There’s No Spice Like Hospice April 29, 2012Posted by ijwoods in Blog+.
Tags: caregiver, caregiving, dying at home, hospice, hospice and palliative care, palliative care, providing comfort
I can’t remember how many years I’ve said to friends, including K, that when it comes to dying I’m going to do it at home or in some desolate cabin in the forest. The thought behind those statements never went very deep and was always based on some romantic image I have of being alone, peacefully going within, uniting with God and never returning. I know I’m not the only one with those sentiments since I’ve heard it from quite a number of other people as well, sans the uniting with God bit. But now having lived through an EOL experience at home I have a more complete picture, particularly for the longer term situations. I still feel the same way about dying at home, and maybe even more so, but realize that some preparation and realities are in order.
K was very clear she wanted to go through the dying process at home. It was more comfortable, humane and since I work from home there would always be loving, responsive company. We did some research and tried best to understand how the cancer would affect her over time. The doctors we asked didn’t provide a lot information about what to expect outside of, “she will get increasingly tired and then pass away”. A lot was taken for granted by them about what we knew. The best advice finally came with a friend, also a doctor, when we asked about what we can expect and what to prepare for. He simply told us “It’s time to start looking into getting hospice care.”
I of course heard of hospice but it wasn’t until I began to look into it that I understood what it was. Like many others, I thought it was a building where someone is dropped off and is taken care of during their EOL process. To some extent that is true, but I didn’t realize that a key purpose of hospice care was for dying at home or in a homelike environment. Here’s a nice definition I found from the Hospice of Southern Illinois, “Hospice is a special healthcare option for patients and families who are faced with a terminal illness. A multi-disciplinary team of physician, nurses, social workers, bereavement counselors and volunteers works together to address the physical, social, emotional and spiritual needs of each patient and family. The hospice team provides care to patients in their own home or a home-like setting regardless of the patient’s age or ability to pay.” Hospice actually provided us with a team of people who monitored K by coming to our home. They even kept their eye on me! The advice to get hospice help didn’t come a moment too soon since K was deteriorating rapidly at the time.
Our main doctor had to put in the request for hospice services and after arranging an appointment we were treated to several visits by administrators to explain what it is, how they work and what to expect. I almost cried with relief during those visits because it was clear I didn’t have to navigate my way through this alone and would have expert help. I above all wanted K to feel secure and that she could go through her process without worry.
Around that time K’s needs were quickly moving away from normal daily schedules. Things were happening to her that I didn’t know how to address or even what it meant in terms of seriousness. I was beginning to understand that I was a total amateur in a situation that needed real professionalism and experience. I was elated to learn that the services of the hospice team were available around the clock. The first thing that struck me about the people I met was how they absolutely loved what they were doing. These were people who exuded an amazing energy and compassion. I felt like I stepped into a world of magic, because for them it was magic. They were seeing the dying process play out almost every day and it was, as one person put it to me “as amazing as birth”. These people were living on the edge of life everyday and watching as people moved into the unknown, yet there was a pattern and a sweetness to it as well.
Hospice was an incredible blessing for K and me. Our idealism about dying at home was fine but without hospice I couldn’t have made it through as a caregiver and I am sure the experience for K might have been frightening at times and nowhere as comfortable or reassuring. Potentially it could have been horrific. The nurses were very clear about their practice of palliative care and did it with consciousness and concern for the individual. They knew what it took to provide comfort and allow someone to move through their journey with as little physical distraction as possible. They would not escalate the type of medication needed without certainty that the time had come. When, what I considered, odd things began to take place, they had seen it before hundreds of times and could handle it with grace.
At times a nurse, other than our main one, had to come over because of the timing. In that type of situation you fear of a lack of synchronization. What was impressive to me was the way they diligently took notes of every session, entered them into a shared data base so that any other person on the team could be up to date as to what happened last. They even met as a team with the doctor on a regular basis to go over the status of every single patient.
I was considered part of the hospice team as the designated primary care giver and I am forever grateful that once they got involved I never felt alone or unsupported. Despite the fact that these nurses were working with quite a number of cases they never showed a lack of patience, lack of responsiveness or a dark side.
I can’t say enough about my experience with the people from hospice. I’ve heard them referred to as angels, and indeed they are. Even to this day the hospice stays in touch with me to see how I am doing and to remind me of grief support groups meeting around the city. Hospice made it possible for K to get her wish of passing away at home with comfort, gracefully and with dignity.
I have to give a big shout out to the people from Family Home Hospice here in Las Vegas, I could never thank them enough for going above and beyond what could be expected of them and for caring so warmly and diligently for K and myself.