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Want to cry after visiting my mother

Lemons

Registered User
Aug 27, 2019
20
My mother lives over 100 miles away and I try to visit her when I can. Each time I go I am aware that my mother is deteriorating and I feel I am beginning to grieve for her as her brain slowly dies. It always hits me when I get home and I feel guilty not being able to help her more and just want to cry. What is frustrating is that I have to rely on the Extra Care Sheltered Accommodation to provide for my mother's needs which I feel are not being met properly.

I found my mother smelling of faeces when I visited earlier this week. When I investigated I found faeces on her bedding and her nightie. My mother is a proud lady and had not told anyone, but it was clear to see and smell when I went into her bedroom. I questioned the manager and she said she was unaware my mother had dirtied herself. I helped clean my mother up and put the dirty clothing into a soils bag.

I arrived at my mum's flat at 1.30pm and was only informed that my mum had had several accidents in the dining room during the week at 7pm that night when the carer came to give my mum her tablets, and I was told I needed to get mum some pull-ups as she had wet herself. I was really upset and contacted my brother who sees my mum three times a week as he is closer and no one had informed him either. What saddened me was that no one told me via email or telephone that my mum had had several accidents and would need pull-ups. If I had known I would have got a friend who lives not far from my mum to buy some incontinence pants.

Where mum lives it is not a nursing home so care is done by the day staff who encourage the tenants to do as much as they can themselves. My mum says she can cope so the staff leave her be. But I know she needs more help but I was told if they interfere and insist on helping with personal care etc when my mum has not asked for it, it is tantamount to abuse. I just feel useless being so far away and not being able to help more or keep an eye on the care my mum is being given. My mum can't remember if she has had any help, and gets distressed because she can't remember.

I find all of this distressing.
 

TNJJ

Registered User
May 7, 2019
1,214
cornwall
It sounds like your mums needs have progressed.Although your brother pops in 3times a week it sounds like she may need more care. Especially as she cannot remember things. Maybe she needs a new assessment by SS.
It is a very difficult thing to care for a PWD .It definitely pulls on the emotions.I hope you get some answers .Sending ((hugs)))
 

Lemons

Registered User
Aug 27, 2019
20
It sounds like your mums needs have progressed.Although your brother pops in 3times a week it sounds like she may need more care. Especially as she cannot remember things. Maybe she needs a new assessment by SS.
It is a very difficult thing to care for a PWD .It definitely pulls on the emotions.I hope you get some answers .Sending ((hugs)))
My mum had a recent assessment by SS and they said mum was fine where she is! As my mum can't fund herself she is at the mercy of the council and where mum lives there is no money for social care so keeping elderly people with/without Altzheimers in their homes (sheltered with extra care or not) is their priority. Moving apparently according to the Social Worker will disorientate mum, so she wants mum to stay where she is and will review her again in a year's time.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
My mum had a recent assessment by SS and they said mum was fine where she is! As my mum can't fund herself she is at the mercy of the council and where mum lives there is no money for social care so keeping elderly people with/without Altzheimers in their homes (sheltered with extra care or not) is their priority. Moving apparently according to the Social Worker will disorientate mum, so she wants mum to stay where she is and will review her again in a year's time.
Please don’t accept that answer, as the social workers assessment obviously didn’t have the full picture. Obviously finding your mum soiled means that the carers aren’t meeting her needs.
Also please don’t buy incontinence pants contact the GP & request that the surgery assess the incontinence & if there is a medical explanation other than dementia.
I was told my mum didn’t need help , asked to buy pull ups ; I didn’t agree or purchase pull ups & within a matter of weeks through sheer stubbornness had a new memory clinic assessment done & the paperwork to prove deterioration .
I’m afraid if you don’t persist then no one listens
 

Sirena

Registered User
Feb 27, 2018
2,137
I can understand how upsetting this is for you. Your mother's needs have increased, it sounds as if she needs to be in a care home. To move this forward I agree with DD you will have to be very persistent with Social Services. The SW will have visited your mother and asked her if she feels she is coping, your mother will have said yes she's fine and the SW took her at her word. This is what happened with my own mother, SWs are very happy to believe everything is fine as it is. Your mother will be saying she's fine till the end of time - it's a feature of dementia that the person thinks everything's okay when it's all falling apart around them.

