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?”
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.