Guilt...for EVERYTHING

There are so many things that people in the Huntington’s Community never talk about. Especially the Caregivers or Care Partners (whatever your choice of description may be.)

You think you know how hard this journey into Caregiving is going to be, but until you actually live it, you have no clue.

It’s easy for those on the outside looking in to give suggestions that they think are helpful but really aren’t.

One of the biggest things a Caregiver won’t tell you about is the guilt. Guilt for EVERTHING!!!!

Guilt because sometimes you can’t help your loved one the way they need or want to be helped.

Guilt because you have children at home with your loved one and sometimes you don’t mean to, but you come to depend on them some.

You feel guilty about the occasional help from your child because your child should be living a normal life, with normal issues and normal Everything.

Or there is the guilt because you “lost it” on your loved one and your child had to witness it or you had to ask your child to do something to help your loved one to try to keep from “losing it.”

The losing it being your mind, your sanity, your cool, you name it.

Guilt because your child can see how close you are to your wits end and steps in with a hug and says “Here Mom, I’ll go see what he needs so you can have a minute.” Or the “Dad, you’ve got to give Mom a minute, she’s in the middle of something and can’t come in here right now. I’m here, what do you need?” when his Dad starts calling for things.

Guilt because your loved one is suffering IN Huntington’s but you get aggravated because you have tried everything to help in the moment but can’t help. Even more guilt because you can step away from HD when you go to work knowing he can’t.

We’ve been dealing with the progression of Nathan’s chorea. This has been an uphill battle for a few months now. An uphill battle that seemed like there was no end, but hopefully is calming down.

The trying to find the new right dosage of medicine that helps control the chorea.

The feeling of every 5 seconds he’s calling out “I’m shaking.” OR the one that really hits, “I’m shaking, please help me.”

That please help me is a double-edged sword. One moment feeling like it’s a knife in the heart, the next feeling like you’re being accused of not doing enough.

Which leads to more guilt. Guilt of really losing your cool and feeling like you are the monster for yelling. Then comes the I’m such a monster and a horrible caregiver. The thinking of how much I’m not doing ANY of this right. Being the Caregiver nor the parent.

I’m finding, however, may I’m not the monster I think I am. Especially after speaking with a friend who was a Caregiver for her parent as well as tested positive pointed out that no Caregiver is perfect.

At some point, we’re all going to lose our minds for a moment. She called it the gold standard of Caregiving NOT perfect Caregiving. But we also agreed, these are the parts of Caregiving no one really talks about.

You hear about certain things, but we’re all so afraid of being perceived as the monster for when we lose our cool that we don’t talk about it. I’m so grateful to this friend as well as another whose husband also has HD.

I always described our feeling alone when Nathan was diagnosed, but the Caregiving portion is even more alone feeling than the beginning of this journey at times.

I’m thankful to my fellow HD Caregivers and the ability to share our experiences, the willingness to be open when so many are closed off in talking about the toll it takes on you as well at the HD Warrior.

I’m also thankful to discover I’m not the only Monster that loses her cool, but thankful for a warrior husband that once his Monster moments end, we can come together and apologize and try to make sense of things.

And I’m really grateful for a child who has a willing heart and loves his parents.

This HD Life (as I call it) “ain’t” easy or for the faint of heart. But something I’ve come to realize is the guilt feeling will always be there. Did I do enough? Did I do it right?

But the more important thing is that my HD warrior and child know that even when I turn into the monster, whether from being scared, frustration or whatever, know that no matter what version of Caregiver I am in that moment, the Caregiver as a whole loves them with all her heart.

-Heather Wilmoth