When the Miracles Run Out

        Our family has been blessed with miracles for many years.

        Just looking at Robert’s run, he had a seizure while swimming when he was 16 years old and somehow survived after being in a coma for three days. He survived terrible falls (including one onto a lamp which burned his arm while he seized for god knows how long), concussions, an infection in the Deep Brain Stimulator when he was in a trial for it at UCSF, countless seizures and seizure clusters, two rounds of COVID pneumonia, a ridiculous amount of aspiration pneumonia, and, as recently as June, a severe case of pancreatitis brought on by gallstones.

Along with being the Bingo King he was the Comeback Kid.

Always pulling out a miracle.

When Richard had his own miracle of surviving a “widow maker” cardiac arrest, I started to feel a little guilty about our abundance of miracles. (Of course, if you know me, this comes as a surprise to absolutely no one.) I definitely got the guilt gene.

I loved the miracles though and was so grateful for each and every one. Logically, I knew that one day the miracles would run out. Robert has been so sick that doctors would pull me aside and solemnly tell me “I’m a little worried about him.” I told them that he always pulls through. I would worry too but would also allow myself to remember the miracles.

Robert always had one up his sleeve!

This last week, Robert seemed like himself. We went to his neurology appointment and his doctor and I talked about how amazing it was that the facility only reported one seizure last month! Yes, they could have missed some but they certainly weren’t missing 40+ a month like he was having when he lived with us just two years ago. Dr. Kennedy has worked with Robert for years, carefully adjusting his medications to see what might help without causing terrible side effects. He and I talked about how the Deep Brain Stimulator was helping along with the new medication Robert was on. Dr. Kennedy was even able to successfully slightly reduce some of the medications over the last several months, especially the ones that caused Robert’s ammonia level to skyrocket and make him sleepy.

Dr. Kennedy said eventually Robert could be moved from appointments every three months to six months! It was a great visit and it was not lost on me that this was Robert, again, being granted a miracle. The goal of zero seizures was no longer an impossible dream! It was within sight!

On Thursday, Robert enjoyed playing the card game of Kings in the Corner (his favorite). Pattae, his wonderful caregiver, shared that he won multiple times which was actually pretty typical.

Friday morning, though, I got a call that he was being sent to the Emergency Room. I was completely confused because I had seen him a couple times already that week and he was fine. Didn’t seem to be sick at all. I can usually tell when something is working on him but there was nothing.

    He was sent to the hospital unresponsive and by the time I got to the hospital, he was intubated and they were working to stabilize his blood pressure. They checked for a stroke, they checked to see if he was in status epilepticus, they ran so much bloodwork they ran out of good veins in his arms and had to use his leg.

    Robert quickly landed in the ICU, ended up with four “pressors” to get his blood pressure up and started with one broad spectrum antibiotic but ended up with four!

    He got so sick so quick. He was in septic shock.

    They finally figured out he again had pancreatitis. This time, it was “necrotizing pancreatitis” which in normal person’s lingo is “no bueno.”

    I followed along in his chart with the lab results and consulted Dr. Google or Chat GTP when I had a question. I looked up one of his liver enzymes which was in the thousands and was met with “you must have a typo.”

    Family and friends came up to see him, pray with him and say their goodbyes, just in case.

    Both nights he was in the ICU I was called to come to the hospital since things were not looking good. The second night, the doctor told me that he was not responding to the medications and his belly was swelling (surgery had been consulted and that was not an option because of how sick he was) and his organs were failing.

    Robert had remained mostly unresponsive the entire time and this was without sedatives. His body was just too tired to engage. I got one or two hand squeezes but not much more than that.

    We had to make the awful decision to remove his breathing tube.

    There was not going to be a miracle this time. Robert was not going to recover.

    I asked for the hospital pastor to pray with him before we did anything. I’m not really religious but Robert is and I wanted him to know he was going to heaven to see our parents and step-dad and Richard’s mom.

    Robert died quickly and peacefully with Richard and I by his side, holding his hands.

    I have spent today notifying service coordinators, his Day Program, the transportation company we use and others and gathering his belongings from his facility and seeing Pattae. With every phone call and text and every visit with the staff at the facility, we were met with tears and the same comments: We are heartbroken. Robert was special. Robert won over cranky residents. Robert will be deeply missed. Everyone loved Robert. Robert spread joy wherever he was.

