Dementia, Alone or With Family

Juxtapose.  The dictionary will tell you it means "to place two things side by side to compare and contrast."  That truly is the first and maybe best word that I came up with to summarize a small window of time-- last Thursday night to Friday afternoon, to be precise.

Within that window I was interestingly shown the many sides of dementia and/or Alzheimer's.  And how the pendulum can swing both ways depending on how a sufferer is living with it.

I've been learning about dementia for a while now.  I'll only briefly mention the study of it in my textbook for a neuropsychology class in graduate school. Neurology is fascinating, we all know that.  But that's where I stop my nod to academia. That is not truly how I've come to understand dementia.  Our sweet grandma lives with dementia, and we've been attempting to navigate through it with her for several years now.  Others who have been on this journey with a loved one know it is so painful to watch.  So very very painful.

Last Thursday night my mother and aunt were my grandma's champions.  She was showing signs of a virus or infection, and they took their 92-year-old sweet mother to the ER.  Grandma is in assisted living where full medical care, to my understanding, is not available.  She definitely needed to move up a level or two in care due to her symptoms.  These sisters, who are both grandmas as well, sat by her side for hours to be certain she was not fearful, didn't pull out her IV, or that she didn't try to escape.  These are all incredibly common and normal behaviors when your memory is so impaired that, basically, everything around you is "new" every 20 seconds or so.  The disorientation is extreme.

By the time I was able to come sit with Grandma, my mom and aunt were tired and hungry so they both had a short dinner break.  They both ended up staying the night with Grandma in their clothes and the cot they were able to order from the hospital did not even arrive until the next morn.  Oh, and the next day they repeated all of this, as they took turns leaving so one could shower/rest/eat.  Grandma got upgraded to a bed with an alarm, but without her loved ones there, she was scared, combative, and ready to escape.  Her eldest son also drove into the city to take a "shift" of sitting with her.

So, the day after I had spent time with Grandma, singing little hymns to comfort her and just letting her know she was safe, I was doing my regular duty at home. I was caring for my very young children and Tanner was gone to work.

Now, I need to give brief backstory before I tell you my next encounter with dementia.  There is a woman living directly behind us with dementia.  There is likely other serious diagnosis attached to that, we will probably never know, but her behaviors that we've seen indicate that. In the short 10 months we've lived in this home, there are many behaviors that can draw this conclusion, yet I'll only highlight a few.

Her house is grand, old, and deteriorating. From the moment we started having family backyard time (it backs up to us and a chain link divides us), I grew fond of the Great Expectations-esque property.  She rarely comes out, but her house has many windows and no blinds.  She has curtains that she only draws when she is spying.  Ah, the spying.  We've determined it happens almost all the time.  You can see a head bob or a shadow behind a curtain whenever you go the backyard.  My husband spends the most time in the back room, as it is his office.  He has had few but memorable encounters with the petite, elderly woman.  Each one involves her shaking a fist at him and yelling curses and names.  She definitely thinks he is someone from her past, though we can't deduce who.  She once told him he was the "devil from hell."  We've learned she did this to the previous owners of our house. There is a pattern, and though I didn't let myself get obsessed enough to track it, I'd guess about every 3 weeks she puts on a large sombrero and dances around each window, often until the wee hours of the morn. She wears capes and robes and often shakes her fist at our house through her kitchen window.

Though afraid, I once walked around the block to check on her after we heard a questionable, loud sound.  "Is everything okay?"  Her glazed eyes didn't truly see me as she opened her mouth, where most teeth were absent, and said, "Yea."  Then the door slammed.

There is so much more to describe, but that gives you the glimpse you need.

For the past week, I felt my uneasiness about the situation grow.  I'd been discussing with my husband everything from whether or not she may have weapon access to what she'd possibly say to the kids if she ever approached them (she hasn't).  And the one gnawing at me:  what would I do if she broke in?

Well, the afternoon after I had been at the ER with grandma would answer that.

I was wrapping the baby in a big towel, the 3-year-old was finishing the draining tub, and I went to the rocking chair in our front room.  I suddenly heard a "ruckus" approaching my porch until there was loud, frantic banging on our door.

"Open this door!  You are the devil!  Open this NOW!" she cried.

I only had to see her flowing, white hair to know who it was.  My fingers steadily dialed 911 while my heart beat in my throat.  I hugged the baby as a slunked back into a room where she couldn't see any of us.  She turned the doorknob with urgency (locked, yes!).  "Let me in!!"  She proceeded to bang on windows around the house.

Police and fire were there quickly, and when all was said and done, they said I did the right thing.  Of course I wrestled in the aftermath....really, call 911 on a little old lady?  Turns out, she turned violent on the officers, including smacking one upside the head with a heavy ashtray.  My police relative/friend told me from experience that a tiny woman in a psychotic state can get much stronger! She thought she was tracking down her sister, for whatever reason.  She called all the police and firemen devils.

There are so many more details, but I'll summarize to say that the 911 call led to the discovery that her water and electricity have not been paid in months.  The water was already shut off (thus, she hadn't bathed in a long time) but the electricity was still on grace period.  She was taken in to be washed, treated, and medicated.  This apparently is just one of several occasions when they've gotten her back on meds for a few weeks, only to return her to her solo living.  Oh, and we called 911 the next night, too....we witnessed two men burglarizing her home!  (insert heart in throat again).

You may be asking....where are her children?  A friend?  A long lost niece?  The police (and even my husband) have tracked down kin before....only to hit dead ends.  No one will have anything to do with her. Not even her daughter who lives about 6 miles away. My fear of her has grown much more into sadness.  And frustration.  I'm personally at a loss right now as to how to help when she returns since she is often hostile and/or having an episode.  And of course the safety of my babies is top of my personal list.

But I share all of this to step back and observe the juxtaposition of it all.  I saw two faces of severe dementia, though not exactly alike, but both very serious.  Grandma can definitely be an entirely different person when she is scared and having nurses poke and prod while doing their (very important) job.

But Grandma has people that love her.  Many.  Her family is going to sing to her, sit with her, hold her hand, give her grace.  Even when she is angry.  Even when she is so severely confused.

The woman who lives behind us does not.  She is in her own private hell and there's no family to reach through the flames and just comfort her.

I'm still reflecting on all of this.  Still praying about it, too.  I just want to share with you, my friends, who may be at the early stages of the dementia journey with a loved one.  Every time you just sit with her.  Every time you hold her.  Every time you just let her ask the same question again (and again) only to smile and answer....you are doing SO much for her.