Thursday, May 5, 2011

Rest In Peace, Mom

Nova Scotia 1950. Get me out of here! Check out that outfit. How does she always look so good without indoor plumbing?
On this Mother’s Day, my first one without my mother, I want to sound an alert in her honor. I want to talk about Progressive Supranuclear Palsy (PSP), the mysterious and cruel illness that tortured and ultimately killed her. PSP is a tragic disease, not only because of its torturous course. It’s also difficult to recognize. Sadly, researchers seem no closer to understanding PSP today than they were when Mom was finally diagnosed in 2007. Its cause remains a mystery.
    PSP is a disease of the brain, attacking six people in 100,000. PSP slowly kills off parts of the brain that relate to vision, swallowing, balance and speech. Because it occurs so infrequently, many physicians simply know nothing about it. That was Mom’s case. At first her vision went bad. She lost her ability to do crossword puzzles due to what she described as fuzzy eyesight. She lost her balance and tumbled frequently, seemingly without reason. She could not eat a meal without dropping half of it on the shelf formed by her amble bosom. Her weight skyrocketed as she became increasingly immobile. She also became incontinent, a fact I was sorrowfully to learn on a car trip from Florida to Nova Scotia. It was in Georgia that I pulled off the Interstate to find a drug store and buy her first package of adult diapers. She wore them for the rest of her life.
New York: Grasslands School of Nursing grad, 1965
    Yet not one of the many doctors who examined her could find a problem with her health. Yes, she had lost her ability to walk without the aid of a walker. And yes, her vision was strangely off. But she passed every colonoscopy and endoscopy and vision test and cognition test and blood test with flying colors.  She went for nights without sleeping. Dozens of medications were prescribed to help her to sleep. None worked. She became a habitual television watcher, a past-time that she’d long considered to be a big waste of time. She dressed in house dresses and stayed indoors to avoid the embarrassment of falling in public.
Mom and Dad. Forever young. (South Salem, N.Y.)
    As her health continued to fail, with no reason that any medical test or procedure could find, she considered that she was simply wearing out, that she’d burned the candle at both ends for many long years and this was the result of all of that. She’d been a nurse and worked the night shift for 35 years. She worked while her husband and three kids slept because she liked to party by day. She skied in the winter. She beached in the summer.
    As her habits began obviously to change, we scolded her for eating too fast, for not taking care of herself, for not exercising. Walk, Mom! Get out and do things, we urged. She said she couldn’t. We thought she was lazy, or depressed. We agonized when the phone rang, expecting the bad news from Sebring, Fla. of another mishap involving Mom, who was supposedly quite healthy.
    Claiming that her lovely home had become too big for her to handle, she sold it and bought a tiny trailer in a seniors-only trailer park. She had the floors redone. The walls painted. She bought new kitchen appliances. But it was still a trailer, and we were mystified as to why she chose such a modest dwelling when she could afford so much more.  Then I understood. I observed that when she walked from the living room to her bedroom she used the walls to keep her balance. Everywhere in that trailer she had a place to hold on to, to keep her on her feet.
    What was wrong with her? I took her to eye doctors, five total, and not one could find a problem with her eyes. By then she was incapable of reading or writing. In the hospital, after a fall, a nurse asked me “is your mother blind?” We were advised to place her in a nursing home, but she countered that she was healthy. Every test said so. Why would she give up her independence when there was nothing wrong with her? If she fell and broke her neck, so be it. 
    We hired people to come into her home and clean, cook and take care of her dog. Her condition continued to baffle us, and her. Four uneasy years passed.
Who needs sleep? Mom worked by night. Partied by day.
    One day my husband Michael said “I think I know what’s wrong with your mother.”  He’d read an obituary of a woman who’d died after a courageous struggle with Progressive Supranuclear Palsy. He’d researched the subject and was soon certain that Mom was a victim of PSP.  He was right. She was.
    The description of PSP matched Mom’s symptoms exactly. We got Mom to a neurologist who confirmed our suspicions. (The first neurologist she saw insisted she had Alzheimer's Disease, a diagnosis that in no way matched her symptoms.) The prognosis was ugly and sad. Mom’s main risk factors were falling and choking. PSP patients often died of pneumonia from inhaling food, he said. He also told us that there was nothing to be done. She would die. Slowly.
A favorite photo. Mom, Rocky, me.
    That was in June, 2007. She died in a nursing home in August, 2010, completely blind, wheelchair bound, and eating a diet of pureed food—the most horrible insult of all, she said. She broke a hip. Then she got pneumonia. She survived all of that and four months later broke her other hip. She died in her sleep, days later, hours after being released from the hospital.
    She had a nice nest egg by the time she retired at age 62. She’d carefully saved her money, and even inherited a bit from her own mother, but she died nearly penniless, having spent a fortune on her care during the last five years of her life. Running out of money was a constant fear. And the fear of dying by choking to death was always with her, too, she told me.
    I’m telling this story to inform as many people as we possibly can of the disease of PSP. We were surprised and heartbroken at how many medical professionals failed to recognize Mom’s illness. Ultimately it was my husband who diagnosed her, and he is a songwriter.
   We donated our mom’s brain to the Florida Brain Bank and learned from her autopsy that her disease was definitely PSP with no other disease process. A neurologist in Key West told me that Mom’s was only the fourth case of PSP in his career. He said PSP had probably shortened her life by ten years. She was around 70 when she began her decline. She was 77 when she died.
    Others who have died of PSP are Dudley Moore, the actor, and Teresa Brewer, a singer, who died at the same age as Mom. Doubtless there are hundreds of people suffering right now with this strange and hellish illness that goes unrecognized more often than not. Once we knew what Mom was suffering from we hooked up with the PSP forum, where the various features of PSP are discussed online daily. It gave us immeasurable relief.
    I’m telling this story with the hope that it will help someone, somehow, or some way, to recognize or to manage this particularly horrendous illness that my amazing mother handled with remarkable humor, grace and courage. 
    Happy Mother’s Day, Mom. Rest in well-deserved peace.

