Watching a loved one decline inevitably brings feelings of grief. When the loved one displays dementia delusions and agitation, grief can be accompanied by frustration. Seniors Guide writer Terri Jones offers a glimpse into how her family learned to respond to her father’s dementia.
Dealing with the ‘demons’
My 87-year-old father, who has vascular dementia, fell and fractured his hip. While in the hospital, he aspirated liquid and developed double pneumonia. While he has been convalescing in the hospital and a rehab facility, his dementia delusions and agitation have escalated significantly.
Some days, his delusions are comical, like when he alternately referred to me as his “adopted son” (I am female) and my stepmother’s “prized possession” to the ER staff. However, other times, my father becomes more anxious and paranoid, and that anxiety can ramp up quickly when he feels no one is taking his concerns seriously.
Lessons in managing dementia delusions
Join their reality
In the beginning of my father’s illness, we had no idea how to deal with his delusions and agitation. We’d try to convince him that he was at home – that no one was trying to break into the house – that my stepmother was a good wife and looking out for his best interests. But disagreeing with him only seemed to exacerbate his anxiety and agitation. Thankfully, in those days, his breaks with reality were less frequent and far less severe.
However, over the past year or so, his dementia delusions have become more pervasive and fraught with paranoia and sometimes aggression. Just yesterday in the hospital, he ripped out his IV, sending blood everywhere. My dad apparently thought someone had hurt him and he needed a knife to protect himself. When no one would give him one, he had a full-blown panic attack with his heart rate skyrocketing and his oxygen level dropping. The medical staff finally had to sedate him.
As his delusions have become more serious, we’ve learned that going along with them (if there’s no danger involved, like needing a knife for self-defense) is usually a much better route to take. Karen Stobbe, a career actor whose mother was diagnosed with Alzheimer’s, says that affirming their reality “allows the conversation to continue in a more positive way and leads to less frustration.”
For example, my father thought he needed to pay the staff when he was in the ER and insisted that I go to the nurse’s station and pay the bill. (For some reason, many of his delusions revolve around paying people.) At first, I told him that we’d pay the bill when we left. That didn’t satisfy him. His anxiety escalated when he thought a line was forming to pay bills. He demanded that I go out there and pay the woman at the register (she was actually a nurse at a computer). “Don’t be shy!” he chided me (I was a very bashful child!).
I finally went to the nurse’s station and asked the nurse to pretend that she was taking money from me. She played along, even going a step further by coming into my father’s cubicle and assuring him that he was all paid up. That seemed to pacify him, particularly after I told him that I had the receipt in my purse.
In another instance, my father had played BINGO in his occupational therapy session in rehab and lost. Once we were back in his room, he was worried that he had lost money. I assured him that we hadn’t bet any money, but he wasn’t convinced. So, I told him we had only paid $5 a card and that’s all we could possibly lose. When he still didn’t calm down, I pretended like we were playing another round of BINGO (with me calling the letters and numbers and playing both of our imaginary cards). This time he won the round! While he still worried about losing money, that activity at least distracted him for a while (and was kind of fun for me, too)!
Learn their triggers
People with dementia often can’t differentiate what’s on TV from reality. I had to learn this the hard way while watching an episode of “Cops” with my father. After the show was over, he thought people from a landscape crew were waiting outside to get into the house and he repeatedly insisted that I check all the doors to be sure they were locked.
My stepmother has learned that old shows on TV Land are the best bet for my dad because they rarely include violence or other content that will cause him to panic or act out.
Provide distractions
However, she found, it was important to pay close attention to his comments while he was watching the show.
If comments on a show or other activity lead you to believe that your loved one has inserted themselves into the action or they’re starting to spiral, change the channel or activity casually but quickly to hopefully head off the anxiety.
Other distractions that can work include a delicious treat (cookies worked for my father), a furry friend in their lap, or just reminiscing about times past, which they often recall in great detail. When my stepmother took a scrapbook that I had made for Father’s Day a few years ago to the rehab facility, my father flipped through the book over and over again. It diverted his attention away from whatever “crisis” was at hand.
Stay calm
When interacting with someone with dementia delusions who is anxious or agitated, try to stay on an even keel yourself … although that’s often easier said than done. Don’t raise your voice or show alarm. Don’t argue with, judge, or restrain the person. You also shouldn’t ignore them in hopes that not showing them attention will take some of the fire out of their anxiety (it will often go in the opposite direction!). Instead, try to determine what might be causing their agitation and provide reassurance with phrases like: You’re safe here. Everything is under control. I’m sorry that you are upset. I know it’s hard. I will stay with you until you feel better.
Consider family dynamics and ingrained beliefs
Even though I am 65 years old, I am still a child in my father’s eyes. For that reason, he often doesn’t believe that I can handle situations that are concerning or scary to him. Even my stepmother isn’t always successful in this respect because the men in my dad’s generation took care of women … and not the other way around. However, if their neighbor, who is male and a close friend, tells my father he has things under control, he often settles down.
The same things that work for one person with dementia often won’t work for another or even work all the time. Dealing with delusional behavior and agitation is often a trial- and-error process. If you don’t hit on a successful strategy, just keep trying.
Last weekend, after a month of hospitalizations and rehab, and ultimately hospice, my father’s frail body and mind gave up. While we lost the sweetest man on earth, he no longer must deal with the demons plaguing him and for that we are grateful. Rest in peace, Daddy.
