Exhausted

DeeCee7

Registered User
Oct 13, 2023
321
0
@Jakesterblack sorry to hear your Mum is in hospital. Prior to this she was ( eventually) having carers in. Going forward, do you think this will still work on her discharge from hospital, or is this an opportunity for her to go to a care home under a D2A? Then she could be properly assessed over 4-6 weeks to see what the next step will be. Going on your past experiences, I would definitely try for this.
 

Jakesterblack

Registered User
May 20, 2022
88
0
Thank you all for your replies. Mum is in advanced dementia now so i think this is us reaching the breaking point and when we took her into A & E and sat for 11 hours to be seen they said they would put a cathetar in and would one of us ie me or sister be able to stay overnight with mum at home... i think then the reality really sank in that we can no longer cope and even though carers are in and out during the day what is mum actually doing during the night, we have no idea... so i am being totally realistic that this may be the time even if the delerium passes that we move her somewhere else permanently .. it's just so distressing to watch her decline as you all will know. We are doing a day at a time, i'm working full time my sister is still going through chemo and we are doing what we can and trying not to feel guilty although we both do.....
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
6,293
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@Jakesterblack i have been following your posts and occasionally responding. Neither you or your sister have anything to feel guilty about. From everything I have read it would appear that your Mum would be safest in a care setting. I know that it is a hard decision and not one taken lightly but it would be best for all of you.
 

DeeCee7

Registered User
Oct 13, 2023
321
0
I am so relieved to read you are now realising that your Mum’s needs are now 24/7 and this means a care home setting. I was hoping that if/when she is in care for D2A you and your sister could squeeze in the first of your well deserved breaks. Kick that guilt monster into touch @Jakesterblack . You have been the best of the best for your mum.
 

Jakesterblack

Registered User
May 20, 2022
88
0
I am so relieved to read you are now realising that your Mum’s needs are now 24/7 and this means a care home setting. I was hoping that if/when she is in care for D2A you and your sister could squeeze in the first of your well deserved breaks. Kick that guilt monster into touch @Jakesterblack . You have been the best of the best for your mum.
Thankyou and thank you all for your support, this forum has been such a great help and support x
 

Jakesterblack

Registered User
May 20, 2022
88
0
Mum is still in hospital... she is retaining fluid drinks loads and just keeps saying she doesn't need to pee. Has pulled Cathater out twice and now I'm just thinking is her brain not sending the signal that her bladder is full ? Not getting much feedback from the hospital and nothing yet from social work but where do I even start with finding her somewhere safe to live? Mum also has a lot of savings and I know this will all now be used on her care.... Any advice much appreciated x
 

Karenlansbury

Registered User
Jul 18, 2023
16
0
Hello @Pineapple16

I have a friend who lives with his mum and has come up with a novel solution to her going out at night. People with dementia often see black things as a hole, so he has taped a black bin bag to the floor. During the day it is covered by a large mat and then at night he takes the mat away to uncover it. She sees it as a hole in the floor and doesnt go near it.

I have never come across this solution before and I dont know how well it would work generally, but its a cheap solution and maybe worth trying out.
We have battery operated sensor lights in the hallway outside my mums door and 2 sensory mats one inside her door and one outside her door so we know if mum has got out of bed in the night? Mum has lived with us for over 4 years now and we have our front and back door locked at all times.. the keys are out of sight and have been for about 3 years now? So hopefully that will help?
 

Jakesterblack

Registered User
May 20, 2022
88
0
We have battery operated sensor lights in the hallway outside my mums door and 2 sensory mats one inside her door and one outside her door so we know if mum has got out of bed in the night? Mum has lived with us for over 4 years now and we have our front and back door locked at all times.. the keys are out of sight and have been for about 3 years now? So hopefully that will help?
Hi, I don't live with mum she is on her own
 

Jakesterblack

Registered User
May 20, 2022
88
0
Hi, mum still in hospital 2 weeks later, she has been assessed by the Doctor but not social work they are saying it could take another two weeks... they asked today if she could go home and be assessed there... Is this normal for social work to try and put a patient back home even though you have told them she is at risk during the night with no care and you can't stay over to look after her? I'm baffled by the lack of help from them at the moment...
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
6,293
0
Oh dear @Jakesterblack That is truly awful but not uncommon. All you can do is keep saying NO in no uncertain terms. Keep repeating that your mum is a vulnerable adult, living on her own and it is just not possible for her to be sent home to be assessed. Also state that if they do send her home you will hold them liable for anything that happens to your mum. They have the duty of care, not you.
 

