If you’ve been following my blog, you know that my wife was diagnosed with Early Onset Alzheimer’s last summer. Our family has pivoted to life with Alzheimers.
We’ve had ups and downs, but it’s consistently been hard for our family. I haven’t wanted to write for a while, but I figured it was a good time for some reflection.
I work with wonderful, compassionate people, and many have asked how my wife is doing and how I’m doing. They’ve told me that knowing about what’s hard for me helps them talk about their hard stuff. I know that therapists aren’t “supposed” to self-disclose too much. But part of why I’m good is that I’m open and honest. I tell people I’ll answer 99% of their questions, and they probably wouldn’t want to know the other 1%.
An interesting question
The other day a client asked me if anything positive has come for me from my wife’s Alzheimer’s. It felt intense, but I appreciated it.. I’ve known him for a long time, and he asks me challenging questions from a caring place. His timing was interesting, as I’d been reflecting on this recently.
I’ve developed into a much more confident and decisive person. My nature is to look at both sides of things and recognize pros and cons and struggle making decisions. Stephanie was much more decisive and opinionated. Unless it was a “big deal” I tended to go along with what she said. Now, I make 95% of the decisions: where we go, how we budget (or not,) pay our bills (not a historic strong point,) etc. I try to involve her in the decisions, and I ask Kevin for his opinion on many things. But in the end, I decide.
I hate telling people what to do. But it’s my reality now. Being clear on what we’re doing and laying it out one step at a time works best with Stephanie. It also helps keep me from getting overwhelmed.
I’ve always been a very nice person. Silly and sarcastic, but at my core damn nice. These days, I’m kinder. When I’m around my wife (which is 145 hours a week, including sleeping,) I’m super patient and kind. I’m still super silly, but in a gentler way, where I often tease myself.
I’m also much more patient. Shit happens, and I just roll with it. Most of the stuff that used to bug me is so minor that I let it roll off. Who cares if someone cuts me off, or snips at me, or says something mildly annoying? I just ignore it and move on. Of course, I’m very protective of Stephanie. Otherwise, I just don’t care. I don’t have time for stupid stuff.
I’ve gotten much more organized and dependable. In the past, Stephanie kept track of everything, our schedule, meal planning, and tons of things I had no idea of. I did a lot, but not generally in an organized fashion. Having ADHD didn’t help. But now that I have to remember everything, I have no choice but to keep it filed away in my brain.
And with this, I’m done writing. It’s 545, and I need to be home by 610.
Let’s look deeper
As I said, I work with many, many wonderful people. In a session last night, a client talked about the difference between being nice and being kind. Nice is great. Being pleasant. Being polite. Being generous. It’s nice to be nice.
Kindness goes deeper. She described it as, “coming from a place of thinking strictly about the other person, when there’s no benefit for you and (quite possibly) is not convenient.”
Sometimes it doesn’t matter if your choice comes from being nice or kind. People need our help, and we help them regardless of our motivation or lack thereof. But a place of kindness is purer.
I’ve always been a very nice guy, and I’ve often been generous with my time and efforts. But if I’m frank, most of the time I’ve recognized the benefit for me. I do good things, in part because it feels good to have others tell me how much they appreciate what I’m doing. But this outer approval isn’t enough.
I recognize that I’ve become much kinder. My life is centered around my wife and making sure she is well cared for. My schedule is set based on her schedule. I am aware all the time of helping her feel as emotionally and physically safe as possible. I am not doing what I do because of the recognition I’m getting. (And countless people have complimented me on how wonderful I am to care for my wife and family as I do.) I do what I do because I love my wife and son. We were not expecting that Stephanie would have Alzheimer’s. But we’re resilient and pivot constantly.
Cynical. Here’s why
Since I’m cynical, I’m busting myself out. Bragging about how awesome I’ve become helping organize everything. But let’s be realistic, sometimes a guy needs to pump himself up. #LWFA (Life with f…… Alzheimer’s) is really hard, and I need to keep myself moving forward and being the person I want to be. I’m fearful about the future. Alzheimer’s is devastating and sneaky, and Kevin, my favorite person in the world, is off to college in the fall. I’ll pivot, sure, but the challenges will increase.
As my therapist told me, it’s good to keep an eye on the future, but stay in the moment as much as possible. My mind can wander to desolate places, but when I keep moving forward and thinking as positively as I can about the current moment, I’m the best version of myself. And with this in-mind, it’s time to pick Stephanie up from her program, do a little shopping and head home for dinner. I have something in mind to try out that should be yummy. The Dodgers and Giants are on later. And, most importantly, the Lakers are in the playoffs. We are rooting very hard for them. They have injuries that are daunting, but we’ll be with them the whole way. They’re up 3-2, but it’s nip and tuck. They need our help.
.
Go Lakers…
The Answer is Always Yes!
As I said, I hate making decisions. Stephanie doesn’t talk much and asks for very little. I’ve told her many times that whenever she wants to do anything and tells me, the answer is always “yes.” She told me that one of her favorite things is to go to Temple Coffee and people watch. Everyone knows her and automatically starts making her favorite drink. We find the comfy chairs and do our thing. 5-6 days/week. She likes how it feels to be out and about in the world, as much of her life seems focused on her Alzheimer’s care, etc. This feels great to her. YES!
We’ve also started having tea outside in the morning. Our Poppies cover our backyard, and the hummingbirds are visiting our succulents. I’ve worked really hard on our backyard, and I enjoy the beauty. It’s a peaceful way to start the day.
Sometimes I ask leading questions. Would you like a massage? Stephanie was all over it. And the answer was “YES!” She loved it and will go every other week.
Great, Stephanie is well cared for, and I am pleased with my evolving kindness. So why am I struggling a good part of the time?
Until next time…
