Dear Mom,

Do you remember when I was a child and I said I wanted to live with you forever? You swore I’d change my mind; you said I’d grow up and want to be with my friends. I thought you were crazy! Where would I ever have more fun than the two of us had together? 

Truthfully, we were both right. I did eventually want to live independently. I longed to be a mom, making fun memories with my own kids, then dropping them off at their grandma’s house for even more excitement. Missing out on that experience has been a crushing blow. Nevertheless, I can’t imagine a happier, more peaceful home than the one we’ve shared for the past 42 years. 

But preschool Nikki never thought “living together forever” would mean you’d be my lifelong caregiver. I never considered my capable, athletic body could fail at all, let alone require about 20 neurosurgeries. And that fiercely independent, ambitious child certainly never envisioned being unable to work, do her own chores, or carry out the normal activities expected of adults. I was picturing an eternity of quiet lunches followed by us hanging out together, just having a good time.

Okay, maybe I did nail that part of the vision…

I’ve been thinking a lot about that childhood conversation lately. I bet you heard my statement and wished you could freeze time so you could keep me forever. Funny how the universe grants wishes with a twist of fate. I’ve been a permanent fixture in your household, but at quite a financial, physical, and emotional cost to you.

The Quiet Strength of a Caregiver

A caregiver’s work is tireless and thankless. You are always there, answering every call for help without fail. Even when you’ve just sat down and I know you want to stay there, you never complain if I need a snack, fresh water, medicine, or a hot pack. You’ve mastered the “Nikki handbook” so well you can anticipate my needs and be ready for nearly every circumstance. I know how much brain power that takes and how exhausting it gets when my condition throws you curveballs. You never stop trying, though.

You play through the pain—literally—pushing your aching body to do chores it’s no longer built for and staying awake when fatigue is making your eyes heavy. I’ve seen you care for me through illnesses and injuries when I know all you really wanted was someone to take care of you. You’ve rescheduled your own medical appointments when I was in a state of emergency, and when my neck is especially unbearable, you’ll offer to let me take your place at the acupuncture appointments I know you desperately look forward to (thankfully, I haven’t had to steal one yet). And it’s all taken a serious toll on your mental health. But you do it all willingly, frequently telling people you know my suffering is far worse than yours. Only you show me that level of consideration. 

How Your Caregiving Shaped the Life We Share

I have watched helplessly as you sacrificed your entire life to prolong and protect mine. You’ve stood by me through every surgery, hospitalization, and attempt to convince a new doctor I needed help. But as impressive as the critical moments sound, the bigger demonstration of strength and loyalty has been your daily devotion—making good on your promise never to leave me abandoned. You didn’t think twice about prioritizing my well-being over your financial security, so you now have none. Unlike many of your peers, you don’t get to take lavish trips around the world or own a summer home. Or own a home at all. Or even take modest vacations. Or spend days at the beach in the Ocean State! No, we rent an apartment and occasionally drive to Cape Cod or Mystic, Connecticut.

I thank God for your amazing network of friends. If something’s wrong with me, you’re all willing to cancel your already infrequent luncheons at a moment’s notice. I wish you didn’t have to be so accommodating. 

You get frustrated, but not with me. I am so grateful for that. You’re instead exasperated with life and with those who don’t see or understand what you’re going through. This letter is my way of finally reassuring you I see it all. I understand your struggles and frustrations. I appreciate everything you do, and I love you so much for it.

And yes, I still want to live with you forever.

Lots of love,

Nikki

About the author:

Nikki joined the state’s RIte@Home Shared Living program, administered by Careforth, in 2019 with her mother and caregiver, Jan. Since she was a child, Nikki has navigated misdiagnoses, complicated surgeries, and challenging symptoms because of her hydrocephalus and Chiari malformation type I diagnosis. Learn more about Nikki and Jan’s story, their advocacy efforts, and how they found support here.