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. 

Friday, August 23, 2013


(The following was written in July. Pat improved with some medical intervention and by month's end, as the result of other mysteries of love and compassion, we were able to move home to California's Central Coast, where he is, for the moment, in a nice little board-and-care facility. I wanted to post this so that the continuity of our story would stay intact. As soon as I can sort out the tangle of emotions involved in our incredible homecoming, I'll write an update.)

Where does my husband go when a raging and completely irrational being leaps out at me in his body? Over lunch, we were laughing as he made a face on purpose while crunching down on his potato chips. It was a bit of humor that was all Pat. Now, two hours later, he’s making faces full of rage as I try to help him change his clothes, hitting out at me, screaming “Liar! Liar!” And when I say, “It’s Connie. It’s okay,” he looks at me with utter hatred.

It will take multiple doses of sedative to bring him down from this, but right now, I can’t get anywhere near him to administer the medication. I hide it in vanilla ice cream. I hide my fear and grief and rage in the quietest words I can muster. Underneath the words, I am outraged that I am being treated this way. But by whom? A person whose brain is almost gone? A medical system in which hospitals tell me he needs to be in a nursing home and nursing homes tell me he needs to be in a hospital? God who asks me to trust Him in the midst of this horror?

I choose the medical system. Its faceless uncaring, its incredibly stupid and self-contradictory rules, the greed of its executives that places profit before people. Pat should long ago have been admitted to a clean, caring, safe facility that specializes in dementia patients with severe behavior issues. A place where he would get one-on-one care from someone trained and skilled in this kind of nursing. He is not there, not because they don’t exist, because we are out of money. A high-quality care center costs from $70,000 to $100,000 per year. Somehow, you have to go through all the lesser stages of the disease without spending down a huge nest egg so that you can get through the final several months. Or you need the increasingly hard-to-get long-term care insurance that will take a big bite out of your monthly income, unless you are the head of a multi-national bank.

Ah, you say, but what about Medicaid? Well, the trick with Medicaid is finding a place that accepts it and is decent, clean, professional and personal. There are some. They get four or five stars on the Medicare Nursing Home Finder website. And there are many more that get maybe one or two stars. The better centers are usually full. The only way your loved one can get in is if a resident dies. So you develop a rather convoluted prayer: “Lord, let a bed come open. I mean, I don’t want someone to die so that my beloved can have a good place, but, um, you know….”

I’m hoping the soon-to-be-in-place Affordable Care Act will in fact make long-term care affordable. I haven’t heard anything about nursing home or assisted living facilities in all the cannonades of anti-Obamacare verbiage. It would be wonderful if there were to be a mandate, as there is in Oregon and a few other states, that both nursing homes and assisted living centers, the latter being far more likely to take on the challenge of residents like Pat, must accept Medicaid.

In both New Mexico and California, the smaller more individualized care centers are nearly all private-pay. Albuquerque has a Medicaid reimbursement program for assisted living or full-time homecare if the patient has first been in hospital, but not Santa Fe or the state’s other communities. In California, there are 1,500 assisted living beds in a strange mix of rural and urban counties that can be filled by Medi-Cal recipients. Fifteen hundred in a state of thirty-five million. How did that happen and how is it going to help?

The brokenness of our broken medical systems is nowhere plainer than in the world of dementia and long-term care. As I’ve said before, this is primarily because our society considers old people to be disposable and the collapse of the mind and body somehow embarrassing, an inexplicable weakness. Put ’em away somewhere so they don’t infringe on my right to pretend I’m never gonna die. And by the way, don’t take my taxes to care for them.

We live in the deathless society. Public images depict the young, the wildly healthy. We make wars that don’t touch us. We have tidy cremations so there aren’t bodies lying around at funerals. We ask the hospital to call when Grandpa is “gone.” Death is reserved for television, film, news broadcasts, where it is ghastly beyond belief and so, again, doesn’t touch us. Death is a horror show. We, the living, fictionalize it.

When you live with someone who is dying by slow degrees, or when you visit them daily in the care facility, the process of ceasing to live grinds away at you, almost as much as it erodes the person you love. Little losses point up how vast and complex the human brain is, how resilient the body.

 One day, your beloved can’t tie a shoe. It will take awhile, but a few years later, he won’t know what a shoe is. Or will he? He sets it in the fruit bowl, but he also dutifully sits down so you can put it on his foot because he really wants to go for a ride in the car. So does he know the meaning of the shoe or not?

The answer is yes and no. If the caregiver is providing context for the shoe, yes. If the demented person has to figure it out for himself, no. And this is one reason caregivers burn out. Imagine taking every act of the waking day and breaking it down into its smallest comprehensible components. Set the shoe on the ground. Lift the foot. Set the foot in the shoe. Wiggle the toes to position it correctly. Pull the tongue of the shoe up so it doesn’t wrinkle and hurt the foot later. Pull the laces tight. Tie a bow (this involves scores of steps in itself). Say, “There, now you’ve got your shoe on.” Repeat with the other foot. Move on to the jacket, the hat, the sunglasses. Do this for every act the beloved needs to accomplish in the course of a day. Repeat every day for as long as the demented person lives at home.

The mystery is this:  that so many people accept this burden and don’t cast their loved ones away.  Something like 40 million Americans are currently caring for loved ones with some form of dementia. Many others reach out to help those who shoulder the task of care. And many of us who give care have felt the buoying effect of love and prayers, even when we were beyond going on, enabling us to go on.

The thing you find in caregiving is how strong love is. Your love for the beloved, and. when he or she has a moment of clarity, his/hers for you. The love of your friends, your family. The love of total strangers, which I’ll attempt to explore in my next blog. The love of God, or the Heart of the Universe(s), that wraps you round when you really truly can’t go another day and carries you and your beloved through to the next.

This love carries you through the idiocies of the medical system, through the times of terror when your beloved attacks you and you try to imagine what it’s like for him inside his brain, through the grief that accompanies almost every task, and through the loneliness when you consider the future, after all the effort is done, the dying finished, the house empty. Love, you find, will still be there. It makes you tough, sturdy, able to pick up the life you’ve been given to live and move into the light-filled world again.