Mum is refusing help

SSpalding

Registered User
Mar 18, 2015
6
I would like some advice on a current situation with my mum, myself and my 2 sisters share caring responsibilities but we all work full time, have our own families and can't be with mum all the time she lives on her own. Mum is at the stage of not looking after herself, her dog or the house, carers are meant to come in every day and make sure she has showered, has eaten and offer to go out for a walk with her. Her answers are always yes, yes and no even though we know she hasn't showered for weeks now, and that the dog isn't getting properly walked and overfed and mum is invariably living off scotch pies and tinned soup. We have offered to get a dog walker in and to help her with cleaning but she refuses my sister seems to think if this continues it will get taken out of our hands. We would like mum to continue to stay in her own home with her dog for as long as possible but mum's refusal to accept help may mean she will be in a home sooner rather than later. Mum was officially diagnosed with Alzheimer's in October 2013 but had symptoms years before please can anyone offer any advice?
 

Angela T

Registered User
Jul 13, 2014
187
France
I'm not offering advice but everything you say about your mother echoes what we went through with my mother. She lived in a lovely flat, and could have stayed there until the end IF she had accepted help from carers.

But she refused. "Non compliant" is what the doctors, the occupational therapist, the care agency etc... all kept saying.

So we had no choice but to move her into care, so she could be properly fed and less at risk, when in fact she could have stayed in her own home, which is what she always said she wanted.

I realise that saying "I want to stay in my own home" is not enough. You have to make an effort, accept help... some people just cannot do that. I don't know if it is the illness, or temperament - or both ?
 

Witzend

Registered User
Aug 29, 2007
4,291
SW London
I realise that saying "I want to stay in my own home" is not enough. You have to make an effort, accept help... some people just cannot do that. I don't know if it is the illness, or temperament - or both ?
I think it is often because the person genuinely doesn't think there is anything wrong with them - they can't remember that they can no longer do or manage this or that. So why would they want strangers in the house? Of course innate stubbornness will also play a part, if the person has always been like that and dislikes anyone else 'taking over' or telling them what to do.
 

Bod

Registered User
Aug 30, 2013
1,212
There comes a time when you have to do what you have to do!
I fear your time has come, help will have to go in, whether she likes it or not.
Carers will have to take her wishes into account, so little may be achieved.
As family you can be more robust in achieving better care for her.
It is very important that all family members agree as to what is to be done. This will avoid conflicts between the people trying to improve the situation.
Start small and build up, Family member to take the dog for walks, till it is accepted that the dog is walked by someone other than her self, then put in a Dog walker.
(Use the line from Driving Miss Daisy, "you are employed by me, not Miss Daisy"
said by the son to the new driver, meaning she can't sack you, no matter what she says.)
Then as a little help is accepted, build up slowly.

Bod
 

Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
Hello SSpalding and welcome to TP :)

Boy, can I sympathise with your situation! The last couple of years has felt like a constant battle to get mum to accept even the most basic of help. What has worked for her, may not for your mum.....but I have found a ray of hope in that as her mental capacities have declined, it has become easier to help her (that sounds contradictory, but I hope you know what I mean!)

I started really small with a cleaning lady ('everyone has one now', I said brightly :eek:) and then with a peripatetic hairdresser for her hair. That one was easy as she lives in sheltered flats and the lady was easily available. Well, it was easy until mum decided she had stolen her hairdrier. We had six months of that, with me 'looking into it', and buying her a replacement.

Age UK here have a toenail cutting service, so I got them in ('it's for all pensioners') and at least I know her feet are washed once a month. That volunteer is a saint, by the way!

I order shopping online for delivery on Saturdays, when I make sure I'm there to put it all away....and throw out last week's out of date stuff.

As Bod says, though, this tinkering around the edges is no longer enough. I now have carers in twice daily, which mum hates with a passion, but absolutely needs just to keep body and soul together. I guess it was when she was losing weight, her wee was like treacle, she drank so little and she looked terrified despite her expressed preferences, that I decided that she just had to have carers in. It's taken over six months to get established, but now when I ask whether J has been today, she can either not remember the visit, or not remember that she has care at all.

So that's what I mean, it's been an uphill struggle, but worth it in the end.

Hope you gradually get things sorted out. Just don't expect too much all at once! :)

Lindy xx
 

SSpalding

Registered User
Mar 18, 2015
6
Hello SSpalding and welcome to TP :)

Boy, can I sympathise with your situation! The last couple of years has felt like a constant battle to get mum to accept even the most basic of help. What has worked for her, may not for your mum.....but I have found a ray of hope in that as her mental capacities have declined, it has become easier to help her (that sounds contradictory, but I hope you know what I mean!)

