I feel as if I’m living two separate lives.
One life is when I’m here, in California, working from home, hanging out with friends, still working through my knee recovery, and thinking about the future. The other life is when I’m in Arizona, helping to care for my mom and support my dad as her primary care giver and trying to live as much in the present as possible.
I was recently listening to a podcast episode on anticipatory grief, and the guest was talking about her experience with anticipatory grief as she takes care of her mother who has Huntington’s Disease. She was explaining how grief is a physical experience and I couldn’t agree more. Lately, when people have been asking how I’m doing, I can really only respond with “I’m tired or I’m exhausted.” It’s a different kind of tired of just not getting enough sleep, though I’m definitely not getting enough sleep–it’s a mental, emotional, and physical tiredness of being in flight or fight mode–especially when I’m in Arizona.
I’m really struggling right now, trying to come to terms and have peace that, for the foreseeable future, there’s a kind of rest that I will not be able to have. That, as long as my mom’s alive, I’m going to be tired–emotionally, mentally, and physically. And then, when she’s not here anymore, that heaviness of anticipatory grief, will just turn into grief and I will be tired–emotionally, mentally, and physically, in a different way. I’m also struggling because it’s so much harder for me to do things that came more simply to me: staying in touch with people is so hard, and I need people more than I ever have; finding energy to give 100% to my knee recovery because of my tiredness; trying to problem solve at work–I swear my brain can only do so much; exploring the city I live in–it’s so much easier with my tiredness to just stay at home.
What’s MSA?
Multiple System Atrophy (MSA) is a rare, neurodegenerative disorder that affects the automatic nervous system and motor control. For 12 years, we thought my mom had Parkinson’s–and I’m not saying that she was misdiagnosed at all, but once we were able to receive an MRI of her brain, it was clear she had MSA. One of the ways you know MSA is different from Parkinson’s Disease (PD) is the rapid health decline of the patient. For example, 50% of MSA patients are wheelchair bound 5-6 years after diagnosis. People with MSA have autonomic failure in the neurologic systems that control the automatic process of the body, such as blood pressure, urination, sweating and bowel function.
Maybe one day, I’ll talk more about the details of how this presents in my mom, but I firmly believe that while she’s still alive, I want to protect her and her dignity.
Getting older
I think in the back of our minds as we grow older, we know that most likely we’re going to outlive our parents, but we never really stop to think what that really looks like. I always thought I’d deal with it when I was 50 years or older. But now, that clock started ticking when I was 23. And here I am at 35, having much different conversations around what the next six months of my life just might look like.
It’s heavy. As I mentioned in my previous blog post, I know what the end of my mom’s life looks like–at least what her wishes are, what we’ll do her body (donate it to science), the funeral has planned, etc. But in the meantime of then and now, I just watch her body slowly stop working. It’s nothing I would wish on someone. My mom, at times, still is my mom–like worrying about my graduate school student loans and how I’m going to pay them off with our dumbass of a president. And there are times, where I don’t think she can focus on anything else, but what she needs in the immediate future, like being able to sit up, the food she’s craving or watching Dateline at 3pm. Her brain is no longer sharp–you can see how much time it takes for her to process things, like jokes. That, in and of itself, is devastating, because she was a force. She still is, but it’s very different now and I have to grieve who that person was and I’ll never get the opportunity to meet again.
Caregiving in Arizona and caring from afar
After forcing my dad to spend a few days with his family and taking over the primary caregiving of my mom back in November, I knew I needed (and could, thank you flexible job!) to be more active in her caregiving. So, for the last six months, I’ve been spending two weeks every other month in Arizona to help care give, help around the house, give my dad some needed breaks and, of course, play with the dogs.
The week before I go to Arizona, I spend mentally and emotionally preparing for being there. Whether it’s right or wrong, this usually means not doing a lot socially and let’s say withdrawing from normal things I’d usually do. To put it simply, I’m gathering and storing as much energy as possible to be able to use it when I’m in Arizona. This usually means I’m flaking out on friends, and invites, not responding to text messages as quickly, and sleeping as much as possible. I feel incredibly horrible, like I should be doing more, but I haven’t come across a better way to take care of myself.
