In 1989’s Field of Dreams, Kevin Costner’s character famously heard, “If you build it, he will come.” If you haven’t seen the film, I won’t reveal the enigmatic “he” that eventually arrived at the baseball field built on an Iowa farm.
I usually recall the quote as “If you build it, they will come” . . . since crowds did gather at that heaven-like spot of the Midwest.
Field of Dreams was a sweet fantasy, but the reality of hospice means that many strangers will also arrive at your house. While hospice care happens away from a person’s residence, 58% (according to 2014 data) of all hospice patients remain in their homes and the “team” from hospice knocks on your front door. Part of hospice’s appeal is allowing people to continue living in the place they know best: home. For some families, that appeal is undermined by the flood of “strangers” from hospice phoning to make appointments and soon parking on your street.
If only it was one “he” that arrived at the busy “field” formally known as your lovely, quiet home!
First it may be the admitting nurse that visits. Maybe she or he actually came to the hospital, and they shared about the great things hospice will do. You heard hospice’s wonderful promise about the patient—your beloved—being able to return home. Where do you want to die? (Research I’ve read indicates 7 in 10 prefer home.) You may never see the admitting nurse again once you’ve agreed to hospice, but I hope it was a good experience. I hope she helped you understand the hospice benefits. I hope he was able to answer many of your pressing questions.
But how carefully could you really listen? You are stumbling through one of the most traumatic events of life. Regardless of how well that admitting nurse (or other staff) first explained hospice, or how well you paid attention . . . surprise! Here come those next strangers.
One stranger will be the patient’s case manager*. She (or he) is an RN, a registered nurse and the team leader. This nurse may have an LVN regularly working with her. Maybe the Licensed Vocational Nurse is also at the first visit, but you will often see her in the subsequent visits. You expected this: you or your loved one have a terminal illness and need a nurse’s expertise.
Then the social worker calls—another stranger—and he hopes to come over to your place. How about now, he might ask? Or what about this afternoon or tomorrow morning?
Soon after that, a chaplain may check to see if she can swing by to meet the family.
Who are these people? Did that first admitting nurse distribute your phone number to all health care personnel in your area code?
After wearily telling the chaplain that next week might be better for a first visit, the volunteer coordinator phones. She sweetly explains that if you need someone to be with your loved one during your weekly card game or tennis match, or need to go shopping, one of the trained hospice volunteers can stay at your home for a few hours. After all, your loved one shouldn’t be alone.
You told the volunteer person that you’d think about it. (As in, it’s easier to put someone off rather than yell, “No way!”) Who wants more folks—strangers—at the door?
At her next visit, the nurse suggests a home health aide. The HHA (those initials drive you batty!) can assist your loved one with the once-simple personal hygiene needs that have become a huge chore. But still . . . another person?
They keep calling and coming. Because you are polite (and worn down from exhaustion), you weaken and permit the chaplain to visit. You put her off last week, but there she was again . . . gently talking to you on the phone and wondering if you might have a smidgen of time for her visit in the next couple of days.
A new nurse arrives because your case manager nurse had the day off and you needed help with the medication. Yikes, a new face and name!
I guarantee you, the first week, and even weeks, will feel like an overload of staff—of strangers—that can be intimidating.
And let me also be blunt: you may not like all the “team members” who are serving you. After all, these are people entering your private space during an awful season of your private life. If for some reason, one of the “team” rubs you the wrong way, call hospice and let them know. It’s very likely other staff can be assigned.
More bluntness! Many of the first visits will be awkward. Your loved one is dying. All these strangers who seek to help and support you are, indeed, strangers at first. You can’t remember their names. Your knee-jerk reaction is you don’t need a social worker or a home health aide. How can you not think that way? But I hope you risk a “Yes” to their offers of help.
The social worker knows resources, like funeral planning and which forms to complete for veteran’s benefits. They can help you search for in-home hired help. They can gently explain to your frazzled just-off-the-plane family member how serious this illness really is. That “strange” social worker can become one of the best persons you’ll ever meet.
Since you’re spiritual but not religious, who wants a chaplain? Except you fret about your younger daughter wanting you to “be saved” and “accept Jesus” and you’d like to talk to someone who won’t judge you or your daughter. Or, once you realize the chaplain isn’t there to make you believe things you don’t care about, you ask her—and your heart is so heavy with this request—if she’d help plan the simple graveside service that will come sooner than you ever wanted.
The HHA, who now goes by their first name rather than the weird initials, is the person your beloved looks forward to the most. Hey, it feels great to be clean!
Every hospice has similar resources. Every hospice also has different resources. That admitting nurse that first explained hospice likely left material providing an overview of the options. You rightly ignored most of them. One hospice I worked for had a nutritionist to give input on what to eat and drink. My current hospice has a volunteer with a portable dulcimer who’ll play lovely music . . . just for you! As you get to know your hospice team, ask again (or for the first time) about the potential resources that are available.
Do some have bad experiences with hospice staff? Yes. My family told one agency we weren’t interested in them because the admitting nurse seemed a poor listener. But we also had excellent, compassionate care from other hospices. When my father needed hospice at his memory care facility, the volunteer that regularly visited always called Mom to tell her how things had gone with Dad. She was grateful for a “stranger” caring for him . . . and her.
The vast majority of patients and families soon realize that one of the best decisions they ever made was to open their front door to a kind nurse or a knowledgeable social worker or an HHA who made sure the water was the perfect temperature before the sponge bath began.
Please, welcome the strangers . . .
*Different hospices may have different “titles” for the hospice staff.
(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.)by