A friend’s grandmother recently entered hospice care. (Which, for confidentiality’s sake, may not be correct. It’s not his grandmother. And my friend could be a her rather than a his.)
This is all you need to know: my friend is tired. Caring for a loved one is exhausting.
Soon after the grandmother entered hospice, my friend 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” for caregivers. At the hospice where I work, that means a patient could spend several days away from their home and stay at our inpatient facility, a modified suburban house. With only six beds, space isn’t guaranteed. But if there’s a bed, a parent or spouse or other beloved can be supported while the primary caregiver rests—gets respite. There are other choices, such as briefly entering a skilled nursing facility or hospital. All hospices will have suggested options for respite time. Ask one of the hospice staff. They will have an answer.
Too often caregivers resist any help. Therefore, they don’t sleep. They eat poorly. They rarely leave home. Respite provides a way to regain strength or reclaim some sleep.
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), in . . .
“2016, a greater proportion of Medicare patients (27.9%) were enrolled in hospice a total of seven days or fewer compared to all other length of service categories.” [Italics are mine.]
For nearly three in ten families, that seven days or fewer 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. Let me offer two other suggestions.
Volunteers! First, all hospices have a cadre of volunteers. Hold it! You mean more strangers entering my home? Hey, I have been a hospice volunteer and a rigorous process of background checks was required. Though there are unfortunate exceptions, most hospice volunteers,
- Truly want to help at a tough time for families
- Likely have experienced a loved one’s death
- Are trained and have had background checks
- 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. Getting out of the house for an hour or two can be helpful.
Chaplains! 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. But what if you’re an atheist? What if your loved one can’t stand organized religion? What if you’re spiritual and not religious? What if 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. Talking with a chaplain for an hour or so can be a helpful “break.” When serving as a chaplain, I had many chats with patients where God and/or religion was never mentioned. But what mattered to that patient was at the top of the agenda.
“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. What if he or she dies when you are away? What if . . .
And you are right. All of those “excuses” are honest responses.
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 the respite—for your loved one and for yourself.by