Wednesday, January 28, 2015

Freezin' for a Reason

This is one of my favorite photos of my dad (and my cutie pie nephew, Sal). 


The power wheelchair he is sitting in allowed him the freedom to move around the house and get outside when ALS robbed him of his ability to walk. Prior to using this chair, he used a cane, then a walker, and then a push chair. While he still had some use of his legs, a lift chair awaited him in the living room to help lower him to a sitting position and then raise him to greet his walker.

There is a window to the left of my dad that didn’t make it into the photo. The window looks out onto the deck in the backyard from what used to be my parents’ garage. They converted it to a wheelchair accessible bedroom and bathroom when my dad’s power chair prevented him from navigating the hallway and doorways of their home. It was a huge, expensive undertaking that took months and many hands to complete; but it afforded my dad an element of privacy and personal space that he would not have otherwise had.

His bedroom and bathroom were equipped to help keep him as comfortable as possible while somewhat simplifying the many tasks of caring for him. (Heavy emphasis on the word somewhat in that last sentence, as it is never simple to care for someone with ALS. Ever.) My dad slept in a medical bed when he could no longer reposition himself or transfer out of bed independently. A Hoyer lift was attached to a track on the ceiling directly above his bed. My mom used the lift to transfer my dad from his bed to his power chair (and vice versa), and from his bed to a shower chair to prep him for the day. A bi-pap machine sat on a cart nearby and helped my Dad breathe at night.

A portable ramp allowed my dad to wheel out of the house and onto the backyard deck or off the front porch for an occasional outing in a wheelchair accessible van.

Once a month, my mom attended a meeting for ALS caregivers, where she had access to a fantastic hospice nurse and social worker who could answer questions, provide guidance, and allow a safe venue for venting frustrations. It also allowed her to connect with other families who truly empathized with and related to the devastation of ALS, shared ideas and best practices, and offered advice. 

This is hardly an all-inclusive list of the equipment and devices my dad relied on, but some of the mentioned items (and the meetings my mom attended) were provided by the Joan Dancy & PALS Foundation. When my dad died, those items were gingerly removed from his home and offered to other local PALS who needed them.

It still kills me to think that a man in his mid-50s – a man who was otherwise healthy and lived an active life – required this level of care; but I am forever grateful for the incredible kindness and support Joan Dancy & PALS showed him. The array of medical devices, assistive technology needed to provide someone with ALS some amount of comfort, dignity, and independence is staggering, and if not for Joan Dancy & PALS, so much of it would be out of reach for so many local families. They are a solid, worthy organization that makes a profound impact on many lives in the throes of a nightmare. If stripping down to a bathing suit and jumping into the ocean the middle of February drives funds into their loving hands, then I will gladly do it until there is no longer a need (and may that day be soon).
Freezin' for a reason with my husband and (brave, wonderful) friends
If you can donate a dollar or two (or more!) to help my teammates and me reach our fundraising goal for this fantastic organization, know how very thankful I am. Every bit of your donation will be used to provide assistive equipment and technology, financial grants, and emotional support to local families who are fighting this brutal disease. And if you would like to join our team (The American League Swimmers – named for my Dad’s great love of the Yankees), the more the merrier. I promise… you won’t believe how fun and fulfilling it can be to be so incredibly cold!