Dad - The Last Six Months

Dad died last Tuesday, January 22nd, at about 10pm. Dad was surrounded by his entire family and literally took his last, labored breath in his home as his grandkids read to him—reading their favorite children’s stories that Papa used to read to them when they were small. It was a unique and beautiful event.

I’ve included my description of Dad’s decline over the last six months. It’s fairly long and I apologize. I guess I wrote it more for myself but thought that it would provide background for people to understand how things ended for him and us.

Richard
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The last six months have been an amazing downward spiral for Dad. To the family it still doesn’t seem real. Looking back on it his decline was steady and fast with the occasional plateau of recovery that brought hope but was usually short lived. Halted by a worsened condition or infection. I have said over and over “He never caught a break” in this whole affair. However, he received wonderful care from the institution where he had spent the last 40 years of his life researching, practicing, and teaching medicine. And if there is a positive to take out of this for me, it is that the amount of family togetherness and support through all of this has been marvelous. It has made us a stronger family and brought us all closer. Of that Dad would be very proud.

Up until July last year Dad had been a pretty healthy seventy four year old. Active and mobile, although definitely beginning to experience his age. In July Dad began to experience discomfort in his gut. Tests results and symptoms let to a self diagnosis of drug induced hepatitis. He stopped taking some medicines he was on and his liver tests actually showed some improvement. This would later be recognized as a false sign of recovery. Dad’s condition continued to decline. He became weaker and weaker and began retaining a lot of fluid in his stomach and legs. He underwent treatment for those symptoms. By mid-September Mom had to use a wheel chair to get Dad to his appointments. As his condition continued to decline without clear explanation, a liver biopsy was done in late September. It revealed non-Hodgkin's lymphoma. Cancer in an advanced state. Given Dad’s strong organs and the fact that large cell lymphoma is quite treatable doctors recommended that Dad immediately be hospitalized, stabilized, and start chemotherapy. I remember we felt shocked by the discovery of cancer but relieved in a way that a definite course of action could now be taken.

After two and a half rounds of chemotherapy tests revealed that the cancer was in remission. Dad’s liver had shrunk dramatically in size. His physical state however continued to deteriorate. Dad continued to get wonderful care from staff at the UW and Mike continued to work extremely closely and put in much extra time and consultation with the team of doctors. Mike probably experienced more direct daily stress and pressure. He was a constant presence, monitoring all tests and results. Being with Dad in the hospital and at home (which must have put a stress on home life). He was extraordinary.

A month after stopping chemo Dad could no longer stand on his own. Just as tragic he no longer had the amenities to read, his appetite was gone, and he had become quite depressed. Humor emerged from him from time to time but it had to be mustered.

With Jay home it was nice to have all Dad’s sons around him. Dad returned to the hospital about a week before Christmas. He was weaker and his mental condition was poor. He was treated for a blood infection no doubt brought on by his weakened immune system and poor general health. Dad’s brother John and Vicky came down from Vancouver Island to visit Dad in the hospital.

Returning home after several days in the hospital mentally he was better but his system had received another huge blow. At home for Christmas he spent most of this time in his bed. He was not happy and seemed only to want to rest. He had began to rebel against Mom’s attempts to care and motivate him to recovery. His poor appetite meant that he was not getting enough nourishment. Emotionally things had really begun to take their toll on Mom, who despite all this continued to be up, positive, and worked tirelessly, often at all hours, to care for Dad and make him well.

Friday December 28th we had to take Dad back into the hospital. He had a bad cough, a fever, did not wish to get out of bed, and his mental state and temperament had become very agitated. In the hospital he was diagnosed with pneumonia and once more given a round of antibiotics. His system had taken another hit. After several days of antibiotics, mentally he was lucid but his voice was weak and he struggled to get out sentences and it was difficult to understand him.

