When I wrote my prior post about Hospice, it was from my view of someone who had experienced their help in the 11^th hour. Which was helpful, supportive and very much needed by the person who was actively dying (and me). But because I found them in the bottom of the 9^th, I had no idea how much more they could help the person AND the caregivers.

Earlier this year, I took the onboard training to become a hospice volunteer. It was a whole day training, 9-5 and another 10 hours on online modules along with background check and drug screening. I may have also had to provide references. All this is not to scare you off doing this if you want, but to show how much they value the people they provide care for and want to make sure they are helped properly.

Once I “graduated”, I could select where I wanted to help and the list was longer than I had expected.

I am going to back track. I was visiting with a friend who was visiting with a mother figure (let’s call her Q), who had been diagnosed with cancer. She was mid 90s and declined to pursue curative treatment. My friend made a comment that I had just finished hospice volunteer training (backstory my friend later told me that she knew Q was anti-hospice). Q asked what exactly I did. I explained some of the avenues I could help as a volunteer and other services that they offered. She was adamant that she was not giving up. And I agreed that she was not, but maybe hospice service could help her stay in her home longer AND more importantly, keep her quality of life as pain free as it could be. We talked about other things, spring flowers and her childhood on the farm. Later she asked, how would I do this? I said either your cancer doctor can refer you or you can self-refer, and they can work with your care team to determine eligibility. And I left her the phone number.  She did call, they did help and while I was not part of her official care team, I felt I helped make hospice more understandable, less scary and more accessible.

Back to the things I could help with: I could do one on one visits both in hospice house and nursing homes. I could send happy cards to those people who might be farther away. These aren’t pen pals more just sending a card with a note every 2-3 weeks that might talk about the flowers blooming or something to jog a memory, less about me, more letting them know they are being thought of. I could do behind the scenes admin work, preparing blank patient files, mailings, and putting stickers on tiny boxes of chocolates for events. I could help with events as the grief center has quite a few annual support events to help people with their grief. In those events, you can help clean up or be a hand out greeter, etc. One of the ways I do help is caregiver respite. This is when I go into someone’s home for up to 3 hours and sit with their loved one as they go out. Maybe it is an errand or a doctor’s appointment, a meeting or even just to get OUT. There is no wrong reason to say, hey can someone come and sit with my loved one while I get out? Being a caregiver is SO HARD. We have talked about it. I love this sort of volunteering because I know it helps that person so much. And it isn’t about me. I sat the other day for 3 hours while Growing Pains played. So much so that Netflix asked if we were REALLY still watching. I watched my new friend to make sure that they didn’t need anything and offered a tissue or another throw when needed. Answered the same question multiple times and just allowed myself to sit and be. Win for all of us.

I also signed up for Watchful Passage. This is along the same lines as NODA (no one dies alone). It provides a comforting, compassionate presence during the period of active dying and at the client’s passing. Examples of how this is needed? The Client is in their 70s, parent is in their 90s and in poor health and doesn’t feel able watch the child die. We might sit with the client and be in contact by phone with the parent. They know the child did not die alone. The client lives here, is actively dying and the family members are overseas trying to get back but are not going to get here in time.

This is a list of some of the things the organization I am working with provides. It might be different in your area, but they also might be able to guide you:

• Medical services by a hospice physician in addition to the patient’s physicians
• Nursing visits with hospice-certified RNs
• 24-hour RNs, on call for questions, emergencies or visits
• Medications for symptom control
• Medical equipment and supplies
• Therapies as needed to enhance quality of life
• Social worker services
• Home health aide visits
• Spiritual support
• Volunteer services
• Emotional support for patients and family
• Grief support for family members

One more thing, I have had people tell me that hospice killed their loved one. Lots to unpack with this. First off, it may feel that way to the person. They weren’t ready. Maybe there were unfinished feelings or issues. I think it frequently feels too soon for the survivors. I don’t know how many funerals I have been to that I have said, “I am so sorry for you, but I am glad “Q” is no longer in pain”. (I normally follow this with a nice memory I have of the person).

When a person is in pain (dying can be painful, the body slows down working and maybe the disease is causing pain), the body is in flight/fight mode. It is hard to let go when you are in a fight mode. Part of what hospice can provide is morphine or other medicine. The goal is comfort measures. But those are moderated, there are legal levels that can be prescribed but it is not devil may care. However, once the body receives the painkiller/sedative, it lessens the fight mode. The body can relax and with that may come a peaceful death.

Even having used hospice services at least four times, I had no idea how many more they can provide and how much they can help in some of the most difficult times in your life.