I went to the hospice yesterday morning at 7:30 intending to stay for an hour. I should learn by now that it is not possible especially when I had to deal with a call I had from the Head Nurse Monica at the hospice on Monday evening. She just returned from her vacation on Monday and Dad insisted on seeing her because he wants to be discharged. I spoke to her for more than an hour – giving some historical information about his cancer and treatments. She wanted to talk to me before talking to him because she may have thought that we wanted him discharged. I explained that this was his own doing and not a decision we made. She thought it was wise because he needs medical care which we are not capable of providing at home.

So I went there yesterday to have the same conversation I have with him practically every other day. I explained AGAIN why he cannot be at home, and that the level of medical care he requires is so vast that it would be totally irresponsible for us to do that. He listened and seemed to understand, but at the end of the conversation, he said that I can call Mary (the Palliative Care Coordinator) to tell her that she can arrange for the send home care workers at home and they can take care of him. We already did that from August 2008 till the end of January 2011 and during that time, we started out with help about 8 hours each week to 22 hours each day by the end of January this year. From November 2010, there were home care workers in his home for 22 hours each day. I was managing a schedule of about 8-12 home care workers each week. Some of them were good but some of them were doing this as a second or third job and many times, dad or mom would have to wake the workers (even during the day time) to ask for assistance. The other problem is that they are not trained health care professionals so they would not even put some cream on his leg if it was a prescription cream. They could remind him to take his meds, but they could not put it in his hand or mouth. Although we are grateful for the assistance over 2 ½ years (they thought he would last for about 6 months when he was first put on the Palliative Care program), his needs have multiplied exponentially in the last month. I told him that although I understand that he doesn’t want to be at the hospice, he needs to be there It’s just like he needed to go to Emergency in November because in spite of our best efforts to re-hydrate him, he needed two litres of saline that could only be administered and monitored in a hospital.

His lips are very swollen and he now appears not to have a neck with all the swelling in his face. Most of you would not recognize him if I showed pictures. I asked the nurse about this and she said that the lymphatic fluids are pooling in his face because the tumours are going more rapidly now and blocking the drainage channels. His legs are also quite swollen and she explained that he needs a certain amount of protein in his body and he is not getting sufficient from his diet (although he is eating it) so the protein in his blood cells are now moving to the tissue and that is not reversible with medication or anything else. The best that he can do is to keep his feet elevated as much as possible which is what we were doing at home and continue to do that the hospice the cancer which is catching up with our best efforts.

Mom, Sophie, Darwin, Karran and Kelsey went to visit today and dad was very tired and did not want to eat much. He likes to have his visits spread out so we are not all there on the same day and then no one visits the next day but the schedules do not always permit it. I have a long day at work tomorrow so I won’t likely visit (which I told him about but he still asked mom where I was and if she talked to me today). He is declining much more quickly now so things are changing weekly. From what I have read at eh virtual hospice website, if changes are happening over many months, then he probably has many months to live. If they are happening monthly, then he has a few months. If the changes are weekly, then he probably has weeks. From my observations over the last five years, I am now seeing changes weekly. No one knows for certain how long he has but we are doing what we can do to ensure his comfort and care. 

 Here is the website for the Canadian Virtual Hospice Canadian Virtual Hospice.  It has some very good information.  I may have posted it before.