Strength and Devotion
Sometimes in life, we encounter people who face immense life stressors, and somehow, they keep going; they rise up and address the nightmare. They inspire us with this superhuman strength and courage. These people also often demonstrate devotion that transcends all else in their lives while the rest of us can only stare in awe. When we see what these people do, we think that if it was us, we would fold. Nowhere is this more often on display than in a Hospice service. As a Hospice volunteer, I interact with ordinary people facing devastating circumstances and horrifying conclusions. More often than not, they address their terrifying situations with strength and devotion, nothing short of miraculous. I find many lessons in how people survive and thrive in the presence of devastating diseases. How they face the relentless march of death toward a person they value and love is instructive.
Imagine for a minute that you have been told that your spouse, sibling, parent, or best friend will die within six months. Furthermore, as their primary caregiver, you will be assaulted daily with situations you never imagined in your worst nightmare. Add to that there will be nothing you can do but accept the inevitable and work tirelessly to keep your loved one as comfortable as possible until death. When that death comes, you are told, they will likely be unrecognizable for the ravages of the disease in its final state of triumph over your loved one's life. Following the death, you will likely face overwhelming grief, loneliness, guilt, and worry that you did not do enough to keep them comfortable. You will recall with sadness that you occasionally became frustrated and impatient.
Imagine that. Really think about it.
Do you see yourself surviving? Do you see yourself rising to the occasion? Did you cringe? Did you imagine that your life would just end? Were you even able to go there in your mind?
The scenario above doesn't even include the absolutely debilitating treatments that go on for months, possibly years, but fail to save your loved one before they enter Hospice.
Every week, I spend time with people who live what is described above. Day in, and day out, they care for the person they most love in the world. They change diapers, give bed baths, administer medicine, and spend hours on the phone with doctors about pain meds and other treatments to keep their loved one comfortable. They live in a constant state of alert, tuned to their loved one's suffering. At times they imperil their own health due to exhaustion and stress. They do this knowing that there will be no happy ending, knowing that there is a clock counting down and there will never be enough time. These people invite me into their homes and into their hearts, and into their devastating reality.
The surprising and miraculous thing is that most family caregivers I have visited are not paralyzed or openly despondent. They are remarkably well-adjusted and show tremendous strength, resilience, resolve, and courage. They have a laser focus on their loved one's needs and their expressions of love for them. Sure, they admit to having moments of sadness and even anger. Still, they are not hindered or zombies on autopilot. They almost always express great appreciation to those volunteers, professionals, and friends who help them care for their loved ones. Given what they are going through, these are astonishingly emotionally stable people.
“In this part of the story I am the one who
dies, the only one, and I will die of love because I love you, because I love you, Love, in fire and in blood.”
On one occasion a patient's wife walked with me to my car as we talked about how she was doing.
"Jim is so thin. He really is wasting away. I can't believe he has anything else to lose," she says with a pensive look at the ground and then a glance up at me. The hospice nurse told her it would be another week or two before her husband died. He was no longer eating and was bedridden, but he still took fluids.
A squirrel runs across our path, and we both startle and then laugh. It breaks the tension as we arrive at my car. I turn to her, hold her shoulders with my hands, and look her in the eye.
I gently tell her, "He is going to get thinner. He will likely look almost frightening. It does not mean he is uncomfortable or in pain. And he will still be your husband, the man you fell in love with all those years ago. It's how it goes with these diseases. It will take a lot his flesh. But I want you to remember something. It can never take your love for Jim or his love for you. It can't touch that. You get to keep that. Hold on to it tightly over the next few days."
She looks up at me and smiles through watering eyes, "That's lovely. Thank you for telling me what to expect. Hospice people always tell it like it is. I think that's the right thing to do."
I nod. She continues.
"He loves your visits. Thanks for spending time with him."
She is smiling at me, and I desperately try not to cry. It is heartbreaking to imagine what she is going through. She hugs me and turns to amble back to her front door. I watch her and think to myself that she has also lost weight. I am glad she has a live-in caregiver for the final stretch. These next few days will be hard.
I see this a lot. Folks who are bearing up under terrible pressure and are not hiding from reality. They, instead, want the truth about what is coming. They rise to the awful occasion and want to face it head-on. This is remarkably well-adjusted. I often put off facing mildly difficult situations, as we all do. But with these family caregivers, most of the time, I see a desire to embrace the full knowledge of their harsh reality, even though it, frankly, is horrible. Perhaps it is because they know how short time is for their loved one.
“Tell your friend that in his death, a part of you dies and goes with him. Wherever he goes, you also go. He will not be alone.”
