Archives for posts with tag: death and dying

Life is full of choices but there are some choices we don’t have. We don’t choose to be born. This is something about which those of us who have or have had teenage children have been informed. Most of us also don’t choose how we die but want a peaceful passing without suffering.

My dad enjoyed good health for about 81 years. Then he started showing symptoms of Parkinson’s Disease, which he tried to ignore, all the while becoming increasingly impaired physically and cognitively.

Dad came to Zoey’s 19th birthday last September. He was walking unsteadily with a cane and to our horror, was still driving. By October, he could barely walk with a walker and to our horror, was still using the stairs in the house. His first hospital trip was in November. An enlarged prostate had blocked his urethra. His bladder was drained of 2 liters of urine and he was admitted to the hospital. Dad’s bladder continued to drain with a Foley catheter, something he hated, and as it turned out, would need to keep for the rest of his life. Noting symptoms of untreated Parkinson’s Disease, the P.T. and O.T. department referred Dad for short-term rehab.

The first rehab facility wasn’t home but it was really nice. Dad had periods of confusion accompanied by agitation at home, especially at night. Mom was up with him during those times. Dad felt well cared for there. He was a charming and grateful patient. Dad made good progress in his physical therapy and started taking medication for suspected Parkinson’s. Mom and Dad celebrated Thanksgiving and their 63rd wedding anniversary in that facility. He was discharged shortly before Christmas and enjoyed the family party at his house.

Dad was back in the hospital in March with a gall bladder attack. It was there that stage IV prostate cancer with bone mets was discovered. Dad started treatment immediately, taking an oral hormone blocker. He already hated his frequent urology visits and now oncology visits. Dad hated being in hospitals and medical clinics almost more than the treatments he received.

There was still the issue of his gall bladder. At the urging of an incredibly kind and experienced palliative care physician, he saw a general surgeon to have his gall bladder removed. It was planned as an outpatient procedure. I was dubious and the surgeon was kind and realistic about the chances that Dad would be admitted to the hospital for monitoring, especially for signs of infection. After surgery, Dr. Burke explained that Dad’s gallbladder had been “dead”, something that likely happened after years of dysfunction. He also explained that the surrounding tissue was inflamed. Dad was admitted to the hospital overnight and discharged the next day.

Dad did get an infection but it was due to his Foley catheter. Shortly after leaving the hospital, he was readmitted. Dad was sitting in his favorite chair, was in pain, and couldn’t move. During his 12-day hospital visit, he became septic. I really thought he was going to die during that time. He responded to antibiotics and improved. However, Dad’s mobility was quite limited and not good enough to be discharged to home. He went to another rehab facility for another 30 day stay. Unfortunately, the nice facility was not available. The one he went to had good physical and occupational therapists but the environment was bleak, the nursing staff was inconsistent, and the communication about his progress and treatment plan was poor. Dad hated it there. He refused almost all food while he was there, even when we brought outside food.

During the earlier part of these months, Dad and I had conversations about his wishes for a peaceful death and an end to his suffering. Eventually, the idea of a peaceful death became impossible. How could Dad have a peaceful death with all of the suffering that had already transpired? Dad had been an outdoorsman, a builder, an athletic and vigorous man into his early 80’s. He was a level-headed, methodical thinker. Dad had a mind like an engineer and a sensible person. Dad and Mom had decades of wonderful married life. Dad lost his ability to stand, pee on his own, have sex, and even the ability to consistently know where he was. At times of confusion and agitation, he was mean to Mom. When he remembered that he was mean, he felt guilty. He also asked to die during the night, several times a week. This went on for months. The idea of a peaceful death sounded like a joke.

Nonetheless, we kept trying. It was June. The neurology appointment that we’d waited 7 months for had finally arrived. Mom and I wondered if it was wise to bring him to it given how much sicker he’d gotten and how much he hated going to see doctors. We ultimately decided that it was important for him to have a proper diagnosis and treatment. Dr. Davis was very good. She took her time, confirmed the Parkinson’s Diagnosis and modified Dad’s prescriptions.

Within a week, Dad was actually able to initiate conversations. He was more responsive. He became interested in his P.T. and started practicing getting in and out of bed at the rehab facility, with the help of my brother, Steve, who is a natural P.T. Dad started working to go home. He wasn’t always convinced that he was going home or that the rehab facility was not his home, but his lucid periods were longer and more frequent.

I pressed the facility for a progress update because they hadn’t told us a treatment plan or anything. By the time we had a case conference meeting, Dad was mobile enough for discharge. We planned discharge and got a referral for hospice services. Dad was so excited that he was going to be discharged.

Going into hospice care meant stopping aggressive cancer treatment, Lupron shots, every three months. I explained this to Dad and got as clear of an answer that this was what he wanted, as I could, given that he slipped in and out of orientation. Fortunately, we’d had talks before. He had told the palliative care physician that he wanted me to advocate for his wishes. Fortunately, Mom and I wanted the same for him.

