Caregiver Health

Why does stress make me so tired?

“Stress and feeling exhausted or tired are subjective phenomena that differ for each of us with respect to frequency, severity and cause,” says Paul J. Rosch, MD, president of the American Institute of Stress.

“In many cases, this is a manifestation of depression that is mild and intermittent and quite different from what is seen in patients suffering from chronic fatigue syndrome. The stress we’re talking about happens several times a day and does not affect your cardiovascular system, but your immune system. Many people who claim to feel tired are really depressed. They don’t want to hear it, but it’s a fact. And caregiving contributes to depression.

“Treatment depends on finding the source of the problem, and therapy also differs since no stress-reduction strategy works for everyone. Meditation, jogging, yoga and more are great for some but prove dull, boring and stressful when arbitrarily imposed on others,” Dr. Rosch explains.

Managing this stress, he notes, “is all about developing a sense of control. You have to list all the things that tick you off—people, situations—and put them into two categories: This is something I can’t control and this is something I can do something about.”

Caregiver Support

My husband recently had a stroke. After being at a rehab center, he’s coming home. He’ll work with an occupational therapist here. How can I best work with the OT?

Communication is key. So advises Carol Siebert, a member of the American Occupational Therapy Association and a home care OT. “The occupational therapist needs to know from the client and caregiver what has to happen in terms of daily routine and personal care. A three-way conversation could be helpful” for all to understand what the caregiver expects to do or is expected to do, the caregiver’s health conditions and needs regarding the caregiver’s work schedule.

It’s important for you to express your own goals, says Siebert. “It may require a conversation between you and the therapist alone, without your husband in the room. That helps for formulating goals and prioritizing. Home healthcare has to be goal-identified, from what your husband and you identify as priorities. I strongly urge caregivers to advocate for their own needs. The process is about improving the situation for everyone involved.”

Care Recipient Health

My dad has Alzheimer's and I've recently noticed he has trouble swallowing when he eats. Is this common?

Dysphagia—the umbrella name for swallowing disorders—occurs in later-stage Alzheimer's when "the deterioration of tongue, throat, and voice-box muscles and sensation interferes with swallowing coordination," says Robert W. Bastian, MD, founder of the Bastian Voice Institute for Voice, Swallowing, and Airway Disorders in Chicago.

There are, according to Dr. Bastian, noticeable warning signs: "Frequent coughing during and after drinking or eating, or a ‘gargly' voice" are chief among them.

Dr. Bastian does offer some remedies. "Be sure he eats with attention and vigor. Also, choose food carefully. In many cases, thin liquids [should be] avoided; thicker liquids flow through the throat more slowly and give more time to respond and re-swallow. And," he adds, "consider patient positioning; many swallow better with their chin tucked down toward the chest, as though gazing at one's belt buckle." Also, coaching can help. Dr. Bastian suggests you encourage your dad to "optimize the eating experience: ‘Swallow again, Dad. Let's sip a little juice next.'" The right kind of attention is a potent ally.

Communication

My mom has early-stage dementia and it’s becoming unsafe for her to live at home alone. My husband and I think it’s best for her to move in with us, but how can we be sure? What should I consider before approaching her with this idea?

“Find a way of talking to your mom about it in an extended dialog,” says Gary S. Moak, MD, president of the American Association for Geriatric Psychiatry. “Wait for the opportunity. [When] she brings up something like ‘It’s hard to get around,’ ask what she would think about living with you.”

It is, however, just as vital to consider all sides of your plan. “Concerns about safety are important, but that’s only one value,” explains Dr. Moak. “Independence is a high value as well. This move could leave your mom depressed and resentful. There may be community-based home health services that could improve her safety at home.”

The other vital link in this decision is your mom’s doctor. “Is her impaired safety related to problems that might be treatable?” asks
Dr. Moak. “Getting the doctor’s opinion could be useful in actualizing this transition.” Finally, he suggests that “getting geriatric mental health professionals involved may help Mom move to a position of more acceptance.”

Finance

I applied for Social Security disability almost a year ago, and I was told my hearing is still pending. Are there any shortcuts or ways to deal with such a delay?

“The number of Social Security Disability Insurance (SSDI) cases—more than 2.5 million a year—and the time it takes to make a decision have never been this high in our history,” admits Mark Hinkle, national spokesperson for the
Social Security Administration in Baltimore.

The administration, says Hinkle, has been “underfunded for six years; the average processing time for a hearing is 497 days. Depending on the case and your location, it could be two or three years, because claim decisions are made by state agencies.”

The best advice: Stay on top of your claim at every phase. “When you first file, we need a complete history of hospitalizations, doctors and tests—as much information as is possible,” Hinkle says. “If you haven’t had updated testing, we might set up updates with doctors. Sometimes people don’t comply, which causes more delays. Going to our doctors is a necessity.”

As for hastening the process, Hinkle points out that “dire circumstances, such as your health or financial situation taking a turn for worse, need to be brought to the attention of your local Social Security office. If there’s a change in your condition or if a new test is done, get that information to us right away.”

Legal Issues

I don’t have any family or close friends, so to whom can I assign powers of attorney?

“You should start to think in terms of professionals who may be available and willing,” says Vincent J. Russo, an elder law attorney practicing in Westbury, NY. “You could ask a trusted financial advisor, a lawyer or an accountant.”

Another possibility, says Russo, is to “have your assets placed into trust and have someone you might see yourself relying upon named as trustee.” The trustee situation is not perfect, however, because “some things may come up that a trustee has no control over. For instance, a trustee can’t sign an income-tax return. Power of attorney allows those kinds of powers.

“Sometimes,” Russo adds, “people will say, ‘I’m not a hundred-percent comfortable naming a [power of attorney] agent, but if I did become incapacitated, then I would.’ Some states have a ‘springing’ power of attorney. That means, when you sign it, the agent you name does not have authority to act for you immediately, only if a triggering event occurs, or ‘springs up.’ You would list what the events might be.”

Travel

My nine-year-old son has cerebral palsy, but I want him to enjoy summer vacation like healthy kids. Are camps for kids with CP, and how can I find out about them?

"Your local chapter of United Cerebral Palsy will be your best source," says Dr. Mindy Aisen, director of the United Cerebral Palsy Research and Education Foundation in Washington, DC. "They will know what other children have done locally and what has or hasn't worked well. They also can put you in touch with other parents."

Along with specialty camps, she adds, "an alternative is to send your child to a camp that is principally designed for children without developmental difficulties. It's been my experience that not-for-profit programs usually make accommodations for kids with developmental disabilities. They put an extra counselor in the cabin to help the child be included. You'd go through your local public school for this."

Asking lots of questions about safety and how your child will be involved in activities is key. "It's a great sign if they're open to your visiting during camping season," says Dr. Aisen. "A child with CP is like any child. How you would you make this decision would similarly be based on word of mouth and personal recommendation more than who's got a good ad."