Stories from Caregivers: Rosemarie from SOUTH CAROLINA
SC
Rosemarie
FROM SOUTH CAROLINA
Guillain Barre Syndrome devoured my husband, Greg, in less than 24 hours, leaving him paralyzed from the neck down as of August 1, 2015. My name is Rosemarie, Greg's wife and sole caregiver. Greg is my rock. Greg was placed in Neuro ICU and immediately put on a ventilator as it was consuming his diaphragm and lungs, and his ability to breathe, then swallow. Once off the ventilator he moved into an acute facility for therapy that included speech, physical and occupational. Short term disability has authorized only until the 27th of September. I'm working with the doctors for the extension. Group health decided to take him out of acute rehab and into a sub-acute center, dropping therapy from 4 1/2 hours down to 75 minutes a day. Most people that develop this illness recover at about 95% with minor residuals. The other 5% have some type of permanent disability. Unfortunately there is no text book recovery time period with GBS as it just depends on how fast the individual's body regenerates the myelin surrounding the nerves. With that in mind, once our long term disability is applied for after short term runs out, his employer terminates his position. This is sad and scary. Greg is scared. I cannot imagine what it is like to lie in bed and not be able to move anything except your head. Not to be able to get up and go to the bathroom, not even to be able to hit that little call button to ask someone to get you up to go. It is heartbreaking for me. My days for the past six weeks have literally been to the facility as early as possible so he knows I am there for him. I scratch his itches, adjust his arms and legs, help the CNAs get him up and into the lift to transport him to therapy. I am there for therapy to encourage even the slightest movement in the pointer finger or a wiggle of his toes. Unfortunately we cannot even "eat" a meal together as he needs to be fed. Yes, the CNA will feed him but I am trying to keep some normalcy in our lives. Leaving to go home, alone, is horrible. Calls and cards are less and less. Errands someone says they'll run for me are forgotten. Medical bills are received long before the EOB comes in from the insurance company. I have little time to clean the house, take care of the yard or even cook for myself. If I could give anyone advice, give the caregiver a break and spend quality time with your friend or loved one. If you say you are going to do something, do it. Don't leave the caregiver hanging. Arrange to cover a therapy session, or be there for lunch or dinner to feed him or her. Give the caregiver a much needed break. Please and thanks.
