Too early for care home?

[Sky1]

Thank you @Sirena -> has it really come to this - spot on. i was thinking this earlier today, you must've heard me...

The care home is still on the agenda, but is being delayed it seems while different medications are being considered.

It will still be soon but not as soon as i thought earlier. . I feel like i'm reeling from one emotional state to another and back again. at the moment, i'm happy she's not going and seems brighter this afternoon but know tomorrow, or later on tonight, i'll be wishing she was someone safe and so on..

I understand how you feel, as you know many of us have been through the same process of moving a loved one to a care home. I had a feeling of 'has it really come to this' - my mother had been coping with carers at home which allowed a type of normality to continue. When she had to leave her home it was a blunt reminder of how ill she was. And it seemed like a huge mountain to climb - the entire logistics of it, as well as the emotional stresses of course.

We're all here to help whenever you need it.

 

[Sky1]

Hit the nail on the head @Sarasa - i can't believe it either. This morning something reminded me of a family event earlier in the year when Mum was on top form and very together and i thought of how quickly things go down hill (but then back up again). In a phone call about 15 mins ago Mum was again on form. Giving me a row for something or other. It's this variation that's so bloody awful and cruel. I've read other posts written by those caring for PWD who are aggressive, then loving and recognise them, and then not. The emotional toil of this long term must be . i[m not sure of the word..

I felt very much the same @Sky1 . I couldn't believe that my feisty, extremely together mother really needed to be in a care home. She had days when she seemed OK, or at least OK when I spoke to her on the phone or popped over to see her, and then days when she certainly wasn't. In the end she just wasn't safe at home, and a care home was the only option.

 

[Sirena]

@Sky1 As you and @Sarasa have said, it's the glimpses of the 'old mum' which make you think "maybe she's okay at home after all?" I had a lot of phone calls with my mother where she seemed very disconnected and barely understood what I was saying. Then suddenly there would be a call when she'd be chatting on happily and interacting almost normally. And then next time we were back to the disconnection. There never seemed to be an identifiable reason for it, there were just good days and then (increasingly) bad days.

 

[imthedaughter]

I often tell people who ask that moving dad into care was the worst and best thing I did for him.

For me to make the decision, arrange it and move him took strength I didn't know I had.

I did it for him, to make him safe.

It felt - at the same time - both selfish and selfless.

I cried a river in the process. I greived and raged and am still grieving.

But I've never questioned or regretted moving him there.

It was, ultimately, the best thing I could do for him.

You may, in time, feel the same way.

 

[Sky1]

Hi @Sirena

i had this exact experience today.

Within half an hour, I had one sensible conversation with Mum ( as clear as day) and this was followed by a call where she rang to tell me about something "my name" was discussing in her house.

I responded that i wasn't in her house and so I asked if i could speak to whoever..

Whoever had gone and then the conversation moved onto the weather and that was it.

Mum does this a lot. If a conversation is getting difficult, or she's unable to continue, she'll say "anyway, is it raining there?".

I assume this is a common practice. Guess it shows some ability to dodge difficulty, does this stop as the dementia develops? If so, what sort of tactics is it replaced with? silence ? aggression?

@Sky1 As you and @Sarasa have said, it's the glimpses of the 'old mum' which make you think "maybe she's okay at home after all?" I had a lot of phone calls with my mother where she seemed very disconnected and barely understood what I was saying. Then suddenly there would be a call when she'd be chatting on happily and interacting almost normally. And then next time we were back to the disconnection. There never seemed to be an identifiable reason for it, there were just good days and then (increasingly) bad days.

 

[Sky1]

Thanks @imthedaughter Mum's not moved into residential care yet and has been quite good over the weekend and so i am definitely feeling that it would be the worst thing i could do to her.. I'm at the selfish stage. Tomorrow or later today i might feel differently.. I hope i have your strength, and that of most of those i read on TP, when the time comes.

I often tell people who ask that moving dad into care was the worst and best thing I did for him.

For me to make the decision, arrange it and move him took strength I didn't know I had.

I did it for him, to make him safe.

It felt - at the same time - both selfish and selfless.

I cried a river in the process. I greived and raged and am still grieving.

But I've never questioned or regretted moving him there.

It was, ultimately, the best thing I could do for him.

You may, in time, feel the same way.

 

[imthedaughter]

Thanks @imthedaughter Mum's not moved into residential care yet and has been quite good over the weekend and so i am definitely feeling that it would be the worst thing i could do to her.. I'm at the selfish stage. Tomorrow or later today i might feel differently.. I hope i have your strength, and that of most of those i read on TP, when the time comes.

