I’m new to the forum and would like to chat to other carers about how to manage stress as this is becoming an increasing problem for me.
I’ve been caring for my husband all our married life really (35 years): he has muscular dystrophy and has been a wheelchair user for the last 25-20 years. What I find hard is not the caring for him but the bad moods, nastiness and general awfulness he experiences as he hates being disabled so much. Inevitably it affects me. I hate moaning like this because I know other carers have much more difficult situations to contend with but I’m so tired of it.
Just to communicate with someone else in a similar position would help.
Thanks for reading this.
Liz
I’ve been a carer for over 40 years, since my son was brain damaged at birth.
I used to be Superwoman, as well as caring I studied for am Honours degree, ran a business, a national club, and as if that wasn’t enough, most weekends we would be at a steam rally with my husband’s engine.
All went well until I was diagnosed with kidney cancer, had major surgery, found my husband dead in bed, and was nearly killed in a head on smash - all within 2 years!
Now I’m 70. How I long for my old energy, but It’s gone forever.
I suspect you are simply burned out.
Your husband should be doing everything to make the caring role easier, not being nasty to you!
When did you last have a proper break from caring? A two week holiday in the sun?
It’s time you made a stand.
Start by recording his nastiness on your phone, and playing it back to him later and ask if he feels it’s acceptable. It isn’t. Actually, it’s domestic abuse!
Ask Social Services for a Carers Assessment, to be done away from home.
No one can be forced to care, even a wife for a husband.
Hello Liz
I also care for my husband who has congenital muscular dystrophy. He now uses a wheelchair outside the home. It is very hard watching the decline & the steadily increasing workload. Please feel free to private message me if you’d like to chat.
Hi,
Thanks for your replies. It’s helpful to read about others in this situation.
Seaside Deb- I would like to chat but don’t know how to send a private message, I’m new to this!
It would be good to chat to someone else who has a partner with MD.
Liz
Hi Liz. At the top right of your screen you’ll see “Notifications” and “Private Messages.” Click on Private Messages and you’ll see what your choices are.
Alternatively you can click on the conversation icon under SeasideDeb’s user name which will open a private message box ready for you to type your message. You’ll need to set your preferences for receiving replies etc - you can do this via the Board Preferences tab after you’ve opened the private messages area.
Screenshot below indicates location of the Private Messages icon and the conversation icon
Dear Liz
Firstly welcome to our forum, you’ve definitely come to the right place to connect with other carers who will understand what you’re going through.
We are also running weekly online meetups where carers can come together, chat and share information and advice and support each other. If you’re interested in joining us please click on the link below which will take you to our registration page, the sessions are informal and run every Monday usually in the afternoon. There’s no pressure to share anything you’re not comfortable with Liz and it’s a great way to connect with other carers.
https://www.carersuk.org/help-and-advice/get-support/online-meetups
with best wishes
Ingrid
