Grief and Gratitude: Losing My Husband and Mom

It was two years ago that my husband, Eric, started noticing some strange symptoms. He was feeling weak, and went to the doctor to see what was going on. His initial thought was he had a hernia, since he was having a bit of trouble breathing; though that did not explain the weakness in his arms or legs.

With persistence, several doctor visits, and then being hospitalized for a series of tests, he was diagnosed in June of 2017 with ALS - also known as Lou Gerhig's disease. At that appointment, his doctor literally gave him "three years to live." I remember thinking, "Oh! He'll make it to the twins' graduation!" As awful as the instantaneous thought was in response to the prognosis, it was something that anchored me in "hope."

But the disease worked much faster on my husband than either of us could have imagined and hope waxed and waned along the way. First, of course, we sought out "alternatives" - not just to potential healing modalities, but to the diagnosis itself! The process of seeking, learning, trying, and receiving was beyond anything we had experienced, as a couple or individuals - and we had been through a lot in our thirty years together!

By October of 2017, at Eric's second visit to the ALS Clinic, he was given a Bi-Pap machine to assist with his breathing, and his walking had become so compromised that a custom-designed wheelchair was ordered. By the time he received it in December, he was no longer able to walk, and I had to learn to transfer him from his lifting recliner chair to the wheelchair... and Eric was nearly a foot taller than me!

In fact, by December, his health and breathing had declined so rapidly, that we didn't think he was going to make it to his 55th birthday (on 12/21) or Christmas. Yet, he did, and something seemed to stabilize in him, but what or why was never determined. Perhaps it was his motivation to see our youngest daughters through basketball season?

Speaking of his wheelchair and basketball season, this was just one area of miracles and kindness we received throughout his illness! As his wheelchair was fully electric and weighed over 400 lbs., plus the fact that he needed a ventilator, it was no longer a matter of me "lift-transferring" him from the wheelchair into the car anymore. We needed a wheelchair accessible vehicle to transport him.

Winter grace:

• ​An acquaintance set up a fundraiser to help us rent a wheelchair accessible van - to which a total stranger contributed $500 cash.
• A friend posted online that our family needed a wheelchair accessible van to get to our daughters' first basketball game of the season - to which another total stranger not only volunteered to drive us, but took us to almost all their subsequent games.
• This van angel, who lost her own dad to ALS just before Christmas, dropped the vehicle off in our driveway the next month for us to use as needed, and kept it there for nearly six months. 

Thus, for the remaining of the basketball season we were able to get to almost all of their games! As well, having the van allowed us to attend Eric's mom's funeral in April, visit the Whole Earth Festival in May and get to a couple of important appointments. 

It was about a year ago, at one of our twins' games, however, that Eric noticed that my mom looked "yellow." My response to him was, "Everyone looks yellow! We're in a gym under fluorescent lights!" But at the next game, I noticed the yellow-orange tint, too, so I shared my concerns with her. She told me that she had gone to Urgent Care the weekend before, because her urine was brown and she wasn't feeling well, but they had sent her home without a diagnosis or any real testing.

Within a few weeks and various tests, her prognosis was also terminal. My mom was diagnosed with stage four pancreatic cancer, and only opted for chemo to slow down the aggressiveness and keep the cancer from getting to her bones. To say I was in shock... well, I'm still in shock and she's been gone six months now! 

As Eric's disease was progressing, my caregiving - which had become full time - had increased tenfold. I was no longer lift-transferring; instead using an electric Hoyer lift to get him from the hospital bed in our living room to his wheelchair, which - after basketball season ended - had become only an occasional transfer. Sitting in his wheelchair was painful no matter which position we adjusted him to, and Eric had a hard time breathing it in despite the ventilator.

His needs were so great that attending to my mom was nearly out of the question, although I was able to take her to a couple of her appointments. Thankfully, her decades-long friend had turned his two-week visit (which happened to be at the time of her diagnosis) into a long-term stay, which was a major blessing. As well, our twins spent a couple nights a week at her home as they finished up their sophomore year and attended basketball camp. Plus, a good friend became my mom's other chemo appointment driver and a huge medical advocate for her.

I jokingly have said that "Eric and my mom were so competitive that they even turned their deaths into a competition!" My mom, who had decided to give up chemo since it was causing so much nausea and discomfort, elected to go on to hospice on July 11, 2018. Her pain was so great that she ended up in the hospital that following Saturday, staying overnight and being sent home with more morphine - even though it had not been working!

On July 18, my husband decided to go onto hospice - his breathing had become so difficult that he had almost choked in the middle of the night, scaring both of us and prompting the decision. He was declining rapidly, so we had our older two come home to say their goodbyes.