Jakesterblack

Registered User
May 20, 2022
88
0
Oh dear @Jakesterblack That is truly awful but not uncommon. All you can do is keep saying NO in no uncertain terms. Keep repeating that your mum is a vulnerable adult, living on her own and it is just not possible for her to be sent home to be assessed. Also state that if they do send her home you will hold them liable for anything that happens to your mum. They have the duty of care, not you.
I am honestly speechless, i couldn't believe it when he said we could get her home ... they know our situation, they know we have been dealing with this for years and they know it's came to a head and it's affected both my sister who is ill's health has declined and mine is also now due to the stress with all this and holding down a full time job .. thank you so much for replying
 

DeeCee7

Registered User
Oct 13, 2023
321
0
Not more of the same @Jakesterblack ! It’s like Groundhog Day with social services. I hope you have had a chance to regroup whilst your mum has been in hospital, even with all the worry, and have begun to recharge your batteries as this sorry saga limps on. Our PWD was in hospital for a month, then 7 weeks in aD2A care home bed before his best interests meeting, which came about 2 weeks before Christmas and I think they were keen to wrap it up. They agreed he needed 24/7 care and that was a done deal. He was paying anyway!
Just keep on keeping on, as they say. Refuse, refuse and refuse any talk of returning home. Use all the key words and phrases already suggested on here. And yes, it is normal for SS to act like this, getting the patient home and off their hands basically is their goal. It’s cheaper for family and friends to do the care. And everyone knows that carers count for nothing, their right to a normal life is of no consequence… appalling but true.
 

Kimmarg

New member
Mar 31, 2024
1
0
Hi, mum was diagnosed with Alzheimers last July, she is progressively getting worse in many ways. I work full time Monday to Friday and my sister has had to give up work due to illness. We do what we can for mum BUT she will not accept help either in form of a cleaner or carer. We are there every single day/night and are both mentally and physically exhausted. All she keeps saying is that as long as she has the two of us she will be fine obviously not realising the strain she is putting us under and also not realising how ill my sister is. I just don't know what to do any more and actually dread going to visit now.
Hi @Jakesterblack
I have a different perspective. I wouldn't make yourself less available in hopes that your mom would "get it". This would require her to have really good insight, reasoning, and rationalization, and these cognitive skills become impaired throughout the Alzheimer's journey. Anytime we try to reason with a person with Alzheimer's, we may simply be wasting our time- this is not the language that people with Alzheimer's speak anymore. This also asks her to make inferences about your situations, and that is quite abstract for a person with dementia.
A big question with any type of dementia is capacity. Capacity is an ability to understand and appreciate information well enough to make sound choices. Capacity fluctuates, so your mom might make solid decisions sometimes, and not others. However, very complex decisions require a lot of cognitive ability, and your mom might not have this ability any longer.
So, while we always respect her decision, the question is: when you ask her if she would like a cleaner, is she capable of making a good decision in response?

Perhaps it is not a matter of "realizing" that your sister is sick, but truly not being able to understand it because of brain changes.

Do she have the ability to understand how sick your sister is?
Does she have the ability to understand the strain you are under?
Will her brain allow her to understand these things?
Is it fair to ask her to understand these things?

When people lose the ability to have good understanding, insight, and appreciation for choices, then we need to step in and make these decisions on her behalf.

We certainly don't want to make her uncomfortable. However, in the most gentle and supported transition possible, introduce a carer or cleaner. Perhaps a few "friendly visits" first with you and your sister; and then maybe once per week a short visit, and slowly increasing the time. Ensure the hired person has a chance to know your mom well- give them lots of information about her life, preferences, hobbies, interests... so that they can support her for her unique self.

Just my two cents, hope it helps
Kim
 
Last edited by a moderator:

Jakesterblack

Registered User
May 20, 2022
88
0
Hi @Jakesterblack
I have a different perspective. I wouldn't make yourself less available in hopes that your mom would "get it". This would require her to have really good insight, reasoning, and rationalization, and these cognitive skills become impaired throughout the Alzheimer's journey. Anytime we try to reason with a person with Alzheimer's, we may simply be wasting our time- this is not the language that people with Alzheimer's speak anymore. This also asks her to make inferences about your situations, and that is quite abstract for a person with dementia.
A big question with any type of dementia is capacity. Capacity is an ability to understand and appreciate information well enough to make sound choices. Capacity fluctuates, so your mom might make solid decisions sometimes, and not others. However, very complex decisions require a lot of cognitive ability, and your mom might not have this ability any longer.
So, while we always respect her decision, the question is: when you ask her if she would like a cleaner, is she capable of making a good decision in response?

