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What is really getting to me is the anger

GillPJ

Registered User
Jun 2, 2020
46
What is really getting to me is the anger, the helplessness, the inevitability of my own mortality.
I try very hard to be patient, understanding, but when you’re waiting to have your own lunch and mum falls asleep in the middle of hers, it’s frustrating. The inability to see how you’re affecting someone else’s life is frustrating. Yes, I’m sure you’d rather stay in bed, but I’ve got to cook dinner.. Where is the line between we’ve got to do it my way and we’ve got to do it your way. There’s no instruction manual.
Is my own mental health health more or less important than my mother’s mental health? Emphasis around blogs like these seems to be on patient health, which is fair enough, but who cares for the carers?
My back hurts from lifting, my mum hurts from me lifting her. Everything I do is met with an ooh aah, should I bother or not? If what I do is causing my mother pain, should I even be doing it?
My own life is slipping away while I’m doing things that my mother would rather I didn’t do. Who is right?
She doesn’t want to be alive, she’s told me so. so what am I doing?
I expect this will either be taken as a plea for help, or a selfish rant, depending on your bias. I’m just so tired and want it all to go away.
 

Palerider

Registered User
Aug 9, 2015
1,858
North West
No it's not a selfish rant or plea for help, that is certain from many on here who know only too well what you mean. I know only one thing, I battled at home too, and I am glad I did but I also knew the time had come where no matter what I did it didn't matter anymore because this is what this disease does towards the end. It takes away the person we knew and drives us into despair trying our best to help them.

Maybe its time to re-think where to go from here, hard I know but there comes a point when being a carer doesn't work anymore and its time to think about what next?
 

GillPJ

Registered User
Jun 2, 2020
46
Thanks for your lovely reply. Unfortunately my options are limited being a foreigner in a foreign land where the only language my mother knows is English.
 

Bod

Registered User
Aug 30, 2013
1,270
Where in the world are you?
There maybe a local member who can give you local advice.

Bod.
 

Louise83

Registered User
Feb 5, 2019
79
I saw a quote on here once that stuck with me, "the person with dementia does not trump the carer". Your health and mental health is just as important.
 

canary

Registered User
Feb 25, 2014
12,923
South coast
It doesnt sound like a selfish rant to me - your life sounds pretty awful, if Im honest. You are right, there is no instruction manual and the only person who will look after carers are us, the carers, who have to look after ourselves. The trouble is that we put ourselves at the bottom and ignore our own needs. Is there no way that you can get extra help? Can you access a care home? Im afraid that I have no idea how the system works in France, but I do wonder what would happen if you were suddenly taken ill and were no longer able to care for your mum at all. There must be something, surely.
 

Amelie5a

Registered User
Nov 5, 2014
121
Scotland
Life sounds tough - no wonder you're at your wits' end!

Do you have any support at all?

I presume your Mum is within the French health system, so you ought to be able to tap into help. This thread from 4 years ago gives some leads.


Courage!
 

Quite contrary

Registered User
Jan 5, 2020
102
Ilford, Essex
Hello @GillPJ. Have you tried looking on this website alz.org/france ? Hope you manage to get some much needed help and support. Someone once told me 'you need to look after yourself first in order to be able to care for others'. Do take care of yourself and let us know how you are getting on.
 

GillPJ

Registered User
Jun 2, 2020
46
Thanks all, and for the links as well :) Sometimes it helps a lot just to have a rant.
 

Flavelle

Registered User
Jun 20, 2017
48
GillPJ
Hope you are OK. I know the loop of doing what you can to help and then feeling locked into repeatedly giving more. When my perspective changed I was more able to continue the cycle without being as impacted by weird games.
You are the decision maker here so please prioritise your own eating. Eat your meal first, enjoy it, chances are your Mum wouldn’t have one if you didn’t prepare it and then provide loads of help. It might sound harsh but if she didn’t want to live she wouldn’t drink. Your mental health is way more important, you’re the care giver. I am questioning the motivation behind her saying she doesn’t want to live, in my experience PWD try to cling onto their version of the world by controlling others. If you can recognise the beauty of the world in small things first, then you’ve more strength to reframe a negative comment as being that person’s point of view (while you relish your own and enjoy the look of a flower, or feel of the sun!) Could well be that if the game doesn’t work they’ll be no point her playing it...I am sending this with the greatest respect for what you are managing. Hiugs
 

