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Dementia and Inherent Worth

2/22/2019

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My faith calls me to affirm and promote the inherent worth and dignity of every person.  As a hospice chaplain I do this for my patients, many of whom have end stage dementia. Since beginning work as a hospice chaplain I have learned a great deal about how to affirm and promote the worth of someone with one of the diseases lumped together under "dementia."

Because dementia can leave people so vulnerable and can render them helpless, caregivers can tend to treat them like children.  I slip into this sometimes, talking to adult human beings as though they are children. I do realize that this is the opposite of affirming their dignity and so work to avoid it.

I think it is easier to infantilize people the less we know about who they were before the dementia took hold.  It can be hard to find who they were before if the person has no family or friends.  Sometimes they do have family who in their grief  can't bear to see the person they love so diminished by the disease.  Sometimes they "check out."  I don't blame them.  The loss one experiences in dementia is awful and ongoing.

It can be heartbreaking even for me to learn that the person who can no longer formulate a sentence was once a brilliant writer, the person who can no longer play the piano was a gifted musician, the person who is now bed bound was once an athlete, the person who can no lift a hand used to work in construction.  It can be hard to learn that the person who aggressively resists care was once a person who helped everyone they met.  If it's hard for me to learn these things I can only imagine what it's like for those closest to them to witness the unravelling of that amazing person.

Thinking about this and feeling sad this morning it hit me that what that person did before the disease still shines, undimmed. Their accomplishments remain theirs.  Their best qualities will always be their best qualities.  The love they offered, the life they lived, who they were all shaped those around them in positive ways that persist.

I have come to believe that the core of who the person was remains intact.  They are still in there.  Finding out what they loved can unlock that core, can free them.  Early on I had a patient who had become nonverbal.  I kept reaching out to their child and eventually found out the person's favorite musical artist. The next time I saw the patient I played songs by the artist and to my surprise, they started mouthing the words.  They died shortly afterwards, but knowing they had that moment of joy in favorite music was comforting.

It turns out that well-loved songs, poetry, prayers can remain intact for a long time.  Because they were well-loved, they can express what that person valued most and capture their core.  Another patient was a fighter pilot who later flew for airlines.  One day I found and read them a poem about flying and  this patient visibly relaxed and brightened. It turns out the patient had memorized that poem and loved to recite it.  It expressed the experience of flying so core to this person's identity. We read it at the memorial service.

Even when we can learn nothing about a patient, cannot get at their core, we can still affirm and promote their inherent worth and dignity. We do this by treating them as we would want to be treated in the same circumstances. We do this by practicing respect, compassion, and kindness to them and to their families.
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Puppy Love

2/14/2019

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Buddy in a Hobbes-like pose. As in Calvin and Hobbes.
I told myself the puppy was for the men in my family.  My son had always wanted a dog, but as a single mom and minister knew I couldn't care for one.  Besides, I had always considered myself a cat person, not a dog person. I couldn't have a cat because of my son's allergies.

In 2014 I married a dog person who had to give up his crazy cat when we moved in together.  He didn't lobby for a dog but kept speaking fondly of ones he'd had in the past. Then 2015 came along.  It was a tough year.  Both of our mothers became very ill and died within two months of one another.  

We needed a lift. So I used some of the early inheritance money to buy the guys a puppy.  Looking into breeds that didn't shed we settled on a Golden Doodle. We soon found a puppy from a family that bred one litter a year, timed so the puppies could go to new homes around Christmas time.  Their kids played with the puppies until they left and the money helped fund the holiday.  

We met the puppy early in December.  The first thing he did was scamper between my legs.  Endearing.  My husband picked him up and the puppy started licking Rich's face.  It was a done deal.  The puppy came home a couple days after my mother in law died, and few days before Christmas. We named him Buddy after Buddy the Elf from the movie, and a favorite dog my uncle had also named Buddy.  It fits.
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We had dogs growing up on the farm but they were outdoor, working dogs.  Prince Harold (Harry for short) was only allowed to come inside during bad storms, where he'd shelter with us in the basement.  Having a puppy in the house was a (sometimes annoying) revelation.  But who can resist a puppy, especially a goofy one who loves to romp in the snow like I do? How can you resist a dog who is a "leaner?" This is a thing, for you un-dog-savvy people.  It describes a dog who will lean into you if you sit or stand next to it.  If Buddy was a person we'd say he is very affectionate and likes to cuddle.  Sweet.

So it turns out I am a dog person.  Buddy turned me into one. Here are some things I have learned along the way.
  1. ​Pay attention to squirrels.  I have enjoyed watching them in the past but never so much as now. They are joyful little beings.  
  2. Spend time outdoors.  Love it.
  3. Meet your neighbors.  It's a good thing to do.
  4. Play, every day, as much as possible.  Remember that you have to share the toy in order to play the game.
  5. Do things that make people laugh.
  6. Watch out for your people.  Bring them together as much as possible.  It's better that way.
  7. Greet people you love with joy.  When you get bigger don't run between their legs, though. It can upset them.
  8. Cuddle as much as possible.  Be affectionate.  Love.
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    Author

    Poet and minister 
    Tess Baumberger reflects on spirituality and ethical living 
    in our evolving world.

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