“They’re On The Boat”

S.A.Leys Photo / http://www.SALeys.photo

Mom’s vascular dementia came on quickly – within two weeks of my Dad’s death.

It took us all a bit of time to adjust. Initially, it was hard even to figure out which end was up, and we just went day by day trying to figure everything out. After a few months, however, we settled into figuring out a routine that would work for us to get mom to all of her appointments while also keeping track of shopping and meal prep and everything that needed maintenance around the house.

It was a scrappy start, but we slowly got to the point where we could figure everything out. One of the biggest (and probably the most heart-wrenching) challenges was mom realizing that her memory was going, and then trying to navigate that with her. Eventually, we settled on the idea that “this is what happens when you get old” and not calling it something more clinical that no one was ready to hear.

It was the “elephant in the middle of the room” that we just referred to as “it’s what happens when you get old” instead of “vascular dementia.”

One day mom dropped a full glass of Merlot on the white carpet next to her chair. When it happened, she was overwhelmed, and so we had her move to the couch so we could move the chair and clean the area around it quickly. She then forgot about it.

A few days went by, and then one morning, she sat with her coffee and read the paper. As she reached for her coffee, she noticed the faint stain (which my brother and I had unsuccessfully tried to clean multiple times).
“What’s this?” she asked. “Ah, I was klutzy,” I said. “Susan Ann!” – her response. It was a lot better to take responsibility for the spill than it was to see the immensely sad look on her face that accompanied her realization that her memory was fading very fast.

I don’t know that you ever realize how intense caregiving is when you’re “in it” – only when it’s behind you, and you have time to reflect and adjust and yes, grieve and remember. For the most part, I am incredibly grateful for the time we had together. It was nice to step off the treadmill of working like a nut and calling Mom and Dad every few days to check how things were going to spending time with them in person. We enjoyed being together even if a huge chunk of that time involved driving to appointments, buying groceries, or meeting with healthcare providers and the hospice team.

Whenever we fell into the “doughnut hole” with her medications, we talked about the doctors that she didn’t want to see anymore and the medications she didn’t want to take because of how they made her feel.

Thankfully, the doctor who ended up treating her was the one she loved the most. A very compassionate man who agreed to care for her while we remained in their home – helping us and supporting us through each difficult decision as it arrived.

We laughed a lot, thoroughly enjoyed going on picnics in our golf cart, and loved watching the dolphins and manatees swimming out in Sarasota Bay (the video above was filmed during one of those picnics). My other favorite part was listening to her critique of the houses in our neighborhood, especially as it related to color choice, texture, and design.

Probably one of the things that made me the most anxious during that time was when mom couldn’t find her glasses. We had an abundance of “cheater readers” around the house, so the challenge was navigating around the cheaters to find her prescription glasses so she could read or sign whatever was in front of her. “Here, they are!” I would say while handing her the glasses I had in my hand. “No, those are magnifiers,” she’d say. It was frustrating, as many of them had the same shape frames.

Mom and Dad (who together battled autoimmune illnesses for 25 of the 60 year they were married) both have been watching over us from heaven for a few years now. A few weeks ago, in searching for my glasses, I ran across Mom’s. I thought “here they are!” – half expecting her to be sitting on the sofa in my place saying, “Oh good, you found them!”. But this wasn’t the case, and as I held them in my hand, I found myself relieved of that same anxiety I felt whenever I would be searching for them.

I decided to put them where I know I would be able to find them easily if needed – they’re on the boat.

Our Family Fauci Story

Here’s why, like many people across our country, I’m a fan of Dr. Fauci.

In 1992, my mom called at 6:00 am one morning and said: “your dad is in the hospital at the Brigham; get here when you can.” (I was living just outside of Amherst MA at the time, it took me under an hour to get there).

It was one of those calls you never want to receive.

Mom and dad were sailing and had arrived in Cuttyhunk, a small island off the coast of Massachusetts. They had just put the boat on a mooring in the harbor and were getting organized when dad suddenly fell flat on the deck of the boat and briefly lost consciousness. When he regained consciousness a few minutes later, mom was so concerned that she radioed for the seaplane to come and pick them up so they could fly back to the mainland for medical care.

Mom was a retired Emergency Department, Registered Nurse. Dad had been feeling “sluggish” for several months (initially they had thought he had asthma), but during this weekend, he felt well enough to go sailing. As mom remained more conscious of his symptoms, she decided to call for the seaplane right away.

Things Get Worse:

They flew back to New Bedford and then went to a hospital that, because of their small size and limited resources, could not fully assess what was going on, so he was subsequently transferred to the Brigham and Women’s Hospital in Boston. Within minutes after arriving into the Emergency Department, Dad had six seizures, followed by a brainstem stroke, which left him in a coma. By the time I arrived, he had been admitted to the oncology pod, still in a coma, while they continued to evaluate him. Because Brigham is affiliated with medical schools in Boston, — many teams subsequently arrived to assess his symptoms.

