Small Victories in Dementialand

I try to respect people’s privacy. Within my blog, I change names and identifying details of individuals. And, when possible, I ask for permission to tell stories.

Almost without exception, people want their stories told. They are excited about the possibility they have had an insight or experience that others might find interesting or useful. They may not want their names given, but they want their stories out there. They want their stories told not because they want attention or credit, but because their story might help someone in a similar situation. And I love that most people are like this. When it is possible, they want to use their own struggles to make life a little easier for someone else, even if they’ve never met that someone.

I had a “first” of sorts this week. I was out running errands wearing bleach-stained sweats and a baseball hat. It was one of those days when you hope you don’t see anyone you know, but I did. I happened to run into an acquaintance, Shirley, who reads my blog, and she told me a story.

After she finished the story and was walking away, she said, “If you think this story could help someone else, please feel free to repeat.” I do think it could help someone else, so I will repeat.

Shirley’s mom has Alzheimer’s and lives in a nursing home. At this point, she rarely remembers family members, and Shirley has started calling her by her first name because “Mom” doesn’t make sense to someone who doesn’t remember she has kids.

A while back, Shirley and a family friend were visiting the nursing home. They had brought in some Blizzards from Dairy Queen and were helping Shirley eat hers.

With a mouthful of Oreo Blizzard, Shirley’s mom said to Shirley, “Honey, you make good food. Is there a comment box here? I want to write a comment about how nice you are. Maybe you’ll get a raise.”

As Shirley told me this story, tears welled up in her eyes. She explained that as a kid she had always sought her mom’s approval but never felt like her mom was able to express admiration or pride. She never felt quite good enough for her mom. Despite her mom identifying her as a nursing home staff member, Shirley had this overwhelming feeling of satisfaction that she had done something that met her mom’s approval.

As they left the nursing home, the family friend said to Shirley, “It’s so hard for me to watch how your mom doesn’t even recognize you. I feel so bad for you.”

I talked with Shirley about how two people can perceive the same situation very differently. Although the friend saw this interaction as sad, Shirley left the nursing home with a sense of peace and contentment she hadn’t felt in a long time. What her mom had said was so meaningful that it took her breath away. And her friend simply saw a woman with dementia who no longer recognized her own daughter.

Dementia is not a “look on the bright side” type of thing. It’s a fatal disease that leads to emotional and physical pain. It gradually robs us of our friends and family members. We can’t prevent it, and we can’t slow its progress. I would never tell a family or individual to see the glass as half full after there is a diagnosis of Alzheimer’s or a related dementia.

And, yet, sometimes there are these poignant moments, and you have a choice about how you interpret them. When you are able to find a positive way to interpret an interaction with someone who has dementia (when you could interpret it negatively), you win. It’s absolutely a victory.

Sometimes you don’t get a lot of victories with dementia. So you gotta grab them when you can.

In that moment, it was Shirley 1, Alzheimer’s 0. Maybe the score would be different the next day, or even in 10 minutes. But you only focus on the game you’re playing right now.

Thank you for sharing that story with me, Shirley. I rarely cry, but you almost made me tear up in the snack aisle at Walgreens.

Gifts from Dementialand

I’ll start by saying that dementia is NOT a gift.

It’s not a normal part of aging. It is cruel and debilitating.

And, yet, there may be gifts that come along with dementia. And when we are given a gift by dementia, we must accept it.

(I tell the following story with the permission of the family it is about.)

I spoke at an Alzheimer’s support group a few years ago. A woman came up after I was done talking to ask a question. She explained that her sister, Suzy (not her real name), had died by suicide eight years earlier. Suzy had been a drug addict who was diagnosed with bipolar disorder. She’d struggled to hold a job and had rocky relationships with her family, including her parents.

Her mother, Millie (again, not her real name) had found Suzy after she passed of a gun shot wound, and not surprisingly Millie had been plagued by depression since the death of Suzy. The situation was even more heart-breaking because Millie and Suzy had a big fight the evening before Suzy’s passing, and Millie had said some things for which she would never forgive herself.

Millie had been on several antidepressants and seen multiple therapists in the years following Suzy’s passing, but nothing relieved the depression which plagued her. In fact, it only seemed to get worse. Millie quit her part-time job, stopped seeing her friends, and barely left the house.

As Millie entered her 70’s, she received a diagnosis of Alzheimer’s. Soon after her diagnosis, Millie began saying things like, “Suzy hasn’t been around much lately. I wonder what she’s up to,” and “I’m hoping Suzy can make it to dinner this week.” Her family realized that she had no memory of finding Suzy after she had passed away. Although Millie struggled to do everyday things like make dinner, put away laundry, and take care of her dog, the depression seemed to lift.

The woman telling me this story could hardly get the next part out without tears. She said, “And it’s so hard telling Mom over and over that Suzy is dead. We have to tell her at least once a day.”

I asked what Millie’s response was when they told her Suzy had passed away several years ago. The woman said, “Well, even though it happened eight years ago, she breaks down just like it’s the first time someone’s told her.”

WAIT. STOP. It’s not “like” the first time someone’s told her. It IS the first time someone’s told her. Each and every time. It is the first time she’s hearing that her daughter is dead. It makes no difference that eight years have passed. It makes no difference that she’s been told literally hundreds of times.

In retrospect, I could have been gentler in my delivery, but I asked the woman to explain to me what it felt like when she was told her sister died by suicide. She told me her legs wouldn’t hold her up and that her gag reflex kicked in. She told me that she called friends to let them know but no words would come out when they answered the phone.

I pointed out that this was similar to what Millie felt every single day when she was told that Suzy was gone. The woman looked horrified but then asked a question that people ask me a lot: “But is it okay to lie?”

YES.

And if you don’t want to think of it as lying, you can call it “therapeutic fibbing” or “stepping into their reality.” Whatever makes you feel better about it. But YES.

Millie lived in what I sometimes refer to as Dementialand. In Dementialand, Suzy was still alive. And, in that sense, Millie’s reality was far more comforting than the reality that her family tried to insist upon.

Her family can argue and correct her all day long (as they were doing), but they can’t get her out of Dementialand. This is apparent when Millie asked again the following day where Suzy was. As a family, you have to learn to step into Dementialand instead of fighting it. And in this particular case, Dementialand had some advantages.

Living with dementia is hard work for the individual who has it. You may question others; you may question yourself. You may have debilitating anxiety. Dementia is about complete brain failure. It’s cruel, unrelenting, and terrifying.

This is why when dementia gives us a gift, we take it and run.