Tears and Taco Bell

This is the ultimate test in burnout recovery.

Moving your aging mother in to live with you and your husband.

In so many ways, I feel uncertain. I don’t know if I’m holding true to the original intent of this newsletter (and if that even matters if I’m not). I don’t know where I fit in with my peers and the world at large anymore. I feel uncertain about the path forward for my mom’s health and well-being. I feel uncertain about my path and well-being.

When I started this newsletter in February, I thought this would become the thing that I did. It would become my major hat that I wore. A month later, I was elected to be board president of a small, all-volunteer nonprofit that needed more structure. That became my major hat. Then, two months after that, we made the decision to move my mom in with us and that has become the hat that I wear almost exclusively.

I am a stay-at-home daughter.

And it’s really fucking hard.

I know that this is a time of transition. I recognize that things will not always be this difficult. As I’ve said before, there will be good days too.

But, this week, I had a really hard day.

It was a hard day for a few reasons, but mostly it was because I saw so clearly my challenges as a caregiver while watching the struggles that Mom is dealing with.

While one of the reasons we made this move is because of my mom’s loneliness, there is another, more challenging reason why she needed to be closer to us.

Last year, after a fall induced by vertigo put my mom in the hospital, she had an MRI done that revealed a condition that explains so much about her deterioration over the last few years.

Normal Pressure Hydrocephalus (NPH) in basic terms is when you have too much fluid on your brain. The symptoms are what many of us consider normal signs of aging: difficulty walking, lack of bladder control, and dementia.

It’s why NPH is under- or misdiagnosed.

Because, without brain scans like CTs and MRIs and tests like lumbar punctures, you can’t confirm this is what is going on in your body.

While no one wants to land in the hospital because of a fall, I’m deeply grateful my mom did because it meant she did get all those things that led to the diagnosis of NPH.

And while no one also wants to be diagnosed with something that sounds as scary as NPH, there is a treatment for it that, from what I understand, can make all the difference in the world.

However, that treatment has terrified my mom for the last year and so she has refused to consider it. I haven’t blamed her for being scared. The treatment is a shunt that drains fluid from around your brain into your abdomen. To her, that sounds like brain surgery (which it isn’t) and she has adamantly refused to have it done.

Without the shunt, her prognosis is only that of decline. At her last neurosurgeon appointment in New Mexico, I directly asked what the end would be for my mom. It’s dementia.

That is what kills you in the end with NPH.

Without treatment.

This is all heavy and I didn’t really intend on getting this far into her diagnosis today, but it seems to be necessary to really share where we are at.

Because it’s all part of why I had a really bad day this week.

In the month that we’ve been in this new normal of living together, she seems to have gotten worse with both her struggle to walk and her memory.

She knows it too.

I knew that she wasn’t going to be able to live on her own much longer. That her independence was slowly slipping away and with her refusal of treatment, it would only slip away faster.

Having her here means that she won’t slip away alone. That we can keep her active and engaged which might keep that future state from descending too soon.

Keeping her active and engaged has, turns out, had another effect.

She now wants the treatment.

She now finally sees that she can’t decline like this. That she does have reasons to want to live a higher quality of life.

I had hoped she would eventually have this realization once she moved in with us. I did not expect it to take less than a month.

Of course, the irony of all this is that if she had just had revelation before moving in with us, she could have kept her independence and I could have kept my writing room.

I kid, of course, as I am beyond grateful that she is now open to the shunt. Because things are only going to get worse if she doesn’t, and it’s already really hard.

Which leads me to the bad day this week. And why tears and Taco Bell saved me. (You knew I’d get to the title eventually.)

It’s always disorienting to move to a new town and have to find where everything is. My mom is still driving during the day and I want her (for the time being) to be able to go to the store on her own if she needs or wants to. My goal has been to get her comfortable in our immediate area - driving to the grocery store and the post office. To get her comfortable, when we go out, I have her drive and guide her.

This week, when I needed to go grocery shopping, I asked her what was on her list of items. As we talked about it, she started to think that maybe she needed to go for some of the items. So, we decided that maybe she was ready to go out on her own.

She made sure she had her phone, and I put the navigation on it so she could get to the store. We left at the same time - her to her store and me to mine.

I can laugh about what followed now, but at the time…you know how it goes.

The long story short is that Mom got lost and I’m just grateful she didn’t get into an accident.

Even doing everything I could to help her succeed at a trip to one store, it felt like almost everything went awry. It involved happening upon her parked car at a store that was not her destination, having her follow me out of the parking lot only for her to stop following me almost immediately by getting into the wrong lane, flashing my lights frantically at her to get into the correct lane, and gesturing wildly once I was in front of her again to go left which promptly meant that she went right.

Again, comical now, but incredibly frustrating and stressful at the time.

She made it home in one piece and didn’t seem too bothered by the whole experience.

I, on the other hand, was a basket of frayed nerves.

My body was wound so tight I couldn’t relax.

And Jake and I had a date night.

Being that wound up meant that when he asked how my day was, I could barely form a sentence to explain it.

I was barely keeping it together when we sat down at the restaurant to eat before a show. Talking in circles about how hard the day had been. How difficult it is to watch Mom struggle with basic tasks like emptying the dishwasher. Mentioning that we probably need to find some type of support to help us better handle her dementia.

When the food came, I stared at the plate and tears started to swell.

It wasn’t what I ordered.

One more thing going wrong — even though it didn’t matter at all — broke me.

I hung my head and put my hands to my forehead, letting a few tears fall.

And my darling husband said the only thing that could make it okay to cry - releasing me from having to hold it together any longer:

“It’s okay. You know we’ll get Taco Bell on the way home.”

And I lost it.

I sobbed and cried and laughed and felt a sense of relief I hadn’t felt in weeks.

You see, I’ve been crying in private lately. Not a lot, but a few days here and there over the last month. I know better than to think my mom and Jake are oblivious to this, but I haven’t wanted to acknowledge or release these emotions in front of them.

It’s what I do when I’m particularly overwhelmed. I go inward. I hold it inside and do not share what I’m really experiencing. It’s my version of survival mode.

It’s one of the ways that my burnout can get worse.

And I’m trying desperately to not burn out again. Because burning out while being a stay-at-home daughter, a caregiver, is not going to serve anyone. Oxygen mask and all, you know?

That is why tears and Taco Bell saved me this week.

The tears were no longer private. I was completely vulnerable, sitting in a restaurant sobbing. And Jake didn’t even blink. He knew I needed the release. He knew I needed to laugh too. And he helped me do both.

Being a full-time caregiver while navigating burnout and trying to recover from it is not easy. There will be bad days again. I will be tested again and again. Patience will be hard to find some days.

What I need to remind myself of is that the only way to get out of survival mode is to open up to others. To be vulnerable. To shed the tears in public. To acknowledge that I can’t do it all. To ask for, and more importantly, accept help.

It feels like I turned a corner this week. That the first month of this new situation is done and that we are transitioning out of the transition.*

I am more hopeful of the future. She will get the shunt and a new normal will arrive, one that means she will maintain her independence longer. That she’ll have fewer symptoms of dementia. That she’ll be able to walk better and do more things. That I won’t have to do more and more for her - at least not for a while.

And in the meantime, there will be more tears and Taco Bell. Thank goodness.

*Which is still a transition but at least it’s moving forward, right?!?!