Amy Getter, MS, RN, lives in Eugene, Oregon, where, in her own words, she “works with people with life-limiting illness who are enrolled in a hospice wherever they consider ‘home.'”
by Ramon Peco/via Flickr
I fondly remember becoming acquainted with my first “parlor,” in a 100-year-old home that my family moved into during my teen years. The walls were dressed in faded, peeling, paisley-patterned wallpaper and a tarnished brass chandelier hung from the ceiling. French doors closed it away from the rest of the living area, giving it a slightly mysterious aura. Far-off city lights blinked at me from elongated paned windows. I immediately claimed it as my bedroom.
The word parlor (derived from the verb “to speak”) may have first been used in medieval monasteries. An “outer parlor” was designated for receiving outsiders and attending to business needs and the “inner parlor” was for the monks’ private use. During the mid-19th century, formal parlors evolved and could be found in homes like the one my family lived in.
Weddings, funerals (being “laid out”), and other social events occurred in the parlor. Home businesses emerged (such as “funeral parlors”—offering an option for laying out the deceased in someone else’s home!). In recent years, care of the infirm and preparation of the dead have been removed from the home, along with their unpleasant reminders of frailty and mortality, relegating the ailing to hospitals and nursing homes where they can die unobtrusively, apart from the daily existence of families.
I read a book when my children were young called Nana Upstairs and Nana Downstairs*—the story of a little boy who every Sunday visits the multigenerational home where his grandmother and great grandmother live. Nana downstairs makes meals and cookies and provides loving care for Nana upstairs, who sits in a chair, bundled in blankets. Little Tommy learns about families caring for each other, until Nana upstairs dies.
For many families, not only is Nana upstairs not allowed to stay in the home, but she is sent to a special “home” where strangers take care of her, and when she dies some strangers will take her body away in preparation for a funeral.
I have had an opportunity to see another way. Families still care for their dying loved ones, with the draining, tedious, burdensome yet also rewarding care provided at home. In some of the homes that I visit regularly,
- a son cares for his bedridden father during the nighttime, while his mother provides the caregiving throughout the day while the son is working.
- a wife cares for her senile spouse, her greatest worry that something might happen to her, his only caregiver.
- a mother moves from her home in another state to live with her dying daughter.
- a daughter takes a leave of absence from work to be with her mother, as her care needs become a 24-hour job.
- two close friends come and go every day to ensure their mutual friend has what he needs to stay in his home until he dies.
Then, when the time comes and the loved one dies, there is also another way. I have helped mothers wash and dress their babies’ bodies—that last loving touch of the earthly flesh before it is taken away. I have helped families wrap their dear ones in homemade quilts while awaiting en-route family members, dressed bodies in a favorite evening gown or other special attire, and helped lovingly arrange the quiet and beautiful body of a young mother in a silken shroud. I have “laid out” a wife in the shared bed for a husband to lie beside until the morning ends their last night together.
I worry that, in our haste to remove what is unpleasant, our society has literally lost touch with the dying.
The fear of being near the dying and dead can be replaced by memories that hold a magical place in our lives—memories of the final sacred moments of loving that soul who was housed here in an earthly body, and cared for by us, who have survived our loved ones. We can send them out with love that transcends the gritty, messy, and exhausting care of the dying.
I give tribute to all the loving hands, those friends and families who chose another way. In the end, intertwined with memories of living, are the memories of dying—yes, harsh and difficult, but also infused with sacrifice, compassion, and great love that covered the unsightly parts and provided balm to the living.
. . . Don’t be afraid, come into my parlor.
*Nana Upstairs and Nana Downstairs, by Tomie dePaola
Excellent, perfect, true! This is one of the best pieces I’ve read on the subject, which is my life these past seven years. When I visit my families (we don’t care for patients, we care for families) I explain that when the patient dies they should call me –when they are ready. Perhaps they should take a deep breath and as my mother suggested, put on a pot of tea. Then when they are ready, call me. … I, too, cared for a gentleman who called me at 9 P.M. one night. I sat with him as he sipped a Scotch (“No, thank you…”). Finally I said, Now I’ll call the funeral home. “Thom, would you do me a favor? tell them to come tomorrow morning about 9. I want to spend one more night with my wife.” … Thanks, AJN and Ms. Getter for publishing this wonderful piece.
Thom Schwarz RN CHPN
Considering two of my older Aunties have passed away in the past month, this post touched a special part in my heart. Thank you!
This is so true. As my Grandmother entered the last phase of her life,my Mother & I(her primary caregivers)placed her in several nursing/rehab facilities in order to give her the best chance to return to her prior level of function before being hospitalized & having surgery. We discovered lots of patients that had been dumped there who never seemed to have any family visit. When it was apparent that my Grandmother had made all the progress she was ever going to make,my Mother & I brought her home. This is where she wanted to be. Shortly thereafter,we did get Hospice involved. This was one of the best decisions we ever made. Our Hospice experience was beyond positive. My Grandmother got her long desired wish to die at home with my Mother & me caring for her. My Mother & me got the 24/7 support of the Hospice Team which was
needed & greatly appreciated. It was extremely difficult caring for my Grandmother during the two weeks of her life,but knowing we were doing what she wanted & having the support of each other and then Hospice made it a bearable experience. Given the chance to do it again the only,the only thing we would do differently is we would bring Hospice in sooner.