A Challenging Parent in a Challenging System: What Would Person-Centered Care Look Like?

by: Penny Anderson: Secretary  CCAL.

At the risk of sounding selfish or self-pitying, when I hear stories of adults who have lost patient, loving, and caring parents, I often feel a twinge of jealousy.  My family, like many others, was challenging; and my parents’ behaviors, including alcoholism and a variety of mental health issues, continued throughout their lifetimes.  This made attempts to ensure appropriate care for them extremely difficult.  My mother died many years ago at a relatively young age (68), so  I am going to focus on my experience with my father who lived to be almost 84.  

My father was a demanding (including of himself), obsessive-compulsive man throughout his life, with the focus of his obsessions being primarily on things, processes and routines. After he retired and my mother passed away my father developed a rare and debilitating disease called Primary Lateral Sclerosis (PLS), which meant he would gradually lose limb and likely some speech function, however his cognitive abilities would remain intact.  For my father, the PLS first resulted in the gradual loss of the use of one leg and the eventual need for a wheelchair.   This was one of the worst possible diseases for an obsessive-compulsive person such as my father to endure.  His need for assistance coupled with his uncompromising rules and routines was unbearable both for him and for those who cared for/about him.   While quite a few of his routines and demands could easily be considered bizarre, they were extremely important to him; they were his ways and it was his life that was  eroding.

We were unable to locate an assisted living facility that met my father’s requirements (including a willingness to allow residents to drink at will) or that would accept him given his physical needs.  Another issue was that he refused to wheel himself in his wheelchair, insisting on being pushed at all times (strength was not an issue — at the time, he was still able to do an amazing 60 pushups).  The residences we visited were also reluctant to accept an individual who needed assistance with transfers from a wheelchair.  Some would have accepted him until he reached the point where two individuals would be needed to assist, but then he would have had to leave.  He ended up hiring an agency to provide him with a 24-hour in-home care provider.

My father refused to provide an actual bed or bedroom for his caregiver – a sleep sofa was used, which had to be folded up each morning and taken down each night.  The sofa was in a room that was actually my father’s office.  Each provider tried to comply with his many rules and demands, but it was extremely difficult for them and frustrating for him.   An example of one of his somewhat unusual requirements was that his caregiver had to put on my father’s shoes (with rubber soles) and socks prior to pulling on his trousers (the reverse was true as well – trousers off before shoes).  He would not budge on this routine, even though it made getting the pants on and off  very difficult.

Some caregivers were much better with my father than others, in terms of patience, tolerance, and even knowledge of how to provide the most basic physical care e.g., transfers.   However, most of the providers sent by the agency spoke little to no English, which for someone as precise as my father was extremely frustrating and upsetting, again for both him and the caregivers, and often resulted in my father becoming extremely angry, shouting and name-calling.  Particularly for someone with limited English, it can be difficult to understand the exacting routines my father demanded:there must be exactly 15 bitesize shredded wheats in the cereal bowl; the cereal box must be opened in a certain way; the juice glass must be exactly half full; the bathroom fan cannot be turned on for any reason; a certain pen must always be in a certain place, etc.  Needless to say, he went through many caregivers.  The home care agency never suggested that we meet to discuss his needs or issues.  My father would not suggest such a meeting, and he was adamant that I not contact them myself.

Towards the end, my father lost the use of his other leg.  He had also begun to lose the use of his hands and his clarity of speech was diminishing.  With neither leg functioning, he required two caregivers for transfers. He decided he needed to move immediately into  a nursing home.   His selection was one that I recommended he avoid after speaking with the county ombudsman.  But his chosen facility allowed him at least one drink before dinner, and he considered the place “classy” as well.  The experience was a nightmare.  His first day there, three staff members came to prepare him for bed and were in such a rush that they would not even take the time to listen to his routine, much less abide by it.  His items were randomly tossed out of his trouser pockets, rather than removed in the careful order in which they had always been removed and placed just so on the bureau.  Of course his shoes were taken off before his trousers.  He felt manhandled, disrespected, and abused.

My father lasted two nights in the nursing home, and then suffered a massive stroke.  When it became clear at the hospital that he needed to be removed from life support, he was returned to the nursing home.  We contacted hospice, who came regularly to ensure that he was receiving enough morphine (often he was not).  One early morning when I arrived in his room, the television was on.  Nighttime staff had taken advantage of his stroke to watch some TV.

I am a staunch believer in person-centered care/living.  But in some cases, such as my father’s, given the murky mix of issues affecting everyone involved, I struggle to conceptualize what it would actually look like. How could someone like my father mesh with person-centeredness and vice versa?   I would love to hear from others who have experienced, or are experiencing, similar convoluted and conflicting physical, mental, and emotional experiences/anguishes with an aging parent.


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One Response to A Challenging Parent in a Challenging System: What Would Person-Centered Care Look Like?

  1. Thank you Penny for sharing the story of your father with such poignancy here. I think all too often the experience of person-centeredness gets told through idealized rose colored glasses (imagine if….etc). It can make things seem remote and unattainable. Your relating of your father’s world reminds us of the complicated reality of it all (like Karen’s post before this one). I hope you all at CCAL keep on asking the tough questions.

    In my experience it takes some downright heroic people to provide person-centered care in an institutional environment like a traditional nursing home, all the more so if the person living there moves in with many challenges in their daily routine, like your father. Even if we could provide all caregivers (paid and unpaid) with more valuable education in the knowledge, skills and attitudes needed to truly individualize personal care, unfortunately we’re all still being asked to function in a broken system based on an institution-serving division of labor (which more often than not begins with a grossly inadequate number of staff “whose job it is” to provide personal care).

    It’s a fundamental deinstitutionalization of services that’s missing when the aides come in and do a hurry up job because they have 27 other people to assist with tasks. Would your father’s experience have been any different if literally everyone who worked in that particular community was prepared to provide direct hands-on care? Maybe, maybe not. But at least there would be that shared understanding from the start, as opposed to that great hollowing out of energy in the hallways (replaced by desparation) — that feeling we get when everything hinges on decisions made at the nursing station, when nobody is at the nursing station.

    To me, that gets at the moral imperative of the small household approach — it makes the scale more human, and creates more possibilities for supporting individuals as individuals, challenging routines and all.

    After having helped a family friend through three years of home care, assisted living and nursing home care (plus many ER trips and hospitalizations), it’s beyond frustrating that we haven’t created more alternatives to institutionally organized communities (and yes, sadly I think many purpose-built assisted living residences are just as institutional in the day-to-day lived experiences of residents).

    I say it’s well past time for a new CCC for young and old alike, a Compassionate Caregiver Corps designed around a green jobs program aimed at replacing about 5,000 institutional nursing homes (for starters) with small households in neighborhoods all around the country.

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