That Sunday, my mom went back into the hospital, as her pain would not cease. Again, my dear friend attended her side, and continued to act as her advocate. My husband was down to his last days, and my mom was now being told she - too - was likely down to her last week or two. I couldn't believe it, nor could I leave my husband's side.

My husband died, and I will say a "peaceful death" with the support of a little morphine and a lot of love from family and friends, on July 24. The next day we had his viewing at our home. The day after that, my friend - still at my mom's side - called me and said it was time to come be with my mom.

My three daughters and I drove to the hospital, where I spent one night in a bed next to hers before bringing her to my home on July 27. She passed away - also peacefully - a week later on August 3.

The pain and shock are surreal at times. My mom and my husband were my foundations, my rocks. No one has ever understood me or loved me as they have, and I am grieving deeply at their loss. Our younger two daughters and I each have attended closed bereavement groups, which have helped us with some of the process, but we still have a long way to go. 

This story - clearly - is just a snippet of our past two years. Each excruciating day was long and cherished, yet it all went by so quickly. I've been in a fog through much of it, yet the moments of connection - of pure shared Love - are still clear. The heaviness has been more than I thought I could bear, but somehow I'm doing it. Crying helps. Friends help. Our children help. I couldn't have imagined losing my husband so early (he was just 55) let alone losing my young mom (she was only 68) the very same year, within weeks of one another. And, what's more incredible is how friends and strangers leaned in so tightly that we were held in Love and Generosity throughout the process.

So in addition to the gestures of kindnesses that I've already mentioned, I'd like to conclude this chronicle with the other amazing ways our family was supported during this immensely challenging time:

• At the start of the journey, numerous friends worked together to hold a BBQ Silent Auction Fundraiser in August of 2017, RAISING NEARLY $10,000. 
• ​Soon after, someone anonymously started PAYING OUR RENT EVERY MONTH, taking this huge burden from our shoulders.
• Someone anonymously paid to FILL UP our propane tank.
• SEVERAL families brought us wood, as this was our only form of heating our home, getting us through the winter.
• Friends from my husband's men's group - he belonged to the ManKind Project (MKP) - came a few times to help us work on projects at our house.
• Men we didn't know from MKP donated THOUSANDS of dollars to their "brother" in need.
• Friends gave us donations as great as $5000, $2700, and as little as $10, $5... EACH contributing to the whole, allowing our family to survive financially. 
• During my husband's final days, women friends came in shifts, committing to be with us to the end so we wouldn't have to be alone. 
• Dear friends helped me wash both Eric's and my mom's bodies with love and reverence.
• Eric was cremated FREE OF CHARGE, thanks to an acquaintance who owns a cremation/funeral service.
• Our friends donated their beautiful site for Eric's Celebration of Life service, where there was standing room only.
• Our larger circle handled EVERY DETAIL of Eric's service - which was beyond perfect.
• A friend took my girls and I shopping and bought us all outfits to wear for his service.
• Another friend spent HOURS of his time creating Eric's memorial video.
• SO MANY PEOPLE came - including a lady who I had never met but worked at my mom's credit union - to help me clean, haul, sell stuff and move out of my mom's apartment in September.
• My mom's boss continued to pay her as an employee until her death, even though she was unable to work for the last four or so months. He even made several donations after her death to contribute to her service.
• SO MANY have reached out in numerous ways to support our children - offering FREE services to help them, a place to stay each week (the twins used to stay at my mom's once a week, as it is very near their school), a car to drive, and so, so much more.
• Another acquaintance offered up their timeshare so we could enjoy the holidays in Mazatlan this Christmas - our first without my mom and Eric.
• To this day, I and my family have received numerous services/goods from chiropractic care, to supplements, to essential oils, to massages, to housecleaning, to pet care, to intuitive readings, to hair services, to books, to therapy sessions, to healing sessions, to gift cards/certificates, to needed medical items, to.... the list is VERY long!

Having lost my mom so soon after losing Eric, I have barely touched on that grief nor have I yet planned a service for her. She elected to donate her body to UC Davis School of Medicine, and in September they held a Memorial for all donors, which was a nice way to touch in and slightly process her death while honoring her in a small way. 

Yet, as an interfaith ordained minister who wrote her thesis on Sacred Ceremony, I want to truly honor her with a ceremony that's as eclectic and reverent as she deserves. In time, I shall. And, just as I helped compose for my husband a memorial video (which I share here) I would like to create a music video in her honor, too... but, again, that will happen in time.

And, I know I have many amazing people who are willing to support me in this next endeavor - or whatever I need, whenever I trust Life enough to reach out for help. All for which I am beyond grateful, in spite of the grief.