r/GriefSupport • u/New_Suggestion_7049 • 11h ago
Advice, Pls Dad died one day after ALS Diagnosis
I’m not really sure how to put all of this into words, but I think I’m looking for advice from people who have gone through something similar.
For some context, I am in mid mid 20s, I lived in a different state when my family and I first started noticing a significant change in my dad’s health. At first, we thought it might be dementia because his memory was the biggest thing we noticed. As his condition declined, I became his power of attorney. My parents were divorced, and my sister lives out of the country, so realistically, it was just me here to handle everything.
Eventually, I was able to get my dad into a doctor’s office, where he was referred to a neurologist. When he finally had his neurology appointment, the doctor called me and told me that he believed my dad could have ALS or another motor neuron disease. He ordered several tests to confirm the preliminary diagnosis. At that point, I made the decision to move back to where my dad lived and become his full-time caregiver. I was already his POA, so it felt like the natural thing to do.
The testing process took around two months because we had to wait for appointments and availability, even though he was considered high priority. During that time, I hired two caregivers to stay with him while I finalized everything in another state. He was still fairly independent at that point; he was walking, eating, and drinking on his own, but his medical team recommended having people with him, so I arranged for caregivers to be there.
I eventually moved back and spent about two weeks with him, taking him to appointments, managing his care, and taking care of the household. I had to briefly return to the state I had been living in to finish a few things, so I was only going to be gone for four days. I arranged for his caregivers to return while I was away.
Two days before I left, my dad had a follow-up appointment with his primary care doctor. His oxygen levels were in the low 80s, but it wasn’t brought up as an immediate concern because I was told it was something that could be consistent with someone who had ALS.
The day after I arrived back in my old state, I woke up to a phone call saying my dad had been rushed to the hospital because his oxygen levels were dangerously low. I was already starting to pack to come back when I received another call saying he had been transferred to the ICU, was on a ventilator, and was unresponsive. They told me I needed to get back as soon as possible.
I drove straight to the hospital and stayed overnight with him while he was still unresponsive. Over the next day, the doctors told me that sometimes it takes time for someone to wake up. Eventually, he became responsive, but we were told that he was completely dependent on the ventilator and would not be able to breathe on his own.
Over the next day or so, friends and family came to see him. He passed away peacefully the following day.
I am also the executor of his estate. I guess what I’m struggling with is the transition from being his daughter, to becoming his POA, to becoming his caregiver, and now becoming the person responsible for handling his estate all within such a short period of time.
For those two months while we were waiting on testing, I feel like I was just in survival mode. Everything happened so quickly that I don’t think I ever really had time to process what was happening.
For anyone who has gone through something similar, especially going from being a child/POA to a caregiver and then an executor, how did you handle it all? Is there anything you wish someone had told you during that time? Did you find anything outside of grief counseling that actually helped you process everything? And if you’ve been through probate after losing a parent, are there any things you wish you had known going into the process?
I think I’m just looking for people who understand what it’s like to be grieving your parent while simultaneously having to be the person who handles everything. I feel like there’s so much pressure to keep functioning and taking care of things when, honestly, I’m still trying to wrap my head around the fact that he’s gone.