You and your brother should start documenting every incident like the incontinence episodes and any other times your mother's safety or dignity is put at risk, and email SS. The emails will create a paper trail and allow you to put more pressure on SS to take action.

And yes please do get in touch with your mother's GP re the incontinence. The NHS will provide 4 inco pads a day for free.
 

Lemons

Registered User
Aug 27, 2019
20
Please don’t accept that answer, as the social workers assessment obviously didn’t have the full picture. Obviously finding your mum soiled means that the carers aren’t meeting her needs.
Also please don’t buy incontinence pants contact the GP & request that the surgery assess the incontinence & if there is a medical explanation other than dementia.
I was told my mum didn’t need help , asked to buy pull ups ; I didn’t agree or purchase pull ups & within a matter of weeks through sheer stubbornness had a new memory clinic assessment done & the paperwork to prove deterioration .
I’m afraid if you don’t persist then no one listens
DesperateofDevon, I did contact the GP and they had mum assessed for incontinence and the District Nurse rang me up wanting to know who had referred her. I said I had asked the doctor to and she told me my mother didn't have a problem. Age Uk came to see my mum and they left some incontinence pads that my mum hated as they were uncomfortable and wouldn't use them. The Memory Clinic have discharged mum too saying she is on the tablets now and that is all they can do. The doctor told me that where mum is is the best place for her as there is support there. If she were to be moved then the council have said they won't pay the £1,000 a week for her care and my mum doesn't have that sort of money either. I feel that I am going round in circles.
 

Lemons

Registered User
Aug 27, 2019
20
I can understand how upsetting this is for you. Your mother's needs have increased, it sounds as if she needs to be in a care home. To move this forward I agree with DD you will have to be very persistent with Social Services. The SW will have visited your mother and asked her if she feels she is coping, your mother will have said yes she's fine and the SW took her at her word. This is what happened with my own mother, SWs are very happy to believe everything is fine as it is. Your mother will be saying she's fine till the end of time - it's a feature of dementia that the person thinks everything's okay when it's all falling apart around them.

You and your brother should start documenting every incident like the incontinence episodes and any other times your mother's safety or dignity is put at risk, and email SS. The emails will create a paper trail and allow you to put more pressure on SS to take action.

And yes please do get in touch with your mother's GP re the incontinence. The NHS will provide 4 inco pads a day for free.
Sirena, I have been very persistent with the SW and as you say she has taken mum's word for it that she is ok. I have emailed constantly updating her on mum's decline and change of needs, and any incidents that have happened but she says I have to address these issues with the manager where mum lives. The manager says all is fine and they are updating her care needs etc etc and the SW takes the word of the manager. I was not able to get to the last meeting as our family suffered a sudden tragic bereavement and was appalled that the SW discharged my mum and will review her in a year's time. My brother did not challenge this at the meeting, which I would have.

Being so far away it is difficult for me to see what is going on and my mum can't remember to tell me. My brother just pops in and out as he can and can't cope with the repetitive questions etc so switches off. Things only come to light when I visit. My mother is adamant that she wants to stay in her little flat and says she would hate to be in one room. She is not a social person so wouldn't venture out into the communal areas. At 90 she just wants it all to end, she is so aware of what is going on and hates that she is losing her memory. Mum saw her two older sisters decline in the same way and it frightens her as she knows she is going the same way.
 

Sirena

Registered User
Feb 27, 2018
2,137
It sounds as if you've done all you can. You know she has people checking on her regularly, she is in a familiar environment and wants to stay there. Maybe it is the best environment for her, despite its failings. There may reach a point where the management feels unable to accommodate her increasing needs, which will prompt SS to take further action.
 

Palerider

Registered User
Aug 9, 2015
1,435
North West
A very difficult situation for you @Lemons

Its really hard to get the SS to bite the bullet, in the end I had to constantly badger the SS and finally contact mums MP to get things sorted, but that was because she was wandering and I had reached a situation where I couldn't do much more on my own even though I lived with mum, I also had to work.

