The cruel vagary of NOT dying
Posted on 08/03/2009 10:08 pm by kagranju
Last night I spoke to my grandmother for quite a while on the phone. She’s in her early 90s now, and totally bedridden. She can be moved to a recliner, but she slumps sideways until she starts to fall out of the chair, and then she’s gently repositioned back into a supine position on the couch or her bed. She’s like one of the grandparents-in-bed from Willy Wonka and the Chocolate Factory, except no golden ticket is going to change anything for her. Nothing can. She will never get out of bed again, except to be taken for the occasional stroll around the neighborhood in a wheelchair, which exhausts and hurts her. After only a brief while out of the house, she asks to be taken home, where she is placed back on the couch or in the bed by a family member, or by one of her full time caregivers.
Her physical decline was remarkably rapid, and a bit odd. A daily runner until her late 70s, she continued her brisk walks around town until four or five years ago. But when my grandfather died of cancer, in November of 2006, her body just gave up, suddenly and dramatically. After a decade or so of arthritic aches and pains, and the occasional fracture due to osteoporosis – neither uncommon for a woman of her age – her soft, vulnerable bones suddenly turned to dust. Her runner’s muscles became rubbery and pointless, seemingly overnight. We put her to bed one day, and she never really got up again – not to do anything at all.
She’s so physically weak that she can’t hold a book for long, or a newborn great grandchild. She sits up for brief periods to eat her small meals, but that’s about it. Sometimes a physical therapist comes to her house to work with her, but she has lost all interest in, and connection with her physical self, so she is polite, but declines to do anything much. These days, the health care professional who comes to her house is a special nurse, who treats the bedsore she’s developed. The nurse helps family and caregivers learn the best ways to position my grandmother on the bed and on the couch, so the sore doesn’t get worse, because not only are bedsores terribly painful, they can also kill someone in her condition.
But while her tiny, 80 lb body has become a mere appendage, a floppy, useless, yet painful attachment, her head continues to work just fine. For someone with her level of physical decline, she’s in remarkably good working order mentally. So she is completely and totally aware of every single aspect of her incredibly frustrating situation. And she’s very, very bored. She watches a lot of TV news, and tries to tell the women who are paid to care for her stories about the celebrities being discussed by the talking heads on the screen. When Walter Cronkite died, she probably told her caregiver about the times she and he had lunch together at the Russian Tea Room. I am sure that when Farrah Fawcett died, she reminisced about her long and storied history with both Ms. Fawcett, and with Ryan O’Neal and family.
I have no idea whether the women listened or understood what she was saying. They are good and kind people, but they aren’t her friends. She finds their conversation tedious and uninteresting, even as she appreciates the fact that she’s totally dependent on them. They move her from her bed to the couch and back again. They dress her and bathe her and feed her. They clip her toenails. But they aren’t her friends.
She can no longer see well enough to read the history she loves. Her hearing is now so faulty that she can’t enjoy talking to her grandchildren and great-grandchildren on the phone, like she could even a a year ago. The longer she’s isolated from the world outside her house, fewer and fewer visitors come to see her. Her days end at 7pm, when she’s put to bed for the night. She tells me that she sometimes dreams that she can walk and run, that she’s laughing with 20 year old friends at the Chi Omega house, that she’s on a flight to the Montreal Film Festival, or off to visit a movie set in pre-1979 Tehran. She’s wearing her favorite Diane Von Furstenberg wrap dress – given to her by the designer herself – along with fabulous, strappy heels from her beloved I. Magnin in Beverly Hills.
But when she wakes up each morning, she’s back in her bed. Alone, immobile, old and helpless. Someone is paid to choose that day’s pajamas or baggy sweatsuit, and to put them on her. There is no need for her to put on any perfume or lipstick. No one will notice one way or the other.
And see, here’s the thing: she REALLY, REALLY wants to die. She’s a quietly devout Christian who is 100% certain of what awaits her on the other side. And after a life more interesting and exciting and full than anyone I’ve ever met, she has had just about enough of living as she is now. She is baffled by the fact that she continues to draw breath, and that her heart keeps beating, even though everything else about her body is all but dead already. She says she knows it’s sinful to second guess God’s plan for her, but DAMN!
When she tells me how much she wants to get on with her transition – to die – I tell her that I will miss her beyond all reason when she leaves us, but I also tell her I will be happy for her when she gets her wish, and she’s freed from all of this. And I mean it. It’s a very strange feeling, wanting someone you love with all your heart to be granted their wish to die. I sometimes feel very guilty about my feelings (almost as guilty as I feel about not being able to see her often enough). But I just can’t stand to see her so bored and helpless. It’s like she has one foot on either side of the Rubicon, but can’t move definitively in either direction.
