Fifteen years ago hearing the diagnosis of cancer was almost like learning someone had the plague. People believed it to be a death sentence and, often, it was. More than that was the desire of those hearing the news to turn away, in modern terms: to deny. I have recently learned, that is the case with a diagnosis of Alzheimer’s Disease.
My husband has it. He is only 62.
We’ve borne his diagnosis for two years. The first year we kept it to ourselves and slowly shared with close family members and friends. As I reached out (women know they need support; men still try to be strong and silent), I crashed into the reality of saying the words no one wants to hear. I had to have a friend tell other friends because, while I was ok with saying Alzheimers (though dementia has taken me longer), I grew weary of having to deal with people’s responses. Several people just came to give me a hug; that was good. One friend couldn’t say anything to me for almost four months. I realize how many people try to hide.
Today we don’t think this is the plague; others aren’t afraid of contracting the disease from you, but ... the difference between a news story telling of a 33% increase in the number of people who have the disease and actually running into one of your peers with the disease ... night and day. Sometimes cliches work.
My husband is 62. Most of our friends have recently arrived at, or are approaching, the 60 barrier. I am a baby boomer; he’s just a tad ahead of me, of us. I have a friend whose mother died of AzD, but his father wouldn’t admit it. Now, he asks how my husband is doing; he peers from afar. We are all afraid of aging as we’ve not imagined it. Everyone wants to avoid the reality of my husband.
Mike has been labeled (diagnosed) for five years -- today he can’t shower by himself, well, not if his wife Mary Jane wants him clean. When she gives him his razor, she has to remind him each time of its use. She must work full time; veteran’s benefits haven’t yet been approved. Mike was recently put in adult day care. He came home on day one and asked Mary Jane, “Why didn’t we talk about my going to that place?” “We did, honey,” she reminded him. “Oh, ok,” he said. “It’s fine then. Is it easier for you?” If you were to talk to Mike, unless you know that vacant look in the eye, or are especially perceptive to the slight confusion and the repeated questions, you wouldn’t guess. Mary Jane has to be sure he eats his meals. Mike will turn 61 this year.
Chuck wears Depends ever since an embarrassing accident three weeks ago. His wife never goes anywhere without a change of clothes for him. Chuck is 63; he has frontal temporal dementia. He says things he shouldn’t say. For a while he talked about getting rid of his wife, Polly, for another woman -- an old, old family friend. They’ve gotten rid of all the guns in their house. They still have the three dogs and the cat, but sometimes Chuck locks the cat in the closet. He doesn’t mean to. He cries in the night.
Paul has started to wander, just around the house and mainly at night like he’s looking for something, but still Pat worries. She asked her son to come install door locks like they used to have on cabinets when the son was little and might accidentally open a door to a cupboard containing cleaning supplies. Her son has a hard time believing she’s not over reacting; he doesn’t think his dad really needs to be locked inside at night. He does. Paul’s a bit older; he’s 74.
My husband has become a child in many ways. He proudly displays his Safe Return bracelet, considering it a sign of my love for him, my desire to keep him safe. Of course, it is. Polly had to order a bracelet for herself too or Chuck wouldn’t wear his. I’m lucky. Bob likes the little message that says, “Please call 1-800-572-1172 to help Bob find his way home. He may be confused.” Bob doesn’t see right; this is a sign you don’t often hear about. He can’t tell if the bird feeder is empty. He looks at the table and wonders where the cereal is: in front of his plate. He puts his jacket on upside down, but he doesn’t want help. He reminds me of our daughters when they were 4. Remember when your kids most often said, “I can do it myself!”? He can’t. He wants to. He tries.
Alzheimer’s Disease is the new cancer. People turn away; they don’t know what to say, what to ask, how to feel. When my father had lung cancer, the questions were “Does he need surgery?” “Will chemo do it for him?” With skin cancer above his eye, “Is it melanoma?” No. “Oh good, it’s so treatable then.” We are calmer with cancer these days. Even Elizabeth Edwards expects some kind of future, some quality of life. We all talk about it and tsk and hope it’s true, but we do talk about it. My husband and I were theatre majors; we have too many friends with AIDS. We know someone who’s been positive for years and years; he’s loved his life; he’s on the “cocktail;” he’ll be ok.
We call Bob’s daily medications, a combo of Aricept and Namenda, (the best current treatment for early stage, mild to moderate Alzheimers) his cocktail. I think we’re trying to make lemonade.
