On being a caregiver

It's been 2 weeks since our son Phil died, and I may write more of my reflections (and advice to others) at my blog when they come to me. Let me first say it is a privilege to be with a loved one when he is dying, although it will be the most difficult thing you'll ever do. Phil was Phil from the beginning to the end, and although that could be very frustrating when we wanted him to go a different direction or not cause self-harm, he was also a testament to God's creative power. From the moment of our conception to the moment of our last breath, we are the same person going through stages. Jesus has ennobled our frail human bodies that get sick and die, and from here on Phil has no bounds.

When we got the call from hospice in February we were totally unprepared--we thought Phil would be continuing his chemo and battling his brain tumor. It was an ugly fight, but he was determined to stick with the treatment. The appointments were on the calendar. But with hospice, treatment stops and palliative care begins. Our weekly visit and daily phone calls turned into 24/7 care. Because of HIPAA and Phil's personality, we knew little about his treatment or glioblastoma, only what we'd been able to learn on our own. We didn't live in the same community and knew nothing about his financial situation. The national situation almost eliminated our familiar support network. And we were so wrong about so many things.

Imagine (if you are about my age) you know how to drive a car--you've been driving so long it's almost second nature. But it's becoming difficult and you no longer do the free ways and stay with the streets you know. You vaguely remember how to drive a stick shift because you learned that as a teen (or in my case, your husband has one). So, these two nice ladies you've never seen before pay you a visit, show you a 1950s era pick up truck, put you behind the wheel, and say, "Don't worry, we'll teach you what you need to know." Meanwhile you're headed for the entrance ramp to drive through the center of Atlanta at rush hour, or Chicago through 50 construction zones at night. In a pick up truck you don't remember how to drive. At every stop light, a different person climbs in the cab and reroutes you--no map, no GPS. Sometimes at night something breaks down and it takes hours to get help. Fortunately, there are some hitch hikers to pick up along the way who really do help and explain things.

If you've been or will be a caregiver, your mileage will vary; spouses have rights and relationships with the medical system, financial institutions and social networks that parents and adult children don't have. The same people who are there to help may also say, by law we can't advise you, or that's not my area of expertise.

If you are healthy now and have no worries, pause and reflect. Two days before Phil was diagnosed we'd had a birthday lunch at the Chef-o-Nette in our old neighborhood and we knew nothing about what would be coming on October 1.

The Orientation and Disorientation of Caregivers by Peter Rosenberger, guest blog

By Peter Rosenberger author of 7 Caregiver Landmines and How You Can Avoid Them

 

(Available in Kindle and Paperback from Amazon) Peter Rosenberger hosts a radio program for family caregivers broadcast weekly from Nashville, TN on more than 200 stations. He has served as a caregiver for his wife Gracie, who has lived with severe disabilities for more than 30 years.

https://www.youtube.com/watch?v=zete6PeZozA

https://www.youtube.com/watch?v=FKxgyymMy4c

“Walking into Waffle House for breakfast, I held the door for two men. The younger man awkwardly helped his older companion with a walker and oxygen tank. No stranger to these things myself, I waited for several moments while nodding to the younger man. Mustering a sad smile, he expressed his gratitude for my patience.

As they slowly exited, I stepped in—only to be stopped by one of the longtime servers. “Peter, go out there and talk to that young man! His name is Randy, and I ain’t serving you breakfast ‘til you do,” she stated forcefully.

Decades of Waffle House visits with her taught me that disobedience usually involved a tongue-lashing. And, she really wouldn’t serve me until I talked with him.

Dutifully returning to the parking lot, I approached Randy, stuck my hand out and said, “I was told to come out here and talk with you—and Judy won’t serve me breakfast until I do. What’s going on?”

Randy’s eyes instantly filled with tears while sharing that this was their last breakfast out before hospice came that afternoon for his partner. Listening, I understood why Judy sent me back to the parking lot.

I speak fluent caregiver.

Randy added, “We’ve been together for 24 years, and I am just so upset. I don’t know what to do. I’m afraid I’ll go into my room and cry—and won’t be able to stop.”

Chatting for a while, as Randy’s companion quietly sat in the car with the engine running, I offered things learned from a lifetime of caregiving for my wife who lives with severe disabilities. Giving Randy my card and sharing he could call anytime, I prayed with him, hugged him, and watched him breathe a bit easier. Returning to the restaurant, Judy, with brimming eyes, nodded her thanks and served me breakfast.

Strengthening and encouraging my fellow caregivers serves as one of my deepest passions. I understand the brutality of the journey in ways few do. I also understand that the caregiving burden borne in the gay community is all too often compounded by judgment from people of faith. People who share my faith.

Caregiving respects no sexual preference, creed, politics, religion, or race. The harshness of caregiving saves all its assaults…to wage on the bonds of love. In the face of a chronic illness or disability, that love isn’t sexual or about sexual orientation. The love compelling one person to put themselves between a vulnerable loved one and even worse disaster—is something far different and worthy of respect.

Suffering and sorrow tend to put differences into perspective. The ministry of grace vividly displayed from the cross of Christ, can flow from us without this incessant need to fix, change, or dispute those who live differently.

In that parking lot, Randy and I were not gay versus straight. Nor were our doctrines and creeds discussed. While I remain devoutly evangelical with deep convictions, I never asked Randy’s beliefs. I just saw a fellow caregiver grieving as he ministered to a suffering loved one. Randy and I have that in common.

Caregivers struggle. They deserve care—not judgment for their fears, mistakes, or even their lifestyle. No one has ever argued me into a relationship. But there are those who loved me into one.

When the AIDS epidemic crashed upon society, all too many in the gay community were shunned. In the process, a vast number suffered with a horrific disease without the comfort of Christian ministry. That tragedy can’t be undone. Yet, that same community stands in need now, as they grieve while caring for aging and disabled loved ones.

Acceptance is not agreement. In order to care for someone, one is not bound to condone a lifestyle operating in contrast to Scripture. Yet, ministering hands reached into my grief and trauma to help me get to safer ground. I would be a poor steward of that help …that grace …if I didn’t offer it to others as they journey down the heartbreaking path of a caregiver.

While I’ve learned to speak fluent “caregiver,” it’s my Savior’s native tongue.”

Work through that bad mood with a walk

At Metro Fitness today I chatted with a woman who is a personal care giver; she exercises 3 hours a day, she told me. Her client is in her 90s, still smokes, and is on oxygen. I'd exercise that much, too, if I had her job.

Creating the holiday sob story

Yesterday I heard a brief report of bad financial news on the radio (they will be on the increase until the election and then will disappear): it seems that the elderly and/or their caregivers are now dipping into their own savings to pay for their care!!!! Isn't that what you're supposed to do? Ever hear about saving for a rainy day?

Then there was this economic horror story in today's WSJ: a woman who is flying home for Christmas (Atlanta) has decided to stay home for Thanksgiving because of "soaring" travel costs. My daughter lives 5 miles down the road and I might not see her between Thanksgiving and Christmas, either. Honestly, some people just have to invent problems.

My friend Mitzi used to spend every week-end taking care of her father-in-law. She lived in Illinois and he lived in Arizona. Beat that one!