    After hearing the same comments over and over, I realized Robert had one more miracle after all and that is all the hearts and souls he touched while he was here.

    Miss you, little brother.

 

Death, Grief and Dreams

September 21 was World Alzheimer’s Day.  Alzheimer’s was not something that affected my parents or grandparents or other relatives but it has affected dear friends, their relatives and my dear, delightful, vivacious first Mother-in-Law. 

In honor of this beautiful woman, who was affectionately called “Bib” growing up (and for some reason, I always called her that as well), I posted a picture of her on Twitter with the hashtag #Take1Moment. This is a campaign that Caregiver Action Network created to “recognize caregivers who support their loved ones with Alzheimer’s disease.”

Bib (Betty) - Her birthday celebration in 2012

While I didn’t provide care for Bib, I saw how the disease affected her children and grandchildren and others who loved her and were her caregivers.  It was devastating to see this woman who was quite the fireball become lost in this awful disease. Bib ran a daycare most of her life and had such a wonderful connection with the children, they would come visit her years later.  She was a “glamorous grandma” and even took up modeling well into her sixties – fulfilling a lifelong dream of hers. She loved her friends, her family and even her beer and Seven & Seven.  She always had a twinkle in her eye and delighted in being mischievous. 

She once confided in me that the secret to her delicious green salads, aside from home-grown tomatoes and various other garden vegetables, was a sprinkle of sugar over the entire salad. 

Yep, that explains why her salads tasted like no other I had ever tasted. 

Bib was on my mind on September 21 but the entire day I had a nagging feeling there was something else I was supposed to remember about that day.  I felt like I missed someone’s birthday.  We have a lot of September birthdays in our family so I ticked them off in my head: Robert, Richard, Rich, Caty, Mark – nope.  None on September 21. 

Only in my dreams that night did I realize what my brain was trying to tell me. 

Rach, Trish, Mom, Grandma - August 1999

I woke up with a horrible feeling the next morning.  I had dreamt of my mom.  It had been a very long time since I dreamt of her (or, as I like to view it, since she visited me).  My dream was terrible, though.  I found out that mom, who died in 1999, had been alive this entire time and I didn’t know it.  I was horrified to find out she was living with Alzheimer’s in a care facility and that I had not visited her in 16 years. Oh, I was sick to my stomach! 

Bib’s daughter told me where my mom was and I finally found her.  I visited her and saw her living in a run-down facility but laughing with the other residents while keeping a beautiful, white puppy by her side.  She looked at me and didn’t seem to recognize me but then said to the other resident, “That’s my daughter. Just joking!”

She pulled a Robert.  Sometimes Robert will know something but say he doesn’t and then say it in a joking way. 

I knew Mom recognized me when she “joked” about it.

The guilt I felt was overwhelming.  (Seriously? I feel enough guilt during my waking hours and now I have to feel it in my dreams too!!?) 

The dream was vivid and real and Mom looked just as she did 16 years ago. It was no surprise she was with a puppy (I was surprised it wasn’t her beloved Sassy, though!). 

I woke up feeling exhausted and out of sorts.  Why did I have this dream about Mom?  Of course I still miss her after 16 years and as I approach my 55^th birthday, I am struck more than ever by just how young 56 years old was when she died.

Mom, Trish, Rachel - Monterey 1994

The guilt crept back that morning.  When did mom die, exactly?  How do I not remember the exact date?  It was in September.  It was after Caty’s birthday. 

Was it really September 21?  Is that why I had this dream?  Did I jumble the World Alzheimer’s Day and the day she died into a gigantic, confused ball of emotion? 

I frantically searched my files for the date she died.  My files are still not quite completely organized since we moved so I was becoming quite exasperated.  Even without confirmation, I knew September 21 was the day she died.  I finally did find my files and confirmed September 21 was indeed the day she died.  The entire period of her illness has not been forgotten but the exact date she died was tucked too far away for some reason.  Diagnosed in July 1999 and gone two months later.

Much too quickly.  Much too soon.

Grief is an unpredictable, wild ride.  Grief will rear up from the background completely unexpectedly but memories of Mom, Bib and others will always have a place safely kept in my heart and surrounded by love. 

Details may fade, guilt lessons, grief will soften but love will always remain strong.

Thank you for the visit, Mom.  

Tara, Rich, Trish, Robert, Mom - 1973(?)