Cancer Diary: The Third Way - Getting Help via a Live-in Caregiver

photo: care.com


When Carl was dying from Cancer of Unknown Primary, we were facing the question of how to handle his 24/7 needs for care. Everything was compressed during that time -- decisions had to be made without the time to reasonably research them and rationally make them. (That is the primary reason MSI Press established Carl's Cancer Compendium: to pull together a lot of the basic, time-consuming research that could be accessed with just a couple of clicks). 

When we decided to try chemotherapy, he became not eligible for hospice care. IMHO, there is a problem with the binary system behind hospice availability. Decide to work on dying - hospice is available. Decide to work on living -- you're on your own. Yet, this is exactly the time that patients and their families need help; being on your own is certain to result in a range of emotions, including anger and frustration, as well as poorly informed decisions, burnout from family member who cannot do everything and be everything to everyone -- and be available 24/7. Usually, there are other demands, like earning a living, caring for children, and on and on. In that respect, the hospice system is broken.

 After seeing me struggle for three months, a friend suggested live-in care. Unfortunately, three things conspired against us:

  • No one wanted to move into a strange house during COVID.
  • We could not afford it. We had already used saved funds to remodel the house for disability, including $11K for a double-chair lift to get into the house. In addition, I was caring for two disabled adult children.
  • We did not have a spare room. To make one, we had to disassamble Carl's office, which took a lot of time because he had a lot of tech equipment that just did not fit anywhere else in the house, all spare space being filled with care equipment. Even donations were difficult during the COVID shutdown. We started to prepare a room during Carl's fourth month of cancer care (and my fourth month of near-insanity) in case we could find funding, but that was also complicated by the need to be present 24/7 to give Carl care myself, plus provide care to the two disabled children, one at home and one living in the community without a caregiver (she lost her caregiver during COVID). Unfortunately, it took almost a month to make over the room, and by then, Carl had died.
Still, live-in case is a third option. I wish I had thought about it or that my friend or someone else had suggested it earlier; we might have moved ahead with it in time to get some help before losing Carl. I now use the room for a live-in caregiver for my disabled son; the cost is minimal because she gives the amount of care (also minimal but important and helpful) that covers what would be one-room rental cost. 

The other thing I found was that there are not many sources for finding live-in care. Word of mouth takes a long time. Supposedly, there are agencies that do this, but not here. Care.com is one that is everywhere. While I did not find my current live-in care through care.com (I did get some inquiries but they were not able to deal with my son's difficult diagnosis, and I ended up finding someone after many months through word of mouth), I know people who have been successful in finding someone through that means.

For more information and some thoughtful insights into life-in care, check out this article from ViewerDigest.

For other Cancer Diary posts, click HERE.

Blog editor's note: As a memorial to Carl, and simply because it is truly needed, MSI Press 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 CCC 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. 


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