Wednesday, October 29, 2008
Switching hospice care
Usually I write about etsy and art but that is not all that's going on here in the tree house. For the past 14 months I have been the primary care taker for my partner Claire who was diagnosed with stage 4 cancer two Augusts ago. We were disappointed when we switched from regular medical home health to hospice care. One of the arguments for hospice care was Claire's falling and decrease in mobility which called for more care also after 14 months with marketing and art shows to attend to I was getting more stressed about being it 24/7.
Early in the month, I had gone to a wedding and Claire who was not left alone, her daughter in law came by for a few hours for the first time in ten months. My son Eric was here all day. None the less after her daughter in law left, Claire decided to try to do things on her own and took a bad spill, one of many recently. That really began a down hill slide. The idea of getting hospice was to free me up for work and a life outside care. Hospice talked about how family usually steps in Claire's siblings and one of her cousins have been quite helpful when they can. One sister stops by once a week and she lives over an hour away in the warmer months. She suggested getting hospice in because the family is really to busy to set up a regular schedule. Her sons have been unable to come over since Christmas though one calls weekly these days.My Mother who lives out of state has been very helpful coming up for weeks at a time.
This whole notion about more family care was brought up by hospice partly in response to our desire for blocks of time because they seemed to be understaffed and unable to offer this stopping in for 45 minutes here and there during the week really more disruptive than helpful in lots of ways. Its not that I don't want to care for my partner I need to get out, buy supplies, maintain some friendships, network and market and just breath. Well I can run into town cell phone in hand with my sons here Claire is more apt to not ask them for help.She will call me In town before she asks them for help.
After the 4th conversation with the service about our need for blocks of time and the third call to our private insurance. Because one of the excuses for not providing was insurance the other was our dog.
I called another agency and signed up. Now we have two sets of supplies here because the various agencies get supplies from different locations. Not a terribly client centered practise. So we are ironing out the new program.
It will all work out I'm sure.
In the meantime the guys were very sweet the other day the created a romantic bistro here. One cooked a fabulous meal and the other dressed up and waiting on us in style.