Here's a song Michael wrote with his Nashville friends Dave and Matt Lindsey.


  1. I love this story. Thank you so much for sharing. My mother died at the age of 33. she had so many unexplained illnesses; one of which I believe was bipolar disorder. She loved life; but, struggled with it. RIP Beverly.

  2. June,
    I read your post on the PSP Forum and had to follow the link. My wife suffers the condition, diagnosed a little over a year ago with symptoms first noticed as vision problems and a dimenished ability to concentrate starting about four years ago. Fortunately, I was able to retire a little early and we were able to move closer to her family so her sister can help withher care in the future.

    I am so sorry you also had to deal with this killer. I've always been a strong person, but now I'm very afraid of failing her.

    Thanks for writing this piece.


  3. Hello Forrest: I am so sorry that this disease has found your wife. Don't be afraid of failing her. You won't. Her own body will fail her and you will be a friend and comfort. The PSP forum has been invaluable to me. Since Mom died I haven't been on, but during her disease process I was there frequently and it was like sitting in a big circle of loving people, all ready to give of their wisdom, strength and hope. Ask any question you have on the forum. You will get many answers. If I had to do this again I would make sure of my options. For example, people who are legally blind are able to get Social Security disability. You didn't say how old your wife is.

    Stay close to the forum is my advice. And take care of yourself, honor your strength and devotion. Honor what you are and what you do -- and try not to dwell on whether or not you are good enough. You will be good enough. And don't be afraid to ask for help. You won't fail her.


  4. I, like Forest, followed the link from the so very helpful forum to read your story. My husband has this horrible disease, and has just enough apathy to prevent him from really comprehending the toll it takes. You've given Forest some wonderful advice and I'll take it to heart, too. May your dear mother rest in peace.

  5. My father has this condition but like your mom's it went unrecognised for a long time. We like you thought he was getting lazy and depressed and after intense check ups this was confirmed by the medics they told us to give him tough love so we nagged him to do things. I felt so horribly guilty when we finally learnt the truth. All wecan do now is love hme and care for him.

  6. My husband and I feel awful when we remember the times we talked to Mom begging her to go for a walk, exercise, pep up! She was a very energetic person and then all of that energy was gone by this mysterious illness. It is an enormous challenge for the person with PSP and for those who love them. It was a terrible and very sad time of our lives, and awful for my formerly fit-as-a-fiddle mother. I'm relieved it's over. I have deep compassion for those going through this nightmare. My advice, if there is anything at all to offer, is to take it one day at a time. Love him and enjoy the part of him that is still here. Now, over 3 years since my mother's death, we only remember the good things about her. We don't think about her final days. We think about all the days she lived in the full force of her complex personality. She lived an exciting and, in many ways, enviable life! She left us with a lot of love and many wonderful memories. I am so sorry to hear of your situation. One day at a time . . .