This is by far the hardest post I have ever written. I have typed and deleted. Typed and deleted. Tonight, I sit at my keyboard again, still at a loss for words.
As many of you know, my blogs have been sporadic this past year because a terrible tragedy has befallen my family. A health crisis.
In August of 2014, my sister-in-law, Victoria Kruse, was diagnosed with ALS (amyotrophic lateral sclerosis). We received the diagnosis when the Ice Bucket Challenge was in full swing. I say “we” because when a beloved family member is diagnosed with a horrific illness for which there is no cure, it is an event that affects us all. It is our diagnosis. And as I said in my September 25, 2015 post, an ALS diagnosis is like having a bucket of cold ice dumped on you.
Fast forward to February 2015, five short months postdiagnosis. I relocated to Arlington, Texas, to assist in Vicki’s care. In the five months that I lived nearby my brother and his family, Vicki regressed from walking on her own to walking with the aid of a walker to, by early summer 2015, using a motorized wheelchair.
By summer of 2015, it was time for me to return to Chicago and resume running my court reporting agency, a task that had been handled by my trusted staff for five months in my absence.
But while I was in Texas, my time was well spent because I was fortunate enough to help identify an amazing caregiver for Vicki, a woman named Tammy who is there for Vicki throughout the day to assist in all her activities of daily living — the simple tasks that you and I take for granted — so that my brother is able to continue working in order to keep their household economic engine humming.
Over time, my brother, along with his amazing church family at Southfield Christian Fellowship, were able to find more caregivers to handle night duty, along with rotating shifts of drivers to take Vicki out for evening rides in her modified Braun van, capable of accommodating her wheelchair.
My sporadic trips back to Texas have been heartbreaking. The time between visits has made the deterioration even more apparent, more striking. In my absence, ALS has continued to ravage my sister-in-law’s body. Vic can no longer speak. In fact, she lost her speech months ago. She cannot hold her head up. And she is rapidly losing muscle function in the very last part of her body — her left hand, which she uses for tapping out letters to make words on her spelling chart so she can communicate with us. Her world is closing in like quicksand. And the worst cruelty of her disease is that she’s fully aware. Of everything. Of her losses. Of the fear in our eyes.
As this cruel disease takes its toll on my sister-in-law, it is simultaneously taking its toll on their family finances.
What I have learned about insurance, about Social Security Disability, about financial options available to families in the midst of a medical crisis has been an eye-opener, to say the least. I’ll be discussing that in future blogs, because this thing I’m about to do — this thing that you’re about to help me do — is not just about ALS. It’s not just about MY family. It is also about starting a dialogue at your family’s dinner table so that you ask the question, “Are we covered in the event of a catastrophic medical crisis?”
But for now, this post is about Vicki’s struggles.
The real costs of caregiving for ALS:
- The caregivers that lovingly care for my sister-in-law while my brother works, or occasionally sleeps, are out-of-pocket expenses, not reimbursable by insurance. Each week, my brother pays nearly $1800 for caregivers. That excludes massages four days a week to help relieve Vic’s rigid muscles. That’s just for caregivers.
- The latest round of expenses my brother faces include making their house handicapped accessible — knocking an extra hole in the bathroom wall to assist in — well, you know, toilet activities — as well as removing all the carpeting from the home and replacing it with tile to accommodate Vicki’s wheelchair, modifications that don’t come cheap.
- Most recently, my brother realized he’d have to add a backup generator to keep the much-needed electrical power going in case of an outage during one of those nasty Texas storms. It’s not like they can run off to a hotel when a twister (like the ones as recently as December 26 that left me stranded at the airport for three days) ravages a nearby neighborhood.
- And then there’s the dedicated cooling/heating system for the bedroom Vic occupies to keep her comfortable.
A Hoyer lift. A Medift Chair. Custom neck brace. The list goes on.
It’s been painful to witness my sister-in-law’s deterioration. Very painful. And that pain is only compounded by watching my brother and sister-in-law’s savings rapidly erode because there is no end in sight to the cost of care and, sadly, as I will discuss in future posts, there is no financial assistance available until all of their personal resources have been exhausted, extinguished, depleted. Gone.
I’ve been wracking my brain trying to come up with ways to help. And then the light bulb went on. I have this thing that I love, that Vic loves — we share, among many things, our love for my Jeep. She (the Jeep) is affectionately referred to as “Mango Tango,” a reference to her gorgeous color.
I remember showing up for that last family vacation in June 2014 (pictured in the photo gallery below) in Mango Tango. Vic’s eyes lit up. She had to take ‘er for a spin. She so loved the Jeep, at the end of the family vacation she told Ron she wanted to trade in her Toyota Camry for A JEEP!
Sadly, it doesn’t look like that will ever happen.
Then this idea came to me: I can give Mango Tango to Vic in a totally different way! So I am Raffling Off Something I Love For Someone I Love!
So here’s how it works. This weekend I’ll be building a website loaded with pictures of Vicki’s Jeep. Next week, raffle tickets will be printed and thereafter available at $100 each. I have to sell 500 tickets by Valentine’s Day 2016. What better day to pull the winning ticket than the day that is devoted to love! (The money will be held at PNC Bank in a special account until the raffle is complete.)
Together, you and I are going to raise $50,000. Together, we’re going to do something really big for someone many of you know and love, for someone that, if you don’t know her and you met her, you’d love her, too.
UPDATE: To purchase a raffle ticket, go to http://margie2468.wix.com/jeepraffle