Mother in law refusing nursing home

DM1

Registered User
Jul 28, 2018
38
0
Hi I have never posted anything on line before but feeling a bit desperate for advice. My mother-in-law is in her early 90's and has Alzheimer's, quite advanced I assume but am only going on what I read online. She lives in sheltered accommodation and has lots of carers in during the day as well as myself and my husband. She says she hates living there and hates being on her own. If she is left alone for more than 15 minutes she starts phoning us to ask when are we coming and then on a 5 minute basis but never remembers that she has phoned or that she had had maybe 5 hours of carers in already that day. She can no longer turn on the TV, or the radio and won't let anyone turn them on, I think it is because she gets frightened as she knows she can't turn them off. She has been found wandering outside recently and also gets up during the night and thinks it is morning. She totally denies either and refuses to go into a home, she thinks it is our duty to look after her she accuses my husband of
'throwing her out' and she feels like 'nothing',I am sure these thoughts are very real to her but she just won't understand that we have her best interest at heart and she just isn't safe any longer in her home.
She went to a care home for a day and behaved so badly they said they wouldn't accept her. They said she needed a 'one to one' and recommended a nursing home where she would get more individual attention. We have now found one but she is refusing to go. We just want her looked after and to be safe and we are getting on ourselves and can't look after her any more and we are both worn out. Any advise welcome.
 

nellbelles

Volunteer Host
Nov 6, 2008
9,842
0
leicester
Hello @DM1 welcome to TP

That sounds a very difficult position to be in, can I ask how long it is since she had a SS needs assessment?
Maybe time for a new one?
It sounds like the time is very close to her needing full time care and if she really will need one to one care I’m sure you will need SS on board.
If you need to talk to someone I’ve attached the link to the Alzheimer’s Society help line.
If you’d like to talk to someone, you can call our helpline on 0300 222 1122. It's open 9am - 8pm Monday to Wednesday, 9am - 5pm on Thursday and Friday, 10am - 4pm on Saturday and Sunday. You can also email them athelpline@alzheimers.org.uk.
 

DM1

Registered User
Jul 28, 2018
38
0
Helen, Thankyou first bit of help we have had in 4 years (since last assessment). Didn't even think we could get another one just fire fighting through every day and unable to think logically. Will phone helpline tomorrow and SS on Monday.

An ounce of help is worth a ton of sympathy.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
In addition to contacting SS for an up to date needs assessment, I would start looking at care homes. Her being outside wandering puts her at risk.

Not all care homes are the same - many of them are unable to cope with typical dementia symptoms like wandering, getting up at night and resisting personal care (even the ones who say they specialise in dementia :rolleyes:), so do ask about what they would not be able to cope with and ask them how they would deal with your mums symptoms. Ideally you would want somewhere that she could live until the end, so expect to see people at all stages of dementia - if they all seem at about your mums level then this probably means that within a fairly short time your mum wold be asked to leave.

Also ask whether they accept Local Authority funding. Please be very careful about paying top-up fees (payment above the amount that the LA will be willing to pay is funded by family). Inexpensive homes are not always the worst - mum was in a cheap care home that was very shabby, but had a lovely homely atmosphere and the carers were wonderful and looked after her right up to the end.
 

DM1

Registered User
Jul 28, 2018
38
0
Canary,
Thank you, great advice. We are so emotionally involved we can't think straight and didn't really know what to do.
I just joined this site as a 'plea for help' and am so pleased I did. Will get another assessment from SS. She just deteriorated so quickly we were taken aback, she has also started hallucinating as well but
I think the 'wandering' is our biggest 'wake up' call, she needs to be safe. Will take all your advice on checking out the nursing homes and asking the right questions and not be too judgemental on the décor. She will probably need 'topup' at sometime too.
She is quite a strong person, very introverted and private and somehow I have the strongest feeling that she will never settle in a nursing home at all but I can't see any alternative.
I am so pleased to hear your mum was so well looked after to the end (RIP).
 

Kevinl

Registered User
Aug 24, 2013
6,052
0
Salford
Helen, Thankyou first bit of help we have had in 4 years (since last assessment). Didn't even think we could get another one just fire fighting through every day and unable to think logically. Will phone helpline tomorrow and SS on Monday.

