What Do You Pack When You’re Going To Help Your Mom Die?

That’s the question that’s been playing on a loop in my head the last few weeks.  

As I write this, I’m sitting at a table in an Airbnb in Oceanside, California, listening to my mother snore, with news of the LA fires airing in the background.  My mom is snoring because she’s in the process of dying, and the cocktail of Morphine and Lorazepam is keeping her asleep and comfortable as we wait for her organs to shut down and allow her to die peacefully.

To understand how, and why, we got here, we need to go back to another time and another place.  My Mom, Sheila, who is now 87, was a suburban housewife living in Morton Grove, Illinois, a quaint and quiet suburb north of Chicago.  I am the eldest son, and also the favorite, which my mom never really tried to hide, much to the chagrin of my brother as well as me.  

My mom’s parents lived about 15 minutes away from us, and I think we saw them almost every day during my childhood. My “Grandma and Papa” were wonderful people loved by everyone and they were very close to my mom.  My best memories as a child usually involve my family getting together with my grandparents and my aunt, uncle and my cousins.  The joy and love that I found with my grandparents, and the larger family helped to offset some of the tension within my immediate family.

But something started to happen to my grandma in the early 1980s.  At first, it was forgetting names or places.  “Oh, I’m such a dummy!” I can remember her saying, and of course we’d always minimize it by saying “we all forget things”.  But as time progressed, her memory got worse, and forgetting names soon became forgetting where she was going, or what she was about to do.  Eventually the memory loss and confusion led to the diagnosis nobody wanted to hear, but we all suspected: Alzheimer’s disease.

Over the many years that would follow, we all got to witness first-hand the vicious brutality of this disease. It not only robs your memory and speech, but every facet of what it means to be a human being.  I don’t recall exactly how long the disease took before it eventually killed her, but I know it was close to a decade.  Years and years of watching a woman we all love deteriorate day by day, week by week, year by year until she was rendered a mute skin-covered skeleton laying in a bed in an awful nursing home moaning as if what little soul she had left was saying “please just make this end!”  I remember conversations with my brother about which one of us should go back and hold the pillow over her head so we could end her misery.

I know my cousins had similar conversations, and I know my mom, my dad, my aunt and my uncle all must have prayed for her suffering – and theirs – to end.  My grandfather, my Papa and my hero, stayed with her every day, watching the woman he loved, the woman he built a life in America with, wither away to nothing.  I don’t think he ever complained, that wasn’t his style, but I know it was tearing him apart.  He developed Alzheimer’s himself, but his aggressive prostate cancer got him before Alzheimer’s destroyed the fabric of his being. He ended up dying before my grandmother.  She mercifully died about a year later, coincidentally on her birthday.   I know Papa’s death was listed as prostate cancer, but I attribute his demise to watching his beloved wife suffer day after day after torturous day.

I was one of the lucky ones in my family, as I was away at college for the first part of the disease and living in LA pursuing a career in television during most of the really bad years.  My visits home were typically during the summer breaks or holiday times.  But my mom had a front row seat and season tickets.  Her near daily ritual involved a visit to the nursing home where she witnessed the devastating impact of Alzheimer’s and how it destroyed her mother, as well as the corollary damage it inflicted on her father.  The toll it took on her lasted to this very day, as she now lays in a hospital bed, in this Airbnb, refusing to let that dreaded disease eat away at her brain and body any further.

Yes, despite everything my mom did to avoid the thing she feared the most, life’s cruelty caught up with her, and she was officially diagnosed with Alzheimer’s about three years ago.  But unlike what happened to my grandmother, my mother was determined to not wither away and suffer, becoming a helpless bag of brittle bones.  Her pleas to avoid that outcome began 40 years ago at my grandmother’s bedside, “never let me get like that” she would say repeatedly to me and my brother.  

That refrain continued after my grandmother died, and throughout my mom’s life.  She enrolled in Alzheimer’s studies to help researchers learn more as she suspected and feared that the hereditary nature of the disease would eventually get her.  She would send my brother and I literature about dying with dignity and various programs that would help her avoid suffering the awful fate that my grandmother did.

And then, as she entered her early eighties, the signs started to appear.  Names would slip her mind and the all too familiar refrain of “Oh, I’m such a dummy!”  “No Mom, we all forget things” began.  

