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Left work to help care for Mum

GInaG1968

New member
Oct 1, 2021
7
0
Hello all

I’m so glad I found this forum, hi to everyone.

My Mum has mixed dementia, she is 90 years old and lives alone after losing Dad 3 years ago. Around 2 years ago my brother and I wanted to help her as Mum does not like being on her own, we suggested sheltered housing, selling her house and my house to enable us to live together but Mum did not want any of these options.
Even before her dementia diagnosis she could make me feel very guilty that I’m not doing enough even though I saw her almost every day on my way home from work. She had also started drinking sherry and lost her appetite.
My job was stressful and with trying to be with Mum it all got too much and I left my job of 20 years in September 2021 to help care for Mum.
I look after her 6 hours a day while she has carers visit 3 times a day. She still says that she hates living on her own. I have done everything to make her happy but nothing seems to be good enough. I love her very much.
My brother visits twice a week for a couple hours a day.
Mum’s dementia is getting worse, she gets confused, sees things and asks the same questions over and over.
Recently I have been getting quite low with the situation even though I love Mum and really want to help her but o feel like I’ve lost a bit of me.
Can anyone else relate, I would really appreciate a reply.
Thank you so much.
Kindest wishes.
Gina
 

thistlejak

Registered User
Jun 6, 2020
150
0
You have done a really unselfish thing to give up work to look after your Mum. Unfortunately there comes a time with a lot of PWD that , no matter what you do or how much time you spend with them , it isn't enough - you appear to be getting to this point with your Mum.

Would you consider a couple of weeks respite care for your Mum? She would have the company 24/7 that she appears to desire and you would get a break to recover 'you'.
Not sure how your Mum would take the suggestion but others on here have sold it as ' a break somewhere nice where you will have someone to look after you' or as a 'holiday' - sometimes you have to be a bit creative to get them to do what is needed for everyone's benefit.

Something that is sometimes quoted on here is the instruction given out on planes to 'put on your own mask before assisting someone else' - look after yourself first .Many people find that regular respite gives them the energy to carry on caring for their PWD at home for longer - you are no good to your Mum if you are ill and planned respire is always better than an emergency placement.
 

GInaG1968

New member
Oct 1, 2021
7
0
You have done a really unselfish thing to give up work to look after your Mum. Unfortunately there comes a time with a lot of PWD that , no matter what you do or how much time you spend with them , it isn't enough - you appear to be getting to this point with your Mum.

Would you consider a couple of weeks respite care for your Mum? She would have the company 24/7 that she appears to desire and you would get a break to recover 'you'.
Not sure how your Mum would take the suggestion but others on here have sold it as ' a break somewhere nice where you will have someone to look after you' or as a 'holiday' - sometimes you have to be a bit creative to get them to do what is needed for everyone's benefit.

Something that is sometimes quoted on here is the instruction given out on planes to 'put on your own mask before assisting someone else' - look after yourself first .Many people find that regular respite gives them the energy to carry on caring for their PWD at home for longer - you are no good to your Mum if you are ill and planned respire is always better than an emergency placement.
Thank you so much for your reply thistlejak. I will certainly look into it and suggest it to Mum.
I never really realised how hard this could be.
Take care.
 

nita

Registered User
Dec 30, 2011
2,277
0
Essex
Hi @GInaG1968 - I can empathise with you as, I too, left work to look after my Mum as she had chronic pain. She developed dementia 2 years later and 6 years after that she passed away. It was hard. For the last 3 and a half years Mum was bedbound so I had to have carers 4 times a day to change and turn her. I felt at screaming point at times as I seemed to have hardly any time to myself and when I did get any I wanted to sleep. I think it was the sleepless nights that were the worst part but I had my brother to fill in at times and we had a sitters' service that would give me a couple of hours' respite during the day occasionally.

Have you looked into this - I was allowed so many hours free respite by a carer's agency via the doctor's. I don't know if this is still available. Otherwise, you would have to pay carers to sit for a couple of hours with your Mum. By the time I got this service, my mother accepted it. I don't think she would have initially as she hated having carers at first.

The idea of respite in a care home is a good one but I am not sure how easy it is to get this with the current situation (likewise the home carers) as they are understaffed.

Is your mother on the right medication - you say she hallucinates. Has she seen the doctor lately or the memory or older person's clinic?

I found out after my mother had passed that there was specific dementia support from the Carers' hub in our community which would have helped me talk through some of the issues I faced, not least the heartbreaking realisation of what was happening to her as I too had been close to my Mum. Have you tried the Alzheimer's society - you should have a local branch or you can ring the helpline on this site.
 

