I’ve been a Hospice volunteer for a few years now. Hospice is an organization that helps patients and families at the end of life, who have decided they will no longer seek a cure for their illness, but rather will attempt to stay as comfortable as possible and live as fully as they can in the time they have left. Ideally, the Hospice patient will die at home, but sometimes patients need skilled nursing care. When a patient is referred to Hospice, they get a whole team — physician, nurse, CNA, social worker, chaplain, dietitian, etc., and they get assigned a volunteer if they want one. Hospice volunteers do a wide range of tasks, from relieving tired family caregivers, to running errands, to sitting with the patient and talking, watching movies or reading with them. Volunteers are trained to provide companionship and support in whatever way is needed, short of medical tasks.
I have had several patients, or “friends”, since I started with Hospice, but I am still a newbie. I attend volunteer support meetings with people who have been doing it for 20 years or more. I can’t express how much I admire those long-timers, or how much they have taught me. They are kind of like the Skin Horse in the Velveteen Rabbit. They aren’t just full of wisdom, they are full of lovingkindness, and it’s my hope that one day a little of their sheen will rub off on me.
That said, I have been doing it long enough that I am starting to notice patterns. Of course, every patient is singular — their lives, their deaths, and everything in between. But it hit me the other day that one near constant is the role of romantic love in their lives, even at the end.
I’ve noticed that when I have a patient who is well enough to be read to, they often prefer love poetry (and they always, always, have a volume called “100 Greatest Love Poems” somewhere in their house). If they are well enough to hear music, they will ask for “romantic” music, like the big band music of their youth (Glenn Miller, Benny Goodman and the rest). If they want to watch a movie, it’s West Side Story, Casablanca, or His Girl Friday.
It is a cliché to say that as you lay on your deathbed, you don’t talk about your career. This is absolutely true in my experience. I have had patients who have had amazing academic careers, won Purple Hearts, hobnobbed with political leaders around the world, you name it, but it’s the last thing they want to talk about. Instead, they want to talk about their children and grandchildren (and great-grandchildren).
But most of all, they want to talk about the loves of their lives.
Usually, they have lost their spouse or partner by the time I get to know them, but it doesn’t matter whether it happened last year or 40 years ago, the memory of that person is still alive to them. They tell me about their partner’s virtues, foibles, hobbies, youth, and — if they can stand it — final days. They love to show me pictures of their wedding, and if they can no longer see them, they describe them to me as I look. If they have the energy to say only three words, I guarantee their spouse’s name will be one of them. If they are in pain, and they call out a name, it is their loved one’s. If they reach out blindly for someone I can’t see, it is for their lost love.
I’ve had patients who haven’t been blessed in romantic love — some have been long divorced and never remarried — and, surprisingly, they often want to talk about love as well. Whether a patient has been lucky in love or not, they often seem to focus on that specific kind of close personal relationship at the end of life, on how love has mattered to them, or not, and why.
I got the idea for this post from something that happened the other day. I was visiting with a new “friend”, who happens to be blind, and quite taciturn, and we were trying to figure out what I could read to her. It’s been a bit of a challenge this time around to be helpful (I sometimes feel like I am just useless, underfoot and unnecessary, and then I remember it is not about me). I suggested poems, the Bible, a few other things. She just stared straight ahead, shaking her head almost imperceptibly at each idea. Finally I said, “How about Nora Roberts? Have you ever heard of her?”. She lifted her head, turned towards me and said, clear as a bell, “Of course I have heard of Nora Roberts. Everyone loves her!”
We are two chapters into Sea Swept.
What a fantastic post. And anything else I’d say right now is too inane :X
Thank you.
Great post! And what a wonderful way to help others. I admire you.
Okay, that post got me all choked up. People who have time to reflect on their lives while dying KNOW what matters. How sad that some people will die suddenly, without that chance. Shouldn’t we all live our lives with that in mind?
What a wonderful post. You’re right–people do want to talk about love at the end of their lives, and pretty much nothing else.
And duh, *everybody* knows about LaNora.
@ JenB:
Yeah, but if I was dying, I’d want me some K A Mitchell or Tamara Allen to send me into the light
(Never read anything by Ms Roberts, and am not likely to.)
A very moving post, Jessica. Reminds me of the emotions and ideas captured by Don McKellar in his wonderful film, ‘Last Night’.
A single chimpanzee is not a chimpanzee, and a human is not a human in isolation. Our relationships with others define us and make us, and give us comfort. Love may not be the cure for every known ill but it’s the most powerful force exerted by humankind.