Dying can be very, very hard. But sometimes, NOT dying is its own kind of awful.
08/03/2009 at 11:03 pm
You write beautifully. I wish her wish be granted. I would want the same.
08/03/2009 at 11:34 pm
Katie,
So well written and heart-felt. I know from my own deeply felt experiences how this is, that death is every bit half of life. I love this picture of your baby next to her~ the contrast reminds me of a poem I wrote when my mom died~ about the last time I saw my mom smile , which was when she saw a baby…. You’ve been so lucky to have your grandmom for so long, and even in (and especially in…) her misery, her soul is still growing. Her wish will be granted soon enough I’m sure…you are the grand daughter every woman should have…xo
08/03/2009 at 11:58 pm
I shared this on facebook. But I wasn’t sure if it would get lost in the feed for you that I did. This is a piece that will stay with me for a long long time, if not forever. It is a grand story.
08/04/2009 at 1:44 am
once again katie,your words touch the very depth of my heart. it is so beautiful.
ya know Elizabeth Kubler Ross had a very long, drawn out death…she said it was like being stuck in a plane on the tarmack with no idea when you will take off…and you cant get off the plane.
i send your grandma traveling mercies…
08/04/2009 at 1:45 am
I can empathize, Katie. My grandmother recently died at age 102. She was lucky enough to have a relatively mobile, healthy quality of life until the last year or so, but the last year was difficult for everyone.
08/04/2009 at 6:47 am
Have you tried books on cds for your grandmother? Many states have programs which allow individuals to order a wide range of books from a state library. In North Carolina, the program also offers equipment (the program is specifically for people who are elderly or legally blind). Obviously her nurses may have to help insert the cds, but this might be worth checking into.
08/04/2009 at 7:02 am
@Jessica – She does listen to some books on tape, but her hearing is making that increasingly difficult. But that’s a great idea in general. What she really loves is for someone to sit with her and read to her.
08/04/2009 at 8:11 am
What an incredibly moving description! My own grandmother is 91, relatively mobile and incredibly healthy considering her age; yet having lost the level of independence she knew she feels useless and burdensome to family. She, too, expresses surprise at her continued existance and an alarming desire to move on. I wonder if reading this would make her feel better, or worse?
08/04/2009 at 8:12 am
Made me cry.
If I was in the area I think I’d want to come hang with her for a while, just to hear the stories.
K
08/04/2009 at 8:15 am
This is so hard. My aunt who just died of cancer suffered so much. It is difficult for me to even talk about most of the time, the suffering was enormous.
My grandmother (who was 95 when she died) had dementia. It was honestly just as terrible because they have moments of clarity where they understand what is going on.
I hope she finds some relief both mentally and physically and that she can find peace.
08/04/2009 at 10:41 am
You made me cry. This was beautiful.
08/04/2009 at 10:43 am
I sincerely believe there is a fate worse than death and this sounds like it. What a great post.
08/04/2009 at 11:52 am
Great, great post.
08/04/2009 at 12:24 pm
When your grandfather was dying of cancer, he told me in the middle of one especially difficult night, “This is no way to live. It’s no way to die either.”
08/04/2009 at 1:23 pm
Beautiful writing, Katie. I’m so sorry for the state she is in.
08/04/2009 at 1:26 pm
My grandmother turned 94 a couple of weeks ago. Her health has declined, obviously, as well. She was an avid gardner, even few years ago. Now she doesn’t leave the house. She has good mental days and bad mental days, and I’m sure her hearing makes her more confused than she really is sometimes. It’s been so difficult to see someone so strong, decline.
I treasure the relationship that we have though. We have always been close but now she genuinely knows the adult I’ve grown to be and we have a very special relationship. She’s very reserved and quiet but has embraced Brenden in a way that touches my heart so completely. I know she sees what I see and that makes me love him even more.
I’ll be thinking of you and your grandmother.
*Could you pay a high school student to read to her? I’d have loved that job in high school!
08/04/2009 at 1:30 pm
@Catherine – It’s wonderful that you have that relationhip with your grandmother. I adore mine as well. I am more like her in more ways than I am like anyone else in the world.
Your idea about hiring a student to read to her is SUCH a great one! I am going to check on that ASAP.
08/04/2009 at 2:15 pm
Catherine, what a lovely comment. So nice that she sees what you see.
08/05/2009 at 12:51 pm
After his wife died, my great-uncle stopped taking his blood pressure medicine. Last year, he waited until he could vote in the presidential election (!) and then stopped eating and drinking. It still took several weeks for him to pass away. He was a really great person and I miss him, but I understand that he was ready to go.
08/06/2009 at 12:14 am
Lovely piece. Thanks for writing it and sharing it.