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How long will it take MIL with dementia to accept her carer?

(26 Posts)
CocktailQueen Wed 22-Jan-14 11:02:51

MIL has dementia, diagnosed Aug. She's had a carer, twice a week, couple of hours at a time, just to get her used to the idea, since Sept.

We now need to increase the carer's visits to every day. MIL is forgetting to eat, is not taking her BP/dementia medicine, and WILL NOT answer the phone - so we have no way of knowing she is all right.

She has moved into the kitchen as it's warmer. No idea what she does for the day. Dh does shopping with her every week - when he visited this week he said nothing in the fridge had been touched since last visit, and she hadn't eaten any frozen meals from the freezer. Seems to be living on toast and marmalade and tea.

Sometimes she seems to be fine with the carer, and has mentioned her in a positive way, but when dh saw her, on Monday, she was angry about everything - doesn't need a carer, doesn't want her help, sees it as interfering.

Dh asked if she didn't prefer having the house tidy and clean? No. Didn't she like having someone to talk to? No.

Dh asked her, what would you prefer? You have three choices. I leave you here by yourself, cancel the carers, leave you to muddle along by yourself. Or you carry on like this, accept the help, enjoy your life a bit more. or I put you in a home. She didn't answer.

Dh is finding this harder and harder to deal with. His brother and sister have both died. He is the only person MIL has left. He's spent so much time and effort with MIL doing things for her and helping her and she never says thank you, just criticises and makes everything as hard as possible.

It's hard to know how much of MIL's behaviour is dementia related and how much is just her personality.

So, help. Will she ever accept a carer? We'd hoped by now that the carer would be doing things like changing MIL's bed (hasn't been changed for years) or helping MIL to wash/bath and changing her clothes (also, hasn;'t been done for a year).

But no. MIL refuses to even entertain anything like that, and half the time when the carer visits MIL says she doesn't need anything doing and won't let the carer clean or dust.

What can we do?? We are 2 hours away from MIL.

DowntonTrout Wed 22-Jan-14 11:14:42

I'm sorry. You are going to have to make some difficult decisions in the future.

You cannot reason with someone with dementia. There is no point, it is a dead end argument. Even if your MIL was agreeing with you, she may well forget that agreement anyway as soon as you have spoken. We learnt to tell white lies and not argue with mum, whilst doing something completely different. Mum was never really happy in care, but she was safe and clean.

Daily carers is one thing, but as you are such a distance away it will come to the point where you will have no choice but to move her nearer to you or find a care home close by. Your MIL will not want to do either of those things but you and DH are better having the discussion about it now, than when it comes to crisis point.

Do you have POA set up? It will make things easier in the long run.

CocktailQueen Wed 22-Jan-14 11:19:30

Thanks Downton. I know it will come to that - the question is when. Dh and I are convinced that she will hate being in case and it could kill her. She is so stubborn. she gets so defensive and is so convinced that she can cope, when she can't.

Yes, DH has POA and we have already looked into care homes in our town. I fear that moving her will hasten the dementia. At the moment she walks up the road to M&S every morning to buy papers and bread, and talks to the shop assistants. She's always lived in her area. Taking her to live near us will be totally unfamiliar to her and she won't be able to go out by herself. Yet there's no point having her in a care home near her, as we are the only regular visitors.

Sigh.

DowntonTrout Wed 22-Jan-14 11:33:11

I do know how hard it is.

It can be extremely disorientating to move someone with dementia out if familiar surroundings. So when it comes to that, try and find a lasting solution and only do it once, if you can.

Your immediate problem is if your MIL is not taking her meds regularly and is missing meals, she will decline rapidly anyway. Is it time to get social services involved? Have you spoken to her GP?