Before my mother died last spring, she had been in extended care for severe stroke effects for about a year, and because she spoke so rarely and her speech was so limited, we never knew how much she knew or felt.
That said, the one thing that seemed to give her pleasure (besides looking at photographs of the handwork she had done and family), as indicated by the sparkle in her eyes, was to have her cherished Nora Roberts books read to her. The secondary, and not insignificant, benefit was that it gave my father something to do during his daily visits.
Ron had always been a reader – that’s one of the reasons I knew he was ‘the one’. Towards the end he just couldn’t read anymore so I offered to read to him. It was challenging trying to figure out what to read but I finally decided on the Stephanie Plum books. I couldn’t have picked anything better! They were funny and brought laughter at a time when it was very rare. It became a very special time – 1:00 pm every afternoon as I read to him about Stephanie, Joe, Ranger, Grandma Mazur and all her adventures.
What a lovely post! I was going to recommend the second in that series to you on Twitter the other day. Hope she’s enjoying it. : )
It’s hard to type now because I’m crying, but I want to commend you on doing such important work. I’m helping a friend with cancer now, and I know how hard it is, so you must be a very special person. I think some of the sheen has definitely rubbed off already.
I was also wondering if you’ve sent a copy of your post to Nora? I think you should & that she would really appreciate it.
Thank you for posting this, Jessica–and thank you for what you are doing for both the patients and their families.
Apropos of your theme:
“Britain’s longest living married couple have celebrated their 81st wedding anniversary.
Frank and Anita Milford, who live together in a nursing home in Plymouth, Devon, exchanged vows on 26 May, 1928.
Frank is 101 and when Anita also turns 101 next month, they will be the only living couple in Britain to have both reached a century.
They say they still have little arguments, but will always have a kiss and cuddle before they go to bed. ”
http://news.bbc.co.uk/1/hi/england/devon/8067752.stm
It’s sad that they must know that they can’t have much longer together, but so sweet that they make so much of what time they do have left.
I’m so glad folks seem to appreciate this post.
One of the things a Hospice or any other kind of volunteer will say is that they get more than they give, and this is another cliche grounded in truth.
I also want to recognize the unsung efforts of the unpaid family and friend caregivers, like @ Cyranetta, @ Karen W.,and @ KristieJ. I pitch in for a few hours a week. They are the support and the strength all the other many hours. I salute them.
@ Ann Somerville: Thanks for the link to that wonderful story!
All my Hospice friends so far were born in the 1910s or 1920s. It will be funny if I am doing this in 30 years, and people start asking me for some steampunk or paranormal or MM!
What a wonderful post! How sweet and touching. And wow, what an incredible journey it must be to be a hospice volunteer.
Jessica – What a wonderful and moving post. It just goes to show that when the rest falls away, what you’re left with is love.
Thanks for the important work you do. It’s incredibly generous of you to give of your time.
Tears, then laughter – my favorite kind of blog posts.
I could almost read between the lines “Of course I’ve heard of Nora Roberts you silly girl. Who hasn’t?” LOL
What a wonderful post! Smiles & tears & memories & books.
~Amanda
Thanks again everyone.
I just got the call notifying me that my patient, Mary, died yesterday.
I will finish reading Sea Swept in her honor.
What a wonderful post. Thank-you.
(((Jessica)))
In Heaven there are Nora Roberts books beyond count–as there are on Earth.
And in Heaven you never lose your places in books. Mary will continue in SEA SWEPT right where the two of you left off.
What a gorgeous post, Jessica. I got teary eyed reading it.
Ah, so sorry to hear about Mary, Jessica. I’m sure she knows that you’re finishing SEA SWEPT in your honor. (HUGS)
Of course, that was supposed to be HER honor.
Oh, so uplifting and so sad. I’m thinking of you.
I’m so glad I read your other post regarding NQAH because I saw the link for this post. This is one I read a few days ago on my phone but didn’t comment cause I hate typing long things out on my qwerty.
God bless you for the work that you do! I’ve been going thru a situation with a loved one and for a few months there was talk of hospice care and what it entails and I really don’t know how the hospice workers do it. Hats off to them (you) for making things as comfortable as possible for hospice patients and their families. My family was blessed in that my loved one has made a turn for the better but in all these months in hospitals and seeing other patients and their families go thru difficult times, it was just as you said, it always comes back around to their love for their family and friends.
My condolences to you and Mary’s family. But what a blessing that she had you in her life to provide some comfort.