Forum

Mum with MS

My mums MS has got alot worse since the start of the year and her own mother dieing. I wondered if this can effect/ trigger MS more as it seems to be since then it has got a lot worse.

She has lost alot of weight, isnt eating much ( isnt hungry ) and isnt really doing anything in terms of exercises the physio gives her. We have got in a lot of walking aids, and tools to help in the kitchen which she isnt using.

She tends to stay in her room and watch TV all day, and only get up when she needs the toilet (using her walking aid). She went through a stage of crying constantly and now she laughs constantly…

I wondered if anybody had any advice or has been through this stage with anyone.

Many thanks,

J

Hello I am a dad with MS had it for several tears. Like your mum my parents have passed away. Like your mum, real name David spend all day, sat on my stool in the kitchen watching TV and am quite happy, do not eat much as I do not do anything to build up an appetite. Use walking aid to toilet as you mentioned. Cricket is on in a bit 20/20 blast, Kent spitfires so looking forward to watching it. Quite happy, do not worry, I tell my kids I am ok and not to worry. David xxx

,

Depression and grief are part of life, even without MS.

Your mum is in pain in her heart. Loosing her mum must have been such a shock for her. When i lost mine suddenly I never thought i would get past it. It spiralled my MS out of control. My mum was my life she was my constant. When i felt down and scared (even at my age i felt scared and needed my mum), I would be able to ring her. My treat was to visit her once a week my friend would drive me there it was about 30 minutes drove, now all i have to look forward too is a 30 minute drive to visit her grave where she is resting with my dad. That was 3 years ago and i still cant face that journey. I just want to curl up and cry.

then i lost my husband in 2017 another constant in my life.

I have no idea how i got through that.

Your mum needs a purpose to keep going. Was your nan reliant on her in anyway? Did your mum help her? All your mum can see right now is hopelessness. She lost her mother. You dont mention your dad? Is he not in the picture.

Picture it. Put yourself in her shoes. She has MS, she lost her mother a huge shock, she feels scared and alone she has nothing to get out of bed for?

Depression is a scary thing she is depressed.

You need to find a way of making her useful again. Maybe stop helping her you are giving her AIDS everything you give her just reminds her of how useless she is. Does that make sense?

Change the walking aids, and tools for the kitchen, for a treat at a spa, or having her nails done or a new hair do. Take her out if she can cope to the cinema the new Downton Abbey is on the circuit i bet she would love that.

Retail therapy. ‚Äúcome on mum we are going out and just take her out‚ÄĚ. I am not sure how old you are, but find her things to do. I take it you are younger so your mum cant be that old.

but dont give her AIDS, its just a reminder. she needs to feel useful.

I got through my husbands death because my daughters needed me, i have a dog, she needs me and 2 cats. they were the reason why i got up. I too would cry and laugh in appropriately which is actually believe it or not a weird emotional thing in MS.

Your mission is to cleverly take her out and make her feel she has a purpose outside her bedroom which has become her safe place.

gather the family round, and make a plan.

but get her out of the room, be stern with her loving and supportive. if you cant get her there a lots of people who will come to her and do her hair and nails. and pamper her a bit.

good luck your a loving kind daughter, your mum is in pain emotionally at the moment, and feels lost. i have been there. xxxxxxx

/////////////////////////////////////////

They will always worry hun. Mine do too, mum you need to go out more. No i dont lol. If i go out it leaves me exhausted and in pain. My eldest wants to take me to garden centre, my sister wants to take me to garden centre…i dont want to go there, it just reminds me of the beautiful garden i left behind, the hours i used to sit tending my plants, it makes me hugely depressed going there. I would rather sit through 2 hours watching HOUSE on amazon, then being dragged out ony to be reminded what i use to have.

I am not a cricket fan but i love trains, and my flat is a spit away from the main railway, and i get very excited when the steam trains are due to come through. My husband and I we both had a lot in common, trains, engineering, (real spitfires the magic of the Merlin engine), off road production car trailing, classic cars, fishing and when i was well travel.

I have had a wonderful life. Now i am in independent sheltered living as i couldnt cope with our large 3 bed house on my own after i lost my husband so suddenly. I have met a few people now who have the same interests, so i know now when the steam trains are due.

OMG I even went up the lounge the other day and chucked a few darts at a dart board and got 2 bullies straight away, and a 25 in the green circle lol, (shhh dont tell him but i was aiming for the 20 lol) and the old guy i was playing thought i had been playing years lol. Nope not for at least 40.

I have found people again.

I am a carer by nature, so when i make a Sunday lunch for my daughter i now make extra and feed one of the guys who is getting on and has diabetes and doesnt cook for himself enough, and he gets a Sunday roast now when my daughter is visiting. I find men in general will just DO lol.

Enjoy your cricket. But your kids cant help but worry over you. x

Very pleased to read your story, Crazy Chick, especially about trains. My dad use to be a train driver, started off as a cleaner of the engines, then a fireman and then a driver. Started off on steam, then diesel and finally electric. He took me a few times to watch the Flying Scotsman steam engine thundering through my local station, can still see it and hear it even though it was 60 years ago. Thanks for reminding me of the memory

1 Like

Morning David, omg she came through here a few months ago yards from where i live it was AMAZING i was crying with excitment, i know the thought of a 67 year old at the time getting emotional over a steam train lol, partly because i couldnt share it with my Mike.

Here you go enjoy

picture in case you cant open link.

https://www.stroudnewsandjournal.co.uk/news/17698752.flying-scotsman-to-pass-through-gloucestershire-this-weekend/

My dad lived in MInehead as a child and was brought up with the steam train there. when we were in the country (he was in the RAF so we travelled), we would always go for a ride on it, and dad had shares on it too. My nephew became a train driver when he grew up as a child it was his dream. It was a long process even getting accepted on the interview but he has been driving trains now for several years and loves every minute of it.

I am bless with my view, wish i had a fishing lake as well lol.

ah those were the days. I should have been a boy i have large hands and feet, and i love anything engineering and mechanical engine sounds. weird i know lol. BUT I hate the smell of it now oil and stuff would make me feel sick.

I so want to go on the orient express.

Can you speak to your Mum’s GP and or MS Nurse? It sounds like your Mum is depressed probably as a result of her Mum dying and the struggle of living with MS.

It is so difficult to motivate yourself when the struggle of simply getting up and getting dressed is a mammoth task. Keep trying, what about a picnic in her garden? Does she like watching movies? Get some popcorn or her favourite sweets and watch with her, even if it is in her bedroom. Sometime the little things mean so much.

Best wishes

Jan x