Caregivers try to fill the whole spectrum of needs, and it’s impossible.  It’s impossible for any one person to have the skills, knowledge, time, and general wherewithal to oversee medications, medical care, finances, cooking, cleaning, home repairs, and safety while also providing transportation, social interaction, entertainment, and psychological support – but if you can’t fill all of the needs, you’ll have to deal with the consequences.  Your person forgot to mention a little leak from the toilet, and now the bathroom needs an expensive repair.  Your person sorted the mail before you saw it and threw a bill in the trash, and now he’s being charged a hefty late fee.  It doesn’t matter to the plumber or the utility company that this person has dementia and you’re doing the best you can.  And anyway, it feels like your fault because it’s your responsibility, and it’s your responsibility because there is no one else and no county, state, or federal program to provide useful assistance. 

I lived in terror that a car accident or illness would take me out, and David himself would fall through the hole of his needs.  I tried not to think about what could happen by the time a hospital reached Fiona, and how much more impossible it would be for her to manage his care long-distance.  I ordered paired MedicAlert tags: if something happened to me, the medics would know to check on David; if something happened to him, the medics would know to contact me.  That system was far from fail-safe, but it was one measure we could take in the face of too many risks.  It gave me just a little peace of mind.

Since phones and time were often mysterious, it was hard to come up with reliable everyday safety measures.  David came to my house for coffee in the mornings and for a tv show in the evenings.  It would have made more sense for me to walk to his house, but he felt trapped in his house and needed outings, however short.  I could see his house from my window, and I generally knew when to expect him.  If he didn’t show up, I could walk over and check on him.  So I clapped eyes on him at least twice a day, one way or the other.  But there was no peace of mind to be had, day or night.  Sometimes he would show up with his bowl of oatmeal long before dawn, thinking it was time for breakfast.  Sometimes he wouldn’t show up at 5 p.m. because he’d gone to bed at 3, certain it was night.  Daylight wasn’t always a helpful clue, and in any case the daylight hours are few in the long Minnesota winter.

The loss of clock time happened early in David’s case.  Once lost, it was lost forever.  Other manifestations of LBD came and went.  After months of a pronounced “Lewy lean” – listing to one side, especially when sitting – David sat straighter for years, then slumped to the side again late in his life.  Drooling is common in people with LBD, but that lasted for a year or so and then disappeared.  Other symptoms fluctuated day by day.  The Parkinson’s physical therapy program called “Big and Loud” aims to strengthen the soft voice characteristic of Parkinson’s.  At times David spoke at his regular volume, at other times so softly that I could barely hear him.  Hearing in the car was especially hard because it was my passenger ear that had gone deaf.  Even with hearing aids and a remote mic, I could make out only a word here and there over the noise of the engine.  “Big and Loud” also encourages long steps and helped to ease the shuffling gait, but sometimes his steps barely inched him forward.  On some days, he froze and couldn’t move forward at all for a time.  “My foot weighs 50 pounds,” he’d say.  Both of us would stare at the heavy foot.  Eventually, with a lot of effort, David would be able to lift it.  Symptoms could shift in a matter of hours, sometimes minutes. 

As the pain specialist told me when he should have been addressing David, pain from a herniated disc complicated the Parkinson’s symptoms.  A cortisone shot relieved some of the pain, but the procedure so terrified David that he resolved never to have another.  The pain waxed and waned, and the heavy foot became a drop foot.  An ankle-foot orthotic brace helped him avoid tripping, but it made putting on shoes an even greater ordeal.