CAREGIVING: I admit it. I appreciate all the kind comments about what I am doing and how I am doing. I’m grateful for all that support: from my family, Kathy’s family, my Facebook friends, my music friends and the different health aides and nurses the have walked through the door. I appreciate criticism too. Tuesday Kathy was visited by Susanne,… Read more →
Tag: Huntington’s Disease
Weekend, Weakened, Weak end
CAREGIVING: Thursday was forgettable, but in a good way. I can’t remember any major problems at least. Dilcia got confused about what day it was and forgot to come. I had planned to run to Stop & Shop to pick up Kathy’s refill of the Scopolamine patches but it could wait until Friday. I placed an order with Peapod so that Kathy would… Read more →
Wednesday: The Cavalry Returns
CAREGIVING: Whattaday. Wednesday is usually the day that Hope comes in the morning and stays for over four hours. This gives her more time to give Kathy a shower and then gives me time to get away. I was hoping to go shopping at Aldi’s to stock up on stuff. Things got off to a rocky start. But they ended… Read more →
Five Wishes
CAREGIVING: On Wednesday afternoon after the palliative care nurses left, I went over some more parts of Five Wishes, an advanced directive plan or living will. I’m sure there are a million living-will forms on-line but this is the one I found years ago. At the time that we started this, Kathy had not been diagnosed with Huntington’s Disease although I suspected she… Read more →
Hospice? Not so fast after all
CAREGIVING: Tuesday had been an emotional ride, what with Erica saying it was probably hospice-time; and realizing that Kathy was making her own decisions quite well. On Wednesday Hope came to give Kathy her shower and stay with her. Monday had been too tough for Kathy so she gave her a sponge bath.She really was due for a full shower.… Read more →
“You are there.” The Truth Is Tough to Swallow
CAREGIVING: Erica the speech therapist came for another visit to check Kathy’s swallowing on Tuesday (4/29). It was one of Kathy’s bad days. There was more congestion from fluid, and we made the mistake of testing her swallowing while she was lounging on the futon. Her body was not in the best position. We had already eaten breakfast so Kathy was already… Read more →
New wheels
CAREGIVING: On Thursday Bob our new physical therapist came with a wheelchair expert named John to assess and hopefully get us a new chair for Kathy. The idea will be to convince Medicare, MassHealth (Medicaid) and probably Health New England (her Medicare Advantage plan) that it is a necessary piece of equipment due to her Huntington’s Disease. Best case is… Read more →