Exhausted

57mj

Registered User
Jun 6, 2023
11
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, I agree with Violet jane. It so difficult to do the right thing because we love and want to protect our mothers. Every time you ask or suggest anything you will never get compliance. Just arrange it and say 'lets try and see how you get on'. You can always review at anytime. But you and your sister need to step away at times for your own well being.
 

57mj

Registered User
Jun 6, 2023
11
0
You could also suggest that you might have the cleaner too if they are good. That way it will seems like you are sharing the same view on things. The last thing your mum or any mother wants is their independence taken away so you have to be sutle with her knowing it is a shared decision. Say you both will not abandon her and it will help you all.
 

SAP

Registered User
Feb 18, 2017
1,473
0
@Jakesterblack it is so hard isn’t it? I felt the same towards my mum a few months back. She wasn’t aggressive towards me but she was towards her carers at home and then later to carers and residents at her home. Last December,I honestly felt that I could not see her again,my mum was gone and the person left needed my support with finances and decision making but I couldn’t see any relationship beyond that. However, she is now getting the right care and support and she is so happy to see me and I still get glimpses of my mum. It is such a roller coaster but hope your mum will get back to being someone you can be with again.
 

Jakesterblack

Registered User
May 20, 2022
88
0
@Jakesterblack it is so hard isn’t it? I felt the same towards my mum a few months back. She wasn’t aggressive towards me but she was towards her carers at home and then later to carers and residents at her home. Last December,I honestly felt that I could not see her again,my mum was gone and the person left needed my support with finances and decision making but I couldn’t see any relationship beyond that. However, she is now getting the right care and support and she is so happy to see me and I still get glimpses of my mum. It is such a roller coaster but hope your mum will get back to being someone you can be with again.
I hope so. It's just so hard to deal with her just now and it's hurtful the things she says and we do everything for her.
 

Jakesterblack

Registered User
May 20, 2022
88
0
You could also suggest that you might have the cleaner too if they are good. That way it will seems like you are sharing the same view on things. The last thing your mum or any mother wants is their independence taken away so you have to be sutle with her knowing it is a shared decision. Say you both will not abandon her and it will help you all
 

Jakesterblack

Registered User
May 20, 2022
88
0
Ye problem is she won't agree to anything we tried months ago for carer and cleaner and got nowhere and now the decision has been made by us that we need to enforce care and she is still saying she won't let them in and won't have anyone else in her house so we are banging our heads against a brick wall.. We also said we love her and having a carer is help for me and my sister because she is ill and can't keep running up and down to mums so it will give her a break but she has became so nasty and selfish she can't even see that and I know that's the illness so i just think this is the only way we can do it is to step back a bit and let the carers try and deal with her...
 

Firecatcher

Registered User
Jan 6, 2020
605
0
You definitely need to take a giant step back as this situation will get worse and your Mum will expect more and more. You and your sister deserve a life too and in the current climate no one can afford to put their job in jeopardy.
 

Jakesterblack

Registered User
May 20, 2022
88
0
You definitely need to take a giant step back as this situation will get worse and your Mum will expect more and more. You and your sister deserve a life too and in the current climate no one can afford to put their job in jeopardy.
The GP has now confirmed that she requires help and has given me letter to send to the lawyer to go along with the POA... i really didn't want it to get to this stage but realise it's just going to get worse and probably at some point she will end up in care home also... she told GP last night there is nothing wrong with her and she doesn't need help.. it's never going to change and she will never acknowledge it so I am just waiting now on social services getting back to me... she was angry with me again last night and told me not to come back etc i just need to deal with it and as you say get a bit of my life back and spend time with my sister while I can x
 

Jakesterblack

Registered User
May 20, 2022
88
0
Just wanted to update and see if any suggestions, had yet another meeting with social services my sister and mum yesterday, i have authority to enforce care.. i thought yesterday that would be the outcome BUT social worker saying mum still has moments where she is coherent enough to say she won't allow them access and will put keys in door so they can't access house,... usual meeting mum shouting me and my sister in tears and no progress.. basically cut a long story short, can't enforce until she is a risk to herself and they don't think she is at the moment.. so waiting for something to happen, wanders again, sets her house on fire... has another episode been told to call ambulance and get her taken into hospital then care will have to be put in place for her to get home... just feel as before going round in one bit exhausting circle and finding it harder and harder to spend time with mum. She was nasty yesterday hurtful and myself and sister left in tears and deflated ....
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
6,293
0
Just wanted to update and see if any suggestions, had yet another meeting with social services my sister and mum yesterday, i have authority to enforce care.. i thought yesterday that would be the outcome BUT social worker saying mum still has moments where she is coherent enough to say she won't allow them access and will put keys in door so they can't access house,... usual meeting mum shouting me and my sister in tears and no progress.. basically cut a long story short, can't enforce until she is a risk to herself and they don't think she is at the moment.. so waiting for something to happen, wanders again, sets her house on fire... has another episode been told to call ambulance and get her taken into hospital then care will have to be put in place for her to get home... just feel as before going round in one bit exhausting circle and finding it harder and harder to spend time with mum. She was nasty yesterday hurtful and myself and sister left in tears and deflated ....
Oh dear @Jakesterblack how awful for you and your sister. It is all very well for the SW to say that your mum has moments of clarity but what about the rest of the time. I really do think that some SWs live on a different planet from the rest of us. It is totally awful that you are waiting for an accident to happen but unfortunately it seems at present that that is all you can do.
When your mum wanders does she take anything like a handbag with her, if so you could try attaching an airtag. to make her easier to track down and register her with the local police through the Herbert Protocol. Also make sure that some type of alarm is attached to the door. The other thing would be to try to make the house as safe as possible but there is a limit obviously to what you can do.
 

