Alzheimer's Caregivers: The Hidden Patient

When any chronic illness takes root in a family, everyone gets sick. But the one whose suffering is often equal to the patient's, and is often ignored, is that of the caregiver. Dementia caregivers in particular, often the partner, suffer physical exhaustion, emotional depletion, and chronic depression.


from Johns Hopkins Health Alerts:

Caregivers -- The Hidden Patients

Approximately 80% of dementia patients are cared for by family members. That's millions of family members who provide care for a parent or relative, many of whom must balance these duties with the demands of their full-time jobs and other family members. If you are caring for a family member or friend with Alzheimer's disease, this Special Report from a recent Johns Hopkins Memory Bulletin offers practical support and advice.

With our population aging and the number of Alzheimer's disease patients in this country predicted to steadily increase over the next two decades from 5.5 million today, the number of caregivers will have to increase as well. If you are not a caregiver already, the chances are high that you will become one at some point.

Studies that measure depression or distress in caregivers report that rates of these symptoms are two to three times higher in dementia caregivers than in the general population. Other studies reveal that social isolation and family disagreements are more prevalent in Alzheimer's caregiver families than in similar families who are not caring for someone with dementia. What kinds of emotional problems do caregivers of Alzheimer's patients have? Many experience a mixture of feelings, including frustration, sadness, anger, irritability, helplessness, guilt, and depression.

Being a caregiver for a family member or friend with Alzheimer's disease can be so stressful that doctors often think of caregivers as "hidden patients." Because caregivers are often faced with overwhelming day-to-day responsibilities, many stop going in for medical checkups, self-medicate their anxieties with alcohol, don't exercise, and eat poorly.

Not surprisingly, Alzheimer's disease caregiver stress takes a heavy toll. Caregiver stress and burnout symptoms are very similar to those of depression. They include:

• Denial . . . about Alzheimer's disease and its effect on the person affected. "I know Mom will get better. They must have made a mistake."
• Anger . . . at the person with Alzheimer's disease and others. "If he asks me that question once more, I will scream!"
• Withdrawing socially . . . you no longer want to stay in touch with friends or participate in activities you once enjoyed. "I don't care about getting together with the neighbors anymore."
• Anxiety . . . about facing another day with the Alzheimer's patient and what the future holds. "I'm worried about what will happen when I can no longer provide care."
• Despair . . . you feel sad and hopeless much of the time. "I don't care anymore."
• Exhaustion . . . you barely have the energy to complete your daily tasks. "I don't have the energy to do anything anymore."
• Sleeplessness . . . you wake up in the middle of the night or have nightmares and stressful dreams. "I rarely sleep through the night, listening to hear if Dad is out of bed."
• Emotional reactions . . . you cry at minor upsets; you are often irritable. "I cried when the grocery store was out of my favorite cereal. Then I yelled at the clerk."
• Lack of concentration . . . you have trouble focusing, and you find it difficult to complete complex tasks. "I used to do the daily crossword. Now I am lucky if I can concentrate enough to solve one quarter of it."
• Health problems . . . you may lose or gain weight, get sick more often (colds, flu), you may develop chronic health problems (backaches, headaches, high blood pressure). "Since the spring, I have had either a cold or the flu. I just can't seem to shake it."

If you're experiencing any of these symptoms, consider contacting an Alzheimer's disease support group, talking with your religious or spiritual leader, consulting with your primary care physician, or making an appointment with a counselor. Here are some good resources to consider:

• The Alzheimer's Association (225 N. Michigan Ave., Fl. 17, Chicago, IL 60601- 7633; (800) 272-3900). This fantastic group has been at the forefront of helping caregivers and supporting research for more than 25 years.

• Local medical centers. Some medical centers offer caregiver courses that teach practical techniques for managing the anxiety, agitation, aggression, and other upsetting behaviors that people with Alzheimer's disease may exhibit.

• Alzheimer's support groups. Alzheimer's support groups are great sources of helpful information, solace, and compassion. The other people in these groups will understand the complex and sometimes conflicting mix of emotions that Alzheimer's disease caregiving engenders, such as grief, anger, resentment, helplessness, embarrassment, guilt, despair, and even suicidal thoughts.

Grand Rounds at Emergiblog and Pain Carnival at How to Cope with Pain

Check out Grand Rounds at Emergiblog. It's a really good read.

For posts about pain and pain management approaches, check out the Pain Carnival at How to Cope with Pain.

Two Heart That Beat As One...Really!

From MSNBC, an article by health editor Linda Dahlstrom

Never to part: Devoted couples share life, death

"Research shows that in some cases, one person’s heartbeat can affect, even regulate, another’s, possibly acting as a type of life support.

In one such study, Rollin McCraty, research director at the Institute of HeartMath in Boulder Creek, Calif., looked at what happened to six longtime couples' hearts while they slept. Heart-rate monitors revealed that during the night, as the couple slept beside each other, their heart rhythms fell into sync, rising and falling at the same time. When the printouts of their EKGs were placed on top of each other, they looked virtually the same.

“When people are in a relationship for 20, 30, 40, 50 years, they create sort of a co-energetic resonance with each other,” says Lipsenthal, who is the past director of Dr. Dean Ornish’s Preventative Medicine Research Institute in Sausalito, Calif. “A simple analogy is two tuning forks, put next to each other. They create a co-resonant pitch. What happens when two people sleep together for 50 years? What happens when one goes away?”

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A Story:

I remember one week, early on, when I was at the height of my pain condition, Richard, my sweetie, developed a raging cold. I was feeling so fragile that the thought of contracting his cold on top of bearing my rampant pain was intolerable. We decided to keep at least 10 feet and preferably a closed door between us.

