What's best for mum?

Justsofedup

Registered User
Oct 14, 2018
11
0
Hi all new member but struggling with what to do with mum. She was diagnosed with Alzheimer's 6 years ago she lives on her own about 30 miles away. I have a sister nearby to me we both have POA but she deals with all the financial side. Mother is self funding but has been an unpleasant person all her life particularly to me. She has a care agency in 3 times a day and has become increasingly abusive to them specially if they are not the same ethnicity as her. She was going to a day centre but her behaviour is so aggressive plus she is incontinent-urine- the centre have refused to have her back . She refuses to use incontinence pads so just wets everywhere. She throws the pads at the carer . She rings me constantly we just ignore the calls at home. She is completely dependent on the carers for meals dressing and until recently personal hygiene but now with the incontinence she has started to refuse this as well.

To be honest I think half of her behaviour is to wind me up. My wife and friends disagree with me . My friend suggested I put her name down for a care home but I'm waiting for the carers to tell me when this is necessary. Plus I don't see why she should pay care home fees if she's still going to refuse to wear pads. She hates her own home and is always wanting to go out but her behaviour is making things difficult. Should I put her name down for a care home?
 

nellbelles

Volunteer Host
Nov 6, 2008
9,842
0
leicester
Hello and welcome @Justsofedup

This all sounds very difficult situation but it does look as if it’s not going to be long before crisis arrives.
Maybe it’s time for social services to be asked to conduct a needs assessment, that may help you decide on the best way forward for your mum.
It does sound from your post that even you are thinking she’s not going to be capable of looking after herself a much longer and remain safe.

I’ve attached the link to the Alzheimer’s society fact sheet if that is of help to you
https://www.alzheimers.org.uk/get-support/legal-financial/assessment-care-support-england
 

Sirena

Registered User
Feb 27, 2018
2,324
0
In answer to your question, IMO yes you should.

In answer to your question 'why should she pay care home fees' - because she is not coping at home. It's likely she is anxious and stressed by being alone for much of the time. There is no way of predicting how she will behave if she moves to a care home, but she may become less aggressive because she feels less anxious, and the care home staff may have ways of dealing with her that improve the situation. It sounds as if the current situation is not working for your mother so something has to change.
 

Beate

Registered User
May 21, 2014
12,179
0
London
It is not in the nature of dementia to deliberately wind other people up. They have a brain disease and don't know how to behave rationally anymore. Most of the time, their unreasonable looking behaviour is borne out of anxiety and fear, as the world makes no sense anymore.

Why would you want to wait for other people to tell you, people who don't even know her that well? It's not their responsibility to tell you what to do anyway - the decision for a care home is a highly individual one. You're her daughter, you can see how she struggles without carers weighing in. Staff in care homes often have a lot more success with challenging behaviour and getting people to wear pads as a carer who only has less than an hour a time with a client, but you need to carefully select one and ask what behaviour they are prepared to tolerate and able to deal with. Not all dementia homes are created equal!
 

Rosettastone57

Registered User
Oct 27, 2016
1,839
0
Hi all new member but struggling with what to do with mum. She was diagnosed with Alzheimer's 6 years ago she lives on her own about 30 miles away. I have a sister nearby to me we both have POA but she deals with all the financial side. Mother is self funding but has been an unpleasant person all her life particularly to me. She has a care agency in 3 times a day and has become increasingly abusive to them specially if they are not the same ethnicity as her. She was going to a day centre but her behaviour is so aggressive plus she is incontinent-urine- the centre have refused to have her back . She refuses to use incontinence pads so just wets everywhere. She throws the pads at the carer . She rings me constantly we just ignore the calls at home. She is completely dependent on the carers for meals dressing and until recently personal hygiene but now with the incontinence she has started to refuse this as well.

To be honest I think half of her behaviour is to wind me up. My wife and friends disagree with me . My friend suggested I put her name down for a care home but I'm waiting for the carers to tell me when this is necessary. Plus I don't see why she should pay care home fees if she's still going to refuse to wear pads. She hates her own home and is always wanting to go out but her behaviour is making things difficult. Should I put her name down for a care home?