An ounce of help is worth a ton of sympathy.
Hi DM, welcome to TP
my advise would be don't phone the SS, google the name of the LA followed by "vulnerable adult assessment" you should be able to request the assessment on line. Too often on here people phone the SS and if they're self funding are fobbed off, if you request an assessment then by law they have to do one, self funding or not so start a paper trail.
People can say what they like on the phone but are much more reluctant to put something in writing which "be used in evidence", the law is they have to do one, it's all set out in Section 9 of the 2014 Care Act (link below) and request an assessment for yourselves too as carers as the impact this is having on you is part of the consideration as to a care home being the best option for all concerned not just her.
As Canary says you need to find a home that take people with challenging behaviour not just says it does, there are several people in the home with my wife who've been kicked out of other homes even though those homes say they take people with dementia, they don't say "up to a point" so you need somewhere that will take and keep a wanderer.
Early days in a care home can be difficult and can cause a person to be come aggressive about being confined with strangers, I've seen it happen many times but they usually settle down and get into the routine after a few days although some do take weeks.
K


http://www.legislation.gov.uk/ukpga/2014/23/section/9/enacted
 

DM1

Registered User
Jul 28, 2018
38
0
Kevin,
Thank you so much, I will look this up now, haven't had much help at all but really need it now and all info very much appreciated.
We assumed that that we could always look after mother-in-law at her sheltered home with the help of the wonderful carers' she has. We were 'naive' to say the least, we didn't know the Alzheimer's would be so unkind to us all.
She is of a generation where she honestly believes that she should be looked after by her family and has a strong antipathy against any sort of 'home' and this is so scorched on her brain no amount of Alzheimer's will erase it. I fear she will be a 'challenging' resident wherever she goes, nonetheless we have to put her safety first (and that of others) and she needs to be cared for 24/7. I am sure that we aren't going through anything that thousand's of people haven't gone through before but it is so hard when you are dealing with someone so terribly vulnerable and you are responsible for their wellbeing.

Totally get the point regarding the challenging behaviour, need to ensure the nursing home knows what it is taking on and we will be very clear on this now that we are aware.
My mother in law did go to a care home for 3 separate trial days. The first day we made it very clear that we would both take her there and leave her in the care of the staff until 5pm when we would collect her. We said she would not be alone, there would be other people there and she would be very well looked after. We think she must have translated this as - the three of us were all going for the day and we would not be leaving her and we would all be looked after. When we left her, telling her we would be back in the evening as we had discussed apparently she went berserk and wouldn't settle for the whole day, didn't eat and harassed the staff all day to phone us to 'get her out'. The second and third subsequent trail days weren't any better, she wanted us to stay with her. The care home advised us her anxiety level was so high they couldn't have her and advised we look at nursing homes where she would get 'one to one' attention. I don't know if she would ever settle in any home but I do know that she definitely won't settle straight away and this will be the hardest, she is in her early 90's and quite frail, it will be hard.
Thanks for your help and thanks for listening, feel better to know there are nice people out there who have all got problems and are willing to share the gift of their experience.
 

Lindy50

Registered User
Dec 11, 2013
5,242
0
Cotswolds
@DM1 welcome to TP :)
I just wanted to reassure you that there is a whole system in local authorities and mental health teams, to help manage the kind of situation in which your MIL may soon find herself, ie unsafe at home and unwilling to stay in a nursing home.
Every local authority has a safeguarding officer (whose job is to do what the job title says!) as well as a team of people who can do what are called DOLS assessments (deprivation of liberty safeguards). Care homes cannot keep anyone against their will without applying for a DOLS order.
More details online or see the Alzheimer's Society fact sheet :

https://www.alzheimers.org.uk/sites...ds/deprivation_of_liberty_safeguards_dols.pdf

When you have a needs assessment do raise these issues, if the social worker does not do so.

All the best to you.

Lindy xx
 

DM1

Registered User
Jul 28, 2018
38
0
Lindy,
I am learning fast with all the very valuable replies I've had. We were really overwhelmed with the fast deterioration of my MIL's condition and looking after her took precedence to finding help. I am going to phone Alzheimer's Society today and SS tomorrow. I feel a bit more in control and my 'ducks are getting in a row'.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
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.
 

