There are things caregivers think that they are probably never going to say out loud. I love you, but I am exhausted. I want to be here for you, but sometimes I want to run away. I cannot imagine losing you, and I also cannot imagine doing this forever. Those thoughts sound terrible when you pull them out of the privacy of someone’s mind and put them on paper, which may be exactly why we rarely do. The person needing care is sick, injured, aging or dying. How dare the healthy person complain? How can you need a break from something the person you love cannot take a break from? And yet I suspect those thoughts are happening in bedrooms, hospital rooms and dark kitchens at three in the morning everywhere.
I have spent a surprising amount of my life around caregiving. At eighteen, I was the person being cared for. A spinal cord injury took me from being a brand new college student who had just tasted independence to needing my parents for some of the most private parts of being alive. They helped me bathe, eat, use the bathroom and move a body I could no longer move the way I once had. They stayed awake rubbing my legs when the spasms would not stop. I was frustrated, angry and, quite frankly, probably a terrible patient. I had just gotten my freedom and suddenly needed my parents for almost everything, while they had only recently begun experiencing what life might look like after raising their youngest child. I also watched what taking care of me did to them.
Years later, when I founded Awakenings Health Institute, I saw caregiving from another side. Very few people with significant spinal cord injuries, brain injuries or strokes came through our doors alone. Someone else came too. Sometimes it was a spouse, sometimes a parent or child, sometimes a paid caregiver. The diagnosis belonged medically to one person, but its impact could spread through an entire family. I watched some families grow closer through it. I watched others slowly come apart.
So I talked to caregivers constantly about taking care of themselves. I encouraged them to rest, move their own bodies, accept help and preserve some small part of life that still belonged to them. I knew what could happen when they did not, because I had watched it happen. I also knew how ridiculous that advice could sound when someone was thinking, Wonderful. Who exactly is going to take over while I go do all of that?
Then I became a mother and understood that contradiction in a very different way. I want to be careful here because I am not comparing raising healthy children with caring for a dying parent, a profoundly disabled child or a seriously ill spouse. I have never carried those particular responsibilities, thank God, nor would I ever pretend to understand their grief or weight. Motherhood simply gave me my own experience of profoundly loving someone, being deeply needed and learning how difficult it can be to separate another person’s needs from your own.
I loved staying home with my children. I mean, I honestly and truly loved it. I loved being there for everything. I even enjoyed taking three little kids to the grocery store, which probably makes some parents question my judgment. I have known mothers who seemed like they would rather chew off their own arm than spend every waking hour home with small children, and I say that without judgment. We are simply wired differently and that’s okay.
I also fantasized about going to the hospital. During all of my pregnancies, I was considered advanced maternal age, so I had to go in periodically for monitoring. I would arrange childcare, drive to the hospital, climb into clean sheets in a dim room and lie there listening to the steady rhythm of the monitor. Nobody needed food. Nobody needed changing. Nobody needed me to do anything other than relax in a very quiet room. It was heaven. I remember lying there thinking, This is practically a vacation. I think you can adore your children and still find forty five minutes alone in a hospital bed glorious. That taught me something I wish we gave people more permission to admit. Wanting relief from caregiving is not necessarily wanting relief from the person you love.
Around that same period, I overheard three older women talking in the gym locker room. One had recently returned after moving away to care for an aging parent who had since died. I do not remember her exact words, but I remember the point. People talked about raising children all the time, she said, but almost nobody talked about what it meant to care for a parent. She had stepped away from her own life to do it, and now she was back trying to figure out what came next.
At the time, I was surrounded by babies, naps and an incredible amount of cooking. Taking care of aging parents felt like another universe. I remember thinking, Wow. That is an entire part of life nobody tells you about. It does not feel far away anymore.
My parents and my in-laws are all around eighty or older. Both sets have spent decades building lives far from ours. My husband and I have businesses, and our daughters have schools, friends and lives here. I have told all four parents for years that when they need us, I want them near us and I want to help care for them. I mean it. I also have absolutely no idea how that works.
If one of them suddenly needs significant care, who moves? Do we uproot someone in their eighties from the home and community they have known for decades? Do we uproot our children instead? Does one of us stop working? What happens financially? Can professional help fill the gaps, and what happens if nobody can afford enough of it? Sometimes caregiving does not offer a beautiful solution. Sometimes it offers competing losses.
Which brings me to the first question I think caregivers quietly ask themselves: How much of myself am I allowed to keep? When someone you love genuinely needs you, what parts of your own life are you still allowed to protect? Your work? Your health? Your marriage? A Saturday afternoon? A trip? A future you had already begun building?
We praise sacrifice in caregivers, and for good reason. There can be extraordinary love in showing up over and over when another human being cannot manage without you. I have also watched what happens when caring for someone becomes so consuming that very little remains outside of the role.
That leads directly to the second question: What if I love you deeply and I still do not want this life? That may be the sentence people are most afraid to say. A woman can adore her husband and hate what illness has done to their marriage. A daughter can love her mother and resent how completely her mother’s needs have taken over her life. A parent can love a child beyond anything language can explain and still grieve the future they imagined for both of them. I think we become frightened when resentment appears beside love because we assume the resentment must expose some ugly truth and the love was somehow less real. What if both are true? Maybe resentment is sometimes simply the part of a person quietly saying, I am still here too.
Spousal caregiving makes this especially complicated for me because I know what extreme physical dependence feels like from the receiving side. I have needed someone to bathe me, dress me, help me eat and take me to the bathroom. If I ever needed that level of care again and another option existed, I would personally want someone other than my husband doing as much of it as possible.
That is not a judgment on couples who care for one another that way. I imagine many find tenderness and intimacy inside it that I cannot understand from the outside. I simply know that I would want to protect something of husband and wife underneath patient and caregiver. I think we should be allowed to wonder about that too.
Then there is the third question, and maybe the one that stays with me most: Who am I when this is over? I keep thinking about that woman in the locker room. She had moved away to care for her parent. Her parent died. She came home. But came home to what?
Imagine years of your brain tracking appointments, your body knowing medication times and part of your attention always asking, Are they okay? Friendships may have faded. Work may have disappeared. Leaving the house may have required planning every single time. Then the caregiving ends. People lovingly tell you, “Now you can get back to your life.” What life?
And what happens if, along with enormous grief, there is relief? What if sleeping through the night feels wonderful? What if you enjoy making a plan without arranging someone else’s care first? What if you miss the person desperately and still feel free? Does relief make the love less real? I do not think it does. Maybe relief simply tells us how heavy something was.
That may be why I am becoming less interested in giving caregivers advice. “Take care of yourself” does not solve much when your mother cannot safely be left alone. “Ask for help” is not useful when help costs money you do not have. “Set boundaries” becomes complicated when the person on the other side is your spouse, your parent or your child.
Maybe caregivers need something before advice. Permission. Permission to say, I love you and this is hard. Permission to be exhausted without feeling ungrateful. Permission to resent what caregiving has taken without resenting the person who needs the care. Permission to feel relief without rewriting the love that came before it.
Maybe one of the most unfair things we ask of caregivers is that their emotional experience remain as pure as the love that made them step forward in the first place. Human beings do not work that way. Love can sit beside anger. Devotion can live beside exhaustion. Grief can contain relief. We can desperately want someone to stay and still wonder how much longer we can live the way we are living.
Maybe the permission caregivers need is permission to remain a whole human being while loving another one. Someone whose life still matters too. And maybe underneath every version of caregiving there is one question we should be much less afraid to say out loud:
How do I give you what you need without giving away all of me?
I do not know that there is one answer, but I absolutely believe we should be allowed to ask the question.