Dad was also getting a bone strengthening injection from oncology to protect him from bone fractures. I asked the hospice nurse, Kim, who did Dad’s initial assessment, whether he would be able to continue to have them. Kim told me that she had to contact the regional medical director for hospice, a physician in Arizona, for authorization.

Kim called back later that day. Upon seeing my dad’s file and noting that he’d only been treated for cancer for two months, the doctor asked, “Why do they want hospice now? If he was treated for the cancer, he could live three more years?”

Kim was really kind. It was a fair question to ask given the information the physician had. I explained that this was not my dad’s prognosis, we were told 1-2 years. I also explained his daily suffering and his almost nightly despair. I noted that doctors kept finding things wrong with him and that I wondered what was “under the floor boards” that hadn’t even been examined. I explained my Dad’s wishes and my commitment to honoring them. Kim was understanding and supportive.

Dad came home on Monday 6/25. He was so happy! My brothers and my husband had built a wheelchair ramp for him over the previous weekend. He loved it! Hospice had delivered all of the durable equipment over the previous weekend and we’d put it in place. Dad loved it! “Hey Dad, look at what Hospice and Medicare have provided for you!” The intake nurse, Helen, was kind. Dad stayed awake for the whole meeting, which was unusual.

My brother, Steve, came to the house daily to provide custodial care so that Mom and Dad did not have to hire people privately. Dad would be cared for by Mom and my brother, by family. What a blessing! Steve planned fix-it projects for the house and took Dad on field trips to the hardware store, in the van he had bought especially to transport Dad.

Dad started eating again. He was awake longer. He was talkative. He had a few really good days. Home had made him so much better. I was thinking about the upcoming months with Dad.

After less than a week at home, Dad had a really agitated night. He and Mom were up all night. He kept saying that he needed to get up out of bed and crying for help. The hospice nurse came over, discovered that his catheter tube was blocked, fixed that, gave him lorazepam for agitation and instructions to keep giving it to him. She instructed Mom and Steve to keep Dad in bed for the day for rest and that he would likely sleep through the next day. Dad went to sleep. It was a Friday. He slept through Saturday.

He was still asleep on Sunday. We figured that he was still sedated and needed to sleep it off but we were also worried. Steve called the desk nurse for hospice. She said that she would have one of the nurses call him but also said, “Prepare for a peaceful death.”

“Prepare for a peaceful death!” What????????!!!!!!!!!! Just the week before, I had been asked if we were starting hospice too soon!

The nurse came to visit, said that she thought the lorazepam was still working through his system. Monday came and he was still mostly asleep. The hospice nurse came over to the house. She said that she smelled ketones in his urine. He was burning fat instead of sugar. She said that she thought he was “in transition.” Steve called in the night nurse, who we particularly trust, for a second opinion. She said the same and estimated that Dad would likely die in a couple of days. She also cautioned us to pace ourselves for the possibility that it could take a couple of weeks.

The next day, Tuesday, Dad was significantly more alert. He asked for ice cream, which Mom and I gave to him. He saw the birds lighting on the tree outside his window. Dad moved his mouth to the Lord’s prayer when Mary, the lay minister from their parish, brought him communion. Father Ed, the parish priest came over a few hours later to give Dad the sacrament, Anointing of the Sick. We as family members were able to participate in giving Dad an individual blessing. It was very moving.

On Wednesday he was mostly unresponsive except for exclamations of “help, help, help” He breathing was labored. We gave him comfort medicine, lorazepam and morphine, at regular intervals. Yesterday was Thursday. I worked in the morning and went over to the house at about noon. Dad’s breathing had become even more shallow. He was struggling.

Steve had called hospice. Kim, the nurse who had originally assessed Dad, came to the house about 45 minutes after I got to the house. Steve had gone home to rest. Kim examined Dad. She said that his breathing pattern was typical for transition. During the evaluation, Dad’s coloring got worse. He was even more pale and ashen. Then there were long periods between his breaths. Kim told me that his death was close. I called Mom into the room.

Kim held Dad’s head and stroked it. I rubbed Dad’s shoulder. Mom held his hand. Mom and I sang, Amazing Grace. Dad took his last breath a few minutes later.

Kim had tears in her eyes. She hugged us both. We thanked her. How grateful we were for her guidance. It helped us be there for Dad.

Peace is not an on-off switch. Dad had moments of peace even in the suffering. He asked for ice cream. He told Mom that she was his “first love”. That was two days before his death. Yes, he was suffering, but to rise above that to ask for a simple summer pleasure and to profess love? That means something. It means a lot.

My Dad was surrounded by love when he died. He had a peaceful death at the very last.

When I talk to my husband, he often doesn’t answer. This is not new to our relationship. It has been true for decades but waxes and wanes depending on his stress level.