Once I get to Arizona, my time isn’t my own. I’m constantly in fight or flight mode. Constantly checking in on my mom to see if she needs anything. She still wants to be so independent, so we have to keep an eye on her, in case she’s feeling impulsive and gets up to do something without her walker. I’ve learned, in caregiving, there’s such a fine line between giving them space to keep their independence, while also making sure they don’t do anything to potentially harm themselves. I don’t have time to check in with myself. To process what I’m experiencing. I’m caught between helping to take care of my mom and taking care of my dad. My eyes have been opened to how much goes into being a primary caregiver and I’m constantly worried that my dad is burning himself out taking care of her. I mean how can he not? That’s what you do for people you love.
Back to life in the 510
Then when I get back home, I, usually, throw myself back into what my normal life looks like in California. There’s never enough time to go from Arizona and California. Often times, I’m flying back and immediately getting on a call and throwing myself into work. Once my brain gets a minute, it starts to immediately crash. Like there’s space finally to process all that I experienced while taking care of my mom–it’s heavy, it’s more than one can probably handle, it’s overwhelming–and yet, I’ve gotten into a rhythm (not well, but it is what it is) of doing this.
I’ve felt like I was drowning while trying to exist before, but this, this is different. There isn’t a light at the end of the tunnel. My mom will continue to feel pain as her disease continues. My dad will continue to be exhausted as he tends to her, while celebrating 38 years of marriage–you know, in sickness and health. And I’m stuck feeling guilty when I have a good day back in my home.
Yes, California is home to me. I can honestly say, it’s one of the places where I can honestly say I feel at home. Don’t believe the other posts where I talked about home being Tennessee or Ohio–those were lies, or at least not the entire truth–I know more about what I need for a place to feel like home. THAT BEING SAID, I get by with the help of my friends and medication and acknowledging how difficult this is. Living in between holding moments of joy in one hand and holding the painful moments of grief. It. Is. Exhausting.
So this is my life as of late. It’s why I’ve been absent. Why I’ve flaked. Why I can longer respond to text messages, TikTok videos and the like, like I used to–my head is barely above water. I know y’all are understanding. I know I can’t be superwoman, though I try, I really do. I don’t believe I need to explain what my life is like to anyone, but I want y’all to understand my life is shitty right now and I don’t know when that will change–at least for the foreseeable future–and that feels heavy in and of itself. Who wants to sign up for that?
Lauren, I want to help…
I swear, with tears in my eyes, I hear you and I want to give you that, I do, really. As I’ve thought about tangible ways to let people in and how to help this is what I’ve come up with:
–ask how I’m doing. I might not respond right away, but if I ever cross your mind, just send me a text or DM. Ask if I’ve eaten that day. Sometimes a doordash or reminder to eat, shower, movement, etc, is exactly what I need to help me, help myself and others.
-schedule a call or FaceTime. scheduling something feels wayyyyyy better than just out of the blue, unless you’re a select few. It takes a lot of energy for me to take an unscheduled call/FaceTime, but to schedule something–I can better prepare and be more present with you. Also be prepared for me to reschedule. I only have so much in the tank every day.
-ask me to do something with you. most of you know me as the person, who’s always scheduling things and throwing out ideas of ways to have fun, but honestly, it’s sooooo difficult for me to follow through with a lot of these things. If I can just show up to something that’s already planned, I can tell you, I’m more likely to show up than something I have to plan from scratch. It’s an energy thing and I’m doing my best.
-be patient with me. I don’t always know what I need anymore. It’s also really difficult to let y’all in, emotionally, these days with all that I’m dealing with. Keeping myself alive, is HARD, but it must be done. I’m not mad at you. I might be ignoring you, but I’ll come back, eventually. Y’all know, I’ve struggled with my mental health, even before my mom’s health became what it is. Trying to take of myself and my family is HEAVY and I’m trying to find the balance, every day, of how I can show up for people, while showing up for my family and myself. There’s no manual of how to do this and obviously, I have better days than others.
-give me space to be a mess. grief is messy. grief is exhausting. I’m not myself and I acknowledge that. Stick with me please. this is some of the hardest stuff I’ve ever been through. I will probably cry when I talk about my mom and how heavy this is. I know things won’t get better. be prepared to sit in the uncomfortability of grief. Also funny TikToks help save my life–I promise.
Lauren Brooks 