Dying at Home: The Untold Toll on the Living

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ide to die at home. But I don’t think it’s the right move for all scenarios when considering how emotionally devastating it can be for all of the people that will be able to continue their lives after their loved one has passed on.Hospitals and hospice facilities feel super safe to me because there are people, resources, equipment, and medications on standby. My Dad and I were the two people that were constantly by my mom’s side as she was going through the dying process, and there was shit that happened that left us frantically reaching for the phone to call a hospice nurse to the house. In a hospital though? All you have to do is press a button and- boom- a nurse could be there in a few short moments instead of an hour or more. I can only imagine how much more at ease we would have felt with doctors and nurses around us during those first seizures. Being in a sterile environment as opposed to at home is also something that would’ve placated my mind at the time. My Dad and I would’ve loved having the aid of a nurse with cleaning the bed, diaper changes, ostomy bag changes, and wound care. It also became a headache to keep track of my mom’s medications. I remember the two of us feeling so anxious about administering too much or too little pain killer and anti-seizure meds when she was no longer conscious. This dilemma is one that no one deserves.Am I bitter that my mom’s end-of-life wishes resulted in me taking care of her? No. I was happy to take care of her, and I rose to the occasion. But I do think about how different my mental state could be today if she opted to stay in the hospital and even accept more medical help. Qualified individuals who see seizures all the time could’ve treated her instead of me taking the brunt of them.If you’re reading this and you have a loved on

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e who is on the fence about dying in a facility, think about what your role may turn into in the event that they choose to pass away at their home. At home, would you end up having to be their full-time caregiver? Will you be able to create boundaries and take breaks while other family members step in for a shift? Think about how their decision may affect you in both the short-term and the long-term. Talk to your loved ones about it. Also think about the fact that the dying process can take a long time; from the day I was told my mom would have a few hours to live, she survived three more months.If you know you want to be by their side throughout their dying process but you’re uncomfortable with doing so at home, it can be helpful to tell them that you do care about their wishes, but that you would feel much more comfortable not having to go through this at home. This conversation may or may not go the way you want it to; it’s one I tried having with my mom. In the end, she was so persistent about wanting to be home that I had no choice but to honor her wishes, take her home, and love her until she died. The decision is that of each individual person.Even if our loved one’s decision might frustrate us and not make much sense in the moment, they do have a right to choose where they pass away. And if it feels right for them, we must find a way to get on their level and make it feel right for us, too, eventually. I’ll never deny how awful the whole thing was, however I feel satisfied that I could be instrumental in helping her feel loved and comfy.Thanks for reading my first article here on Medium! Stay tuned for more articles about death and grief, mental health, environmental sustainability, being a working musician, and more topics I like to nerd out about.</article></body>

Dying at Home: The Untold Toll on the Living

The world closed in around me, the phone to my ear as an oncologist informed me my mom might have just a few hours before her death.

But just as frightening as that prognosis: my mom wanted to come home from the emergency department, against the advice of the medical team.

I’m Michelle (23, she/her) and a few months ago I underwent the experience of having a parent die at home.

Days and nights morphed together throughout this process, and I’d often glare at my mom’s bony (but somehow living) body as she lay in her own bed, waiting for her next breath as I held mine.

I’ll be forever traumatized by my mom’s at-home death.

If I don’t need therapy and medication for the rest of my life, I’m convinced it’ll at least be a few years before I can function well again.

I have nightmares and tons of intrusive thoughts about the experience.

I think about the violent seizures that we couldn’t manage, the fluids I was constantly cleaning up, and the perpetual concern that something else would happen that would leave us in a helpless position.

I don’t believe my mom thought of the lasting impacts that this decision may have when she first acted on it.

Don’t get me wrong- I was able to benefit from having her home (while simultaneously being permanently damaged).

I didn’t have to wait for visiting hours to be with her, and there were no wires and tubes I had to climb through if I wanted to cuddle her or kiss her or hold her hand. I really get why people decide to die at home. But I don’t think it’s the right move for all scenarios when considering how emotionally devastating it can be for all of the people that will be able to continue their lives after their loved one has passed on.

Hospitals and hospice facilities feel super safe to me because there are people, resources, equipment, and medications on standby. My Dad and I were the two people that were constantly by my mom’s side as she was going through the dying process, and there was shit that happened that left us frantically reaching for the phone to call a hospice nurse to the house. In a hospital though? All you have to do is press a button and- boom- a nurse could be there in a few short moments instead of an hour or more. I can only imagine how much more at ease we would have felt with doctors and nurses around us during those first seizures. Being in a sterile environment as opposed to at home is also something that would’ve placated my mind at the time. My Dad and I would’ve loved having the aid of a nurse with cleaning the bed, diaper changes, ostomy bag changes, and wound care. It also became a headache to keep track of my mom’s medications. I remember the two of us feeling so anxious about administering too much or too little pain killer and anti-seizure meds when she was no longer conscious. This dilemma is one that no one deserves.

Am I bitter that my mom’s end-of-life wishes resulted in me taking care of her? No. I was happy to take care of her, and I rose to the occasion. But I do think about how different my mental state could be today if she opted to stay in the hospital and even accept more medical help. Qualified individuals who see seizures all the time could’ve treated her instead of me taking the brunt of them.

If you’re reading this and you have a loved one who is on the fence about dying in a facility, think about what your role may turn into in the event that they choose to pass away at their home. At home, would you end up having to be their full-time caregiver? Will you be able to create boundaries and take breaks while other family members step in for a shift? Think about how their decision may affect you in both the short-term and the long-term. Talk to your loved ones about it. Also think about the fact that the dying process can take a long time; from the day I was told my mom would have a few hours to live, she survived three more months.

If you know you want to be by their side throughout their dying process but you’re uncomfortable with doing so at home, it can be helpful to tell them that you do care about their wishes, but that you would feel much more comfortable not having to go through this at home. This conversation may or may not go the way you want it to; it’s one I tried having with my mom. In the end, she was so persistent about wanting to be home that I had no choice but to honor her wishes, take her home, and love her until she died. The decision is that of each individual person.

Even if our loved one’s decision might frustrate us and not make much sense in the moment, they do have a right to choose where they pass away. And if it feels right for them, we must find a way to get on their level and make it feel right for us, too, eventually. I’ll never deny how awful the whole thing was, however I feel satisfied that I could be instrumental in helping her feel loved and comfy.

Thanks for reading my first article here on Medium! Stay tuned for more articles about death and grief, mental health, environmental sustainability, being a working musician, and more topics I like to nerd out about.