Mother in law refusing nursing home

[DM1]

Sirena,
I am inclined to agree with you, too many assessment days can cause a lot of stress for everyone, a single assessment may be the right thing for a lot of people, you did well just to have the one. My MIL had to sit in the lounge all day (3 trial days) which was quite busy and she is used to only one or two people around which just added more stress. It wasn't a true trial as if she had her own room she could have sat in there quietly and come out later on her own terms which may have been slightly less stressful for her or maybe not but we would have seen a clearer picture of how much she settled in the day.
Other people have suggested like yourself that the most modern home isn't always the best so I won't be too fussy about the décor when looking. My MIL's dementia is quite bad really but her antenna is all there and we wouldn't get away with telling her she is going on 'a short break' or 'going on holiday'. The only logical thing to tell her is that we are going on holiday and can't get extra carers in to look after her and she needs to go into respite. The truth is we cancelled our holiday last week when we found out she had gone 'walkabout' on her own outside which was a first. We realised it would not be safe to go on holiday without someone around all the time. This led me to join this very nice forum and ask for some advice. My MIL had 3 hours a day private funded care in but we have increased it this last month to 5-7 hours a day and we also go in or take her out for 2-4 hours a day depending on how she is. After all this she still says she sees 'no-one', she just can't remember all the people have been in. Our main priority is to get her in somewhere where she will be safe. Thanks for you input.

 

[DM1]

Ducky,
I feel a bit more in control and only one day after joining this forum. I think when I get hold of SS as you mentioned I will feel we are moving forward. We did have an emergency visit to the Dr on Friday to say that we are desperate for some help, he googled a few nursing homes and gave us details and prescribed a sleeping tablet for her so she wouldn't be 'roaming' at night. He never mentioned SS.

 

[Shedrech]

hi @DM1
these sites may be of help
https://www.carehome.co.uk
https://www.cqc.org.uk/what-we-do/services-we-regulate/find-care-home
I appreciate that a sleepong pill may help, just a bit concerned that if your m-i-l is on her own and does wake, this may increse the risk of a fall

 

[vldt56]

I wish I'd found this site earlier! This thread is very pertinent for us. We live with my partner's 93 yr old father who is well down the Alzheimer's road. I've become the primary carer, we've been having a carer come in a lunchtimes and on Friday & Saturday evenings, but I've been pushed to my absolute limit and 2 weeks ago I announced that 'either he goes or I go.' I'm guessing we should have sought more support from somewhere but didn't/don't know where. The situation just develops, we handle it, until I found myself going pop. And I have an operation on Friday and need 2-4 weeks recovery, and my partner and 12yr old son are going on holiday in 3 weeks, me too if I'm up to it, so we found a care home for respite initially. He;s been there, we talked about it this morning, how he has to go stay safe while we are all away etc, he said 'All things must come to an end' and seemed accepting, but right now he's very distressed and alarmed about the whole thing. I feel awful, but at the same time really need the space. If he refuses to get out of the car tomorrow, I don't quite know what we will do. Any advice gratefully received.

 

[canary]

If he refuses to get out of the car tomorrow, I don't quite know what we will do.

Phone the care home tomorrow before you set off to warn them. They will probably be able to help coax him out if there are problems.

 

[Shedrech]

hi @vldt56
welcome to TP, glad you have found us
personally, I wouldn't talk with your partner's father about the respite - get his things ready on the quiet and put them in the car without him knowing - then just act as though it's a normal day and you are just going out for a coffee
good idea to call the home beforehand, and even let them know when you will be arriving
put on a fixed smile and air of calm as though nothing new is happening
be positive about everything, so he gets positive vibes from you
don't make a fuss when you are leaving, maybe even simply pop to the loo or out for some shopping ...... and let the staff settle him in
if he does begin to question do not start explaining or discussing or arguing, just fix on a positive phrase you can repeat eg you'll enjoy your break here and change the subject, distract, introduce a member of staff, pop to the loo ...
and have something nice for yourselves to do afterwatds to stop you fixating on haing left him ( in capable hands, so no need to worry really)
best wishes

 

[DM1]

Shedrech,
Thanks for this - I honestly don't think it will be finding the right home nor getting her to go, it will be getting her to stay there. We are very concerned about her going out on her own, the pills are very short term, we put her to bed later than usual and seems to work.
https://www.carehome.co.uk
https://www.cqc.org.uk/what-we-do/services-we-regulate/find-care-home
I appreciate that a sleepong pill may help, just a bit concerned that if your m-i-l is on her own and does wake, this may increse the risk of a fall[/QUOTE]

 

[DM1]

The situation just develops, we handle it, until I found myself going pop.
Couldn't put it better myself!
Hi Vidt,
My heart goes out to your family. We felt we were dealing quite well with everything and like you it just became overwhelming almost overnight. This forum is really where I got my strength back, knowing we are not alone. I take all the advice on board, I weight it all up and if it is relevant to my MIL I draw on it. Everyone has their limits and the one consistent thing I have been told outside this forum is 'look after yourselves first' when you put this in place you know what you need to do and you do it. You have a young child and he needs his mum and dad to be well to look after him that is paramount. Take a few deep breaths - it really works - and then do what you have to do.

