supposed to be going away for a few days next week - a belated Silver Wedding anniversary treat, but will be on tenterhooks the whole time waiting for a call. I told her today that she is a risk at home without anyone to keep an eye on her, and I know its a difficult situation, but she needs to think about it … even though she is confused, she is still adamant that she is not going into care. The issue is WE are the only ones everyone calls - if she rings the homecare company, they ring me … if she presses her lifeline, they ring me, or try to call 999 which is an utter waste of resources.

Thank you for your time if you have read this far. I have also emailed similar to our county Dementia Care Team in hope that they can give us some advice. I was really looking forward to our trip next week, our first break in over 2 years with Covid etc, but might as well not bother now :frowning:

2

NO ONE can be forced to care.
You CANNOT be at her beck and call.

I was disabled in a car accident, mum was very frail, prone to falling. I could not help if she fell, she had to be inspected by a paramedic before moving her.
I explained this to the Lifeline, and told them to call an ambulance. Each time this happens the ambulance service alert the GP.
Whilst you keep going, they will want you to. So I’m afraid you have to say NO. If you are at work, you must turn off your phone.

I know it’s awful, but the only way she is going to get the help she needs is residential care or a live in carer.
As she is incapable of making a good decision, then there needs to be a Best Interests Meeting or similar.
Charles, one of our members, will be along presently with more information about this.
In the meantime, is mum claiming Attendance Allowance and exemption from Council Tax.
Who has Power of Attorney?

With regard to the swallowing, it may be partly caused by the dementia, maybe she’s forgetting how to swallow?

3

It maybe helpful to place a post on the above.

https://forum.alzheimers.org.uk/search/266377/?q=choking&o=relevance

4

Type out two letters to your Mum’s GP saying that your Mum authorises you and/or her son to discuss her health issues with them. Get your Mum to sign one and you sign the other, then take them to the surgery and they will put them on file. They may give you a password to use before they talk to you on the phone but it is worth it otherwise you get nowhere.

Choking on food when you have dementia is quite common as people forget how to actually eat. Care homes usually use thickener which they add to the food to prevent choking but I think they have to get GP to prescribe it.

My personal opinion is that a week’s respite in a care home would be best while you enjoy your holiday but you will need to book asap. The only other alternative is to get a live in carer for a week but if they don’t get on it won’t be successful.

5

Hi Witch Hazel. Mental Capacity is a convoluted subject and it’s not easy to be concise and accurate with it, so do check up on this: this is a good resource - https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/365631/making_decisions-opg601.pdf

Anyway - here goes, with apologies for the length!

There are a lot of misconceptions about the law on mental capacity. Probably the two biggest are that you either have mental capacity or you don’t, and that it’s about making good decisions.

If the last one were true, we’d all be judged to lack mental capacity, because everyone has made at least one bad decision in their lives. A mental capacity assessment is not interested in the quality of the decision itself. We all have the right to make mistakes. But it is interested in the quality of the decision making.

It is also decision specific. Your mum may be able, for example, to choose what she wants to wear, taking into account whether she’s going out or not, and what the weather is like. But she may not be able to decide about her care - again, for example.

A mental capacity assessment should take place at a time when your mum is most likely to be able to make a decision - with my Mum it had to be in the late morning, after she’d been awake for a couple of hours. Early morning, or after breakfast, she’d be confused. Any information used for decision making has to be in a format most likely to help. For my Mum, it had to be verbal in short sentences. Anything long she couldn’t focus for, and she’s lost the ability to comprehend most text, even though she can still manage word finders and “code words.”

There are four stages to decision making.

  1. Taking in and understanding the facts needed to make the decision
  2. Remembering those facts long enough to make the decision (often the sticking point for people with dementia)
  3. Weighing up the facts and the pros and cons for the decision required (often the sticking point for people with obsessive behaviours and thoughts)
  4. Making and communicating the decision

If the person concerned can go through all four stages successfully for the specific decision, then they have mental capacity. If they fail at any stage, then they cannot make the decision required and a Best Interests Meeting should go ahead to consider what is in the person’s best interests, taking into account that if that means that the person will be “deprived of liberty” in some way, then the least restrictive approach should be taken that is safe and supports their wellbeing. They should also take into account any evidence of prior decisions made when the person had capacity - e.g. “don’t ever put me in a care home.” My Mum had made a written statement in 2006 with my Dad that, should they become incapable of looking after themselves, they did not expect us to take on their care but that they should go into a care home. I found it among her papers while she was in hospital, and when we had the Best Interests Meeting, it was entered into the evidence for the decision.

The booklet I’ve linked above is a pretty useful guide to things. Hope everything gets sorted for you and your Mum.

And, please, TAKE THE BREAK!

6

Thanks for all replies.

I have calmed down a bit since my ranty post yesterday, but it still remains that we do feel “tied” to her. I had a reply from Adult Social Care this morning saying they will arrange an urgent case review; They have a Covid backlog so it might not be quick, but at least she is on their list.

We have to be careful as when she originally became physically disabled a few years ago, she was hospitalised for 6 months, had spinal surgery and intense physio to try to get her on her feet again. At that time we were advised by the hospital and Social Worker that she would be unable to manage at home and we looked into residential, visited several and she was on the verge of going into one, when she suddenly changed her mind and cancelled it all. We were shut out of the loop and the home care package was arranged and has just about coped with her care needs ever since. I had a contact in the department, and I know we were cited as wanting to push her into residential care against her wishes so this has gone on her file and we don’t have LPA for her health/care issues, only financial. I need to tiptoe around Adult Care now for fear of being branded as going against Mum’s wishes again, so the only way we would be able to force the issue is to refuse all support (shopping, laundry, errands, banking and bill paying and lifeline call outs day or night) which we don’t feel strong enough to do yet. Its hard refusing to go when she calls, but she needs to understand how much her stubborn refusal to take the care step she needs is impacting on our lives. I don’t mind the wet bedding, shitty knickers etc that we have had to deal with over the last 4 years, even though I often say I would gladly parcel them up and send to her other sons to wash!