On Saturday Mike helped arrange a meeting with Dad’s oncologist at the Cancer Care Alliance, Dr. Petersdorf. Mom, we four sons, Polly and Ellyn were on hand and Dr. Petersdorf facilitated a discussion of what was to happen next and what the family wanted to do. Dad’s cancer was in remission. The chemotherapy had done its job. But his body was in steady decline and not recovering. We discussed home care. We concluded that Dad wanted to be home, comfortable, but that we were not giving up the fight. To this Dad agreed although not emphatically. Mom would begin working with the social worker to coordinate care from home, although officially we were not at the state of hospice. What the meeting had achieved was an understanding amongst the whole family, for the first time, that we may be entering the final stretch. I think up until this point not all of us were able to believe that Dad might actually not recover.

The next morning, Sunday, December 30th, Dad called Mom, Mike, Jay, Brian and I from the hospital to inform us that he was done. He wanted us all to come in so that we could start the process of removing him from medicines and care sustaining his life. Dad said to bring him a gin and tonic with extra lime and some good wine to enjoy. He said he wanted his memorial service to be a festive gathering with music and lots of wine. Nothing somber.

The four of us canceled our plans for a day in the snow on Snoqualmie with friends and headed into University Hospital. Upon arrival we learned that Dr. Petersdorf and the nurse, Linda, had convinced Dad that dying in the hospital at this point was not right. That the family needed to have time and a chance to care for him at home. It was amazing to us that they had been able to change his mind so quickly. We were relieved. Dad spent New Years in the hospital. The adults all visited him and Mom after dining out and brought in the family 2007 New Years Video for him to view from his bed.

Dad returned home several days later. The hospital bed, oxygen machines, IVs, and equipment had been set up in the small sun room where he could view the front yard. We set up bird feeders all around the windows. Jay left to return to Kansas on January 7th.

The next several weeks are already becoming a bit of a blur. Although receiving lots of help Mom continued to provide most of the care for Dad. We had a care giver that would come and stay all night with Dad and eventually had one there during the day. There was a fairly regular schedule of nurses, social workers, insurance staff, and well wishers. Mike, Brian, and I scheduled things so that we had someone there for dinner each night and often during hours of the day. Dad got to the point where it took 2 strong adults to get him out of bed to use the toilet or go to the dining room. He began to make that trip just once a day in the evening. His appetite was poor.

Dad’s condition worsened again when he came down with another infection the week before the MLK weekend. At this point to hear him you had to put your ear up to his mouth. His appetite had shrunk more. And once again this culminated in a fever and agitated temperament. He had deteriorated to the point that had Mom very depressed. It was during this time that Mom said one night she did not believe Dad was going to recover. The first time I had heard her say this.

Jay got home again for the MLK weekend. During the week prior Dad seemed to have an upturn after Mike had worked with nurses and doctors to get a blood test and administer another round of antibiotics. The antibiotics were stopped and as the weekend progressed Dad’s condition again worsened. On Sunday evening all four sons gathered in Dad’s room and sang songs until late in the night. Mom joined us.

Jay left Monday. On Monday night Dad’s condition was so poor that we all gathered at the house and called Jay. We decided that we were not going to give Dad anything except medicine to keep him comfortable. He was receiving small doses of morphine and another medicine to keep him comfortable. Jay planned to return on Thursday. Spending almost all his time in bed his body constantly twitched and his eyes moved. He could still understand and hear from what we could determine but communication was very hard for him. Sitting with him and squeezing his hand did not seem to get a response.

On Tuesday, John and Vicky had arrived. They had been calling and checking in on Dad and the family almost every day since Dad's diagnosis. Mom had told them to come. That evening as Evan and I finished at his soccer practice Polly appeared at the field telling us that we needed to get to Dad right away. His breathing had changed and Mike didn’t think he had much more time. Evan and I arrived at the house and all the family was present. Brother, sons, daughter-in-laws, grandkids, dogs. We all spent time sitting in Dad’s room by his bed. His breathing was slow and labored. His eyes were shut and he still had the oxygen tube in his nose. Sometime it seemed like 8 – 10 seconds between his breaths. Most adults were out in the dining room as Janie, Meghan, and Evan read to Papa. They read some to their favorite stories aloud to him that he had read to them years ago. And that was how Papa died.

