It’s been awhile since I posted anything substantial on my blog. For good reasons. Life took a detour and ended up in a very remote and foreign land.
It all began in late May, May 31st to be exact. My former husband called me on what would have been our 40th anniversary to wish me a “happy anniversary”. I was out of town for the weekend. We had been divorced almost 8 years, but he remembered this day every year. His voice sounded strange - very weak and his speech was slurred. I wondered if he hadn’t had a little alcohol to celebrate the date. When I mentioned this, his response was that he was tired, couldn’t sleep and no, had not been imbibing since he was training for an ultra marathon in September.
The next day his speech was just as slurred when he picked me up from the airport. His right hand had a slight tremor. His chest hurt. He had gone to a pulmonologist to have his chest examined that day and the doctor could not find anything to indicate problems. Just a slightly elevated thyroid. I know that thyroid problems can create speech disorders and tremors, so I wasn’t too concerned.
A few days later, it was apparent that the slurred speech, hand tremors and sleepless nights were getting worse. Another doctor, a neurologist, performed an MRI. Another doctor put a EKG and EEG monitor on his chest for 48 hours to check his heart rythmn. Two weeks into this disorder and his health was failing. No appetite, poor balance and weight loss. He was agitated, highly stressed. This from a man who ran marathons, ultra marathons and ate voraciously. June 13th, Father’s Day, was painful. He could hardly walk. He barely ate the brunch I had prepared for him - his favorite of waffles, sausages, fresh fruit and coffee. This was the last day he was able to drive his car.
On June 23rd, another doctor (internist) ordered a spinal tap to eliminate possibilities of ALS, MS, Parkinsons, and any degenerative brain disease three weeks into the first symptoms. I took him to this exam. The doctor was concerned. He had lost 14 pounds in 3 weeks; went from 178 to 164. He couldn’t stand without assistance. His speech was terribly slurred. He had a hard time concentrating. Couldn’t do crosswords. Couldn’t read books he loved.
On Thursday, June 24th, Bob couldn’t get out of bed. He was supposed to remain flat on his back for 24 hours to prevent dizziness from the spinal tap, but he was too tired and weak to even try to get up.
The next day, Friday, June 25th, he had a 9 o’clock appointment with a noted cardiologist at Intermountain Medical Center because his heart tests proved to be troublesome. I had to work that morning, so a dear friend drove him to the appointment, and then was going to drive him to mediations he had scheduled for that afternoon.
At 9:45 am I received the call that he was being admitted into the hospital. His heart was failing. Maybe a pacemaker. Maybe an ablation. But he was being sent directly to Cardiac ICU.
When I arrived in his room early that afternoon, a team of doctors were trying to piece together this broken man. Heart failure team, the cardiologist, the neurologist team, and the nerve team. Serious. Very serious. He was hooked up to monitors everywhere. ICU for three days until the heart was stabilized. By Monday, he was moved from ICU to the cardio floor. More tests. More doctors. By now the heart was pumping well and a pacemaker was not in the picture. Maybe an ablation. That team pretty much had done their jobs and released him from their care until further studies.
After four days on the cardio floor, neurologists couldn’t figure out what the problems stemmed from; they were baffled. All tests came back negative. The ALS, the MS, the Parkinsons. Only one test remained outstanding. Neurologists concluded it was a brain stem cancer. A move to the neurology floor to give him a better chance of recovery. T-14. We were hopeful. Two days later, no change. Maybe it’s Hashimoto’s Encephalopathy. Let’s get that steriod treatment going. Two days later, no change.
Our son, Justin, flew in on July 1st to visit his dad. He was shocked at his state of health. What shall we do? Move him to a top hospital such as the Mayo? UCLA? No, he was getting the best care right here. The doctors will figure it out. It will be soon. Justin flew back home on the morning of July 4th, with plans to come back the following week. He had a full calendar at work for the next week.
By July 4th, he could hardly walk from the bed to the bathroom without assistance. His weight was dropping drastically. Doctors were pumping him with carbs. Get that weight up, please! Down to 157 pounds, nearly 20 pounds lighter than one month earlier. Visitors brought strawberry shakes, I brought burgers and fries, anything to get some meat on those bones. Nothing worked. He had no appetite.
Tuesday, July 6th. Dr. Call, the neurologist on staff that week, cornered me in the hall. He showed me a sheet of paper he had just received from the Prion Center at Case Western where the final spinal tap test was performed. 85.1% postive for Creutzfeldt-Jakob Disease. I knew what that was. I fell to my knees.
Fatal. No possibility of treatment. Dr. Call went into the room and talked with the patient. Laid it on the line. It was the hardest day of my life. How long, he asked? Weeks at most.
The room was spinning. How can we go from hopeful to fatal in such a matter of hours? Bob was stoic. He always was. Okay, he said. I was hoping for 20 more years, but, I guess not. I held his hand, I cried. He cried. I called my son in San Diego who then called my daughter in Boston. She had just moved there 9 days earlier so her husband could complete his residency at U-Mass. When she called him at the hospital and gave the diagnosis, he groaned, “Oh God.” My daughter packed that day for herself and her twin three year olds and was on the next flight out in the morning.
Bob was in full control. Had his real estate attorney, his estate planning attorney, and his list was being composed for the memorial services. We discussed what he wanted, who he wanted to speak, and such.
It was a whirlwind of a day. I was on the phone all day, inbetween comforting and tears.
