The journey of dementia presents a variety of potholes for all who travel it.

One 'pothole' is how to manage the balance of power when care partners are unclear about how much 'help' is appropriate to provide their loved ones. Some call it 'over-vigilant caregiving.'  What does this look and feel like?

Folks who have a diagnosis of dementia often talk about how hard it is when their families or friends try to 'help' them inappropriately through 'over-vigilance.'  The care partner or friend may:

• Make a decision for them - that the person with dementia is capable of making and would like to make or participate in making.
• Question their hygiene - when they feel okay with themselves.
• Plan an event or order from a menu - with no input from the person with the illness who will be impacted by the outcome.
• Hurry the person with a diagnosis when it is actually no longer possible for that person to do what is required to keep up with them.
• Move ahead in conversation at their own normal speed, leaving the person with the diagnosis far behind, cut off and therefore out of the exchange - because their brain cannot process language and concepts as fast as it once did.
• Take over or complete an activity from a person with the illness without considering where in the process that person is or how they feel about it.
• Insisting on doing something the way the care partner wants it done - when the person with the illness might have another preference.
• Insist on a clothing change - when the other feels just fine in what they are wearing.

Even as these examples were given, those who shared them expressed understanding that most care partners are very well intentioned and don't realize the impact of what they are doing. However, it didn't change how it made them feel.

So how did it make them feel?

• Diminished
• Infantilized
• Ashamed
• Insulted
• Disempowered
• Hurt
• Invisible
• Sicker than they were
• Embarrassed or worried that they must BE an embarrassment to their care partner
• Defeated because they couldn't stand up for themselves in that moment
• Alone
• Angry
• Unacceptable

And what do the care partners remember about how they felt

in a moment of over-vigilance? 

• Needing to get where they had to go
• Not having the patience to go thru a process with the person with the illness
• Unaware that they were over-reaching
• Protecting their loved one
• Completely unaware that it was hurtful, in fact, confident that their actions were appropriate
• Not wanting others to be critical of their loved one
• Avoiding potential embarrassment
• Trying to manage this one thing in the midst of a hundred other things!
• Exhaustion to the point of tears
• Wanting to be helpful
• Anxiety
• Conflicted about what is urgent and what is not

So what's a care partner to do?

James and Cannan Hyde, a couple who are sharing the journey of dementia, feel that there is no one answer. There are lots of questions about how to walk this journey and they feel that it is best for them to learn to live with the questions, finding the best possible way to communicate with one another, enjoying shared laughter and dealing with the tears as it all unfolds. It's a human story, caused by illness that no one can prevent or anticipate.

James is a patient at MemoryCare. He and Cannan have a close marriage and as professional therapists they have the great good fortune of having a long history of open communication between them.

But even they, on their journey, hit potholes. They recently shared one story of what James considered over-vigilant caregiving:  they had returned home late from a long vacation and James got up early the next morning to attend a meeting. He was being picked up by a friend, and when Cannan got up to say good-bye, she found him wearing his undershirt under an open corduroy over-shirt/jacket paired with one of his "least attractive and most casual" (per Cannan) pair of pants. She knew that he had not shaved for two days and maybe hadn't showered that morning. She suggested gently to him that he come with her and get a fresh shirt to put on over his wrinkled undershirt. She remembers that James was muttering as they walked back to their closet together.

James said he felt fine. He knew how he was dressed and knew the folks he was going to meet would have no problem with how he looked. But, he wanted to please Cannan and so he agreed to put on an additional shirt, to cover up the undershirt. She didn't press him to shave - but wished he would. He assured her, as we talked about this recently, that even though he had not showered he had had a good old-fashioned "spit bath" and put on deodorant that morning. "I know I didn't smell," he said with a grin. We all laughed.

James wondered if how he looked embarrassed Cannan and she responded that his more recent way of dressing is in stark contrast to how he chose to dress for so many years when he was a professor. James said that he isn't a professor or a therapist anymore and he is enjoying reverting back to a more casual time in which he is free to not think about what he has on - to be able to go from his pottery studio, with clay on his pants - or from his gardening, with soil on his shirt. Cannan wants to be sure other people don't see him and feel sorry for him. She worries that this more "casual" look he is enjoying might suggest to some people that he has declined significantly - when, in fact, he has not!

Of course, there is no right or wrong answer in their story, but there are a lot of emotions and concerns and the potential for hurt feelings on both sides.

James commented, "What we are used to can't happen anymore. " After years of a dynamic conversational style, Cannan describes their life as having moved into "slow motion".   But, even with the new slowed-down pace, James lovingly describes Cannan's conversational style as "still like a machine gun...rat-a-tat-tat!"... faster than he can often manage.

Finding ways to take the time for both the care partner and the person with the diagnosis, to tell one another the truth of how they feel and where they are on any given hour of any given day, is an important way to find some equilibrium. Care partners then have a better chance at not being hurtful, insulting or disrespectful in their care.

Having a sense of inquiry about a loved one, and an open heart about what the changes are, can lead to better understanding of what is going on and how to be present with one another.   As a result, those with the diagnosis feel more respected, more empowered and can often be better at supporting their care partner in the challenges that they confront. 

As we were ending our visit, James said, "Cannan and I are intentionally trying to work on strategies to share what's going on right now. I have to tell Cannan where I am rather than leaving it to her to assume where I am and have her assumptions be wrong."

And, as we all know, being present to one another with compassion is a great healer, perhaps the greatest healer of all.

Jane Sherman is the facilitator for the Early Memory Loss Collaborative monthly meetings (see Caregiver Calendar for details). She can be contacted at [email protected].