Mike could detect no pulse and he closed Dad’s eyes. It was wonderful to have everyone there to cry with and hug. We got Jay on the phone and all of toasted Dad. We spent what must have been the next two hours sitting with Dad, grandkids and everyone, telling their favorite stories about Papa and Dad. There was humor and joy. It was an amazingly peaceful and pleasant way to see him off.

The staff from the funeral home came to pick Dad up. It must have been around mid-night. I was not prepared for this dramatic experience. Seeing Dad’s body wrapped in a large white plastic bag before being wheeled out the front door was extremely painful. It didn’t seem like the appropriate end. Another intense good-bye.

Many of us stayed the night at Mom’s house. Brian stayed the next couple of nights, too. Jay arrived the next day and a lot of time has been spent with Mom and at the house to provide support and help with the myriad of tasks required to deal with a death.

One remarkable thing to me is that despite Dad’s intense planning and desire to not fall into a debilitated state in the end things happened so quickly he had no time to pull out of it. We all agree that he declined way beyond a state that he would have been content with. He did not want to be a burden or have that be his legacy. Ironically he was probably in the best state to go when he called us all in to the hospital. At that point he was still quite lucid and very aware of his state. He fought for us in the end. Talking to Mike last week Dad evidently believed he was doomed months ago. He told Mike one day in the hospital that his biggest goal was being able to leave the family strong and in a state where they could thrive without him. He told Mike that he felt he had done that. We agree although I’ve wondered how we will ever fill his role as leader and guardian of the extended family.

The last week has been a blur. Sad, intense, consuming, and exhausting. Many family gatherings and visits. Details and arrangements. Its hard to think about work but it is piling up. Gathering energy to plan Dad’s celebration is a little difficult, too. So many things remind me of Dad in some way. I wake up at night thinking about him or something related to him. His death still doesn’t seem real.

Through all this though it has been wonderful to have the entire family together and so supportive. That has been an amazing and joyous experience. All the uncles/dads, aunts/wives, and grandkids engaged and together. Kammie, Polly, and Ellyn have been wonderful and strong throughout this whole process. Supporting us, being with Dad, nursing him, and helping Mom with genuine care and love. It has definitely brought us closer and I think Dad would be proud of the energy, community and affection that have been rendered through his passing.
And there was the constant pulse of friends and family to help and remind us that we were not alone in any of this.

I am now thinking about the legacy that Dad has created and what that means to me in my life. I don’t have it all figured out but I intend to have some plan for it. He was not a perfect man but he did recognize his flaws openly—many of them increasingly on display as he aged. He could have a quick, combustible temper (which has been handed down to his sons in various degrees). Dad could be cautious to a fault. “Don’t drive in the middle lane, Rich…This is a dangerous corner… Why drive downtown—you could get in an accident”. It frustrated us sometimes how unadventurous and risk averse he could be. Looking back on it, this affected many aspects of his life. Things like investments, travel, remodels, cars, and relationships just to name a few. I know it affected his work and what type of administrator and leader he was because he told me. He could be very stubborn and, like many I guess, he became more set in his ways the older he became. Ironically, he was an awful patient. We always knew this and we saw some of that in his difficult final months.

On the other hand, he practiced humility and believed strongly in justice and truth. I know that what he instilled in all of his sons was honesty, hard work, and the desire to constantly learn and improve. He affected so many people with his teaching and medical skills which he carried out with kindness and caring—especially to those in any kind of need. And he has inspired in us an appreciation of art and literature and the immense social and gastronomic pleasures of good food and drink. We have gained through him a love and wonderment of nature, and a delight in humor. And perhaps Dad’s (and Mom’s) greatest gift for us is the deep, strong bond that exists between their four sons. I hope we can pass that down to Dad’s grandsons and granddaughters.