Caregivers Gratitude and the Journey Through Holland

Most of what you read about treatment emphasizes that gratitude plays a major role in recovery. However, what is often overlooked is that gratitude often looks and feels very different for caregivers. 

Before caregivers can experience heartfelt and genuine gratitude, they often need to go through a grieving process. Parents of those with a chronic condition must first accept that their lives will not follow the same path as others. Milestones, accomplishments, and triumphs all look and feel different. The recovery process of a loved one is often not linear and may take years, leaving caregivers living on pins and needles and wondering when the other shoe will drop. 

Some of the basic entities that others may take for granted are completely out of reach for those trying to recover from a substance use disorder.  The below is a poem that begins to describe what it is like caregiving for an individual with a chronic condition.   

A Poem That Resonates 

Welcome to Holland 

By Emily Perl Kingsley ©1987. Reprinted by permission of the author. 

I am often asked to describe the experience of raising a child with a disability—to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this... 
 
When you're going to have a baby, it's like planning a fabulous vacation trip—to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. 
 
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, 'Welcome to Holland.' 
 
'Holland?!?' you say. 'What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.' 
 
But there's been a change in the flight plan. They've landed in Holland and there you must stay. 
 
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. 
 
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. 
 
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts. 
 
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say 'Yes, that's where I was supposed to go. That's what I had planned.' 
 
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. 
 
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland. 

Reflections for Caregivers 

For those caring for children with mental health or substance use concerns, we often hear about Italy—and some of us don’t even want to admit that we’ve landed in Holland. We pretend we’re in Italy, even though deep down we know we’re not.  Some of the basic milestones that other parents experience, such as soccer games, prom, and homecoming, are luxuries that some caregivers don’t have the space, time, or resources to focus on. There is a life-and-death battle occurring! Caregivers have conflicting feelings—part feels angry for not being able to experience normal milestones, and yet they know that the individual they are focusing on is fighting a much more important battle 

Instead of pretending, we need a massive shift in perspective: to recognize that we are in Holland and embrace the small daily rewards. Caregivers cannot look too far into the future—it’s uncertain. Instead, focus on the small wins: a genuine smile, leaving the bedroom, telling a joke, taking medication independently, or being able to retell what they learned at treatment. This is not an easy ask. We vacillate. We want to go to Italy, especially if we are surrounded by others who are in Italy. We become angry as we hear about all of the normal milestones. We have to go back and reevaluate and remind ourselves, again and again and again, that we are in Holland. This is the cycle and it goes on daily (sometimes hourly). And for those individuals who have lost loved ones to the disease, this is even more heartbreaking, knowing that they but will never experience any of the joys they expected with the individual for whom they were caring. 

We need one another—people who understand our wins, fears, and tears. If you’re still trying to keep up with the Joneses in Italy, it will only lead to heartache. Find a group of individuals who understand. Those who are in Holland with you. You can do this, and you are worth it. 

Closing Thoughts 

Caregiving is a journey that requires resilience, community, and self-compassion. Celebrate the small victories, seek support, and remember—you are not alone. This journey is NOT Italy, but it has its own beauty waiting to be discovered.