It is not for the SW to decide on what fees will be paid, it has to be assessed by their managers and a case made for the fees if it comes to that.

What is significant here and a point I would argue is one of neglect which leads into safegaurding issues. I think I would get back to the SS on Monday and change the language used to one of 'neglect'. A care home might not provide the answers either, but trialling it might be a way forward and lead to some agreement from the SS
 

Lemons

Registered User
Aug 27, 2019
20
It sounds as if you've done all you can. You know she has people checking on her regularly, she is in a familiar environment and wants to stay there. Maybe it is the best environment for her, despite its failings. There may reach a point where the management feels unable to accommodate her increasing needs, which will prompt SS to take further action.
Thanks, Sirena.
 

Lemons

Registered User
Aug 27, 2019
20
A very difficult situation for you @Lemons

Its really hard to get the SS to bite the bullet, in the end I had to constantly badger the SS and finally contact mums MP to get things sorted, but that was because she was wandering and I had reached a situation where I couldn't do much more on my own even though I lived with mum, I also had to work.

It is not for the SW to decide on what fees will be paid, it has to be assessed by their managers and a case made for the fees if it comes to that.

What is significant here and a point I would argue is one of neglect which leads into safegaurding issues. I think I would get back to the SS on Monday and change the language used to one of 'neglect'. A care home might not provide the answers either, but trialling it might be a way forward and lead to some agreement from the SS
Thank you for your advice palerider, so sorry to hear you had such a struggle.
 

Pete1

Registered User
Jul 16, 2019
579
Hi @Lemons, I feel for you, its extremely distressing to witness. I experienced the same with my poor Mum who was oblivious of the continence issues - however, the continence Nurse did provide useful advice and with care support Mum would accept the pads. As we were self-funding I also arranged for Home Care Support with to help with this - not sure if that is an option in the supported setting that your Mum is in. I agree do use the word 'neglect' with Social Services. The one thing that can occur with the continence issues is frequent UTI's (even when there is care ensuring the PWD is clean, but significantly increased likelihood when they aren't) which can cause a lot of confusion for a PWD, so it is isn't just the cleanliness/personal hygiene situation it can have a negative impact on their well-being. Stay strong, keep posting.
 

Lemons

Registered User
Aug 27, 2019
20
Hi @Lemons, I feel for you, its extremely distressing to witness. I experienced the same with my poor Mum who was oblivious of the continence issues - however, the continence Nurse did provide useful advice and with care support Mum would accept the pads. As we were self-funding I also arranged for Home Care Support with to help with this - not sure if that is an option in the supported setting that your Mum is in. I agree do use the word 'neglect' with Social Services. The one thing that can occur with the continence issues is frequent UTI's (even when there is care ensuring the PWD is clean, but significantly increased likelihood when they aren't) which can cause a lot of confusion for a PWD, so it is isn't just the cleanliness/personal hygiene situation it can have a negative impact on their well-being. Stay strong, keep posting.
@Pete1 thank you for your kind words. I am thinking of contacting mum's doctor again to raise the issue of incontinence and to tell them how I found mum when I visited. Mum constantly has UTI's, but then she has a history of them as well.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
@Pete1 thank you for your kind words. I am thinking of contacting mum's doctor again to raise the issue of incontinence and to tell them how I found mum when I visited. Mum constantly has UTI's, but then she has a history of them as well.
I was repeatedly told that mum said she didn’t have this or that problem when she did!
it’s an awful situation to be in I know.
Don’t take any notice just bulk email to GP & cc social services!
seriously the more open you are the less ability to hide from the reality of the situation others have.
 

Lemons

Registered User
Aug 27, 2019
20
I was repeatedly told that mum said she didn’t have this or that problem when she did!
it’s an awful situation to be in I know.
Don’t take any notice just bulk email to GP & cc social services!
seriously the more open you are the less ability to hide from the reality of the situation others have.
@DesperateofDevon thank you for your supportive words, I shall try emailing the GP as getting hold of them on the telephone is not easy. Then one rings me back whom I haven't dealt with before and we go round in circles and they say go to the manager and discuss with her mum's problems.

