Help with Mum with Dementia

[Flutterbee]

Hello, am new so sorry if this is a common problem. I am 49 years old and live with my Mum who has Dementia. I also work full time and care for my partner who has mental health issues. Mum has a care company that visits her once a week and she refuses to pay for more (she is over the threshold) although she clearly needs more help. I do everything I can, get up early and do chores, make sure she has food prepared / made, clean, sort bills (although I have no POA), keep track of appointments, take time off work to ensure I am with her for any new people that have to attend (vets / chiropodist). My only request is that I have a couple of hours after work to check on my partner and I have told her I will always be home my a certain time. This understanding fluctuates from being ok, to her saying I can be home whenever I want to her saying she needs me home early. I *need* the couple of hours after work for my own mental health and that of my partner. Am I being selfish? How do I deal with it when Mum becomes threatening because of this time away? I try to stay firm and say that I am not going anywhere so she a) feels reassured and b) knows that she cannot scare me but it is so hard when she escalates the threats. Any help / advice is really appreciated. Thank you

[bowlingbun]

The only power mum has over you is the power you let her have. Do not let her control your life.
Dementia affects reasoning.
Do you have Power of Attorney?
Is mum claiming Attendance Allowance?
Exemption from Council Tax?

[Flutterbee]

Mum won't agree to POA as she is too paranoid. She has Attendance Allowance and I sorted out her Council Tax Exemption. She spends all day on her own, she doesn't listen to the radio or music and rarely watches TV. She doesn't read anymore. I've tried everything to get her to do something, I try and read with her but she is not interested. Social Services are useless in my experience. All I hear is her crying for her Mum or her angry and me and she wants me out of her house. It's exhausting and the hardest thing is that she doesn't even realise

[Penny]

Mum won't agree to POA as she is too paranoid. She has Attendance Allowance and I sorted out her Council Tax Exemption. She spends all day on her own, she doesn't listen to the radio or music and rarely watches TV. She doesn't read anymore. I've tried everything to get her to do something, I try and read with her but she is not interested. Social Services are useless in my experience. All I hear is her crying for her Mum or her angry and me and she wants me out of her house. It's exhausting and the hardest thing is that she doesn't even realise

It is very common for people in the later stages of dementia to cry out for their Mum! my Mum did that a lot but she was never nasty to me. Everybody is different though. My Mum was always a great reader but she stopped that in the last year of her life and also wasn’t interested in TV or radio. She did love listening to her Irish music though and that was a brilliant help.

The best thing I ever did for Mum was write down her memories. I started this about 18 months before she died as she loved talking about her childhood. I am so glad I did it now. I typed it all up in a large font and printed it out and in her final days the careworkers in her care home used to read it to her. When she finally passed away one of them told me it was worth it’s weight in gold because when she was anxious or upset (she was by then bedridden) they would read it to her and she would calm down and relax. So actually the last things my Mum would have heard as she left this life were her gentle Irish music and tales of her childhood. that comforts me a lot.

Maybe your Mum needs her medication adjusting and something to make her less agitated. Take care xx

[Pet66]

Hi Bernadette
My husband used to ask if I his mother was visiting. I told him various reasons why she couldn't, from not today,it's too wet, to hot, it's her deaf club meeting ( both of his parents where profoundly deaf ) My reasons seemed to pacify him. Couldn't possibly tell him his parents had died years ago and have him grieving again. Im sure you will find your way of coping with these heartbreaking and difficult situations. He also had times of being verbally aggressive to me. I would walk away, for a few minutes tears streaming, to go back and he had forgotten, and be so pleased to see me.
Take care of yourself, and it's sadly one day, one situation at a time.

[bowlingbun]

I was very concerned to hear that mum is getting aggressive. Is anyone taking this seriously?
Other forum members have found that using their mobile phones to record what was said, or maybe even a short video, has really helped the GP and Social Services understand more about a situation.

Does mum manage her money properly, or is it time someone else managed it? There are various options to consider.
Her Attendance Allowance is paid to her precisely to pay for things like extra care. Can she understand this?
Did you know about the DWP "Appointee" scheme, so you can manage her benefits for her?

You do NOT need to "request" time away from mum! You are an adult, not a child, but as her dementia advances, she will regress and treat you like a child I'm afraid.
As you live with mum, does she own, or rent, her home?
It's a very difficult situation.
How old is mum?
Are you an only child?

Apologies for all the questions, your answers will help us to help you find the best way forward in such a difficult situation.

[Flutterbee]

Mum won't agree to POA as she is too paranoid. She has Attendance Allowance and I sorted out her Council Tax Exemption. She spends all day on her own, she doesn't listen to the radio or music and rarely watches TV. She doesn't read anymore. I've tried everything to get her to do something, I try and read with her but she is not interested. Social Services are useless in my experience. All I hear is her crying for her Mum or her angry and me and she wants me out of her house. It's exhausting and the hardest thing is that she doesn't even realise

It is very common for people in the later stages of dementia to cry out for their Mum! my Mum did that a lot but she was never nasty to me. Everybody is different though. My Mum was always a great reader but she stopped that in the last year of her life and also wasn’t interested in TV or radio. She did love listening to her Irish music though and that was a brilliant help.

