On The Outside Looking In

“Yesterday is gone. Tomorrow has not yet come. We have only today. Let us begin.” -Mother Teresa

A perspective of PSP and the heartbreak of the family by Ryan.

Jenny’s parents were young when they brought her into the world, and the short gap between their ages helped to form a bond that might not necessarily have been there if a more profound age difference existed. Jenny always said she was thankful to have such young parents because growing up they were very active and did things that not all the other kids’ parents were doing. For example, Jenny often talks about her mother and how she would pull over to the side of the road as they were driving when coming across a patch of wildflowers. Together with her mother, she would examine the find, and her mother would encourage her to identify them. That’s how Jenny now knows the names of most of the flowers in Vermont.

Jenny also remembers with fondness how as a child she would never leave the house in the summer without her swimsuit. Her mother would insist on a change of clothes being kept in the car just in case in their travels they uncovered a beautiful swimming hole. The randomness of her parents’ ways and their attentiveness and participation in her daily activities is something she attributes to her parent’s age. “They were always involved with me and my siblings,” she says. The look in her eyes as she glances back into the past and once again relives those long-ago moments is indicative of the love she has for them. Jenny considered herself lucky because most kids do not get the opportunity to grow up and have parents who still have their entire lives in front of them, too. The chance to spend so much time with them, and to enjoy all of life with them, is something she holds near and dear. However, when her mother was diagnosed with a rare and fatal brain disease, everything changed.

Progressive Supranuclear Palsy (PSP) is a rare and fatal brain disorder. Jenny says all the time how a diagnosis of PSP is “like winning the lottery.” This disease, however, is not the lottery anyone wants to win. The comparison of the lottery stems from the rarity of the disease.  She fights back the tears and shakes her head. Suddenly, a slight smile forms on her lips and she sighs and laughs in a way that suggests this is simply her family’s typical bad luck. “Leave it to someone in my family to get a rare brain disease,” she says. She takes the news about as well as anyone can. Jenny was slow at first to process what the diagnosis meant. Back then the “scary stuff” was still somewhere down the road, and it was tomorrow’s problem and could be dealt with in the future.

Time is unforgiving, and reality began to set in with her mother’s loss of mobility. The progressiveness of the disease started to show its ugly self. Simple tasks, such as walking, became more of a struggle and eventually impossible. Jenny now has to assist her mother in and out of a wheelchair to get her to the bathroom or anywhere else around the house. Conversations that once filled the silence of the house are not as familiar anymore due to the loss of her mother’s speech. The words are slurred and at best difficult to understand. “She’s trapped in her own body” is how Jenny explains it. That is what PSP does to someone. The mental faculties are still fully in place, but the disease takes away the victim’s ability to move his or her own body. Jenny often talks to her mother without expecting a response. “I’d give anything to hear my mom’s voice again,” she says. “Not the way it is now, but the way it used to be, you know?” She regrets not ever having recorded her mother’s voice for prosperity. She only wants to talk to her. She understands her mother is there inside, even if on the outside it appears she is not. Jenny will sit in a chair next to her mother and knit while talking about the events of the week and fill the silence with her own words. The time they spend together is cherished.

Time is of the essence. Jenny acknowledges that there are so many things she would like to do differently if she could go back and do things all over again. She would record her mother’s voice. She would talk to her mother and ask her questions and seek advice. Jenny says she is guilty of thinking there would always be a tomorrow. For all of her life, Jenny has been comforted by her mother, and now she is losing her. “This is so unfair,” she says. Jenny spends the remaining time she has with her mother trying to give her comfort and searching for ways to fill the emptiness she feels by this devastating loss.  You never know what kind of obstacles life will throw at you, and Jenny will be the first to tell you to “enjoy every minute you have and don’t ever take anything or anyone for granted.”

Letting Go

 “Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” – Lao Tzu

Today, I want to write about what PSP has given our family.

