Supportive Care Bulletin
Helpful tips for family caregivers
May is National Stroke Awareness Month. Loss of language abilities (“aphasia”) is a common consequence of a stroke. This month we address misunderstandings and frustrating responses to aphasia. Our second article for May continues a series describing various professionals in the eldercare network. In this case, occupational therapists. Last, we feature distraction techniques for those times when a loved one with dementia gets fixated on something that doesn’t seem to make sense.
When language falls apart
One common outcome of a stroke or other brain injury is the sudden loss of ability to process language. This disability is called “aphasia” (ah-FAY-zya). Depending on which part of the brain has been damaged, the affected person may have trouble speaking or trouble understanding. Or may have difficulty with reading or writing.
Needless to say, this is frustrating—for the injured person and family members too!
Aphasia does not change intelligence
People often assume that someone with aphasia can no longer think clearly. Or that hearing is affected. As a result, those with aphasia frequently have others yelling at them. Or acting as if they have dementia. Not true! Hearing remains the same. And unless the stroke or trauma affected the logical thinking portion of the brain, your loved one is just as “smart” as they ever were.
Aphasia does affect relationships and self-esteem
Talking is how we express our personality. It’s also how we interact with those we love. Without full language capabilities, your relative may feel “less than” and withdraw. This can lead to isolation and depression.
Work with the rehab team
It’s important to engage speech and occupational therapists soon after the stroke or trauma to better understand the full impact. They will identify strengths and weaknesses and develop exercises and strategies to help your relative live fully. Don’t get discouraged! Therapy takes practice and time, but it makes a big difference.
When a loved one struggles with speaking, it’s tempting to want to “help” by doing things for him or her. Help your loved one stay involved with friends, hobbies, and activities, as well as with family discussions and decision making. You may need to get creative and be patient. But staying engaged will help the person you care for regain as much language ability as possible.
What is an occupational therapist?
Eating, dressing, getting in and out of a chair. In the course of daily life, we use many skills to accomplish even “simple” tasks. Standing up or using a fork is surprisingly complex. Nerve signals and muscles have to coordinate in a very specific order. A healthy body is a marvel!
We take these skills for granted until something interrupts our abilities. Arthritis, for instance, can make it hard to grasp a fork. A stroke may require a right-handed person to learn to do things with the left hand. The tremor of Parkinson’s can make dressing a challenge.
Occupational therapy can be used to help your loved one
- remain at home despite a chronic condition;
- recover from a surgery or other health event;
- relearn specific tasks or activities.
Occupational therapists have special training to help people overcome new challenges with the daily tasks of living. A therapist might show your loved one some exercises for better coordination. They might recommend special equipment or supplies. Maybe all that’s needed is a rearrangement of furniture in the house. Or a slightly different approach to doing the same thing.
Occupational therapy can be provided at home or in an outpatient clinic. It usually starts with a home visit. The therapist will
- watch your loved one perform various tasks;
- evaluate the home for safety and convenience;
- recommend exercises and/or home modifications;
- consider best options for transportation;
- develop goals based on your relative’s abilities, interest, and budget.
Participate in the visit if you can. That way you learn what might help your family member live to the fullest in spite of limitations.
Ask the doctor for a referral
If you think your loved one would benefit from knowledgeable guidance, ask the doctor for a referral. Occupational therapy is covered by Medicare. Also by Medicaid and most private insurances.
If the person you care for has a problem with memory loss (dementia), you may find that he or she gets agitated about things that don’t make sense. Your long-retired dad, for instance, may wake up in the mornings and insist, “I have to go to work!” It can be confusing for you. And annoying!
Disregarding these comments will only make your relative more determined. And it’s pointless to try to reason. The disease has robbed that ability. Instead, spend some time connecting with your loved one in “their reality,” and then distract them.
Your body language, face, and tone of voice speak volumes. People with dementia still perceive respect versus dismissal. If you need time to calm yourself, make an excuse to get something from the car or to go to the bathroom, so you can return refreshed
Validate their concern
“Gosh, Dad, I see you are ready to go. I wish I had your enthusiasm about work! Is there something special at work today?” By joining in their emotional reality, you are not telling them they are wrong. They feel reassured you understand.
Engage them in a fond memory of something related. “Remember your first client back when the business was new? What was it they had you do?” As you reminisce, consider walking together into another room to shift their attention. Once in the other room, draw on their forgetfulness and eventually offer an alternative activity: “I’m hungry. Let’s have breakfast” or “Oh look at that messy walkway! Would you sweep it? That would really help.”
If your relative obsesses on things that don’t make sense, look for triggers or the underlying meaning. If Dad associates morning with time to go to work, have a task for him to do that addresses that need—in this case, to feel productive.