Eight days ago I was awake and talking to my husband as he got dressed. My phone rang – it was the facility where mom was living. What I heard was she had fallen in her bathroom. The paramedics were administering CPR. She was on her way to the emergency room, could I meet them there?

I drove. I made brief, hands free phone call. My sister. It seemed as if the world had me on the to “find patience” road. I was within a mile of the hospital, my phone rang again – news brief- the ambulance has been rerouted to the other hospital. I arrived at the second hospital, there was a line at the desk. More waiting. My turn. They have no record of my mom, have a seat for 15 minutes. The receptionist will call me up as soon as she sees my mom’s name appear in the system. More waiting. I could not stay seated. I perched myself against a pillar in the direct line of sight of the receptionist. It felt like forever before she called me over. There was conversation and all I remember is her say “chaplain”.

The chaplain came out to get me and did not take me to my mom but to a small interior room. This was not going to just be another morning in the emergency room. The conversation instantly started with very specific end of life questions and requests. I texted my sister and told her to get on a plane. My husband arrived. My aunt (my mom’s younger sister) called. The neurosurgeon came in, after seeing my mom’s CT scan. I put my aunt on speaker phone instantly. She could hear him first hand and ask questions. Mom had suffered a major stroke. In the process, she threw up and subsequently aspirated. She would not bounce back.

All I wanted to do was see my mom.

We walked to the room where my mom was laying. She was intubated. She was just laying there. It was clear now, in case there had been any questions. I had already produced papers, signed other papers, and asked what the process was in order to allow family to arrive and say good bye. My priest arrived next. I was grateful.

What to do next? Make sure everyone can arrive and say goodbye. Kids in two other states – Wisconsin and Wyoming. Aunt on the West Coast and my sister and her family on the East Coast. Stepdad at his brother in laws funeral. Text my besties.

The next 24 hours, 48 hours into 72 hours were a blur. Time was no longer operation in a constraint that I recognized. Mom was moved to ICU for the remainder of her visit. This staff went above and beyond to make sure that she was comfortable and we all had anything we needed. Although they couldn’t give us the one thing we all “needed” – for mom to open her eyes and start telling us what could be done better!

The inevitable happened Wednesday afternoon. We had them unhook the ventilator. As my mom laid there, in a more “comfortable” position, she did not look at rest to me. My middle son sat next to her, touching her arm. Those who wanted to be there, were. Allowing everyone to say good bye in their own way and time.

That evening, my husband and I left the hospital and went directly to the funeral home. Our director had been in touch over the past two days. We pushed forward with the plan for a viewing and funeral in two days. Not the best timeframe for all families, but was the best decision for ours.

With my continued focus being that each person be able to grieve as they need, another challenge came to light during our meeting with the funeral director. My mom had been part of an ongoing Lewy Body study through the University of Florida. It has been her wish for years that her body be donated to science research. In this case, University of Florida only needed to harvest some brain tissue. It did not need to happen prior to the funeral mass, yeah. But, my stepdad’s request for an open casket was not possible with that plan. Open casket needed embalming and harvesting needed no embalming. So. There is that. In addition to scheduling with a third party company in a city two hours away…the logistics list continued.

Really a very difficult decision. The harvesting direction would also provide the family a definitive diagnosis of mom’s dementia. This has potential to change the direction and treatment of any possible issues for our children and their children. The future. However, the here and now is staring us in the face. Loved ones that still need to say goodbye and “need” to see mom.

Thursday morning I awoke to a text from the funeral director. She came up with a plan overnight. She asked that I not share it with anyone, in case she ran into any trouble during execution. She convinced the forensic pathologist to help with her plan. Friday morning in the early hours, mom was escorted two hours away for harvesting. Meanwhile, I finished pulling the outfit together and dropped it off at the funeral home. When mom made it back to the funeral home a team of four worked non stop for hours. The result left me speechless, and everyone else. She looked fantastic.

For anyone that knows me, I do not do viewings. No way around this one though. Her husband was able to see her and say good bye. Her grandchildren were able to do the same. It was such a better last image than the one in the hospital. As well – the harvesting happened.

The weekend continued as scheduled. Then one week after mom suffered her stroke, everyone was either back home or heading in their respective directions. Each grieving, now starting the process to heal.

I am home. A home that my mom will never walk through the front door again. The world is still spinning. I am numb. I continue to go through the daily routines. Still numb. Friends have been providing meals daily. At least the kiddos are all fed. I go to bed and I just lay there. If sleep comes, it is short lived. Still numb.

The one recurring thought for me is how can I pay respect to my mom’s memory. Write. Reach more people to help them through their journey. Awareness of research programs Or create programs… basically, DO SOMETHING.

I vow to complete the 36 posts that are written waiting for editing. I vow to write all of the posts shuffling in my head. If I can help one of you in this situation, than maybe I can help two or three. Stay tuned. If I have learned one thing Рthere are a whole bunch of us on this journey. We need to support each other and work toward an end to the disease(s). I have attached the link to the University of Florida -UF Neuromedicine Human Brain and Tissue Bank. Continue to educate yourself. (FYI no one could tell that mom had had tissue harvested.) 

I hope you will continue to follow me on this journey. If there is something I can do to help you, please let me know. Thank you for being here.


Those we love don’t go away, they fly beside us everyday!

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