Mom broke her hip. I know this is starting to sound like a pattern in my annual blog posts: One Year Ago Today, Two Years Ago Today, Three Years Ago Today and now we are at 1,460 days since life as we knew it turned upside-down. It was on a hot Friday the 13th. Mom tried to follow me into the kitchen for a glass of juice and tripped on Toby (our Boston terrier). Now I circle the date on each new calendar. It’s not like I’m trying to commemorate the event. It just helps put the passage of time into a measurable perspective.
No one thought Mom would live this long. Usually patients with Alzheimer’s do not survive for four years after breaking a hip . They just can’t keep up with the necessary rehabilitation, especially after the effects of anesthesia and long hours in bed. Mom gave it her best but lost the battle as her legs started to contract and she became confined to a hospital bed in the living room. The usually trajectory after a broken hip includes pneumonia, bed sores or infections that the patient ultimately succumbs to. Fortunately, we avoided all of those complications by constantly shifting her weight in bed and getting her up in a wheel chair twice a day with the aide of a Hoyer lift. Most dementia patients end up in a nursing home after a crippling fall. I believe Mom’s longevity comes from remaining in her home which provides her with one on one care and a sense of wellbeing for her. As for the caregiver, it takes its toll.
What’s changed in four years? Aside from greying hair and a tired expression on my face, there’s an unspoken sense of abandonment . In the beginning, Mom was put on hospice and I had help coming in six mornings a week. A nurse checked Mom’s vital signs weekly and emergency help was just a phone call away on a refrigerator magnet. This past April, I was abruptly given notice that Mom had been “discharged” from hospice after three and a half years. The reason? She had reached a “plateau” in her decline. So now I’m left to fend for myself or hire help when I can. That’s easier said than done. Just because someone is scheduled to show up, doesn’t mean that they will.
Take this morning for example. My brother was in town for his birthday and we’d planned to have lunch together before putting him on the train back to Washington DC. At 8:30am, the phone rang from the agency. I picked up and said “Oh please don’t tell me Sherelle has called out again”. Sure enough, she had for the fourth time in six weeks (and she only comes once a week!). So one can almost count on any plans you make will likely be cancelled.
The good news is that Medicare says she’s doing better and there’s no threat of eminent death. In reality, we know it could still happen on any given day and we will now have to manage on our own. A friend who’s husband had a long fight with cancer told me a similar story. After three and a half years, he had exhausted the system as far as Medicare was concerned and he was discharged. Two weeks later, he died in his home with no assistance except from his wife. It’s a crazy system. The closer you get to the end of life, the harder it is to receive help if you’ve outlived your prognosis. Lesson learned: Dying slowly is not covered!