Tuesdays with Morrie

I read Mitch Albom's Tuesdays with Morrie recently. What a gift! Here are some of my favorite quotes:

• "The day he learned he was terminally ill was the day he lost all interest in his purchasing power."
• "When you're in bed, you're dead."
• "Giving to other people is what makes me feel alive."
• "You have to find what's good and true and beautiful in your life now."
• "The issue is to accept who you are and revel in it."
• "Learn to detach...Don't cling to things because everything is impermanent...But detachment doesn't mean you let the experience penetrate you. On the contrary, you let it penetrate you fully. That's how you are able to leave it."
• "Love each other or perish."
• "We are deficient in some way...we are too involved in materialistic things, and they don't satisfy us. The loving relationships we have, the universe around us, we take these things for granted."
• "To know you're going to die, and to be prepared for it at any time...that way you can be more involved in your life while you're living."
• "Every day have a little bird on your shoulder that asks, 'Is today the day? Am I ready? Am I doing all I need to do? Am I being the person I want to be?'"
• "The culture doesn't encourage you to think about such things until you're about to die. We're so wrapped up with egotistical things, career, family, having enough money, meeting the mortgage, getting a new car, fixing the radiator when it breaks, we're involved in trillions of little acts just to keep going. So we don't get into the habit of standing back and looking at our lives and saying, Is this all? Is this all I want? Is something missing?"

This book helped me connect to my loved ones and to cherish them. We are all so busy but the moments we spend together matter deeply. I think my dog gets this stuff intuitively. All she wants is to love and be loved.

Life is a Gift

". . . This faith is expressed in our understanding of life as a gift. The metaphor of gift conveys that life is good and that life, like a gift, is not self-created or self-sufficient. Nothing exists by itself. All of creation is interdependent-the earth, the sky, and all that lives therein. An acknowledgment of this gift of life evokes thanks and care from us." (Faithful Living, Faithful Dying, p. 19)

Life is a gift. This becomes clear when sitting by the bedside of someone who is dying. None of us is here through our own merit. It is only by the grace of God that we have life and that we are able to walk this earth, breathe the air, eat food and be in relationships with those around us. What a gift. 

My time with Mrs. G this week was a gift. Alex had taken her to have her hair done. She was lying in bed when I arrived and Alex said she would probably rest the whole time I was there. Instead she asked him to help her sit up in the living room, which he did, and for the next two hours she and I conversed about a whole range of subjects. She was more lucid than I have ever seen her. 

She told me about her life. I learned that her husband was in the Navy for 30 years. He was often deployed when her three boys were little so she was a single parent in some respects. She had three boys under the age of five in 1963. She was an assistant of some kind at the Chula Vista hospital, which is now a nursing home. She was a midwife before that in the Philippines, but she said midwives were not allowed in the US at that time. We talked about that for a while. I told her that midwives are allowed now and that more and more families are opting to use midwives now. She seemed interested and encouraged to know that. I told her about having my baby at home with midwives. She thought that was good if the pregnancy was normal. I assured her mine was. 

She talked about Parkinson's and what it is - a disease that impacts nerves and muscles. She would talk about it in onebreath and in the next say, "I can't complain. I've lived 83 years. That's long enough." She made me smile when she said that because she was so accepting of her situation, and so humble about it. I told her I was impressed by how long she had lived and how she had raised three fine sons and had lots of grandkids now. She thanked me. I asked her if she had any advice. She said, "Just enjoy life. Don't take life too seriously. Enjoy it." She added that moderation was a good idea. :)

She asked me about my family so I told her about my son, who is sixteen, and about my wife and her work. I told her about my mom and dad. She asked if my dad was in the military and I said yes, he was in the Air Force. I was able to show her photos on my phone which she liked. I showed her my son's prom picture, and she complimented his girlfriend and her beautiful skin. 

She told me about her son, Patrick, saying "He's always making jokes. He doesn't take life too seriously." And of Alex she said, "He's so understanding and kind." She just thinks the world of him, both of them. It's touching to see. 

She kept touching her hair and saying how Alex had taken her to the salon. She loved that. I think it gave her energy and made her feel good about herself, like she was able to sit up in the living room and talk to me instead of lying in bed. She said Alex would take her back in six weeks, which seems like a good idea. But she liked it so much, I would take her back every week. It really makes her happy.

