Drugs, Part Two

Here is one of the hardest things we struggle with as spouse caregivers:  When is it enough? When have we done all we can do, fought all we can fight, intervened in the medical treatments as much as we can?

Last week, Pat entered a nursing home, not in San Luis Obispo County as I had hoped, but in Santa Ana. Oddly, it’s the city where he began elementary school, just a few miles from his childhood home in Corona del Mar. It was a defeat in my mind—four hours from where I’m living, from Chris, from our friends.  But I prayed, dozens of others prayed with me and this is the only place that would take him. Skeptics might say, Well, that’s the fault of an inadequate care system in San Luis. And they would be right. It’s not that the Santa Ana nursing home is the perfect God-given solution. But it’s easiest, for Pat and for me—at least for now.  “For now” is the watchword of all caregiving, I think.

The staff seems to be professional and certainly more engaged with Pat than some other places he’s been. They want to know what his favorite foods are, what he did professionally, what kind of music he likes, if he enjoys dogs, gardening, movies, art. Some of the questions are easy; some I have no idea how to answer now, though I could have a few months ago. But at least they ask, and that makes me feel a little confidence in the quality of care he’s getting.

Medically and physiologically, he’d doing very poorly. The doctors from Newport Bay put him on several new medications and he appears to me to still be way over-medicated. He doesn’t recognize me when I arrive—it takes some hugs and jokes and shoulder rubs before he realizes it’s me. He sits rigidly in a wheelchair, his eyes fixed. I duck down and look up into them until he focuses on me. Sometimes he smiles. He has tiny seizures every now and then. He can barely walk with assistance; just two months ago, he could shuffle around unaided.

What has happened? Is it the disease or is it the drugs?

How many anti-depressants does one person need? He’s taking three. And why is he still on an anti-psychotic when I specifically asked that he not be given any more? Why have his muscles completely wasted in the last three weeks and why does he only weigh 109 when he’s eating three meals a day plus twice-daily high protein shakes? What is going on? What?

I still ask these questions, still have the strength to be my husband’s voice in professional caregiving environments. The likelihood is that I won’t receive answers. But I believe our task as caregivers is to ask anyway, and try to refrain from despair and blame. To go on asking, to go on seeking.

The only immediate reward for these efforts may be the rare smile, the squeeze on the caregiver’s hand that lets her know the beloved is happy to hear a familiar voice, is aware that someone—even if he can’t remember who she is—is concerned. The reality is, we caregivers are never going to feel that we’ve asked the right question, done the right thing. Because in truth, no one knows what the right thing is. So our goal can only be to move in the direction of love.

In the meantime, I urge all who are involved with a dementia patient to stay alert for signs of drug reactions in your spouse or sweetheart (or any other family member or friend with the disease) and to ask the questions, even if no one has answers. Doctors who don’t know the patient’s history (and very few take the time to become well-acquainted with it) will tell you it’s the “natural progression” of the disease. Chances are, if it’s notably neurological, it’s not. If it happens very rapidly—in a matter of days—and there are no symptoms of stroke, heart attack, urinary tract infection, bowel shut-down or pulmonary disease, it’s probably a drug side effect.

As Rebecca Mead writes in her magnificent New Yorker article,

“Today, psychotropic drugs are regularly used to sedate people with dementia into compliance, and nursing-home residents who have no diagnosis of mental illness are given off-label prescriptions for Haldol, Seroquel, and other antipsychotics. These drugs were developed for the treatment of conditions such as schizophrenia, not dementia, and are generally intended for young, robust patients; when such medications are given to the frail and the elderly, they induce a lethargy that can mask symptoms of other afflictions.” (“A Sense of Ending.” The New Yorker, May 20, 2013)

One of the worst offenders is halperidol (Haldol). It’s an older anti-psychotic used extensively in hospitals and long-term care settings to control patient/resident agitation and combativeness. Its purported function is to calm the patient and help them be less fearful. However, it’s used primarily as a “chemical restraint” to make the professional caregiver’s job easier.

