So, no background story in this episode. There is a lot to cover and I don’t want to blabber on.
Caregivers are the very foundation of my existence. I will die relatively quickly if I lose my caregiver team. That’s not an overstatement. I’m completely dependent upon others outside of the few things I can control with my computer. The good part is that ALS isn’t very complicated of a disease to manage, it’s just a lot of hard work. Anyone can be a caregiver or help perform repetitive tasks. The vast majority of what I need done is easy to get into a rhythm. For me, working smarter rather than harder is a priority. I make every possible effort to make things as easy as I can for my caregivers, at all levels.
The saying, it takes a village, is so true with ALS. Currently I have three levels of caregivers. Family. The Professionals, and the community, and I list them in order of importance. I’m going to try to explain in detail why I view my life this way. The short version is if I can have the day to day basics as close to automatic as possible, the greater the opportunities of raising my quality of life will be.
First is my family. I’m fortunate to have a large family that has committed to caring for me. They are with me 24/7 and always within ear shot. My brother is the buck stops here guy and this is something we established quite a while ago. Now, remember what I suggested earlier, you are the boss! The king of planet ALS. Never give your title away. Ever. So while I am the CEO of ALS, Todd is most definitely the President.
I intentionally include him and sometimes nudge him to know how to operate everything on planet ALS. He doesn’t have to do it all but he’s the expert. We go to great lengths to keep things simple and routine but something always breaks down. One of the tools we use is a fat, three ring binder with plastic sleeves. Every instruction manual gets put in the binder. Hoyar, Tobii, wheelchair etc. all go there. I have a small closet with everything ALS stored there. The binder is there, easy to find.
We also have a shared calendar called it’s all about Scott. It’s shared with my primary caregivers so nothing falls through the cracks. Medical appointments, dose reminders and date nights all go on the calendar. Everyone has lives outside of ALS, including me, and my team can enjoy their free time knowing I’m covered.
I’m fortunate to have a family that is leaning into ALS with me. Everyone pitches in when and where they can. Spread the work out as much as possible. My job is to contribute to the family where and when I can and to be as low maintenance as possible. I also get to spoil and enjoy my time with them. It’s a gift. That part is not lost on me.
It’s important for everyone to understand that as ALS progresses,my needs change, sometimes unexpectedly. I have a good sense of what is going to fail next and I try to anticipate it and talk about it with my team so we’re prepared. There have been times earlier in my disease when I
held back. Praying and hoping the day wouldn’t come for the next transition. Denial, pride and stubbornness were in full control but the inevitable defeat would come. Surprise! I can’t transfer to the bed by myself anymore. Hey! Guess what? Can’t wash my ass anymore.
I would be stressed, caregivers were stressed because I couldn’t fully explain myself because I had a mouth full of ALS. Tempers would rise. Chaos! Swearing. Hurt feelings. Misery would creep in. It wasn’t a good approach so I changed.
Nobody wants to be miserable. ALS is hard enough by itself. I quickly realized and accepted that I am the catalyst for most of what happens around me. I needed to swallow my pride and ask for help. The more specific I was, the easier it became for others to help me. For short term needs, having some good timing is a plus. I try to consolidate my needs so I’m not treating my cALS like a gofer. Gofer this or gopher that can quickly add up and burn out the best people , so you need to be careful. Obviously, emergencies pop up. I’m not talking about that. However, since I do practice this approach, when I eventually have an emergency, my team responds with urgency.
My Long term needs, which I define as 3 months away or more, require a different approach. And yes, three months is a long time with ALS. Might be great, or might I be dead. Personally, I’m shooting for not much worse. Anyway, for the long term I use lists and google docs. With lists, I share with the appropriate team members and use a checklist format. For example, I have a list titled Neurologist. Here is where I put all my thoughts and questions as they pop in my head. When I get to the clinic I can pull up my list. Magic!
At the moment I have a list for neurologist/doctor, grocery requests and one for miscellaneous. As things are checked off they move to the bottom. If I need more of something I simply uncheck the item. Simple but effective. My caregivers are notified of my changes but can respond to them at their leisure.
Google docs or whatever shared document you like. Email works too but is harder to keep organized. One of my favorites is my password spreadsheet. I have every login and password for everything on one sheet and it’s shared with the appropriate person. This obviously calls for a high level of trust but has to happen. When I die, my people need to be able to access and shut down my digital life . However you choose to do it, You don’t want to skip this step.
All of these little tools allow my family, my first line of caregivers, to provide for me while keeping their quality of life as high as possible. This means my quality of life remains high too, which is obviously the goal.