She told me her birthday is October 18 but she is happy living to age 83. She feels that is long enough. She feels she has had a good life. It has been a gift.

Toward the end of my visit, she was just sitting quietly and seemed to be nodding off so I called to Patrick and he helped her back to bed. Another volunteer showed up just as I was leaving. I was glad that Alex was having a night out.

I admire Mrs. G. She does not shy away from the reality that death is coming. She knows it and she seems to be at peace with it. She even said at one point that she had peace inside herself. She has no real aversion to death and I think she welcomes the chance to be free of Parkinson's. She is brave and kind and she was a delight to be with. I am so grateful for the opportunity to know her and to get to know her family a little bit too. What a lovely family. They are a gift to me. I continue to be humbled by their strength and endurance. I know Alex is tired and yet he is always kind and gentle.  

I often think of them throughout the week and it gives me pause. I will stop what I'm doing and pray for them, and remember that life is a gift. I turn my attention more to what is right before me instead of hurrying around and trying to accomplish more than is reasonable in a day. I do not want to spend this gift in a frantic state, always rushing and pushing to get through this phase to the next one. I want to take Mrs. G's advice and just enjoy life. In moderation. 

Death of Another Kind

"The crisis of death in a family forces sudden, complicated and far-reaching decisions on those who are now responsible for arrangements. We are faced with a bewildering array of options at a time when we may be least capable of making appropriate decisions. Sometimes differences of opinion arise within the family that, although understandable, add an extra burden to the already difficult situation." (Faithful Living, Faithful Dying, p. 132)

The above quote was written in reference to the death of a beloved family member, but it very well could have applied to the bishop's staff as of late. Recently we have been reeling from two losses of another kind - death of congregations. Of course these deaths took place while the bishop was on vacation. Our staff has navigated the waters as best we could, and has done a fine job, but it certainly is true that death forces a crisis. Sudden, complicated and far-reaching decisions must be made and the decision-makers are not always the best equipped to make them, just by nature of the shock. 

One congregation's passing was well expected. We had discussed it time and again during executive council sessions. In fact the sale of its property was on a list of goals for the year.  Just this week the paperwork has been signed and the deal, and death, is final. Far from feeling celebratory, most feel the weight of this decision as sadness, and the end of an era. 

Two members of our staff attended a secularization service at the property, along with about six members of that congregation. They said the grief of the church members was tangible. We are an incarnational people. Places have meaning. We gather weekly in the same location to worship, pray, and be together. We raise our children in these sacred walls, and we celebrate the high and low points of our lives in church buildings. Of course their sale brings incredible sadness and feelings of loss. 

A second congregation's death was not completely unexpected, but its timing certainly was. In a swift move, the clergy person led a group, albeit small, away from the Episcopal Church to a splinter group. While certainly within the right of the church members to depart, it is painful nonetheless. It placed the diocesan staff in a bit of a tizzy. Decisions had to be made about Sunday services, property care, the removal of ashes from the columbarium, working with the remnant, listing the property for sale and paying the bills until then. This work has been greatly assisted by trusted and trustworthy clergy members who reside nearby. Without them, the work of the bishop's office would have been tripled, if not quadrupled. We are so fortunate to work with so many great people who understand our role as caretakers of dying traditions. Perhaps not dying, but changing. Church as it was is certainly not a viable option for today. 

All in all, the staff has pulled together with volunteers outside the office to manage these two coinciding deaths. We have had our challenges and minor conflicts, but we are emerging on the other side, looking ever forward to the future and what God has in store. And we have hope because we know that God's plan is unfolding, as we each play our small part. 

Betsy's Assisted Suicide

I just read this provocative post by a local author who helped her sister die using California's new end-of-life option. It had big photos of her sister, in a wheelchair, with a big smile on her face. 

She looked about my age. She's my demographic: white female in her 30s or 40s. In fact she didn't look too different from me. Maybe this is what made the article so powerful. I could not stop thinking about how her diagnosis - ALS - which she received in 2013, could just as easily have come to me. She looks like a beautiful, healthy, young women. Why should she be afflicted with this cruel, degenerative disease?