kindred

Registered User
Apr 8, 2018
2,939
0
Oh dear @Jakesterblack how awful for you and your sister. It is all very well for the SW to say that your mum has moments of clarity but what about the rest of the time. I really do think that some SWs live on a different planet from the rest of us. It is totally awful that you are waiting for an accident to happen but unfortunately it seems at present that that is all you can do.
When your mum wanders does she take anything like a handbag with her, if so you could try attaching an airtag. to make her easier to track down and register her with the local police through the Herbert Protocol. Also make sure that some type of alarm is attached to the door. The other thing would be to try to make the house as safe as possible but there is a limit obviously to what you can do.
Social workers are trained with different focus from us. I’ve been involved with supervising social workers and had to mug up on their ideology. It is totally the interests as they interpret it, if the person with dementia. Families are almost the enemy. My GP told me, when I was in the situation with my late husband, that it is train crash management. When the person with dementia has a train crash, a fall, an accident, burns the house down, then they will consider more care. So, indeed, r had a train crash, bad fall, hospital, nursing home.
It is down to us to document and keep pressing. I know it’s awful, I really really do.
Warmest, Kindredx
 

SAP

Registered User
Feb 18, 2017
1,473
0
There are two things at play here. One social services are terrified of being seen to put someone in care who potentially has capacity or being caught out by saying some one does not have capacity and an advocate being involved saying they do ( going through this with another family member at the moment and it’s a nightmare) The other issue is the age old one of trying to save money. Sadly , as long as you and your sister are keeping an eye on your mum,social services don’t give a fig how hard that is,they will let you carry on for as long as possible. You can always tell the social worker that you are not able to continue, you and your sister have reached burn out and in that case there is no one to keep an eye on an vulnerable woman on her own. It’s a tough line to take .
 

Jakesterblack

Registered User
May 20, 2022
88
0
Oh dear @Jakesterblack how awful for you and your sister. It is all very well for the SW to say that your mum has moments of clarity but what about the rest of the time. I really do think that some SWs live on a different planet from the rest of us. It is totally awful that you are waiting for an accident to happen but unfortunately it seems at present that that is all you can do.
When your mum wanders does she take anything like a handbag with her, if so you could try attaching an airtag. to make her easier to track down and register her with the local police through the Herbert Protocol. Also make sure that some type of alarm is attached to the door. The other thing would be to try to make the house as safe as possible but there is a limit obviously to what you can do.
Hi, ye i've registered for herbert protocol a couple of years ago.. last time she went out with her slippers on and nothing else and was picked up by a stranger and brought home but that was a while ago, now thankfully she isn't over the door unless myself or sister take her out but she tells everyone she is out at the library and in town and away shopping..all the things she used to do in the past... I just feel so tired and deflated as I really thought something good would have came from that meeting and care would be set in place
 

Banjomansmate

Registered User
Jan 13, 2019
5,534
0
Dorset
Sadly the only thing you and your sister can do is to step back and refuse to help your mother but very few of us can truly do that for someone we love.
 

