Tag Archives: hospice care

Breaking the silence – Hospice care

08 Saturday Mar 2014

Posted by in Breaking the silence

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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”.

Breaking the silence – dealing with end stage of cancer

04 Tuesday Mar 2014

Posted by in Breaking the silence, Cancer Sucks

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After the cancer reoccurred less than 6 months after completing intense chemotherapy treatment, David and I knew the odds were against us but this made us more determined to fight harder. David put up a great fight for his life. We were so caught up in the fight and finding the right treatment that I refused to be distracted by thinking that this ugly disease will lead to the end.

I could not accept David’s death as an option, I was not interested in discussing it. This was my coping mechanism since I could only function by believing David would live. Resiliently, we kept fighting for victory over cancer.

This changed in November 2013, it was not because I decided to listen to another Doctor of gloom, or over analyze yet another CT scan result.  It was because despite the treatments, the disease continued to take a toll on David’s health. His energy level was depleting, his pain progressed, fatigue increased, and he was less ambulatory.  It became very clear that the progression was irreversible, the treatments were ineffective and causing additional anguish to David.

For the first time, I allowed my self to start coming to terms with the inevitable, the unthinkable. I tried to numb my emotions. I became a different person, a person I that I did not know and one that I am quite sure I did not like. I asked the Lord to spare David from his pain and suffering to preserve his dignity and in David’s words “make it a quick death”. I felt guilty, like I was giving up on David, I became distant from the world.

I recall going on a business trip, it was an escape from my reality – interacting with colleagues like my life was normal. I felt like an impostor. I came back home to my reality, a sad one as I watched my husband deteriorate further. Later that week, I had to take David to the emergency room. Upon his discharge, I knew it was time to change from visiting nurse to in-home hospice care.

I felt defeated because the cancer seemed to be winning.  We are a winning family, we were suppose to win this battle, our biggest battle. How could we go from fighting so hard to accepting the end was near? My goal changed to ensuring that David was comfortable until the end.

David fought hard and was in hospice care at home for almost 2 months before he took his last breath. Those two months as the end approached were undoubtedly one of the worst phases of our life.

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”.