GillPJ

Registered User
Jun 2, 2020
46
That's very true Flavelle, and I do just that a lot of the time, I take the dogs for a walk, and started having breakfast before getting her up now.
I do understand that she doesn't have a very good quality of life now though - arthritis in her hands, very bad eyesight and becoming increasingly hard of hearing, can't walk, doubly incontinent, the diabetes on top of that, and now the bed sores. I don't think she's playing a game, I think she really is just tired of life, though of course it's instinct to cling on to it.
 

Palerider

Registered User
Aug 9, 2015
1,858
North West
I do understand that she doesn't have a very good quality of life now though - arthritis in her hands, very bad eyesight and becoming increasingly hard of hearing, can't walk, doubly incontinent, the diabetes on top of that, and now the bed sores. I don't think she's playing a game, I think she really is just tired of life, though of course it's instinct to cling on to it.

Hmm it sounds like she is tired and frail. People with advanced dementia can't be manipulative, to do that requires a functioning brain and an intact working memory. It's hard but as others have said looking after yourself is important which can be an effort. I confess I didn't look after myself in some respects, and came very close to having significant heart problems which luckily were nipped in the bud at the time.

Hopefully you will continue to find some 'me time' -its so improtant.
 

Flavelle

Registered User
Jun 20, 2017
48
That's very true Flavelle, and I do just that a lot of the time, I take the dogs for a walk, and started having breakfast before getting her up now.
I do understand that she doesn't have a very good quality of life now though - arthritis in her hands, very bad eyesight and becoming increasingly hard of hearing, can't walk, doubly incontinent, the diabetes on top of that, and now the bed sores. I don't think she's playing a game, I think she really is just tired of life, though of course it's instinct to cling on to it.
Its good to hear what you do GillPJ in moments of relative peace...my mindful place is my garden.
I do hope some positive change might come out of this virus crisis, in my experience at times folkWD have had enough and if they repeatedly head towards the ground and damage themselves over and over it’s heartbreaking when physical breaks are patched up regardless of whether repeated operations are what they would have wantEd (when with capacity)? I wonder post COVID...if there is a thing..if LPAs and DNR forms will been ignored (as they have previously, in my experience.)
Amazing, isn’t it, tho’ in a disturbing way how long the body continues to try and do it’s thing. Wishing you peaceful dog walks! Take care
 

GillPJ

Registered User
Jun 2, 2020
46
Thanks, all, what a lovely bunch you are. I think I can cope without carers for the time being, but I hope you'll forgive me the occasional rant.
 

Citroen 2cv

Registered User
Mar 1, 2019
72
Spain
What is really getting to me is the anger, the helplessness, the inevitability of my own mortality.
I try very hard to be patient, understanding, but when you’re waiting to have your own lunch and mum falls asleep in the middle of hers, it’s frustrating. The inability to see how you’re affecting someone else’s life is frustrating. Yes, I’m sure you’d rather stay in bed, but I’ve got to cook dinner.. Where is the line between we’ve got to do it my way and we’ve got to do it your way. There’s no instruction manual.
Is my own mental health health more or less important than my mother’s mental health? Emphasis around blogs like these seems to be on patient health, which is fair enough, but who cares for the carers?
My back hurts from lifting, my mum hurts from me lifting her. Everything I do is met with an ooh aah, should I bother or not? If what I do is causing my mother pain, should I even be doing it?
My own life is slipping away while I’m doing things that my mother would rather I didn’t do. Who is right?
She doesn’t want to be alive, she’s told me so. so what am I doing?
I expect this will either be taken as a plea for help, or a selfish rant, depending on your bias. I’m just so tired and want it all to go away.
Not a rant at all. I can empathise with you totally. I’m at same level in my life. I have started to look at care homes now as I’m not only feeling anger but resentment as well. I have all the compassion for mum but selfish or not we DO deserve our own lives.