Our daughter arrived the next day with the two little girls in tow. We cried as she descended from the escalator and Gianna ran towards me, yelling “Mimi, Mimi”, and jumped up into my arms. A heartbreaking memory.
I dropped my daughter off at the hospital, warning of his condition and his appearance. I took the girls back to my house for lunch and a nap. The next few days were a blur of shuttling back and forth to the hospital. Word had gotten out about his condition and people were showing up at the hospital in droves. Enough. I had a list of those who were permitted to visit. Others, sorry. This was the time for family and close friends only.
Hospice was taking over. They were great. His final days were going to be at my house, in the dining room, overlooking the garden. Hospital bed was set up at 10 am on Thursday, July 8th. At 11 am, I got a call from Sarah at the hospital that another neurologist wanted to perform a “Hail Mary” treatment. Bob wanted it. Okay, bed had to be picked up. Friday morning was the insertion of the three catheters in his neck. A nightmare reaction to the medication. Four hours of intense convulsions. Five of us to hold him down to prevent the catheters from being pulled out. Everyone involved was shocked at the reation. This is not what we wanted, not what he wanted, for sure. After he was pumped with enough sedatives, the first of the three treatments was performed in his room. By 4 pm, Bob was sedated enough to sleep.
At 8 am the next morning, while feeding breakfast to the girls, I got the call that Bob wanted to see me. Sarah was already at the hospital. She had spent the night with her dad, by his side, watching his condition deteriorate by the hour. Bob was visited by the neurologist at 9 am and announced that he was done. No more treatments. He was ready to go. The doctor was relieved, I think. He could see it would not be beneficial at all. That Saturday was a transition from hospital care to hospice care in less than 3 hours. A team from Hospice took over, gave us the rundown for the next few days, and everything was in place for Bob’s final days to be spent in the same room at the hospital with the most attentive care of an incredibly supportive staff.
We stood vigil; he was animated (as much as he could be). He was fitted with a catheter for urine. He was not given any food or water, since he couldn’t eat or drink without choking. Meds were administered.
By Sunday, his weight was down to 148. A shell of a person. Bob was somewhat lucid; heard everything we said and made gestures to keep us laughing. We joked. We cried. By Sunday night, he closed his eyes, never to open them again. His breathing was erratic.
The nurses were amazing. The doctors supportive. Justin was called on Tuesday morning that his dad had maybe hours to a few days remaining. He flew in that night and went straight to his dad’s bedside.
Wednesday, July 14th. Bob was not responsive. He couldn’t move. Breathing was labored. We counted the breaths. Justin and I stayed until 10 pm. Sarah wanted to remain at the hospital. The girls had not seen their mom for hours. They needed Mimi and Justin there in the morning.
At 4:15 on Thursday morning, the 15th of July, I sat up in bed, startled by something. I called Sarah’s cell phone at the hospital. He was breathing with difficulty. I got up, showered, dressed, answered some emails, and started making blueberry waffles for the girls’ breakfast. At 7:21 am the phone rang.
It was Sarah’s cell phone. All I heard was wailing. I knew. “We’ll be right there!” I said. I screamed down to Justin in the basement where he was getting ready. I called my next door neighbor, Mary, to watch the girls until I could get reinforcements. The twins were still sleeping, so they never saw the transition from Mimi to Mary who was at my door in less than 30 seconds, dressed for the day. Justin and I drove in silence all the way to the hospital, a 20 minute drive with no traffic.
I used valet parking for the first time in 3 weeks. We ran to the elevators and up to the 14th floor.
Sarah was sitting and crying in the waiting room with two other friends who were there when Bob passed. The nurses were getting him ready for us to visit one more time. I couldn’t believe this day had come. Relieved. Sad. Confused.
We went into his room for the final time. His spirit had left him. A shell of a man. Still warm. Not the Bob who entered the hospital almost three weeks earlier. We held his hand, kissed his forehead, and said goodbye for an hour. Some more relatives and a good friend came to say goodbye, too. It was over.
Now the hard part. The funeral, the mourning, the excrutiating sadness for my children to lose their dad at such a young age. The grandchildren will not grow up with the love of Grandpa Bob as their grandfather. He loved them. He adored them. They loved him. They adored him.
A weekend of planning, phone calls, endless guests in and out of the house, food being delivered by friends and neighbors, stories of Bob, tales of better times, and lots of liquid refreshments. Lots.
Bob’s funeral services were attended by over 300 mourners. We buried him on July 19, 2010, eight years to the day of our divorce. Life is strange. Life goes in waves, peaks, and valleys. These last 50 days were a rollercoaster ride of unprecedented proportions. And now the hard part. The sadness. The loneliness of the holidays for my children, and the realization that Bob will never see his granddaughters grow up or see and future grandchildren be born.
People grieve in different and individual ways. Some people come by and just listen and comfort. Others create drama around their grief, making life more difficult for those around them because it’s all about them, of course. And others just crawl into a shell and then don’t come out for days. I have experienced all of the above. But until all this is digested and has passed, then we all need to be kind and considerate. Kisses and hugs. Food and wine. Laughter and tears. And patience. Lots and lots of patience.
Love to all my dear friends and family who supported us through the last 2 months of medical hell.
We appreciate you all so much. Your food sustained us. Your hugs comforted us. Your stories revitalized us. Your love touched us.