It sounds like the time for a care home has already arrived. To be blunt, her needs outweigh her wants. I agree with other posters why are you relying on the carers to tell you what to do? You need to make difficult decisions. Start looking for somewhere suitable.
 

Justsofedup

Registered User
Oct 14, 2018
11
0
It is not in the nature of dementia to deliberately wind other people up. They have a brain disease and don't know how to behave rationally anymore. Most of the time, their unreasonable looking behaviour is borne out of anxiety and fear, as the world makes no sense anymore.

Why would you want to wait for other people to tell you, people who don't even know her that well? It's not their responsibility to tell you what to do anyway - the decision for a care home is a highly individual one. You're her daughter, you can see how she struggles without carers weighing in. Staff in care homes often have a lot more success with challenging behaviour and getting people to wear pads as a carer who only has less than an hour a time with a client, but you need to carefully select one and ask what behaviour they are prepared to tolerate and able to deal with. Not all dementia homes are created equal!

Thank you for the response. I'm just afraid that my own children's inheritance will be sucked away in care home fees. Mum's self funding and we are struggling with her behaviour. Both my sister and I have always had a difficult relationship with her and I struggle to take responsibility for her when she's been so unpleasant to family over the years .
 

Beate

Registered User
May 21, 2014
12,179
0
London
It isn't an inheritance unless someone has died. Until then the money is for the individual to use on themselves for the best possible life or care. Inheritance isn't a right, it's a privilege if any money happens to be left at the end. Yes, care homes cost money, but they are often very necessary, I'm afraid. Your children shouldn't come into this at all.
 

Hazara8

Registered User
Apr 6, 2015
697
0
Hi all new member but struggling with what to do with mum. She was diagnosed with Alzheimer's 6 years ago she lives on her own about 30 miles away. I have a sister nearby to me we both have POA but she deals with all the financial side. Mother is self funding but has been an unpleasant person all her life particularly to me. She has a care agency in 3 times a day and has become increasingly abusive to them specially if they are not the same ethnicity as her. She was going to a day centre but her behaviour is so aggressive plus she is incontinent-urine- the centre have refused to have her back . She refuses to use incontinence pads so just wets everywhere. She throws the pads at the carer . She rings me constantly we just ignore the calls at home. She is completely dependent on the carers for meals dressing and until recently personal hygiene but now with the incontinence she has started to refuse this as well.

To be honest I think half of her behaviour is to wind me up. My wife and friends disagree with me . My friend suggested I put her name down for a care home but I'm waiting for the carers to tell me when this is necessary. Plus I don't see why she should pay care home fees if she's still going to refuse to wear pads. She hates her own home and is always wanting to go out but her behaviour is making things difficult. Should I put her name down for a care home?

Every situation is different. However, there is a general factor which comes to pass when having to approach a difficult decision in terms of caring for a loved one with dementia. That is one which embraces both 'best interests' and a gut feeling that things are no longer manageable. The problem with dementia and the varied causes - of which Alzheimer's is one - is that it is so complex by nature, that it requires enormous energy and insight in order to address it. What appears to be open aggression or sheer stubbornness, can be an actual pesentation of dementia in essence. Even in some Homes, you will see Carers reprimanding a resident for violence or aggressive behaviour, not in a harsh way, but never the less, a reprimand all the same - which is a mistake and often a costly one. The brain is damaged and that needs to be understood - despite personal knowledge of a person and how they normally behave. There is fear, loneliness, confusion and all manner of reasons behind 'behaviour'. At the end of the day it is vastly challenging and if nothing else, we have to apply both compassion and 'comfort'. It has been said, that dementia at an advanced stage can be alike you arriving at your house after work, only to be told that it is not your house at all, even although you believe with all your heart and soul, that it is. That can be frightening.

A GOOD Care Home can alleviate some of these problems, albeit never cure them. And strange as it might seem, residents with a dementia, can 'communicate' in a unique way, which can be at times, positive in outcome. The physical aspects (change of pads, washing etc) can also be addressed with sensitivity and dignity - not always at all easy - in a regime which can also prove beneficial to a resident after a time.