Ah yes well you have to reach a point where this decision is a bit clearer, perhaps. I have also been known to say that the care home was more for my peace of mind than dad's needs, but that is no longer (and perhaps was never) true.

I don't know about you but I find it easier to blame myself for things.

 

[Sky1]

The care home seems to be off the agenda now, or in the near future.

The Dr is confident meds are having a positive effect and will allow Mum to manage at home for longer.

The Dr is right, sometimes but not others.

Her hallucinations seem to be less vivid. But Mum is moving things around the house constantly, losing things, including house keys meaning she can't get out, and packing up to go home on a near daily basis.

The neighbours have been great, but they are becoming increasingly worried and nervous of Mum's behaviour. They speak of her getting worse and more demanding. From their reports, she seems to be in a state of near panic for quite some part of the day.

When I speak to her, she is confused and forgetful, but sounds quite calm and on top of things, mostly.

I have heard her talking of leaving and being packed up, but have managed to talk her out of it. I'm concerned that she will listen to me less and less if she's becoming more irritated and demanding.

The suggestion for the next steps is to arrange for carers to come in, but I'm still not convinced this is the best thing. Mum will still be on her own for most of the day and the above behaviours will still be present. Although, getting support in will be better than nothing and will keep her safe for more of the day.

If getting carers in is the best thing?, if Mum will be self funding, would you advise getting a social services needs assessment or going direct to a private agency.?

What is the advantage of involving social services, views seem to be mixed on this and I'm not sure.

thanks Sky1

 

[Linsac]

Hi Sky your mum sounds quite similar to mine with some of her behaviours. My mum is coming home from a 3 month stay in hospital then respite care today with carers coming in 4 times a day. I have no idea if this will work as you rightly say, she will be on her own for the majority of the day still. I am planning on staying over night with her initially to see how she settles in and depending on how she is, I would consider 24 hour care before a care home at the moment due to Covid and not being able to visit etc.

If she is self funding then I would just organise it yourself otherwise you will have to unnecessarily do the financial forms. Ring round a few agencies and have a chat. At least you know someone would be checking on her daily if you can't get to see her.

 

[Sarasa]

Hi @Sky1. I think the GP may well be being over optimistic. The medication may take the edge off her worries but it won't address the problems of feeling lonely or being confused. Is anyone coming in to administer the medication? Mum was fine with managing her own medication for a long time, then it went downhill very fast. She hid tablets to keep them safe from the neighbours, then couldn't find them, had arguments with the pharmacy when she got confused over when should collect them and finally had a total meltdown in the GPs surgery accusing them of deliberately withholding her meds. Fortunately she was on nothing critical and the GP and I stopped everything completely. It had been suggested sight unseen by the memory clinic she take risperidone, but without close supervision neither the GP or I thought that sensible.
You are at a tricky stage where trying to move your mother into care, even though that sounds like what she needs, could lead to accusations of depriving her of her liberty if she has the capacity to make decisions unwise though they may be.
Would your mum accept carers. I tried to get someone in from Age Concern to do a little housework help with the shopping but mum refused point blank. You could try something like that, maybe saying that it is a job creation scheme and she can help the person out.
Could the neighbours either keep records of what happens so you have more evidence to show to the GP or phone 111 when your mother is distressed and worrying them. The more evidence there is that she needs more care the easier it will be to move her into care.
In the end, and this could happen very soon, a care home will be the only solution. Have you started looking at ones you think might be suitable. Tricky at the moment, but if you find the right fit I'm sure your mum will thrive.

 

[Sirena]

Hi @Sirena

i had this exact experience today.

Within half an hour, I had one sensible conversation with Mum ( as clear as day) and this was followed by a call where she rang to tell me about something "my name" was discussing in her house.

I responded that i wasn't in her house and so I asked if i could speak to whoever..

Whoever had gone and then the conversation moved onto the weather and that was it.

Mum does this a lot. If a conversation is getting difficult, or she's unable to continue, she'll say "anyway, is it raining there?".

I assume this is a common practice. Guess it shows some ability to dodge difficulty, does this stop as the dementia develops? If so, what sort of tactics is it replaced with? silence ? aggression?

I think 'what it is replaced with' varies from person to person. My mother had a lot of 'stock phrases' (similar to your mother's weather talk) and her replies would often be something general like 'oh yes that's lovely darling'. She called everyone darling (still does) as it saves her admitting she has no idea what your name is.

