The Awesome People I Meet in Dementialand

Sometimes I get on a streak where I write sad posts, and I’ve been on one of those streaks lately. To Dana and Sarah…I’m sorry I made you guys cry at work. I promised myself that today I would write something happier–at least less sad. So here goes…

I used to visit a particular nursing home quite frequently. I’d see a couple sitting by the nurse’s station. They were both in wheelchairs and looked quite frail. Sometimes they were holding hands. They talked a bit but not much. Their conversations didn’t make much sense to me, but somehow they seemed to get each other.  They had an undeniable connection and words seemed unnecessary.

I don’t know if they seemed happy…maybe comfortable is a better word. I usually said a quick hello to them as I passed. The man would just smile at me, and the woman would typically respond with a smile and a “Hi, honey.” Honestly, I didn’t really think twice about them or their relationship.

However, one day I entered the nursing home and noticed another woman sitting with them. She was well-dressed with fresh make-up and a bright smile. She had pulled up an uncomfortable-looking tacky floral chair on one side of the man and was holding his hand. The other woman, in the wheelchair, was sitting on the other side of the man and holding his other hand. As usual, I greeted them as I passed. The woman in the wheelchair responded, as did the other woman.

I couldn’t be sure of it at the time, but eventually I confirmed that the well-dressed woman was, in fact, his wife of over 40 years, who I will call Lynn. She lived about 45 minutes away and visited her husband, Joe, three or four days a week. She felt a bit guilty she couldn’t be there more, but she had a part-time job and also provided care to her grandchildren.

As time went on, it became my routine to make small talk with Lynn if she was present when I arrived at the facility. While we chatted, she would usually be holding her husband’s right hand while the other woman clung to her husband’s left hand.

The woman in the wheelchair? Her name was Zelda (or at least that’s what I will call her). She had Alzheimer’s, like Joe did. After Joe moved into the nursing home, he developed a sort of attachment to Zelda. When he saw her, he’d slowly maneuver his wheelchair close to hers and grab her hand. If he couldn’t find her, he’d use his shuffling feet to move his wheelchair around the building looking for her. If they were seated separately in the dining room, he’d move his wheelchair so he could eat next to her. The staff learned to seat them together. At one point, Zelda was admitted to the hospital. Joe seemed anxious while she was gone.

He didn’t know Zelda’s name, but if you asked him whose hand he was holding, he’d say, “This is my wife.” He’d usually follow with something like, “Isn’t she beautiful?” Once in a while, he’d kiss her hand or pat her knee.

One day I walked into the nursing home and saw that Lynn had brought ice cream sundaes from Dairy Queen. She was feeding Joe tiny bites. Zelda was right there, too. Lynn was feeding her bites as well. One bite for Joe; one bite for Zelda. All three were smiling. That was when I realized that Lynn was an incredible person.

As time went on, I learned more about Zelda. Her husband had passed away years ago. Her kids lived far away, and she seldom had visitors. She had been a nurse in the very same nursing home in which she now lived.

Early on, the staff to tried separate Zelda and Joe if they expected Lynn would be visiting. Joe’s caregivers liked Lynn, and they didn’t want to cause her any pain. However, that only worked for a few weeks. One day Lynn arrived and found Zelda and Joe holding hands by the nurse’s station. A nurse pulled her aside and apologized.

“She told me she knew it was hard for me to see him with her like that,” Lynn told me. “But it really wasn’t. It was a good feeling.”

My husband doesn’t have Alzheimer’s. I don’t know what it’s like to have a spouse who doesn’t recognize me. I don’t have a sense of what it’s like to see my husband holding hands with someone else–someone who he thinks is his wife. I have no idea how I would react in this situation. And I have no idea how others would respond if they were in Lynn’s shoes. I am curious how many would be able to say it was a “good feeling.” I’m guessing it wouldn’t be many.

Lynn liked the idea that her husband wasn’t alone when she couldn’t be there. She pointed out that she was only able to be there about a few evenings a week, and it brought her comfort to know Zelda would be sitting with Joe when she wasn’t visiting. Lynn even included Zelda when their family gathered in the nursing home lounge to celebrate holidays and birthdays. If anyone in Lynn’s family wasn’t comfortable with that, they didn’t mention it to Lynn. Zelda lit up when she saw Joe and Lynn’s grandchildren enter the facility. Lynn wasn’t about to tell Zelda she couldn’t hang out with them. A staff member told me that Lynn even bought Zelda a teddy bear and some of those fuzzy sock slippers for Christmas. They were the only presents she got.

As I got to know Lynn better, she told me that she feared Zelda would pass away before Joe, and then Joe would feel lost and lonely. She wondered aloud if she’d still visit Zelda if Joe died first. It bothered her to think of Zelda not having any visitors.

I told you this wouldn’t be a sad post, but maybe that was a bit misleading. It is undeniably sad that Alzheimer’s can cause a loyal spouse to literally forget he has a wife. It can make a man unaware that the person whose hand he is holding isn’t the person to which he committed to for life. It can cruelly rob individuals and their loved ones of the relationships that are most important to them.

And that’s why, as Lynn told me, you can’t take the pleasures and comforts that it leaves behind.

“Alzheimer’s has taken so much from him. I’m not going steal one of the few comforts he has left,” she said, referring to Zelda.

I find that the most amazing love and most incredible kindness are often found in the situations that seem the most hopeless. Lynn never expected her husband would have Alzheimer’s. She never expected he’d forget her or that he’d spend his days holding hands with another woman. Somehow…and I don’t know exactly how…when she found herself in that situation, she fed them both ice cream and did it with a smile. And she bought her husband’s friend new slippers.

When asked about it, she says with a shrug, “Well, what else am I gonna do?”

There are some awesome people in this world.

And that’s why this post isn’t (all) sad.

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