Home Adjustments

Wood & Co.

What a relief to have Gary at home. I was grateful for reduced travel, parking and navigating hospital and time away from home. Direct care, meal preparation, pain management, overnight availability, scheduling family caregivers and various hospice visits were the new responsibilities. Gary has nicknames for almost everyone. “She who must be obeyed” is how he often referred to me. This moniker was perfect since I was command-central soliciting help, scheduling and providing directions to my amazing family members. I handled communications to my family, his family and close friends and all hospice members on our team.

Nighttime was a challenge. Gary slept in nap intervals and at night anxiety increased, fears expressed. I slept in the same room wanting to be close. I am a light sleeper. Hearing each other breathe, groans with movement, and medication requests sent me from the bedroom to the living room couch after the 3rd night. Gary voiced hurt feelings but admitted two days later sleeping better too.

Out eldest son and my brothers and sisters stepped up to spend time with Gary allowing me to continue working full time. Early on our son could come over after dropping off girls at school. Midday to afternoon brothers and sisters covered three hour shifts. Wednesdays were early release for the grand girls, so they would come with their Dad until I could get home.

Becca, the hospice nurse who did the inital assessment returned a few days later. She checked Gary and spoke with me about his pain, appetite, nephrostomy tubes, medications. She said, Gary is in the pre-active stage of dying. I had not heard this description and found it confusing. I asked what defines active dying? I thought that is why we are in this situation. She explained indicators of withdrawl from social interaction, decreased appetite, sleep changes are expected soon.

By week two, the activity, changing people, many questions, conversations, and written instructions resulted in increased anxiety for Thor, Gary and me. Gary was becoming irritable, confused and overwhelmed. Thor identified the need for consistency and fewer handoffs to improve conditions for his dad. We needed continuity with pain management and communications with Hospice team members.

Hospice staff included Nurse, Chaplain, Socia Worker, Nurses Aide and massage therapist. That was 5 visits a week. Thor made himself more available and I left work as needed. I’m grateful to my boss for his understanding and support. By the end of week two, Gary’s level of awareness, interest in anything except pain meds, willingness to wash up and brush teeth all declined. Saddest was the absence of his sense of humor. Part of him was disappearing.

He would murmur, "When are we going home?” Stating” We are home,” upset him. Maybe he meant the home he built where our boys grew up. He stopped calling me by name. He called out his sister’s name (Colleen) when he wanted something. I came to believe, he was asking about going home meant his childhood home. Is this dementia or is it cancer? Fact was, this is active dying.