In a short-term setting, this can be very important, particularly when your beloved needs blood drawn for tests, X-rays for physical injury or CAT scans for possible strokes or clots. Without it, no one could get a needle anywhere near Pat this past year. But in a long-term setting, it’s given “as needed” (also called PRN), primarily for convenience and too often replaces solid professional training for the institution’s care staff. In California, it’s against the law to administer Haldol PRN in nursing homes, but not in board-and-cares, where its use is rampant.

Speaking from Pat’s experience, Haldol and other anti-psychotics creates daytime somnambulance, loss of language comprehension, severely impaired depth perception, gait disturbance, a stooped and crooked posture, inability to raise his head, increased agitation, muscle loss and loss of speech. It also impacts sleep patterns. All the anti-psychotics are implicated in reduced brain volume and loss of higher-order thinking skills.

I don’t know about you, but I think the dementias do quite enough brain-volume and thinking-skill destruction on their own. The only drugs I want my husband to receive are those that will help his remaining brain functions—relieve anxiety, calm fear, support whatever synapses are still working.

To repeat, the antipsychotics aren’t really given for the benefit of the patient (though they can prevent self-harm), but for the caregivers, both familial and institutional. I confess that I gave both Haldol and Zyprexa to Pat when he was living at home. They made it possible for him to stay out of a bad nursing home environment in Santa Fe while I made plans for us to move back to California. I’m not sorry I did it. On the other hand, I was very conservative in the dose, giving less than the doctor’s prescription.

In care facilities that allow PRN dosing, a caregiver can give a drug at anytime if the patient is shouting, is agitated when she or he needs to have clothing or diapers changed, resists eating, strikes out at others or doesn’t want to go to bed. There are other ways to handle these behaviors.

The best method I’ve found is to simply stop whatever is agitating your loved one or patient. Wait a few minutes. Talk about something totally unrelated. Turn of the blaring television set on the ward and turn on some gentle music. Let her walk around a bit, tell her a simple funny joke or offer a cup of ice cream. Step away for a while and let the person have some time alone. It’s not like there’s somewhere they have to be.

When you resume whatever it is that needs to be done, introduce yourself (“It’s Nurse Nancy,” “Honey, it’s me, Bob, your husband”), explain what you are going to do and, as you help your beloved, describe each step of what you are doing and what you want her/him to do. Move very slowly and speak very gently. Exude serenity and love. (I know this isn’t easy, but at least pretend.) Close the door of the person’s room if she is going to be unclothed for a time to give privacy. Step away again if he becomes combative.

The main thing is, don’t persist in doing what doesn’t work.

We modern Americans with our “can do” attitude and our habit of rushing from one thing to the next often make poor caregivers. I notice this especially in some young nursing assistants. They need training in slowing down. We are working with people whose brains don’t even work half as fast as our own. We can’t expect them to conform to our speed of life. Our job is to conform to theirs.

A few nursing homes and hospitals are beginning to get this. Beatitudes in Phoenix, recently profiled in the New York Times, is a national model. There are questions I now ask whenever I interview a care facility for Pat. How are your CNA's trained to deal with demented residents? Do you insist on a schedule? Use behavioral cues and rewards to modify behavior? What’s the policy regarding chemical restraints? These are critically important queries to make. They can mean higher quality of life for your spouse or sweetheart. They can save his or her life.      

As Thomas Kitwood, the British social psychologist who first promoted “person-centered” care for people with dementia, wrote, people with dementia call us “to return to aspects of our being that are much older in evolutionary terms: more in tune with the body and its functions, closer to the life of instinct.” (in Mead, op cit) We need to slow down, focus on the moment and be with our beloved rather than longing for a medical solution, for an escape from the burden of care and from the reminder of our own mortality that it brings.

No one does this perfectly. A time comes for most of us when we can’t do it anymore, at least not 24 hours a day. That’s what professional facilities and useful drugs are for. We surrender the person we love to strangers, to imperfect medical science, to a world without answers. We entrust them, at our best, to the Love that undergirds all life.

