Checking in with Sue

As the world is dealing with COVID-19 fears and the lifestyle changes that accompany the pandemic, people are focusing on our most vulnerable citizens, frail and compromised seniors.  Several of you have reached out to ask about Sue, and I thought I'd post an update about recent developments.

Members of our family have been extremely critical of every decision I've had to make as her caregiver.  I naively believed far-flung cousins, aunts, nieces and nephews would join to rally in support when it came time to care for any one of us, and I was wrong.  It's not uncommon, unfortunately.  Separate from the devastating actions of my brother, geographic distance and resentments over disagreements that happened years ago have taken a toll on our family dynamic, and now prompt the following statement:


*Refrain from judgment, criticism and gossiping about the care of your loved one.  Show your support for them instead by asking the person/people who care for this person for factual health and emotional well-being information.  Get the full story before rushing to uninformed judgment.  98% of caregivers take better care of their loved one than they do themselves.  They deserve the benefit of the doubt and should not be put in a position that requires them to defend their decisions without evidence of ill intent.  Assume nothing.  Ask.  

A team of compassionate people have come together as a team to provide Sue the care she needs, and I lead this team.  Like all who know her, her caregivers, doctors and other residents in the group home where she lives have come to love her.  She has the master bedroom and a private bath in a house nestled in a quiet neighborhood.  The backyard's stucco fence keeps Sue safe while giving a family of quail and other birds a place to strut to and fro.  There are hummingbirds visiting three feeders, a pomegranate tree and two citrus trees, which mom fusses over whenever they fruit.  It is a good compromise, with fewer residents and a single 24/7 caregiver that speaks limited English.  On the other hand, it is not the institutional setting that no assisted living facility can avoid.  There are no door alarms sounding, no limitations on dining hours and it doesn't smell like a hospital.  

She has some really good days and some rough ones, but is largely very content.  She was hospitalized in early March for 5 days.  This is the third incident where she presented the same way:  Suddenly unable to speak, followed by random gibberish a few hours later, then a gradual improvement over 48 hours to a level of acuity slightly lower than where she was before the incident.

This most recent incident went like this:  Unable to speak upon waking, staring blankly into space and unresponsive to questions, paramedics transported Sue to the hospital.  COVID-19, Infection of any kind and stroke were ruled out after extensive scans and testing.  Although she improved steadily over the next 48 hours, she had two late night psychotic episodes of concern.  Her heart went into atrial fibrillation, and she ripped out her IV and heart monitor and tried to run down the hallway.  Nurses had to use soft restraints and sedate her to keep her in bed.  Mom has no memory of these late night episodes, and now doesn't remember the hospital stay at all.

Doctors believe these incidents might be a triggered response to stress.  While reconstructing the days leading up to this and previous incidents, we discovered a pattern in her behavior.  A significant increase in cell phone use; calling and texting family members had occurred right before ALL THREE incidents.  Sue was discharged with suspected TIA and advised to discontinue cell phone use to avoid stress.

At her group home, the management and caregiving team acknowledged and agreed with the hospital's assertion that Sue had experienced a marked increase in stress directly related to cell phone use in the days leading up to the TIA.  The home's manager sent me a letter requesting that Sue discontinue use of all electronic communication devices except the house phone which can be monitored.

It wasn't easy to take away her ability to communicate with friends and family, but her cell phone use has become increasingly problematic.  She has made repeated calls to extended family members, only to rant incoherently and cause alarm.   Authorities threatened the care home with fines due to Sue's repeated 911 calls, where she apparently asked the operator who had sold her house, demanding answers.

These are hard decisions to make, and with each decision she loses some of the freedom and independence that she holds so dear.  Depriving her of anything, be it her cell phone or a glass of wine, is a last resort.  I believe she should enjoy whatever she wants to eat, drink (within reason) and do.  There is no cure for Alzheimer's, but she still enjoys sunsets in the backyard, watching the hummingbirds and quail. She loves playing with her (formerly my) dog who is overjoyed at every visit.  We watch videos on the ipad and talk and work to assemble jigsaw puzzles that remain unfinished.  

And so, we move forward. Together.