Sometimes, he is just spacey and lost in thought. Other times, he is feeling anxious. He is very sensitive to rejection at these times. I may actually be annoyed or mad at him. I may not be mad, at all and just trying to get the business part of our lives done and coordinate household responsibilities. I am an organizer and a “big picture” person when it comes to administering a household. John is not. After many years, he asked me to start writing tasks on a “honey do” list, a little white board in our kitchen. I don’t really like doing this. I think he would be more likely to remember to do the task if he wrote it down himself. For some reason, that is something he just won’t do. He wants me to write it down. Sometimes this feels like a face saving move on his part. I wouldn’t mind writing it down if I didn’t know that a number of the things I’ve written down, stayed on that little board for years. So it filled up with tasks, most of which never got done. And every time I worked in the kitchen, I would see it and it was a visible sign of my frustration.

I hate the silence. The non-answers that could mean many different things. But even when my husband is merely lost in thought, the silence hurts. Relationship intimacy doesn’t just come with the package, it is something that must be continually nurtured and protected. It is important for marital happiness, for sexual health, and for emotional well being.

I nag, it is true. It is not a super power but I am also not an evil villain. I often feel caught between a rock and a hard place. John tells me that he is going to do a task and then he doesn’t do it. An excellent example might be doing the dishes. I’d say that between 1/3 of the times that John says he will do the dishes before he goes to bed at night, I wake up to a sink full of dishes. About half of the time, most of the dishes are done but some are either still on the dinner table or on one of the kitchen counters. And almost 100% of the time, either the table, counters, or the stove top are dirty.

If I say something, he probably won’t finish the job because he’s already gone to work. If I need to use the sink, then I need to clean it out. Later, when we are discussing dishes, because they are never to be taken for granted because they are not yet a habit, I might clarify that what I am asking is for him to do ALL of the dishes and if the kitchen stove top needs to be wiped, I expect him to wipe it. By this time, I am at my best, using a businesslike voice and at my worst I am doing nothing to conceal my annoyance.

The follow up discussions almost never go well. John feels criticized. And you know what? I am criticizing. I am complaining about the job he did. I understand why he doesn’t like it but he often communicates to me an expectation that a loving wife doesn’t ever criticize or complain. Although I don’t think he 100% believes this, it is an ideal he has and I even think he believes it to be attainable. These are the the times when my husband’s dreamy romanticism conflict with my pragmatic realism.

Relationships are full of noise. Some of it is like beautiful and romantic music. Some of it is not. Some of it is disagreement, some is problem-solving, some is negotiation. Relationships are also full of silence. But this kind of silence, the not answering with clear words but instead answering with confusing actions or lack of actions, is not helpful. These are the times when I feel that I am to match his silence with my own. And sometimes that is what I do because I have already tried to make my point and failed time and time again.

These are the time I feel silenced, that my job is to pick up after the many unfinished tasks in my household and not say a word. Just do other people’s work and carry through on other people’s promises. There are times in my life I am resigned to this. There are times in my life when I know that my husband has many other wonderful qualities that compensate for these shortcomings.

At other times, I feel alone. I feel like there is work that I have to do and for which I will never be appreciated. If I say something, I get a negative response. If I am silent, I get no response. To have to have no routine between the two of us to take care of these things is a perpetual stress to me. Routines can make life a lot easier and require a lot less higher order thinking. I would like to preserve my mental energy for things other than working and reworking the daily household routine as well as keeping track of so much of the family’s schedule. People who do not have organizational skills like this, the skills for carrying out and managing the most boring and perpetual household tasks just don’t get it. They don’t get the value they don’t get toll that it takes on the very most developed part of the human brain. My husband and I do not have a traditional marriage but my brain works like a housewife’s and his does not.

When it comes to managing my cancer, I am even more alone. And that’s one of the main reasons that I blog. I don’t need my husband to attend my appointments any more. He has no idea what my schedule is like and how it impacts the rest of my life. He can read about it here but he can’t experience it. And when I talk about the anger I feel, the fears I have, or my annoyance with the inconvenience of it, I know he gets afraid. He wants to do something. And there’s nothing for him to do but there’s a great deal he could say.

I empathize with him, really I do. I empathize with him when I don’t know what to say to one of my friends with mets, when they speak of incredible pain or fear or anger. Every once in awhile, I think I rise to the challenge and say the “right” thing. Other times, I just do my best to communicate the fact that I care. It never seems like enough but I also know that I can’t solve the problem of cancer. I can just do my best to be present. Sometimes, and I’m ashamed to admit it, I feel negative toward my friends’ cries of pain. I have thoughts like, “She must have waited too long to take her pain meds.” It doesn’t happen frequently but at those times, I understand why so many of us have lost the support of friends and family. Our brain tricks us into blaming someone with a painful and life ending disease to protect ourselves from our own helplessness and guilt. At these time, I am forced to stare at hard truths about the vulnerability of life and that fact that people I love are in excruciating pain and experience incredible isolation.

I am a loving human being. I am also flawed. I do, however, commit to keeping present with my family, my friends in face to face and cyber worlds. In our relationships, I will make noise.

 

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George Lakoff

George Lakoff has retired as Distinguished Professor of Cognitive Science and Linguistics at the University of California at Berkeley. He is now Director of the Center for the Neural Mind & Society (cnms.berkeley.edu).

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