After a couple of episodes where she wandered to a place where she didn’t know where she was or how she got there, she was encouraged, then pressured, into giving up her car.  She gave it to my youngest daughter, and her youngest granddaughter, Brooke, and it broke her heart to let that car go.  That was the real signal that her independence was gone, and she was now an official victim of Alzheimer’s destructive power.

Most days she was functional, albeit with occasional bouts of confusion, but she still had many more good moments than bad ones.  

After my dad retired my parents moved from Chicago to a lovely 55+ village in Oceanside, California.  The move was designed to be closer to me and my growing family, but also to enjoy their golden years in a better climate.  Unfortunately, my dad didn’t get to enjoy much of it as he died within a year of moving there at the age of 63.

A few years after my father passed away, my mom met a man who would become the ‘love of her life’, Gene.  Gene was a widower, and the two of them hit it off immediately.  They traveled the world and spent every day together, but they also agreed that there would be “no m’s – no marriages, no move-ins”,  

They kept that promise for 15 wonderful years while living in separate homes in their retirement village, and as the Alzheimer’s hit my mom and they migrated across the street into the independent living facility that my mom lived in until just a few days ago.

At Ocean Hills Independent living they both made friends quickly.  They had parties, and outings, and happy hours and for the most part, even with her diminished capacity, she was able to enjoy her days.  But she knew what lied ahead and wanted no part of it.  I was urged to find a solution and I began to look at options, but she was in the early stages, and I believed I had some time to figure out how to help her avoid the worst part of this disease. 

Despite the various literature my mom had sent over the years, I had not discovered any realistic end of life options, despite living in California, one of the more progressive states.  There is Medical Aid in Dying that is legal, but that only applies to people with terminal illnesses with a prognosis of 6 months or less.  As Alzheimer’s can torture its patients for years, my mom did not qualify for that option.  My brother, who was adamant about ‘honoring our mother’s wishes’ lived in Chicago and was dealing with his own health issues, so he was limited to doing research.  

I live 2 hours (on a good traffic day) north of my mom in Burbank and visit when I can, but my primary focus was on making sure her current life was as positive and pleasant as it could be.  I knew I needed to deal with the end of her life, but as long as there was quality in her life, I was going to do what I could to help her maximize the time she had.

For the most part, the early part of the disease was relatively gentle on her, and while the short-term memory came in and out like a faulty light switch, the long-term memory remained in-tact, especially the memory of what this disease did to her mother.  My mom was becoming more consumed with avoiding the inevitable, than enjoying the present.

Gene was a few years older than my mom, but as sharp as anyone half his age.  He walked every morning and ate his “Gene salad” every day.  Gene was about to turn 90 in March of 2023 and my mom wanted to throw him a big 90^th birthday party.  She was limited in what she could do both mentally and physically, but she played the role of ringleader as her friends, particularly Marcia and Arline put all the details together.  Gene’s family came in, I came down as did other members of my family, and many, many friends came to celebrate.  It was a wonderful party and a triumphant moment for my mother.  Gene was so appreciative of her efforts and my mom was so thrilled it all came together.

Apparently, she also viewed that day, and that party, as her own personal ‘finish line’.  About a month later Gene went to pick her up for their noon lunch to find her passed out and unresponsive.  He called 9-1-1 and the paramedics came to take her to the hospital.  He called me and I immediately jumped in the car and headed down.

My mom had been saving up her sleeping pills and had decided it was time to take matters into her own hands.  There were enough pills to leave her comatose for a few days, but not enough to do the job she intended.  Gene was devastated.  My brother was angry.  I can’t even explain my emotions, and honestly, I’m not sure I’ve fully processed it yet.  While she was recovering in the hospital, I learned that she also had a UTI.  I’ve since learned that UTI’s can trigger depression and suicidal thoughts, especially with dementia and Alzheimer’s patients.  Was her suicide attempt the result of the UTI or was this a planned, calculated move?  Unfortunately, I’ll never know, as the trauma of the event seemed to kick the Alzheimer’s progression into overdrive. She got some “happy pills” and counseling about all she had to live for, and when she returned to her apartment at Ocean Hills, she received a hero’s welcome.  She kept telling me, “I don’t know why I did that. I love everyone here.  This is such a wonderful place.”

The post-suicidal glow lasted for a while, but the damage had been done.  Gene was overwhelmed with taking care of her and was also in his own battle with Father Time.  It was time to start getting my mom some assistance. I started with caregivers just 3 hours a day in the mornings.  They’d help get my mom ready for the day and give Gene a few hours alone to take care of his personal business.  