@Pete1 and @DesperateofDevon I have figured out why mum says she doesn't need or want any help, it's because she only trusts me with her personal care, she is really frightened of other people and feels no one treats her properly. She says none of the carers knows what they are doing, the only person she can trust is me. Mum has always had trust issues so this is nothing new. But she is canny too as she knows I can't visit often!
 

canary

Registered User
Feb 25, 2014
11,648
South coast
I have a feeling that nobody is going to do anything until the manager says that they can no longer meet your mums needs, so make sure that he is aware of what is going on and that your mum is refusing help.
However, incontinence is not something that can be hidden for long and pretty soon there will be complaints. It is horrible to have to go through this process, but Im sure things will come to a head soon.
 

Weasell

Registered User
Oct 21, 2019
135
I think the best bet is to talk to the manager and ask for help.
Presumably they are staffed for ‘supported living’ not dementia care.
The ratio of staff is very different.
I think you need documentary evidence and obtaining the cooperation of the staff is essential.
With the correct evidence I am sure you will get what you want.
’ If it isn’t written down it didn’t happen’ !!!!!!!!!
 

Pete1

Registered User
Jul 16, 2019
579
I have figured out why mum says she doesn't need or want any help, it's because she only trusts me with her personal care, she is really frightened of other people and feels no one treats her properly.
Hi @Lemons, it's very tough as I think most feel the same way - my Mum was totally resistant to any outside help (Carers/Cleaners etc), however, I explained to her that it was to help me as much as her (which was true). I think @canary is right, it probably will come to head at some point soon, all you can do is to engage with the supported living facility to ensure they are fully aware of the situation (as you see it - not Mum) and the GP. I personally found this one of the most difficult challenges, even with care support and medication. All the best.
 

Lemons

Registered User
Aug 27, 2019
20
I have a feeling that nobody is going to do anything until the manager says that they can no longer meet your mums needs, so make sure that he is aware of what is going on and that your mum is refusing help.
However, incontinence is not something that can be hidden for long and pretty soon there will be complaints. It is horrible to have to go through this process, but Im sure things will come to a head soon.
@canary I think you are right, but the manager keeps saying my mum is in the right place and they can deal with her problems. They know mum is refusing help and they say they can't make her as that is against her rights. SW said the same. Doctor's too go by what the manager says. My brother recently had an argument with one of the care staff as he was trying to follow the "keep everything" consistent for mum and the staff member did her own thing confusing mum. He spoke to the duty manager who just fudged him off. I hope it does come to a head soon, but am not holding my breath.
 

Lemons

Registered User
Aug 27, 2019
20
I think the best bet is to talk to the manager and ask for help.
Presumably they are staffed for ‘supported living’ not dementia care.
The ratio of staff is very different.
I think you need documentary evidence and obtaining the cooperation of the staff is essential.
With the correct evidence I am sure you will get what you want.
’ If it isn’t written down it didn’t happen’ !!!!!!!!!
Each time I visit I go and have a talk with the manager @Weasell, and she says she will do things. Then she says it is up to mum to ask for help and they can't do anything if she won't ask for help. They have told mum she must socialize to help her Altzheimers but mum has never been one for socializing as she is frightened of people. They keep telling her she must and mum says no. Then we are told it is mum's fault she is lonely and at risk of isolation because she won't mix with the other residents. No one wants to listen that mum has never liked socializing and just say she has to do it. I find it interesting that the care staff will be insistent on this area but ignore her need for help with other things. For example, she needs prompting to eat, the staff may come in and make her a sandwich and leave it for mum to eat. It may or may not get eaten. I think personally the staff ratio to the number of tenants is too small and they just haven't got the time to spare to give that extra care, even though it is down as an Extra Care Sheltered Accommodation Facility.

I write everything down and I have emailed the Social Worker with the info but again everything is put down to mum not participating and refusing help. No one can do anything because mum won't ask or accept help.