The transition to hospice care changed everything since hospice care is essentially aimed at providing comfort and support until the imminent death NOT providing treatment to prevent death. It was the beginning of the end.

The day David began hospice care was the first time we talked about dying and it was the last time. We cried a lot and abruptly ended the conversation. David’s desire was to stay home and this was my desire as well. My Mom staying with us also made this possible, knowing that he was getting the best care and love. I continued to work, continued to maintain a normal routine for the girls. Unless you were in our house, nobody knew the extent of what we were dealing with.

The move to hospice made me angrier. The grieving began, I cried often when I thought I could not be seen or heard.  I became more open with my daughter letting her know Daddy was not going to get better as we were all hoping.

I found it hard to be grateful to any of the staff from the hospice care team.  The end goal of hospice was contrary to my heart’s desire. I was angry each time I saw them for sure they have the wrong house.  In my view, they brought their dirty feet into our home, I wondered what house they were coming from, bringing the germs and illness of a truly sick person’s house into our home.  They just did not belong in our house.  I tried to ensure that I was out of the house before they arrived and returned after the left.

My emotions in no way reflect the good work of hospice staff. They were understanding, did everything to ensure David was comfortable, responded to any need with prompt attention. At the end, they were there with sincere sympathy and support to try to ease the pain of dealing with David’s passing.

This is one of several posts that details our experience with bladder cancer. A concise summary of the overall experience can be found in the blog post titled “breaking the silence”.