A Son Asks, “What Do I Do When You Get Dementia?”

This was not an idle question, but it took me by surprise.  My 25-year-old son and I were filling out his advanced directive at his request.  He was heading into an adventure as an associate producer with a film company exploring remote and deep caves in Mexico.  I was thrilled that he had thought to complete the paperwork and have the conversations with me about any of the what ifs.  I just wasn’t totally prepared for where the conversation would go.  Now we were into remarkable territory.

I was finishing my Master’s degree, feeling downright chipper and healthy, though admittedly taking care of my aging mother.  It was the perfect time to ask.

My first thought was to laugh – what makes you so sure I’ll get dementia?  Fortunately, I don’t think I spoke that out loud.  The truth is it could happen at any time and to any of us.  And the best possible thing was for him to be armed with some answers.

So, we talked.  And what follows is what I said to him.  For myself, not anyone else, my answers are based on what means the most to me.  Maybe not the right answer for anyone else but we all can answer what our limits might be.

I am a very social being.  I need company, stimulation and relationship with others. Preferably people who are kind, thoughtful, social, engaging and challenging – not forceful, demanding, scolding, shaming, or pushy.  I kind of fight back against people being bossy.  So, the number one thing to ask yourself about me when the dementia becomes severe – is she able to be in relationship with me or others?  Maybe just the cats?  Almost good enough.

What does a relationship consist of?  In response to you, do you see words, gestures, eye contact, nods, blinks, or genuine smiles?  Any one of those would indicate an ability to communicate with you if you are patient enough to wait for them.  Without those – I am not in relationship with you – I am simply reflexive and that’s not good enough.

Remember that I also like real air – fresh, outside the window, breezy, unconditioned and unscented air. Dry or humid, cold or warm, but real.

Remember that I like silence but love children’s books.  Their wisdom should get a rise out of me.  If there is no wry chuckle to Lazy Mazzie and Horton the Elephant or Alexander in the Terrible, Horrible Very Bad Day – then I am simply not there.

And when I am not there, you must maintain your options.  These include NO preventive care.  No flu shot, no pneumonia shot, no medications to prevent my ticket to freedom which is what the flu, pneumonia or a heart attack represents.  Bring them on.

And here’s another angle.  If I’m not here and I can’t or don’t feed myself, then don’t offer it.  Don’t go for that reflex opening of my mouth like an infant just so I can robotically chew and swallow, prolonging yours and my agony.  Not eating and not drinking are the body’s way of saying thank you – it has been more than good enough.

This was one of many conversations I have had the joy to have with my children and friends.  Having had them, we have laughed, pondered, and searched our souls.   We have completed Advanced Directives, filled out Five Wishes, signed Organ Donor cards, and would easily complete a POLST form when the time comes.   My preferences are not for everyone.   But I feel confident I have left my family and friends with the least ambiguity and least chance for lingering guilt or conflict. Atul Gawande, author of Being Mortal, has said in essence he would be fine as a brain in a jar as long as his brain was still buzzing.   His wife has said she is fine being a body in repose as long as she appears content and happy without a thought or care.  In his book he describes the young daughter who knew her father wanted to be sure he would come out of life-threatening surgery being able to intelligibly watch football and eat chocolate ice cream.  The important action is to make those preferences clear.  We all have the right and opportunity to take control and make our wishes known. Make them specific.   Make them actionable.  We do not have to leave the decisions vague, tortured or conflicting for those who must speak for us when we cannot speak for ourselves.

This year many of us will be together with friends or family.  Maybe no one is ill or suffering, and it feels awkward but by far, this is the best time to ask those questions – Mom, Dad, What do I do?