After we put Jim on palliative care, he still stayed in the same hospital room. They didn’t have beds available on the palliative floor.
This was okay at first. His roommate was wonderful. A delightful little old guy who also had dementia plus some painful bowel issues. His family were great… except for his wife.
She didn’t want to be there. She seemed very resentful at having to take care of her husband, and she made everyone around her tense.
She was abrupt and rude to everyone, especially her poor husband. Apparently, she as a nurse before she retired but WOW, she did everything you aren’t supposed do to somebody with dementia. She was harsh and talked to him like he was an idiot. She stomped around the room and banged the bathroom door every time she went in or out.
When I asked her to be quiet because Jim was having a rough day and had finally fallen asleep – she slammed the bathroom door in my face.
Even though I knew I couldn’t complain about her behavior to the hospital administration, because she wasn’t staff. I asked them what I could do. This wasn’t fair to Jim or the other patients and staff around her.
The staff I member I talked to, went directly to the charge nurse, as the floor manager had already left for the day. They came back to let me know that at least one of us would be moving the following day.
I knew there was a possibility that we could be transferred to hospice. So I really hoped it was us that was leaving.
Our system is a little different. Had I wanted Jim to be cared for at home, extra mural nursing would come in several times a week. Our local hospice is run out of an old convent building. You have to go in to their facility for full hospice care.
But you also have to be approved.
They want to maintain the atmosphere of calm and peacefulness. Luckily, Jim and I made the cut and we moved to the facility the next day.
One of James daughters has come to stay with me for the time Jim has left.
As first she offered to come to support me. I refused because i knew I could handle the load myself. I dudnt want her to fly across the cou try afain just for me. But then she called asking if she could come because she couldn’t handle waiting at home for the phone call to say her father had died.
I told her to get her ass on the plane.
It’s been nice. Sharing the load makes it lighter. We’ve been able to give each other a break, share memories and relax more than I would have been able to do alone. She and I internalize our emotions, so it’s been peaceful in the evenings while each of us cope, grieve and prepare ourselves for the next day.
All three of his kids have been able to visit and say goodbye within the last few weeks.
Jim was agitated when we first arrived at the hospice facility? He’d been expecting to go home, and was angry that, while homey, his new bed wasn’t at our house.
We left that first night after trying to feed him supper, and let the staff settle him once we were gone. He had a good night.
Yesterday, we came in and he slept for most of the day finally waking at 4 o’clock, just before we had to leave to pick up my brother from the hospital (’cause our load isn’t enough, fate added another potentially serious illness into the mix)
Today is the 2nd full day in hospice. And so far, Jim is in a deep sleep. The care and attention his daughter and I are receiving is beyond expectations. The staff are just as concerned at making sure that we are okay as they are of keeping Jim comfortable.
The doctors have estimated we have a week left before Jim gains his wings.
While I’m saddened to my very core, this is the best version of the end of Jim’s life. It’s relatively fast and pain-free. We’ve all had a chance to say goodbye, and best of all, he has no idea what’s happening to him.