Mum refusing to move into care home

All about caring
1

The time has come for my 93 year old fiercely independent mum to be cared for in a home. My mum refuses and says I am trying to get rid of her. We are at a stale mate now and I really dont know what to do.

Mum has cataracts, is very hard of hearing, has been housebound for 3 years and is very frail (she ‘manages’ with a walker. She has private carers for an hour every morning to make her breakfast, give her medication and tidy up.

Recently (since January) my mum has started calling me or my sister at the same time every afternoon saying either:
the tv is not working can I go over and sort it,
the fire is not working can I go over and put it on
the microwave is not working can i go over and put it on
she pulls the plug out of the socket for the kettle and says her hands cant grip to put it back in so can I go over
She said a man was in her house and her keys indoor went missing (she has a key safe outside for the carers). I changed the locks to be on the safe side and her keys then appeared from nowhere …

My sister and I both work but have been going over each day to ‘fix’ these things. We have noticed though that the first thing she says when we walk in is ‘make me a drink and something to eat’. It looks like she has stopped getting out of her chair and making herself a drink or food and is waiting for my sister or I to do it when we go and ‘fix’ whatever that days problem is.

One day she said she couldnt see at all so could i go over. my sister called the doctor who sent an ambulance as he thought it was a stroke! Mum should have received an oscar for her performance for them - she was singing, putting her legs up, saying she was well and she could see. The next day I had the phone call saying she cant see can I go over. The ambulance people and the doctor have tried telling her she cant manage on her own but she ‘forgets’ these conversations.

We have had mum assessed and she does not have dementia, although she is very forgetful, asks the same things over again and we find things in odd places which she blames on someone else. She doesnt get dressed in the morning and wears the same nightie for over a week. She wont let anyone take it off and always says she will have a strip wash later. She has had blood tests and they are as expected for someone her age - low kidney function, heart function, needs iron etc.

We have been telling her she needs extra care now and we are asking her to go and spend a couple of weeks in a home to ‘build her strength’ and see how she likes it. She is accusing us of trying to get rid of her, says she never bothers us and is managing. I tell her she is managing because we are enabling her to manage but she changes the subject. I am telling her she will end up in hospital soon to try and get her to agree to leave but its not working.

She will be self funding and has approx £170,000 in savings and her house is worth £100,000 so social services wont be involved. She is trying to give us money but I tell her its too late now, she has to keep it for her care. She cant get out the house - shes too frail to manage the steps and has refused outings etc and has done for 3 years she ‘doesnt want neighbours to see her’. She is massively stubborn. My sister and I are going to stop running to her each day she rings but it seems really cruel. Is this the only way we can get her to see that a care home really is the best option for her. Its becoming unmanageable now as my sister lives in another county and I have had health issues myself this past year and am still recovering and we both work full time.

Sorry this is very long winded but any advice would be really appreciated. I have found a lovely care home for her but she just wont budge! Thank you.

2

Hi Karen,
as your Mum has capacity, she cannot be made to go into a home; however, it does sound like she needs more care visits.The care workers could prepare her one hot meal and leave a cold lunch/supper and drinks by her chair or she could have a hot meal delivered.

Is she sleeping in her chair? Is she taking herself to the toilet ok?

Unfortunately, until something happens (e.g. she falls) she will probably not agree to the whole care home thing, even though you have found a lovely one close by.

Melly1

3

Thank you for replying. The carers do leave food out for her but she wont leave the chair to go into the kitchen to put it in the oven or microwave (They will open a tin of soup or leave a dinner out every day). She has snacks - crisps, chocolate, cheese twists, sweets etc all next to her on the arm of her chair.

She is using a commode which has been put in the corner of her living room and she has stopped using the upstairs toilet as she says she cant get to it quickly enough.

Some days she will sleep downstairs but will not admit it. We know because the carers let me know if her bed is made and the commode in the bedroom has not been used.

Just had a phone call from her asking me to go over as she cant find her phone! Said she is hungry! Explained I am at work (currently on lunch break) so cant go and she said she will ring my sister (shes also at work). Have asked mum to try and make something to eat and she said she will. I know she wont and I will get another phone call shortly.

She was only tested last month for dementia and she put on a great show for everyone.

4

Who is doing these dementia tests?
My lovely sister in law developed dementia, like her mum (best mum in law in the world!) but it took a long time and a number of visits to the doctor before the doctor accepted there was an issue.

I suspected my SIL had a problem but at the time I was very ill, and my mum was dying.
She was always ultra organised, used to run a cub pack, worked as a civilian for the police preparing statements for court. She loved doing family parties when there was usually a table groaning under the weight of some delicious home made food.
One day she was running very late, and I asked if there was anything I could help with. Her hands were fluttering over the food she was preparing, and suddenly I could remember her mum making exactly the same hand movements.
We took it in turns to do the family get together at Christmas and Easter. The year it was her turn we waited and waited to find out when she wanted us to come, but the invitation never came. We all knew that she was very ill then.
Finally, she kept going to the shops and forgetting where she lived. Ultimately she stayed in a secure home for her last couple of years.

