Long-Term Caregiving

by Stan Janocha, 63, of Huntington Beach, sign company executive, as told to Anne Valdespino

I came home from work one day in 2000 and knew something was wrong. My wife, Wendy, a graphic designer, was 49 at the time. She was sitting at the table having a glass of wine. I asked her what happened and she said, “I don’t know. I was on the 55 Freeway. I was stopped in traffic. Everything turned white. Next thing I know, cars were honking at me. I worked my way off the freeway, and took surface streets home.”

I asked her if she wanted to go to the hospital. She said no, she wanted to have a glass of wine, and have some dinner, and go to bed early.

I made her quit her job.

The doctors treated her for a long time for stress and anxiety. She was going to write a children’s book and do her own artwork in it—she’s done hundreds of watercolors and they’re great. So, she went back to school but she was struggling with her art.

In 2002, she learned she had Balint’s syndrome, a vision disorder. She had to stop driving and she became housebound. It wasn’t until March 2009 that we found out that Wendy had Familial, or early-onset, Alzheimer’s. Now she’s 57 and in the sixth of its seven stages. But she’s had dementia for eight years.

In the first three or four days after the Alzheimer’s diagnosis, you think a million things. You think about her being gone. It’s tough when you know there is no cure. Nobody survives Alzheimer’s—nobody.

Early in the process, life as a caregiver was much more mentally difficult. From 2004 to ’07, against Wendy’s will, I slowly had to take over more and more of what she had done for the family for 20 years. There was a lot of stress on our marriage. Wendy would be so angry she would call me and rant that I was taking over her life. She would talk about divorce, about kicking me out. It would be this way day and night.

I would get angry, be confused. It would be nothing for her to call me the minute I left the house and yell or cry. Often I would turn around and go back home to calm her down. I would leave work, come home, talk to her, and drive back. I would be so upset that it reflected in my work. I could do nothing unless it included Wendy. In other words I couldn’t go to a ballgame with my sons, or for a day of fishing.

It’s a second marriage for both of us; we’ve been together 24 years. We’ve raised five children and we have eight grandchildren. My relationships with my sons were greatly affected during the middle years of her dementia. They were not aware of Wendy’s medical situation; they just wondered why we didn’t hang out anymore. This is one of the things up till today that is very hard for me to deal with, because nobody knew what was going on. Wendy never wanted anybody to know. And she swore me to it. If anyone asked, I told them she was having problems with her eyes. She didn’t want the kids, her father, or stepmom to know. Wendy would often say she was “damaged goods.” So for those years, I was mentally drained and fatigued. I developed high blood pressure. Although we went on a cruise to Mexico and a trip to Hawaii for her son’s wedding, for the most part, life was no fun for either of us.

By late 2007, Wendy had changed, most likely due to the progression of her dementia. She was OK with me doing the cooking, the laundry, cleaning the house. A burden was lifted: I did not have the stress of her angry resentment on my shoulders every day. She was still clingy, but she was not always angry. Our marriage improved, there was more intimacy, and we were much closer again.

Toward the end of 2008, it became dangerous for her to be left alone. I started working less and less. Instead of getting home at 5 or 6, I was getting home at 4. Next thing you know it was 3, then 2.

I met with her dad, stepmom, and her children. I told them that I couldn’t leave Wendy alone anymore, but that I had to work at least four to five hours a day. Actually, going to work was a needed break from being a 24/7 caregiver. Everybody was concerned. And everybody was mad at me. I had to explain that, for years, Wendy didn’t want help. But now she doesn’t know she’s getting help. So we worked out a schedule when everybody would come, knowing that I’d always get home at 1. Since then, Wendy has never been alone.

As long as she has family with her, Wendy is OK when I leave now. She still stresses a little, but overall, with medication, things are under control. I was able to go to an Angels game last season with my two sons for the first time in over two years—it was a great day. I don’t break down and get emotional much anymore, but the night of the game when I went to bed I did. I was thinking of all the time I lost not doing things with them. I don’t know if I can put into words how it eats at me today; I will never get those days back.

Today, as Wendy has regressed, being the caregiver is much easier. Now it’s like taking care of a child: Dress Wendy. Help her to the bathroom. Help her eat. I have been talking to the family about getting a nurse to help us. It’s getting harder to help with her hygiene. I know one day Wendy will need full-time care. Physically it’s much more demanding and tiring, but much easier for me to handle mentally.

Now our family goal is to make her comfortable. It’s not easy. It takes love, lots of patience, prayer, and the support of family, friends, and co-workers.

We used to walk a lot in Huntington Central Park. There are these park benches that people donate and one time a bench went up and it said: “In love we meet and never part.” Every time we walked by that bench—hundreds of times—I read that inscription to her because Wendy can’t read anymore.

Every once in a while she will say something and all of a sudden for a few seconds she’s herself, and I’ve just gotta fight back tears because there’s the old Wendy, the Wendy I knew. Today she rarely smiles.

That’s us at a wedding in 2005. She’s beautiful, but today she’s nothing of what she was before, the girl with the flighty smile, the girl with the love for life, the girl who would do anything for anyone. Wendy always had a love of everything, especially me.

Anyway, that’s the way it is. If I were in the same boat? I know she would take care of me the same way I take care of her. Wendy is still the girl I love and we will never part.

Studies Show
One to 5 percent of all Alzheimer’s cases are early-onset, but many are not immediately recognized because they are so rare that doctors may hesitate to diagnose young or middle-aged patients with this disease.
—Alzheimer Research Forum

Photograph by Jason Wallis

This article originally appeared in the January 2010 issue.

Facebook Comments