Let me say this: I’m not the first person to walk this particular journey toward Mordor. However, I believe every story is unique and has its own value. I’m sharing this because I want you to know mine. Why? You may be where I am, or I might be where you’ve been. If we don't listen to each other, we are doomed to die in silence.
As my father fights lymphoma, we’re fighting another disease on a second front.
If you’ve read some of my previous posts, you might recall I’ve discussed my mother’s fight against dementia. This is a battle that can never truly be won. It's a slow, daily decline toward an inevitable defeat. However, in recent days, my mother’s progression through the defined stages has accelerated beyond what I was prepared for. The signs are clear and unmistakable; she is in a frightening place from which there is no return.
There is much we can do to care for her. We love her unconditionally. She is safe. Our family sits and talks with each other about our fears and our general feelings of helplessness. Most days, we are reduced to watching her mind collapse in on itself. There is a part of her that knows this is happening. This may be the most tragic thing to witness. She is trying to hold on to her reality. “I can’t make sense of anything,” she says.
My mother no longer recognizes or knows who my father is. She thinks he is a man, a stranger, who has come to live in our house, sleep in her bed, and eat our food. She doesn’t understand how he knows so much about her. This unsettles her. If, as we tell her, he is her husband, she asks why she doesn’t remember living with him for the past fifty-five years. I don’t know, mother, I don’t know.
Pictures don’t seem to help. The doctors tell us these do little good. Yet, we try. Hers is a world of fear and suspicion. The man she sees in the pictures, she is convinced, is not the man living in the house. “This guy,” she calls him. Despite still seeming to recognize me as her son and my wife as her daughter-in-law, she does not believe or trust us. At other moments, she thinks my father to be my brother. Although I am an only child, she will ask, “Where are all the other children?”
The day will come when she no longer knows me. As her mind and memory fade right before my eyes, my identity is slipping away, little by little, each day. If my mother forgets who she is, then who am I? Some of my earliest memories are of being at my grandmother’s house and hearing people tell her, “You can tell he is Bettie’s son.”
It is breaking my heart to see her like this. I wish I could do something. There’s nothing to be done. Each day merges into the next. Morning comes again, and the same feeling of helplessness is there, as sure as the dawn follows night.
I wouldn’t wish this on anyone. We must die; obsolescence is part of human life. I understand this. What makes me angry is having a front-row seat to watch the slow, painful decline of someone who cared for me through crises big and small.
There are spaces for platitudes or inspiration. We are not in one of those places. My mother will not get better. Nothing about this situation is redeeming. It’s hell. I will not lie to myself or others. Watching someone who is physically healthy die a slow mental death is a special kind of torture. I use that last word deliberately.
No one should have to witness their loved ones dying like this. Yet, here we are, unable to do anything else. Now you know. This is my story. What’s yours? Please let me know in the comments section below. If there is any truth in this, it is that we are all in this together.
You are courageous and I’m feeling for you. 🫂
It’s been a little more than 22 years since my Mother passed, finally released from 10 years with that dementia decline demon.
My sister, a nurse and my Father cared for her everyday in her home. A well and a woe for her and family. When she didn’t recognize us I cried- and in this moment of the memory, am tender for hers and our suffering. I believe ( know) she no longer suffers it.
I think of a day not long before she passed, she sat up and started singing.
I think of how we were with her when she died.
I think of my father’s prayer, ‘what do I do now, Lord’
I feel her ‘there’ in that cloud
I see her when I look in the mirror.