Monday, August 26, 2013


 This morning, I went walking alone on the beach. I’ve been taking long walks almost every morning since I got Pat in the board-and-care facility. It’s part of my plan for catching up on self-care.  As I set out, the sun was shining, kicking up glitter from the surface of Morro Bay. But in an instant, a billowing wave of fog rolled through, chilling me, obscuring the landscape. Pat’s disease has been like that. One moment, we were fine, living our middle class lives; the next, we were enveloped in a fog of unknowing, loss and fear. But you know all that from these essays. What I want to write about here is the strange process that brought us back to California, that saved my sanity and made Pat’s life better.

A few months ago, at a battered but well-loved coffee house in Santa Fe, I sat down with a friend to figure out my finances and goals. In particular, I wanted to determine what it would take to get Pat back to California. It was around the same time that the hospitals were saying that he needed to go to a nursing home, while the nursing homes were saying he needed to be in a hospital. What actually happened, of course, was that he came back to our house again. Even though the doctors knew I could no longer take care of him.

A local Hospice stepped in with the first miracle, using Pat’s dramatic weight loss this year to legitimate their involvement. Hospice workers make miracles. They calmed Pat down when nothing short of big doses of drugs could reach him. They got him showered and shaved without resistance. They even provided a harpist to come and play for him. And while she played, his face opened up, he listened intently—the old Pat came back. Hospice bought me time to get a plan and resources together.

When I met with my friend, she told me to look at online crowd funding as a way to raise money for Pat’s long-term care. I’d had conversations with friends in California about a fund-raising event for Pat, but the long-distance logistics were impossible and no one had time to spearhead it for me. So I let the idea slide. But online fundraising—that I could do.

I went with, because you can get all the money donated (minus a percentage for the website and for PayPal, which manages the donations), whether or not you hit your target. There are lots of others—compare them for yourself if you’re interested.

And you may well be. Caregiving is phenomenally expensive. Have I already said this? Residents in long-term care facilities can easily go through all their savings and most of their assets in just a few years. The fortunate ones provided for themselves in their working years by paying for long-term disability insurance. Medicare covers some things, but your beloved has to be hospitalized first. People without assets can get their state’s version of Medicaid. I think I’ve mentioned that the application process is not for the faint-hearted.

So fund raising--events, campaigns or crowd sourcing--is a viable addition to the mix. Since I’m a grant writer by profession, the thought of it was not perhaps as repellant as it might be to some. Still, I procrastinated; not at all keen on asking family, friends and strangers for money. We believe so strongly as Americans that we should do it all ourselves, both physically and financially, when it comes to caring for our spouses or other family.  “My family, my burden” is our motto. We’re individualists to the death. But please, consider asking for help before that, because who’s going to take care of your beloved if you kill yourself trying?

Here’s what happened when I finally got the nerve to post Pat's FundRazr campaign on Facebook:  Some people actually gave money. They gave a large amount of money--$1,000, $500, $200, $50. I was astonished. 

And then a friend who doesn’t have a lot of liquid assets contributed to the campaign by opening a bank account for Pat’s benefit. She sent a letter in the local paper in our former hometown. The editor printed it with a nice picture of Pat. Deposits to the account skyrocketed. Then someone who neither Pat nor I knew, who lived on the other side of the world, in fact, sent a check for $10,000. When our friend called with the news, I burst into tears. I knew that the long struggle to discern whether or not we should go back to California was over.

Strangers paid forward the prosperity that they had received and we came home. An appropriate place for Pat, near his beloved Pacific ocean, appeared within two days of our arrival. This, after I’d fruitlessly sought long-term care for almost a year in New Mexico. Friends here opened their homes to me. I returned to New Mexico and got the house packed, cleaned, repaired and painted—skilled workers turned out to be just a call or two away. Amazing grace.

As a caregiver, you live by miracles; you live with their absence. You learn to hold on, because if you don’t, you’re not the only one who will drown. And you also learn to let go, because you have to, because you eventually discover that it’s not all up to you. For a month before these miracles came, I heard a voice in my prayers every morning. It said, “Let other people help you.”  I began to look at the ways in which I’d resisted help, even if it was just a negative rejoinder to someone’s attempt to cheer me up.

Let other people help you. The gift of caregiving is that you discover your own limits. You come to the dark edge of what you know, what you can do and you give up. But not to emptiness, not to the death of all hope. You reach out and take hold of a miracle, because someone asks, “What can I do to help? Could I go grocery shopping for you? Could I help you clean the house?” And you say, “Yes, thank you. That would be wonderful.”

It’s an act full of wonder, a seedbed for miracles, this saying yes to the kindness of others. 


  1. One gives a gift, a very beautiful gift, to people ( be they family, friends or just fellow humans) when one allows them to help. I am blessed whenever someone gifts me with a change to help or assist them! That has been a hard lesson for me to learn when I am on the receiving end. I have to remind myself to be generous and give others the gift of helping!

  2. Connie - I love reading the way you write your life out in these posts. I hear your voice in the sentences, and I can even see your smile and your tears when you describe them. I like to think of this as another miracle, another gift, just getting to know in clear details what's going on with you and Pat. Thank you for writing; thank you for reminding me of that simple truth about asking for help. Love you!

  3. Thanks for these comments. It's inspiring to read what people have experienced in this act of receiving.


I welcome comments on the content of this blog, especially stories from other husbands, wives and sweethearts caring for spouses/partners with dementia. It's a hard road and we need to walk with each other along the way. Thanks!