Monday, October 14, 2013
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.