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.

Thanksgiving

The fourth Thursday of November is celebrated as Thanksgiving Day in the United States.

With so many changes in our family in the past few months, our Thanksgiving was quiet, with just spouse B, daughter T, and my dad Paco here for dinner. B did all the cooking – turkey, two kinds of dressing, mashed potatoes, rutabaga, acorn squash wedges, baked onions, and cranberry orange relish, with apple and pumpkin pies for dessert. It was a lot of food for four people, but we all enjoy having the leftovers. We are in the process of making turkey stock with the carcass and vegetables, something I learned from Nana growing up which has recently come back into food-fashion.

We ate midday here and, at almost the same time, daughter E was eating a Thanksgiving dinner, five time zones away, in London. She had made turkey and trimmings and pies for her daughter ABC, spouse L, and his parents with whom they are making their home. It’s nice that E and L want to keep some United States traditions to pass on to ABC, along with British ones. She is a dual citizen, at least until adulthood. It will depend on the rules in place when she turns 18, whether she will have to renounce her US citizenship to remain in the UK.

Still, she will always be able to celebrate Thanksgiving and remember the Thanksgiving celebrations of her childhood.

SoCS: the end of no-shave November

Every November here in the United States, there is an awareness campaign for prostate cancer. It is called No Shave November and people participate by not shaving for the month. There are also fundraisers organized around the event.

My husband B has participated in this initiative in honor of a co-worker who is a prostate cancer survivor.

It is now December fourth, but B still has his new beard! He has been getting lots of positive feedback on the look and has decided to keep it, at least for another month.

For him, it may be no-shave November and December – and maybe longer!
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Linda’s prompt for this Stream of Consciousness Saturdays was a word beginning with “sh”. Linda did everything in a timely manner; I am the one not posting until Sunday!  😉 Find out more here:  https://lindaghill.com/2016/12/02/the-friday-reminder-and-prompt-for-socs-dec-316/