From One Caregiver to Another

Berkeley Akers' husband Don was diagnosed with ALS last year.  Here she describes her experience as a caregiver.

I'm a type A personality and ALS is a "Hey, I'm gonna do what I want, when I want and you won't be able to keep up so don't bother" kind of disease. ALS and I have gone round and round on this point, and I'm determined to win!!! (I guess I'm stubborn that way) I've tried to be informed and to be proactive in regards to changes that would physically occur and the apparatuses we would need to accommodate them, as well as home modifications that we would likely face. I felt a little ahead of the curve as Don hadn't been progressing very fast. Then in April his walking became unsteady and he started using a cane, but he hadn't had any falls - until May, when he fell 4 times in 5 days.Suddenly we needed a rollator and we needed it NOW!! It also meant we needed a chair lift so he didn't have to navigate our stairs. 

Then, in July, he took a bad fall at work and we realized a wheelchair was going to be a necessity and a lot sooner than we had been anticipating. In only two months he went from walking with a cane, to a rollator and then needing a wheelchair. That change started a snowball of decisions and I wasn't ready for what was to come. I went from feeling like I was in front of what was happening to having it push me around like a bully on the playground and I didn't like it one little bit. I was a basket case, and I wasn't a cute Longaberger basket, I was that gnarly looking one you see at a second hand store and wonder how it ever made it past any inspection and to a shelf. That was me - I had the shape of a basket but my sides were uneven, my bottom had holes and my handle had pieces of wood sticking out that would poke you if you tried to pick it up. In other words, I looked like me but I felt like a misshapen version of who I used to be and I was angry and brittle. But ALS didn't care. It didn't care that I needed a pause button. I could deal with falls and what that meant, I just couldn't deal with it 'then'.

The thing people don't always understand is that we are never just dealing with the current situation, we are always processing a life full of events that can leave us feeling depleted and as if we have very little margin - and then in stomps some insidious disease that demands your full attention and you can easily find yourself feeling like you don't have what it takes to fight back, and that's an overwhelming an exhausting feeling. My world was suddenly wound up and let loose like a child's toy top as it spins and bounces off of one object and then collides into another and then with a wobbly and unsteady motion it teeters from one side to another before it finally comes to a stop and then just drops to one side with a plunk. That's what every day felt like for almost 3 months. Since we now had to get a wheelchair, we also needed all the things that would help provide an accessible home for Don, and allow us to continue to participate in life by interacting with our friends. This new situation thrust us into a frenzied search for information on wheelchairs, and lifts and ramps and accessible vans, and dealing with the physical changes that were requiring more and more of my help. It was exhausting!!! Topping it all off these searches would be interrupted by a call from a durable medical company needing information and wanting to set up appointments, and phone calls to our insurance company - which was all falling on me because Don's speech was going and he couldn't make phone calls anymore. At the end of the day, I was the one doing all those things and I was mad - at the disease, at people who had normal lives and were celebrating long anniversaries, and the insurance company, and our dog for needing to be put down in the midst of this chaos. Nothing and everything ate at me and I was being rubbed raw.

Life sort of felt like I was putting a puzzle together where somebody had mixed up a mini puzzle with pieces of a children's wooden puzzle, and took away the box lid so I had NO IDEA what the thing was supposed to look like.  It seemed like everything normal was being stripped away faster than I chase falling chocolate and I was reeling. I was trying to problem solve for Don and myself, as well as trying to figure out our home modifications and trying to just "live" each day. These changes can bring up strong emotions that we don't always understand. As it turns out we had to re-arrange our living room several times to accommodate Don's walker and then his wheelchair. I had an IV pole in my kitchen and feeding tube accessories lining my counters and all of this was a constant reminder that this disease really was invading our lives. I was MAD!!! But I knew how stupid that was. I mean if I had to make those changes to make my husband’s home safe and accessible I was happy to do it - or so I thought - until it was really happening. What I realized was this was just one more thing on an ever growing list that was a forced change - and it ticked me off.

The disease was stripping my husband of abilities that no one should ever have to loose and instead of spending time loving on him and being empathetic, I was a whirligig of busyness and I hated it. Things have slowed down a bit but I know that the next series of "this can't all be happening right now" is just around the bend - the issue is - we don't know 'which' bend it's around. So as I come full circle with all of this - it's that not knowing, not being able to plan; having to make major decisions without feeling like you know what the right or fiscally responsible choice is - that is really hard for me and it's easy for me to lose sight of "live today" because I'm so busy planning for tomorrow's need. It's a balancing act and some days you feel you are on a see-saw. You knew you would have days you were up and others  where you'd be down, but what I didn't  expect was for the board to snap in half, sending me careening to the ground and having my half of the board land squarely in my face with a thick thud. It's the unexpected, unplanned and unprepared for issues that send me spinning, I want people to understand that while I'm processing all that, at the same time I'm helping Don get out of bed, or into bed or to the restroom or giving him a shower, and then my phone rings with another  rep wanting to know when she can come by and go over some new devices - and the cycle starts again.

And this is the life of a caregiver for someone with ALS. It’s like stacking marbles.

 I love my husband and I wouldn't want anyone else to care for him, it's just harder than you ever imagine and you don't get to just tend to him - you have to tend to life as well - and there are days you wonder if it will ever end - and then you remember it will - and that just sucks. I know a day will come when all the medical equipment will be gone and I'll be sad to see it go; when the phone won't ring and I'll wish someone would call; when I find myself bored and wish for a distraction. And that's the crux of it for me - learning to appreciate the difficulties and not wish them away, because if I do that, I'm wishing away some pretty precious time with the man I'm absolutely crazy about. 

Sadly, Don passed away in Dec. 2016 after a heroic battle with ALS.