Two weeks in a row with this article entitled 8 Secrets! As with the prior essay, I will confess to intentional deceit by posting a headline that experts claim entices more readers* to read. Each represents helpful information when considering and/or entering into hospice care. Since I again wanted to keep these Substack offerings at a manageable length, I now conclude with the #5 through #8 not-so-secret secrets.
#5 – A Good Question to Ask: What types of volunteers do you have?
Every hospice has volunteers to provide additional support for families. Talk to your nurse or social worker about requesting a volunteer. But I urge you to also ask about any unique talents in the volunteer “pool.” Would you like a visit from a masseuse? A musician? A hairdresser? A dog-walker? Someone with a background in theology, a military veteran, a rock climber or . . .?
Every hospice will have multiple volunteers with diverse backgrounds. They all want to spend time with hospice patients. My hospice has had a volunteer that cuts hair and another volunteer that plays a portable dulcimer when visiting. How about a trim or a concert? And I also recognize, since the depths of the Covid pandemic, all volunteering with hospice (and elsewhere) has been impacted. Many agencies are still trying to rebuild their volunteer staff.
Maybe no volunteer will match your interests or hobbies, but unless you ask . . .
#6 – Patients die quickly . . . or live longer than expected. Hospice is not a scheduled, predictable death.
Six months or less to live is the mantra and mandate related to hospice care. Anyone deemed “hospice appropriate” has an illness that will likely lead to death in about six months. Because this is the set guideline, most doctors and other hospice medical staff will give this as the best answer to the inevitable question: how long do I have to live?
Even when a patient has a devastating cancer, and a thoughtful, candid oncologist informs the family that only days or weeks remain, some live well beyond that “prediction.” The reverse is equally true. All the trusted experts conclude that someone has many months of life and then death comes in a day or two. We often ask, “Why?”—But there is no easy or comforting answer.
Families are stunned by sudden deaths. And then there are the exhausted families that wonder if a loved one will ever die.
Because there must be guidelines, six months is the message. But all we have is this moment.
#7 - The chaplain will help with a service after the death.
I hope patients (and families) welcome the chaplain into their home soon after starting hospice. Get to know each other! Since I’ve been a chaplain, I think one of the best parts of spending time with the chaplain involve what they don’t do! He or she won’t give you more pills or encourage you to fill out more forms! They will share coffee and a chat. They will listen to your stories or fears. If you want, they will pray with you.
Whenever you meet your assigned chaplain, please know that he or she will gladly assist with a service for your loved one after the death. If you already have a minister, this likely won’t matter. But many aren’t affiliated with a faith community. With others, a long illness may have caused a slow drift from many relationships, including their congregation.
You may ask the chaplain to help with the service after your loved one’s death because he or she has become “like family” in your time with hospice. You may ask the chaplain you have never met to help because you simply need “someone.”
For whatever reason, just ask.
#8 - Even after death, hospice supports you.
While each local-to-you hospice has different resources, all hospices must (based on Medicare rules) provide ongoing support to families and friends for a little over a year after the death.
This may include letters, material on websites, phone calls, access to grief counselors, grief support groups, and workshops. Even hospices with limited resources will likely be aware of, and can recommend, support groups and therapists in a person’s area.
After the death of your loved one, a hospice team member will probably tell you that someone from grief support (or bereavement support) will contact you. Some say, “No thanks.” They can work things out on their own. Or they have a rabbi or priest or imam for advice and comfort. I encourage you to say, “Yes, they can contact me.” How you feel “now” may not be what you feel “later.” There is often a blur of activity in the weeks following a death, and then the funeral is over, family departs, friends return to their routines, and your home (and life) may feel . . . different.
Access to professional, caring support can help. I often say that grief is tricky . . . and rarely in a good way. The hospice that helped support you during a loved one’s dying can be there for you as you try to continue living with loss.
#9 – Well, there’s no bonus secret, unless you have one?
What do you think people need to learn about hospice care that they may not know?
*Supposedly, headlining a numbered (like 3, 8, or 11) list causes more Internet buzz. Go figure! And who doesn’t want to know “secrets?” Like secrets about Hollywood stars or the best secret hiking trails according to park rangers? Well, I tried with hospice . . .
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Photo by Sander Sammy on Unsplash
My book, A Companion for the Hospice Journey is available at Amazon.
Thank you for sharing the remaining secrets.