Unprepared

With every decline, I feel so unprepared. I know what is coming, and yet each decline surprises me and breaks my heart.

DH was accepted for hospice at home in September. I didn’t think he would qualify because he was still speaking and eating, not losing weight, able to swallow. But he was non-ambulatory.

Yesterday he was recertified. The nurse says that she has observed a decline every week when she visits.

I am sitting here in the dark early morning hours listening to him cough on his own saliva. Yesterday he pocketed food in his cheek and was almost entirely non-verbal. I can no longer transfer him to his recliner because he is too frightened and pushes against me. He loves his showers and I’m so sad he will soon not be able to get out of bed to enjoy them.

This week I was going to buy an electric lift chair for him, but I canceled the order. He can’t sit up and would be at risk of falling. Hospice provided a hoyer lift, but the nurse doesn’t want me to use it because he is so easily frightened. She increased his Seroquel to keep him more comfortable. We are on the verge of being completely bedridden.

Last week I went to a funeral home for final planning. It is something I wish we had done together. I was sobbing before I even parked the car.

I also made plans for a brain autopsy because we never got a diagnosis other than “degenerative” and “Sorry, there is nothing we can do.”

I just can’t stop crying. I’m losing my best friend and we never had children. DH’s adult children finally reconnected with him after 7 months of silent anger, but they did not speak to me when they visited. I am a ghost to them.

I wish I had a question for you, but I know where this is going. And yet I feel so utterly unprepared. I just needed to share. Thank you for being here.