My next level of caregiver is the professionals. This is a large group and is subject to change. Hopefully not too much change but it happens. Here is my neurologist, PCP, physical therapist, eye doctor, dentist, professional caregiver, nutritionist, wheelchair guy, IT guy, yes I have an IT guy and you should too. I’m sure I’m missing a few but if they get paid, I generally lump them in this category. Some of these people I rarely see, but I have their contact information and I check in occasionally so they know I’m still kicking.
This next statement is probably a little controversial but I stand by it. In almost all cases, I know more about my ALS than the professionals. My, ALS. Unfortunately there are to often situations where I know more about ALS overall. This is because I’m a specialist. Like many pALS, I have become very well read on my disease because I really, really want to be alive! Go figure. I’ve mentioned before that I treat ALS as a business. I try to be as educated on the cutting edge because doctors are busy and expensive but also because it’s such a heterogeneous disease. I know what does and doesn’t work for me pretty quickly and I pay attention and note that. I share it with my team and sometimes they learn something and sometimes they roll their eyes at me. Either way they know I’m paying attention. I’m the boss. At least that’s what I keep telling myself. Hahaha.
I’m sure you all realize by now that good people are hard to find. It’s a real problem everywhere and it’s not going away soon. This is exactly why I do and say these things. All systems are strained right now because of Covid. It’s a bad time to be dealing with the medical system. If you can find a good professional caregiver, hold on to them like your life depends on it. I’ve been incredibly fortunate to find a good one but the process of getting there was long and drawn out. Too many times we would interview or just have to deal with people who are not qualified to deal with the needs of ALS. It’s not their fault most of the time. The medical system at large isn’t equipped to handle ALS. It’s just a fact. I’ve been in the thick of it.
In my journey so far I’ve had three types of caregiver. Friend, private and professional. My good friend Stefanie was my first caregiver. She stepped in when I didn’t even know I needed help. I don’t know if she knew better or maybe it was divine intervention? Whatever the answer, her timing was impeccable. Stef moved in with her dog Rocco, my second favorite dog ever, and pretty much just took over. I slept well that night and I know Emily did too. The unraveling had stopped for a moment.
When I woke up the next day it was a whole new world. Clean house. Cooking instead of pizza boxes. But most important, she was close by if I needed help or if there was any emergency. I didn’t really realize how much I had pushed my limits, endangering me and my family. Thank you Stephanie. You know how much I love you and appreciate you. I can’t say it enough.
My uncle Jim and aunt Kate rolled in with their RV and parked in front of my house. When you live in Lake Tahoe you get to be a popular stop for family and friends on vacation. Jim and Kate pulled in, planning to stay for a week or two. They ended up staying for several months. Stepping in so Stefanie could get back to work. They saved my life. I could no longer cook for myself, or drive. I was mobile but unsteady. I had completely lost control and was grasping. They saw right through my charade. Totally buggered!
With Tina’s advice, I interviewed and hired Nicky. Nicky is a professional, private caregiver. She is also from south London and cusses worse than I do. We were a match only ALS could bring together. At this point I was so overwhelmed I was just guessing. For me, our interview was a farce. I had no clue what I needed or what to expect. If Tina sent her, she stayed. I stuck with
my default position, if you can’t dazzle them with brilliance, baffle them with bullshit. Did I just make my computer say bullshit? Hmmmmm? Hmmmmm?
Nicky and I had a lot of firsts. She was so gentle as my pride and dignity were peeled away. The first layer was removed in the shower. I had made it in. Undressed. Then proceeded to sit there while the water provided cover for my sobbing. Nicky, I called out, I need help in the shower. I was terrified I was going to slip and fall. I was humbled and emasculated. Embarrassed. Defeated. That was the entirety of my day. Nicky dried me, dressed me and I crawled back into bed to sulk. I started questioning my resolve.
I thought I was tough but Nicky was tougher. I was an asshole, but Nicky was British. Aunt Kate is also British. I was outgunned. Hahahaha! I know I make jokes but this was a brutal time for me. I hide behind humor and sarcasm while being stubborn and absolutely defiant about what is happening to me. Sitting with a smile on my face and a song in my heart while my stuff is boxed up, while my corvette is sold, a for sale sign in my yard. I was broken. Nicky had to be tough. Everyone did. A normal person would have quit. I’m sure she thought about it more than once. No one would blame her. I love you Nicky. Thanks for staying by my side when I didn’t deserve it. I was a petulant little shit at times.
I think I’m going to stop here and break this up into two episodes. You will see that I prefer private caregiver services over a company but I want to explain why. It’s not an option for everyone either. I get that.
The key take away from all of this is to stay organized and be overly cautious and critical of who you defer to. It’s your health and your ALS and it’s unique. So be well informed, build the best team you can and trust your gut. Oh, and one last thing, don’t be an asshole wink wink
Besides, it’s only a mild case of ALS.
