Welcome to part two of the caregiver discussion. I broke apart the episode because I really want to give proper time to the talk. Caregivers are vital to my foundation along with technology, family/friends and God. Not to much background story here, similar to part one. So let’s jump right in. Shall we?
When I relocated to Tulsa, I had no direction of where to find a caregiver. We decided to go with an agency and jumped right in. I quickly realized that ALS was too complicated for the average caregiver they were sending over. I also learned that there are laws, restrictions and policies that keep caregivers from performing the things I need. Feeding tubes, handling meds and transferring were all problematic or even illegal. I was paying for a minimum level of care but they weren’t able to really let my family back off a little so I had to rethink my plan.
The real problem, at least for me, was a lack of consistency between the caregivers. It’s exhausting and frustrating to have to retrain people day after day. It’s also difficult to explain or teach when I can’t communicate. Taking my computer into the shower or sitting on the toilet really doesn’t work well as an option. The worst of them didn’t even bother to try and understand and just ignored my sounds and blinking eyes. Don’t get me wrong. Most were well intended but they were set in their way. That’s not going to work for me, because it’s all about me. Ya know?
I was always on the lookout for more qualified help. I was fortunate enough to meet Vanessa. Confident and caring. Smart and anticipatory. Solid work ethic and a good sense of humor. A caregiver unicorn! I knew I wanted her on my team so I started chatting with her and she agreed to help me full time. I found two unicorns, truth be told. But the second one quit for personal reasons and I’ve never been happier.
I’m not sure people out there understand that insurance doesn’t cover caregivers. It’s a big problem for a lot of people. I do understand that not everyone can afford or even find private help, but it’s in your best interest to get as close as you can, however you can. The reality is that I need to find at least one more vanessa. Everyone has lives outside of ALS but I still need care when Vanessa goes on vacation or gets sick or whatever. I also understand how expensive this all is but I have to find a way. We all do.
The caregiver term is used often but I really prefer the term assistant. It’s broader and more descriptive of what is really taking place, at least in my life. Beyond the day to day repetitive stuff, Vanessa helps me to navigate all kinds of things. Paying bills, shopping, trips to the zoo or whatever. She even helps with the podcast. I wouldn’t be able to do any of these things without her. We’ve leaned in to ALS together and it is probably adding time to my life. Also, I want to express to everyone that, just like you, I am making this up as I go. I’m no expert. I’m driven by a strong will to live.
It’s incredibly important that you trust your caregiver/assistant. Not only will they care for your needs, they will be in your house and around your family. If you’re unhappy with your care,
either fix it by addressing your concerns in writing and retraining or seek out a replacement. I know these choices can be difficult but you are going to get exactly what you settle for. Here is an incomplete list of what needs to be done. Bath, ears, nose, finger and toe nails, laundry, house cleaning, bipap, cough assist, suction, feeding, medicine, handicap van, wheelchair maintenance, Tobii computer, mail, bills, schedule, communication with others, bathroom, teeth cleaning, light shopping, taxes, first aid, cpr, wound care, translating, body guard, physical therapy, comedian, travel companion and drinking buddy.
I’m not sure that’s half of it.
Overall, the best thing about Vanessa is that she is tough. It’s paramount really. I have been surrounded by strong, tough women my entire life. It’s without a doubt that I’ve lived this long because of them and because they haven’t killed me yet. Tough is important because everything about ALS is so hard. Physically, mentally, spiritually. There are times when I need to be pushed or pulled back, times when I need to be told no. That doesn’t mean I’ll actually listen, but that’s not the point. Being a caregiver is fucking hard! Knowing this it’s important that we, as pALS, don’t make it harder.
The biggest gap between caregiver and me is that caregivers are taking care of my daily physical needs. While they do this my inner toes are tapping because I want to get on with life things. Get me out in the sun! Go hear live music or see a play. Sometimes We are operating with opposing senses of urgency. They are being careful with me. Some even perceive me as fragile, which I might very well be. But I sure as hell don’t feel fragile. That’s really the ALS paradox, isn’t it? I’ve never been healthier or more mentally acute, my body never weaker. I’m ready to go anywhere and do everything and I can’t move an inch.
Something else that I’ve come to accept is I am at the mercy of my caregivers schedule and even their feelings. If they are going to bed early, so am I. If they are full from eating, I must be too. Is it hot in here? Me too. None of this is bad. It’s not a complaint either. Just observations over time. I make an effort to keep my vibes high in all situations, but it’s easy to get swept up in the moments of others. This is just part of the program. I’m along for the ride.
For a while I was self conscious about a stranger, and everyone else really, looking over my shoulder, being within earshot of private conversation, opening my mail. Almost all of that privacy is gone now. To try and hold on to it was slowing me down and pissing me off. Now, Unless it’s top secret, I don’t think twice about it. I have stuff to do and if people want to watch, let ‘em.
Now, I have a little momentum and it feels good. Now, when people look at me, they are forced to look beyond my wheelchair and gear. They can ask what my disease is. It’s important that people see ALS, because it’s not rare. It’s just not seen often. I know I have a chip on my shoulder. My ego is still as big as it ever was, but I don’t think I’m special. I want others with ALS to know that there are opportunities out there to keep going. To continue to contribute and have value to the community, to family. Whatever it takes to squeeze every drop of life you can, while you can.
This is why caregivers are so important. For the moments. While this might be evident to others I missed it until I joined the ranks of the disabled. I just didn’t see it properly. Obviously everything has changed. I’m grateful that I have the opportunity now to help others. To help push things forward for ALS. For accessibility. My entire team is incredible in what they do for me. They sacrifice a lot for me. They don’t use words like sacrifice or burden, but I do. ALS is heavy and it pulls and distorts everything with its gravity. We all ignore it and pretend it’s not there but I know.
I think I’m going to stop here and regroup. I’ve gotten off track and a little worked up emotionally. Sometimes defiance seems like desperation and I don’t want to go down that path.
I’ll end with this quote, one of my favorites. If I have seen further than most, it’s because I stand on the shoulders of giants. I guess I get to travel further than most because of my caregivers. I’m blessed. I know I am.
Get out there and give them hell! Besides, it’s only a mild case of ALS.
