rocmg
Distinguished member
- Joined
- Dec 29, 2008
- Messages
- 389
- Reason
- PALS
- Country
- UK
- State
- N/A
- City
- N/A
hi all. it has been a while since I posted. Just to recap for anyone I haven't met before, Mum was diagnosed Feb 2009. She went rapidly downhill in her first year. 14 months after diagnosis, my brother took his own life. For about 2 years after that we were all just existing, not living. Me, my mum and dad alone in our house. For the first couple years, even after my brother's death, myself and my dad did everything. I took her shopping, tried to give her things to look forward to, a quality of life. I haven't been an angel. With every new progression, I took it out on her. I shouted, begged pleaded with her to make it stop. Irrational? Yes. Unfair? Highly. Eventually I began to realise there's a limit to what you can give as a person. I thought I could give my all and make a difference. On the night she was diagnosed I promised her I would never leave her. I told her she would live her life through me. I have sacrificed a lot to have her and I don't want to let her go. I love her. I can't deal with this. I can't handle these strong emotions that over boil over into anger. I feel in many ways she has left her body. She is paralysed almost entirely, but has a little speech. Her neck cannot hold itself up to see around properly when she is in the wheelchair. She gets sore, her joints pulled from their sockets. We can't go out much anymore. Her breathing is still quite strong. She refuses the PEG and is getting by on 6-800 calories a day at present but I think her swallow is going. What do I do? I know she will starve to death before MND gets her. I've told her she is being cruel to me to expect me to have to watch that. I told her I'd have to put her into a hospital because watching her starve to death would break me. Should I be forcing her to have a PEG? I'm not ready to loose her. We get a lot of physical help now, with caregivers and sitters. Since she has been diagnosed she has been to respite once. It does my heart no good to walk away and leave her crying in a hospital. Please help, I don't know what to do. I'm so so sad.