The Unexpected Role of Family Caregiver

The caregiver role begins gradually.

Traditional caregiver roles are expected. Caregiving for a friend after surgery, a newborn infant, or an elderly relative with a broken hip isn't a surprise.

Caring for someone with Alzheimer's disease (AD) is rarely traditional or expected.

Like the incremental appearance of symptoms in the early stages of Alzheimer's, the role of an Alzheimer's caregiver begins in a gradual and unexpected way.

In the beginning, you make sure your person isn't confused. You use reminders like, "I'll meet you here in five minutes, okay?"

Later, memory joggers are replaced with surveillance. You keep watch so your person stays with you in a crowded place, or doesn't eat something inedible at home.

Duties grow so slowly, that the increase in care can go unnoticed until eventually, each day is spent watching or assisting the patient. You become a constant caregiver without planning on it, maybe without even realizing it.

Alzheimer's Caregiving is Difficult, and Different

Often, the person with Alzheimer's doesn't understand that they need assistance. They may become annoyed and angry with you.

Family and friends who aren't involved might not realize the extent of required care. Believe me, it's hard to explain why your 75-year-old mother-in-law needs assistance when she appears fine to casual, infrequent visitors.

Unless you tell relatives and friends, no one will understand your situation — at least, not until a significant event makes it painfully obvious. (Like waking neighbors in the middle of the night, or causing a scene in public.)

I want to point out that long-distance coordination of hired help, nursing aides, and serving as a liaison between the patient, doctors, professional facilities, and family members is caregiving, too. Long-distance care is especially hard when the illness is Alzheimer's.

Anyone responsible for the care, feeding, dignity and health of someone else is a caregiver. It is very important work.

Alzheimer's caregiving is a unique situation.

Try to Alleviate Caregiver Stress

It's important to pace activities for everyone's sake.

Alzheimer's will touch the lives of everyone involved.

Caring for an Alzheimer's patient can be physically, mentally and emotionally draining. Intense caregivers (more than 20 hours per week) cope with anger, guilt, frustration, discouragement, worry and social isolation. Caregivers can feel taken for granted by family members who don't help.

It's important to recognize these stress factors and reduce them. How? One way is to create a routine. A routine soothes the caregiver and the patient. It can make getting through the day a little easier.

Another thing that helps is joining a support group. Don't hesitate to ask for help. There are dozens of online support groups, plus face-to-face sessions. Find the number for your local Alzheimer's Association at http://www.alz.org. Call them to learn where and when support groups meet in your area.

While you have the Alzheimer's Association on the phone, ask about the Caregiver's Day Out Respite Program. For no cost, with caregiving for your patient included, you can arrange a day away for yourself.
It's important not to forget your own health while caring for someone else. Don't wait until you're exhausted to try alternatives like adult day care.

Ready for Good News About Family Caregiving?

A study reported by the Mayo Clinic, showed positive effects for the families of caregivers.
The study found adolescents in families that lived with a caregiver of an Alzheimer's patient:

1. Bonded more with their mothers (usually the primary caregivers);
2. Spent more time with siblings;
3. Had greater empathy for older adults;
4. Tended to choose empathetic friends who would understand the challenge of living with someone with Alzheimer's disease.

Alzheimer's will touch the lives of everyone. Please share your information, get frustrations off your chest, and take a break. It will make you happier in your unexpected role as an Alzheimer's disease caregiver.