Family know the person concerned and what is normal for one person is not for another.

With regard to the phone, you have to ignore he calls I’m afraid, but keep a log of how many calls there are, and what she wants etc.
Keep in touch with the carers manager.
There’s no point in giving her food she never eats. My own mum survived for a very long time mainly on Mr. Kipling cakes. If mum wants nibbly bits, let her nibble. As she is so inactive, she won’t need much proper food.

I have read very good explanations of food and the elderly, but I found the articles when I googled “Signs of Dying”. I’m NOT saying I think your mum is dying, but I do think her body may not be working as well as it used to, and her body knows what it can and cannot cope with.

5

You say she has been assessed and does not have dementia. Who assessed her? A proper assessment on my Mum took about an hour and a half and was completed by a psychologist.

It does sound to me like she has dementia.

If she is adamant that she doesn’t want to go into a care home and she can afford it, then I would just go ahead and get extra carers in.

6

Thank you for replying bowlingbun and I am sorry to hear about your Mil and Sil. Its awful isnt it. I think you are right and my mum could be nearing the end of her life which is why I dont want her to be alone as it were.

Thank you for replying Penny. Mums doctor arranged the assessment. Yes it took well over an hour and we were told that mum does have old ages issues but they will not diagnose dementia unless she goes to hospital for a scan. Which they knew she wouldnt.

We received a letter 2 days after the assessment from social services (they were not involved though so was surprised by their letter) asking if we wanted them to take over mums private care!

I do think mum has been refused a dementia diagnosis as I believe that a dementia diagnosis would qualify her for free care. I could be wrong in my assumption though.

Mum has just called me again saying she wants me to go over and make her something to eat. She has forgot about her earlier phone call. She puts on such a show when speaking to a doctor or people asking about how she cares for herself - she almost has me fooled!

7

Hi Karen,

Unfortunately having dementia does not guarantee free care. Once a person has severe needs they may qualify for Continuing Health Care (CHC) - but dementia alone doesn’t automatically qualify someone for this. If you google CHC you will see the see how it is assessed and the qualifying criteria.

Melly1

8

Mum should now be entitled to Attendance Allowance. Given her memory issues she might also be entitled to EXEMPTION from Council Tax due to “severe mental impairment”. Easy to claim.
Do you have Power of Attorney? If not, be sure to put this at the TOP of your priority list, once she is diagnosed formally with dementia it’s going to be almost impossible to arrange.
Then it’s much more difficult to act for her, as you have to go through the Office of Public Guardian.

9

Yes you are wrong in your assumption. A diagnosis of dementia does definitely NOT get you free care.

10

Hello Karen. Mum can certainly put up an act and her memory is at her convenience! You can’t force her to go into a care home unless she is proven unfit to live elsewhere.

For the present the best I can suggest is take up the offer of more-frequent visits from carers and reduce your availabity.

11

Hello Karen. I don’t know if you found a resolution for yourself, your sister and your mum but in case you didn’t I’ll tell you of my experience and how, in the end, I had to deal with it. My mother who is now 102 refused and still refuses to go into any home type environment. She is stubborn like your mum but much more so and very nasty with it. She has no mobility to speak of (she can only just stand and walk a few feet now) and is incontinent because of this. She refuses to have a commode at all and prefers to sit in her waste until someone will clean her up. She too was assessed several times and always manages to “pull it out of the bag” when someone is there only to revert to paranoia, forgetting etc. straight afterwards. The only thing any professional will say is that due to her age she probably has age related cognitive impairment. I know for a fact that this is not correct but social services, medical staff etc. all say she has capacity to choose where she lives and that is it. She is also deaf and cannot hear on the phone. Believe me she led me down some very dark paths mentally until I decided that it was not worth continuing with life. I tried absolutely everything including having no contact at all but nothing made any difference. I have been having therapy for the past 12 months and this has helped. I limit myself to 2 calls a week and help with admin, finance and shopping. She does have carers 5 times a day but is so unpleasant to them that the care agency now only have 6 or so who will go to her. What I want to say is yes, initially you will feel guilty, cruel and all of those things but you have to think of yourself. My mother won’t co-operate or compromise at all and just refuses to do anything positive so I now just say to myself that is your choice, I feel I am doing the best that I can for you and that is my limit. Over time it does get easier although it always makes me sad to see other daughters with their elderly mothers who seem to be able to agree and compromise. Take care of yourself, if you feel you are doing enough within the confines of your life then that really is enough. As I say I know your post was a while ago so I sincerely hope things are now sorted for you, your sister and your mum.