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sheena0 Posted August 2017

Who can help?

I can't cope with my mother any more she has lewybodies dementia she was diagnosed in 2010 I moved to the house next door to care for her after diabolical care service. I always said I wouldn't let her go into a home but now I am caring for her 24/7 I can only be paid 28hrs a week which means I am under the 30hr thresh hold to get working tax credits (I am a single parent my 16 yr old still at school studying for ALevels. I have had to give up work completely. I get just a little too much to get carers allowance. Mum recently started going to a day centre twice a week for 5 hrs. Great initially but now I just try to get all chores for her and me done in that time I have to myself, she has become so child like. I have a telecare system set up during the night to let me know when she opens front/back doors. This means I get calls throughout the night which works well because I know she is safe. When I try to get her to go back to bed she is very argumentative and aggressive a couple of days ago around 5.30am she threw a full glass of water in my face. Today I told her she had to go and clean her teeth she didn't want to then made out she had tripped and lied stiff as a board on the floor. I got her up and she said she wished she was dead (she says this often these days when she is being nasty and stubborn). My mother was always the most gentle loving person s played back and good natured. I am exhausted every bone in my body aches I have pains in my arms and hands my feet are extremely painful when I first get up in the morning I have a thyroid problem and also suffer with IBS I get a deep pain in my back since I was in a bad car accident in March this year and bad headaches I have been to see my doctor for myself they just say it's stress and I should try to loose some weight even gave me gym details. I don't have time or energy to do any thing anymore I know this all sounds a bit self-centred but I just can't cope I used to have a thriving business I went to the gym regularly I was always fit and healthy but now every waking day is a struggle just to take care of my mum who has turned into a 4yr old

BarbBrooklyn Aug 2017
Sheena; as you may be aware, UTI's cause behavioral symptoms in the elderly. Hopefully, that is what is causing your mom to act up in this way and a week on antibiotics will return her to the sweetheart she normally is.

But dementia progresses, inevitably and inexorably. It's hard not to take things personally and it's hard to say to yourself "her brain is broken and that's why she's acting like a spoiled 3 year old".

Start thinking about the hows and wherefores of getting her more care as she progresses.

Bella7 Aug 2017
So sorry sheenaO,  ours moms kinda sound the same. It's very hard to slowly watch them change in so many different ways, very sad AND stressful. I too am hypothyroid, usually controlled with my meds. Since all the "drama" with both my divorced parents sick for the last year I've been forgetting to take my med or get it filled at pharmacy. My fault? Yes...I just don't care...constant pain in certain areas like arthritis, aches, brain fog. Today I'm gonna try to take steps to feel well again...to kinda start liking "me" and not feel guilty about it. Been hating on myself a lot.
Just thinking about my parents "problems or their questions" that may come up today makes me tense up and hurt.

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sheena0 Aug 2017
Barbbrooklyn I am in the U.K. but not England I'm in Wales so our care system and options will be different again to even England. I actually hadn't realised when I joined this group it was a US site.
Thanks to you sue888 GardenArtist and freqflyer for your helpful and thortful and in put.
I see now that what I am dealing with is quite normal as a caregiver
I took mum to the Doctors yesterday as an urgen out of hours appointment, he diagnosed a UTI so I'm hoping this course of antibiotics will get mum back on track.
Today is the 3rd day in a row mum has wet her pjs but also her bed sheet was wet in a heap on the floor but strangely not her mattress nor chair, I don't quite know what she is doing but it is definitely pee.
I'm hoping as she isn't usually incontinent this wetting is just due to the UTI I am off out to get her some incontinance pants and waterproof bedding today while she is at her day centre.
She is being really nasty this morning I have been very calm and told her not to worry about the wetting as we saw the doctor and it's all part of the infection. She just insists there's nothing wrong and someone (probably me) has come in and done his to make it look like it is her.
It makes me so sad she was always so gentle and loving the greatest mum anyone could wish for. Now it's like she hates me I'm trying so hard to keep her safe and happy but now it's like everything I do is wrong 😢

freqflyer Aug 2017
shenna, you wrote "I always said I wouldn't let her go into a home"....

many have said that, but back when the parent(s) were younger and still driving to the grocery store themselves, mowing the lawn, shoveling, snow, running up and down the stairs. How many of us could envision our parent(s) getting older and slowing down to almost a crawl? And how much it would overtake our own lives.

Time to think hard about moving Mom to a care home, and once you get your energy back, to go back to work.

I use to be a gym rat about 8 years ago, and to look at me today you'd think I never ever walked past a gym :P

GardenArtist Aug 2017
Stress is a factor in illness, and in the ability to cope with illness as well as the challenges of caregiving. I can always that I'm stressed (or the weather is changing) when my latest injury begins to hurt.

Sheena, you're burnt out from the stress of caregiving. You're at a difficult crossroads b/c the changes that need to be made will be ones that likely will anger your mother and make you feel guilty. Others here have been through similar situations.

I too don't know what's available "across the Big Pond", but if you can't get help in the home then some type of facility might be the next consideration.

This is a difficult crossroads for you, and for many, but you're already in declining health and that isn't going to change as long as the contributing factors don't change.

We caregivers don't always make comparisons to other factors ruining our health.... if we have illnesses, we take meds, rest, and try to get well. If we have chronic conditions, we address them hopefully as best we can.

But caregiving can contribute to a different kind of illness and is clouded by our emotions and obligations to our family, even when those obligations begin to exert negative influence.

You're not in an easily solvable position; remember that as you try to find solutions for the current dilemma. And best wishes to you.

sue888 Aug 2017
I'm so sorry for all you're dealing with. Your doctors are right about the stress causing health problems. My mom lived with me for 18 months and was no where as needy as your mom. I too have thyroid problems controlled by medication. After a few months I was sick all the time. I think my immune system was shot. My arms, hands, legs hurt. In the mornings I couldn't even open my hands it was so painful. Doctors did blood tests for arthritis but the blood work didn't show anything. They thought I had carpal tunnel and I wore braces on my wrists. They wanted me to do further testing to determine wether I needed surgery.
Anyway, my health continued to deteriorate. Finally my mom moved to an independent living apartment. Magically all my health problems started to disappear. It's been two years now and all my health problems are gone. I visit my mom, take her shopping and to appointments but I am in control of my life again.
I don't know what options are available to you but make it a priority to find out. You need to get out of this situation or it will kill you!

BarbBrooklyn Aug 2017
It sounds like you're in England, yes?

It also sounds as though your mom has progressed to the point where she needs 24/7 care. That simply cannot be done by one person.

She needs either to be in a care center or she needs other carers coming in.

How that works on your side of the Atlantic is a mystery to me. I'm going to try to find one of our folks local to you to help answer.

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