Help

Hello, Would love some advise please. My mum has M&S and has done for around 16 years now. She doesn’t have any carers so between myself and her partner we care. As time goes on her ms is taking over. I work full time and a single partner however there for her as much as I can. It’s now got to a point I’m struggling to cope with everything which I feel bad for as I can only imagine what my mum must be feeling. However the main problem at the minute is the way my mum is feeling … almost every day now she cries that she can’t do it anymore and she doesn’t want to live the way she is anymore and it’s becoming really difficult and upsetting to hear. I tell her all the time that she has a daughter partner and granddaughter who needs her but she just can’t see it. All she can see is that she’s in the way and causing problems for everyone else. Is anyone in this situation and if so how can I help her stop feeling this way ? Many thanks

to me it sounds like your mum needs an outsider to talk to.

has she any friends from way back?

if so, it could be time to rekindle the friendship.

maybe an outside carer to supplement the care she is getting from you and her partner.

i just feel that the pressure you’re under needs to be addressed.

i have just rekindled a friendship from primary school and we are meeting for lunch next friday.

hope i haven’t spoken out of turn.

Hi, not out off turn it’s actually what I hear from other people. She has friends that go way back however I don’t think she actually says how it is … she’s a very proud and stubborn person so she won’t admit she needs the help and still wants to do the things she used to which I get… the impression I get is that if she does it’s like it’s admitting defeat but it’s not giving her quality of life …i can cope with that because I can help but with the way she is feeling atm it’s out of my comfort zone and I don’t know how to stop her feeling that way… I wish she would talk to other people with ms but she doesn’t as I think that will help her that she’s not on her own. I’m at a loss

what about an outside carer then?

i had an 81 year old friend who was lonely.

my nephew’s ex had just started a cleaning business so i told the elderly lady about her and she asked her to come and clean for her.

they adored each other.

myra couldn’t wait for wednesdays when lisa came round.

i meant to say that an outside carer could be someone to chat to and company for your mum.

I understand completely from both sides but mainly from you mams side. I’ve had a huge relapse and I’m struggling to cope with how I’m feeling emotionally and physically . The desperate need to not be a burden on my family eats away at me every day and it’s really hard to lose that independence without losing your mind too. I try and hide my pain from my family because they never chose this and it’s not fair on them to deal with me. But a hug from my children and them telling me it’s OK to not be OK helps for a little while. Although I’m currently in the same frame of mind as it seems ur mam is and I feel like it’s never going to get better, sites like this really do help. It’s just good to know that km not the only one feeling like this. Does ur mam use this site?

Thank you for your message, it helps me to no that my mum is not on her own as I can only imagine how it feels. She’s not on any group which I say all the time i think would really help her. She also feels like she is a burden but she’s not I would do anything I can to help I wouldn’t be where I am without her and I hope you don’t mind me saying I’m sure your family feel the same. She’s also a massive support with me and my daughter but unfortunately can’t see it. Maybe a day out doing something she likes may help but I don’t want to do something she won’t feel comfortable with.

She definitely needs to speak to someone may be someone who she can relate to it’s just trying to get her to do it :frowning: … I feel she thinks like she’s on her own

why don’t you word it not as an invitation to go out but as a request for her help.

for example if she has always been good at choosing clothes ask her advice when you next go shopping.

or ask her to show you how to make her lemon drizzle cake.

wish you both well xx

I am not sure how this website works, but I feel as if I will feel better mentally if I let go of the distress built inside my brain. My father was diagnosed in 2012. His disease has progressed and now he barely has any balance while walking and is unable to jump in place or run. I have been in an immense amount of heartache and have become sort of desensitized by his up and down behavior. He is very aggressive one day and the next he expects our family to go on with our lives as if nothing ever occurred the night before. It is becoming very hard for me to deal with hence the fact that I am trying to understand that this is not his true character nor does he mean any malice. The way he reacts to things is violent sometimes and almost scary. Early this year we ran into a situation where I felt the need to get him help. He did well in the three days of staying in the facility… But the disease is gruesome and almost harder on the family than the actual person battling it. I don’t know who to talk to or what to say. For years I have been trying to paint the prettiest picture but it turns out that my heart is at the edge of the unknowing if i should take anything personal. I have become so used to the mistreatment and heartache. I wish that I could take it all away.

I love him so much but this is so hard.

Your post highlights the broader impact of significant illness. Each of us responds to awful circumstances in different ways. I think you need to ask for support. I can understand bursts of incandescent rage but I realise that I need to consciously manage my response so that I do not waste valuable energy and do not impact on others. Try to speak with a medical professional like GP or MS nurse if possible.

Good luck