After my mom’s diagnosis with PSP my sister, father, and I became her primary caregivers. With us and help from a local agency, we followed Mom’s advanced directive and DNR to a T. Even to the point that my sister (Kate) and I advocated for and fought for her right to pursue physician-assisted suicide. As mom has progressed, she has become trapped in her body. She has lost the ability to talk freely, to eat foods she wants, to walk, to move on her own, to see…the list goes on and on. My mom and those that love her have been grieving all of these losses as they come for years. PSP is horrible beyond imagination. But, PSP has also given our family the knowledge of what is truly important.

One weekend we believed that Mom was going to die. Not a drill, not an adverse reaction to medicines, or choking on something and being revived, or even aspiration pneumonia. Rather, the END in all capitals. On Saturday, we were given two options. Option one: Send mom from the nursing home to the hospital for iv antibiotic treatment and life-saving interventions. Option two: Allow Mom to take off her non-rebreather and allow her to die. Mom had always been very clear with her wishes, and she had prepared an advanced directive. The advanced directive and Mom’s wishes were no hospitalization and no antibiotics. But, despite the lack of speech and losses of physical abilities Mom’s mind has remained intact. So, we wanted to double check what she want. Thus, I found myself being the one to ask.

On Saturday, I sat on her bed with her and held her hand in mine. I explained her options to her. Then I said “Ok Mom, squeeze my hand if you want to go to the hospital.” She did not squeeze. Then I said “Ok Mom, squeeze my hand if you want to stay here.” She did not squeeze. So to check that she was with me and understanding I said “ok Mom squeeze my hand if PSP still sucks.” She squeezed. A while later she was able to indicate that she did not want to go the hospital. So, my Dad, Kate, and I called everyone else. My sister from New York City arrived late Saturday night. We all agreed on Sunday morning if Mom wanted to remove her oxygen then that was what we would do.

Throughout the night Saturday, Mom had an uncontrolled fever, and she kept trying to remove the oxygen. When I arrived early Sunday morning, she continued to try to remove the Oxygen. My Dad said, “hang on Debbie, wait for everyone else.” He looked at me and said, “I promised her when this time came we would not drag it out.” So, I called my sisters and said get our brother and come now she is taking off the oxygen. I let Mom’s siblings know where we were at and I prepared myself to be present.

I sat with Mom after she removed the non-rebreather. Unlike my sisters, I had not yet been able to tell Mom what she meant to me. It was just too big, too hard, too sad. But on Sunday morning as I sat with her- just me and her and Dad and as she struggled to breath I couldn’t help the tears from falling anyway so I said to her, “Mom this sucks, and I love you.” And as I cried, she reached her hand up and brushed away my tears, and she pulled me into her and held me as I sobbed and I said everything I could possibly say. “Thank you for being my Mommy.” Ever the mom- as she lay dying she comforted me. By the end of the day, Mom was still with us. As I write this, Mom is still with us.

But, I learned something entirely critical this past weekend. I learned more about love that I thought was even possible. In all of the reflecting, I have done I have concluded that the most significant gift my Mom and Dad have ever given me has been the power to love completely, unconditionally, and without abandon.  To my siblings, Dad, and I, Mom is our entire world. We don’t want to lose her at 58, and honestly, if she were 108, we would still not want to lose her. But, love is sitting with someone and respecting whatever wish they have even when every part of your body wants to call 911 and get an ambulance. True love, is letting someone go however it is they want to go.

During this journey with PSP, love has manifested itself in a million ways. Love was a road trip Kate and Mom took to NYC as one of Mom’s bucket list items. Love was a son lying in bed with his Mom and listening to music. Love was helping Mom shower, hand feeding her when she can’t do it herself, suctioning her mouth when it is full of junk, washing her hair, holding her hand, and making really dumb jokes cause they make her smile. It is all love, showing up and being present. But, the greatest act of love that I have ever seen was Sunday morning when Kate, Emily, Luke, Dad, and I watched Mom take off her oxygen with the belief that her doing so would result in her death. This journey is not yet over. Who knows what horrific event will come our way next, but, what I do know is that like every other challenge we all will meet it with the unconditional love that Mom instilled in each and every one of us.