Leigh Herrick

I saw Stephen Colbert some months ago talking about improvisation with one of his guests.  He related how, during his time learning improvisation at Second City, the key to keep a skit going was yes-and thinking.  That is, a topic was proposed; say, “You’re stuck in an elevator.”  From there, actors would have to improvise using “yes-and” thinking: “[Yes, and] I just finished a large coffee!” one might start. And so on….  Sometime around 1980, in my early 20’s, I was at Dudley Riggs’ Brave New Workshop, the Comedy Club in Minneapolis.  I don’t remember the skit, but the actors proposed a situation and asked for a suggestion from the audience.  I yelled out “super glue!” and the rest for me is a memory of uproarious laughter.

It strikes me that truly skilled caregivers are naturally excellent improvisors. They engage in creative, “outside the box” thinking; thinking that is yes-and.  Psychotherapists and motivational speakers often talk about “yes-and” communication as a way to address conflict or other difficult situations. 

-We’re in a mess here with Dad’s dementia! 

-Yes, and we’re going to figure out what to do. 

-But you don’t know the first thing about it! 

-Yes, and we will both put our heads together and work on it with each other.

-But we always argue about everything!

-Yes, and we might still, but we can try to prioritize Dad’s care.  You have good research skills.

-That’s true.

-Yes, and you could start looking into care costs and I will take Dad to the doctor.

-I suppose that would get something rolling.

-Yes, and when we have more information we can make the next decision, and then the next.

-Okay.

-Good.  Thanks.

OR:

-I’ve lost my watch again.

-Oh, I see.  What should we do about this since you keep losing it?

-Well don’t blame me!  Somebody stole it again and I have to find it!

-Yes, and when we do I think we might buy a special fire safe for all your jewelry so nobody will take it from you again.

-Oh! I don’t want a special safe!

-Yes, and that makes a lot of sense to me.  It’d be too big.  Maybe we should get you a box just for jewelry.

-Like the one I have in my bedroom.

-Yes! What a great idea!  And when we find your watch we can put it inside the box and put the box on top of the refrigerator so your watch will never get stolen again.

-But I can’t reach up there.

-Yes, and then you can ask me, and I will help you.

-But I’d rather use my own jewelry box.

-What a great idea!  Yes, and let’s go get it for you, then!

-Ok.

-But first, let’s find your watch okay?

-Okay.  Here it is! In my pocket!

When you are faced with a difficult situation, just try saying “yes/and” in your mind and see if it helps you come up with a solution that is good for both you and your loved one.  You don’t have to say it out loud.  Just practice a little.  Maybe find a friend to role play with you.  Do it often enough and you will probably start to do better, and feel better, during difficult situations with your loved one who has dementia.

The dementia journey inevitably requires drugs as part of symptom control, especially nearing end stage.  But drugs can have side effects, and it might seem obvious, but in the middle of the dementia journey, with so many struggles and stresses, it can be difficult to think of watching your loved one for potential drug side effects.  Even simple things like cholesterol medication can create muscle aching, for example, and a different cholesterol medication can be tried. 

If you think your loved one has developed new symptoms, make sure to report these to your medical team and to discuss potential drug side effects and/or interactions with your loved one’s doctor.  If your loved one has dementia due to Alzheimer’s, please visit the Alzheimer’s Association, key words: Medications for Memory, Cognition and Dementia-Related Behaviors.

Many drugs, and their side effects, are searchable online through the National Library of Medicine (USA) or reputable clinics like Mayo and Cleveland Clinic.

A topic that comes up often in Support Group is that of confabulation—when a loved one with dementia addresses an incident with their care partner that never actually happened.  Like hallucination, confabulation is an occurrence when our loved one believes something happened when it didn’t.  “Why did you yell at me in the car?”  “My brother showed up drunk last night.”  The caregiver knows he never yelled; she knows there are only sisters in the family, no brothers.  What to do when a loved is convinced they are seeing something that isn’t there or experiencing something that hasn’t happened?  Such occurrences require skill and fast thinking that can develop over time—it isn’t hopeless.  Validation is the key. 

I often tell the story of my mother and I sitting at her table one evening after supper.  She is staring out the kitchen window that’s behind her chair, and she begins to describe a very large bird in her yard.  It is green, has a great beak, and stands about three feet tall, according to my mother. It’s quite vivid.  She wants to know if I see it.  The skill here is not to contradict her, but also not to “lie” in a way that my mother will pick up on.  I tell her I can’t see it, yet.  I am sitting opposite her, not near the window.  I lean side to side, looking from my chair, peering out to see if I might see this fantastic bird.  Mom says it’s about 80 pounds.  “Don’t you see it, Leigh?”  I tell her I’d love to see it, but the side of window is blocking my view.  Mom’s dementia doesn’t allow for logic.  She doesn’t ask me to come to the window for her view, but if she had, I know I would have seen her bird.  As it was, she was satisfied that I validated her experience, rather than trying to convince her no such bird exists. 