We have the same talk with MIL every day and tell her she needs to be safe, needs someone there all the time. She denies that she went out on her own or that she gets up at night and thinks it is morning. We needed to tell her this, not to upset her but to emphasise how serious her situation is and she needs to be in a safe place. She agrees and then a few minutes later says we are 'throwing her out', she feels like 'nothing', it is so hard. We know from the day trial at a care home that she will go there but won't let us leave her. Best advice I have had is to get on to SS on board and inform them what you are doing. My husband is speaking to them as I type, we need to get her into care asap. We cancelled our holiday as it was this week, don't cancel yours!

 

[Sirena]

People with dementia will often not accept they need help, and are unlikely to remember what you've said, so telling them they need to be safe may have little effect, you'll just go round in circles. My mother lives in 'now' and doesn't remember what happened five minutes ago.

I hope social services are helpful (I didn't find they were, but others have had better experiences). SS will want to determine whether she has capacity to make her own decisions. If they believe she does, she will be able to choose where she lives. They will only recommend she moves to a care home if they don't think she has capacity to make the decision and is at risk from staying where she is, they aim to keep the person at home if possible.

 

[Helly68]

In the early stages, if your relative has difficulty settling, a good care home will work with you, using distraction, activities etc to help keep agitation at bay. We were lucky that my Mother's move to a care home was gradual - she visited during the day for about six months before moving full time and she has settles in very well. We could not have managed her complex needs at home and she benefits from being part of a community. When I visited at first, I always tried to leave at lunchtime, so she had something to do to distract form y departure. After a while she didn't need that. Via social services you may also be able to get a medical assessment to see if her steep decline may have a medical cause - e.g. infection etc

 

[karaokePete]

Hello @DM1, after reading this thread I’m struck by the fact that you are trying to explain the need for safety to your MiL. This won’t work for her because of reduced cognitive skills like logical reasoning and memory. It will only be a source of angst to you because you will feel like you are losing the battle. I know because I’ve been there with my wife. There’s a great thread about communication with a lot of tips and you can find it by way of this link https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

I find it’s best to avoid the battle and just get on with what needs to be done - that works for me anyway!

When it comes to a CH, I was doing a bit of reading this morning that led me to believe that it’s wrong to tell the person it’s for a short while if it isn’t as that is one of the things that can lead to the repeated requests to go home. It’s often quoted that a person with dementia can lose communication skills so it’s important to get in touch with what they are feeling. I suppose it’s possible that when we say it’s for a short while that creates a feeling associated with that ‘reality’ and the feeling is what’s remembered and prompts the question. When leaving the CH some wait for a distraction like a cup of tea or lunch and walk out without saying anything. Some also leave things like coats etc., outside so that the leaving isn’t obvious.

Good luck.

 

[Witzend]

People with dementia will often not accept they need help, and are unlikely to remember what you've said, so telling them they need to be safe may have little effect, you'll just go round in circles. My mother lives in 'now' and doesn't remember what happened five minutes ago.

I hope social services are helpful (I didn't find they were, but others have had better experiences). SS will want to determine whether she has capacity to make her own decisions. If they believe she does, she will be able to choose where she lives. They will only recommend she moves to a care home if they don't think she has capacity to make the decision and is at risk from staying where she is, they aim to keep the person at home if possible.

That's all very well, but people with dementia will hardly ever say they're willing to move to a care home. Frequently they have zero insight into their own condition or their own needs. Yet many may be able to put on a good temporary front for a social worker who doesn't know them.
What if they are living with relatives who are worn out with trying to cope?
What about their needs?


. ,

 

[DM1]

Hi Pete, (just copied it over - thank you for this, I love it)
DON'T
Don’t reason.
Don’t argue.
Don’t confront.
Don’t remind them they forget.
Don’t question recent memory.
Don’t take it personally.

Don'ts - I couldn't agree more. I did all of these early on and learnt 'the hard way'.
You don't get any training to deal with Alzheimer's do you?
DO
Give short, one sentence explanations.
Allow plenty of time for comprehension, then triple it.
Repeat instructions or sentences exactly the same way.
Eliminate 'but' from your vocabulary; substitute 'nevertheless.'
Avoid insistence. Try again later
Agree with them or distract them to a different subject or activity
Accept blame when something’s wrong (even if it’s fantasy).
Leave the room, if necessary, to avoid confrontations.
Respond to feelings rather than words
Be patient and cheerful and reassuring. Do go with the flow.
Practice 100% forgiveness. Memory loss progresses daily.
My appeal to you: Please.elevate your level of generosity and graciousness.

The Do's are a 'work in progress' with me and again I have learnt the 'hard way', some of them are 'common sense' too. I don't like to see her upset and can calm her down with reassurance and when I see her eyes light up I know that she feels secure.

