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New member, first post

Hello everyone.

This is my first post to the forum. It’s my mum who has MS and I am one of the family members that provide care.

She was diagnosed in 1972 at the age of 29 and pregnant with her 3rd child (4 kids in total).

Mum is 79 this year and life is hard for all of us. She’s battled against her MS for 50 years and that has often felt like a battle with us and the world.

A few years ago I arranged carers to help her with getting dressed and personal care but she still refuses to allow them to help her and instead would rely on my father to get her dressed and toileted before they arrived. He is suffering from acute osteo arthritis in hips and knees and is also showing increasing signs of dementia.

My brother has moved back to the family home to look after them and the rest of the siblings take it in turn to come back and support.

Recently OT helped hugely with getting their bedroom and toilet floor changed to non slip, easy clean surface, installed a biobidet and a shower and have provided a turn safe transfer aid. The latter helps a bit but is a bit precarious on the new floor.

Getting mum out of bed in the morning and on to the commode is proving extremely difficult and i was wondering what the next step in the journey is. I have bought many many disability aids over the years only to be met with point blank refusal from mum to give things a go.

She’s always been difficult. I’ve never known her to be any other way but is this her personality, her age or the MS that’s making her so belligerent. Maybe it’s all 3.

Sorry to whine. As I said it’s my 1st ever post so I guess I’m reaching out to a community who knows and understands this journey.

Mum and dad live in a very remote part of the country with 1 MS nurse 90 miles away via a ferry so there’s not a lot of knowledgeable help around to advise the family on how best to cope with and what to expect.

Thanks for listening
Jo

Jo,

You are not whining, just responding to a long term tough combination of circumstances. These forums are a great place to let off steam, because people here have an understanding and empathy; even when their own circumstances are different.
"is this her personality, her age or the MS that’s making her so belligerent? " As you say it is probably a combination. The fact that you are there helping speaks volumes about both of you. If the roles were reversed you may also be belligrent. I hope that you get to share the “joys of caring” and get enough time for yourself so that you can recharge your own batteries and continue to be there for your mum.
All the best
Mick

Maybe its time you stopped being NICE, and say it as it is. Your mum is actually being quite selfish i am sorry but i am a mother and i am 70 with MS and no way would i put my family through this angst. She is simply putting too much stress on you.

There are aids to get her out of bed. You have to put your foot down. talk to adult social services or OT and ask them to talk to her. she has accepted some help hasnt she. can she make her own meals, who washes her etc etc if she cant do itself then she needs help from someone and there is accepting help it just seems she is being picky what she is choosing. If she wont have help getting out of bed, then dont help her. Let her do it herself.

I sound mean but sometimes you have to be to be kind. Like i said i am a mum i have PPMS and if i couldnt get out of bed i would make sure i had the aids to do it. I would not want to put on my family. Your too good a daughter. My mum was 93 when she passed. she could barely walk up the stiars, we had the stair lift in the house from our dad, so we just had it serviced and told her to use it rather then fall. we left her to decide, and within a few days she was up and down on the lift loving it. we even caught her putting the hoover on the seat first to go upstairs lol.

so what i am saying is you can have the aid fitted and leave it there i am sure she will use it when no one is about. Your mum is too proud. but pride always comes before a fall.

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Thank you for the replies. They really help and I’m so appreciative for your perspectives and support.

Yesterday the OT delivered a fab new showerchair/commode. It’s so much more manoeuvrable than the old commode.

However last night at about 4am mum decided that she needed the loo and although she was wearing a night time pad and there’s a bed protector my dad tried to get her out of bed and on to the commode.

Long story short, mum ends up prone on the floor and dad has to wake us up to lift her back to bed because he can barely walk himself nevermind lifting mum from bed onto the commode in the middle of the night.

Both my brother and I have talked to mum about the night time situation and it always ends up in an argument. She only recently conceded to using the larger night time pads and that was a battle in itself and the decision was forced on her.

This situation is a struggle and she is an expert manipulator. She weilds the power of No to great effect.

I wish I could have a calm and reasoned conversation with her but it alway ends up with her crying and shouting at me to stop nagging her. She will do nothing to help us manage this situation and seems to be in denial of the effect it is having on us all.

This is a toxic environment and it has been for long time.

I am so sorry for this. I have a commode chair right by my bed. it cant move it has no wheels. Many moons ago i would get up at night and fall into furniture and it was felt it was not safe. so i have had my chair a long time. I have a grab rail in the bed so i can use that to get myself up and onto the chair (lid is taken off when i go to bed lol. I use it to do one of constant pees i have to do at night as i have a neurogenic bladder.

some of these incontinence pads are horrible i dont blame your mother for not wanted to wear one there is nothing more depressing then been wrapped up like a baby.

I use TENA Lady Silhouette Incontinence Pants. they are quite pretty and can be washed. I dont use them all the time only if i am having a bad bladder or bowl time.

I was given the showerchair/commode its useless in the shower as i have slipped off it when it was wet and nearly broke my leg, i hate it, as it moves to easily even on brake. my commode is discreet. it doesnt look like one. Its kind of difficult to accept that one has to use a potty at night. but needs must and i dont want to end up on the floor with broken hip.

You mum is fiercely indepedant but in being so she is making all your lives miserable, your mum is used to being the ALPHA in the house more so then your pops, and it is hard to loose control of the situation and frustrating too. she has no concept the damage she is doing to her family.

i really think for your sanity and your fathers health you should seek some social support or even your mum could do with talking to someone. I did i had a lady who came for several weeks and she was very helpful as i was getting very depressed over my MS and my life. i was in a very dark place. she helped me see i needed help, how much damage it could do to my family if i refused etc, so well i finally accepted i had MS and had to deal with its fallouts. i even lost my mum and my husband in the last few years which was really hard for me, and i am still trying to stay positive. i understand to some extent where you mum is coming from but she needs to see she is being slefish and ruining her family.

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