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The Alzheimer's Support Network News, September-October 1998

When It's Time to Say "Uncle"

Eleven years ago I was a new mother with a beautiful baby daughter who never slept. My daughter had colic so severe that, to this day, our pediatrician's nurse recognizes her as the "cry baby." Baby pictures of my daughter show a healthy baby being held by a woman (me) who is obviously exhausted. My daughter was nearly three years old before she slept through the night. Right before I completely lost my mind from sleep deprivation, I received some wonderful advice from my daughter's pediatrician. He told me that it was not my job to meet all of my daughter's needs, but rather to make sure that all of her needs were met.

That piece of advice is one that can be appreciated by family members caring for a loved one with Alzheimer's disease. All too often I meet caregivers that are so overwhelmed with providing all of the care their loved one needs, they are too exhausted to plan for the future or make good daily decisions. "Share the Caring" should be the motto of all primary caregivers.

Caregivers frequently wait until a crisis occurs before they seek assistance in caring for a loved one with Alzheimer's disease. A time of crisis is a lousy time to be making decisions about appropriate care. The following are some suggestions that may help you while living with a loved one with Alzheimer's disease.

Really believe that an Alzheimer's patient needs more care, for a longer period of time, than one person can provide alone. Say "uncle" and ask for help!

Make a list of the type of help you need. Do you need someone to sit with your husband while you go grocery shopping? Do you need someone to entertain your wife for an hour while you take a nap after a sleepless night? Do you need someone to mow the grass because you can't leave your mother unattended? Do you need a day or a weekend off? Be specific in your needs and expect them to change as the disease progresses.

Start with your family. I continually meet adult children of Alzheimer's patients who were not aware of the severity of their parent's impairment until the caregiver died. Make sure your minister and church are aware of your needs, even if you have not been able to attend church recently. Tell your neighbors about your loved one's condition. Ask a friend to organize assistance for you. Never go to a doctor's appointment without a written list of the most difficult to handle symptoms.

Find out what services are available in the community and never stop searching for additional services. Do not assume that anyone, including a professional, is aware that you need assistance.

Budget for respite care like you do for food and electricity. Respite care is just as necessary. Adult children that are unable to provide physical assistance may be willing to contribute money toward respite or adult day care.

No one gets to vote on care options unless he or she is actively involved in caregiving on a regular basis. I have watched women literally kill themselves caring for a husband at home because their children, who live out of state, don't want their father in a nursing home.