Drugs, Part One

Autumn again. Fall in California is the time of hot offshore winds, the Santanas (or as we locals persist in calling them, Santa Anas). They haven’t set in yet, but they will. The year is playing out its final act. Leaves are yellowing, farmer’s markets stacked high with red and yellow tomatoes, fall peaches, plums, pears. We used to love this time, Pat and I. Going to open studio tours, bicycling in town, driving up the coast with the turquoise glass sea on our left.

This week, Pat’s in a geriatric psychiatry hospital in Newport Beach, having his medications adjusted. He’s exhibiting major neurological side effects from the anti-psychotics he’s been taking over the past 15 months to control agitation. A sideways stooped posture, an inability to judge distance and the height or depth of surfaces he’s trying to walk across, tiny shuffling footsteps, a complete loss of comprehensible language, an inability to swallow his saliva. Chris and I drove him down to Orange County. He did better than I expected in the car, sitting patiently for four hours. He still likes to go places and notices more than I realize.

Pat grew up in Corona Del Mar, on the edge of Newport Beach. He learned to swim at Carnation Cove, sailed to Balboa Island in the small skiff his dad gave him when he was 10 and surfed up and down the Orange County coast as a teenager. He married his first wife there and it’s where Chris was born. The place used to overflow with memories for him.On the drive down to the hospital, I reminded him every 45 minutes that we were going to Newport. When we got there, I said, “Hey, Pat. We’re in your home town!” He didn’t seem to respond.

Then, as we drove down 16^th Avenue to the hospital, he said “School, school.” I had no idea what he was referring to and couldn’t see any buildings that looked academic from my side of the car. Inside the hospital, the very kind activities director, Kaj, engaged Pat. When Chris told him that Pat was from the area, he asked where he went to high school.

“Harbor High and Corona Del Mar,” I answered for him.

Kaj said, “Harbor’s right next door. You drove past it on your way here.” Pat had recognized his old high school. I was floored.

It's these brief breakthroughs that disorient caregivers. When we think that memory and recognition are completely lost, they suddenly pop up, intact. As if our beloved is on the far end of a static-filled long-distance connection that momentarily normalizes. Out of the garbled nonsense words or the silence, the person we love emerges as if he or she had been there all along, waiting. These moments keep us hopeful that a change in medications, in diet, in supplements or therapies can clear the line a little more. But that hope, being as Emily Dickinson wrote, “the thing with feathers,” mostly flutters away. 

Today, I’m offering a short quiz. If you’re a caregiver, you already know the answers. At least, I hope you do. If you hate quizzes, bear with me.

1. How many drugs are there that cure Alzheimer’s and other dementias? 

2. How many drugs are there that help slow the progress of the disease for some people with dementia? 

3. When did the last completely new Alzheimer's drug to be successfully released in the US enter clinical trials? 

4. Has there ever been a drug released that specifically targets non-Alzheimer’s dementias?

5. How many drugs are used to suppress or control difficult behaviors of people with dementia?

6. What percent of anti-psychotics administered to dementia patients are being used off-label?   

7. What percentage of these have black box warnings indicating that they may cause sudden death in the elderly?

8. How many people in the US suffer from some form of dementia?

9. How much Federal money goes into dementia treatment research? 

10. By how much is the population of Americans with dementia expected to grow by mid-century?

11. How much does dementia costs the economy each year in lost wages and tax revenue, Medicare/Medicaid and unpaid labor? 

Answers

1. None 

2. There are three. Depending on the individual patient, maybe two will work. Maybe none. 

3. 1989. Twenty-four years ago. 

4. No. 

5. Scores of them, mostly anti-psychotics and anti-depressants. 

6. 100%. 

7. 100%. The FDA warning clearly states that anti-psychotics are not for use in elderly demented patients. But they're given to this population all the time. 

8. 5.2 million and counting, twice the number of people who have or have had breast cancer.

