I was on a cross-country business trip when I got the midnight call that my mom was dying. She was in the ER and not expected to live. A paramedic told me she probably wouldn’t be alive by the time I could make it back on the first flight. 

Then he proceeded to scold me, telling me how Mom probably wouldn’t be able to make it out of the house in time if there was a fire because it had too much stuff in it. 

Well, dear reader, spoiler alert: There was never a fire.

As he well knew, she was never going to be back in that house. But that wasn’t the point. His goal was to shame me. It wasn’t enough that I was roiling with shock and grief.

He wanted to make it clear that he was condemning us, the way he wanted to condemn our house. To let me know, “Hey, your mother’s dying and you’re an awful daughter for letting her live this way.”

His comment was pointless and cruel. Sadly, it’s also not entirely uncommon. I’ve had others tell me of loved ones who had medical emergencies and were mocked or chastised by the responding emergency medical technicians for having so many things in their homes. 

Don’t Be a Judgey Judgerson

Now, I don’t think all or even most first responders behave this way. However, it shows there’s still a big gap in understanding and responding to mental illness, even among medical professionals. It also demonstrates how comfortable some people are in expressing their personal judgments when it comes to hoarders. Unfortunately, that approach can shut people down from seeking help. 

Was I worried that some disaster could befall my mom in that house? Of course. Did I also try to convince her to move to a safer environment? Of course. 

Fear Overrules Comfort

What’s so hard for others to grasp, to really get, deep down, is how attached someone can be to their things. To understand that the fear of having to survive without their things is far greater for a hoarder than the discomfort of living amidst way too much stuff.

Even if being around her stuff meant her health could suffer and meant there were possible dangers to face, Mom had no desire to move somewhere cleaner and safer. 

Hard Choices 

To do the conventionally right thing would have meant moving Mom somewhere that gave me more peace of mind but removed her power and made her fully dependent on others. 

It was bad enough she couldn’t drive any more and had to have strangers come into her home to help care for her. I’m certain that having one of her kids negate her remaining independence would have led to an earlier death. 

She would have died from the misery of being removed from all that was familiar to her.

The home where she’d lived for more than 40 years, where she’d loved her soulmate, raised her children, and tended her garden. The large community of friends, colleagues, students, and church members. 

Can you imagine what it would be like to have someone exercise carte blanche over her things, the treasures she’d collected over 70+ years, the items that she considered to be not merely objects but her physical memories, her experiences, her sense of security, her identity? For someone who was already experiencing the loss of her mental memories through neurological decline, can you consider how devastating that would be? 

But I Digress…

So, back to getting lectured by the paramedic. The only saving grace was that it was me and not my mom who was having to hear this. 

Look, I knew that our choice to keep Mom in her home would have consequences, and one of them was going to be taking criticism from strangers. I could be the human shield for their complaints, while she could get the care and sympathy she needed from them. When it comes to someone judging me instead of them being mean to my mom, zero fucks are given. 

You see, I get where the paramedic was coming from. He’s got a ridiculously stressful job that is focused on health and public safety, and he wasn’t wrong in his assessment. But his comment was worse than meaningless in that situation. 

He could have taken a moment to consider that someone who hoards so many items has more than a simple clutter problem. He didn’t know or seem to care how that home, as messy as it was, was somehow better for my mom’s health and psyche than a place that was tidier, physically safer, and more appealing to someone like him. 

Live with Meaning

Before my mom got sick, something compelled me to check out Atul Gawande’s book “Being Mortal” from the library. I’m so thankful, because the book helped me understand how it’s more important to make someone’s final years more meaningful and happy than it is to simply prolong life and make their world safer but smaller. 

Gawande shared personal stories and research that helped me realize how a decision to move Mom against her wishes to a facility near us would’ve been a selfish one. It might have made me feel better in terms of her safety but would’ve taken away what was dear to her and caused her pain in the remaining year of her life. 

Love, Not Fear

The book and my instincts taught me that you have to act from love, not fear. 

Sure, you should take steps to make someone safer. Safety is not a bad thing. But it’s not the only thing, nor even always the most important thing. 

As for the people who pressured us to move Mom closer to us, every one of them came up to me at her funeral and told me, “You did the right thing by letting her stay in her home.”

I didn’t do it for their belated approval. I didn’t do it for me either. I did it for her. 

Consider Compassion

Whether you knowingly interact with hoarders or not, here’s a good rule of thumb: Consider the context of your conversation and the situation, and speak with compassion. Your words have the power to open people up or to shut them down. If they know you want to help, you have a far greater chance of working with them to address their hoarding issues and implement some harm reduction steps.

Have you faced a similarly difficult choice with your loved one? How did it go for you? Please share your thoughts and advice in the comments, and please share this post with others who you think it might help. 

Also, read “Being Mortal: Medicine and What Matters in the End” because it will change the way you think about aging, health, and death.

Hope and joy,

Rachel