After days of obtaining a thorough history, tests, labs, he was subsequently diagnosed with Wegener’s Granulomatosis syndrome — (which was confirmed when his Brigham team consulted with Dr. Anthony Fauci at the National Institute of Allergies and Infectious Diseases).

After a few more days, mom and I were scheduled to meet with the neurology team to discuss whether he would ever come out of this coma and what our best next steps should be in caring for him (i.e., “do we bring him home?”, “does he need surgery?”, “what is his overall prognosis?”). From his team at the Brigham, we learned that multi-organ failure was a symptom of Wegener’s and that there were less than 500 people in the United States who had been diagnosed with it. It was referred to as an “orphan illness.”

Dad’s Wake Up Call

A few days before our scheduled meeting, one night after dinner, the phone rang. It was my Aunt (dad’s sister) asking Mom if she could bring a priest into the hospital to pray for dad. So late Thursday night before our Friday morning meeting with the neurology team, my Aunt and my cousin were with the priest who was praying over dad. At one point, he reached for my dad’s hand to hold it, and he (my dad) jerked his hand away, which caught everyone off guard as it was a sudden jerky movement from a guy that (up until that time) had been in a coma.

Fast forward to early the next morning (6:00 am Friday): I was the first to arrive and was walking into the department when the primary Doc asked me, “is the rest of your family here?”. “No, not yet,” I told her, at precisely the same time Mom and my brother came around the corner and walked down the hall to where we were standing. The Doc looked at my mom and said, “I can’t really explain what happened, but your husband is awake and conscious. They have the news on so he can be more oriented to time — but we were all glad to see him awake and talking to us”.

Because the illness he had affected his organs, he needed to stay a few weeks longer and then also (subsequently) have cardiac double bypass surgery.

All this to say — while Dr. Fauci was not his Doctor, the fact that dad’s team at Brigham and Women’s consulted with him was inspiring because of the quality of care they provided and the years added to his life.

Let’s Just Think About This

Now, whenever I see Dr. Fauci standing behind the President or speaking at a press conference, I feel a lot more relieved because of how knowledgeable he is considering the complexity of the Covid-19 virus. And then I remember my dad and the battle he fought. Because of the care and recommendations he received, he was able to live another 22 years (and celebrate his 60th wedding anniversary with mom).

Having experienced the autoimmune illnesses that we have in our family, we learned that Dr. Fauci is a guy you would want to have on your team because of his knowledge, tact, compassion, and the length of time he has been at the NIAID. It’s 2020 — he’s worked at the same place since the mid-1980s; let’s just think about that. In my mind, a 40-year career at the same place isn’t just a “job,” it’s an honorable life mission.

As my dad’s illnesses progressed over the years (and in 2009 when his symptoms worsened), we went to one of the top-notch cancer treatment centers in the country close to where they lived in Florida. The team informed him and mom that his cancer had returned, and there “was nothing we can do for him.” They told mom she should “just bring him home and watch over him.”

But — as usual, that didn’t deter mom who asked their neighbors for names of oncologists in the area. Once she found some names, she called me and said: “I have some names and was wondering if you could look them up on your computer.” I researched each name on her list a bit more and found that one of the Oncologists had completed his residency in Boston. Mom and dad scheduled an appointment and drove over to meet with him.

In meeting with the Oncologist, they learned he had been a resident in Boston (at the Brigham) for the same Doctor who had been dad’s Nephrologist (the Doctor on his team who had contacted Dr. Fauci to confirm his diagnosis). He subsequently agreed to care for dad and provided care in the form of that delicate balance of chemo and radiation, which led to his cancer being in remission for a few more years.

Looking good and fighting on at 80 y/o

As illnesses go, however — (especially when they’re compounded with his Wegener’s), Dad’s cancer ended up coming back, and that’s what was the cause of his death in 2014; years after the guys at the best cancer place said to mom there was nothing they could do for him.

Retrospectively, on the one hand (and when mom has had this conversation with other people), they have said to her, “well, the Cancer hospital was right as that’s what he died from.” On the other hand, when I think about the quality of his life from 2009 forward and the time we all spent together, I’m pleased mom didn’t listen to them. I’m glad we were able to find an outstanding Oncologist as well as a great primary care physician who had retired from Johns Hopkins and set up his practice on Anna Maria Island, close to the beach and 15 minutes away from mom and dad’s home.

I’m proud to live in a country where you have experts and highly skilled professionals like Dr. Fauci and Dad’s team at the Brigham that you can ask (or consult with) who can make recommendations and broaden your scope of knowledge. And yes, where they also support each other in hospitals and healthcare organizations across the country who continue to provide compassionate care for the patients and families they serve. While I have never met Dr. Fauci, I will always be grateful for him and our Brigham and Women’s team for their excellent care, recommendations, and follow-up.