I know some people are wanting to hear news about Dan so I will write a short post. Dan's condition continues to deteriorate. He cannot eat and takes in very little fluids either. He is extremely thin and his balance is very poor. He spends most of the time lying on the couch. Though deaf, he can watch close-captioned TV, but is no longer able to concentrate on books or newspapers.
He is now under hospice care and the nurses and the social worker have been, for the most part, wonderful. I truly believe they are guardian angels in human form. Hospice is all about the patient's choice. Dan is a very stubborn man and is at the point where he is refusing to be shaved, bathed, have his teeth brushed or his clothes changed. But that is HIS CHOICE. He also refuses the hospital bed we had brought in, plus the walker, plus the commode. He gets very angry when we try to offer him help of any sort. This is hurtful to me, but Kristen keeps reminding me that it is the brain tumor talking, not him.
By choosing hospice care he is able to have his main end-of-life wish fulfilled, which is not to be hospitalized, and to have only palliative care.
He is not in pain but has meds available for pain, anxiety and nausea. My sister is watching him for 10 hours a day so I can continue to work as long as I can because I have very little vacation time and even less sick leave. I spent most of last week at home and was able to use family sick leave for that.
My biggest frustration is trying to get some respite care arranged for me to have a few free hours on the weekend, but so far it has been a battle of agency red tape.
I wouldn't wish this situation on my worst enemy. More than anything it is mentally exhausting, but I feel physically drained as well. I am sure that the support of my family and my friends in blogland has helped keep me sane and putting one foot in front of the other for this long. Thank you so much.
The hospice nurse was able to bathe Dan this afternoon, get him into a gown and get him into the hospital bed. He looks very warm and comfortable now. Some say there are no coincidences. A co-worker of Amy, one of our hospice nurses, grew up in Langdon, ND, where Dan was a physician's assistant for five years. Dan used to work with this lady's mother at the Langdon Clinic and the daughter remembers him too (from the 1970s!). Yesterday Amy brought over a beautiful quilt given to Dan by these two long-ago friends.