A new friend urged me to write something about the subject of watching a loved one fading away at the end of their life. I suspect it is something that many of my readers have experienced, or, unfortunately, may have to experience in the future.
This is a complex process. It is hard to accept the sudden loss of someone you love, but it is equally hard to accept the slow, agonizing decay and decline that comes with debilitating illnesses. I have lived long enough to have seen both kinds of loss. So, is it better to rip the Band-Aid off all at once? Or do you take it slowly?
Well, the issue here is that you don’t get to chose; God, Fate, the Universe, Randomness, or whatever you believe in, does the choosing for you. You just get to go along for the ride.
Since I have been dealing with the Long Goodbye, I can speak somewhat authoritatively on this subject. My Mother has been fighting Parkinson’s Disease for over 13 years now. It has been a remarkably courageous fight on her part, but she is not dealing with an Opponent whom she can never beat. She is now in late-stage Parkinson’s dementia, and the Fierce Rival has taken almost everything away from her.
As I sit with her now, watching her eyes shift onto hallucinatory objects and scenes, I am consistently amazed at how little of HER is still with us. She is/was an amazingly energetic, quick-witted human with a marvelous sense of humor, an unceasing sense of fashion and design, a high Intelligence Quotient, and the determination to move mountains. Now, as she sits helplessly in a wheel chair, unable to formulate the words that could communicate her thoughts, she seems to be NOT my Mother, after all. It’s like the announcement at the end of Elvis Presley’s concerts: Elvis has left the building. My Mother is occupied with scenarios we cannot see and events that could have occurred decades ago; her companions are ghosts of Christmases past. She cannot have conversations with me, or relate to anything I try to tell her about the present. She is not sure who I am anymore, but she seems to still regard me as someone close to her, someone she trusts. That is pretty much what I have left of HER.
The decline of the mind is terrible, and yet fascinating to watch. It hurts so much to see my Mother’s facile and curious mind become an unreachable field of erratic memories and haphazard thoughts loosely strung together by the neurons that are still firing. She no longer can assimilate current events or relationships. She recognizes people that are somehow familiar to her, yet she is never absolutely certain how she knows them. I become her sister, her friend, her acquaintance….but rarely anymore her daughter.
One of the hardest things for me to accept is that I cannot fix anything about this situation. I no longer have even the smallest sense of control over her health issues or her daily activities. Since I am, by nature, a caretaker personality, it is a struggle to admit that I am powerless now. I can fill out her menu, as I have done for many years; but I cannot be sure she will eat. I can make sure she has coordinated clean clothes, but I cannot be sure she will wear them. I can no longer know if she has a pain or an ache, because she doesn’t connect too much with her own well-being anymore. All I can do is trust the folks who take care of her, oversee her general condition, and pray for the Best to happen for her.
And what is “the Best”? Do we espouse the words of Dylan Thomas in his famous poem to his Father? Should we want our loved ones to “Rage against the dying of the light” anymore? Or would it be best for them to slip away from this reality with as little pain as possible? It is a stunning lesson and a questionable place to be, isn’t it? To learn that there might be things worse than that which we fear most: death? That perhaps living in a twilight where nothing is certain and no deep connections are left to anyone or anything we loved, might be worse?
For what makes us who we are, anyway? What defines an individual’s personhood? I think it is the interests we develop and cherish, the beings we love, and the choices we make. It is our ability to continue to learn, to laugh, to investigate, to model behavior through our values, and to share our love. When we lose all of these, who are we then?
I am not sure. But I know that my Mother is not the person she has been to me or to others for most of her full and interesting life. She is frail and incomprehensible. She is lost in a shadowy world where often she cannot be reached. I sincerely wish I didn’t have to see this , but I remember how hard she worked to raise me, and all the amazing things she did for me when I was growing up, and I cannot look away.(Surely taking me to the Beatles concert in 1966 and dealing with 25,000 screaming Beatlemaniacs is enough to warrant loyalty forever!) I cannot abandon the Good Ship Mother, as it struggles with the crashing waves and sinks slowly out of sight. I must keep my eyes on her until the end.