Another step toward what we know is coming…

We made the decision this past week to bring in hospice for Connie

            THE DAY CAME….and we called in Hospice for Connie this past week.

            The staff at our care center had mentioned, casually, that I should be thinking about hospice care for Connie. She has declined rapidly since Thanksgiving. She is in a hospital bed and wheelchair. Her speech is almost gone. If she tries to walk on her own, she falls.

            I was resistant. I am an old guy who goes back to the time when hospice was what you called when someone was within days of dying. Of course, I’ve known at an intellectual level that hospice has grown into something much more than that, but still I know I was feeling that to admit to the need, or the timing, would be a step closer to good-bye.

            Last week the care supervisor, the RN, aides all told me it was time. They outlined all hospice would do. It is not death. It is comfort and it can be involved for months, in some cases a year or more. It provides another level of care that the staff at the center cannot always provide. And, they said, it is covered by Medicare, so it is not an extra expense. I would have done it anyway, once convinced of the need, but it was nice to have the coverage.

            There is one aide I trust implicitly so after meeting with the staff, and basically deciding to do it, I went out and talked to her.

            “You are my go-to,” I told her. “I think I am going to do this, but you are the tipping point. If you tell me, it’s time, it’s time.

            She looked at me, then said “Mr. Rich, it’s past time.”

            That afternoon I received a call from hospice. It is the hospice service our care facility uses and I know two or three residents who are on it and have been for a while. They woman who called was beyond courteous and when I hung up I felt comfortable in my head with where we were going. But in my heart? I don’t know that you are ever there in your heart.

            The next morning an RN from the service came to the memory care unit and she, Connie and I met in a private room. The woman was kind and caring and went through a series of questions, some answered by me and some by Connie to the extent she could. It was all designed on one level to quality for Medicare and on another to determine just what Connie will need going forward.

            When it was all over, I asked Connie “do you understand what we are doing?” She said “yes.” “Are you OK with it? I asked. She said “yes.

            I DON’T KNOW these days what she knows, what she understands. But I do know that after we were first married, she got her master’s degree in sociology with an emphasis on gerontology. The last 15 years or so of her law practice were focused heavily on elder law. She has been interested in aging and old folks most of her working life. 

            When we did our advanced directives she drew on what she had seen. She was adamant she never wanted a feeding tube. She did not want to become like people she had seen in her client families. She saw the stress, the pain of lingering.

            When she moved into the memory care center and looked at residents who were in advanced stages of dementia, moving toward death, she said “don’t let me get like that.” If we were an assisted suicide state, and dementia were a permitted reason for invoking it, she would have done it.

            I don’t think anyone could have made themselves clearer than she about what she wanted.

            You would think that would make all this easier for me, and on one level it does. 

            But when I said “yes” to hospice I knew in my heart that I was taking one big and irrevocable step toward the end. A part of hospice is that curative care stops and comfort care takes over. 

            It may still be a long good-bye for us, but somewhere out there in the fog that is dementia, the road comes to a dead end. I don’t want to get there yet, but the car never will go into reverse again and the end will come. 

Rich Heiland, has been a reporter, editor, publisher/general manager at daily papers in Texas, Pennsylvania, Illinois, Ohio and New Hampshire. He was part of a Pulitzer Prize-winning team at the Xenia Daily (OH) Daily Gazette, a National Newspaper Association Columnist of the Year. Since 1995 he has operated an international consulting, public speaking and training business specializing in customer service, general management, leadership and staff development with major corporations, organizations, and government. He also writes the blog stuffonmymind.blog. Semi-retired, he and his wife live in West Chester, PA. He can be reached at [email protected].