These are some of the things my husband used to do: fly a plane, perform surgery, consult worldwide, head a university and medical centers, hit four holes-in-one. These are some of the things my husband can’t do anymore: find his way to and from an unfamiliar bathroom, work the coffeemaker, play tournament golf and remember something I told him two minutes ago.
My life was upended in 1998 when Ed was diagnosed with Alzheimer’s. We had been married for three years. I was recently widowed, and he was divorced when I fell in love with this accomplished man who ate the right foods, exercised and completed his crossword puzzles in ink. There was no history of the disease in Ed’s family — but Alzheimer’s doesn’t play favorites and it doesn’t play fair.
More than five million Americans have Alzheimer’s. It’s a sad and scary statistic — but is ultimately just a number until you or someone you love is tormented by it. Then your life changes forever. Happily, though, there are lovely moments — laughs, hands held, bodies touched and the precious, fragile gift of time together. Here are some things I’ve learned over the last eleven and a half years, which I hope will help all of those who live every day with this devastating disease.
Don’t take the behavior personally. The individual who has AD is not putting silverware in the refrigerator to drive you crazy; they’re not asking you the same question ten times because they want to; they’re not suggesting you hide their wallet because they think you’re a thief. Please remember, for their sake and yours, that their brain is working hard to try to make sense of a world that’s slipping from them.
Be patient. Alzheimer’s sufferers are acutely aware of tone of voice and body language. When you’re impatient with them, it increases their anxiety and underscores the fact that they can’t function the way they used to.
Ask for help. Many family caregivers (myself included) think we can — and should — provide all the help that our spouse/parent needs. We tend to ask for help, if at all, long after we need it. By that point, we’re usually exhausted and out of patience. It becomes a lose/lose proposition.
Find a good support group. The only people who really understand what you’re experiencing are people who are experiencing it themselves. Support groups are available, but the dynamic and chemistry varies — find one that works for you. Even if you’re not someone who likes groups, let alone group support, try it.
Don’t allow yourself to be fenced in by Alzheimer’s. Alzheimer’s will ultimately narrow the world of the person who has the disease; please don’t let it narrow yours. Find something outside of AD that you care about and can turn to when you have the opportunity.
Find the right physician. Not all health-care professionals communicate well or are equally equipped to deal with Alzheimer’s. Make sure you find someone you can work with.
Enter the patient’s world. As Alzheimer’s progresses, the world of the patient and caregiver resemble — more and more — Alice’s Wonderland. Or a Marx Brothers’ movie. Don’t fight it; find the humor and try to talk with the patient in terms of his or her logic. If you try to impose your logic on someone with AD, you’ll frustrate both him and yourself.
Keep him/her engaged and always assume there is still someone there. Because there is. Talk to the person you love — even when they can’t talk back in an intelligible manner. Hold their hand — even when they can no longer reach for yours.
Get a pet. Pet therapy works, and neither a cat nor dog will care if someone with AD repeats a story ten times in a row.
Go with the flow. If you’re living with someone with Alzheimer’s, it’s a good mantra to keep in mind and to practice.
Editor’s Note: Photographer Judith Fox is the author of I Still Do: Loving and Living With Alzheimer’s (PowerHouse Books).