Welcome to House of Light, a blog produced and managed by the staff of Casa de la Luz Hospice. Casa de la Luz ("house of light" in Spanish) is a locally owned and operated hospice, serving the city and surrounding communities of Tucson, Arizona. Through this blog, we hope to offer education, information, and support about caregiving and hospice care to terminally ill patients and their loved ones. For more information, visit the contact us page.

Monday, May 21, 2012

Caring for Parents with Dementia

Note to readers: This story is not meant to be a guide, self-help list, or how to re: moms getting ready to die. It’s one individual’s recollection, a dabbing of love on a not so fresh yet hopefully healing wound.

The assisted living facility was on an unassuming tree-lined street, opposite a neighborhood park.  Its front door opened to an anteroom of sorts, complete with two loveseats forming a popular “conversational grouping.”  The space was not fancy or impeccably furnished, but was clean and functional for the residents and staff.  The venue, however, familiar to me due to previous visits, was of minimal importance. 

On this visit, my sister Linda and I travelled together from Tucson, flying into Chicago’s Midway airport.  On the south side of Chicago we rented a car and left Illinois, entered and left the northwest corner of Indiana into Michigan.  We crossed Michigan from west to northeast to arrive at our parent’s vacant home late one April evening in 2007.  Their winterized cottage sat on a cliff overlooking Lake Huron, on the outskirts of a small tourist town.  Our parents’ “home” was now in the above mentioned assisted living facility, called adult foster homes in Michigan.  

We were making a semi-annual visit to see them.  I can’t recall now why we chose April.  Most likely it was a matter of convenience, since Mom and Dad were reported to be doing “about the same” per the facility staff.  Whatever the reason, I am forever grateful that the Universe/our Higher Power conspired to support this springtime travel. 
The following morning Linda and I set out for the facility, about 25 miles away in (another) rural Michigan town.  We called the facility en route, letting staff know we were on our way. 

We rang the doorbell, and a caregiver greeted us. Mom and Dad were ‘awaiting’ our arrival in the anteroom. My mouth fell open upon seeing them. Within 10 minutes I was fighting back tears and having a difficult time not bolting from the facility.  

Historical perspective #1:  My dad had been diagnosed with Alzheimer’s in 1994 and moved into this foster facility in early 2004 after a brief and horrific initial placement experience elsewhere.  I had been involved in looking for facilities for Dad in the summer of 2003 and had vetoed this facility for its lack of aesthetic appeal.  How wrong I was, and how grateful I was for the staff and their care as Dad’s stay lengthened into years. 

Historical perspective #2:  Mom was diagnosed with multi-infarct dementia in 2005, and I had actually been the one to ‘move’ her to dad’s facility in spring of 2006. I refer to the 175-mile moving trip as a “Thelma and Louise” adventure for Mom and me—minus the convertible, alcohol, hot guys, and full consciousness of my travelling partner.  Other than that, a movie remake!

As I “took in” my parents seated on the loveseat that morning, my brain was desperately trying to correct the information my eyes were providing.  My dad’s decline had been gradual yet steady, so I had more or less adapted to the progression of his Alzheimer’s visit to visit.  What I couldn’t seem to grasp was how significantly Mom’s status had deteriorated.  Multi-infarct dementia has a much less predictable disease progression, and while my head held that fact somewhere or another, my heart was definitely experiencing a delayed ‘understanding.’ Mom’s eyes were closed, and the few times they did open, no true focus was evident.  She engaged minimally in the conversation, and showed no animation when any of her ‘favorite’ things were mentioned.  She could no longer walk unassisted, taking halting steps while leaning backwards.  Walking assistance for her consisted of holding her hands and pulling her along.  

Historical perspective #3:  My mother was one of the most grounded aka spiritual people I’ve known, in fact, irritatingly so.  She was totally about her husband and four daughters. She loved music and sang in some choir or another most of her life. She enjoyed reading and ballroom dancing. She believed in and lived a ‘body in motion’ life.  Lake Huron was her holy land, and she loved to garden.  Oh, and she napped most days after lunch, which made her ridiculously cheerful in the evenings.  

The woman, the mother just described, was not in the anteroom that April 2007 morning.  That mother had begun a process both internal and external, one unique to her.  Linda and I were privileged to have witnessed a small part of it.  OK, that morning we didn’t feel privileged.  We were horrified, frightened, indeed feeling very vulnerable and small.  When one of the caregivers announced that lunch was ready to be served, we couldn’t make our excuses fast enough.  We would leave and return mid-afternoon.   

The good news is that Linda and I are sisters in more than the biological sense.  Most certainly our biology and growing up together dovetail with our current powerful ‘sisterhood’ relationship. That evening, on the way back to our parent’s home, we stopped for take-out-something at the local bar/restaurant. Yes, we picked up some wine, and Linda insisted on a DVD.  We sat laughing and crying watching Little Miss Sunshine.  That evening of wine and entertainment and being with a sister/best friend did not change my mom’s course. However, it did seem to help Linda and I start to get our heads around what was happening to Mom. 

We did return to the AFH after lunch that first afternoon, and continued daily visits (not always together) until we careened off to Midway and back home to Tucson.  During those visits, no surprise, Mom wasn’t suddenly bustling about asking about the grandkids.  However, our initial shock took a backseat to an attempt to be present with both parents.  The key word here is ‘attempt,’ as the impulse to engage them, especially Mom, on a more familiar (and functional) level was powerful.  We had to remind ourselves, “This is where she’s at now…be with her where she’s at…” That was pretty much our mantra. 

Respectfully submitted by Patti O’Keefe-Downs, RN

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