By Louise Ure
I woke this morning with cramps up the length of my left leg, culminating in a white hot vortex of pain at the hip, just where my mother broke her leg a couple of weeks ago. And there was a scaly patch of skin about the size of a cigarette pack on my spine, just above where the bra line would have been if a 93-year old woman wore a bra in a hospital bed and asked to have her back scratched.
"Sympathy pains," I said to Deeply Supportive Spouse.
I've just returned from two and a half weeks at my mother's bedside, trying to remind a woman with dementia about why her hip hurt and calm her when she woke confused and frightened in a strange room.
"Tribute pains," Strong Silent Spouse replied.
I like that better. Tribute Pains, like Tribute Bands playing covers of their idols' hit singles.
So here are some of the hit singles from my Tucson sojourn. Not all are songs that you can sing without crying.
* A sure sign of changing times, it snowed in Tucson. White stuff covered the Catalina Mountains and the saguaros were frost-rimed in the morning air.
* The woman in the next bed had a more aggressive Tourette's-like version of dementia than my mother's. She started with a single sound … sh … sh … then worked it into shirt … skirt … short … shit … ending with the shouted refrain of "My shit. Eat Shit. Shit me!" I learned to duck when the repetition of "eff" worked its way into "fish." "Here's one fish," she'd call as she threw her top denture at me. "Here's a second fish!" was the lower denture. She had a good arm.
* William in Physical Therapy had been an army sergeant in Desert Storm. When asked to re-up, he declined. "They wanted me to treat my troops as numbers – as tasks – not as men. I couldn't do it. I'm doing what I want now." He promised to wear his Stetson, tight jeans and cowboy boots the next day if my mother would try to stand. I'd seen him in those jeans. I encouraged her to make the effort.
* Dementia is a selective thing. Why does her mind refuse to recognize her daughter-in-law but also carve a deeply etched memory of the pain of breaking her leg? She wakes from restive sleep crying, "Don't hurt me!"
* Having a Strong Silent Deeply Supportive Spouse who takes his mother-in-law's soiled bedclothes back to the hotel each night and washes them is a pearl beyond price.
* She clings to her faith in her pain, but at the end, she's a realist. The muttered prayer I overheard as she drifted off to sleep was, "Dear Heavenly Father, if this is my time, take me now." A pause. "But if it's not, then cut this shit out."
* They've rigged up a hookah-like pipe for Rose, a young Asian woman with cerebral palsy, so she can have a puff of cigarette out on the patio without flinging embers all over herself. We high five when we see each other in the hall, but that may be just her regular flailing. I'm not sure that she means to connect with my flat palm at all.
* CNAs (Certified Nursing Assistants) should be paid more. They changed diapers, spoon-fed and put lotion on my mother, all the time crooning "mamacita" or "mi hijita" to calm a frazzled mind. Steff, a raging gay Mexican man in hot pink scrubs, strewed rose petals over a patient's bed when he heard that she was returning from a doctor's visit with bad news.
* A moment in the winter sun on the patio can make it seem as if the world hasn't shifted on its axis and everything might be right once again.
* My brothers deal with the crisis of her injury the same way they face every other obstacle in their lives. Jim adds it to the already formidable list of things to be done. Robert, unable to watch the pain, runs from it, sure that somehow it is a failing on his part not to have made things right.
* My mother will return home today. Not because she's improved to that point, but because the insurance money will run out. A sweet Mexican woman named Socorro will be there to help clean her and feed her and my sister is flying in. We found thirteen gold coins in mom's safety deposit box to pay for the help for a few months.
* There were moments of semi-lucidity that I will treasure forever. As I left her that final night I leaned down to kiss my mother and tell her I loved her.
"I know it's been a tough few weeks for you but I loved our time together."
"Take it with you," she replied. "You can keep it."
I take it with me. It is my Tribute Pain.
LU
Luthis is a beeautiful piece of writing which moved me tremnedously.
my mother is only 82, but this is our future as already she is losing parts of herself.
I focus on enjoying what we have together and my coaching and other skills help us get along fine right now
the emotion is tangible in your writing
thank you for sharing this
CJ
Thank you for sharing this with us, Louise. I admire your courage in dealing with your mother’s dementia. So hard to face the periods when her mind may have stepped out of the room.
Beautiful words, and a beautiful sentiment.
Louise, what a beautiful post.
Empathy and attention to details are two of the things we need to do this job properly. But they do take their toll sometimes, don’t they?
Beautifully done, Louise.
God bless you and your family, Ms. Ure. What a beautiful and heart-breaking post.
My mother, an RN, worked for 20 years on the graveyard shift at a nursing home (they call them healthcare facilities now). ANYONE who works in healthcare but particulary with the elderly or chronically ill deserve a standing ovation. And those on the receiving side of the service deserve respect and great care — they weren’t always in such need. It is hard hard work that is frequently overlooked when they give their hearts every day.
CJ and Zoë, you describe dementia as “losing parts of herself” and “her mind stepping out of the room.” I think you’re both right, but these last few weeks I’ve tried to think of it as a distillation of all the things that are important in her.
Billie and Jake, thank you for the good and positive thought. And PK? CARE GIVER is a title that should be as important as the words “mother” or “president.” The tasks are as daunting.
J.D. I did find myself thinking about empathy and attention to detail on this trip. They are traits valuable not only to the writer but to the caregiver who has to read the pain on an inarticulate face and understand the terror of an unanchored mind.
