LXV. The Caregiver Alone

March 24, 2011 — It’s snowing pink here in central Delaware. Tiny petals from the blossoms on my next-door neighbor’s four ornamental plum trees lining the street float to the ground like snowflakes, covering lawns, sidewalks and cars. Every afternoon around three, hundreds of honeybees come, buzz among the trees and tend the blossoms, collecting pollen to generate new plants and to produce honey; obviously a local beekeeper’s bees. The bees work for about an hour and then are gone. I’ve read where bees come out to specific plants on schedule daily, as if they had alarm clocks in their hives. I can set my clock by these many bees.

Many, too, are the comments to the question I posed for my Linkedin discussion group Women Writing for (a) Change. Our email boxes are flooded. My question: “Caregivers: What are your experiences? As a sole caregiver for my mother, 97, who has dementia, I find caregiving to be spiritually life changing, among other things.” One of the writers has posted this discussion to the news media. She says, “I can see that this is where everyone’s frustrations and ideas are suppressed and it took an intelligent person to bring it out! Thank you.” Wow.

I am blown away by the exuberant response. I am thrilled. I have thought long that these caregiving stories need to be told – not only for the caregivers but also for the suffering for whom they care, the ones who were once vibrant, leading vital lives like the rest of us, the ones who have lost their dignity, who feel trapped and that they have become burdens, the ones whose tickets have been collected, those just ahead of us in line. Scary, isn’t it. Lifeboats can sail only so far.

The outpouring of comments and loving support is due largely, I feel, to the catharsis of caregivers being able to tell their stories to likeminded, sympathetic listeners – there seem to be not just one story per caregiver, but many and varied, at once sad and funny. As a caregiver you navigate murky serpentine channels strewn with sandbars and idle vessels, all the while avoiding mutiny of the ship you are captaining.

We in our discussion group travel among loving, buoying companions with shared adventures. Here we are not alone. It is a safe port. But when in the midst of the caregiving, one certainly feels alone, no matter how many friends, relatives, and healthcare supporters surrounding one. It is intense.

You can spot a caregiver a mile off, said one caregiver in the group. It is true; caregivers have a different look, a different mindset; battle wounds that are healing, I suppose. The writer wrote a story on her blog about her mom. It is called “Last Light”. It is beautifully written and poignant. I recommend you read it.

No one gets it (not surprisingly), said one discussion group member – not a sibling, other parent or anyone else, unless they are or have been a caregiver. “Lack of sleep, driving to appointments, chasing reports and professionals, not being able to work or socialise, anticipating the needs of your loved one, safeguarding the home,” said another. “This isn’t a Walt Disney film,” she added. I’ve raised my children and this is much harder, said yet another.

These have certainly been my experiences.

Another, who is caregiver to her husband, said, “It’s one thing to do the work required and to keep up good spirits, but what I feel is so difficult is the loneliness and the lack of understanding of so many friends who think I should leave him with others and get away.”

A man in the group, who may or may not be a caregiver, commented that these caregivers make it sound as if they are the only ones doing everything, that they act as if they are all alone. Stress is a creation of the mind, he said.

So I responded that, yes, as caregiver, especially as sole caregiver, you do feel as if you’re the only one doing this – because you are: your personal and social lives are limited. You are in the middle of a cold, gray sea. It is stressful, albeit stress exists only in the mind. But through that, it is a growing experience, hopefully leading us to recognize one day that we can let the stress go and think more positively – one day; that is with patience and compassion towards ourselves. And then to move through the stress without adding to it. But, yes, have faith. Every time I’ve come to the end of my rope, someone catches me. Yet, I don’t know what’s going to happen next; I just hope that someone is there and not asleep at the helm. Sometimes that someone is me. It is a stretch, and there are times when the tension relaxes, but then another wave rises and rushes into my wheelhouse.

My friend Jackie commented on my last chapter, “LXIV. Cargiving: The Gift”: “Your gift is the talent of being able to portray your story in words and sharing it in an enlightened way with others on the same path. Thank You!!”

I am not a doctor. I do not carry a stethoscope. Yet, I, too, want to know what’s going on and how to remedy a malady. I carry a pen. I’d much rather wield a pen for enlightenment than a sword for killing.

—Samantha Mozart