I have just watched my mum die of malnutrition and dehydration, despite her being in nursing care. They could not force her to eat or take meds and that is a very slippery slope. But saying that, she had a good year in a residential home, before this, and during that time at least we could see that she was eating and taking meds and she was clean and safe. It was a fall and fractured hip that brought on the rapid decline. You cannot possibly police that from 2 hours away. Sometimes you have to remove your feelings from the situation and act in best interests. It may not be what your MIL would want but there does come a point where those decisions have to be made. Only you will know when it is time to make those decisions ( and it never feels like the right time!)

CocktailQueen Wed 22-Jan-14 12:04:26

Social services and her GP are involved. She has a dementia nurse who comes in to check on her. Her GP has advised keeping her in her own home hmm That's why we want the carer to come in every day, to ensure she takes her meds, ensures she is safe, and gives her one hot meal a day. They are our main concerns at the moment.

Sometimes you have to remove your feelings from the situation and act in best interests. It may not be what your MIL would want but there does come a point where those decisions have to be made. Only you will know when it is time to make those decisions ( and it never feels like the right time!)

You're right - but when will that time be? And I can imagine MIL kicking and screaming all the way out of her house. She has always said she'd leave her house feet first. sad

I'm so sorry about your mum, Downton. Hugs to you.

Needmoresleep Wed 22-Jan-14 13:28:50

We are here. My mother is in sheltered housing which she loves. She has a carer coming in every day to give her medication, and she has access to a "restaurant" for lunch every day. Before that and on her own she got into a terrible state and became very ill.

Essentially I had to tell her in no uncertain terms that the carer had to come in, or else she could not stay in the sheltered housing and a home was the only option. (True in that if she is no longer capable of semi-independent living she will have to move.) She hates the carer but ...tough. And the argument has been repeated enough that she gets that they are a necessity.

She cant cook, keeps turning the combi-boiler off at the switch so has no heat (luckily the ambient temperature from the other flats means she is OK) or hot water, and actually has no idea that she is on regular medication. But oddly she appears OK to most people and she herself feels independent.

I have now got an awkward dilemma, as she is not changing clothes and probably not washing. My original intention had been to provide more and more support to reflect the deterioration of her memory, and to help keep her somewhere where she feels independent and is very happy, for as long as possible. However if she wont accept carers doing more for her, this will be impossible.

I am therefore consulting in advance of a big showdown with my mother. (What you can and cant impose on someone is quite tricky. Its like dealing with a six year old, but obviously different.) As Downton says, there is no reasoning with someone with dementia. Actually it is more frustrating than that. I can have sensible conversations with my mother about sorting through her clothes to make sure that everything is clean, but two days later when the carer does this there is an almighty tantrum as she has completely forgotten.

I think I am now clear that in order to give my mother the best quality of life (and the psychiatrist says she is likely to live at least another decade) I should attempt to impose more care. She will hate someone coming in to give her a weekly bath and to put her clothes in the wash, but this will be extreme unhappiness for an hour or so, whereas she would hate a home, where such levels of care would be the norm, 24 hours a day.

She will hate me for this, but then she already does. Lucky brother is able to stay out of it so is able to bash in sibling supremacy. My mother now says she wants SiL to take over my role and that she will pay her. As if...

DowntonTrout Wed 22-Jan-14 16:42:41

When will that time come?

I can't say for you. But for us, it was when mums partner died suddenly of a stroke. Crisis point reached overnight. There was then no choice and we moved mum to a home the next day, near to us.

I can't say she was happy, she asked us for months "what am I doing here? Where is **?" I suspect mum was much worse than your DMIL at that point though, as she could not have been left alone at all. I'm sorry that I can't be much more help, but the point is, you do need a plan, for when that time comes, as it can happen as fast as that.

WynkenBlynkenandNod Wed 22-Jan-14 18:03:17

It's really really hard unfortunately. My Mother really isn't compliant with carers and fought them every step of the way. Live in Carers that my Brother arranged were a complete disaster with Mum locking them in and all sort. She wouldn't take her meds and had an arsenal of excuses to make them think she did but then hid them. She refused to wash and wear clean clothes. She doesn't accept there were any problems though.