9. Currently, $54 million, or roughly $11 per patient per year. The President's budget for 2014 proposed $100 million. The House has cut this back to $45 million, or $9 per patient. (Less than half of the $202 million slated for breast cancer research. I'm not saying breast cancer should have less, just that dementia research must have more, and quickly. Seventy-two million of us are in or entering the high-risk age bracket for this disease.)

10. Six hundred percent--600%.

11. $202 billion. (I keep harping on this number because it's so extreme) 

This is the world-o’-medicine that dementia patients and their caregivers contend with. If there were an epidemic contagious disease that cost the economy over $200 billion a year, NIH would be all over it, Congress would be passing research funding appropriations right and left and the press would be building public fear to a fever pitch. Or if the disease impacted people’s sexuality. In the last twenty years, more drugs have entered the marketplace to treat erectile dysfunction than to treat Alzheimer’s. Far more.

This pharmaceutical reality leaves family caregivers grasping for straws. Or maybe lifesavers. Alternative therapies are out there—amino acids like acetyl-l-carnitine and phosphatidylserine; massive daily doses of coconut oil; organic foods; chelation therapy, marijuana, high doses of EFAs. We’ve tried some of them. Chelation actually helped, but I couldn’t get Pat to take the huge regimen of pills for more than one six-week round and he couldn’t handle IV chelation. Coconut oil also seemed to help, but as Dr. Mary Newport notes in her book Alzheimer's: What if There Was a Cure?, people in late stage who use it may revert to an earlier more agitated stage, which is what happened with Pat. The up side was that his speech improved a little.

My advice from our late-stage vantage point is to work with your spouse as early in the disease as possible to explore all the alternative therapies, especially coconut oil and chelation and whatever supplements he/she can willingly ingest. But don't knock yourself out trying if your beloved isn't willing. Do what you can--coconut oil 50/50 with butter, for instance. Coconut almond cookies (I'll share the recipe when I get my kitchen unpacked). Or the helpful amino acids in powder form, blended in a smoothie. I do believe that we gave Pat an extra year of fairly good cognition by trying alternatives. I wish I had done more. 

All caregivers could repeat that as their personal mantra. I wish I had done more. Please don’t go there. We have almost no human guidance through this wilderness and whatever helpful thing we do is more. Whatever individual researchers can do, struggling to get grants and pharmaceutical company backing,  is more. Whatever foundations, international associations, governments and the World Health Organization can do is more.

We do need to keep our heads up and raise our voices, like the AIDS Act Up people did, like the pink ribbon breast cancer people did. Or if you’re too tired from caregiving to do any of that, just tell yourself that others will do the “more” you can’t do. And if you can, say a prayer, go on a Memory Walk to raise funds for the Alzheimer’s Association, write one letter to your Congressperson. 

You’ve done your part.

Next time: Why not anti-psychotics?

Miracles

 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 FundRazr.com, 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. 

Mysteries

(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.  

Anniversary

Today is our 12th wedding anniversary. I'm so grateful that I found and married my sweet soul mate. He's given me so much and this marriage has transformed my life. I'm glad I didn't know 12 years ago what awaited us. But I don't think it would have changed my mind. I love you, Pat Gannon.

Full Circle

Full circle, from home to hospital, three months of trying to find long-term care placement and now, unexpectedly, Pat is home again. I never thought I'd see him in our house again, lie next to him in bed, greet him in the morning with the time-honored, "Want a cup of coffee?"

It wasn't my idea. I thought we'd find the perfect nursing home or an assisted living situation in California that didn't cost an arm, a leg and a few internal organs. I thought I'd surely have found a job out there by now. I thought we'd have packed him into a motor home and safely delivered him to the place we both long to be. But that isn't what happened.

The day I brought him home, I had no clue how I would do this home caring, even with help. The alternative, however, was letting the psychiatric hospital court (yes, these places have courtrooms on site) remand him to the state hospital in Las Vegas, New Mexico. It would have been okay with me, as I've heard their long-term care ward is pretty good. But when I spoke to the case worker there, she told me that, even though I have medical Power of Attorney, am named in Pat's advanced directive, and am his court-appointed psychiatric guardian, I would have no say in his long-term care placement. Since there weren't any beds currently available at the state hospital's nursing home and he didn't need to be hospitalized any longer, they reserved the right to place him in any nursing home anywhere in the state that would take him.

