THE BLOG
10/07/2013 09:04 am ET Updated Jan 23, 2014

Who Cares About ALS?

I am unlucky that I was diagnosed with Amyotrophic Lateral Sclerosis (ALS) eight years ago. I am lucky that my ALS progression and loss of motor skills has been very slow. Today, I can stand and walk with assistance. I don't need a feeding tube and can breathe on my own, but I have increasingly needed round-the-clock care.

Overall, I like to think I am pretty self-reliant (at least when I'm using my beloved iPad), but I need to be fed, bathed, dressed and transferred from my wheelchair to a chair or wherever I need to go. My speech is slurred but I can communicate. My partner, Mark, has a busy job and works full-time, so we truly have come to rely on caregivers.

Currently, we have two outstanding caregivers, but that hasn't always been the case. We moved into our house just outside of Boston more than four years ago and during that time we have had more than 10 different caregivers who have walked through our door, most lasting just a few months before a fatal flaw is discovered.

So here's a few "caregiver cautionary tales" and tips that will hopefully be helpful to anyone who's reliant on another person for their well-being.

• Make Sure Your Caregiver is Emotionally Stable: Taking the important steps of background checks, references and in-person interviews are vital, but sometimes a person's true personality can come to light long after you've hired them. I had this experience when one caregiver began exhibiting signs of irrational anger at world events and social injustices (way beyond my control) after he had been working with us for almost a year. It was almost entertaining at first, but then it just became scary. The reasons for this were unfortunate and not really this person's fault but, still, I did not feel safe and that's when we decided it was time to make a change.

• A Caregiver's Ability to Communicate is Key: We have had several caregivers who have come from all over the world. For some, English was not their first language. This language and cultural barrier, along with my slurred speech, made day-to-day communication challenging. A simple request like, "Please take me to the bedroom" was followed by a response like, "You said you want a chicken salad sandwich?" Or I'd ask, "Please buy me some grated Parmesan cheese, you know in the green Kraft bottle." Blank stare, followed by, "Parmesan?... Kraft?" Forget it. A person with speech problems just learns to do without. On the flip side, I have had caregivers who could speak perfect English but literally chose to stop talking to me at a certain point during our relationship. I think it was because they found it too challenging and got tired of trying. In those cases, I literally felt like a piece of furniture.

• A Caregiver Needs to Be Responsible and Someone You Can Trust: A few years ago, Mark had to go out of town on business and my caregiver at the time was a young man who came to us from an agency. During his first -- and last -- "night over," he decided it would be OK to smoke a cigarette in our house (as if we wouldn't notice), smoke pot on the front lawn, and finally pull the cable TV box out from our family room and move it into the guest bedroom where he was staying. When we asked him about this he said he didn't like not having HD cable in the bedroom, so he decided to make a change! The cable hookup in the family room hasn't been the same since.

Along with this episode, I have had caregivers run errands for me and leave me alone for hours, show up late for work (or not at all) and conveniently ignore my calls for help. My biggest fear is to be left alone for an extended time with no way to move or communicate with the outside world, so we put a lot of trust in a caregiver to keep me safe. Bottom line, they need a good head on their shoulders and to take the job seriously if it's going to work out in the long run.

• An Understanding of Boundaries: Then there are those who chose to get "in my face" at times when I just wanted to be left alone. No understanding of personal boundaries. This includes during my "private time" in the bathroom. There is nothing like trying to "take care of business" while your caregiver is walking in to share his thoughts on last night's American Idol results. Thank you very much for your insights, but can this wait? Even better, I've had caregivers who have thought nothing about bringing their laundry or their pets to my house. In short, I found, even with family members who are visiting and trying to help, the establishment of personal space is important in order to help keep some form of independence.

• Having the Desire to Give Care: Recently Mark and I were watching the heartbreaking but wonderful film Amour. It's a movie about a couple facing the challenges of old age, sickness and caregiving. As the husband watches a caregiver harshly bathe his disabled wife, you can see the pain in his eyes and the helplessness he and his wife share in that moment. The caregiver depicted in the film did not care about her client and treated her like an object. In the film, the husband fires this caregiver. In real life, we have done the same when we found the caregiver just doing the job for a paycheck.

As Mark and I have gone through this journey and experienced a literal parade of personalities walk into our lives, we have come to realize that no one will ever be perfect. We also know our lives are changed forever and this is the new normal. Plain and simple, caregivers are part of our life now.

randy pipkin

They are not family, they are not friends, but they are companions who will help me and Mark get through the days, weeks, months and, yes, years ahead...

I feel good about my current caregiver situation. I feel lucky to have two great folks in my life. But I've "kissed a lot of frogs" to get to this place and I'm not above kissing more should my situation ever change. I won't settle and I highly recommend anyone else in a situation like mine not to either. Remember, a caregiver needs to care!

Randy Pipkin is a consummate ALS Fighter and 2013 national campaign chair of Breakthrough ALS for the ALS Therapy Alliance. He has also formed "Team Randy" for the ALS Association's Boston "Walk to Defeat ALS."

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