“Yes, mom,” I say to her gently, “You are 96.”
She shakes her head in disbelief and responds with, “No, I’m not!”
I ask mom how old she believes she is and the response, “In my seventies.”
An aide attempts to confirm her age, but mom resists, and I eventually have to change the subject.
This is how the conversations have been going with mom ever since the Wednesday before Mother’s Day. On that day, mom was admitted to the ER with a fever. Three hours later, she was sent home and a heavy-duty, 10-day antibiotic was prescribed to treat what was thought to be either a UTI or the start of pneumonia. Given that the ER doctor did not feel it necessary to keep mom overnight, I felt that this was simply a bump in the road and life would return to as-normal-as-it-can-be for her.
I was wrong. A flip was switched that day, one that would worsen her dementia and turn off memories of the present.
Mother’s Day weekend was bittersweet. My brother came home to the unwelcome consequences of mom’s health issues. On Friday afternoon, mom spit out many random words and sentences, none of them making any sense. Saturday was somewhat better, with fewer random words and more of a conversation. Mom knew her son; however, I was her sister Jeanne. The latter has been common for some time now, and I’ve learned to roll with a change in identity at any given moment.
On Sunday, mom regressed as she kept calling for her daughter. “Where’s Mary?” she would ask repeatedly and when I told her, “Right here mom, it’s me,” she would look at me extremely puzzled. Finally, mom asked me to move in closer and then asked, “How tall are you?” I told her 5’8″. She said, “No, that’s not right.” So, I asked, “How tall am I supposed to be?” An elderly left hand went level with the well-worn arm of the wheel chair. Mom had been looking for child Mary, perhaps the one who was five or six years old. This tall, fifty-something woman was too tall and too old to be her daughter.
On the Sunday after Mother’s Day, the anxiety and paranoia that can come with dementia showed its ugly face. “You need to get me out of here, I’ve been kidnapped” claimed an insistent mom. “Don’t leave me here, you can’t leave me here,” was the other plea. Mom repeated both mantras several times and I felt hard-pressed to comfort her. I tried to gently tell mom that everything was okay, that she was being cared for, there was no need to leave, but that was not good enough. In mom’s mind, she was being held against her will and I was her way out. “Just take me to the bus station. I’ll take the bus home.” Mom’s reality did not include her frailty and she stated that I could simply drive her to the corner and she would walk the rest of the way to the bus.
At this point, two chapters of a recently read book, Creating Moments of Joy by Jolene Brackey came to mind – “Stop Correcting Them” and “You are Wrong, They are Right.” I attempt to put that into practice every time I visit mom…to not argue with her or correct her, but it’s easier said than done. Is it possible to agree with a kidnapping or that family members are alive when that is far from the truth? In contrast, I have had several moments of agreeing with this dear woman, only to be told I wasn’t telling the truth or “that can’t be right.” It can be a no-win situation, one in which any answer is the wrong answer.
On kidnap Sunday, I felt completely frustrated and emotionally unnerved. I wasn’t prepared for mom’s paranoia and the pleas to save her from the two people at the next table (an aide and resident), who were scheming and plotting against her, and the police officer that walked into the dining room as we were talking (it was another resident in a blue sweatshirt). For a while, I didn’t know how I was going to comfort or calm my mother, or if I would be able to leave without her going into hysterics. Thankfully, after shift change, two of mom’s favorite aides came on duty and both engaged her in a delightful conversation that helped to calm her anxiety for the moment. With one aide’s encouragement, that he would take care of her and she would be safe, mom seemed to forget about being “kidnapped” and started to focus on supper. Eventually, I was able to say goodbye to mom without her asking me to take her home or to the bus stop.
While the paranoia of a perceived kidnapping has disappeared, the yearning to “go home” has not. Mom has not recovered from the Mother’s Day incident in the way that I had hoped. She has taken a deeper step into dementia, a change that seems to be permanent until the next change occurs. With every visit, mom begs me to take her home to Milwaukee. She believes her mom and dad are alive, as are her siblings, because she can’t remember their deaths or funerals. She doesn’t talk about her husband unless I bring up his name. Even though mom knows my name is Mary, she still asks for child Mary. And the odd words or sentences show up in a random fashion. Mom and I have conversations, but they are not the stories where she recounts her childhood, the stories she could remember. Today, the conversations between mother and daughter create an environment where little white lies are necessary. “I can’t take you home, mom, I don’t have a car,” or “I don’t know where your brothers are, they must be working.” These are lies of necessity.
“No, she hasn’t asked for one, so we aren’t making them for her.”
“That’s okay. I should probably take the brandy and vermouth home with me so it is out of your way.”
“We’ll let you know if she starts asking for them again. You can always bring it back.”
Along with the end of the brandy manhattans, mom has not been asking to go out for lunch on Saturdays and I have not attempted to take her out for a ham sandwich or a ride around town. My fear is that once I get her into the car, if that’s still possible, she will be confused about where we are going and insist that I take her “home.” And I won’t be able to get her out of the car once back at assisted living.
Perhaps I need a friend and the Cabulance; perhaps I need to let this go, as I did with the adult refreshment.
The good that has come from this recent decline, is that mom no longer sits alone in her room for most of the day. In order to keep a better eye on her, the aides have her hanging out in the living room or dining room with the other residents. Mom had not been a social butterfly before this, choosing to stay in her room during the time there were no meals or activities. I had always been concerned about this since her visual and auditory disabilities leave her without the ability to watch TV or listen to the radio. There was no stimulus in her being alone in the room, other than the occasional visitor or drop-in by one of the aides. Now, mom is around people and conversation and the aides who care for her. I believe this is a much better situation for her. Mom can focus on the happenings around her from time to time, rather than dwell on the confusion that inhabits her mind.
What I have learned over the past few years, watching mom descend into dementia, is that there is much I have to let go of, including the desire to make it all better. Dementia and Alzheimer’s are irreversible and there’s not much that doctors or I can do to bring mom’s mental state back to normal or even back to where it was two months ago. What I can do for myself is be educated about the disease and discover ways, through classes, contacts and reading material (I highly recommend the book mentioned above), to engage with mom in a way that doesn’t create additional anxiety for either of us. A good cry, now again, also helps with release and acceptance.
“No, mom, I can’t.”
Why not, don’t you have your car?”
“Yes, but I have to meet someone when I leave here.”
“I’ll be back to see you next week, on Saturday.”
“Then will you take me home?”
“We’ll see…if I have a car. I love you, mom.”