A good lie prevents agitation and actually allows the care partner to engage with their loved one at a different level.  It allows us to be closer to our loved one by entering into their world with them.  Redirection would be needed only if our loved one were in danger.  I had to follow my mother out the house once as she ran to a neighbor with a twenty dollar bill in her hand, convinced she had to pay her for cutting my mother’s lawn.  Luckily, the neighbor simply told her they were good, and Mom didn’t owe her anything. Again, this satisfied my mother, and she returned with me to the house. 

A good lie can be very helpful!  Don’t be afraid to use it.  It reduces stress and increases trust.    And, in the long-term, the need for lying often decreases as the dementia condition progresses and a loved one starts medications that reduce agitation and hallucination.  It is not a static condition.  For my part, I love the story of my mother’s giant bird.  Whenever I recall it, it reminds me of that moment when my mom and I were sharing something that was, overall, quite special. 

Dementia challenges us in our concept of what it means to love.  Love is many things, shaped in many ways, and it means different things to different people.  Yet, “to love” is a verb that is inhabited by action and intention.  When there’s a fire, some people have great courage and run toward it; others have great fear and run away.  Neither response is more right or wrong.  Still, I wouldn’t want a reluctant or unskilled firefighter at my burning home! 

I recently asked a caregiver if a family member loved their person who was journeying through dementia.  I pointed out that love means showing up, it means being present to the loved one’s suffering.  This is compassion.  To love is to act within that love, to be the agent of compassion.  This idea appears repeatedly in literature throughout time.  This does not imply complete selflessness, for caregivers must also be certain to take good care of themselves.  It is a balancing act, that is certain, and yes, “it takes a village.”  If you don’t have one, create one.  Find those who will help you.  You will need your Helpers. 

Some families have fissures that can be navigated in the interest of their loved one, sometimes with the help of a skilled therapist.  Other families are more broken, fractured by such problems as substance abuse, or rivalry and binary thinking, for example.  Such trouble or conflict that is not in the best interest of a loved one experiencing dementia can interfere with them getting steady, committed, quality care.  Such kinds of problems are difficult to cope with when it comes to dementia striking a family.  Dementia is fluid, not fixed, and it is a crisis that will throw a family into sudden, absolute emergency when a loved one’s simple forgetfulness turns into getting lost while driving, or no longer being able to prepare a meal or operate the coffee maker, or even butter a slice of bread.   

There are many ways to traverse the difficulties and hilarities dementia will present.  It is best to let a capable family member help when possible, and to support that member in all their assistance.  It helps to know things will go better when you can think outside of the box, drawing on that creative thinking and compassion which are a caregiver’s best tools, easily employed, because they come from a place of active love.  Certainly, not all have the emotional intelligence, time, or proximity to travel with their loved one through the dementia journey.  But  for the compassionate, the willing, and those who have the courage to run toward, it can be a profoundly rewarding experience.   

It is hard to see our parents (or other loved one) so helpless and vulnerable.  As an adult "child" it feels unnatural and even difficult to step into role reversal, suddenly helping with soiled clothing, and toileting, for example.  

One time my mother came bursting out of her bathroom, buck naked, being prepped for showering, just to tell me something.  She had no awareness of her nakedness and I had to accept the pain and humor of such similar incidents in which my mother's absolute modesty slipped entirely away.  The yes/and of it all; the constant ambiguity I met with while wading ever deeper into dementia caregiving as my mother journeyed on.  

What helped me with embarrassing moments (embarrassing for me) was seeing how clearly it mattered to my mother that I was present to her and willing to help.  She didn't notice the role reversal, but one time praised me for, essentially, going "above and beyond" when staffing was short, and I helped her with a particularly messy accident.  Mom couldn't quite get the words out, but I understood her.  It was very clear that I was a comfort to her, a reassuring presence.  What one time felt entirely inappropriate was destined to change as I became not just daughter but a person in service to my mother.  

In some moments the daughter had to be put aside.  In all moments of doubt, though, I reassured Mom that everything was okay, and she did nothing wrong (as was often her worry).  She was okay, I’d say, and didn't have to worry.  Everyone around her cared and was there to help her, including me.  This messaging soothed her, often, especially near the end when she still understood about her condition, her environment and circumstance, couldn't express herself or help what she might do, but knew she was in a pickle, saying to me in a moment of clarity about 11 months before her death, "I said, God, how much more can I stand?"