Caregiver Connections
Helpful tips for family caregivers

Genetic testing for Alzheimer's

These days, most everyone is wondering if they are likely to develop Alzheimer’s disease.

If someone in your immediate family has been diagnosed with the disease, you might feel at especially high risk.

There is a test for an Alzheimer’s gene (APOE4). But it’s not 100% certain: Not everyone who has the APOE4 gene will get Alzheimer’s. And not everyone who has Alzheimer’s has this gene variant.

Should you get the test? Since there is no cure, how would the outcome affect you? Here are some questions to consider:

What would you do differently?

If you tested positive for the gene, what would you change? For instance:

• Diet and lifestyle changes may contribute to lowering your risk for Alzheimer’s. These same changes might also lower your risk of heart disease and diabetes. Would you be willing to make these changes without knowledge of your Alzheimer’s risk?
• Would you work longer and save more against future medical or caregiving expenses? Or would you retire earlier to make sure you have time for all those activities on your “bucket list”?

Who would you tell?

• Are you emotionally prepared to handle a positive result? Consider other stresses in your life. Is this a good time to get tested? Do you have support?
• How might your family react? Will it change your relationship with your partner? What about with your children?
• Do you want your boss, insurance carrier, or doctor to know? Once the results are in your medical record, they may be difficult to conceal. This could affect your getting long-term care, disability benefits, or life insurance.

To test or not to test is a very personal decision. For support, consider seeking the advice of a genetic counselor. You might also check out an online community of people at www.apoe4.info who have tested positive for the APOE4 gene.

When caregiving ends - Part 1

Waves of emotions
When a person you’ve been caring for dies, you are likely to have many feelings. Sometimes conflicting feelings. You may find that emotions wash over you unexpectedly, arising suddenly like a wave, and then subside. This is a normal part of life after loss.

• Grief can be described as a combination of sadness and love. Your sadness may manifest in tears, in physical pains, in fuzzy thinking, in sleeplessness, or in oversleeping. Expect your sadness to retreat over time and on no specific schedule. The memories of love will remain.
• Relief is another common emotion. Relief that your loved one is no longer struggling. But also relief that you no longer need to focus so intensely on their care. It’s not disloyal of you. It’s very human to feel a sense of release, even gratitude, that this chapter is over.
• Guilt may also arise. None of us is selfless, kind, and loving at all times. We do the best we can. As you reminisce, forgive yourself for any lapses. Instead, acknowledge all that you were able to contribute.

The tender first year. There will be many “firsts” in your initial year after caregiving: first holidays, first birthdays. And if your loved one was a spouse, the first anniversary without them. As you cross these milestones, be prepared for a strong welling up of emotions. Expect this vulnerability—it is normal—and be gentle with yourself.

Overwhelm. If you find that it’s hard to get up in the morning and go through the day for a period of two weeks or more, talk to your doctor. Although depression might seem “normal” for the circumstances, it does not need to go untreated. It may be that a support group, talking with a therapist, or medication can help you through this rough leg of your journey.

How Parkinson's affects communication

If the person you care for has Parkinson’s, you may be surprised to discover the many ways the disease hampers communication.

Voice problems alone affect 60%-80% of people with this condition. Low volume and slurred speech may make it hard at times for you to grasp what your loved one is saying. He or she may be slow to respond. Or words may tumble out very quickly and somewhat jumbled. Misunderstandings and frustration are common. Fortunately, both of you can take steps to help offset communication issues.

Facial masking. The face has 43 muscles. Their movement gives us expression. But Parkinson’s restricts facial muscles just as it restricts leg and arm muscles. The result is a stiff or “blank” expression. Typically, such a look indicates anger, boredom, or sadness. But with Parkinson’s, none of that may be true. Ask your relative what he or she is feeling about the topic you are discussing. It may be far from what their nonverbal cues are “telling” you.

To minimize problems:

• Aim for one-on-one conversations or small groups
• Choose a quiet room with few distractions and sit near each other
• Encourage your loved one to take a deep breath before speaking
• Don’t rush. Wait to give your relative a chance to respond
• Listen patiently. Pressure to perform will make speech more difficult

Try speech therapy and singing. A speech therapist with special Parkinson’s training can provide facial and voice exercises. Ask in particular about an LSVT “Loud” program. Named for the Parkinson’s patient it was designed for, Lee Silverman Voice Treatment helps people recalibrate their impression of what “loud enough” is. The speech therapist may recommend helpful devices such as a portable voice amplifier, or singing as a fun way to practice breath control. Singing in a group also provides an opportunity for socializing, accomplishment, and fun!