Sarasa

Volunteer Host
Apr 13, 2018
4,174
0
Hi @GInaG1968 and welcome to Dementia Talking Point. This is a very friendly and supportive place and you'll get lots of help and advice here.
Looking after someone with dementia is a really tough job as the person with dementia (PWD) often is not happy no matter what you do to try and improve their lives. I think even if you moved in 24/7 your mother would still be saying she is unhappy and lonely.
Do you have Power of Attorney as that will make the next stage much easier. As @thistlejak suggests I'd look for a care home for a bit of respite with a view to your mum moving their permanently, if not now, sometime in the next few months. If your mum was in a care home you'd be able to become her daughter again not a frazzled carer. Doing that isn't failing your mum, but doing the best for her. The other thing you could do is see if there are any day centres your mum could go to or clubs you could both get involved in. I know covid has curtailed a lot of things but there may be things on near you that your mum would enjoy. This link might be useful.
 
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nita

Registered User
Dec 30, 2011
2,277
0
Essex
If your Mum moves into a care home, and you say she owns her own house, the situation will be that unless she has ample savings, her house will have to be sold. I expect you know that. Unless someone who is over 60 or disabled is living in the house with her, that is the case, unless the council agrees to a discretionary disregard.
 

canary

Registered User
Feb 25, 2014
16,748
0
South coast
Please remember that people with dementia get to the stage where if you ask them if they want to do something their answer is almost invariably no - they are no longer able to envisage what you are asking and saying no is the safe option. However, as the dementia progresses their needs get more and more so you get to the point when their wants are superseded by their needs and you have to be prepared to override their wishes.

Also, dont forget that your needs count too.
 

lollyc

Registered User
Sep 9, 2020
673
0
Hello all

I’m so glad I found this forum, hi to everyone.

My Mum has mixed dementia, she is 90 years old and lives alone after losing Dad 3 years ago. Around 2 years ago my brother and I wanted to help her as Mum does not like being on her own, we suggested sheltered housing, selling her house and my house to enable us to live together but Mum did not want any of these options.
Even before her dementia diagnosis she could make me feel very guilty that I’m not doing enough even though I saw her almost every day on my way home from work. She had also started drinking sherry and lost her appetite.
My job was stressful and with trying to be with Mum it all got too much and I left my job of 20 years in September 2021 to help care for Mum.
I look after her 6 hours a day while she has carers visit 3 times a day. She still says that she hates living on her own. I have done everything to make her happy but nothing seems to be good enough. I love her very much.
My brother visits twice a week for a couple hours a day.
Mum’s dementia is getting worse, she gets confused, sees things and asks the same questions over and over.
Recently I have been getting quite low with the situation even though I love Mum and really want to help her but o feel like I’ve lost a bit of me.
Can anyone else relate, I would really appreciate a reply.
Thank you so much.
Kindest wishes.
Gina
Hi @GInaG1968 , I too gave up work to care full time for Mum - she lives with me - and I really had no idea how hard it would be (I wouldn't do it again!) Dementia is all consuming, and takes over ever single of aspect of your life, in ways that you could not possibly imagine. Nothing prepares you for it. Mum has had a couple of spells of respite (she is luckily quite compliant), and it has given me a bit of time to refind me. Pre Covid she also attended various club, where I could leave her for a few hours, and deal with all the aspects of my life that were suffering - shopping, dentist, doctor, that sort of thing. These sort of activities are still running, in a somewhat different format. It might be that your mum could attend something like this, or a daycentre, of even daycare at a care home, just to give you a break. Look after yourself.
 

My Mum's Daughter

Registered User
Feb 8, 2020
128
0
I gave up work in June last year, partly because I was just working caring and sleeping but mostly due to Covid. I just found that I couldn't work with 200 others and then try to social distance while caring for Mum. Nobody could tell me how we were supposed to cope if I had to self-isolate, so it was bye bye job.
 

TNJJ

Registered User
May 7, 2019
2,367
0
cornwall
Hello all

I’m so glad I found this forum, hi to everyone.

My Mum has mixed dementia, she is 90 years old and lives alone after losing Dad 3 years ago. Around 2 years ago my brother and I wanted to help her as Mum does not like being on her own, we suggested sheltered housing, selling her house and my house to enable us to live together but Mum did not want any of these options.
Even before her dementia diagnosis she could make me feel very guilty that I’m not doing enough even though I saw her almost every day on my way home from work. She had also started drinking sherry and lost her appetite.
My job was stressful and with trying to be with Mum it all got too much and I left my job of 20 years in September 2021 to help care for Mum.
I look after her 6 hours a day while she has carers visit 3 times a day. She still says that she hates living on her own. I have done everything to make her happy but nothing seems to be good enough. I love her very much.
My brother visits twice a week for a couple hours a day.
Mum’s dementia is getting worse, she gets confused, sees things and asks the same questions over and over.
Recently I have been getting quite low with the situation even though I love Mum and really want to help her but o feel like I’ve lost a bit of me.
Can anyone else relate, I would really appreciate a reply.
Thank you so much.
Kindest wishes.
Gina
Hi. I gave up work to look after my dad and to help with my mum( divorced different houses) . Dad has VD . He has the same conversation about the weather etc.I looked after him for 6 years. In the last year 4 full days a week with the carers coming in the other days. I had to give it up as it got too much. He is immobile and has to be moved with equipment. I felt depressed every day and in the end I had enough. I have an idea of what you are feeling as I have been through it. ((Hugs))
 

