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Accepting Reality of Dementia

Caregivers' best gift is to accept reality of dementia

It took me a long time to learn this myself …
(in fact I’m not sure I ever completely learned to accept the reality until shortly before my mother was placed in a Alzheimer’s specific ward 6 months before her eventual passing).

As caregivers we either have patience or we need to acquire patience. My father and I would often joke about having to be creative liars. After my mother’s passing I would relive certain situations during support groups I continued to be involved in where this creativity was required to deal with specific situations. Generally, others in the group would begin to tell every one of their own experiences. I have included some of these here as examples to demonstrate that sometimes it is better to just accept the reality of the disease in order to find effective means to deal with day-to-day issues.

EXAMPLE #1 … Mary and John … Mary would lose her eyeglasses and each time she would blame John. John would ask Mary to think back to where she might have left them ... sometimes (possibly with a little frustration in his voice.) John would remind her of where they should have been put. This encounter never went well. Eventually, John learned that if he simply took responsibility for misplacing her glasses everything went much better. And in time, the glasses would eventually turn up.

EXAMPLE #2 … here is a common problem behavior (one that my family dealt with also) wanting to go home — no longer recognizing home as home. I know in my case at first, My father would explain to her that she was home. This only made my mother angry or caused angst and much frustration. Eventually, we worked out that if we could go out to the car, start the engine, drive around the block and back to the house the situation was solved. Another caregiver, mentioned that as a handyman he went and built a bus stop in his back yard near the driveway his wife would go outside and sit at the bus stop waiting for the bus and eventually come back inside. Yet another caregiver told how her husband would start packing, initially she would get in to arguments that the packing him packing was unnecessary. She then tried to explain she had packed for him. As the disease progressed, after he finished packing and was ready to leave for "home” she kindly suggest that they leave in the morning after dinner, or when they were both more rested. He usually liked this idea, being a little tired. During the night, she would unpack his belongings, anticipating the next day when they might repeat the same scenario.

EXAMPLE #3 … Ann and Wayne … A much more traumatic issue for the caregiver, Ann would look at Wayne and say, "Where is Wayne?" In spite of the pain that Wayne must have felt when Ann no longer recognized him as her husband, he would assure Ann that Wayne was just fine and would be home soon. This situation was also raised by another caregiver except that the individual missing was the son who had passed away as a result of an accident. This was dealt with in a similar manner because it caused less pain to the family member than the caregiver who just had to accept the reality of the situation.

EXAMPLE #4 ... here is a twist I mentioned elsewhere on this website. My mother used to prepare the family meals and wanted to help each night even during the later stages of her progression with Alzheimer's. My concern began when she often tried to use the kitchen knives out of the block on the counter to cut things and as the disease progressed began using holding the knife by the blade. I was concerned that she would cut herself badly but when I tried to intervene she got angry.

Eventually I had a little brainwave, I took the knives and the block to the workshop and using the grinder made the blades completely square., Then placed the squared metal blade with the handles back into the wooden block they had been stored in for years and put the block back on the counter. Next day I went and purchased a new set of carving knives and kept them in a Kitchen drawer. When my mother wanted to help I gave her a tomato and let her squash them with the knife, then cleaned it up by scraping the board into a saucepan and saying "thank you for the help why dont you sit in this chair and relax while I finish up".

EXAMPLE #5 … Amy and her father …. Although Amy's mother has passed away, Amy's father doesn't understand why his wife isn't around. He continually asks, "Have you seen mom?" Amy shared that she has to tell him every time that she's gone. "For my Dad it's like he's losing her over and over,". Amy points out, telling him each time that his wife has died is like hearing it for the first time for her father. Consequently, he feels profound sadness, probably confusion, or even anger, over and over again.

An alternative way of responding in Amy's situation could be something like this: "Dad, I can tell you are worried." This statement validates his emotions. "Mom has been a wonderful wife and mom! Dad, I remember the time mom (insert a good memory, funny story ...)" This could potentially begin to shift the emotion from feeling worried to feeling understood, thus shifting attention to happier times. Some would call this the art of distraction not unlike what many tried to do with young children.

In each case, what the caregiver’s learn over the years is that the most loving gift the family member needs is a sense of ease. Telling them the truth… that Mary lost her glasses or that there was no need to pack because they were at home, or that her husband or son was right there standing in front of her, didn't serve anyone at that stage of the progression of the disease. To the contrary, it would make them confused, angry and sometimes scared. In truth everyone learned that the best way to care was to accept the disease, which meant accepting the reality.

I would strongly recommend to any caregiver that they try this exercise in their support groups … I found it a very strong and sometimes humorous way of dealing with the caregiving role.

"They may forget what you said, they may forget what you did, but they will never forget how you made them feel."
Maya Angelou

Something to think about

Research conducted at the University of Iowa involved individuals with memory loss watching clips of both happy and sad movies. Although the participants couldn't recall even one detail about what they had watched, they each retained the emotions elicited by the clips. Happy movies left lingering happy emotions in the persons with memory loss and sad movies left them feeling sad long after the movie was over. This study underscores that while physical time spent with a family member may be forgotten almost immediately, the emotions created by the visit may stay behind long after you've left.