Since she has been in the care home I've found the only things she can converse about are things she can actually see - either what is happening now (if there is an activity ongoing) or otherwise something in a magazine or newspaper. She still leafs through the newspaper every day (at least she did when I last saw her) and astonishingly, she can still read. She doesn't understand what it means, but she can read out the sentences.

You say the neighbours believe she is often in a state of panic. That is what my mother's neighbours said too. It's because she is on her own and she is not rooted in time or space, she has no idea what is going on, when she last saw someone, when they will next be there - and that's frightening.

If you want to engage a private care agency there is no point getting SS involved, they will not be interested if your mother is self funding. The agency will do their own needs assessment. In terms of 'is there any point', I suspect at this stage the answer is no, she needs 24 hour supervision, but it is worth trying.

 

[Rosettastone57]

My mother in law was self funding and had carers for 3 years which was arranged privately. I never involved SS as I thought they probably wouldn't be interested. The one occasion I spoke to SS for further advice, it was clear that as a self funder they would only send out some leaflets and it was very much a case of getting on with things myself. Even when it got to the stage of full time care, I just arranged it myself. My mother in law had pre existing mental health issues before the dementia and I knew she wouldn't engage with SS or other health professionals so with existing LPA for finance, I made arrangements for an assessment from a care agency. She started with a morning call and eventually was having 3 calls a day

 

[Jan Di]

Can I just ask - presumably even if an LPA is in place it is not possible to put loved one into a care home if they are not agreeable unless they are deemed not to have ‘capacity’ which has to be ascertained and registered by the ‘professionals’. Can anyone confirm or deny.

 

[Sarasa]

Hi @Jan Di, I think it is a bit of a grey area, and one which I rather naively walked into. My mother was a danger to herself at home, going off and drinking with random men in the local pub and on at least one occasion bringing someone home. Fortunately they seemed to be honourable. She was also becoming increasingly aggressive with the neighbours. But, and it's a big but she knew where she was, could just about go out for a coffee and cake and back again, manage personal care etc. I lived two trains and a bus away and though I went over every few days she was beginning to have mini crises that meant someone closer to hand (usually her best friend) going to sort it out. On a good day she was funny, charming and seemed able to have a conversation on a range of topics. As I knew all her stories I knew a lot of what she said wasn't factual, but it sounded convincing. She'd agreed to sell her flat and move to extra care sheltered accommodation near my brother. We hadn't actually firmed that up, though she had seen and liked the flats. I had my doubts as I felt she needed more than they could provide. Then my brother became seriously ill, just at the time we got a buyer for her flat. I got mum to agree she'd move near me while new flat was sorted, not telling her it was a care home. Of course she kicked off big time when she knew she had been tricked. The home applied for a deprivation of liberty safeguarding order (DoLS) and I was worried they would say she had capacity and could therefore go home. They agreed she didn't and she has been living in the home ever since.
It still feels very mean, but if I hadn't done it she would have had some sort of disaster, arrested for hitting a neighbour, robbed by a not so nice bloke from the pub, run over trying to cross the road. I prefer what I did to that.

 

[Rosettastone57]

Hi @Jan Di it's a difficult area that has often come up on the forum. This is what happened with my mother in law....she was on her own in her own home and self funding. She had carers but it became obvious that she was unable to cope in her own home . She no longer recognised her own bathroom and was faecally incontinent . She refused point blank to go into care. She had no social service input and I think she would have been assessed as having capacity with a good social facade to professionals.
So as she refused to go out of her house, we waited for a crisis. She became ill in the heatwave of 2018. She went into hospital and I arranged for a care home. The care home came to assess her and she put on such a good social facade and told them she was happy to stay there for a while and do cooking that they accepted her. The hospital were happy with this although they considered her to still have capacity.
Once in the home, her GP accepted our LPA for health as her having no capacity and we were then consulted on her care.

I have no regrets about the actions we took. It was in her best interests.

 

[Sky1]

Thanks @Linsac
Mum didn't have a good day yesterday, high level of confusion and firefighting. I didn't get around to thinking about carers, medics are increasing calls to try and manage meds and so I think i'll see how that goes for now. I rang a few agencies a couple of weeks ago, though and found one i really liked.

covid and residential care is another thing isn't it. one risk vs another risk.

