Tag Archives: hospice

God-caregiving-cancer

Lessons from caregiving

During my friend Jim’s illness, we received many cards expressing care and concern; and then after his death, condolences. I recently came across one of the condolence cards. The message read:

I know Jim was/is a good man…a good friend and is sorely missed. But for you a great source of comfort must be what a friend you were to him.

 “What you do for the least of my brethren that you do unto me” really resonates—not that Jim could ever be considered the least but he was/is a beloved friend who needed help and you certainly gave it.

 You also deserve and I’m sure will have a high place in heaven when you meet again. Thank you for a wonderful lesson.

I had read this note six years ago, but reading it now, the last line caught my attention and I felt invited to a deeper understanding of my taking care of Jim.

For me, being a caregiver meant thinking of Jim first. When asked about anything else, I would say, “Right now, my focus is on Jim,” while gesturing with my hands to show my tunnel vision.God-caregiving-cancerI was committed to giving Jim as much independence as possible and letting him make as many decisions as possible.

I had learned this lesson from my mother. When I was a child, my Uncle Steve came to live with us when he got cancer; my mother cared for him until he died. The sacrifices she made for him, her brother-in-law, showed me what caregiving was all about.

Similarly, when my dad had a major stroke, my mother honored his wishes not to go to the hospital. We called in hospice, and my dad spent his last three months of life at home.God-caregiving-cancerSo, what I did for Jim was what my mother modeled for me. I was certainly not thinking of any lesson; I just did what I could for him. Only recently have I started to consider the magnitude of my caring for him.

The cancer in Jim’s brain weakened the right side of his body. Early on, he said, “I guess I have to become a lefty.” For most of the time he was sick, I was his right hand—bathing, dressing, shaving and feeding him. We walked up the stairs in tandem—his right foot resting on my left.

Jim was both very private and very proud. He did not want anyone else to help him. When he started to fall (one of the signs of end-stage brain cancer), it could take me up to forty-five minutes to get him up because he had so little strength to help. Once he was up, I would flex my biceps and joke that I was going to challenge Arnold Schwarzenegger to an arm-wrestling match.

Taking care of Jim was physically demanding; knowing that he was going to die soon was emotionally taxing; and putting his needs ahead of mine was spiritually enriching. So many lessons in one experience.God-caregiving-cancer

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weakness-strength-vulnerability

Through weakness to strength

“… sharing our weakness and difficulties is more nourishing to others than sharing our qualities and successes.” ~Jean Vanier

Safe spaces can be our comfort zones, those places that can give us a sense of control and security. Safe spaces can also describe the people we can trust with our deepest selves.

I recently read a book written by a friend about her volunteer work at a hospice. She wrote about some of the other people involved in the program—the Catholic sisters who ran the hospice, other volunteers and those who were dying. She wrote of the poverty of those dying, and she shared that this volunteer work had touched her and changed her.

What she did not describe, though, was what specifically had been touched in her by those who were dying—what inner poverty or brokenness connected with the poverty and brokenness of those who were dying.

Putting words to our wounds can be difficult, and it can make us feel vulnerable. We get plenty of practice saying, “I’m fine,” and much less practice admitting when we are not. Finding safe spaces where we can share openly and honestly can be a challenge.

As a young adult, I mistakenly shared my story with people who were not trustworthy and who used it against me. Then I retreated into my safe space where I shared with no one.

But at some point I realized that what I was calling a safe space was really just a place of fear, and staying there kept me from facing my wounds and allowing God’s love to heal me.

I was fortunate to find a therapist who helped me see that by staying locked in on myself I was neither safe nor free. I needed to step out of that space and start finding true safe spaces where I could name my weaknesses and difficulties.

Attending Adult Children of Alcoholics (ACOA) meetings helped a great deal. Sitting among others who had similar backgrounds created a foundation of trust. Once the foundation was established, trusting and sharing became easier.

weakness-strength-vulnerability

Living in l’Arche helped, too. I had gone there thinking I was going to help others, but God showed me that I was called me there to receive help more than to give it. The invitation of the Beatitudes and of l’Arche was to reveal my poverty—to myself as much as to others—and be blessed by it. By acknowledging my weakness, I came to understand that I was totally dependent on God.

God continues to invite me into deeper relationship so I can know my broken places, hidden crevices that are awaiting God’s healing touch. That touch releases me from my fear of being judged and allows me to speak of my vulnerability.