That routine worked for a few months, but my mom’s decline was accelerating, and changes needed to be made.  Gene was beginning to have more and more age-related issues and lamented the fact that his family lived far away from him.  Gene also had 2 sons, one who still lived in New Jersey, where Gene was originally from, and another who was living near Seattle.  Gene, like my mom, also wanted to prepare for his eventual demise, but his plan involved being near his family, so they could help take care of him when he could no longer take care of himself.  He also lamented the fact that he could no longer take care of my mom.

We tried moving my mom into assisted living, but also kept caregivers as she was now getting attached to the wonderful Tasha.  My mom hated being in assisted living, and every chance she had she’d have Gene escort her back to the adjacent independent living building.

So, we moved her back to independent living and increased the hours of her caregivers.  Gene meanwhile had a health scare that sent him to the emergency room.  That was the final warning signal for him, and he made the difficult decision to leave my mom, all his friends, the beautiful San Diego weather and move to New Jersey to be near his son, daughter-in-law and grandsons.

That decision was devastating to my mom, and depression joined her Alzheimer’s in an all-out assault.  Luckily, we found an incredible trio of caregivers – Tasha, was her primary and was with her mornings and nights Monday-Friday.  Kathy (or Shirley when my mom forgot her name) had weekends until around 2pm and Shorty handled weekend nights and most weekday afternoons.  I will be forever grateful to those 3 women for the way the cared for my mom.

But despite how much she loved those 3 women and all her wonderful friends, this was not the life my mom wanted, and there was only one direction she was headed.  She didn’t qualify for medical aid in dying as there was no ‘expiration date’ on the Alzheimer’s label.  It seemed, for a while, that my best, and only option was to take her to Switzerland.  We found Dignitas, an organization that will work with people from other countries to help them fulfill their wish to die. They accept Alzheimer’s and dementia as valid reasons.  But there are many hurdles to overcome.  We wrote her mission statement and her life plan.  I transferred money to become a member and to begin the submission process.  I got notes from two doctors with her diagnosis.  But I needed a neurologist or psychologist to perform a full analysis and conclude that she was capable of making her own decision to end her life.

She had been under the care of a neurologist, so I reached out to her office for the requested letter.  Days and weeks would go by with no answers.  I would get their notes, which I would send to Dignitas, but that wasn’t good enough.  I needed an official letter that clearly stated she had the cognitive ability to make this decision.  I resisted telling them the reason for the letter, as I feared they may not support our intentions.  I was told the doctor would not write the letter unless she knew who it was for.  Unfortunately, my instincts were right and when she learned of the purpose she refused to write the letter. “She got into the medical field to help save lives, not end them.” I was told. 

Meanwhile, my mom continued to slip.  The window for her to clearly and coherently express her wishes and desires was closing.  Could I find another doctor in time and salvage the Switzerland option?  If I did, could I realistically get her there, as she could now barely walk?  And, to be honest, could I handle the burden of taking my mom halfway around the world to end her life?  

I was at my wit’s end.  I needed to be responsible for her care but also find a way to honor her wishes and not let her suffer for years.  I felt sad, angry, frustrated and alone. With Gene gone, I was my mom’s everything – and my visits, often with one of her granddaughters, were becoming her only reason for living.  

I shared my frustration with a good friend of mine, Matt Krimmer, who’s also a lawyer and had been helping me with some of the Dignitas paperwork, as well as helping me understand what was legal regarding my mom.  He also lived about 15 minutes from her and was someone I could visit on occasion when I visited my mom.  He sent me links to a few organizations that he thought might be able to help me.

One caught my attention – Empowered Endings run by a Dr. Bob Uslander.  That name rang a bell.  I read up on them, and sure enough their mission aligned with what I was trying to help my mom do.  And then it dawned on me – I know, or at least knew Bob Uslander.  I believed he was my friend in 2^nd grade, when I lived in Skokie, Illinois.  My family moved to the aforementioned Morton Grove when I was in 3^rd grade, thus ending my 2^nd grade friendships.  Could this be the same Bob Uslander?

Sure enough, it was. Could this be the positive twist of fate I had been looking for?  A doctor who I was friends with 55 years ago, now lives and works near my mom helping people seeking end of life options!  I reached out to his office and arranged a phone call with him.   He went over the options, much of which I already knew about.  It was starting to feel like another dead-end when he brought up one more legal option – VSED.  Voluntary Stopping Eating and Drinking.  That sounded like torture, and knowing my mom’s appetite and increasingly limited capacity to remember things it seemed like an impossible option.  But as Bob explained it, it began to not only sound feasible, but actually very humane, and at this point, our only realistic option.