The move into Care is never easy a decision, but it is a fact of life and if one is focussiing on the 'best interests' of the party concerned (not forgetting the Carer in that process) then it is the right one. What you most certainly do not want is for things to develop into "emergency respite" - which can be a genuine nightmare scenario for all concerned.

All good wishes.
 

Tassie

Registered User
Jul 13, 2017
18
0
Durham
Hi all new member but struggling with what to do with mum. She was diagnosed with Alzheimer's 6 years ago she lives on her own about 30 miles away. I have a sister nearby to me we both have POA but she deals with all the financial side. Mother is self funding but has been an unpleasant person all her life particularly to me. She has a care agency in 3 times a day and has become increasingly abusive to them specially if they are not the same ethnicity as her. She was going to a day centre but her behaviour is so aggressive plus she is incontinent-urine- the centre have refused to have her back . She refuses to use incontinence pads so just wets everywhere. She throws the pads at the carer . She rings me constantly we just ignore the calls at home. She is completely dependent on the carers for meals dressing and until recently personal hygiene but now with the incontinence she has started to refuse this as well.

To be honest I think half of her behaviour is to wind me up. My wife and friends disagree with me . My friend suggested I put her name down for a care home but I'm waiting for the carers to tell me when this is necessary. Plus I don't see why she should pay care home fees if she's still going to refuse to wear pads. She hates her own home and is always wanting to go out but her behaviour is making things difficult. Should I put her name down for a care home?
 

Tassie

Registered User
Jul 13, 2017
18
0
Durham
Hi all new member but struggling with what to do with mum. She was diagnosed with Alzheimer's 6 years ago she lives on her own about 30 miles away. I have a sister nearby to me we both have POA but she deals with all the financial side. Mother is self funding but has been an unpleasant person all her life particularly to me. She has a care agency in 3 times a day and has become increasingly abusive to them specially if they are not the same ethnicity as her. She was going to a day centre but her behaviour is so aggressive plus she is incontinent-urine- the centre have refused to have her back . She refuses to use incontinence pads so just wets everywhere. She throws the pads at the carer . She rings me constantly we just ignore the calls at home. She is completely dependent on the carers for meals dressing and until recently personal hygiene but now with the incontinence she has started to refuse this as well.

To be honest I think half of her behaviour is to wind me up. My wife and friends disagree with me . My friend suggested I put her name down for a care home but I'm waiting for the carers to tell me when this is necessary. Plus I don't see why she should pay care home fees if she's still going to refuse to wear pads. She hates her own home and is always wanting to go out but her behaviour is making things difficult. Should I put her name down for a care home?
 

Tassie

Registered User
Jul 13, 2017
18
0
Durham
The difficulties with your mums pads, abusiveness to carers and constant phone calls are all signs that her condition needs more intervention and unless 24hr care at home is an option then it has to be a care home. Inheritance cannot be a consideration, as POA your focus has to be on what is best for your mum.
 

Bunpoots

Volunteer Host
Apr 1, 2016
7,342
0
Nottinghamshire
Hello @Justsofedup. I know how you feel about all your mum's money being used by Carehome costs but it sounds as though there isn't much choice anymore. I've recently had to make this difficult choice for my dad. He too was refusing to wear incontinence pants as he didn't think he had a problem.

Even though your mum would be self funding it might be worth getting in touch with social services to find out which care homes (or agencies if you are considering keeping her at home) are best at dealing with behaviour like your mum's. (Say you don't know how much your mum has and if she hasn't got much savings she will get a 12 week disregard of the house) Also the GP to get a referral to a CPN (community psychiatric nurse) who may also be able to recommend a daycentre which can cope with these behaviours.

But I think a Carehome placement is close now.
 

Justsofedup

Registered User
Oct 14, 2018
11
0
The difficulties with your mums pads, abusiveness to carers and constant phone calls are all signs that her condition needs more intervention and unless 24hr care at home is an option then it has to be a care home. Inheritance cannot be a consideration, as POA your focus has to be on what is best for your mum.
I know deep down that everyone is right. Thanks for the blunt responses. I suppose I was just trying to put off the inevitable.
 

