Hospice

Minke has been in Homecare Hospice for two weeks. I was naive to think that our lives would suddenly become peaceful and quiet. These last two weeks, like everything else about this ALS journey, have been a whirlwind.

First, came the onslaught of the caregiving agencies we use. They needed to come to our home and assess the situation. Then, the hospice workers themselves were here. They needed to do intake, and ask extensive questions that Minke was unable to answer due to poor breathing, so I spoke for Minke and answered questions about his life as best as I could.

I felt the grief rise up in my throat as I spoke of our life together, and it felt as if I were being choked. It got stuck in the middle of my throat and I gagged and fought to push it down so I could continue my story. The Hospice Social Worker said, “It’s okay to cry, Debbie.” And I responded, “No. Not here in front of Minke. Not now.”

My grief, you see, has become quite personal. I know it’s upsetting to Minke to see me falling apart. And it’s uncomfortable for others to see how tremendous my emotions are. If I can help it, and I can’t always help it, I release my sorrow in private.

In the search for something, anything, to help me cope with all this, I discovered a video that surprisingly helped to calm me down. I will share it here because I found it to be very helpful. Practical. It helped to take away some of my fear.

The acceleration of this disease has never ceased to amaze me. Since Minke has been home and opted for Hospice Care instead of the tracheostomy, I’ve seen him appear more calm and relaxed. But I’ve also seen his decline. His fingers are now curled like little puppy paws and his hands have become completely useless. His speech has slowed down quite a bit, and talking is not always possible because of his inability to breathe.

And yet, the visitors continue to flood our home. And though I want Minke to see his people and vice-versa, I see the tremendous toll it takes on him. I go into Mama Bear protective mode and I want them all to leave because they are sucking up all his energy.

I bought a twin-size rollaway bed and set it up right next to Minke’s hospital bed. Last night, for the first time in a year, I slept beside my husband. I held his curled-fingered hand in mine, luxuriating in the warmth of his touch. Zelda was close by in her bed, and the three of us were all together again in the same room. Like before. As it should be.

I don’t know how much time he has left. But I see his body beginning to shut down. I find myself staring at him as he sleeps, watching his chest rise and fall, loving him, cherishing these days. I ask the Universe for strength. And peace for Minke.