Hospice month

November is National Hospice and Palliative Care Month in the United States. Some people don’t realize that palliative care exists outside of the context of hospice. Palliative care addresses pain that affects someone from any cause. People who are dealing with chronic or severe pain can consult with a palliative care specialist, who will put together a pain management plan for them. Hospice care involves palliative care for those in their final weeks/months of life.

While the alleviation of pain is an important part of hospice care, hospice is meant to serve other needs for the person who is dying and their loved ones. There are social workers and chaplains for help with personal, social, and spiritual needs. Aides help with physical care and companionship. Volunteers come to keep the patient company or offer special skills, such as massage, to relieve pain and stress. Nurses are the driving force that coordinates care. They visit as often as needed as circumstances change.

Hospice as a philosophy is meant to unfold over the final weeks and months, but sometimes is only called in for the very last days. For decades, hospice care providers have been advocating for referrals to be made enough in advance that there is time to develop a relationship with the patient and their loved ones, so that they can provide services while the patient is still able to interact. There are, of course, instances in which that is not possible, when an accident or final illness occurs without notice, but it is still unfortunately common for primary care physicians and specialists to delay hospice referrals.

We experienced such a delay with a family member, so that hospice was only called in for the final day. Even though time was brief, the experienced nurses were able to give us the tools we needed to relieve pain and recognize the progression of symptoms when our loved one was near death.

Our experience with Nana was on the other end of the spectrum. She was under hospice care for fifteen months, was decertified and off hospice for four and a half months, and back on for her final ten weeks. Some people commented to us that we had called hospice in too early, but that wasn’t really the case. Without hospice care, Nana would have died much sooner. At least twice, they were able to treat symptoms that would have caused fatal repercussions, had the hospice nurses not been able to get them under control.

It is true, however, that there are a lot of rules, especially with insurance, about hospice care. Those rules are set up for people who have a fairly accurate life expectancy estimate, such as someone with late stage cancer or kidney failure. With something more unpredictable, like certain types of congestive heart failure or pulmonary disorder, the hospice rules requiring a certain amount of decline over a given time don’t fit very well. I hope that, over time, the rules will be changed to make hospice care more accessible.

As National Hospice and Palliative Care month comes to a close, I salute all the compassionate nurses, aides, volunteers, social workers, chaplains, and administrators of hospice. You help people at one of their most vulnerable times. I wish you the strength and peace needed to continue in such important work.

a rainbow at Mercy House

On Wednesday evening, I drove to Mercy House, the hospice residence where my mother lives, during a sun-shower after a heavy downpour. Given the time of day and the moisture in the air, I started to look for a rainbow. When I turned east, a full rainbow appeared before me, one end of it resting on Mercy House.

What I didn’t know at the time was that Phatar, a twelve-year-old who was also in residence at Mercy House, had become unresponsive and would pass away the following day, surrounded by the love of family, friends, and caregivers.

On Friday morning, the door to Phatar’s room was open, his bed made with the quilt pulled up. Near his pillow was a little memorial with a flower, the United States flag that had been on his door, a little poem that had been posted in his room, and his handprint in green paint on white canvas.

This morning at church, Father Clarence told Phatar’s story during the homily, about his cancer diagnosis, about his final months at Mercy House, about his desire to receive Jesus in the Eucharist and his baptism, and the comfort that brought him in his final weeks. There were smiles and tears as we listened.

Our mix of emotions in reacting to death is always complex, but I think most people have a particularly strong sense of sadness at the death of a child. It has also been sad watching Phatar’s mom these last months, suffering through every parent’s nightmare of the illness and death of their child. Still, I am grateful to have met Phatar and to know that he is now at peace.

The next time I see a rainbow, I will think of him.

birthday sandwich

I did a One-Liner Wednesday post (with adorable picture) for ABC’s first birthday.

The next day, ABC and her mom, our daughter E, left London, where they had spent eleven weeks visiting dad/spouse L, his parents, sister, and extended family, to return to our home in upstate New York.

The following day was daughter T’s birthday which we celebrated at one of our favorite local restaurants. ABC charmed the staff and other patrons as we celebrated both birthdays.

ABC managed not to have a problem with the five hours’ worth of jet lag, although the trip was much more taxing on E.

We are settling back into being a household of five. T and B had taken charge of childproofing prior to ABC’s arrival and we have managed to avoid any major catastrophes so far.

One of the things that happened while E and ABC were in the UK was the move of my mom, known here as Nana, to Mercy House, a nearby hospice residence. Everyone loves ABC’s visits as she toddles down the hallways and around the common area and in and out of Nana’s room. She brings smiles to everyone and has made some new friends.

One of her new friends is a resident. He is only twelve years old. His presence here reminds all of us to treasure each day that we are given, that youth is not a guarantee of good health, and that the presence of family and friends and care of staff and volunteers can bring peace even in the most difficult circumstances.

 

Saying Good-bye

I am thankful that a hospice newsletter that I was reading referred me to this article entitled:  How to Say Good-bye When Someone You Love Is Dying:  Regrets and Lessons From Grieving Survivors.

I am also thankful that it isn’t information that I need to use right now, but I am grateful to be able to store the link here in this post for a time in the future when I will need to be reminded.