Safety, safety and safety
People often ask – How did you know when it was time for Patti to move to a care facility?
Safety, safety and safety. Patti’s personal safety, our daughter’s safety and my safety.
In our own story when my wife first exhibited cognitive challenges with Multiple Sclerosis less than 7 years after her first major exacerbation her neuro told us such mental health challenges were not part of MS – until I just happened to return home and found our stove on fire while my wife sat at the kitchen table only feet away enjoying lunch. Was he guilty of not knowing or filtering medical information to maximize hope? Whatever – three people could be dead except for a simple twist of fate.
Soon her neuro suggested I start looking at long term care facilities when Patti’s cognitive problems began to dominate everything.
A risk to herself
Physical therapy following exacerbations was increasingly curtailed as Patti simply could not remember to engage her brakes. Physical therapists began to report her as at risk to herself.
Following an appointment with her primary care doctor he was stunned to learn from her blood work that Patti was doubling a medication. When asked about it she claimed it made her feel better when she took more.
He called me to ask that I put her medication “out of reach” and could I begin to take over administering her daily meds?
Soon I was playing God with an approaching squall line of cognitive thunderstorms. I believed the more attention I focused on Patti that somehow I could stem the tide. The old American ‘circle the wagons’ syndrome.
In reality I was more like the little Dutch boy sticking my finger into each new hole that sprung a leak.
Living then in a two story house, Patti increasingly fell down the stairs until we could remodel to create a ground floor apartment.
I began to get calls at work from people in the neighborhood that Patti was lost while out driving on her scooter.
Visiting with her parents she nearly died choking on a sub sandwich tuning blue until a 911 operator talked her Dad into how to do a Heimlich maneuver on someone in a wheelchair while waiting on the ambulance.
Difficulties with home care agencies
Home care agency after agency was refusing to come back because Patti became verbally abusive whenever anyone else tried to persuade her out of something.
One afternoon Patti went ballistic on our daughter and her friends over the choice of TV programs, even telling our daughter, “I wish you had never been born.”
From home care helpers to family this litany of incidents could go on and on but frustratingly I knew when on ‘my watch’ she could safely participate in living with MS as a family. Doing my job too well as a solo act in reality was masking the truth from family, friends, and neighbors.
10 years of constant remodeling
Finally after 10 years of constant remodeling we moved to build a completely accessible home. Within months of moving I found myself needing to put eye hook latches on most door. Our accessible home made it too easy for Patti to get outside and into trouble.
The final straw came one winter night when I felt an arctic draft blowing through the house. Following the cold I found our three cats staring out the front door at Patti dressed only in her pajamas. She explained the cats needed to be walked. It was a sub-zero wind chill night and the only thing that prevented Patti from rolling downhill to the street and beyond was that she had crashed into a wall of snow I had shoveled where our sidewalk made a turn.
I surrendered my quest
I surrendered my 15 year quest of to keep Patti at home. Visiting care facilities Patti surprised me one day by raising the ‘what if’ scenario. What if something happened to me, she never ever wanted our daughter to sacrifice her life to become her caregiver.
Focused now on the care facility era, I realized I was out of my league. We met with an elder care attorney. With Patti’s cognitive abilities fading and failing it was kind of critical to get all the necessary paperwork from wills to power of attorney done before my only recourse was to have Patti declared legally incompetent in a court.
Unless you are independently wealthy, Medicaid becomes the most viable option for long term care. Our attorney explained the drawback was we would need to spend down to below poverty to qualify.
Like most people, he had no idea how bankrupting the last 15 years of living with MS as a family had been. This piece of the puzzle was easier than most, assuming you can put your hand on 3 years of every page of every bank statement.
Eventually the pile of paperwork required grew to 9 inches in height, and I learned that abandoning home care is tough. It’s hard enough to ask for help; to beg is something I never thought I would ever resort to.
Yet today Patti is safe and cared for 24/7 with all the transition paperwork and filings done. Most important, Patti’s wish after a quarter century of living with severe MS as a family that our daughter would never ever ever have to become her caregiver in case something happened to me was granted. In life’s cruel irony, the ‘what if’ happened when I was diagnosed with lung cancer last year.