Like my friend who wrote the book, I went to l’Arche to help others but realized I was the one who was to be helped. My brokenness is my blessing and allowing others to see it is my healing.

weakness-strength-vulnerability

Holding on and letting go

On my recent retreat, we prayed with Luke 24:13-35, the story of the two disciples walking to Emmaus. Jesus joins them, but they do not recognize him. As they near their destination, they say to Jesus, “Stay with us.”

christ-appears-on-the-road-to-emmaus-large

As I prayed with this Gospel passage, those words jumped off the page, Stay with us. I repeated the phrase again and again—Stay with us—and pondered how I invite Jesus to stay with me.

And then, as often happens in prayer, different words came to mind. Stay with us became Don’t go. The message is similar, but the words seem more insistent. Don’t go.

My friend Ted was on hospice at his sister’s home in Portland when I last visited him in January; he was nearing the end of his life. We shared memories of our thirty plus years of friendship, prayed together and planned his funeral Mass. It was a lovely visit.

On the day I was to leave Oregon, the day I was to say good-bye to this dear friend, he said to me, “Go, catch your plane, and I’ll see you in heaven.”

Go. The word touched something deep within me, and I began to cry. Ted’s sisters were in the kitchen, and I ran to them and shared Ted’s directive. “He told me to go,” I sobbed.

Don’t go is what I wish I could have said to Ted. Don’t leave me. Stay with me. But it was not to be. I did leave that day, and a week later, Ted died.

Then I thought about my friend Jim’s last days. Two days before he died, he also told me to go. “Go, be with your sisters,” he had said.

My sisters had driven in from Michigan the previous day; it was the first time I had seen them since Jim got sick nine months earlier. Jim’s directive for me to go and be with them was a shift. During his illness, he always wanted me to stay with him. Don’t go were the words I had become accustomed to hearing. Stay with me.

Another memory stirred—from the last days of my father’s life fourteen years ago. The hospice nurse had called me and said my dad was “ready to go,” but that my mom was holding on. “You have to come home and help your mother let him go,” she had said to me. I bought a plane ticket and flew home the next day.

My mother disagreed with the nurse’s assessment; she felt she had let go. But while her words were telling him it was okay to go, her whole being was saying don’t go. When she was finally able to let him go, he died within an hour.

These days of retreat helped me look at holding on and letting go, of staying and going. I came away with a profound sense of gratitude for all that has been and a renewed­­ hope for what is still possible.

 

 

 

Hurry Home

Fifteen years ago today, Jim’s dad died from cancer. Jim had taken some time off to be with his parents during those last weeks of his father’s life. He and his mother were with his dad when he died, at home and in peace.

Two years ago, when Jim was sick, we spent a lot of time on this anniversary talking about his dad’s death. “He was not afraid to die,” Jim remembered.

Soon after we marked this anniversary, Jim’s brain cancer spread to his spine. His legs began to weaken and then he began to fall, repeatedly. It was frightening to see Jim’s condition worsen every day and to watch him decline.

I looked up “end stage brain cancer” to see what the symptoms were; Jim had them all. We knew this time was coming, but at that moment of awareness, I remembering being overwhelmed with sadness.

One day, as we left the grocery store, Jim said, “I wonder if any of the people walking by me know I could be dead in a month.”

Sad, sad, sad.

And yet, from the day of his dad’s anniversary, we both had a strong sense of his presence with us.

I don’t think Jim had realized it at the time, but during those final weeks of his dad’s life, Jim was learning how to die. When he was facing his own death, he remembered his dad’s dying, and his dad’s example gave Jim strength. If was as if his dad was coaching him, encouraging him. “You can do this,” I imagined his dad saying to Jim. And to me.

I most strongly felt his dad’s presence in moments of exhaustion and frustration, when I doubted that I could lift Jim after he had fallen or help him up the stairs when his right leg was not working. In those moments, I felt his dad encouraging me, assuring me that I could do this for his son.

As much as I felt God’s approval, I also felt Jim’s dad’s approval. He was with us through those difficult days. The line between this life and the next seemed a tenuous one.

Near the end of Jim’s life, we marked my father’s death anniversary—March 25, the feast of the Annunciation. It was a day Jim would have liked to have died. On that day, he had the sense my dad was reaching down for him, trying to pull him into heaven.

I am certain that both of our fathers welcomed Jim into heaven.

Now Jim’s mom is on hospice care, and I can almost hear Jim whispering to her, “Hurry home, mom. We are waiting for you.”