From the article I learned that she was very clear about her desire to end her own life before allowing the disease to run its course, saying, "I don't want to live out my life paralyzed, eating through a tube in my stomach and communicating through a machine. I'd rather be free than entombed in my body." That certainly seems reasonable to me. 

She chose to drink the lethal dosage of drugs and go to sleep on a bed of white linens on her favorite hillside at sunset. Just before, she hosted 30 of her friends and family members who helped celebrate her life with music, booze, photos, pizza, tamales and laughter. She gave away her personal items, calling them "Besty souvenirs." It seemed like a celebration of her life and a quick, peaceful end, rather than a long, drawn-out death with lots of sadness and wear-and-tear on the family and friends. They could remember her in her final lucid moments, laughing and talking with loved ones, instead of hooked up to machines, captive to a merciless disease. 

This story punched me in my gut. I cannot shake the feeling that Betsy could as easily have been me and that I agree with her decision and if I were in her place, I would make a similar call. 

I'm also cognizant of my own charges: two patients who are in their 80s, simply waiting to die. They have no hope of recovery from their terminal illnesses. Doctors have given them 12 months or less to live. One of them is DNR (do not resuscitate) but the other is full code (she wants every lifesaving measure to be used in case of emergency). I do not understand these points of view. My role is to be a supportive, nonanxious presence, and not to judge. I would never reveal my thoughts about this issue to the family members I am serving, but I do witness a sliver of their pain and exhaustion. Every day is full of caregiving -- feeding, bathing, toileting, cleaning up bodily messes of all kinds. It's like having a newborn, except an adult's body and bodily secretions are more potent, and the elderly generally are not as cute. So each day is a trial, from start to finish. 

I suppose that there is wisdom in this long, drawn-out process. The adult children of my two hospice patients will be relieved when their parents die. They will regain their own lives, able to go where they want whenever they want. 

But if I were in Betsy's situation, I can definitely see why she would want to take control of her destiny and end on a high note. Illnesses can drain a family of resources, energy and goodwill, while reducing the patient to a helpless dependent, unable to function without round-the-clock care. By ending her own life, Betsy released herself from her failing body and she released her family from months or years of suffering and medical bills. Even though it must have been hard, her suicide seems to me the better choice. 

Theologically, I think suicide could be considered an act of martyrdom. We are responsible to God and to neighbor. We are not isolated beings; we are made for community. We are relational. A terminal patient consumes thousands of dollars per day - money that could be used to treat patients with better prognoses, or to feed hungry children. So one could reasonably end one's life on behalf of one's neighbor.

Furthermore, the technology age brought the ability to extend life indefinitely. Prolonging a life with machines, especially a life that has no hope of recovery, is a new phenomenon that exists outside of all concepts of life and death as expressed in scripture. Physician assisted suicide is an outgrowth of people not wanting to be caught up in a futile extension of life. It is an appropriate, humane response to our technology-crazed medical culture that views an acquiescence to death as losing a competition. In reality, assisted suicide is the reasonable answer to a culture obsessed with prolonging life at all costs. 

While the Episcopal church has issued a formal statement against assisted suicide, I think it is high time for the church to reconsider. Perhaps this is a resolution for the 2018 General Convention in Austin.

Medicalizing Mortality

I watched a couple of YouTube videos featuring Atul Gawande, a surgeon, writer, speaker and public health researcher. The ideas that follow are his. 

The two big unfixables are aging and dying. Many doctors are afraid of talking to patients about these problems as well. 

Seventy percent of Americans say they would prefer to die at home, but nearly 70 percent die in hospitals and institutions. Ninety percent of Americans know they should have conversations about end-of-life care, yet only 30 percent have done so.*

Physicians often hold out hope ("If you take the chemotherapy, you could be playing tennis by the end of the summer") to manipulate patients into standard procedures. In reality, they inflict therapies on people that shorten their lives and increase their suffering. And this is done out of an inability to come to good decisions. 

We have politicized these issues so much that we are gridlocked and cannot even have conversations between doctors and patients about end of life. We need to start having conversations with our loved ones, with our physicians, about deeply held personal values and what matters most at the end of life before a serious illness occurs. 