If you've had experience with Medicaid-funded nursing homes in poverty-stricken states, you know how scary that scenario was.

UNM Geri-Psych had given me less than a day to find out what my legal options were. And, of course, all the senior legal assistance people said they couldn't help, given the brevity of the time frame. So, fearing that the court would side with the hospital, I asked for Pat to be discharged before the hearing took place. Our dear Cousin Molly once again stepped in to help drive Pat to Santa Fe and to get him settled a bit at home. The first night, he slept over 13 hours, as if making up for all the sleepless hospital nights.

Since then, he's been sleeping really well, eating like a racehorse and seemingly enjoying himself walking around our backyard in the warm afternoons. We breakfast, then go for a regular walk around the neighborhood, then he sleeps for a couple of hours in what I think of as the miracle chair, a recliner/rocker we got for a hundred bucks. After that, lunch and then about three hours of a combination of pacing the backyard while talking ceaselessly to himself, listening to me read, whistling along with music and, just occasionally, getting really really angry at nothing. Then dinner, another walk around the neighborhood and a gradual dropping off to sleep. Strangely, it's pretty manageable. I'm writing this while he's doing his afternoon rounds of the house and yard.

I treat it as his job, the work he does while I do mine. It's a way for him to use up energy, to get some sunshine and exercise, and to keep busy in his own way. I wish he could do a bit of actual work with his hands, sit and look at pictures or read a magazine. But my acceptance of what he's able and willing to do makes the day much less stressful.

Part of what has shifted is my attitude. This past year has been a profound spiritual voyage for me. At some point, as the result of an entirely (so I thought) unrelated support group, I began to turn my full attention to God's voice. At first, it was just a prayer and meditation time in the morning. Over the months, it's become a more or less frequent conversation with God, punctuated with moments when I haul myself out of whatever mud hole of fear and worry I've slipped into and step mentally into a circle of light I call the Presence of God. Sometimes I just breathe there for a few moments, calming myself before I resume my day. Other times, I ask questions, make requests, thank God for some tender mercy or beautiful bit of the world.

Why this helps, I don't know. I don't need to know. I find that I am cheerful much more often, that I can hold my tongue when Pat inadvertently says something hurtful, that I can be peaceful and supportive when he wakes me up in the middle of the night in a panic. I am caregiving out of choice now, and stepping out of the stress as often as I can. Even though I have less time to myself than I did when I felt frazzled and overwhelmed, I don't feel divided anymore. Taking care of Pat is my job, not something I have to do in addition to a job or job hunting. And because we went through weeks of trying and failing to find suitable placement for him, I'm fairly certain that it's the job God wants me to do right now. Not forever. Perhaps not even for more than a few more weeks. Just today.

Once of the best things about this time is that I get a "do-over." I get to treat Pat the way I wanted to before, but just couldn't. It's a living amends to him for my anger and impatience and it also is strengthening our relationship. I'd actually have to say love is deeper than it's been in some time. So as we approach our 12th wedding anniversary (July 1), there's a happiness I never expected to know again in this relationship. Full circle, indeed.

Bodies

When people talk about dementia and Alzheimer’s Disease, we speak mostly of brains, that very specific physical site where the damage is done, where speech aphasia takes place, where motor control and social learning is lost. We don’t talk much about the rest of the body. At least, not until the very last stages when the ill person’s inability to swallow, maintain weight and move about signal the rapid muscle wasting that leads to death.