She's now in a flat in a CH where she gets the care she needs but I think they find her difficult. She doesn't accept she needs to be there at all. The problem with carers coming into a home environment is they can only prompt medication, showering etc, they can't absolutely make sure it is done. Needsmoresleep , I hope it works with a care visit for a bath. None of the carers we had for Mum (daily and live in) could get her into the shower sadly. The CH are more able to get her to do it though still have problems.

Mum swore she would have to be carried out of the house. However in the event did get in the car, however she was told it was temporary. We were told that once someone has lost capacity you can get them out of their home using stealth and them once they have arrived in a CH, a Deprivation of Liberty Safeguard can be imposed for them to be held there. SS need to be on board with this and can advise.

CocktailQueen Wed 22-Jan-14 18:33:13

Wynken, that sounds horrible. I'm so sorry. Getting her out of her house by stealth? A Deprivation of Liberty Safeguard?

How will she/we pack anything for her to take? But I honestly can't imagine that she would ever willingly say, Oh, I'm ready to move into a home now. It will be horrible, I know it will.

CocktailQueen Wed 22-Jan-14 18:34:18

Thanks, Downton. I have contacted some local care homes and plan to visit them with dh just so we have more of an idea of what is available near us. But do we choose or ask MIL to come and help choose?!

CocktailQueen Wed 22-Jan-14 18:35:45

Needmoresleep, your mum sounds very similar to my MIL.

I should attempt to impose more care. She will hate someone coming in to give her a weekly bath and to put her clothes in the wash, but this will be extreme unhappiness for an hour or so, whereas she would hate a home, where such levels of care would be the norm, 24 hours a day.

But a carer at home can't make MIL wash... perhaps this is the answer.

WynkenBlynkenandNod Wed 22-Jan-14 19:03:23

I'd look on your own personally, there's no way I would have wanted Mum to see some of them. She did see the one she is in before and at one point agreed to go. She first went one day when ill with a UTI and was saying ah needed to be there but quickly changed her mind when better.

I think if it comes to it CQ, you tell her you are all going on a visit somewhere, then one person goes back and packs her case. Or you say you're going to a hotel. If you look at the Talking Point forum there are various tactics that people have used. Frankly it is shit but sometimes you have to do what you have to do. The SW was on standby to help persuade Mum but luckily we didn't need her.

What happened with Mum is the Carer pretended her Mother was ill and suddenly had to leave. My Brother said the Care Agency said no one was available until the next booked person so she had to spend a few days back in the CH until the next carer. She insisted we stop for coffee en route and I thought she might refuse to get back in the car but she did. I think we were very lucky and I was expecting it to be much worse. The SW has applied for a Deprivation of Liberty Safeguard otherwise the minute she stood up and said she wanted to go, the CH would have had to let her. These can only be applied if the person no longer has capacity.

CocktailQueen Wed 22-Jan-14 19:43:39

And who decides if she still has capacity, Wynken?

WynkenBlynkenandNod Wed 22-Jan-14 19:57:09

Someone who is able to carry out a capacity test - Memory Clinic, SW or a GP will all be able to do it.

CocktailQueen Wed 22-Jan-14 21:13:14

Thanks smile

pippop1 Fri 24-Jan-14 01:00:17

My MIL too hates the carers, although she doesn't realise that they come 3 times a day. She sometimes doesn't allow them to make her any food - sits in front of the fridge and says no.

She has a keysafe so that they can get in and check she is OK as she would never open the door to them at all. Definitely worth getting one if you don't have one.

We usually blame the Dr for everything and are planning to say that the Dr wants her to have some convalescence (nice old-fashioned word) until she feels a bit better when we attempt to get her into a care home. She refused respite or even looking around a care home over a year ago and at that time was deemed to have capacity to make that decision.

Sadly things have deteriorated and she is slightly more compliant and slightly less cross about our "interference" with every aspect of her life, or maybe we are just more accomplished liars?

