Over the last year and a half I have been included in decision making processes that most American adults go through at twice my age — choosing care for the elderly and dying. It is a terrible position to be in. One wracked with guilt, shame, loneliness, and grief. It’s a separating position to be sure.
Choosing outside care ultimately means that you are not the one providing for your loved one. In some moments your decision might be played off as survival — the ability to provide for your immediate family or to live your life, in other moments the decision seems like selfishness. No matter what you do there is always an opportunity cost, a loss.
These choices are hard. I don’t have answers. But I have a view of loss that I would like to share with you in hopes that you can make different decisions.
These pictures are of my grandmother Dorothy. She lost her husband around 2001 and a few years later she checked herself into an assisted care facility. She has been in assisted care for over 10 years at the time of writing this. Currently she is in a facility for Dementia & Alzheimer’s patients. Dorothy no longer remembers who I am, what year it is, or to my best guess much of anything beyond the 1980’s.
Everyday Dorothy receives care and is surrounded by people in the facility, but she is alone caught in her own world. So much so that when I show up with an ice cream for Dorothy to eat she doesn’t understand that it’s for her, or that there’s a spoon in it, or that I’m her grandson, or that she’s been alone for a week.
The situation is terrible. Her memory is growing faint, much of it lost altogether. But what’s worse is that I am losing the ability to be with her, talk with her, and know her. This is travesty.
Before her decline, the facilities, and the diseases, Dorothy lived a full life. She is now 91. Let me share a little bit of her life that I know.
Dorothy was part of the ‘speeders’ in high school, graduating at just 16 years old. She lived through the Great Depression, raised two boys, and worked outside the home during a time when most women didn’t. Dorothy lived during much of the modern history that is now being taught in schools.
From a young Dorothy had pride in her alma matter — I found a football program where she religiously recorded the scores of the Friday games. She loved poetry and would often quote The Raven by Poe. She was married three times, divorced once, unfortunately surviving the other two. In more recent times, I would describe her demeanor as the Queen of England, she loved to be pampered. Dorothy also loves company — a socialite in the 1950’s — now because she is losing her memory, a bright smile will jump to her face if she recognizes she is receiving attention. She is now, in many ways, childlike.
As I write this what haunts me is that most of my last 20 years with her are forgotten. I have two paragraphs summing up her life. This is true loss.
So my encouragement to you is that when you choose care, you remain an active participant in your loved one’s life. Please question and document, write, record, photograph and share. Their lives visited are lessons learned. Their lives shared bring the fruits of compassion, love, empathy, and understanding.
I would love to hear stories of your loved ones, see pictures, and share in your moments. Feel free to shoot me an email at sethnenstiel [at] gmail [dot] com. Or get in touch by clicking here.