The week you are most likely to have surgery in your life is the last week of your life. You receive all of the pain, suffering, cost of surgery without receiving any of the benefits. 

If we knew  a patient's last week of life, we could make better decisions. How do we become competent in recognizing the possibility of the end of life?

We have added 30 years to average life expectancy in the 20th century. The average American lives 79 years mostly thanks to improvement in public health and managing early childhood diseases. A dramatic consequence is that the elderly used to die in their homes (1940s and 1950s). By 1990, 80 percent of Americans die in institutions, mostly hospitals and second most common, nursing home. Most Americans spend over one year in a nursing homes at the end of their lives. 

Medicine has drastically changed. We have treatments and drugs for every possible disease. Twenty-five percent of our medical spending is in the last year of life, mostly in the last month. Pain, depression, confusion at the end of life have all increased, while the amount of expenditures have skyrocketed. We have had a 50-year experiment with medicalizing mortality, as though mortality is a condition to be fixed. 


Notes                                                                  

*Hospice Foundation of America

Here are the videos I watched: 

https://www.youtube.com/watch?v=VRkr09ZMI3w

https://www.youtube.com/watch?v=4kEsEYG9OUg 

My Own Death

This week, Mrs. G was resting when I arrived so I sat by her bed. When she stirred I talked to her a little. I read her some Mary Oliver poetry which she seemed okay with. I stopped when she started knocking on the wall. I asked her about where she was born in the Philippines and she told me a little about the islands. She asked who I was and why I came so I told her I was there to visit her and love her and to give A a little break. We talked about how great A was, what a good son. She started repeating the last line of everything I said, which I assume is a symptom of her condition(s). So I started reciting the 23rd Psalm, and when I did, she grabbed my hand and held on tightly. I pulled up another Psalm on my phone and read another one slowly so she could repeat the lines. She held my hand in both her hands for over an hour and we just said Psalms. When she got tired, she stopped speaking but she still held my hand. I continued to read her Bible verses that were comforting and encouraging. A came in and said he had dinner ready for his mom. She didn't want to let go of my hands! He noticed and said she only holds on to someone like that when she feels very safe and secure. That made me feel good. I kissed her and told her I would be back to visit soon.

This was the most connection I've been able to make with Mrs. G since I started volunteering two months ago. She really seemed to absorb the words I was reciting like a dry plant sucking in water. It felt like the words were a lifeline for her, a light in the darkness as she lay in her hospital bed, only somewhat aware of her surroundings. I try to imagine what this part of life is like for her. Her mental faculties seem to come and go so I feel at a loss when I do this exercise, but I do feel that the spiritual words are sustenance for her. Whether it's prayer, poetry, psalms or other bible verses, she appreciates the thoughts and beliefs I know she has as a devout Catholic made manifest on my lips. 

I told her that I pray for her throughout the week and that I light candles for her in church and she said I was very nice and kind to do so. She appreciates the ritual and outward signs of religion that are important to so many Catholics. 

As I try to imagine what this must be like for her, I cannot help but think of my own inevitable death. What will incapacitate me? What will have me lying in a bed, just waiting for the end? What will I think about if I am able to think? What will fill my days? Is there anything I can do to prepare? It's not like I can practice. I'll be an amateur.

Will I be scared? I will probably be frightened or terrified. I imagine everything I have been will come up in front of my mind's eye. I will seek comfort and reassurance. I know of a few things that will help me. 

One will be thinking about my family and friends, about the love I have experienced -- given and received. It will help me to think about my work and my vocation because I value that so much. I will consider the beauty I have been privileged to know and the beauty of this world. I am sure that no matter how many years I will have lived, I will not want to part from the miraculous wonder of this earth. To not experience the freshness of morning, the beauty of plants, the rhythmic majesty of the ocean, the love of pets -- that will be hard to leave trusting that what comes next can even hold a candle to what I have known here. 

