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The One Thing That Sustained Me Through My Mother's Terminal Illness

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It was warm. The breeze was no longer the cold breeze of late winter and early spring, and the view was made more beautiful with the presence of the mountains cloaked in their summer green. Standing on the hill, looking out over the Green Mountains, I was aware that I had found the perfect spot. Quiet, serene, somewhat removed from the other inhabitants, and incredibly peaceful. I felt a bit like a crazed person admiring the view, and making sure the location I chose was perfect — after all, when my mom ended up there, she wouldn’t really know if the view was that good. But, it was important to her to have a gravesite which was peaceful and had a view. So, I found her exactly what she wanted.

That is the thing about having a mom with a terminal illness — you get to do all kinds of things you never thought you would do, and in doing so, find yourself acquiring memories you wish you never had to acquire. When that terminal illness happens to your mom while she is in her 50s, it’s incredibly cruel, and those memories just seem to pile up. But with all of the bad, horrible, heart-wrenching memories, there are also the acts of love that sustain me, that help me to hold on, reminding me a life worth living is one with love.

For us, it all began with the falls. In the months leading up to my mom’s diagnosis, she started to fall. Seemingly, for no reason, one minute she would be standing and the next she would be on the ground. The falls were scary, but the list of potential diagnoses was scarier.

Unfortunately, progressive supranuclear palsy (PSP) is a rule-out diagnosis. Once every other disease has been ruled out, the only one which remains is PSP. After months of neurology appointments, testing, and the development of vision problems, Mom was officially diagnosed with PSP. The phone call came in one evening in the late fall. I remember picking up the phone, hearing it was PSP, and hanging up. The next thing I remember is sinking to the floor and feeling like I had gotten punched in the gut.

The problem with PSP is that it does not stop at the falls. Instead, PSP symptoms include problems with balance, loss of vision, loss of mobility, and extreme difficulty swallowing, with the eventual loss of speech. The thing with PSP is that the patient eventually becomes trapped in their own body while remaining frighteningly cognitively aware. Watching and helping my mom while she was dying from this illness has been the single hardest thing I have ever had to do, and it has given me gifts for which I will be forever grateful.

Caring for someone is one great act of love. From helping Mom to get dressed, to preparing thickened coffee with the exact amount of cream she likes — it is all an act of love. In the journey my entire family has taken with PSP, the most important thing I have learned is the power of love. Love manifests itself in a million ways. Love is the road trip my sister took with Mom to New York City to fulfill one of her bucket list items (seeing the city). Love is my brother lying in bed with Mom and listening to music. Love is picking out Mom’s gravesite to her exact specifications. Love is how we not only care for Mom, but how we care for each other. Love is a Facebook message from my sister reminding me not to feel guilty that I can’t make it to see Mom because I am sick. Love is bringing my Dad a coffee at 3:45 a.m. after he spent all night next to Mom’s bed.

Love does not take away the pain of anticipatory grief, nor does it always take away the pain I feel in watching my Mom become someone far removed from the woman she once was.

But love has helped to heal the cracks, has offered me hope, and it has sustained me when I felt nothing else could.

Follow this journey on Between Nowhere and Nothing

Originally published: April 18, 2018
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