We often tell her things are free so we tell her that the kind Government sends a chiropodist to your house to cut your toe nails for free if you are over 80. If you say no on any occasion they never ever come again. (It costs £42 actually). She was refusing to have this done and we had to pay for the appointment so we made this up. It really works and she thinks the Government are nice.

pudcat Fri 24-Jan-14 07:47:08

When will that time come?
Sometimes they never understand that carers are there to help them. Even now my Mum in a nursing home will have days when she will not let the carers wash her, refuses food, drink and meds.
Sometimes I am sorry to say a solution is reached if a person with dementia becomes ill and has to go in hospital. Sounds awful but is often a blessing in disguise as the appropriate care is put into place.

Needmoresleep Fri 24-Jan-14 09:23:23

I love it pippop. I got a domiciliary optician in who told her what the glasses would cost. Obviously my mother then claimed she didn't need them. The firm were very apologetic. It must be standard practice for relatives to ask them not to divulge costs. Luckily by the time they came to fit them she had forgotten!

"The Doctor says" is also used here a lot, on top of "if you dont do this you wont be able to stay here".

I had a good chat with the people where she is. They agree with the idea of booking extra carer time to ensure that there is a weekly shower, but suggest I then leave it to carers. I think they were shocked at how aggressive my mother was to me. However I suspect I and my brother are the only ones with sufficient leverage to get her to comply. He is probably too high up on his pedestal to get involved with such a mundane, but crucial, issue. My advantage is that my mother has never liked me much, and has always been happy to articulate this is in quite a direct fashion. I think she has always assumed that when the time came, it would be my brother who was there for her. (I always got on far better with my dad, which I suspect was part of the problem.) DB is clearly not there, and I think she is genuinely worried that I might walk if she pushes me too far, or does not comply when I insist.

My instinct therefore is that I need to get her to accept incremental increases in care now, so that in the future, including in a CH, she is used to complying, even if in the short term she is very resistant. Otherwise the problem will just go on and on, and she will be the one who loses out. However as I write this a shadow from some flying pigs flit across my keyboard.

What joy. The only silver lining is that the roof has failed on one of her rental properties. So I will have somewhere to stay, albeit a bit damp, whilst dealing with contractors and overseeing carers. I had thought that once she was in a CH things would get easier, but suspect pudcat is right.

pudcat Fri 24-Jan-14 12:49:18

I had thought that once she was in a CH things would get easier, but suspect pudcat is right.

I suppose it is easier because I am not the one now having to deal with it. The staff are very good with her and seem to have a lot of patience with her, and they say she is not the only one like this. But I must admit I sometimes feel like a parent with a naughty child if Mum is "playing up" when I visit, especially if she is saying they are trying to poison her. I think I should tell her not to say these things but the staff say leave her - they understand.

WynkenBlynkenandNod Sat 25-Jan-14 05:53:47

I have become an accomplished liar over time and the Doctor has been a lot to blame here too. She hates him now so good thing she has changed to the one that deals with the CH.

It is easier now she is in a Home, on the days I don't see her. These are increasing and I'm going longer and longer between visits as it hasn't been doing either of us any good . She starts the whole I shouldn't be in here, it's illegal, they can't keep me, an independent person said I shouldn't be here. They are poisoning me, you can't have anything in here, they steal it. Now they are telling me I have to wash my hair, well I wash my hair when I want to, and so on. After the initial few bits that needed sorting, the home haven't called me.

Needmoresleep it is very hard but it does get to the stage where you have tried everything and you kind of have to go with making the best of a bad situation. I'd listen to the staff where your Mother is. Book the Carer for bath visit then let them get on with it. The fact that they are shocked at her level of aggression to you is telling you something. You do not have to be subjected to this even though you are Attorney. It sounds as if the staff where she is could do with speaking to your Brother and trying to enlist his help, explaining that your Mother is subjecting you to unacceptable levels of aggression.

