my wife has (msa) she requires 24/7 care. i am her care giver @ home.can anyone tell me how do i keep from falling apart. god it is so hard to watch the one u love go thru this.their is nothing i can do but watch.
I am in a similar situation with my wife of 42 years. She was diagnosed with Parkinson's in 2004 and re-diagnosed with MSA in 2006. She managed fairly well until 2007 when I started intermittently with caregivers. In 2009 aspiration pneumonia sent her to the hospital three times. In November we decided to insert a G-tube for all medicines and food; that seemed to relieve the pneumonia problems, but by 2010 she developed more mucous than we could extract with a yaunker. In Dec 2010 I decided to have a trach inserted to allow me to extract the mucous at home using a catheter - since that time she has been fairly stable.
She has a strong faith (as do I) - we are both Christians which has clearly helped us maintain. She is cognitive, so she understands when we talk with her or she watches the television. I have managed to keep her at home in a hospital bed with caregivers eight hours a day, every day since 2009. She uses medical equipment 24/7 although we can take her outside, on short car rides, to doctors offices, etc. in her motorized wheelchair.
HOW I MAINTAIN - with caregivers here I can participate in several activities outside the house. Church, gardening, a local service club and a local gardening program keep me thinking about things other than caring for my wife all the time. Without these, I would be much more susceptible to breaking down. BOTTOM LINE - allow yourself free time and fill you time with activities you enjoy.
Hope this helps.
There is a very strong on-line community on Facebook. The site established for caregivers is http://www.facebook.com/groups/168712409899563/. This site is extremely active and the caregivers share regularly.