I started really small with a cleaning lady ('everyone has one now', I said brightly :eek:) and then with a peripatetic hairdresser for her hair. That one was easy as she lives in sheltered flats and the lady was easily available. Well, it was easy until mum decided she had stolen her hairdrier. We had six months of that, with me 'looking into it', and buying her a replacement.

Age UK here have a toenail cutting service, so I got them in ('it's for all pensioners') and at least I know her feet are washed once a month. That volunteer is a saint, by the way!

I order shopping online for delivery on Saturdays, when I make sure I'm there to put it all away....and throw out last week's out of date stuff.

As Bod says, though, this tinkering around the edges is no longer enough. I now have carers in twice daily, which mum hates with a passion, but absolutely needs just to keep body and soul together. I guess it was when she was losing weight, her wee was like treacle, she drank so little and she looked terrified despite her expressed preferences, that I decided that she just had to have carers in. It's taken over six months to get established, but now when I ask whether J has been today, she can either not remember the visit, or not remember that she has care at all.

So that's what I mean, it's been an uphill struggle, but worth it in the end.

Hope you gradually get things sorted out. Just don't expect too much all at once! :)

Lindy xx
Thank you so much Lindy for your reply I think we have been expected too much too soon. I like your idea of a cleaning lady that everyone has and also getting a hairdresser to the house I treated mum to a nice haircut for Mother's Day but her hair is already back to how it was down to her not washing it. We will persevere xx
 

SSpalding

Registered User
Mar 18, 2015
6
There comes a time when you have to do what you have to do!
I fear your time has come, help will have to go in, whether she likes it or not.
Carers will have to take her wishes into account, so little may be achieved.
As family you can be more robust in achieving better care for her.
It is very important that all family members agree as to what is to be done. This will avoid conflicts between the people trying to improve the situation.
Start small and build up, Family member to take the dog for walks, till it is accepted that the dog is walked by someone other than her self, then put in a Dog walker.
(Use the line from Driving Miss Daisy, "you are employed by me, not Miss Daisy"
said by the son to the new driver, meaning she can't sack you, no matter what she says.)
Then as a little help is accepted, build up slowly.

Bod
Bod this is a great idea for mum to gently get used to her dog get taken out by some-one else apart from her. We also have a neighbour who lives across the street who has offered to help out as well if we start this process hopefully the neighbour can be slowly introduced as well. Thank you.
 

SSpalding

Registered User
Mar 18, 2015
6
I'm not offering advice but everything you say about your mother echoes what we went through with my mother. She lived in a lovely flat, and could have stayed there until the end IF she had accepted help from carers.

But she refused. "Non compliant" is what the doctors, the occupational therapist, the care agency etc... all kept saying.

So we had no choice but to move her into care, so she could be properly fed and less at risk, when in fact she could have stayed in her own home, which is what she always said she wanted.

I realise that saying "I want to stay in my own home" is not enough. You have to make an effort, accept help... some people just cannot do that. I don't know if it is the illness, or temperament - or both ?
Hi Angela how long was your mum "non-compliant" for before the decision was made?
 

SSpalding

Registered User
Mar 18, 2015
6
I think it is often because the person genuinely doesn't think there is anything wrong with them - they can't remember that they can no longer do or manage this or that. So why would they want strangers in the house? Of course innate stubbornness will also play a part, if the person has always been like that and dislikes anyone else 'taking over' or telling them what to do.
I agree mum is in complete denial and the sad thing is she used to be an excellent carer herself to residents in a home who had dementia we are not sure if this is the reason she is not wanting to admit she has the condition because she is scared.
 

SSpalding

Registered User
Mar 18, 2015
6
My mum never wanted carer's although I was doing quite a lot for her I needed help with her morning wash before I lived with her. She got them in a roundabout way as she had fallen and broken her wrist and the SS arranged a care package for her. My mum was non-compliant, she would let me wash her but did not want anyone else touching her. When the plaster came off I made sure the care package remained in place, you need help in this situation and I had to have some even though my mum thought she "didn't need it". Her white socks had gone brown because she could not take them off and wash them, she was using tea towels for incontinence pads. I contacted the Nurse at her surgery and made sure she had proper incontinence pads. I can remember her GP telling me that I would have to take control of the situation.

I think refusing is partly the dementia and my mum was trying to stay independent.
Unfortunately staying with mum is not an option for us we have a very small care package and intend to hold onto it as long as possible for mum we know the carers can't force mum to have a shower but it is hoped they can encourage her they are meant to be monitoring the situation.
 

Angela T

Registered User
Jul 13, 2014
187
France
Hi Angela how long was your mum "non-compliant" for before the decision was made?
She was diagnosed last April, and the psychiatrist said she refused everything they offered (day centre etc) "She lacks insight into her situation, she is non-compliant".