But just like the rest of us, people with dementia inhabit bodies that were once young and strong. The changes in these bodies may frighten the rest of us. A mom, always sturdy and beautiful, becomes a tiny creature the size of a child with translucent hands and a compulsive need to chew her tongue. A brother, once a hulking funny guy with football player shoulders and feet the size of Manhattan becomes soft, pale, somehow absent. A husband, who once could rouse desire with a sly glance, becomes a frail stooped old guy, his lovely muscles vanished under wrinkled skin that hangs like a worn shirt from his bones.

Still, and this is what is both a saving grace and a heartache for a spouse or sweetheart, the present body of the beloved is like a sheer curtain hung over the past. We look beyond what appears at a changeless beauty in the person with whom we’ve shared such important intimate years. There is still desire in the mix of emotions.

What do we do with that longing? How can it endure the spoon feedings, sleepless nights, sponge baths and changing of throwaway diapers? I don’t know, but I know that it does.

On a website for spouses of people with dementia, I found a number of chat threads that are amazing in their searing honesty and insight. One woman asks if it’s okay for her to date someone who has reappeared from her past as her husband, confined to a nursing home, is unable to recognize her, communicate or interact. She hesitates, because she loves her husband, because they are married, because they have children and a long history together. Even her sons tell her it would be okay. Still, she’s unsure. Another woman speaks of curling up on her husband’s bed in his nursing home room, molding her body to his, so that “their bodies can remember together.”

I don’t think any books have been written for spouse caregivers that include more than a cursory nod to the issue of dementia and sexuality.  The dementia caregivers’ bible, The 36 Hour Day, spends less than a page on the issue. There are books and websites on general caregiving that say a little more. But generally the attitude is that sick people don’t have sex and the people who care for them (unless they’re perverts who prey on the weak) aren’t interested in them “that way.” Nonetheless, recent research in Great Britain shows that married couples in which one spouse suffers from dementia continue to have sex well into the mid- and even early late stages of the disease, an average of eight years after diagnosis. Surprise!

For early-onset dementia patients and their spouses, sex is an even more acute issue. As my husband sagely said, “Well, I’m still a guy.” And I’m still his woman. But when you're caregiving full-time, you just don’t feel sexy. When you do make love on those increasingly rare occasions, you’re still caregiving, because your partner can’t remember the moves. It can be pretty funny, if you let it. “No, honey, you have to lie down.” “Hey, I’m over here!” “Wrong place.” Etc. 

The trick is to be adaptable. I was going to say flexible, but that’s a different kind of sex. You have to do more, give more, take care of both his/her needs and your own more often. The reward is that you can get back that lost intimate connection, that joy, even if just for a few minutes. You can see your beloved's eyes light up, see see his/her face relax in youthful happiness and contentment. It’s worth it.

When your beloved is in a care facility, of course, sex is difficult, maybe impossible. There are usually no arrangements for conjugal visits. But being physical is still important, as much for the caregiver as for the one with dementia. The other day, I walked on to the ward where Pat has lived for nine weeks now. He saw me and his face literally shone with joy. I reached out to him and he wrapped his arms around me, held me for a long time, kissing my hair and my cheek. It was so affirming for me. Pat is still there somewhere, able to remember me and his love for me. Usually I have to say “I love you” first, and then he will say it back to me. Every now and then, he will spontaneously whisper, “I love you.” I delight in those moments.

I give him lots of back rubs because his lower back hurts almost all the time. I don’t know whether it’s disc degeneration or just the bad hospital mattress. I always hold his hand when we are walking, put my arm around him when we are sitting side by side. The other day, as I knelt at his feet helping him put on his sandals, he reached out and stroked my hair. He might have been thinking of our dog, but I took it as a gesture of affection for me.

Caregivers, don’t turn away from these opportunities to touch your beloved or to let her/him touch you. The beloved’s caress will still thrill your heart when you let it. If there is old unresolved conflict that you can no longer discuss because of his/her aphasia, loving touch is the same as forgiveness. Touch replaces words; it can even become a form of prayer, shared bodies that become a shared spirit. If you are willing to forget convention, forget our culture’s views of the elderly and sick as disembodied, if you are willing, despite sorrow and exhaustion,  to be flesh to flesh and heart to heart again.