Many times the matter-of-fact way that families deal with their devastating situation surprises me. But none gave me pause as much as one patient's wife. Priya is always smiling and grateful, and positive. She practically lights up the room with her positive can-do energy. It is a joy to watch her greet her husband when she returns from taking her aging parents to their many doctor appointments. Then she is out the door at the same time I leave. When I ask where she is going, she says, "Oh, I have to pick up my four-year-old from school. Thank you so much for spending time with Hari." I was only vaguely aware that she had a child. I had assumed she had help with that.
At night Priya will do the remaining work for her full-time job with the county. It seems like a typical busy existence. At least the way she behaves, it all seems normal.
It is far from ordinary.
The patient is her 43-year-old husband, Hari. He has advanced trauma-induced brain damage and dementia. He has regressed to the stage where his four-year-old has more cognitive capacity than he does. He requires constant care for all aspects of his life and physical needs. There is no hope for recovery. He has been like this for two years already. Priya has cared for Hari, her four-year-old, and her aging parents for over 730 days! I don't think I could last a week.
Priya is not bitter; she does not display anger or impatience. She is sometimes overwhelmed with all she has to do and is constantly scrounging around for volunteers to help her with Hari. She is always kind and grateful. I am amazed at her strength, at her smile. I'm also in awe at her ability to think about everyone, including the Hospice workers.
"You have to eat something, you've been here for four hours! You must be hungry, here, my mom made this," she insists as she pushes a homemade samosa toward me. Priya has just returned from taking her parents both for medical appointments. Now she is caring for me! On the other hand, she is balancing a laptop as she listens in on a Zoom meeting for her work.
On another visit, when I leave, she walks me to the door, and I ask how she is doing.
"Honestly, I'm terrified. I am so scared. Sometimes, I start shaking and I can't stop."
And yet, Priya continues to care for the three generations living in her home. She continues forward despite the fear. That is true courage. I can't help but tear up when I think about her situation. It seems like too much to even comprehend. And yet, this is her "normal." She is on a painful, terrifying journey, yet she keeps moving forward.
On my way home after a visit with Hari and Priya, I soon turn to think about everything I have to do. There is a document I have to complete for a client, my hospice visit notes to submit, a teenager to wrangle, and dinner to prepare. I feel stressed and overwhelmed and honk at a slow driver in front of me in frustration and hope for a vacation soon. As I complete the thought, I realize that Priya has no time to breathe, let alone for a vacation.
“And one has to understand that braveness is not the absence of fear but rather the strength to keep on going forward despite the fear.”
Research shows that most people in the US want to die at home, not in a facility. Sometimes family caregivers can't care for their loved ones, and they can't afford or don't have the space for full-time in-home care. They have to let go of the notion of being the primary caregiver; they have to entrust their loved one to the care of professionals. But the harsh fact is that the family caregiver doesn't usually get a break. They end up trading the physical labor of caregiving with guilt that they could not do enough. On top of that, they sometimes have a long commute to see their loved ones. The husband of one of my patients displayed transcendent devotion in the trek he made to see his beloved wife.
Ansel's wife, June, had late-stage Alzheimer's. She was a shadow of her former self, but they both lit up when they saw each other. June had taken a bad fall at home, and since Ansel could no longer care for her physically, he was forced to move June to a nursing home about an hour from home. He commuted to see June every day.
The day I met Ansel and June at the nursing home, I got lost, as I always do in these facilities. When I stopped a nurse to ask where the room was, she pointed down the hall and said, "Just follow the harmonica music."
Sure enough, there were reedy chords streaming from down the hall. I followed the tune to a room with a tall but ancient man standing over an equally elderly and tall woman who lay in bed smiling at him. He gestured and rocked to the tune as he played. When he was done, he spoke to his wife in a highly animated voice, "June, sweetie, we have a new visitor." He looked back at me expectantly, with a strange kind of focus.
When I introduced myself, he shuffled over and stuck out a hand a little below where mine was. I corrected and grasped his hand for a firmer handshake than I expected. We spoke for a while about the schedule and the things June enjoyed, music being a big part of her life. Meanwhile, Ansel kept his wife in the conversation with explanations and questions for her that he usually answered.
As we discussed, when I would come for visits, I learned that Ansel made a long trip every day of the week.
Suddenly he startled and asked, "What time is it?" But before I could fumble my phone out, he reached down and fiddled with a wristwatch as he raised it close to his ear. The watch spoke the time in that tinny, reedy tone that is the way with tiny speakers.
"My ride will be here," he exclaimed. He leaned over and kissed Jean tenderly, "I'll see you tomorrow, my love."