Prior to this moment, his touch was my anchor. When he put his cool hand on my forehead, the swirling pain and fear quieted. When I leaned up against him, I felt as if the universe were, maybe, on my side, at least for a moment.

We stayed apart for a day and a half. During that time, my pain spiraled out of control. I couldn't sleep. I couldn't even eat the soft pears and oatmeal that had become my entire diet. I wanted his comfort, but dreaded the contagion.

As I lay weeping in the living room, Richard phoned his brother for support. Ten minutes later, Richard burst into the room and wrapped his arms around me. As he held me and stroked my hair, I felt the pain recede. I asked him what his brother said. He answered, " F--- the f---ing cold. Get in there and hug her."

Now, that better times are more normal, this has remained one of our mantras.

The Pain-Panic Syndrome

The combination of pain medication, energy work, yoga, emotional renovation, and HBO has helped me to manage my pain so that, most days, I act and feel like a normal.

But some days, the pain resurrects. What starts as a slow ache in my lower abdomen in the morning can escalate into a of herd of wild stallions stampeding through my body by mid-afternoon. This explosion of pain can be catalyzed by an argument with my sweetie, worry about my parents' health, a change in the weather, a freak anomaly in the space-time continuum, a butterfly flapping its wings in China -- in other words, "Who knows?"

Because I, gratefully, have so many good days now, the first signals of a pain spike are enough to launch me into panic mode. I forget how many years I have dedicated to learning how to move beyond pain, to attach my consciousness to something bigger than my own measly ego, to use my mind to meditate the pain into a blue wave that flows out of my body with each breath. I forget that I have an arsenal of medications I can combine into a giant hammer that can slam any pain spike into oblivion. I forget that the pain comes, and it goes, and that it will never be as wild and uncontrolled as it was in the first years of hell.

Of course, panicking over pain only feeds it. When I panic, I constrict my muscles and my mind so the space I create around the pain is tight and tiny; and therefore every thrust of the pain is that much sharper and always hits its target.

Here's what helps when the reminder of pain starts to set off a full blown panic-pain attack.

I try to breathe consciously. To follow the path of my breath as it swells and ebbs instead of focusing on the ripples of pain. I move my breath to those places where pain grips, and I watch as each breath pries pain's fingers looser and looser.

I remind myself that -- "This is now and then was then." That this pain episode may last hours, all day, even a couple of days -- but not years. There will never again be years of relentless suffering. I am better now. And I have tools now that I could not have imagined then.

And I ask for help. I ask my sweetie to remind me of the truth I try to hold onto -- the truth that the panic makes me forget. He tells me, "This will pass. Don't worry. You know it will. Now, let's see what's on HBO."

Phenomenon of spouses dying close to each other

From MSNBC, an article by health editor Linda Dahlstrom

Never to part: Devoted couples share life, death

"Dying beside the love of your life and passing into eternity together is the stuff of legends, but it’s also a documented phenomenon among longtime couples.

Studies around the world have shown that the rate of mortality spikes among bereaved spouses soon after their beloved has died. One study published last year by researchers at the University of Glasgow followed more than 4,000 couples and found that, on average, widows and widowers were at least 30 percent more likely to die of any cause in the first six months following a spouse’s death than those who hadn’t lost a partner. Another large study in Jerusalem found the bereaved spouse's risk of death during those first six months rose by up to 50 percent.

“We see it all the time,” says Dr. Hope Wechkin, the medical director of Evergreen Hospice in Kirkland, Wash. “Often a patient will come on to [hospice] service and we find out their spouse has died six weeks earlier or so. … I think it’s about connection. For many people, their spouse represents their greatest sense of connection to this world.”

Do any of you know couples in which this phenomenon happened?

Grand Rounds is Up at Notes of an Anesthesioboist

Have a read here.

When it's Too Late to Change Your Relationship

My father has had a desperate year.

Before he turned 83, he went swimming every day and sat by the pool for hours "schmoozing" with neighbors from his condo building. He bragged that he was the youngest guy in his synagogue and therefore often had the honor of carrying the twenty pound torah scroll. He told stories about the old days -- spending his war years on a battleship in China, playing stickball on the streets of Brooklyn as a kid, running errands for a nickel for the Murder, Incorporated gang that owned his neighborhood, and meeting my mother and being overcome by her dark beauty.

This year, he has lived more in rehab facilities than in the condo he shares with my mother. He started falling. He fell four times within six months. One day he got into a car accident. He had successful back surgery to insert metal pins along his spine to brace a few fractured discs. His pain is waning and his spirit is returning. But he has 24 hour home health aide coverage and needs to be shepherded when he turns over in his hospital bed, takes a shower, or tries to walk.

His voice is now an old man's voice, hoarse and tired. It often fades by the time he gets to the end of a sentence. He remembers everything clearly but just loses interest in the details. The thought of getting back into the pool and swimming again keeps him going.

My mother is holding steady with her afflictions and her medications. She carries on with reading her mystery books and tending to the building's library. Her social network consists largely of her doctors, the doormen, and her brothers. She cooks meals and sorts through paperwork. She lets the aides do everything else for my father.

My parents orbit around each other. Sometimes they collide in affection; other times in hostility; but mostly in neutral cooperation. This pattern is no different than the one they existed within for the past fifty years.

I watch with a heavy heart. I know that they will never find a love that has at its core something sublime instead of just complacency. I see that they will never find the others hands hidden in the mountain of ashes left by their disappointments in each other.

It's too late and they are too sick to change a relationship this old.

Grand Rounds is Up at M.D.O.D.

Another great collection of posts in the medical blogosphere. Have a look at M.D.O.D.

I thank them for including my post on Caretakers.

Sarah Palin Debate Flow Chart

One of the blogs I read is Michael Krigsman's blog on Technology Project Failures. The Palin Debate Flow Chart, from one of his posts, totally cracked me up.