They're Still In There

Washington DC

Lee Ann Gerleman is a nurse who’s worked for many years in long-term Alzheimer’s care units and has been making frequent comments on this blog.  I’ve collected and (heavily) edited some of them here. 

Through the months, I’ve written about my curiosity about consciousness in moderate stage Alzheimer’s. (For the definitions of the various stages, see here.) Lee Ann has responded:    

People with dementia are still just regular people. Their reality, however, seems spread out over time. If you know the patient for a long period of time, you can get the full story. It just seems as if things have gaps between them. And the patients are just as loving and needing of love as anyone else. They soak up love like a sponge. For someone like me caring for patients with dementia, a locked unit in a nursing home is a love place. You can hug more, love more, and it is gratefully reciprocated. So this disease is just a continuing part of the journey.

What so many people don't realize is that even quite demented patients are just the same as the rest of us.  They may be forgetful, but inside their consciousness, down where it really counts, they still have their inner conversations going, just like we all do. 

Lee Ann sent me an email with her thoughts on the subjective experience from within Alzheimer’s.

Some people talk about how it would be such suffering to be lying in bed, incontinent and so on, about how we "might as well just shoot 'em.”  They’re equating a different way of interacting as being a bad way.  But if patients are comfortable and no longer embarrassed by incontinence, they sleep and remember good times and bad.  Maybe their memories are not as deep as ours, but the love and memories are still there.  Like the patient whose great granddaughter comes and walks her around outside.  She doesn't know who that little person is, but she knows she loves that little girl.  That is true happiness, being deeply in the moment with a little girl who is taking very good care of you.  All the little friend wants you to do is smile and be happy.

She continues in commenting upon my post “Why Not Suicide?.”

If we indeed "go backwards" in our cognition, then being the two-year-old child in our minds wouldn't be any worse than being a two-year-old 83 years ago.  There’s wonder in everything around us.  And someone with the cognition of a two-year-old would enjoy things just as much as anyone.  With a two-year-old, of course, there’s joy in watching the child grow and mature.  With an 83-year-old “child,” it’s heartbreaking for family and friends to see their loved one going down and down.  But that 83-year-old lives in the present, and there are things to see and do.  Watching a 3-year-old picking a tomato is no different in awesomeness from watching an 83-year-old pick a tomato with the same amazement.  Someone with AD is just going the wrong way on the highway of life.  But for them, it’s still the same highway.  They experience love, caring, amazement, seeing wonderful things, happiness, just as anyone does.

And then there are the truly amazing events that leave you scratching your head:

One little woman used to steal my nurses notes—all of the little scribblings that a nurse would make to remember things.  She would take my scribblings over to the grand piano, sit down with a flourish and play for hours from my nurses notes as if they were sheets of music.  She never missed a note, played probably four or five different sonatas—Bach, Beethoven, and others.  If I tried to take my papers back, she would get all upset, so I'd let her keep them as long as she played.  When she was done, she’d bring the papers back to me and put them on my cart with a quiet little thank you.

And other surprises are just humorous:

One woman was discussing with me how wonderful her husband, Tom, had been for 65 years, never a mean word, always loving; she looked like a bride, thinking of her loved one.  So ten minutes later, her husband came in to visit and I hoped she was still on the same wonderful bride-journey, so I said, "Tell this man about your wonderful life with Tom.”  She looked at me in shock, and said, "OMG I married him?”  So much for giving him a pat on the back.

Care givers are sometimes understandably bitter about all the patient’s friends disappearing as the disease worsens, abandoning patient and caregiver to the disease.  Lee Ann had a different take.

Alzheimer’s is, after all, “The Long Goodbye.”  When patients initially go into a special care unit, their families are usually very supportive, and come for all of the fun activities, etc.  But about half the families then begin to come less and less, and I think it’s because that as the patient begins to move away more, the family adapts by moving away also.  They are adapting to the changes in the relationship.  Which is good for them.  Family members naturally begin to withdraw somewhat, as they spend more time out in the world.  It’s hard to explain.  They don't love the patient any less, but they learn to change with the times and go out into the world more.

And other times, Lee Ann seems to feel deeply privileged just to be present to the moment.

I sometimes find it very touching to be sitting with an AD patient and their adult child.  Of course, the son or daughter is upset that they aren't being remembered.  But then I ask the patient about her children.  It is amazing to watch the patient glow, talking about her child, the school work, the play, Christmas when he was five, the smiling and obvious love.  The adult children were focused on losing Mom, but when they can see their Mother's obvious love for them, it does help, I think.

In the end, of course, we don’t know the subjective experience of the person with moderate to severe Alzheimer’s.  But, at least for Lee Ann Gerleman, the potential for rich relationship remains.