His suggestion was to rent a nice place for the family to gather and bring in hospice and nursing care.  With this support, and medications that would be available to keep my mom comfortable, the process of dying would be tolerable, if not pleasant.  I explained the option to my mom, and she wanted to explore it.  We then met with Bob together.  For her to be eligible for his support, she would need to demonstrate to him, as well as a psychiatrist or similar expert, that this was what she wanted and that she was capable of making an informed medical decision like this.  It was very important that it was clear that this was her decision, and she had the ability to make the decision and understand the consequences.

She met with Dr. Bob and he felt that she was mentally competent to make the decision, so the next step was to get a meeting with a psychiatrist.  He gave me the name of a guy he knew in the community, and it took me a couple months to get an appointment.  A month after the appointment the psychiatrist concluded that he couldn’t conclude anything.  Three months wasted, and back to square one.  I could feel the window closing on my mom’s ability to articulate her wishes.  I stressed the urgency to Dr. Bob and he found a psychiatric nurse practitioner to meet with my mom.  This time she came to my mom’s apartment, and I joined them, in order to create a more comfortable environment for the session.  My mom was very clear that she didn’t want to live like this anymore.  I shared with the doctor the letters we had written with my mom as part of the Dignitas process.  As the session came to a close, the doctor explained to me that she felt confident that my mom knew what she wanted, understood what it would entail, and understood that it was optional

Victory at last.  This was the final hurdle; we can now move to the planning phase.  As I drove back to Burbank that evening reality sank in.  The ‘victory’ I had achieved that day, meant the path was cleared for my mom to die.  Throughout the two-hour drive home, a million thoughts flooded my brain.  I allowed myself to have a good cry.  I listened to what would become my anthem for the next few months – Jelly Roll’s “I Am Not Okay”, and I contemplated what lied ahead.  I obsessed over the million details I’d have to figure out.  And then I got stuck on one thought – “what do I pack when I’m going to help my mother die?”

The holidays were approaching and my wife, Michelle and my daughters, Ryan, Brooke and I were planning to go to Virginia to celebrate my granddaughter Gemma’s first Christmas with her, and Jeremy (my son) and Taylor (my daughter-in-law).  We decided to wait until after the holidays to begin the process of VSED and settled on a date of Friday, January 10^th.  I figured that it would allow us to get back from Virginia and have a few nice visits with her and then allow relatives to visit over the weekend of the 11^th before she would begin to fade out.  I certainly never imagined it would be the same week that LA would suffer through the most apocalyptic fire disaster ever.  Fortunately, our house was spared from the fires, and we were able to stick to the plan.

The week prior was among the most difficult of my life.  As a tv producer, my job is to make sure all details are in place, all contingencies thought of prior to shooting, all ‘what ifs’ contemplated.  With just 2 days to go, I had a million questions racing through my head.  That combined with the constant worry about the fires, worrying about friends, false evacuation alerts, etc., pushed me to my brink. I was counseled by Dr. Bob to be discreet about what we were doing.  “Just say you’re taking your mom on a family vacation.”  He assured us that what we were about to do was 100% legal (and my friend Matt Krimmer confirmed that for me), but that some people have issues with what we’re doing, and he didn’t want anyone causing problems for us.  It made sense, and as much as I wanted to tell people, I shared as little information with her friends and the other people involved in her care as possible.  I formed a small circle of trust – my family, my brother, Tasha and my cousin Cheryl and her husband Tom, who would also join me for the journey.

I wanted to tell Gene, but I believed it would be better to parcel out the information slowly over time.  No need to ruin his holidays or give him time to agonize over her impending demise.  Also, I knew from our many conversations that he opposed her choosing death, and that he would likely try to talk her out of it.  I tried to prepare him by letting him know that I was not only taking her for a vacation, but that I was going to try hospice care, as she was declining rapidly and that returning to independent living was not a long-term viable option.  All of that was true, and in fact in the past couple months I was advised by the building that I needed to start looking for alternative solutions to Independent Living.

