Rights of Alzheimer’s Caregivers

However you handle the person under your care, whatever decisions you make, you should bear in mind that you, too, have certain rights as a caregiver.

The Right to Get Frustrated

If your loved one is sorely trying your patience, simply stop what you are doing, take a deep breath, and do something else.

The Right to be Occasionally Impatient

Of course, it is pointless to show your impatience to the patient, since he either will not understand or may feel hurt by your impatience. Try to channel the feeling into more positive activity — talk it out with someone neutral, do something physical like housework, or take a walk.

The Right to Want Time to be Alone

You’ll need to replenish your energy by sitting quietly, reading, or perhaps going out with a close friend. A short nap can do a world of good in restoring your composure.

The Right to Make Mistakes

Your judgment will take you only so far. The patient’s constantly changing behavior will present challenges, some of which you will be unprepared to cope with adequately the first time around. You’ll learn through trial and error at each stage of the disease.

The Right to Ask for Help

You have limits, which you must respect for your own sake, as well as for the patient’s. Don’t hesitate to call on family, friends, and community resources for help. Your doctors and clergy can make referrals.

The Right to Grieve

It is not unusual for you to feel intense sadness even while your loved one is alive, because so often he doesn’t seem to be the same person anymore.

The Right to Love, Laugh, and be Touched

You’ll still make real contact with your loved one, sometimes unexpectedly. Be open to these special moments. There are still many riches in your loved one!

The Right to Hope

Never give up. While Alzheimer’s follows an inexorable course, there are moments of lucidity, slight upturns that bring relief to patient and caregiver alike. Learn to look for and gather strength from these moments.

Whatever you do, don’t despair. A cure for this difficult condition
will eventually be found. Perhaps during the lifetime of your loved one effective treatment will become available. Keep in touch with your sources of information, such as the National Caregiving Foundation, to find out about the latest resources and help for caregivers and patients. Death is as inevitable as birth. Care and compassion make us human.

In the meantime, know that there are many people out there who care about you and want to help you and your loved one.

The Right to Have Fun

Like a tree without the sun for nourishment, without fun in your life you are going to wither away. It is as important to have fun and recreate as it is to do work and chores. Don’t discount it and don’t feel guilty if you enjoy yourself from time to time. You are a person too and need to experience the same pleasures as you wish for your care recipient. Make some arrangements to go out to a movie or dinner or for a walk in the park. It’s okay to have some fun.