The best thing I ever did for Mum was write down her memories. I started this about 18 months before she died as she loved talking about her childhood. I am so glad I did it now. I typed it all up in a large font and printed it out and in her final days the careworkers in her care home used to read it to her. When she finally passed away one of them told me it was worth it’s weight in gold because when she was anxious or upset (she was by then bedridden) they would read it to her and she would calm down and relax. So actually the last things my Mum would have heard as she left this life were her gentle Irish music and tales of her childhood. that comforts me a lot.

Maybe your Mum needs her medication adjusting and something to make her less agitated. Take care xx

I am so sorry for your loss. You have a brilliant idea there regarding a memory journal. Unfortunately all of my Mum's memories seem to be from the horror she witnessed as a child during the Spanish Civil War and other nightmarish things that have happened to her. Maybe I will encourage her to try to remember something nice with your idea in mind and start a journal.

Mum isn't on any medication unfortunately and no one seems to feel the need to put her on meds. I feel a bit stranded.

Thank you for your reply, x

[Flutterbee]

I was very concerned to hear that mum is getting aggressive. Is anyone taking this seriously?
Other forum members have found that using their mobile phones to record what was said, or maybe even a short video, has really helped the GP and Social Services understand more about a situation.

Does mum manage her money properly, or is it time someone else managed it? There are various options to consider.
Her Attendance Allowance is paid to her precisely to pay for things like extra care. Can she understand this?
Did you know about the DWP "Appointee" scheme, so you can manage her benefits for her?

You do NOT need to "request" time away from mum! You are an adult, not a child, but as her dementia advances, she will regress and treat you like a child I'm afraid.
As you live with mum, does she own, or rent, her home?
It's a very difficult situation.
How old is mum?
Are you an only child?

Apologies for all the questions, your answers will help us to help you find the best way forward in such a difficult situation.

I really appreciate the questions. I feel like someone is listening to me so thank you so much for asking.

No one is taking her aggression seriously because she has not physically harmed me or others. It is a shame it has to get to the stage for anyone to take it seriously though. I have taken some recordings but again, as she has "fluctuating capacity", it appears to be ignored.

Mum has no idea about money except for her thinking everyone is stealing from her. She does not open her letters / bills and I have to go through them with her but even then she does not understand. She has someone from the bank coming round now to go through her direct debits etc... My worry is that she will cancel something she actually needs and does not realise it and I can't be there as she cannot remember when they are attending!!

I don't know about the Appointee scheme but I will look into it. She only gets Attendance Allowance though and that gets paid directly into her bank. She is too paranoid to let anyone look after her finances but is unable to understand them. It's infuriating.

Mum owns her own home and I live there with her. I did move out for a bit last year when it all got too much but she begged me to come back and eventually I gave in. I am an only child and there is no other family and she doesn't really have any friends as she is suspicious of everyone. She is 86. I just wish my Dad was still here but he passed away so it is just Mum and me. And here come the tears.... sorry if I'm oversharing.

[bowlingbun]

People usually find the forum when they are stressed out and know that something has to change. I know I did.
I have a brain damaged son, he's 42 lives in a flat with carer support. he comes home regularly and I do lots for him.
I also supported all four of our parents, all disabled and ill for years, you name it, they had it between the four of them.

I left home when I married at 19, I loved mum dearly but we were as different as chalk and cheese in some ways, no way could I live with her, although after my husband died I had lots of unsubtle hints about how nice it would be to have a live in daughter! No house would ever have been big enough.

You have some really tough decisions coming up, as mum's condition worsens. When my husband died, I had no one close to share things with, so on the verge of a breakdown, I had counselling. Absolutely life changing. I couldn't change mum, but I could change how I behaved and thought about things. Most of all, the fact that I had a right to a life of my own. I would thoroughly recommend it.

As mum lacks capacity (I'd challenge the "fluctuating" statement) consider applying for guardianship.

I've never heard of a bank doing home visits, very odd, I'm a bit suspicious about that!

[Flutterbee]

People usually find the forum when they are stressed out and know that something has to change. I know I did.
I have a brain damaged son, he's 42 lives in a flat with carer support. he comes home regularly and I do lots for him.
I also supported all four of our parents, all disabled and ill for years, you name it, they had it between the four of them.

I left home when I married at 19, I loved mum dearly but we were as different as chalk and cheese in some ways, no way could I live with her, although after my husband died I had lots of unsubtle hints about how nice it would be to have a live in daughter! No house would ever have been big enough.

You have some really tough decisions coming up, as mum's condition worsens. When my husband died, I had no one close to share things with, so on the verge of a breakdown, I had counselling. Absolutely life changing. I couldn't change mum, but I could change how I behaved and thought about things. Most of all, the fact that I had a right to a life of my own. I would thoroughly recommend it.

As mum lacks capacity (I'd challenge the "fluctuating" statement) consider applying for guardianship.

I've never heard of a bank doing home visits, very odd, I'm a bit suspicious about that!

Oh my goodness, you are a saint! I feel selfish and resentful looking after one parent. I don't have anyone to turn to either as there is only so much I can burden my partner with as it really distresses him and affects his already poor mental health. I have tried steps to wellbeing but did not find it that useful. That was ages ago so I can self refer again. You have some wise words as you are right, I can't change Mum but I can change my mindset. Easier said that done though! I have challenged the "fluctuating" part but social services do not want to know. Maybe if I hadn't moved back they would have to have more involvement but it just seems that now it's my problem and they have washed their hands.