Perhaps it is not a matter of "realizing" that your sister is sick, but truly not being able to understand it because of brain changes.

Do she have the ability to understand how sick your sister is?
Does she have the ability to understand the strain you are under?
Will her brain allow her to understand these things?
Is it fair to ask her to understand these things?

When people lose the ability to have good understanding, insight, and appreciation for choices, then we need to step in and make these decisions on her behalf.

We certainly don't want to make her uncomfortable. However, in the most gentle and supported transition possible, introduce a carer or cleaner. Perhaps a few "friendly visits" first with you and your sister; and then maybe once per week a short visit, and slowly increasing the time. Ensure the hired person has a chance to know your mom well- give them lots of information about her life, preferences, hobbies, interests... so that they can support her for her unique self.

Just my two cents, hope it helps
Kim
Hi,

Mum is now in hospital and we are looking at care homes. We can't carry on the way we are it's been going on too long and we have now accepted that we have tried and there is only so much we can do.

Debbie
 

Jakesterblack

Registered User
May 20, 2022
88
0
Not more of the same @Jakesterblack ! It’s like Groundhog Day with social services. I hope you have had a chance to regroup whilst your mum has been in hospital, even with all the worry, and have begun to recharge your batteries as this sorry saga limps on. Our PWD was in hospital for a month, then 7 weeks in aD2A care home bed before his best interests meeting, which came about 2 weeks before Christmas and I think they were keen to wrap it up. They agreed he needed 24/7 care and that was a done deal. He was paying anyway!
Just keep on keeping on, as they say. Refuse, refuse and refuse any talk of returning home. Use all the key words and phrases already suggested on here. And yes, it is normal for SS to act like this, getting the patient home and off their hands basically is their goal. It’s cheaper for family and friends to do the care. And everyone knows that carers count for nothing, their right to a normal life is of no consequence… appalling but true.
Hi
I thought tbh when she was in hospital it would be easier which is is at night time as I know she is being looked after but the stress with all the phone calls, GP, Social Work, Homes and working full time in the office it's a lot. Then there are the hospital visits, some ok, some not so good and others bizarre as you never really know what you are walking in to. Mum will be paying and the care home we liked has a room but because social work haven't done their assessment we are stuck. I am beginning to realise it's a common occurrence now and they obviously chance their arm with everyone and if you are daft enough to say yes i'll take her home then they will be happy and her assessment will no doubt fall to the bottom of the list. At the moment she is meant to be priority (not for her sake) i think they just want the hospital bed back tbh. It really helps knowing that others understand, thankyou.

Debbie x
 

Jakesterblack

Registered User
May 20, 2022
88
0
Mum been in hospital a month now and still no assessment from social work, we have care homes that can take her and she will be using savings but we need social work to assess her... i phone them couple of times each week and get nothing back.... it's so frustrating, i just want to get her out the hospital and hopefully settled somewhere nice
 

phill

Registered User
Aug 8, 2007
69
0
Mum been in hospital a month now and still no assessment from social work, we have care homes that can take her and she will be using savings but we need social work to assess her... i phone them couple of times each week and get nothing back.... it's so frustrating, i just want to get her out the hospital and hopefully settled somewhere nice
If I were you, I’d write a letter to the Director of Adult Services at the council, explaining how long you have been waiting for a social work assessment and list all the phone calls you’ve made that they haven’t returned. It’s much harder for someone to ignore a physical letter , especially when it’s addressed to senior management.
 

leny connery

Registered User
Nov 13, 2022
408
0
Mum been in hospital a month now and still no assessment from social work, we have care homes that can take her and she will be using savings but we need social work to assess her... i phone them couple of times each week and get nothing back.... it's so frustrating, i just want to get her out the hospital and hopefully settled somewhere nice
 

Jakesterblack

Registered User
May 20, 2022
88
0
If I were you, I’d write a letter to the Director of Adult Services at the council, explaining how long you have been waiting for a social work assessment and list all the phone calls you’ve made that they haven’t returned. It’s much harder for someone to ignore a physical letter , especially when it’s addressed to senior management.
Hi, I will give that a go, just phoned again three times this morning while i'm in work to try and speak to social worker, care home had called and said they have a room and they will try and call him also...
 

leny connery

Registered User
Nov 13, 2022
408
0
hospitalisation is known to de condition people with dementia, It worsen their confusion . It is unbelievable SS can let her languish in hospital for a month. Yes, write to the higher echelon in the SS and demand action, not aggressively but definitely. Good luck and big hugs
 

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