I will read the links provided and hopefully will hear back from someone with a modicum of understanding from Social Care that I can actually explain this to without being judged as a daughter in law who wants to chuck her MIL in a home and forget about her …

Thanks all …

7

You should NOT have been “shut out of the loop” the first time round!
Did they do a Carers Assessment to assess your ability to care, or even ask if you wanted to care.
No one can be forced to care.

It’s not only MIL getting older, it’s you too. If you don’t feel you can do it any more, then make that really clear.

Write a time diary for the week.
What are you mainly doing in each hour of the day?
I know you know you are doing a lot, but just how much will be a shock.

Keep a similar record of how much “me” or “we” time you and your husband have.
This sort of record can be invaluable when dealing with officials.
Then plan a week away, just you and your husband, turning your phones off completely.
Then let it all fall down like a house of cards, unless of course the rest of the family step in???!!!

8

Also please be aware that you can set the limits on what you’re prepared to do. As you have LPA for financial stuff you might want to stay involved with those issues, for example - so shopping, banking, bills, etc. But that may be all you’re prepared to do and that is fine. You are in control and can set those limits.

It is the local authority that has duty of care, not you.

9

Well … my mobile went at 12.45 … Lifeline service “Had a call from your MIL, she’s choking on her lunch” … dropped everything AGAIN, and rushed down to her … more fool me. Found her looking very sheepish, but NOT choking. I asked why she had pressed her alarm … “I couldn’t clear my throat” … but you are OK now, “Mmmm, but my cardigan is dirty, can you get me a clean one” … AGAIN … FFS … I should probably be ashamed of myself but I read her the riot act … we ARE going away this week, we ARE NOT going to be called, so she will have to make the Lifeline alarm staff ring 999 and get her an ambulance and take her into hospital as thats the only choice if we are not here … They will assess you and probably decide you are not fit to be home alone … and even when we are back next week, I can’t keep leaving work like this as I will lose my job … unlikely but she doesn’t know that …

She got annoyed and said there is no way she is going into a home and would rather starve herself. I rang the homecare company on way home and told them she has gone without lunch again as I chucked it away. I rang social care and told them I want to speak to a Case Co urgently about daycare for her at the very least, so she can be supervised whilst eating. I rang her GP and was in a queue of 20, so have submitted an eConsult with a request to urgently call back as 87 year old patient is at risk being home alone and no one seems to want to give a damn …

Hubby said if she calls lifeline again about the same issue, HE will speak to them and tell them WE are not responding this time …

Part of me feels like I have to stamp my feet to get anyone to take notice, and the other half makes me feel like a total bitch … then I remind myself that my own mother sadly passed away 10 years ago, and I married my husband in sickness and in health, and not his mother … sorry for the rant, but I have had enough … :frowning:

10

DON’T ANSWER THE PHONE AGAIN!!!

11

There are very, very few people with dementia who will agree to go into a care home. People with dementia are afraid of change. So you have to use stealth and “love lies” to get them there. My mum went into her care home from hospital after a mini-stroke and the doctors made it quite plain that she could not return home, so I presented it to her as “convalescence” and never told her that she could not return home. Other people have referred to it as a “holiday in a nice hotel where the staff will wait on you hand and foot”. Try and think of something that would be acceptable to her. A care home that is used to dementia will know how to handle the anxiety.

12

Oh Witch Hazel, what a hideous situation?! It’s hard enough when it’s our blood relative or a chosen loved one. The issue of ‘putting someone in a care home’ is so divisive and stimulates such strong feelings in all parties. I don’t think anyone ever WANTS to go in a care home, and only the most heartless would want a loved one to go in if there is a workable alternative. Is your MIL is self funding? The more I hear about SS the more I want to punch myself in the face. I don’t know if it’s certain ones or if they all start out with good intentions but get jaded etc, but their ability to make people feel guilty for not being able to DO IT ALL must be part of their basic training.

The advice from Charles is brilliant (Thank you Charles! One of the single most helpful things I have read in the last 4 months!) and Bowling Bun is bang on as always - sometimes we have to stamp our feet and refuse to play ball in order to make a change. This business of 4 visits that seems to exist everywhere is ridiculous - I’ve yet to hear of a valid response as to why they can’t increase the time spent at each visit to accommodate the extra needs. It seems to be 4 visits of up to an hour and the next step is full time care. Even with my autism I can see there’s an awful lot of grey area between that black and white. It makes far more sense both financially and morally, to extend a visit where a meal has been provided to include ensuring the person doesn’t choke! It blows my mind that this extra, say, 1.5 hours a day (30 mins per meal), automatically triggers the response of a) the family aren’t doing enough, or b) the person needs full time care.

I hope you manage to feel comfortable enough refusing to respond so that you can have your time away without feeling guilty or waiting for the phone to ring etc. When I wasn’t able to get to my Dad for a few days I called the careline and informed them I was away and could they change the order of the responders for that week. It’s very common. I don’t know if your careline is the same as ours (Argenti) but if they get buzzed and don’t get a response or the resident asks for attention, they have to call the paramedics and they can only call them off if someone else arrives on site and says everything is sorted. We had cameras at Dad’s so we could see if he’d alerted them by accident etc but they couldn’t stand down just from us seeing footage of him being ok. If not, could you install a camera so that you can see if she’s GENUINELY choking before running over just to change a cardi?