We are ravaged…

I read Karen Wilder’s (Gene Wilder’s widow) essay via ABC News this morning on the subway to the gym. Gene Wilder suffered with Alzheimer’s for 6 years before dying in 2016. Karen was his primary caregiver.

I was painfully reminded that “unlike other diagnoses, even some cancers, this one offers not even a shred of hope for survival.” Oof.

The words were a punch to the gut.

She detailed a bit about what it was like to take care of her husband day in and day out, but what I found poignant is that she spent a significant amount of time describing the other particularly cruel aspect of the disease — “In addition to destroying – piece by piece – the one who’s stricken with it, it ravages the life of the person(s) caring for its victims.”

Ravage. 

Yes, that is an ample way to describe it. We are tired. And we are ravaged. People have been asking me about my time at home over the holidays and while I don’t wish to burden anyone, I also don’t want to pretend and say, “It was great!” (with some big fake smile) because while we managed to have some great times and to laugh, there were parts that can only be described as agonizing. When people ask about my time at home, I say, “parts of it were really great and other parts were tough.” I thought that is a good/happy medium, but anytime I say it, my inner-self rolls her eyes and I think — God, words like tough or hard or difficult are such pithy words!! They don’t even come close to what it felt like.

I was ravaged.

At times I felt like all my insides were being sucked out of my body and what was left was some hollow vessel. Or maybe that the bottom’s of my feet has opened up and all the contents of my body just flooded out of me to the floor and all that was left was my outer shell. Don’t get me wrong — I kept my composure. Outer shell was kept very intact. As I explained in my previous post, it was important to me to stay calm and collected and not get upset because it was more important to me to not agitate my mom. I answered her questions. I responded to her without a flinch, topped with a smile or a well-timed joke. I’m a wiz at making my mom smile and/or laugh. I felt masterful, but on the inside…I wasn’t even sure what was on the inside anymore. At times, I felt empty and as if all I had known and all I had was flushed down the proverbial toilet anytime she would turn to me and address me as her friend or an aid as opposed to her child.

Imagine sitting with your own mother and having her talk to you not as her child, but as a friend or confidante and repeatedly ask you for confirmation as to whether her husband, her parents, and her brother are dead. Go on. Sit for a second and let that marinate. Imagine that. Imagine having to tell your mother that her husband, her parents, and her brother are all dead. Not once. No…that would be awful, but manageable. No…several times. Several times in a matter of maybe an hour…on Christmas morning mind you. It certainly isn’t something I wanted to tell her. In fact I hate telling her those truths. I try to avoid it at all costs, but the way she was working history out in her mind. She was trying so hard to piece it together. Her history. And she looked to me for answers. I had to put it together for her. She pleaded with me to put it together for her. And I just didn’t have the heart to make up some well-thought out/cohesive story as to them all being alive but think of a reason as to why they wouldn’t be here with us. I just didn’t have the energy. And I paid for it. I was completely emotionally exhausted before 9am. Because almost everytime I told her she had an emotional reaction. There were tears and crying and cringing. Punched in the gut over and over and over…and over again. And after a while she jumped off this line of questioning and thinking and moved onto other subjects, but I don’t have the luxury of forgetting. (I use the word luxury VERY loosely of course…) No…that experience stuck with me for the rest of the day…for the next several days. And obviously, I still think about it now a week or so later. It will stay for a while. Maybe forever.

It’s nails on a chalkboard…in a feeling, not just a sound.

As I moved through Karen’s article, I was startled when I read the statistic that 40% of Alzheimer’s caregivers die before the patient — not from disease, but from the sheer physical, spiritual and emotional toll of caring for a loved one with Alzheimer’s.

I thought I was going to be sick. My eyes immediately welled up. That’s nearly half. Not from the disease. From taking care of someone with the disease.

Christ.

That is some kind of sick dreadful…I don’t even know what. That statistic stuck in my mind all morning. After gym class, I was talking to a few friends and asking about their New Year’s resolutions. We all agreed that rather than resolutions, we would instead focus on certain goals…working towards something and not giving ourselves a hard time if we get there or not. It’s the effort and the journey after all. This is what we told each other anyways. When I was asked about my goals for the year, I immediately said, “of course, fitness wise – to complete my first full Ironman.” They both brushed it off thinking of it as a certainty which I thought was sweet. They are sure of my success and feel honored that they think so highly of me, but then I followed that up with wanting to continue to take care of myself. I said that I had made the decision to join a support group last year (for children whose parents have Alzheimer’s) and I’ve learned how to cope so much better as a result. I said that I wanted to continue to get better at coping, but I also just wanted to look out for myself. I didn’t know how important that was until I read that quote this morning. I told them about the quote and then I said, “I want to live.”

I want to live.

There it is. What a revelation. Tears welled up again at the realization. I was taken aback that I had said that out loud, but then I thought, why am I taken aback? Did I not want to live before I just said that? I’m not sure why it made me pause, but it felt new to say that out loud. It felt different.

My rage to live hit me in the face. It often does, but this morning it felt more significant somehow. Maybe because I had said it out loud…? I’m not sure, but I just know that there was something so incredibly honest and real about those words: I. want. to. live. And if I’m going to do that, I have to become even more self-aware and take care of myself.

Maybe like Karen, this is why I share. Not only do I feel that I have a responsibility to myself — to take care of myself and utilize journaling as an outlet for my grief, but also to others. Just like Karen — neither my love, nor science, is saving my mother’s life. But it’s my most profound hope that through awareness (and research of course!), others may be spared the experience that killed her husband, that is killing my mom — and could possibly kill me, too.

Anything can happen and nothing is safe.

But I must keep going forward. I must love my mom…love her fiercely, protect her, and care for her, but I also must continue to find my own life. My own impact. My own journey. My life depends on it. Onward.

Link to the article I reference: Gene Wilder’s widow on what it’s like to care for someone with Alzheimer’s