Ultimately your Mother may lose out, but if that happens, it is not your fault. Dementia and the breakdown of smeone's personality is not something you can control. My Mother has certainly lost out. She was getting very snippy with the CH recently and one of the managers pointed out gently but firmly that she had her chance at home with the carers but blew it, that they are now trying to do their job and it is no good taking it out on them.

Hard for her to hear but very true. You have a life and children. All you can do is arrange the care for the bath etc. if she won't accept it and ultimately ends up in a CH before you had hoped then that is not your fault. You don't need to be a verbal punchbag. You can still carry out your Attorney reconsibities without this. Absolutely no one will think the worse of you for not accepting verbal abuse and aggression from her and no one expects you to. I know without a shadow of a doubt that your Mother's care team will tell you the same as they are lovely caring people who wouldn't want you to go through this.

As I say to DH frequently, the only winner in these situations is the Dementia.

DowntonTrout Sat 25-Jan-14 07:39:43

wynken is spot on.

Dementia is the thief of people.

It steals the person, their independence, their relationships, their understanding, their memory and ultimately, their life.

Sometimes none of the options you have are good. It's a case of picking the best of those options, but it may be that your MIL will not be happy, whatever you do, because the dementia takes all rationality as well. If you can try and ensure safety, food and personal care you will have achieved a lot. In the end, we failed in all three as even with the best of care, what mum still had was determination, and no one could force her to do anything.

What you need to know, is that there may be no "breakthrough" where your MIL suddenly willingly accepts care. She may accept some eventually or she might constantly fight against it. That is the nature of dementia.

Needmoresleep Sat 25-Jan-14 09:51:02

Some progress on my side. Care agency is very good. A local firm run by a well respected and experienced care professional. My mother is in the very lucky position where she can afford any care that is needed. (And it is still really hard, even without having to lobby SS for each and every incremental increase in care.) There may be an element of them interested in having a good customer continuing being cared for at home, though I think they would be good anyway.

Anyway they have a couple of carers with a track record of being good persuaders. One apparently recently got another client washing, who had not washed for months. They will review their schedule and identify a time which will suit my mum and when they can have the right carer.

In the meantime I have had a good conversation with my mum. One problem is she doesn't really understand how her boiler works so turns it off at the power switch. If cold (and the ambient temperature from the heating in other flats is high) she uses an electric heater. (One which glows - not a bar one!) However this means she never has hot water. She is happy, she says, for a carer to come in for her to have a weekly bath to sort out hot water (combi) and for safety. (When on her own she once got stuck in the bath and thought she would die, which along with not being able to work a boiler seems to have sparked the problem off.) So perhaps the way through. The approach can be that the carer is there to help her with things like getting hot water and looking out for her safety, with the assumption that washing is something she would automatically do.

WBN its hard. Like your brother, mine is unlikely to accept my mother going into a home. He has his own form of denial, and fought hard for three long years against any form of intervention. He found her fall and later confusion very difficult, but now she is stable and appears much better, he seems to have been able to reestablish his close relationship. (Though again mainly over the phone rather than in the form of visits.) My mother has to some extent returned to seeing him and his wife as her protectors.

Its difficult. In a brief meeting my mother seems fine. The golf club (there you go - bridge at the golf club) had not spotted a problem, and there is now relatively little repetition in her conversation. However in recent weeks I have become aware of her memory declining still further, with new problems surfacing.

My brother is one of those seriously successful people who is used to efficiently delegating problems. My mother's care is just another thing he has delegated and he will expect me to deliver competently. He will not want to know the details, or the problems, no different from his expectations of his staff in a work context. If I were to move her to a home against her will and at a point which my brother felt was premature, he like your brother would probably want to take steps to protect my mother.

