Donna from Oklahoma
My husband, Harry, was diagnosed with Parkinson's Disease three years ago when he was almost 79. It was a total surprise. For the first year there were small changes but during the second year some of the changes were obvious and more complicated. Christmas Eve of 2015 he began falling. About a month later he had a major fall and sustained several injuries. He spent five days in the hospital and then was sent to an assisted nursing home for 30 days for observation, therapy, and other help. We do not have Social Security nor did we have the major portion of Medicare. We found out that Harry had signed up for Medicare Part A while he was still working and it turned out to be a blessing for us. While we have Blue Cross the expense would have been prohibitive. I don't know what we would have done without Part A. It paid for, and still is paying, for physical, occupational, and speech therapy, along with an aide who comes once a week to help with bathing.
When Harry came home from the hospital he was no longer able to walk. Harry was given a wheelchair and a hospital bed. We placed the bed in the living room so he could be among the regular activities of life. I didn't want him put in a bedroom off by himself.
A physical therapist was called in to help him with walking but even I could tell it was never going to be something he'd ever be able to do again. After several months they switched him to an occupational therapist who helps him with upper body strength to help him move around better in the bed. At the beginning he had hallucinations such as seeing ants crawling on the ceiling, or thinking that an old friend had come to visit him. Some of his thinking was a little off but after a while with proper diet and therapy he was doing okay. He hasn't had hallucinations in several months.
Our occupational therapist looked into renting a Hoyer Lift to help get him out of bed and into a wheelchair. There was no way I could do it myself. Taking Harry to see his neurologist entailed having my son and his friend, who are both over 6 feet tall and who do weight training, help get Harry in and out of the car. My husband only weighs around 150-160 but it's total dead weight. He can't help himself to stand up and has no control. He is also incontinent and that presents another set of problems which I think I've handled pretty well.
While so much of what I've said sounds negative, I have to tell you that Harry has been the sweetest patient ever. He never complains. He's laid back, agreeable, seemingly happy, laughs a lot, compliments me constantly on the way I care for him and on the meals I fix him. I have heard horror stories from nurses and therapists who have told me how lucky I am to have a husband with such a good attitude. I can't imagine how difficult it would be to care for someone who yelled or complained all the time or were abusive.
We have had wonderful therapists and nurses. Every single person seems to care. They are upbeat and caring. They joke with Harry and make him laugh. They see him as a person - not just a patient. The occupational therapist I mentioned earlier also talked with her boss and had a form sent to me to fill out. Based on my answers we were able to stop paying rent on the wheelchair, the bed, and the Hoyer Lift. That saved us quite a bit of money each month.
I do not know what's ahead of us, but with the people from Home Health and the rest of our family, I feel we're going to be okay.