MSA

[Avis]

My husband has Multi System Atrophy which is a brain disease similar to Motor Neurone disease but with dementia. He is incontinent and has started defecating all over the toilet and in the shower. He wears pull ups but wets the bed every night. He can't walk more than a few paces, imagines he sees people in the house, wants to go home and undresses in the lounge room. Lately he has started putting his clothes on in the wrong order on the days he is motivated to dress himself. He can't find his way around the house on the few days that he can use his walker and he sleeps for hours and hours. I am constantly cleaning after him, having holes in the wall patched because he has fallen and last week he fell through a glass table as he forgets he can't walk, stands, staggers and falls. I am very tired and quite lonely. The doctor says he is only in the early stages so I dread how far we have to go.
So nice to be able to vent to people with similar problems.

 

[Cat27]

Welcome to DTP @Avis.
I’m so glad you feel you can vent here. Please keep posting as you’ll get lots of support here.

 

[Louise7]

It's not surprising that you are very tired with all that you have to do. Are you getting some help and support, both to help with the caring and to give yourself a break?

 

[nellbelles]

Hello @Avis and welcome to DTP
Are you aware that you can ask SS For a needs assessment for your husband and a carers assessment for yourself?
Is your husband in receipt of AA? Which could help pay for extra help with his care.
I hope now you have found the forum you will continue to post for support

 

[Rosserk]

My husband has Multi System Atrophy which is a brain disease similar to Motor Neurone disease but with dementia. He is incontinent and has started defecating all over the toilet and in the shower. He wears pull ups but wets the bed every night. He can't walk more than a few paces, imagines he sees people in the house, wants to go home and undresses in the lounge room. Lately he has started putting his clothes on in the wrong order on the days he is motivated to dress himself. He can't find his way around the house on the few days that he can use his walker and he sleeps for hours and hours. I am constantly cleaning after him, having holes in the wall patched because he has fallen and last week he fell through a glass table as he forgets he can't walk, stands, staggers and falls. I am very tired and quite lonely. The doctor says he is only in the early stages so I dread how far we have to go.
So nice to be able to vent to people with similar problems.

Oh my goodness things must be extremely difficult for you and of course your poor husband.

Your post makes me feel very humble and ashamed that I complain about how hard it is looking after my mum who is nowhere near as many problems to deal with as you and your husband. I can’t imagine how difficult it must be and it’s obvious you need help and as soon as possible.

I can’t offer any practical advice but can send bigs hugs and prayers. Keep posting practical advice from more experienced members will be along soon xx

 

[Sarasa]

@Avis, that sounds very hard. Have you contacted Social Services etc? I know someone whose husband has motor neurone disease and they have quite a lot of help coming in, including continuing health care. At the very least its worth exploring what help there is out there.

 

[Olliebeak]

It does not sound like early stages!?

I agree with the others about contacting SS. It sounds like you really need some help.

 

[jenniferjean]

It does not sound like early stages!?

My thoughts exactly. @Avis does you doctor know all that you are having to deal with? I think you really do need some help.