08/18/2014 08:01 am ET Updated Dec 06, 2017

The Slow Descent

I open the door to step back into the room, and he is already asleep again. Sitting in the chair by his bed. The effort to get dressed and move to the chair was too much. He is spent.

His lungs are filled with fluid, and he no longer has the physical strength to cough it up. They are giving him medicine designed to help, and he tries, but he just can't get it out anymore.

The coughing fits turn him bright red and leave him without breath. It is excruciating to watch and sadly, I am aware, only a preview of what is to come.

I wake him gently. "Dad, let's get you back into bed. You need to rest."

He cannot sit up, get out of bed, or dress without assistance. He can only walk for short distances, his gait unsteady and his feet shuffling, not lifting off the floor. He must be accompanied to protect against falls. He has had several and we are very lucky he has not been seriously hurt.

I'm getting more used to it now. It's not so shocking to see him this way. To be the one who has to do things for him. It still disturbs me, and I feel inadequate. But I'm not afraid or embarrassed to try to help him.

I explain he would be more comfortable in the bed, and he agrees, but says he can't do it on his own. I tell him I will help.

I place my hands firmly under his armpits and lift his frail body out of the chair, instructing him to shuffle a few steps forward. Then I rotate him and slowly lower his body onto the bed. I ask if he wants his clothes on or off. He chooses the latter, so I undress him carefully, down to his diaper and socks, the way he likes to sleep now.

How much he is aware of this is unclear. And I think to myself that the only blessing in the situation would be if he did not know. If he was unable to grasp the condition he is in. That may be the only gift dementia can offer us.

As soon as he is in the prone position, he becomes convinced he is falling. I'm not sure if he feels as if he is moving, or the bed is. He is not able to articulate. The only words he can find are "falling" and "dizzy." Speech is very difficult for him these days.

I assure him he is safe. There are rails; he cannot fall off.

The bed needs to be elevated because of the congestion in his lungs. But he wants to be on his side, so I have to lower it first to physically move him. He winces, and I feel guilt. I don't know what I am doing and I'm hurting him.

His body is completely limp and he is able to offer no assistance as I work to move him. It is very difficult. I tell him I will get a nurse to help. But he is already drifting back to sleep. So I tenderly move his body into a position that looks as if it will be comfortable and pull the covers up under his chin.

I lean over and kiss his forehead. "I love you, Daddy. I'll see you again soon."

"I love you, too," he murmurs.

I am down in the darkness. The light feels out of my reach. God forgive me; I wish for death. I want this hell to end. For all our sakes. I am running out of strength. And yet, I will require so much for the final leg of this journey...

This post originally appeared at The Writer Revived. It is part of a series I am sharing here concerning my family's journey with dementia. My father passed away March 10, 2014.


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