I have always been on a search for the meaning of life. I have studied the world's great religions and there is one scripture verse that give me great peace as I have casted about for meaning, purpose and direction: 

Micah 6:8 "He has told you, O mortal, what is good; and what does the Lord require of you but to do justice, and to love kindness, and to walk humbly with your God?" (NRSV)

This is the whole purpose and aim of life. To walk humbly with God. Not to sit and reflect forever on angels and rainbows. To engage in life, to walk, to move through it actively WITH our God. What could be more of an invitation to participation? What could be a greater privilege and purpose? 

I have always felt God in my life, giving me direction. I have felt purpose and guidance as the ground under my being and the air I breathe and the days I move through. I cannot know what my own death will be like, but I hope when it comes I still have this knowledge, deep in my being, of God's presence with me. For that is our whole purpose - to be with God and to be aware of it. What a gift!

How to Prepare for the Loss of a Parent

The work of caring for a dying parent is exhausting. It is important to prepare for your loved one's death prior to a serious illness so that when you are doing the daily tasks of caregiving, you can rest assured knowing your loved one's estate is settled and everything will click along as it should when he or she dies. You are likely to fare better throughout the process because of your peace of mind. You will not be forced to make important financial decisions while handling the physical, emotional and spiritual separation from your loved one. Here are some ways to prepare.

1. Discuss and Arrange Funeral Plans in Advance: Funerals can cost $10,000 or more, and advance payment is often required. Life insurance policy payments can take a month or two to arrive. To pay for the funeral, you must either save the cash ahead of time or have credit available. Purchase cemetery plots in advance. Pay for cremation up front. Discuss preferences with your loved one and do it when death feels far away for the best results.
2. Acquire Forms and Legal Documents: Acquire government documents for notifying the government about your loved one's death. You may need to close bank accounts, investment accounts and other financial accounts. Fill out as much of that paperwork ahead of time as possible. Paperwork is not something you will want to handle when you lose someone you love. If you are in charge of the will, you should obtain a copy. If a lawyer is handling the reading of the will and the dispensation of property, find out what they need from you.
3. Pre-write the Obituary: If you want to run an obituary in a newspaper or online news outlet, contact them ahead of time to find out what is required. Obituaries can be written ahead of time as well. Find out the details about your loved one's life. Where did they go to school? When were they married? What was their career? What were the important dates in their lives? Answer these all in one document so you can easily submit the obituary when it is time. Select a photograph to accompany the obituary ahead of time and have a high resolution (1MB or larger) digital copy for easy sending. 
4. Prepare a Will: Prepare a written will that indicates how property will be distributed at the time of death. It is revocable and subject to amendment at any time during your loved one's lifetime. A will must be signed by your loved one and witnesses. 
5. Prepare a Living Trust: A living trust provides lifetime and after-death property management. It allows you to avoid probate court which can be a lengthy and expensive process. If your loved one is disabled by accident or illness, you can manage the trust property as the successor trustee. As a result, the expense, publicity and inconvenience of court-supervised distribution of the estate can be avoided. The important thing about trusts is that they must be funded to be effective. This means you have to put your large assets into the trust to receive the benefits of avoiding probate court and controlling what happens to your property after you are gone. Another drawback is that it is more expensive than a will because it requires the help of an estate lawyer. A number of estate lawyers are members of the Episcopal Diocese of San Diego and in the past have offered discounts for their services. Expect to spend $250 minimum on a living trust.
6. Set your Phone and Mail to Lower Volume: Use the Do Not Disturb feature on your iPhone to avoid unwanted calls from people not in your contact list offering condolences, or from businesses trying to capitalize on your inheritance. Ask a trusted friend to handle your mail for a couple weeks. Ask him or her to pay your bills that may arrive, and to pick up the mail. It's not a huge task but you may fall behind in a time of grief and you don't want to incur late fees. Everyday life can be difficult after someone dies, so help with the little things can make all the difference. 
7. Ask for Help: Be creative in asking for help. Ask people you know who are knowledgeable about these subjects. Use any employee benefit program for free consultations with estate lawyers, or others who can guide you. Google words you don't understand or "how to _____" when you get stuck. 
8. Pray: Ask God for guidance in settling these matters. In our complicated world there are many considerations, but in the end we are all God's children and God wants us to be at peace, not stressed about the details. Pray and ask your friends and family members to pray for you. You will be amazed at how much this can help.