Editor’s Note: In November 2020, Spectrum Health Voices featured a post inspired by a plaintive social media post shared by Diane, a daughter and a caregiver. November is National Caregiver Month and Diane’s powerful words painted a vivid picture of the challenges of caregiving. Diane’s mother passed away last month, and this November, Diane reflects on her caregiving journey. As you read her heartfelt words, please remember that no caregiver is alone: Spectrum Health is here to help you as you help a loved one.
The caregiving journey I embarked on without knowing where I was going, recently, finally, and suddenly, reached its destination.
My mother died this past October, at the age of 92. We had lived together for 31 ½ years since she had given me a home after the breakup of my marriage. We shared a house and so much more, not always harmoniously, but never without forgiveness and friendship, because we realized the refuge we had in each other.
Hoping she would live a long life, it was always my intention to be my mom’s caregiver, a natural reciprocation of all she had done for me. That objective wasn’t much of a sacrifice while she could still be left alone, walk, read, and write out her favorite quotes, draw and paint, sing, play cards, make chicken soup, feed the kitties and watch their TV—the birds outside on the feeders—as happily as Wheel of Fortune and Jeopardy on our Samsung 16” screen. Even when she had to use a cane, then a walker, eventually a wheelchair, was incontinent and needed help showering, she was unchanged in her mind and heart. She continued to enjoy talking about her past, politics, nature, and old-time movie stars, with an appetite for good food and the flavors of life in general.
When the spells of delirium began, my mom’s limitations increased and so did the restrictions on my life. In the last few years, she became bedridden and blind. The delirium accused me of awful things and sometimes pulled me into its insanity. When she wasn’t delusional, she was more demanding than companionable, unrecognizable from the woman who was so enduring, a widow for 35 years, the mother I admired, the friend I always counted on.
Sometimes I would think, you’ll regret being angry with her, saying what you did, and taking time for yourself while it was running out with her.
The journey was a long one, especially as it went through a succession of dark tunnels, misunderstanding, resentment, and exhaustion traveling with us. There were too many times I wanted to pull the alarm so it would stop, no matter a desperate, screeching stop as long as I could get off. I also knew I couldn’t do that and on and on we went, as it felt, further and further from any chance of reviving the unconditional love between us.
Then the journey took a turn. It happened in the early hours of a Sunday morning while I was sleeping, so I didn’t realize until I woke my mom and she could hardly swallow or speak. She had lost so much along the way, but the ability to express herself verbally was the worst. Once, trying to say something to me that I just couldn’t understand, she wept more intensely than I had seen her do over any of her other disabilities.
When the end came, despite deep sadness, there was a light at the end of the tunnel, all those tunnels. For my mom it was the light of her spirit lifting out of her useless body to begin a journey I could not, did not want to, make yet.
For me, what was illuminated was my life as I had to go on with it, switching back to the platform of myself, the profound gift that, through the best and the worst, my mother had given me.
I have walked that long road to freedom. I have tried not to falter; I have made missteps along the way. But I have discovered the secret that after climbing a great hill, one only finds that there are many more hills to climb. I have taken a moment here to rest, to steal a view of the glorious vista that surrounds me, to look back on the distance I have come. But I can only rest for a moment, for with freedom come responsibilities, and I dare not linger, for my long walk is not ended.
~ Nelson Mandela from his autobiography, Long Walk to Freedom
Guest Blogger and Daughter