A friend’s grandmother recently entered hospice care. (Which, as usual, is only marginally accurate, though mostly true. It’s not his grandmother. And my friend may be a “she.”)
This is all you need to know: my friend is tired. Caring for a loved one is exhausting.
Soon after my friend’s grandmother entered hospice, he planned respite time because of being weary and worn down. What? Respite? What’s that? The Medicare benefits of hospice allow for an occasional “break” from caring for a loved one. At the hospice where I work, that means a patient could spend several days away from their home and stay at the modified suburban house we have for patients. With only six beds, space isn’t guaranteed. But if there’s a bed, a patient can be supported while the primary caregiver rests . . . gets respite. There are other options, such as briefly entering a skilled nursing facility or hospital. All hospices will have suggestions for respite time.
Too often caregivers resist help. Therefore, they don’t sleep. They eat poorly. They may never leave home. Respite provides a way to regain strength.
Because many avoid thinking about any subject related to dying, patients frequently come to hospice within days or weeks of death. According to the National Hospice and Palliative Care Organization (NHPCO), the “median (50th percentile) length of service in 2012 was 18.7 days, a decrease from 19.1 days in 2011.”
The last 18.7 days of a loved one’s life can be rugged. How I wish more people would take advantage of the hospice benefits, with families entering hospice earlier and receiving more assistance. And therefore, during the hospice stay, individuals and families can take advantage of the options.
What options? Well, respite would be one. Here are two other suggestions . . .
All hospices have a cadre of volunteers. Hold it . . . strangers entering my home? Hey, I’ve been a hospice volunteer and a rigorous process of background checks was required. Though there are unfortunate exceptions, most hospice volunteers (#1) truly want to help at a tough time for families, (#2) likely have experienced a loved one’s death, (#3) are trained and (#4) are fellow humans that know the importance of #1. A volunteer means a family member can grocery shop, get to a bridge game, take a walk, pick the kids up at school, share lunch with a friend and so forth. There are many forms of respite . . . and getting out of the house for an hour or two can be helpful.
Don’t ignore the chaplain! Yes, a nurse is required . . . and those helpful social workers know the forms to complete and the agencies to contact and so much more. But a chaplain serves a wonderful purpose. As someone who has been a chaplain, that purpose doesn’t involve forcing, flaunting or foisting faith on a patient or family. Maybe you’re an atheist. Maybe your loved one can’t stand organized religion. Maybe you’re spiritual and not religious. Maybe you’re angry with God (or the Pope, the President of the Mormon Church, or Tom Cruise and Scientology). With all that being said, the chaplain is the hospice team member with the least “agenda.” Dying touches our souls, our fears and our longings. It can be good to talk with someone that won’t ask if you have your POLST completed and won’t increase or decrease your medication. A chaplain will listen and “meet” you wherever you are on your journey. There are many forms of respite . . . and someone to talk with for an hour or two can be helpful.
“Hold it,” you mutter again—you being a dedicated and exhausted caregiver—“There’s no way I can take a break.” You promised to be there in sickness and in health. No one can care for your loved one like you can. And what if he or she dies when you are away? And what if . . .
And you are right. All of those “excuses” are honest responses. But . . .
We want the best possible quality of life for the ill and dying loved one. Caregivers are part of that “quality,” so (please) consider taking advantage of a respite—for your loved one, for yourself.
(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)
Beach walk from here.by