We introduced carers from last August, because the psychiatrist said to me "You have to impose care, she can't continue like this, there is self-neglect", but my mother wouldn't let them in, or if she did, she let them stay for 10-15 minutes, so they couldn't do anything for her. The care agency repeated "We are doing all we can, but she is non-compliant".

So when neighbours told me in January that me she was wandering outside with no coat or keys, and leaving the gas on... we knew we had no choice but to go for a care/nursing home. We couldn't introduce more care at home, or full-time care at home, because she was already refusing the little we had tried to put in place.

She is still not really settled - she joins in activities etc and enjoys all the attention, but she tries to get up at night, saying she wants to go home. The NH manager said to me yesterday "She is VERY determined...".

I know the illness doesn't help, but my mother has always been extremely difficult - and that doesn't help either !
 

Delphie

Registered User
Dec 14, 2011
1,269
Hi Angela how long was your mum "non-compliant" for before the decision was made?
My mum was very much like Angela's, and was 'non-compliant' for probably a year or so, during which I tried all sorts. I upped my input into her life, but she was extremely paranoid and took against me and my sons, thinking we were stealing or hiding her things. She also took what she saw on TV and applied it to me, so I was this massive trouble maker in her eyes, getting evicted from a gypsy camp, rioting in London, all the bad stuff basically. I tried carers but she mostly wouldn't let them in and would hide in the house (and not eat, as she only ate out at that time) or climb over the back wall to escape from them. No matter how many times the plumber told her the boiler was safe, she forgot and wouldn't have the heating on because she thought her house would explode. She toileted in the garden or by using cooking pans because she thought her toilet was broken (and again, no matter how many times she was shown that it wasn't, nothing changed).

So the stress (all round) just became too much, she was cold, living in filth and increasingly aggressive. I couldn't leave her like that and, to be honest, my health was taking a major hit too. Something had to give.

I looked at lots of care homes, found an excellent one, told her we were going on holiday (she was used to travelling), took her there and left.

It took her a while to settle and I had to cut down on my visits to begin with but she's so much better now, it's amazing. She's clean, warm, well fed and very proud of her large house, and happy to see me. Without a doubt, her quality of life has improved, as has mine, and I expect her to have a longer and happier life as a result.

I still get sad that this life she now has is so limited, as compared with what she had before (businesses, travel etc), but the truth is that what she has and does is all she's capable of, and the routines, activities and friendships are more than enough. I can't cure her, so this is as good as it gets.
 

marionq

Registered User
Apr 24, 2013
6,008
Scotland
Delphie that is such a positive, can do, post that I must thank you for it. This is never an easy disease to handle but as you say a way must be found and can have good or at least better outcomes.
 

Essie

Registered User
Feb 11, 2015
563
I still get sad that this life she now has is so limited, as compared with what she had before (businesses, travel etc), but the truth is that what she has and does is all she's capable of, and the routines, activities and friendships are more than enough. I can't cure her, so this is as good as it gets.
That's so well put Delphie, it's so hard sometimes to accept how things have changed for our LO's but the reality is what it is and wishing it was different is just pointless. And the changes that have to be made can be a positive thing, as they have been for your Mum. And I love that she sees it as 'her big house' :D
 
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Delphie

Registered User
Dec 14, 2011
1,269
Delphie that is such a positive, can do, post that I must thank you for it. This is never an easy disease to handle but as you say a way must be found and can have good or at least better outcomes.
And a thank you right back! :)
 

Delphie

Registered User
Dec 14, 2011
1,269
That's so well put Delphie, it's so hard sometimes to accept how things have changed for our LO's but the reality is what it is and wishing it was different is just pointless. And the changes that have to be made can be a positive thing, as they have been for your Mum. And I love that she sees it as 'her big house' :D
Yes, it's great! There's a whole story to it too, about how she came to have it. And what's brilliant is that her room is her house too, so having people around in the rest of the place doesn't bother her at all. If it's a phase it's a good one, and long may it last!
 

Angela T

Registered User
Jul 13, 2014
187
France
It took her a while to settle and I had to cut down on my visits to begin with but she's so much better now, it's amazing. She's clean, warm, well fed and very proud of her large house, and happy to see me. Without a doubt, her quality of life has improved, as has mine, and I expect her to have a longer and happier life as a result.

I still get sad that this life she now has is so limited, as compared with what she had before (businesses, travel etc), but the truth is that what she has and does is all she's capable of, and the routines, activities and friendships are more than enough. I can't cure her, so this is as good as it gets.
Delphie, how long did it take your mother to settle ? My mother left her flat 2 months ago, but is not settled.

I agree about the improved quality of life... and although their new life is limited compared to what they did before, it probably is enough - and as you say, we can't cure our mums, so this is as good as it gets.

They are better off warm and well fed and surrounded by smiling carers, than being lonely in their own homes.