Caregiver Tip of the Month

By Joan F. Peters, Esq., Executive Director
National Aphasia Association

When I tell people I work for the National Aphasia Association, I usually get a blank look. Then, when I describe the condition, over and over again I hear, "Oh my father had that. He couldn't talk after his stroke. I didn't know that's what it was called."

Aphasia is a condition that usually results from stroke or other brain injury. It damages parts of the brain involved with communication. People with aphasia have trouble expressing themselves and/or understanding what others are saying to them. Many people with aphasia also have trouble with reading and writing. But, their thought process is the same as it was before. It is as if there is a short circuit in the brain between the ability to think and the ability to use language; people with aphasia are literally trapped inside their own heads. Because they have a hard time making their needs known, they can become frustrated, isolated and depressed. Aphasia affects about 25-40% of stroke survivors, or more than 1 million Americans.

It cannot be cured, and there is no pill yet to make it better. Working with a speech-language pathologist is often effective, but insurance and Medicare coverage for speech therapy is becoming increasingly limited. To make matters worse, even though aphasia is relatively common, many people with aphasia are discharged from the hospital with little information about how to live with it. (One study found that a significant percentage of spouses of people with aphasia lacked a basic understanding of the condition.)

Yet there are simple steps that spouses, caregivers, friends and relatives can take to further communication and make the condition less devastating:

• Many people with aphasia say their aphasia gets worse when they are in a stressful or pressured situation. Give the person with aphasia time to finish his/her sentences. Even if you think you know what they are going to say, wait until you get a clear signal that your suggestion would be welcome.

• Be sensitive to background noise and turn off radios, TVs, appliances. Keep your voice at a normal level; shouting will not help. Group conversations and family dinners can be difficult for people with aphasia.

• Try using pictures, gestures, writing, and facial expressions. The important thing is to get the point across, not that one's speech be perfect.

• Use yes/no questions to check that the person with aphasia has understood you. (But make sure they are using "yes" and "no" appropriately; some people with aphasia will say "no" when they mean "yes," especially right after their stroke).

The National Aphasia Association (NAA) provides information for people with aphasia, caregivers and others on its website www.aphasia.org; or you can call toll-free (800) 922-4622 to order information packets. The NAA also publishes The Aphasia Handbook: A Guide for Stroke and Brain Injury Survivors and Their Families. The neurologist and author Oliver Sacks, MD, calls the Handbook, "an essential resource for people with aphasia and their families."

Our visitors ask ...

Q. Where can I find more information about living wills, powers of attorney, etc.?

A. Most people should prepare 4 separate advance directives, each one of which has a different purpose:

• Will

• Durable power of attorney for finances

• Durable power of attorney for health care

• Living will

The best place to start is the Advance Directives page in our companion website, Today's Seniors. Each of the articles described on that page have been prepared by Nolo Press. For 35 years, Nolo has published the most reliable do-it-yourself legal and business tools available.

You may also want to talk with an attorney who specializes in elder law. Check the yellow pages in your local telephone directory, or go to the National Academy of Elder Law Attorneys' web site at www.naela.org. On their home page, you'll find a link in the upper left corner (just below their logo) that will help you locate an elder law attorney.

Daily Living Solutions

— products for seniors —

As we grow older, it often becomes difficult to use many everyday products because of arthritis and other conditions. If you or a loved one needs a little help – or a lot – we've selected a group of practical and affordable solutions from our affiliated merchants to help overcome those limitations.

Whether you are looking for yourself, or to help an elderly senior continue living in their own home, you'll find a wide variety of supplies and accessories – raised toilet seats, safety rails, incontinence supplies, large-handle eating utensils, pain relief, diabetic supplies, pill splitters and crushers, big-button telephones, canes, walkers, rollators, wheelchairs – and much more.

Everything is sorted into convenient categories in our Solutions for Seniors section.

Caregiving – Finding the money for care at home

A variety of resources can help pay for care at home. We discuss these resources in some detail in our article 12 tips to help you find money (and free resources) for care at home.

Caregiver Tip #2

— Medicare drug plan deadline extended (for some people) —

For most seniors already covered by Medicare, May 15th is still the deadline to enroll in the new prescription drug plan and avoid paying penalties for the rest of their lives.

However, for low-income people who qualify for extra federal help for their medication expenses, the government has extended the penalty-free enrollment period to July 31st. Generally, to qualify for extra help,

• their annual income must be below $14,700 ($19,800 if they are married and living with their spouse), AND

• their resources must be below $11,500 for an individual ($23,000 if they are married and living with their spouse).

Our advice – Don't take a chance. Seniors should be enrolled before May 15th. Their application for extra federal help could be rejected.

Continue reading about getting help with Medicare prescription drug plan costs

Our visitors ask ...

Q. My dearest friend is trying to care for her mom. It is turning out to be the most difficult thing in the world for her to do for many many reasons. It is killing my friend, while her mom is manipulating and demanding. What can I advise my friend that will help her outside of nursing homes, and other logical ideas?

A. Unfortunately, many parents who were loving in their more youthful years turn into manipulative and demanding people when they grow older. This can be due to a variety of things. For example, older people frequently become angry (often bitter) because they can no longer physically do things that, until now, they've been able to do all their lives; they resent their inabilities and often take out their resentment on people who try to help them.

Various medical conditions can also be the underlying problem. Mini-strokes, while usually undetected, can damage the parts of the brain that controls our emotions and our ability to deal in a civilized manner with other people. That often causes older people to become extremely selfish and inconsiderate. Small vessel disease of the brain and dementia can produce similar results.

A treatable medical condition may also be the source of these problems. Memory loss, confusion, incontinence and depression are not normal aspects of aging. In many, if not most cases, these are treatable conditions. (They could very well be the result of prescription drugs interactions or drug side effects.) Failure to identify these conditions as being treatable could place elderly patients at risk of unnecessary functional decline.

What should you friend do next? I suggest that she read our article on Elder Care – First Steps.

Next, you and your friend should browse other areas of our Web site, particularly the checklists, to determine what type of living arrangement may be most suitable for her mother.

And, your friend should also consider hiring a home health aide every so often. Most home health agencies have a 4-hour minimum; this can give her a much-needed break to do things that she needs to do for herself – even if it's just going out to dinner, seeing a movie, or simply taking a long soaking bath.

Finally, you can help by just being there for your friend. She will need someone to help her through this phase of her life.

Recommended Reading and Videos

Many excellent books and videos can help guide you through the caregiving process. For our recommendations, including a brief description of each one, click here.

The material on this site is for informational purposes only, and is intended as a supplement, not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. More