Jakesterblack

Registered User
May 20, 2022
88
0
There are two things at play here. One social services are terrified of being seen to put someone in care who potentially has capacity or being caught out by saying some one does not have capacity and an advocate being involved saying they do ( going through this with another family member at the moment and it’s a nightmare) The other issue is the age old one of trying to save money. Sadly , as long as you and your sister are keeping an eye on your mum,social services don’t give a fig how hard that is,they will let you carry on for as long as possible. You can always tell the social worker that you are not able to continue, you and your sister have reached burn out and in that case there is no one to keep an eye on an vulnerable woman on her own. It’s a tough line to take .
We did say to them we're at breaking point and they said drop shopping off once a week....easier said than done. Mum made it clear she doesn't want us there but the reality is she does need us. We are just stuck in a rut now. Sister drove down yesterday and could see mum was up and about through window so just left. It's just like a horrible waiting game tbh
 

Jakesterblack

Registered User
May 20, 2022
88
0
Social workers are trained with different focus from us. I’ve been involved with supervising social workers and had to mug up on their ideology. It is totally the interests as they interpret it, if the person with dementia. Families are almost the enemy. My GP told me, when I was in the situation with my late husband, that it is train crash management. When the person with dementia has a train crash, a fall, an accident, burns the house down, then they will consider more care. So, indeed, r had a train crash, bad fall, hospital, nursing home.
It is down to us to document and keep pressing. I know it’s awful, I really really do.
Warmest, Kindredx
Thank-you for replying. I just feel so guilty when I don't go down and think what if....but the reality is I'm exhausted now and it's so stressful. I promised my dad I'd look after her but it's getting more and more difficult
 

Lawson58

Registered User
Aug 1, 2014
4,422
0
Victoria, Australia
Thank-you for replying. I just feel so guilty when I don't go down and think what if....but the reality is I'm exhausted now and it's so stressful. I promised my dad I'd look after her but it's getting more and more difficult
I have just been catching up on your thread and I believe that if you don’t reduce what you are doing, both of you will collapse with carer burnout. What would your mother do if you were not available day after day to provide her with all her demands?

There is a huge difference between what your mother wants and what she needs. I think your mother is manipulating you to a certain extent and I think the time has come for you and your sister to put in some tough love.

Why don’t you sort out a plan with your sister to reduce the load and then make sure you implement it. Your mother wants you at her beck and call but if she doesn’t ’need’ cleaners or extra help, then you need to tell her that she doesn’t need you either. This gets tough but you should together inform your mum that you will be coming according to your schedule and not hers.

Stay away for a couple of days to give her time to realise that you intend to continue that way. Then come intermittently when it suits you.

It can come as a shock to some people that their loved one is capable of being manipulative when they have dementia but it is very common. A person with dementia does this to feel that they are in control because even though they might be in total denial, there is still a strong drive to feel that everything is only OK if they are pulling the strings.
 

Jakesterblack

Registered User
May 20, 2022
88
0
I have just been catching up on your thread and I believe that if you don’t reduce what you are doing, both of you will collapse with carer burnout. What would your mother do if you were not available day after day to provide her with all her demands?

There is a huge difference between what your mother wants and what she needs. I think your mother is manipulating you to a certain extent and I think the time has come for you and your sister to put in some tough love.

Why don’t you sort out a plan with your sister to reduce the load and then make sure you implement it. Your mother wants you at her beck and call but if she doesn’t ’need’ cleaners or extra help, then you need to tell her that she doesn’t need you either. This gets tough but you should together inform your mum that you will be coming according to your schedule and not hers.

Stay away for a couple of days to give her time to realise that you intend to continue that way. Then come intermittently when it suits you.

It can come as a shock to some people that their loved one is capable of being manipulative when they have dementia but it is very common. A person with dementia does this to feel that they are in control because even though they might be in total denial, there is still a strong drive to feel that everything is only OK if they are pulling the strings.
Hi, I totally agree with what you are saying and for my own health and sanity and sisters we are pulling back. I actually dropped off a load of shopping yesterday put it away but didn't stay, not cleaning, not tidying up i'm just at point I love her and she is my mum but i'm not liking the way things are and feel like I just need to pull back and as you say give her what she needs and not what she wants... don't know how this will play out but something has to be done can't carry on like this...
 

DaisyFrench

Registered User
Oct 25, 2011
17
0
I came across this thread whilst trying to find ways to get my Mum to accept a carer coming into the flat. She really doesn't see that she has care needs. She's not taking medication properly, definitely not eating properly (just having toast most of the time that we're not there) and not washing herself (I had a bath yesterday - she didn't!) or dressing properly. The carer started visiting earlier this week and she basically told them where to go. This morning, she'd bolted the door so that they couldn't use the key we left in the key safe for them. My brother thinks he can have a conversation with Mum and give her the options of no care, care at home or residential care, but she will forget having had that conversation. She's not capable of rational thought any more. My sister and I are spending so much time there. Both of us work full-time. She phones constantly. My sister had 18 missed calls yesterday - Mum saying she's lonely (the first call was only 45 minutes after I'd left her yesterday morning). Over the summer was particularly difficult and my younger sister and I both had burnout and are on anti-depressants and having counselling/awaiting psychotherapy.

We've also come to the realisation that it may take a fall (or similar) for things to change and this being taken out of our hands. Not looking for any answers. Just wanted to off load.