Cancer Diary: The Importance of Ambiance

 

When Carl came home from the hospital and was put on in-home hospice, we, the members of his family (my daughter had come from the East Coast with her family and my son had come from Sacramento), did our best to learn all about his medical needs. The kids had come home because it was clear the end was near, and we wanted to make sure that his time at home was as pleasant as possible, surrounded by family.

We learned about the various medications he had been taking and would be taking. He was not able to communicate well by then, but he had quite an arsenal of regular pills that he took every day, and once he stopped being able to sort them out himself, we had to figure out which he needed when. He was also given new drugs -- morphine, which he used only a little of, and an anti-anxiety drug, which he never needed. With the morphine, instructions were unclear, and we guessed at amounts. Checking in with the hospice nurse, we learned that we were giving a 300-pound man the dosage that would be used with an infant. We adjusted, but he never needed morphine on more than 4-5 occasions.

We learned how to clean him since he could no longer clean himself, and we learned how to move him with the Hoyer lift. We moved him into the bedroom at night and back into his chair in the living in the daytime. He spent more time in the bed, which he thought would be more comfortable, until he made it clear to us that he preferred to be around people in the living room. 

That, we thought, was making him comfortable. We missed so many things -- and opportunities for a more pleasant experience for him. We did not know; we did not think.

Fortunately, our priest came to visit, and he did notice, and he did know. He suggested some things that we could have been doing all along. Things that had nothing to do with medicine but everything to do with health, especially mental health. What he suggested had a lot to do with the senses:

• Let there be light...we had him in the living room, which had a great view of the town from the top of our hill and of a forest-like collection of trees seen from the side window. We could have brought his hospice bed into the living room. There was room -- and then he did not have to be away from the action and the window light and views at all, ever.
• Sound. We, for sure, had noise but had not given consideration to the obvious fact that music would be more pleasant to listen to that a lot of chatting and overheard interaction among family members. I knew his favorite music; he had it all set up on Pandora. We only had to turn it on, and so we did.
• Smalls. We had not thought about that it. Our priest suggested pine spray or something woodsy since Carl had worked for the Forest Service earlier in life. None was immediately handy, but I had stocked up on my favorite scent, lilac, which Carl liked, too, and so we used that much more liberally -- not just to cover up bad smells, but to made good ones. Friends sent flowers, and we put those nearby. Nothing smalls better than a house full of flowers!

Carl only got to enjoy these efforts for a couple of days. Really wish we had known or thought about ambiance earlier. Wish the hospice had suggested it (but them we had the hospice from hell initially). Wish Carl's had deteriorated last rapidly that we were not making roller-coaster decisions.

The lovely rose above appeared recently in the hedge that surrounds the columbarium where Carl's ashes lie (together with the ashes of his beloved cat, Intrepid, who preceded him in death, also from cancer.) Now, he has ambiance! 

Blog editor's note: As a memorial to Carl, and simply because it is truly needed, MSI is now hosting a web page, Carl's Cancer Compendium, as a one-stop starting point for all things cancer, to make it easier for those with cancer to find answers to questions that can otherwise take hours to track down on the Internet and/or from professionals. The web page is in its infancy but expected to expand into robustness. To that end, it is expanded and updated weekly. As part of this effort, each week, on Monday, this blog will carry an informative, cancer-related story -- and be open to guest posts: Cancer Diary.