Louise, I’ve been thinking about you knowing you must be having a very tough time. Truth of it all is, after reading this piece – I had no idea. You have left me with a huge lump in my throat and tears on my face. Sweetie, I am so sorry for what you and your dear mom are going through. Is it O.K. when I finally meet Deeply Supportive Spouse to just burst out with gushes of just how perfect I think he is?and, oh my. I do love this – “She clings to her faith in her pain, but at the end, she’s a realist. The muttered prayer I overheard as she drifted off to sleep was, “Dear Heavenly Father, if this is my time, take me now.” A pause. “But if it’s not, then cut this shit out.”
Louise,My mother declined rapidly before she died; the short term memory loss hit hard for about nine months.
Her times of lucidity were the very definition of “grace.”
Kaye, you may wrap your arms around Deeply Supportive Spouse and kiss him square on the lips. He deserves it.
And Pari, the important thing is that you have not lost the memories. And one cannot truly die until there is no one left who remembers them.
Louise, your grace in sharing this humbles me. Thank you, for all of it. I lost two grandparents to Alzheimer’s, and it’s rather indescribable. But you’ve managed, and brought me to tears in the doing. Hugs and prayers to you, your mom and your family.
Oh, Louise, my heart is with you. My mom’s short-term memory was already starting to go, but an aneurysm/heart attack/stroke last May pushed her into dementia territory. I don’t know how many times I’ve tried to explain to her why she can’t move out of the “hotel” and back into the house.
Hardest thing so far was in September, when she knew she was supposed to go to a funeral on Tuesday at 2, but couldn’t remember at first that the funeral was for Dad. Thank God the memory seemed to click into place and stay with her.
But boy, your mom is right – it sure would be nice if God would cut this shit out.
Oh, Louise. My heart breaks. You were right, they could not be sung without crying.
Thank you, J.T. I decided this last several weeks that there’s not much harder than watching a parent in pain. Maybe watching a child in pain would top it. I don’t want to find out.
And Jena, you’ve got a heartbreaker on your hands. I hope your mother finds a place of peace and tranquility in a corner of her mind and holds tight to it.
Toni, minor keys seem to be my specialty this year. And heartbreaks abound.
My mother lived with us the last 3 years of her life. I remember listening for signs of dementia because her mother had it. My mother’s mind was clear, but she was deeply depressed. At 79, her body was shutting down. I have no idea what you’re going through, Louise. I think watching someone we love fade away is difficult under any circumstance. During my selfish moments, I wished mum had been able to escape to another place. The sadness in her eyes was heart-wrenching.
Louise, what a beautiful post. Thank you so much for sharing it!
My spouse volunteers at a convalescent home down the street from us. Once a month or so, Alex goes down there, guitar in hand, and re-creates the old tunes and lyrics that transport the folks who live there back in time. I’ve seen firsthand those moments of grace that you describe, and also the other kind of moments. Thank you for finding the courage to share both with such clarity.
Oh Joylene, the sadness of a weak body and a still-strong mind!My heart goes out to you.
I don’t think it’s selfish to wish for escape. Sometimes the best place is the next place, or at least I tell myself that today.
Beautiful, Louise. Hang in there….
Tammy, your spouse’s generosity is huge, and I’m sure greatly appreciated. I wish each of us would give of ourselves the same way.
Rae, I’m hanging in … but I’d rather be hanging out (with you).
Ah, Louise, filial devotion thoughtfully expressed. I hope your sister and Socorro find themselves as in tune with your mother.
Thank you, B.G. News from the house this afternoon does not sound good. She may be shutting down.
First of all, Louise, what a beautiful post. As someone who has watched several relatives deal with Alzheimer’s and dementia, you have my deepest empathy. I always chose to believe that it was not nearly as heartbreaking for them as it was for the rest of us — they actually got the opportunity, at times, to relive some of the happiest moments of their lives. Of course the flip side is the opposite sometimes also happened. But with my relatives, it seemed it was the happy memories they relived most often. So even when Granny would confuse me with my mother, or ask who that handsome stranger (Papa, her husband of I don’t even know how many years) was, we could still smile through the tears sometimes. I’ll definitely keep your family in my thoughts and prayers.Also, my mom and an aunt both worked as nurse’s aids in nursing homes — mom only for a few years, but my aunt only recently leaving. I absolutely second the tribute to those who give so much of themselves — often for such little pay.
Your family will be on my mind and in my heart, Louise.
Okay, I started tearing up when you described Steff. Very powerful post, Louise! It reminded me how greatful I am that my sister is living with my 80-year-old mother in South Carolina. They are there for each other, constantly, in so many ways. It is a family “Tribute Debt” that I will never be able to repay, being so far away…
Katherine, your reminder that it’s harder on us than on them is a powerful one. I would happily take the lion’s share of the pain.
Tom, thank you for your strong, positive thoughts.
And Kathryn, do something special for your sister to let her know what peace she’s given you, OK? Oh heck, you’re probably already doing that.
“Dear Heavenly Father, if this is my time, take me now.” A pause. “But if it’s not, then cut this shit out.”
Bless her heart. She’s still in there, fighting back.
You hang in there, Louise, and keep your writer’s eye open, because you’re mining gems from this terrible time.
Lisa, you know some characters are going to come out of that nursing facility experience. But I’m also salting away those special moments with my mom. And don’t you love her prayer?
This was beautiful. Enough said.
For all my ‘Rati friends,
My mother died February 19, two days after I posted this. If it it true that we truly die only when the last person who remembers us is gone, then Jeanne Ure will yet live on for a long, long time.
Rest in peace, little mother.