When we told her that it wasn't safe for her to live on her own and she was going into a nursing home where she would never be on her own again and wouldn't be afraid and needed to be safe she seemed to accept it and said she hates living on her own and was happy to tell her daughter she was going. We were delighted, she told me what she wanted to take with her and I packed everything in front of her and all was well - until we mentioned later in the day that she was going to a nursing home and it was a different story, she hadn't remembered any conversation about a nursing home and was really upset.

We just have to bite the bullet and get her in as kindly as we can. I also agree with what you have read and we aren't telling her that she isn't coming home, we just aren't saying anything on the matter if we can help it. I think it is all 'horses for courses' and each individual is different and has to deal with their situation in the way they think best. Will leave when there is a distraction as you mentioned.

Thank you for this very helpful information, you have a better understanding of Alzheimer's that I do and I think it is possibly because my MIL has recently declined rapidly and I am still treating her as I did at an earlier stage and this just isn't working anymore. She was a very clever woman and sometimes asks me what is wrong with her and why can't she think anymore. It breaks my heart.

 

[DM1]

Hi Witzend,
Frequently they have zero insight into their own condition or their own needs. Yet many may be able to put on a good temporary front for a social worker who doesn't know them.

I honestly couldn't believe it when my MIL went to the Doctor and gave a really good account of herself. It was short lived but it was there, I thought it was only her I didn't know other's were able to do the same. The dignity is still there on some level, how is she capable of putting up this front, even for a short time.

My MIL started asking me 'what will I do now' and I honestly thought she meant 'any suggestions what I should do now' - I didn't realise that she really didn't know what to do, I think her mind has started to go blank. She really needed me to reassure her and tell her to sit down and have a rest then to get ready for bed. Her mind cleared a bit later but it is all the progression of the Alzheimer's and it scares her - and me!

I don't think anyone who hasn't dealt with Alzheimer's or Dementia has any idea of the effect it has on the people who look after them. I didn't, until now. Thankyou for you comment.

 

[karaokePete]

When it comes to asking what's wrong be very wary. My wife is also a very clever woman so will persist with this same question. In the early days I sometimes felt as if painted into a corner and just blurted out "well, you have suffered brain damage in areas of your brain that make it impossible for you to have short term memory and a normal level cognitive function". That was then met with a scolding for saying such things and an expression of the wish to be dead.

We have to be very careful. We can't change the situations that come at us - we can only modify our reactions.

 

[canary]

We know from the day trial at a care home that she will go there but won't let us leave her.

I honestly wouldnt keep trying to explain it to your MIL, it is getting you nowhere and is just reinforcing in her mind that she doesnt want to go.

If you choose the right place there will be carers who know how to deal with this oh-so-common problem. When you leave dont say goodbye to her (sounds harsh, but it will be a trigger point for her) - make an excuse that you need the loo or something. I also used to time my visits to mum so that I could leave when she was distracted by lunch. I would recommend that you leave coats and bags in the car so there is no visual cue that you are leaving. There are lots of tips for when you take her to her care home, so dont worry about that.

You have to handle it in the way that works for you. Some people are fine with distraction - my mum was usually, but when she really, really wanted to know the answer to something she was like a dog with a bone and wouldnt let it go untill she had an answer. I hated telling love lies to mum as I had been brought up to tell the truth, but if nothing else works and love lies do, then that is the way to go. It does depend on how good their memory is, though. Mum had very little short-term memory and love lies worked for her, but OH does not have problems with short-term memory, so he can still remember what I have said and i cant get away with it. I told mum that she was in her care home "convalescing" and although I did have to say this each time I saw her for a few weeks until she had settled, she was happy with this explanation and didnt keep going on about it. Im sure, though that if I tried the same thing with OH he wouldnt let it rest and would keep going on about it.

You have to do what you have to do.

 

[karaokePete]

This short lived 'show of normality' is 'Hostess' mode. It requires a great deal of effort and can't be maintained long term. The effort required means that a carer will often get it in the neck later when the tiredness makes the person cranky. Another thing to be wary about!

It's because this mode exists that I always make lists of how my wife is doing and take these to consultations.

 

[DM1]

Sirena,
Yes of course you are right - found out the hard way; as usual.

Have contacted SS and put the cogs in motion.

 

[DM1]

We have to be very careful. We can't change the situations that come at us - we can only modify our reactions. -

KaroakePete,

How true but wouldn't it be good if we were able to know the right reaction the first time, some training would really have helped me earlier on as I was just going on 'common sense' and with Alzheimer's 'common sense' doesn't always apply!

I always had a 'gut' feeling not to mention her Dementia/Alzheimer's to her just as I don't think I would like anyone talking to me if I had it. When she asks what is wrong with her we have always said to her 'you have a memory problem but you are managing very well and give her lots of encouragement and tell her all the things going on in her life and it seems to reassure her although she is asking it more and more now as she is getting worse, she says her 'brain is muddled and she can't think and what is wrong with her'.

 

[DM1]

Helly68
Good point re medical assessment, she just seems to have had a really rapid decline, I first thought it was a urine infection but it was clear. Will look into full medical assessment. Thankyou.