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.  

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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!