Its fine. I just need to pull out all the stops at every stage. Something I would want to do anyway. My mother might get aggressive with me but for the vast majority of the time she is very very happy. If she goes to a CH prematurely she would not be particularly happy, and would continue to be aggressive to anyone who she thought was curtailing her freedom. Though it is difficult when I see her, overall I prefer things the way they are, and as long as I am not too tired, I can let things wash over me. (Last time involved crashes on the motorway both going and coming back!) The current game plan is to work with both the management and the care agency. I have started copying my brother in, allowing him to contribute to emerging plans - though he won't, but also so he is up to speed when my mother starts complaining. Joining it all up means that carers are also supported, when my mother complains about them.

Lets see. I see getting her to accept this additional level of care as crucial, if I am to be able to continue to ramp up the care in her current setting. The aim then would be to only transfer her to a CH when for all intents and purposes it is no different to the life she is then living.

Downton, all too true. How are things going?

DowntonTrout Sat 25-Jan-14 10:48:14

The cremation service plans are coming together, though I still have no idea what we can do afterwards as it will still only be 10.30 in the morning and there will only be a few of us. Just enough though, with a couple of not so close family, planning to travel some distance, that I don't really want to get into catering for it at home. Not enough though, to fill a room.

WynkenBlynkenandNod Sat 25-Jan-14 13:40:30

Downton, I have German relatives and have been it my Granddad's and Aunt's funerals over there. They seem to be into funeral breakfasts in a cafe with a continental style breakfast thing going on which worked well with either a small or large group in a cafe. I know when the time comes there won't be many people there for my Mother so I might do something like that.

That's good progress Needmoresleep, I am pleased. Mine thought it was ridiculous the SW had arranged someone to help he with washing and was against it from the beginning. She could work the boiler and had a very easy walk in shower so there was no leverage in that way. She didn't respond to there will be problems if the SW thinks you aren't coping either. It was OK getting the carers in at the start as she knew she couldn't do her surgical stockings so in her case that was the in. To this day she doesn't think she needs much help other than someone to do her legs and a cleaner.

She is very different to your Mum though and didn't go out and wasn't happy in her house towards the end though claims she was. Actually she didn't like it when she moved in for years either if truth be told as she doesn't like a lot. I can see why you want your Mum to stay there as long as possible but please do take care of yourself and hide behind the professionals when you need to . It is only when you don't have the stress anymore that you realise how emotionally draining it can be. Given how your Brother is, very sensible to copy him in on everything.

As time has gone on, more is coming out about the disaster that the live in carers were. He got a phone call 4am UK time one night from Mum under the bed covers 'it's me, I'm under the covers, she's (the carer) outside my room waiting for me' .The neighbours were telling me about how the carers would tell them she was locking them in etc. We're still waiting for the return of the prodigal son, April now apparently.. Now we both have realised the extent my Mother played us off against each other things are easier.

I guess Needsmoresleep's Mum and mine are two examples of how some people will accept Carers in time, others just won't. Mine doesn't even think her diagnosis is right currently.

BeckAndCall Mon 27-Jan-14 11:37:21

Oh gosh, there are so many of us in the same boat on these boards it makes me feel better just dropping in,especially after a night like last night.

My suggestion OP is that you suggest to your MIL goes f or respite care - tell her it's for2 weeks while you sort something out ( make something up - need to get the house treatedforwoodworm, going to visit relatives somewhere, or 'the doctor says' she has to go , or you're having surgery and you need your DH at home so he couldn't go over). Find somewhere where she may be able to stay longer if she likes it.

I'm speaking from experience you gather. My MIL was going downhill rapidly due because of her sister being in hospital ( they lived together). When sister died, we moved MIl into a home on the same day, saying it would be for a couple of weeks while we 'sorted everything out'. That was in November and she doesn't want to go home at all now - it took about a month for her to suggest that herself.

It has left her more confused though - but that may have been coming anyway. She doesn't always remember who people are, thinks she's at the seaside, says there were no meals today because no nurses came to work etc. and last night she rang us twice in the night as she said everything was dark and she didn't know where everyone was.

But the care home did. Say this level of confusion is quite typical for the first six months, so we can still be hopeful she may get a bit better in time.

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