Written by David Luery, ElderHealth Member
In March 2020, my wife was diagnosed with Alzheimer’s by a neurology practice here in Tucson. Like most neurology practices, they were not equipped with the support services that can be so helpful for both patients and family caregivers. At the outset of my wife’s disease, she and I were essentially on our own in learning to live with and manage this new reality. As I eventually figured out, however, that reality was not mutually shared; it became apparent that she and I saw different realities.
For the first nearly two years, my wife, a retired healthcare professional, frequently believed that she was still working. For example, she would frequently believe she had in-person meetings that she needed, often urgently, to attend. At first, I tried to argue in what I thought was a rational manner that, due to COVID, no one was having in-person meetings; that her meeting would be conducted remotely via Zoom. Not surprisingly, this line of argument was not persuasive to my wife, who would frequently grab some papers, any papers, and head toward the front door in order to go to her meeting. I would ask her where the meeting was. The typical response? ‘Out there,’ and she would point in some random direction.
A Care Partner’s Response To Dementia
In tense situations like these, my initial response was to challenge her and, all too frequently, physically restrain her out of fear for her safety. Of course this would enrage her as, being a responsible professional, she had an important meeting to which she ‘had’ to go. Both of us would inevitably end up upset with each other— but only I could understand the reason for the upset.
As I later—much later—came to understand, I was acting as if my wife was still living in the same reality as me. That she fully grasped the reality of COVID, of the necessary precautions and restrictions to business as usual. I did not yet understand that her reality and mine were unalterably changed due to the disease she now faced.
Over time, I came to understand that the best way to deal with my wife’s need to attend meetings was to play along and volunteer to take her to her meeting. So we would hop in the car and drive around, more or less aimlessly for 30 minutes or so, and then go home. By then, she would have forgotten why we were out for a drive and, more importantly, forgotten about her ‘meeting.’ In one memorable case, she believed she was urgently required to visit a patient’s home to provide emergency care. We got in the car, and at each intersection I asked her which way, left or right. Eventually we ended up on Catalina Highway, on our way up Mount Lemmon, as by then my wife believed that the patient lived in Summerhaven. But rather than drive all the way up there, I suggested that we pull over and call in to check on the patient’s status. So we pulled over, I got out my mobile phone and pretended to make a call. I ‘learned’ that the patient had taken a turn for the worse and had been medevacked out. Thus my wife was no longer needed, and we could turn around and go home, which we did. Most importantly in that moment, my wife was comforted and no longer concerned about the ersatz patient. I now know that this tactic is called ‘diversion.’
My wife also experiences intermittent spells of crying and sadness for reasons that are unclear to me.
Over time, I found that going out for a walk or, again, a drive in the car is almost always guaranteed to restore her to a good mood. Thirty minutes after a crying episode, she doesn’t even remember her tears and sadness. The walk or drive has diverted her attention from whatever unknowable (to me) cause has been upsetting her.
The lesson learned involves what is known as “therapeutic fibbing.”
This entails stepping into a dementia patient’s reality by telling a lie to intentionally avoid or reduce the patient’s agitation or stress. Especially in the early days after her diagnosis, my wife would say she wanted to go see her parents or her mother. Even I knew better than to tell her that they were deceased. At first, I would instead tell her that it would take three days to drive to Chicago. Or, due to COVID, it wasn’t safe to travel. Again I was trying to impose my reality on my wife. A much better solution, as I eventually learned, was to tell her that they were away from home and could not be contacted, but we could call them when they returned. A small fib, but one that was believable in the context of her reality that her parents were still living.
Another important lesson I have learned is the value of support groups.
I participate in three virtual groups with other family caregivers, and from them I have received support and validation in the (virtual) company of people going through the same things I am. In addition, the support groups also have the tangible benefit of allowing us to exchange strategies and techniques to better care for our loved ones. I cannot overemphasize the value of such support groups, as the transition to a caregiving role is neither easy nor intuitive.
This article is featured in the forthcoming Heart at Home newsletter Fall 2022 edition. Visit the newsletter section of our resource library to find more Reader Connections from ElderHealth members.