My Mums MS after 20 years is now effecting her mentally

homelessskilledworker

Hi

Just had a sleepless night worrying about my mother who has MS.
She has now had MS for over 20 years, for the majority of the time it has only effected one of her legs. She has never complained and has got on with life, and has been very reluctant to take help from anyone, even me and my two sisters.

But in the last year she has gone downhill rapidly, and she is now unable to move at all, and spends most of her time confined to her chair.
After years of getting no help at all from anyone, which to be fair is my mothers fault in some ways for not wanting to put anyone out, including doctors and the state, we have now have an electric chair, a horizontal lift, widened doors, wet room etc etc, all this has happened in the last few months and at great expence.

The problem I am having along with my two sisters is an emotional one, which many people will find quite understandable. I have now moved close to home, I am down many as many times a week as I can, make meals etc. The problem we are having is so difficult to explain, but mainly concerns the relationship between my Mum and Dad. My Dad is quite Useless and has always been quite selfish. More than ever my Mum need my Dads assistance and help when we are not there, but she does not get the help she needs from Dad.

My Mum Has always been a tough old boot, but for the first time I am worried that this is starting to effect her mental state. I have tried approaching people such as social services, but I have just now totally given up on them.
We basically have some unique circumstances in our family that are so dificult to explain even on a board like this, what would probably be a massive help would be someone I could spend a few hours with explaining what I think is going on at my mothers home when her kids are not there. I now now think she is being seriously neglected by my Dad.

The one conversation I did have with social services when I explained the situation was basically one that could well tear the family apart, and to a degree there are people taken sides in all this, but on the whole myself and my two sisters stick together. Social services said that there was a thing in place where I could report my Mum as being under threat, something I might add I am close to doing.

This post is so difficult to write, there are pages and pages where I could go on about stuff that is very relevant, most basically about "the way my mum and dad are".

What I would give anything for right now is a meeting, chat, or any kind of person who I could sit with and poor my heart out about the fears I have with for my mother.

My Mum is now 74, she could well have a decade or two left(hopefully), but what I know is that as tough as she is, the way she is living at the moment will send her on a severe mental spriral.

Sorry if this is not easy to understand, but like so many things it just takes a few lines of muddled information which I think relevant to at least make a start in getting help.

My Mum is also a very difficult character in that you can do nothing for her, she does not want to put anyone out, which sounds great but adds to the problems myself and my sisters have, she is you classic Martyr.

Anyway, enough for now, thanks for reading if you have got this far.

soolin

I can't offer any useful advice, I'm sorry- I'm sure the regulars will be along later to suggest something.

I just didn't want to read and run though. It must be an incredibly difficult time for you.

mumonashoestring

Hi, sorry to hear you're having such a rough time. My mum has MS too, and like yours is very stubborn about admitting to needing more help.

Have you spoken to the MS Society? They offer support for sufferers and their family members, they have local centres, and there's a forum on their website that might be helpful.

rogerblack

Unfortunately, as I understand it, there are no really nice options.
If your mom does not agree that she is being 'abused' - then little can be done.
The 'at risk' system is basically for someone who is being severely abused - for example, not being fed, or taken care of after they have an accident.


You need to work out what desired and undesired outcomes would be.
Them both in a care home/supported housing/...
Him in prison (I have no idea what the level of this abuse is).
You moving in full time, ...

On the strictly benefits front.
Has she applied for attendance allowance - you can do this for her - entitling you to carers allowance if you care more than 35 hours a week, and have an income of less than 100/week after allowable expenses.

McKneff

In what way do you think your dad is 'neglecting' your mum then.

clemmatis

There may be little to be done short of reporting her as being under threat. But you could talk to Carers Trust, Carers UK and Age UK (as well as the MS Society) the first two have specialist forums

http://www.carers.org/

http://www.carersuk.org/

http://www.ageuk.org.uk/

pmlindyloo

We have a Vulnerable Adult team in Kent.

I don't know where you live but it might be worth googling to see if there is a similar service in your area.

You have my utmost sympathies as I, too, am going through a very difficult time with my Mum and am being given 'the run around' by all the agencies involved.

homelessskilledworker

mumonashoestring wrote: »

Hi, sorry to hear you're having such a rough time. My mum has MS too, and like yours is very stubborn about admitting to needing more help.

Have you spoken to the MS Society? They offer support for sufferers and their family members, they have local centres, and there's a forum on their website that might be helpful.

Hi Mumonashoestring

Had a lot of dealings with the MS society over the years, my sisters and myself have probably raised a fortune for them through runs and other stuff, but hardly got any help(mums fault again)
Have finally found them a great help in the last year.

homelessskilledworker

Hi All

The neglect side is very difficult to talk about on this forum, like many families there is a history that I am just unable to talk about on here for numerous reasons, I know it does not make it any easier for anyone on here to help.
What I will say that my Dad a sprightly 78 year old who has had anger problems over the years that I have personally never seen develop into violence with my mother, us kids yes.

I really cannot go into more detail, To a degree my Mums MS is being dealt with and we are all there for her and have excepted it, my big worry now is her mental state. I have no idea who to approach on this subject, I am even thinking about chatting to my own doctor about it.

homelessskilledworker

rogerblack wrote: »

Unfortunately, as I understand it, there are no really nice options.
If your mom does not agree that she is being 'abused' - then little can be done.
The 'at risk' system is basically for someone who is being severely abused - for example, not being fed, or taken care of after they have an accident.


You need to work out what desired and undesired outcomes would be.
Them both in a care home/supported housing/...
Him in prison (I have no idea what the level of this abuse is).
You moving in full time, ...

On the strictly benefits front.
Has she applied for attendance allowance - you can do this for her - entitling you to carers allowance if you care more than 35 hours a week, and have an income of less than 100/week after allowable expenses.

Hi Roger

On the money side we are personally ok, it is not a walk in the park, but it is not the biggest issue here.

pmlindyloo

For some reason I don't seem to be able to quote your last post.

I think that talking to your own doctor might be a good idea but they usually have only so much time to give so may only suggest getting in contact with Social Services or some similar orgainsation. (not putting you off doing it but jsut a 'heads up'.)

Reading between the lines (and please forgive me if I'm way off the mark) you seem to be saying that it's your mum and dad's relationship that is the problem and that the fact that your mum has become more of a 'sitting target' than before. Perhaps your mum has been able to 'cope' with your dad before in her own way, but now you see her as being more vulnerable because of her illness.

Am I close?