November is National Family Caregivers Month, and today’s blog post is the fourth in a recurring series from our friend Scott Liniger, who was an ALS patient caregiver for his partner Tammy Hardy for six years. In his series “Dispatches From a Former Caregiver” Scott hopes to explore the parts of his and Tammy’s story that tend to the, shall we say, more irreverent side of their journey.
Today Scott brings his and Tammy’s story back from Europe to the United States. Back in the U.S. they face challenges with medical devices, accessible seating, and unfamiliar bathroom tile. Lastly, they reach the end of their journey with ALS.
By Scott Liniger
If you’ve managed to get through the travel travails of our experiences in Venice, France, and Switzerland, thank you. I’d love to continue with more crazy anecdotes of people who you’d think would know better, but in fact do not. However, as was inevitable, as ALS slowly worked its dark magic on Tam’s body, our traveling took a bit of a hit. It just became more challenging, particularly in new, unfamiliar environments. When you’re sure of your footing and space in your place, it makes it easier to move around and do the things you need to do. When it’s a different environment, there’s no telling what issues may crop up.
Not long after we returned from Europe, we went house hunting in Charlotte, North Carolina. On the plus side, we knew we wanted an open floor plan (we knew a scooter and/or power chair was in our future), as well as easy access to get into the house. We also needed the master bedroom on the first floor if it were a two-story house. We used the same routine as we had in Venice, with Tam’s sister, Keri, in the role Chris played in Venice. I’d carry Tam up the steps, Keri would carry the walker, and on with the house viewing we went. I also learned that, for teeny tiny airplanes, there is a little seat on rollers that just fits in the aisle of the smaller aircraft. This is how they move folks who need the assistance in and out. I have to say, as someone who had never been inside a medical device store before Tam was diagnosed, I was (and still am!) truly amazed at the range of products and devices available to help people live their lives. Of course, there are other things that you would expect to be available that, for whatever reason, just aren’t. Tammy enjoyed her beverages, from coffee and water to wine and more wine. However, when she was situated and working on her PC or watching television, she didn’t want the cup in the way. By this time her arms were pretty much non-functioning, so it required a bit of effort to hold the drink in place, then take it away, then put it back in place, etc. To get around this, we created a “boom drink holder.” There are plenty of drink holder options in the aforementioned medical device stores, as well as on Amazon, but there weren’t any that allowed for the cup to be “swung” into place, then swung away. With the universal fix-all duct tape, we attached a cup holder to a mic stand (who says musicians are good for nothing?!) that easily swung in and out of place, and maintained the correct cup height/angle.
Along with learning about the wide, wide, world of medical device stores, I also became a sort of aficionado regarding accessible seating. Sure, the point is to make sporting events, concerts, etc., open to all, and I am 100 percent in support of that. If it means the companion gets to enjoy the perks, hey, one must do what one must do. It just so happened that the band R.E.M. were playing a concert a couple of hours away from Charlotte, in the Atlanta suburbs. The venue was a typical hockey/basketball/concert arena, along the lines of Chaifetz Arena. I ordered the tickets, not really knowing where we’d be located. Turns out, for this venue, we were located in the front row. Pretty awesome. And to get to the area, we were ushered around to an elevator that was also used by the band. We ended up sharing a ride with the touring keyboardist. As a dear friend used to say, sometimes it’s the little things…. Of course I then assumed that all accessible seating in every arena was the same. So when we got our tickets to see U2 at the United Center in Chicago, I couldn’t wait to get my hands on Bono. Turns out, that was not the correct assumption. At the United Center, the accessible seating was a couple of levels up, far away from the floor. I was incredibly upset and disappointed. Well, I mean, Tammy was clearly upset and disappointed. Okay, she really didn’t care at all. What did prove to be a bit silly was there were people in front of us, people who were standing. I am all for standing (and singing) at a rock concert. That’s part of the experience, and part of the point. However, in this particular situation, well, it didn’t seem quite right. The most exciting part of the evening, however, occurred before we got to the concert. We had driven to Chicago and arrived at our hotel. As Tammy was steering her power chair into the elevator, the doors closed, with enough force to pop one of her tires. We were not expecting that, and I was worried we’d miss the concert. I mean, I couldn’t just go with or without her, right? I honestly don’t recall how we got the chair fixed, but somehow it was, and we managed to make our way there.
After the short stint in Charlotte, we had the opportunity to move back to the St. Louis area, where we would have family help and support. We knew, sort of, anyway, what we were facing, and we couldn’t pass up the opportunity to get back to our family and friends’ support. Unfortunately, as the disease wore on, it impacted our ability to travel. The reality is, with all the challenges ALS presents, it’s just easier (and safer, and probably smarter) to be in familiar surrounds. Knowing where everything is, knowing how everything works, having all the medical devices handy and convenient, just makes things go more smoothly. No matter how prepared we thought we were, some things just happened that were beyond our control. As the disease impacted Tammy more and more, it became more challenging, and dangerous.
While Tam’s bulbar function remained mostly intact for the majority of her ALS battle, she did need to use an assisted breathing device. At her grandfather’s funeral, which was just 30 minutes from our house, we discovered her battery for the breathing device was about to die, and we didn’t have a spare with us. I would swear we had the battery charged, and certainly didn’t expect that kind of drama. We gathered our stuff and made a beeline for home, fortunate to get home in time to get the unit plugged in. On another occasion, friends loaned us use of their condo at the Lake of the Ozarks. The unit did have some accessible features, but it wasn’t the same as being at home. If there was one advantage we had, it was our relative sizes. Tammy was five feet, two inches tall, and 110 pounds. I’m six feet, two inches tall, and, let’s just say, a bit larger than Tammy. And while I probably should’ve taken a patient lifting class, I opted instead for the brute force method (which I’ve talked about before). For the most part, this served us well. And even in a situation where Tam was struggling, I could always grunt my way to get her up and situated. On this occasion, however, we slipped and fell in the condo’s bathroom. Different floor tile, more slippery than we were used to, and down we went. Even with the brute strength approach, it’s incredibly difficult to pick up someone off the floor, particularly when that person is not able to assist physically. We struggled for a bit, and we finally managed to get ourselves up in increments. And no, Tam was not hurt in the process. Of course the best part of this story is what happened later after we got ourselves dressed and headed to meet our friends for dinner at a restaurant. You see, from time to time, I may or may not have done little silly things, like hanging Tam’s unmentionables from her power chair. I also from time to time may or may not have forgotten that I did little silly things like that. That night we rolled up to the table and were met with bursts of loud laughter from our friends. There, hanging off the back of the power chair, was a pair of Tam’s underwear.
There were a few other adventures as we went along. We battled as best we could, but also were cognizant of the potential issues we might run into. It was always a balance of doing what we could while not taking crazy chances. And finally, on November 25, 2008, after fighting ALS for six years, Tammy Hardy, passed away. She was 39.