DM1

Registered User
Jul 28, 2018
38
0
Canary,
Thank you for your advise. I didn't know that people with dementia in general don't like going into a care home,
This is probably compounded by her believe that she should be looked after by her children. No matter how we package it and we get her to agree to go into care (which won't be difficult to persuade her to agree to ) it is the reality on the day it will be all 'out the window', the fear will set in, anxiety and sense of abandonment. Believe you me I am no pessimist but nothing will be acceptable to her other than her son going in with her. She thinks he is her husband at times and then remembers.She does hate change too but always has.

One of the carer's said to me - Never argue with someone with Alzheimer's as you will never win. So true, so true.
 

DM1

Registered User
Jul 28, 2018
38
0
Helen,
Ran Alzheimer's Society help line and got - 'all our lines are busy leave your number and we will get back within 48 hours'- why can't I just be put it the queue or at least promise to ring back today. Up to 48 hours is a long time when you need some help!
 

RedLou

Registered User
Jul 30, 2014
1,161
0
The other thing - nobody can take that many phone calls and remain serene - your own blood pressure pumps up and it's bad for your own health. (Been there, got the read out and doctor's lecture!) May I suggest that you turn your phone off for a set period each day (if she is having that many carer visits, she should be safe) for your own sanity?
 

Lindy50

Registered User
Dec 11, 2013
5,242
0
Cotswolds
The other thing - nobody can take that many phone calls and remain serene - your own blood pressure pumps up and it's bad for your own health. (Been there, got the read out and doctor's lecture!) May I suggest that you turn your phone off for a set period each day (if she is having that many carer visits, she should be safe) for your own sanity?

Good idea @RedLou
@DM1 I’m sorry you got that response from the helpline :( I hope you left your number?
Admiral Nurses also have a helpline I think. Sorry on phone and can’t provide link....
Thinking of you.
Lindy xx
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
the reality on the day it will be all 'out the window', the fear will set in, anxiety and sense of abandonment.
That is really, really common, but a decent care home will know how to deal with it.
Make it one of your questions to ask any prospective care home - how would they deal with it?
 

DM1

Registered User
Jul 28, 2018
38
0
She isn't allowed to phone when the carer is there although sometimes they feel it is better to let her ring than to see her so stressed. It is the in between times we get the calls - early morning, an hour after lunch, an hour before tea. Can get a lot of calls in if ringing every 5 mins, we have to answer in case she is in trouble.
 

DM1

Registered User
Jul 28, 2018
38
0
Canary,
That is what we are hoping for, we will be very candid. Thankyou.
 

DM1

Registered User
Jul 28, 2018
38
0
Helen,
I rang again and got straight through, extremely knowledgeable, supportive and kind and a push in the right direction. I did tell them that I found their phone message very unhelpful the thought of waiting 48 hours (the 'up to' didn't register) was like a 'slap in the face'. She said I am not the first person to say this and she would pass it on.
 

Sirena

Registered User
Feb 27, 2018
2,324
0
My instinct is that trial days at a care home may not always helpful (depending on the person). One care home manager asked me to bring my mother for three separate day trials, so they could be sure she would 'fit in'. This was despite the fact it would have been a 5 hour round trip - he suggested she could use a taxi each time! I did wonder how good a grip he had on the needs of a person with dementia. Apart from the logistics I knew she would find this unsettling and unhelpful, and I suspected they would jettison her if she was at all challenging, so I declined.

The care home she moved to was happy with a single assessment, they deal with all stages of dementia from early to late. The decor is shabby, but it is a lovely welcoming environment. I did not mention the move to mother in advance, she would have been very anxious about it, she had lived in her flat nearly 50 years and it was a huge change. On the day of the move we told her she was going on a short break, packed a few things for her, and took her to the care home where we had lunch together, then we left her with the carers. We took the rest of her stuff in the following week. She was unsettled for a week or two but then settled in very well and loves it. Even if she hadn't loved it, it was necessary to keep her safe. She'd been having 6 hours self-funded daily care at home but it was no longer enough as she was no longer safe to be left alone.
 

nellbelles

Volunteer Host
Nov 6, 2008
9,842
0
leicester
Helen,
I rang again and got straight through, extremely knowledgeable, supportive and kind and a push in the right direction. I did tell them that I found their phone message very unhelpful the thought of waiting 48 hours (the 'up to' didn't register) was like a 'slap in the face'. She said I am not the first person to say this and she would pass it on.

Am pleased you managed to contact the helpline, I hope the call was helpful to you
 

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