Jessy82

Registered User
Mar 15, 2021
91
0
Gina, I moved in with my mum last year, I cut my work to 15 hours a week, she has 8 hours at daycare 2 days a week and sittersfor the other 6 hours. Going to work is my respite, I
It's hard work looking after mum full time, mainly the incontinence, apart from that she is very compliant. I have good days and bad days, but take each day as it comes.
 

Duggies-girl

Registered User
Sep 6, 2017
3,005
0
I was working as a barmaid, lunchtime then evening and that meant going to dad in the morning, then working in the afternoon then back to dads, then back to work in the evening. Flipping impossible.
 

GInaG1968

New member
Oct 1, 2021
7
0
Hi @GInaG1968 - I can empathise with you as, I too, left work to look after my Mum as she had chronic pain. She developed dementia 2 years later and 6 years after that she passed away. It was hard. For the last 3 and a half years Mum was bedbound so I had to have carers 4 times a day to change and turn her. I felt at screaming point at times as I seemed to have hardly any time to myself and when I did get any I wanted to sleep. I think it was the sleepless nights that were the worst part but I had my brother to fill in at times and we had a sitters' service that would give me a couple of hours' respite during the day occasionally.

Have you looked into this - I was allowed so many hours free respite by a carer's agency via the doctor's. I don't know if this is still available. Otherwise, you would have to pay carers to sit for a couple of hours with your Mum. By the time I got this service, my mother accepted it. I don't think she would have initially as she hated having carers at first.

The idea of respite in a care home is a good one but I am not sure how easy it is to get this with the current situation (likewise the home carers) as they are understaffed.

Is your mother on the right medication - you say she hallucinates. Has she seen the doctor lately or the memory or older person's clinic?

I found out after my mother had passed that there was specific dementia support from the Carers' hub in our community which would have helped me talk through some of the issues I faced, not least the heartbreaking realisation of what was happening to her as I too had been close to my Mum. Have you tried the Alzheimer's society - you should have a local branch or you can ring the helpline on this site.
Thank you Nita, Mum isn’t on medication for her dementia. Do you think this would help. Her doctor said they would refer to a memory clinic and that was 3 months a go.
I will look into a local care hub/Alzheimer’s society as I have so many questions and advice needed.
This forum is great too and very comforting for me. Gina
 

GInaG1968

New member
Oct 1, 2021
7
0
Gina, I moved in with my mum last year, I cut my work to 15 hours a week, she has 8 hours at daycare 2 days a week and sittersfor the other 6 hours. Going to work is my respite, I
It's hard work looking after mum full time, mainly the incontinence, apart from that she is very compliant. I have good days and bad days, but take each day as it comes.
Thank you Jessy for your reply, much appreciated. Gina
 

GInaG1968

New member
Oct 1, 2021
7
0
I was working as a barmaid, lunchtime then evening and that meant going to dad in the morning, then working in the afternoon then back to dads, then back to work in the evening. Flipping impossible.
Bless you, at the end of the day something has to give doesn’t it. Take care.
 

GInaG1968

New member
Oct 1, 2021
7
0
Hi. I gave up work to look after my dad and to help with my mum( divorced different houses) . Dad has VD . He has the same conversation about the weather etc.I looked after him for 6 years. In the last year 4 full days a week with the carers coming in the other days. I had to give it up as it got too much. He is immobile and has to be moved with equipment. I felt depressed every day and in the end I had enough. I have an idea of what you are feeling as I have been through it. ((Hugs))
Isn’t it hard, and some days are harder than others. I just keep telling myself, one day at a time. Mum can still get herself to the commode, albeit holding onto furniture for assistance (she has a walker but chooses the furniture instead).
I am assuming she may well get to the stage where she could become incontinent as the dementia progresses.
I love her very much and feel guilty for getting a little impatient with her I know it’s not really Mum. Take care.
 

GInaG1968

New member
Oct 1, 2021
7
0
I gave up work in June last year, partly because I was just working caring and sleeping but mostly due to Covid. I just found that I couldn't work with 200 others and then try to social distance while caring for Mum. Nobody could tell me how we were supposed to cope if I had to self-isolate, so it was bye bye job.
Thank you for your reply. It’s so hard juggling work and care isn’t it for our loved ones, like you, my job had to go. x