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!
