Did anybody else see a show on PBS this week called “The Caregivers”? It was about people with brain tumors and their caregivers. Yes, it was a different disease, but the caregiving experiences certainly sounded familiar.
One of the caregivers kept a very complete record of everything that happened during about a year of his wife’s illness. It was over 400 pages! Somehow he ran into a doctor who was interested in seeing it. The doctor said that he had no idea of everything that went on at home between visits. He said it was like being given a medical textbook with all new information in it, when he had been treating the disease for years. (This made me think about starting a log myself, recording all the phone calls with the doctors, medication changes, etc., that just seemed like a “normal” part of my life now.)
It also showed medical residents talking in meetings where they discussed the caregiver issues. They said that they were too busy to address the needs of caregivers when they were only a family member of the patient. This made me think—in our case, it is the caregivers who make most of the medical decisions for our loved ones, sometimes with very little input from doctors. We also provide most of the day to day care of those patients. If we don’t have the information we need, or if we are overworked and overstressed to the point that we can no longer care for our loved ones, in what way does that serve the doctor’s patient? I think that’s the part that they can’t see.
One caregiver said that he had been taking his wife to the hospital every time she had a seizure. After months of this, one of the doctors casually told him that it really wasn’t necessary to take her to the hospital each time. They could just ride it out at home. The caregiver naturally wondered why it took months of hospital visits before anyone mentioned this to him.
If things are like this in the treatment of brain tumors, which seem to be somewhat more understandable and predictable, no wonder we feel like we are hitting our head against a brick wall in trying to get information and help on a disease where “if you’ve seen one dementia patient, you’ve seen one dementia patient”.
Anyway, I wondered if anyone else saw this show and, if so, what they thought about it.
I have not seen it nor heard about it? Do you know if it will be repeated? Doctors don't know unless we tell them. Marsh ( a retired physician) is now speaking to physicians groups about caregiving.
It took me a while, but after much Googling I finally found some information on this special. At http://www.openeyepictures.com/thecaregivers/ there is more on this show, and evidently you can even watch it online if you have a fast computer. Since it is a couple of years old, it would probably be hard to find again on PBS.
While searching for this, I found a link to “The Caregivers Handbook – A Companion Resource for Caring for Your Parents”. This book goes with another series from PBS. I didn’t know if you had already seen this. The web address is http://www.olderindians.org/File/Caregivers_Handbook.pdf
This book has 96 pages (it took a while to load) that is directed toward caring for a parent, but also has a lot of good information for all caregivers—links for more information and definitions of commonly used terms, for example. I’ve been doing this for six years, but I’m still going to read through most of it to see what I can learn.