The first thought that crossed my mind when the doctors told me my severely schizophrenic uncle had passed, was: Thank God. There it is, in all its glorious selfishness, relief. After spending years growing increasingly concerned about his deterioration, and wondering how I would ever be able to keep looking after him later in life, I couldn’t help but feel relieved.
I was the closest thing he had to a daughter, and it seemed only natural that I would take over his care after his mother and sister, and honestly? I didn’t want that. I was old enough to understand his condition and the unspoken responsibility it entailed. I wasn’t even sure if I wanted children in the future, and I had found myself feeling tied down to a sixty-year-old man who required constant care. His death brought an answer, albeit heartbreaking, to all the fears I had been nursing ever since I was old enough to understand why he was so different from other adults.
After years of learning to navigate my role as a caregiver, I suddenly found myself in an unfamiliar, idle state. What do you do when there is no more care to give because the object of your care is no longer present? How do you come to terms with the ending of a unique dynamic you had come to identify yourself so closely with? This think-piece is a personal testimony of how I, like many others, found myself grappling with a double loss: the passing of a loved one and the subsequent end of my caregiving identity.
Often, in an attempt to broach the topic of mental illness, platforms are drawn to speak to the family and friends of those touched by mental illness, but are not themselves the ones living with mental illness. Top ten ways to look after yourself when living with a depressed partner, how to help your Autistic loved one, how to avoid the traps of codependence. All kinds of helpful resources on how to be a good caregiver, how to support your loved one throughout all the stages of their illness: the onset, the deterioration, the final stages, and it’s a good thing we’re addressing mental illness more than ever in mainstream media. This kind of media attention is important and shows tremendous progress in the mental health dialogue generally. I for one, look forward to learning more as we collectively tread the road of compassion and recovery. But now, I’m here wondering about the aftermath–when someone you love with a mental illness passes away.
Is grieving the life and death of a neurodivergent person different from grieving a neurotypical one? I believe it can be, on some level, even more difficult to fathom. There may be a confusion of roles, especially if you found yourself in a caregiving position. There may be lingering resentment and shame. You could be wracked with regret and guilt, or at peace in the knowledge that you’ve done your very best. You can feel relief, or feel nothing at all, and I’ll tell you what every decent individual with minimal insight into human nature will assert: it’s perfectly okay to feel the way you do. There is no right way to feel.
With that, there are a few things I would like to add that have been helpful in my experience. Perhaps you will relate to these words, and maybe they won’t describe you at all. My experience of grief is all I have to offer, and if it helps at least one of you find comfort amidst their grief, I will be grateful.
You’re not a monster for feeling relieved.
Sometimes, at my lowest, I made this dreadful wish. I had prayed to be relieved of the burden I perceived him to be, I had prayed for an end to my uncle’s suffering and ours. I can’t believe I’m writing this for others to see, but it’s the truth. I am not proud of it, but I’m not ashamed anymore, and neither should you if you’ve thought the same. We can’t control our thoughts and feelings. My sinister ruminations were not responsible for his demise, I hadn’t called it or anything of the sort. I had occasionally felt like any healthy, self-centered human being would when confronted with a potentially constraining situation. I don’t think anybody has enough patience and faith to be completely at ease with the prospect of looking after a sick person for the rest of their lives. I am learning to love myself with my contradictions and work on improving those outdated self-defense mechanisms. It’s not all or nothing, I am not all black or all white, and I can be a loving and patient person and put myself first. I can be giving and struggle to uphold personal boundaries. I can be committed and dread responsibility. Yes, you can do both at the same time, it’s possible to both accept and strive to grow.
I too felt both great sadness, and relief. I too accept that and resent that.
You did what you could with what you had.
Speaking of amending behaviors and working on oneself, I’d like to take the opportunity to dispel a toxic myth: knowledge and understanding don’t automatically translate into exemplary practice. It doesn’t matter how much you love someone, sometimes you’re going to react poorly. You may have harsh words, or ignore them, you may raise your voice at them or badmouth them. Doors may slam, feelings may be hurt, and these moments, the ones where you failed them, may come back and haunt you when they are gone. And you might despise yourself for acting so cruelly. I know I did.
