Dignity & Grace

Living with Alzheimer's and Parkinson's makes every day, every conversation, a challenge.  Merle, thankfully, is still having many good days.  Her balance is a little shaky, her world a little narrow, and she can't be trusted home alone, for sure.  But the good days, in our world, mean she can track events from the day.  She remembers routines the two of us have established together.  She can talk, in her own way. 

Merle switches words frequently.  Most people- including her own family- are willing to brush off her crazy sentences as sure signs she's on the fast track to 6 feet under.  I know, however, that her brain knows what she wants to say.  Unfortunately, the lines between brain and mouth are crossed and frayed.  So, instead of "I need to go to the bathroom," I may get "Pens! Let's go Pens!" or, "Noise... in my..." with a wave of the hand.  It's frustrating to both of us- she thinks I'm crazy or not listening, I'm scrambling to figure out what she wants and needs.  And, admittedly, her default phrase when things don't go right is "It's killing me," repeated loudly and with as much emphasis as possible.

It's easy to ignore her, to brush her off as a side-show, especially when you're busy.  I've seen people do it time and again.  I try not to, but I'm not perfect.  So, I entered into the last two days of doctor's appointments with trepedation.  Doctors are busy people.  The ones with the answers would be me and/or the boss.  GP's are notoriously overbooked.  But this office- from the woman at the front desk who told me what a blessing I was to the doctor himself- was amazing.  The nurse spoke to Merle first, and me second.  She calmed Merle's nerves and explained exactly what she was going to do.  She even- miracles of miracles- managed to score a blood pressure reading over Merle's frightened yells. 

Then, the doctor came in.  He took time- time he probably didn't have- to talk to Merle, tell her how good she looked, ask how she was feeling.  Only after that did he begin to examine her, and answer my questions.  When he decided to refer her to a dermatologist for the skin tags that have been bugging her, the doctor told her what was happening.  I may be in charge of keeping her healthy, and the Boss may have power of attorney, but in his eyes, Merle was still his number one priority.  It's a little thing, but putting her first made a world of differnce to Merle- and me.  Dr. L, you rock! 

We were lucky enough to get a cancellation appointment for the dermatologist this morning.  Again, awesome staff.  Doc got nearly down on his knees to speak to her and look her in the eyes.  He didn't send us packing when she screamed and hit him while freezing off a skin tag.  The nurse reassured me it wouldn't be so bad when I warned her the numbing process would be met with resistance, to say the least.  Yes, Merle screamed and threw a fit, bossed people around, and may have disturbed patients in the neighboring counties.  But the nurse stayed calm, cool, and collected.  Even the resident didn't run out screaming.  Even in the midst of the freak-out, every staff member spoke to her.  Treated her like a person.  Gave her power to say no and be heard, even if I would overrule and convice her the procedure was necessary. 

I try, every day, to treat Merle with dignity.  To allow her to grow old with grace and respect.  I can use all the help I can get, and the staff at both doctors' offices made my life exponentially easier these last two days.  For that, I am forever grateful. 

Welcome to my world.

To really understand the stories to come, you have to know a little about me.  I'm 29.  After six years of using my very expensive religion degree at a church and private high school in West Virginia, I moved to the midwest to be closer to my family.  Admittedly, it was also a convient escape from my former life as youth minister and high school teacher.  So, I packed up all the worldly possessions that would fit in my car, with no plan for job and only a bed to crash in at my parents' house, and set out on a new adventure.  My only real requirement for a  job was that it not in a church.  I had burned myself out on politics and found the idea of setting foot in a religious establishment of any kind completely unappealing.

After a few months of rest, relaxation, and recuperation, I was ready to really get down to the job search.  The problem I found was I was too overqualified for the jobs I wanted.  I really didn't like the idea of working in an office full time (I'm not a cubicle person) and working with kids still sent me into a tizzy.  Oh, I was busy, for sure.  Volunteering at a couple organizations, working at the local football stadium, raising a puppy for an assistance dog group... I filled my time.  Eventually, though, I knew I would wear out my welcome with my folks, and I really needed to be working.  I don't do well sitting still.

Eventually Craigslist led me to a woman looking for a live-in aide for her mom.  After a couple of interviews, background checks, and a few days spent working with my client under careful family supervision, I was hired.  My client, Merle, is a lovely 89 year old woman living with mid-stage Alzheimer's and Parkinson's diseases.  She moved into her daughter's house a few weeks before I came on, after the family and her long-term significant other realized she wasn't safe on her own and he couldn't take care of her by himself.  So, now it's a houseful- me, Merle, her daughter (my Boss), her grandson (Tall Guy), and his girlfriend (SoCar).   Yeah, I'll use nicknames for almost everyone.  But I really am Jessi.

Our life is full of adventure, random conversations, and occasional hysterical fits.  This blog is an attempt to capture the wonderful and funny, vent the frustrating, commiserate with other caretakers, and give what help I can for the random shortcuts, hints, and assistive devices that work for Merle and I.