He waved to me and said he would occasionally see me when our times overlapped. He then lumbered to the door, reached behind it, pulled out a white cane used by the visually impaired, and tapped his way out the door and down the hall.
I later learned that Ansel had been blind for five years due to severe macular degeneration. Hence the ride. He took paratransit to the nursing residence and then returned to his home the same way. And every day, he played his harmonica for the love of his life. He told her everything happening in the world, and that home was quiet without her. He visited without fail.
I was not there on the day that June died. I had business at the facility a couple days later, and I ran into the day nurse who cared for June. She was there when June died and told me what had transpired. Unfortunately, Ansel arrived a few minutes after June breathed her last. The nurse stared into space as she told me, "He cried and seemed to accept that she was gone. When I hugged him and told him I was sorry for his loss, he said something that really hit me hard. He said, ‘I know she's gone. What will I do tomorrow.' And I thought, wow, I hope I have that someday, what June had. I'd give anything to have what she had."
And I think that nurse was correct. June had the ultimate. Even though she was ravaged by a terrible disease, she had something few people experienced. She had the total, uncompromising, unconditional devotion of another. I often see patients blessed with this focused, single-minded commitment. I think this is because a time limit is imposed on them and their loved ones. Love is all that matters. The time left is fleeting, and it is marked like an hourglass by the visible ravages of the disease on the patient. Every day is a reminder that time is short.
“In the depth of winter, I finally learned that within me there lay an invincible summer.”
When I see patients, I also form relationships with their family caregivers. I often see a strength that inspires others and devotion that transcends despair. From the blind husband who commutes across the valley daily to see his love and play music for her. To the woman who works a job while caring for three generations (including her seriously ill husband), and still has a smile on her face and gratitude in her heart. These super caregivers are determined to ensure their loved one's last days are filled with love, care, and meaning. I am in awe of the fortitude, faith, strength, and devotion that exists alongside their longing for more time.
I admire these people who know the crushing end that is coming, marching inexorably to that last breath. I have to stop and consider in reverence the people who soldier on despite the inevitable heartache. These people who let go when they want to hold on tighter are superhuman.
I see this kind of family caregiving as a fire that either forges a person of unimaginable strength and fierce determination or burns them up. The vast majority of families I come to know in this work rise to the occasion and are made stronger. It seems to me that this is something that is part of us. We are designed to care for our dying. I take comfort in this, and I have hope for us as a society as we find our way back to accepting and being around death.
Finally, I think that, in the end, a reason for this burst of strength and devotion that family caregivers experience is that time is so short. It brings to mind the same thing we see in patients, nothing short of a transformational sharpening of focus on only what is truly important. We all know what our priorities should be: our relationships, expressing our love for others, and our spirituality. But we seldom follow our hearts. It seems to take the weight of death to force us to focus on what is truly important. It takes the shortening of our time with loved ones to cause us to dig deep for strength and to immerse ourselves in the waters of devotion. But it really does not have to be that way. We can all stop and face the fact that we will all die and lose some of the people we love. And that likely will not result in debilitating depression but, instead, in renewed strength and devotion.
Addendum
We know this capacity for strength and devotion is in all of us. And we shouldn’t wait for the specter of loss and dire life circumstances to tap into those abilities. It is important not to shy away from the reality in which we live. We are all mortal. Not only will we die, but the people we love will die, some of them before we do, leaving us bereft. If we live a little closer to that knowledge, it may be possible to be a little stronger and show a little more devotion.
There is a hit song by Tim McGraw that most of you have probably heard. But I think it makes sense to look closely at the lyrics.
Live Like You Were Dying
Song by Tim McGraw
He said
"I was in my early forties
With a lot of life before me
When a moment came that stopped me on a dime
I spent most of the next days
Looking at the x-rays
And talkin' 'bout the options
And talkin' 'bout sweet time"
I asked him
"When it sank in
That this might really be the real end
How's it hit you
When you get that kind of news?
Man, what'd you do?"
And he said
"I went skydiving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named Fumanchu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denying"
And he said
"Someday I hope you get the chance
To live like you were dying"
He said
"I was finally the husband
That most of the time I wasn't
And I became a friend a friend would like to have
And all of a sudden going fishin'
Wasn't such an imposition
And I went three times that year I lost my dad
Well I, I finally read the Good Book, and I
Took a good, long, hard look
At what I'd do if I could do it all again
And then
I went skydiving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named Fumanchu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denying"
And he said
"Someday I hope you get the chance
To live like you were dying
Like tomorrow was a gift
And you've got eternity
To think about
What you'd do with it
What could you do with it
What did I do with it?
What would I do with it?
