The last time I saw Martha everything seemed status quo even though it had been a month since my last visit. Her head was resting comfortably on a pillow, mouth was wide open as usual and she was sound asleep. She was usually sleeping when I arrived and when I left, and her husband said she now spent much of her time asleep. It was getting more difficult to awaken her for meals. That was the sign we’d been waiting for.
Martha has been uncommunicative for 5 years, in hospice care for 4 years, and in a vegetative state for about a year. She’d been living with “end stage Alzheimer’s Disease” during those same 4 years and living with the disease for about 11. Doctors said she’s the first person they’d met to live “like that” for so long. Most patients die sooner. For some reason she’d been hanging on.
Martha finally died several days ago and I seemed to be the only one relieved – for her sake and for her husband’s who’s devoted the last 11 years of his life to her care.
Some background …
As a hospice companion volunteer I function as an impartial friend to the dying and to the family who cares for them. The adage “when a person is sick a family is sick” is true. Illness can drive a family apart because of a shared history – or together as a united force. In Martha’s case the bond grew tighter.
When she was diagnosed her husband promised to take care of her until the end, as she did for her mother who finally succumbed to Alzheimer’s years earlier. He took that pledge seriously, and literally, essentially becoming hostage to his house unless he could find someone to “sit” for her on occasion. That’s where I came in. Three years ago I became that person who “babysat” as he called it.
Over time hubby and I have become fast friends, visiting together before and after he ran his errands. Eventually I persuaded him to include others in his life, people vibrant and leading healthy lives. Hubby started going to Bingo at the senior center during my weekly visits. He made friends there. Continued gentle prodding inspired him to invite them over during the week for pizza and card games. Slowly the twinkle returned to his eyes, he laughed again and regaled me with stories from his week’s events. I got him books to read, movies to watch and together we went through his photo albums of happier days when Martha was his wife and not the living corpse in the bedroom. He giggled about a couple of the “old ladies” at the senior center seemingly flirting with him just because he helped them on and off with their coats. He was starting to feel like a man again – all the while – feeding, bathing, toileting, dressing, transferring and giving meds to his wife in the next room. And he spoke so lovingly to her – calling her his pet names, rubbing her cheek, whispering in her ear as though they were sharing a secret from yesterday. She laid in bed, mouth wide open and eyes staring blankly, not moving a muscle – while her chest went up and down with each breath. “She knows it’s me,” he always said, “I can tell by the look in her eyes.” Really? It looked like the same blank stare I saw each time I was there.
Probably two – three weeks ago Martha turned a corner. She slept almost all the time and her breathing became shallower. Then she refused the spoon he continually tried to put in her mouth with food. Then she wouldn’t take the thickened water.
And then – finally – she died.
At Martha’s memorial service hubby was drowning in his sorrow, unable to contain the tears that insistently ran down his face. And his grief remains intense today.
His world has a gaping hole in it. There’s nothing he has to do and nobody who needs his care. Martha isn’t there anymore. He’s not sure what he’s going to do.
So my relief for her peace and for his freedom is misguided. While she is, hopefully, at peace he’s not yet free. Love’s tentacles run deep.
I have much to learn. And that’s why I do hospice work.
actthreedotnet 