Hi Sky your mum sounds quite similar to mine with some of her behaviours. My mum is coming home from a 3 month stay in hospital then respite care today with carers coming in 4 times a day. I have no idea if this will work as you rightly say, she will be on her own for the majority of the day still. I am planning on staying over night with her initially to see how she settles in and depending on how she is, I would consider 24 hour care before a care home at the moment due to Covid and not being able to visit etc.

If she is self funding then I would just organise it yourself otherwise you will have to unnecessarily do the financial forms. Ring round a few agencies and have a chat. At least you know someone would be checking on her daily if you can't get to see her.

 

[Sky1]

You are absolutely right here @Sarasa - this is exactly where we are. One hour we're one side of the line and the next, we're the other. Dr says Mum has lost capacity, but her view is being taken into account when it comes to her refusal to go into hospital for assessment. I can see the Dr's view. Mum clearly has no idea of her actions, but is very clear on her desire not to be assessed. All i can do is keep informing people of Mum's behaviours and my concerns. I'm sure we'll get there, but hopefully before it reaches a crisis point.

Mum might accept carers, if they were called something else! She's used to the nurses coming in now and although she doesn't like it she seems to dislike it less that she did. So, if things stay as is, Mum and home, I will arrange support / housework support and see how it goes.

The neighbours have been great. The medics have spoken to them a few times. Much as i'm not very keen on this, and neither would Mum be, it is more evidence of Mum's behaviour and so i can see the value.

i have looked at a few residential homes, online, reviews, CQC reports and a drive by. I've chosen the one i think best and they've been very supportive of the will she-won't she. Mum's still on their list and so we'll see how that goes.

Thank for your saying Mum might thrive. She might. The second wave and lockdowns might be another reason to move. She might be isolated all winter. I'll see how it goes over the weekend.

You are at a tricky stage where trying to move your mother into care, even though that sounds like what she needs, could lead to accusations of depriving her of her liberty if she has the capacity to make decisions unwise though they may be.
Would your mum accept carers. I tried to get someone in from Age Concern to do a little housework help with the shopping but mum refused point blank. You could try something like that, maybe saying that it is a job creation scheme and she can help the person out.
Could the neighbours either keep records of what happens so you have more evidence to show to the GP or phone 111 when your mother is distressed and worrying them. The more evidence there is that she needs more care the easier it will be to move her into care.
In the end, and this could happen very soon, a care home will be the only solution. Have you started looking at ones you think might be suitable. Tricky at the moment, but if you find the right fit I'm sure your mum will thrive.

 

[Sky1]

Thanks @Sirena as i've read more, i can see that getting SS involved might be of little use. I've spoken to a few private agencies and have found one i like. They are able to move at short notice, if i need to.

24 hour supervision. I agree, especially after a very tricky day yesterday. the medics seem to agree that she needs more support, but are not yet at the point where they feel able to progress to a hospital move.

Because of her refusal, this would require sectioning. In many, many ways I'm very glad that they aren't taking this step lightly, but on the other hand i want Mum to be safe and supported.

If you want to engage a private care agency there is no point getting SS involved, they will not be interested if your mother is self funding. The agency will do their own needs assessment. In terms of 'is there any point', I suspect at this stage the answer is no, she needs 24 hour supervision, but it is worth trying.

 

[Sky1]

The Dr has said that Mum has lost capacity, but they are still not at the point where they feel able to force Mum by sectioning and then moving into hospital or care. There seems to be lost capacity and really lost capacity or lost capacity for certain things and not others. I'm not clear on the line, but the medics seem to know. Based on Mum's response to their request to go into hospital for assessment, they know what she wants. She says No, very clearly and without doubt.

Can I just ask - presumably even if an LPA is in place it is not possible to put loved one into a care home if they are not agreeable unless they are deemed not to have ‘capacity’ which has to be ascertained and registered by the ‘professionals’. Can anyone confirm or deny.

 

[Sarasa]

@Sky1, hope today is a better day. I had several years of hating to pick up the phone (mum was the only person to ring me) as I never knew if it was just for a chat or she was having a crisis. I lived too far away to be able to pop round and without a car couldn't get there quickly either. When mum went into care we got rid of the landline. My husband hated the phone as it was one for deaf people with a very loud ring that made me jump when I had my aids in and the neighbours complain.
Glad your mum accepts the medical visits. I think mum would have done that as long as no one said her medication was due to her mental health. As for any other sort of help, unless it was from family and friends she claimed she could manage, no matter what I called it.