Last night I failed my wife, once again.
When we finally decided to stop all treatment for my wife’s lung cancer and called hospice, I promised that I would take care of her at home so she would spend her remaining days surrounded by her family and pets in the home she loved.
I said, “There’s no f***ing way I’ll put you in a facility.”
We called hospice a month ago after she had intractable pain for a week.
Within 48 hours our in home hospice team helped us get her pain somewhat under control. But over the next 3 weeks it steadily worsened until it reached a point where she was in agony again.
We increased her medication amount every few days. Simultaneously we increased the frequency. We went from every 8 hours to every 6 to every 4 to every 3 and finally to every 2.
No amount of medication brought her relief. She was delirious with pain while suffering from the confusion, instability and anxiety that often accompanies end-of-life patients who have cancer pain and strong meds..
Yesterday, I called our nurse for help again. She spoke to the hospice doctor who said my wife needed to go to inpatient hospice for IV medications.
Ellen cried and said to me, “I don’t want to die in a strange place. Don’t make me go.”
The doctor was willing to increase the meds once more and give it another day. The nurse scheduled a visit the next day to see how my wife was doing.
We increased the meds but it had no effect. My wife was jumping up from lying down to standing to walking to sitting and back again constantly in a futile effort to find some position that was more comfortable. Every time she moved, I had to jump up too in order to keep her from falling down due to the combination of exhaustion, pain and narcotics.
After a few more hours of this, my wife begged me to help her. She pleaded with me, “Help me. Can you help me? What should I do?”
In order to find relief from the unending pain, we gave up and went to inpatient hospice.
I don’t think she’ll ever get out of this place and return home.
When she’s awake, she’s agitated and wants to leave immediately. But we still haven’t gotten her pain stabilized. Nor can she sit up, speak coherently or think clearly.
She is on 40 times the amount of drugs she was on a month ago – and still she has pain.
The doctor told me he would send us home with an IV and round the clock nursing coverage if we can get her stabilized for 24 hours. If we can do that she’ll die at home the way I promised.
I just don’t believe it’s going to happen.
But if we cannot make it back home, we will at least have tried everything possible to relieve her pain.
That is my #1 priority. Everything else is secondary to that.
In a perfect world, she’d die peacefully asleep in her own bed.
Instead, we sit in a cold, sterile hospice unit. It’s a lot like a hospital room – just a little quieter. Whenever my wife wakes she tries to get out of the bed and says, “Get me out of here.”
And I tell her, “Not yet – we have to get your pain under control first. But I’m right here beside you and I’m not leaving.”
I never thought it would come to this.
Goddamn this is hard.