Usually when I meet patients in homecare, they’ve either arrived back home after a brief hospital stay or “graduated” from inpatient rehab and are ready to get back to their old routines. Every now and then, I’ll meet a family whose loved one did not progress in the inpatient environment, but decided to return home anyway for their end-of-life care. This was the case with Jack and his mother.
When I arrived at the house, Jack greeted me at the door. Boxes were shoved toward the walls to make a skinny pathway inside. His mother’s third stroke left her totally dependent, so Jack moved from New York back into his childhood home.
“She can’t do anything, doesn’t even move her good side,” he said. “We’re not even sure how much time she has.” After her stroke she went from the hospital to a nursing home for rehab. She didn’t progress at all. A family member kept Jack updated while he tried to manage his life as a school administrator in New York, making frequent trips back and forth to North Carolina.
“When I found out she would have to stay in the nursing home I panicked,” he said. “I knew she would rather be home at the end of her life.” An only child, Jack joked that this was one time she couldn’t “ride him” about never getting married or starting a family – if he had those commitments, he probably wouldn’t have been able to take an early retirement and return home to help her.
His mother was unable to participate in any activity. She was basically confined to the bed or chair. I spent what little time we had training Jack on how to use a lift to get her from the bed to the wheelchair, and made sure he knew how to move her joints to prevent contractures. It was obvious what he really needed was a solid team of personal caregivers to help relieve him from time to time.
“Where’s all the help?” he asked. I had to tell him that Medicare wouldn’t pay for his mother’s personal care unless she qualified for a skilled service like homecare nursing or rehab, and even that would be short term. Her medical condition was stable enough that she didn’t require skilled services for very long, so she wouldn’t receive personal care, and she wasn’t ready for hospice. “So the thing I need the most is the thing I get the least,” he said. There was no debating this reality.
Sadly, it would have been easier for Jack to let his mother funnel through the system into long term care. That’s how the path is designed. If you want to change roads, you’re on your own to figure it out.
At the End of Life 
Michele
February 27, 2012
A noble act from Jack leads him down a path he did not expect it seems. One more reason lobby for better health care plans in the US. Carol you are calling the question. Thank you.
Karen
March 4, 2012
I agree with Michele–perhaps more flexible health care plans that include a choice to put part of the premiums toward a type of long term care insurance–can be used at home to provide personal care aides. So many families want their loved ones home and could make it work with a little outside assistance, but settle for placing them in nursing homes at much higher costs to all of us in the long run. A little help can go a long way. Thanks Carol for painting a clear picture of a dilemma that thousands face daily–and one that many of us will face with our loved ones….or ourselves in the future. Looking ahead and looking at the bigger picture.