Tuesday night the winds hit with a ferocity I had never experienced in my nearly 40 years of living in the LA area.  We lost power around 7:30pm so our ability to track the storm and its impact was limited.  By Wednesday morning, our power returned, but LA was already a disaster. I was scheduled to leave home to begin the process in 2 days.  I had yet to hear from the hospice company, nor did I have an address for the Airbnb I had secured months ago.  My anxiety was at a 10 but seeing how much worse things were for so many people forced me to maintain some perspective. I reached out to Dr. Bob and his “grief doula” Lori to express my concerns and frustrations.  By noon on Thursday hospice had met with my mom (and me via phone) and I finally felt like the plan was in place.

Brooke and I would drive down on Friday and take her to lunch for her final meal.  Then Tasha would help us move into the Airbnb and we’d settle in.  Dr. Bob would visit Saturday morning, and the 24-hour nursing would begin on Saturday at 11am.  Hospice would order everything we needed – the hospital bed, wheelchair, oxygen, a commode, and the medications.  The nurses would be specially trained and experienced for situations like this.  Cousin Cheryl and her husband Tom would come in from Vegas on Saturday (they’d stay in a hotel instead of the Airbnb) and Ryan would come down on Sunday.

Some of the anxiety subsided knowing the plan was in place, but many thoughts still haunted me. I questioned my own morality – was I really doing the right thing by supporting her wishes?  Is this the right timing, or should I have waited?  What if the Airbnb is a pit?  What if it smells?  Where will she sleep?  Is this going to be like torture?   How much should we eat for lunch?  Do we get dessert?  What do I tell people as we’re leaving Ocean Hills?  Do I let her say goodbye?  What if she tells people what’s happening?  How long will this last?  And, of course, what do I pack?

4am on Friday morning the cell phone fire alert went off telling us to evacuate.  We had a very frightening false alarm earlier on Thursday evening, and it was my guess/my hope that this too was a false alarm, but that’s not something to assume.  We had prepared the stuff we were going to take from the house already, so now it was just about figuring out if this threat was real or another mistake.  I laid in bed, trying to get a little more sleep while Michelle monitored the various news reports and fire apps.  After about an hour she concluded that it was another false alarm and returned to bed.  When morning rolled around it was time to go.  I not only loaded the car with my stuff and Brooke’s but many of the items that we would take with us if we needed to evacuate.  My car was filled with photo albums, as well as my signed Ernie Banks ball, my signed Walter Payton ball, and two notebooks of my favorite baseball cards.

It is now 11:33pm on Monday night and I sit at the dining room table typing this essay.  My mom is laying about 20 feet from me sleeping (and snoring) soundly as Englebert Humperdinck videos play on a loop on the tv via YouTube.  Brooke and Ryan have returned home, and Cheryl and Tom are at their hotel.  She is resting comfortably and within a couple of days she will be gone.  Calls have been made and goodbyes have been said, including a heart-wrenching call with Gene.  He still doesn’t know the full extent of the plan, but he realizes this was her desire and knows her time is almost up.  

The process has been smooth and rapid, and within 72 hours of her last meal she has gone from stealing all my grilled onions at Texas Roadhouse, to virtually unarousable.  The nurses, Alyssa and Stephanie have been wonderful, and they executed their compassionate care flawlessly.  Tasha has been a tremendous source of comfort for my mom as well as for me.  The hospice company, Topkare, has done everything as promised and with great professionalism and compassion.  And while Dr. Bob and Lori didn’t need to do much once the process started, I will be forever grateful to them for making us aware of this option and helping my mother put her plan in place.

Cherly and Tom have provided support, relief and many memories and I’m grateful they were a part of this.  My friends have been so supportive, particularly Matt and Tina (and their son Sam) who were there for me every step of the way, including giving me a nice break tonight to watch some of the Rams’ game at their house with them (and eat all the foods at Chili’s that Brooke wouldn’t let me eat a couple days earlier).  

And my family has been very supportive and loving – Michelle, Ryan, Brooke, Jeremy, Taylor and Gemma have all provided me with the love and support I needed to get through this, while also processing their own grief.  I am so grateful for them.

So now, I wait and listen to her snore and Englebert serenade her.  I still have a million questions swirling: Who else do I call?  Do I wait until she dies to call the rest of her contacts?  What do I do with her stuff?  What mortuary do I use?  Do I have a funeral?  Is so, when and who do I invite? But I will try my best to push those until tomorrow.  For now, I have peace knowing that all the big questions have been answered:

My mom will die peacefully and on her own terms, having been spared the terrible fate that awaited her had she not taken this step.

And I did the smart thing when it came to packing.  I asked my wife.  She said pack for 10 days, so I did.