Helly68

Registered User
Mar 12, 2018
1,685
0
I think many of us have been in similar situations. It is hard, particularly if you have had a distant or not positive (I use the term diplomatically to describe some of our family relationships) relationship with a PWD this can make things difficult when they become reliant on you or others for support - whether they recognise this or not.
As it can take PWD a while to settle in a new environment, if you do decide to go down the care home route, probably good to start sooner rather than later. As more and more people, sadly, now have dementia many homes have a waiting list for places - especially the good ones.
 

Sirena

Registered User
Feb 27, 2018
2,324
0
I know deep down that everyone is right. Thanks for the blunt responses. I suppose I was just trying to put off the inevitable.

While agreeing with the others that there is no inheritance while your mother is alive, I can understand how you feel about it. All my mother's money is likely to go on care home fees, but I never really expected to get any money from her, I thought it would be used up one way or another before she died. And of course there IS a way of preserving her money, and that's to look after her myself but I am not prepared to do that. She has good care, I don't have to provide it and nor do I have to rely on the Local Authority (yet) so it's a good use of her money as far as I'm concerned.
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
While agreeing with the others that there is no inheritance while your mother is alive, I can understand how you feel about it. All my mother's money is likely to go on care home fees, but I never really expected to get any money from her, I thought it would be used up one way or another before she died. And of course there IS a way of preserving her money, and that's to look after her myself but I am not prepared to do that. She has good care, I don't have to provide it and nor do I have to rely on the Local Authority (yet) so it's a good use of her money as far as I'm concerned.

@Sirena I agree with that. Money well spent as far as I am concerned, I wish dad had gone in a home long ago, it would have been better for everyone especially me. Sod the inheritance.

Bit too late now as he has cancer and I don't have the heart to do it to him so I will just plod on regardless but I would happily have forfeited any inheritance to keep my peace of mind.
 

Rosettastone57

Registered User
Oct 27, 2016
1,839
0
@Sirena I agree with that. Money well spent as far as I am concerned, I wish dad had gone in a home long ago, it would have been better for everyone especially me. Sod the inheritance.

Bit too late now as he has cancer and I don't have the heart to do it to him so I will just plod on regardless but I would happily have forfeited any inheritance to keep my peace of mind.
I think it's the expectation that an inheritance might be forthcoming that then gets dragged away which is exasperating. My husband was very much in denial about his mother's issues and I tried to push for a care home sooner rather than later but it became an emergency in the end. Personally I would have put MIL name down for a care home sooner. I think other posters are right you have look at the bigger picture and do what's best for PWD
 

Sirena

Registered User
Feb 27, 2018
2,324
0
@Duggies-girl must be so difficult when you feel you missed the right moment for a care home. As you say, your peace of mind is more valuable than how much money is left.
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
@Duggies-girl must be so difficult when you feel you missed the right moment for a care home. As you say, your peace of mind is more valuable than how much money is left.

Yes but it is too late now. Dad has terminal oesophageal cancer (although he is looking well at the moment) he is not being treated other than the stent that he has had for almost six months so he is not going to get better. I am just trying to make his last bit of time as nice for him as possible. He doesn't even know that he is ill so is quite happy in himself but getting ever more forgetful everyday. I know it would distress him if he went into a home at this late stage and I am just not prepared to do that, so what will be will be.

It seems like a long haul but it will end, not sure when but it will.
 

Lindy50

Registered User
Dec 11, 2013
5,242
0
Cotswolds
Yes but it is too late now. Dad has terminal oesophageal cancer (although he is looking well at the moment) he is not being treated other than the stent that he has had for almost six months so he is not going to get better. I am just trying to make his last bit of time as nice for him as possible. He doesn't even know that he is ill so is quite happy in himself but getting ever more forgetful everyday. I know it would distress him if he went into a home at this late stage and I am just not prepared to do that, so what will be will be.

It seems like a long haul but it will end, not sure when but it will.
Really admire and respect what you're doing @Duggies-girl, if you don't mind me saying so....
You have done your level best by your dad and continue to do so. I hope things work out as well as possible for you, your dad and your hubby X
Hugs
Lindy xx
 

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