There were times when I lost my temper because my uncle’s behavior felt inconvenient. In those moments I forgot everything about the symptoms of his illness, the knowledge amassed after years of studying psychopathology, all the helpful coping tips gleaned from my studies, online articles, my friends. In those moments I had nothing left but my frustration, and his lack of progress. I felt preoccupied living my own life and could not be bothered with interruptions.
I won’t lie and tell you that I have made my peace with it. I had to interrupt my writing several times because tears blurred my vision. Reminding myself to take a deep breath. Exhale. Hold yourself gently.
I am so sorry. I wish I had taught you how to use a keyboard. I wish I had been more patient with you. I really did my best, and it doesn’t feel enough. Because you deserve the kind of loving support they show in movie montages, and our time together was nothing like those movies. The reality is that I can be impatient and selfish sometimes, and I was not able to take care of you the way that I want to, now that you’re gone.
I've come to realize that so many of us are quick to point out flaws in our stories, and rarely give ourselves the grace and understanding we offer to others. Combatting this is hard, but it is important to remember the unsung achievements, all the moments you were helpful and caring. And before you dare think that this is the least anyone could expect, that this was your duty, your responsibility, or any other similarly dismissive declension, I want you to acknowledge that even if those things are true, it didn’t make things any less difficult. Praise yourself for the times you did show up, the times you did try to help, the moments you put their interest ahead of your own. I will say it again because it’s worth repeating: it’s not because you were expected to look after them, that you should not be appreciated for it. Next time you find yourself criticizing what you could have or should have done, try and look at the full picture. It’s only fair.
What now?
Perhaps you’ll find yourself grappling with an odd sense of emptiness as you move on with your life. Maybe you’ll feel like there is still more that you could have done, like you got away easy, or your debt wasn’t fully settled. It’s helpful to approach this ambiguous sentiment with an open mind and perhaps think of ways you can pay it forward. The skills you have built while looking after your loved ones, the empathy, the patience, the resilience, the courage you manifested in the face of uncertainty, these are all precious resources you can use to be of service to others. Sometimes your mere presence, coupled with the difficult experiences you have been through, allow you to support others in ways you are not aware of. You are surviving and growing through your pain, and this sends a powerful message of hope.
After all, dear reader, if you’re like me, you’ve played a unique leading role in the very intimate, sometimes unsettling, daily life of a person with a chronic mental illness. Even after the curtains close, you may still find yourself wandering backstage. This performance you had come to cherish and dread may have contributed to shaping your own self-image, and you may feel strangely destitute after it ends. Nobody is asking you to do more, but if you truly want to, you can contribute, at your own pace, to making the world they left behind a little warmer.
There are many things I did to celebrate his life and honor his memory. One thing I found particularly helpful was asking others to tell me more about his life, and the kind of person he used to be before his disorder completely took over. It felt like I was retrieving precious fragments of a forgotten story, and it felt good to know he had fully lived prior to the onset of his illness, even if I had never witnessed it myself. I volunteered for several weeks at a local geriatric center and spent time caring for people who reminded me of him. I reached out to the service workers, nurses, doctors who assisted him and helped make his life and ours more comfortable and thanked them for the difference they made. I bring him up in conversations today, when appropriate, and share my experience of living and caring for someone with a severe mental illness. These are all small actions but I truly believe they contribute to building a society that is more compassionate and inclusive. As for the days when the pain of his absence was too vivid, I wrote to him, talked to him out loud, sang the songs he used to love, I prayed for him, and I looked at old pictures.
Losing him is not a wound I expect to heal completely with time, and I want to thank you for allowing me to share our story with you. If anything, this is teaching me how incredibly resilient and compassionate we all can be. I hope you find the same solace I do when I remember to look at us beyond my own distorted expectations and silently bid farewell to a man who taught me so much about myself and my ability to love someone unconditionally, without ever having said anything to me at all.
