New Member

Hi, I have just joined the forum. I have been caring on a more frequent basis for my Mum and Stepdad for the last 5 years and have felt that I needed someone to talk to on numerous occasions. My husband is very very supportive, but even he gets fed up of hearing about my problems and about my conflicting feelings about my role. My Mum has a chronic immunological illness, Systemic sclerosis, which affects different parts of her body; she had a colostomy 14 years ago which doesn’t function properly due to her illness, and we have constant hospital visits and she is longing to have some more surgery to try and improve her situation. Needless to say she is very up and down especially this time of the year. Both my Mum and Stepdad are in their late 80’s; he ignores Mum’s struggles as she keeps him at arm’s length, and has been living with her problems for over 40 years. My migraine headaches are more and more frequent, I now have chronic toothache which may be trigeminal neuralgia, am waiting for an MRI scan to show what is causing it. I have a number of other nagging problems too and I think they are all probably either caused or exacerbated by the worry and stress. My husband and I should be enjoying our retirement, but are unable to travel much as we are always on call, and I spend so much time sorting Mum and Stepdad out that my husband sometimes feels neglected and unable to get on with his life - he is in his mid-70’s and frustrated by wondering how long he has left to enjoy reasonable health and the ability to get on and enjoy his retirement. That is my story, and I would love to hear from others with some tips to staying sane, and coping!

Stop doing it all yourself! They need help from Social Service, you are their daughter, not slave.

Hello and welcome!

Have you requested a needs assessment or not? What is the nature of your mom’s disability? Physical or cognitive?

Hi thanks for your responses Thara and Bowling Bun. Mum and Stepdad are both mentally sharp (most of the time, unless Mum has been taking zapain for the pain, when she becomes a bit “foggy”), and she hasn’t had a needs assessment, I will look into that, thanks for the suggestion. As the daughter (with my brother living 4 hours drive away) I feel duty bound to do what I can for them. I try and find joy in what I can when I am feeling down, but I find it hard not to be thinking about them, their problems and what I can do to help improve things for them on a day to day basis, so that the times when I am not with them, my mind is always drifting back to their problems. I will work harder on trying to “switch off” for a while!
Thanks again.

STOP feeling duty bound, that was my mistake too. Have some counselling to get rid of this felling. After all if you lived further away they would have to manage somehow.
Don’t let them tell you what to do. You decide what you will do and let paid carers.
Once you get things sorted out, it’s like a release from prison. The realisation that you help them because you love them, not out of duty, you will do it with happy feet. Make sure you have a couple of days off a week too. Then they will appreciate you more. Remember you are daughter not slave!

Hi, thanks so much for your replies, it makes me feel that I am not alone, that there are others who are dealing with similar problems and have similar feelings about the situation we find ourselves in - it is helping me feel more positive, and to mentally take a step back and look at things more objectively, thank you :slight_smile:

My counsellor told me to be clear about priorities, son with LD’s needs had to come first as he couldn’t speak up for himself. Disabled mum could. She didn’t like this when I explained, but she had to agree.
Similarly, your daughter must come first. She has a right to a happy childhood, to holidays exclusively with her parents ONLY. A right to a quiet bedtime story. Think how this can be achieved.

I also understand what it means to be disabled. After a car accident I was in constant pain for five years, waking up to 13 time a night, using two sticks at times, yet still running a business to earn a living and supporting disabled mum and son. Happily I can now walk again pain free after knee replacements. We all hated me being disabled and widowed but I was determined to live the best life I could. I always want my boys to remember me as their mad crazy mum who lived the best life she could, rather than them think thank goodness we don’t have to put up with her anymore.