My precious mother died a few weeks ago after a heroic battle with dementia.
I say that her battle was heroic because she fought against her limitations as best she could right up to the end. I walked beside her all the long way down. She never stopped being the loving, good, decent and brave woman she had always been.
The nurses loved her. The other patients coddled her. And I adored her with all my heart.
Dementia is a thief that takes away a person’s memory. But it doesn’t take away the person. They are still there, inside the layers of confusion and forgetting, whole and entire, utterly and completely themselves.
Everyone I know, including me, dreads the thought of ending their lives in the fog of forgetting and unknowing that is dementia. Mama feared dementia all her life. When the forgetting and confusion reached a certain point, she grieved the loss and feared where it was taking her.
The only thing I ever did that made her really angry and bitter toward me was when I took away her car. Mama drove hundreds of miles on her own right up into her mid 80s. In her late 80s, she still drove 40 or 50 miles a day and thought nothing of it. Then, the dementia hacked at her ability to take in all the bits of information that a driver has to compute every second they are behind the wheel.
To be honest, I would have let her drive longer if the only person she was in danger of hurting was herself. I felt she was still capable of making that decision. I took away her car to protect other people.
It was one of the hardest things Mama had to do, giving up her freedom to come and go as she pleased. For years after I took her car, she accused me of “stealing” it. The only thing that made her stop was the dementia itself. In time, she forgot the car.
Dementia is a thief and a cad. It steals good years when people could be living and loving and giving to their families and communities and turns them into years of ever-increasing dependence. But dementia also has it kindness.
People who suffer dementia come to the point where they don’t know that they don’t know. After that, their suffering is over. All the things that they would have regarded with humiliation and a feeling of degradation — the diapers, having someone else dress them, playing with trucks and Legos, dribbling food and forgetting, forgetting, forgetting — just become life.
Anyone who says that people with advanced dementia “suffer” has not spent time with people with advanced dementia. After dinner, in the evenings when they’re having coloring time, they laugh and talk and compare their drawings with each other.
During activities, they grow silent and respectful when the director reads the Bible aloud to them. Watching people with advanced dementia respond to the Divine is something I learned from and was touched by. Their brains are failing, but their souls are intact.
I visited Mama often during afternoon activities. I played sit-down wheelchair kick ball, I listened to the back and forth with the activities director (who is a deeply good woman) and I smiled at the jokes that the dementia patients told.
These people were in the dementia ward for advanced cases. They were the ones that the Dutch Court has decided it is Ok to kill with an act of medical murder known as euthanasia. Their “suffering” is the excuse for this.
The court ruled that doctors could euthanize patients with dementia if the patient had signed an advanced directive saying this is what they wanted. In other words, if someone who was on the other side of dementia, regarding it with the dread that Mama felt back when her mind was sound, said, in writing, “I’d rather be dead,” medical people could act on that old wish and kill them.
A lot of people say things like “I’d rather be dead” when they contemplate dementia as a possible fate. But I can tell you that the dementia patients themselves don’t feel that way. They could never articulate this for themselves, but living through dementia is still living. Your brain suffers damage of one sort or another and stops working as it should. But you are still yourself, and your life still matters. The brain of a dementia patient may be damaged, but their humanity is intact.
I say this with an informed voice. As I said, I’ve sat beside my Mama during her afternoon activities, also her breakfast and when she was asleep at night. I have also been there in the evenings when the dementia does its worst and the dementia ward rocks.
After supper and before bed there are a couple of hours when dementia locks on hard. Those are the times when modest and dignified men and women strip off their clothes down to the nude, when the same woman who played kickball a few hours before, gets down on the floor and crawls, and another woman pushes a chair slowly across the floor until it comes against a wall and then keeps pushing until someone stops her. Those are the hours when patients stand en masse around the nurses station, asking over and over where their wives, husbands, sons and daughters are.
Dementia at its worst would be humiliating to a person with a working brain. But when dementia is at its worst, it is not afflicting a person with a working brain. These patients may experience some degree of inner turmoil, but they are not in pain. They forget these things as they are doing them. It is not humiliating or degrading to them.
The worst of dementia comes at the end, when the brain stops supporting basic life functions such as swallowing properly. But even then, the person with dementia does not suffer. They simply begin to die in a slow biological swirl down.
Dementia causes suffering. In the beginning, the person who has dementia knows it and fears and grieves what is happening to them. They know when they lose their car or have to move into the home of a child and they grieve because of it.
But after a time, they stop knowing and understanding what is happening. They forget that they can’t remember. And they become happy again like little children. They play games, play dress up, participate in activities and are as loving and sweet, as ornery and quick-tempered, as toddlers.
All they need is to be cuddled and loved and cared for. They need rigid stability and peaceful surroundings. Then they will be happy.
The suffering at this point is all on us. The people who care for people with advanced dementia suffer. The people who actually have the advanced dementia are happy in their world of the everlasting now.
We are often told to “live in the now.” Well, that is exactly what people with advanced dementia do. They do not anticipate. They do not remember. They live in each moment as it comes.
I’ve written many, many times against the atrocity of murdering people because they cannot remember. We call this euthanizing people with advanced dementia, and pretty it up with the conceit that we are “putting them out of their suffering.” But all we’re really doing is putting ourselves out of our suffering. We are sparing ourselves the necessity of caring for and loving our precious frail elderly people by murdering them, instead.
The end result of this selfishness writ largest is the murder of our own souls. We think we are killing them, but in truth we are destroying ourselves, killing our own humanity. We are depriving ourselves of the opportunity to be fully and completely human as only those who love and suffer for love can be.
I don’t regret one moment I spent caring for my Mama. My only regrets are that I didn’t do more. In the end, when it’s all said and done, those memories of your parents as babies again may very well be among your most precious remembrances of them.
The idea that we should murder our parents and grandparents rather than love and care for them is incomprehensible to me. How can anyone think this is a kindness? What moral sophistry could possibly make this seem right and good?
I am also appalled to the core by the bloodthirsty commentary coming from so-called pro-life people in this country these past few weeks about putting the economy ahead of the lives of our elderly and those with secondary conditions. Euthanasia by neglect and indifference is euthanasia. It is murder, plain and simple.
What is wrong with us that we would think these things are an answer to anything?
It’s taken me a while to write this. It is painful to write. It hurts all the way through to think on these things.
Euthanasia is medical murder. The claims that advanced dementia patients suffer unbearably are lies. If we care enough to care for people, to provide for and love them to the end, we will find that the only pain is ours, not theirs. And when we stand beside their graves and pray for their sweet souls, the memory of that pain will not be pain, but treasure.