Kurt V. Leininger, P.E.                                                                                                               

From mid-2011 to early 2013, I traveled by plane from Philadelphia to Kansas City, about one weekend per month, to visit my parents and oversee their care. As the oldest, I felt responsible for visiting them that often, and keeping my brothers informed. My mother was born in 1914 and my father in 1916. They celebrated their 70th wedding anniversary on December 25, 2008. From 1949 to 1989, Dad was a small-town lawyer; Mom was a music teacher before becoming a devoted housewife and lawyer’s spouse. 

In 2011 Mom was hospitalized for dialysis from “hyperkalemia” (a kidney ailment caused by excess potassium). She came out of intensive care and was released from the hospital with continual home care, and weekly nurse visits to take blood samples (the first 60 days paid under Medicare). The rest of that summer, her home care personnel included several ladies from a health care company, plus two ladies we hired privately who had cared for one of Mom’s friends.

Dad continued to live at home, climbing stairs a couple times per day from his “man cave” where most of his time was spent in his bedroom/office. His memory had deteriorated in recent years, but he still functioned inside the house (with Mom’s help), although he didn’t understand why “all those women” were there to look after Mom. (One of them was male, and he was among the best.)

A few weeks later, Dad took a fall in his downstairs bathroom and fractured his back between the 9th and 10th vertebrae. He then wore a front brace to keep him from bending over. He needed assistance when sitting, lying down, and standing up, even after removing the brace. He couldn’t learn how to use a walker, even though the neurologist said his fracture had started to heal. (We concluded his progressive dementia made him unable to improve with physical therapy.) In early August, he was moved from the hospital to a nearby skilled care facility, while Mom continued living at home with her caregivers.

After a couple months in skilled care, Mom and I decided to put Dad under hospice care. (I learned from a caregiver that hospice care is not solely for the terminally ill; it’s for improving one’s well-being in his or her final months.) This was in addition to the 24/7 caregivers whose job it was to always be with Dad and call for assistance when he was trying to stand up or get out of bed, etc. A year later he had a “mild stroke” that prevented him from being able to swallow. We had put him under “do not resuscitate” status shortly after the hospice team took over, and he passed away in December 2012, about 16 months after he entered skilled care.

In February 2012, my brothers and I persuaded Mom to move into an independent apartment at the same facility where Dad was. That allowed them to visit each other, but we continued scheduling Mom’s caregivers for about 20 hours per day, since her physical weakness made it difficult for her to do normal daily functions, and she didn’t want to be left alone for more than an hour or two at a time.

After another ER visit in early January 2013, from a bloody nose that wouldn’t stop bleeding, her thoracic condition continued to weaken and Mom passed away in late January 2013, just six weeks after Dad had died.

Hiring caregivers can be a crap-shoot, even if they are all employed by a reputable company. Many of them are quite young and not used to “doing as they’re told” by a 97-year old lady who wishes she was able to take care of things herself. In general, Mom preferred her private caregivers whom she had gotten to know (one had been her housecleaner for several years). However, a private company works hard to provide backup staff when one of the regulars calls in sick, or needs to schedule personal time, which is difficult to arrange with three separate private caregivers.

Although the skilled nurses and caregivers were very good, I soon learned that a “skilled nursing” facility does not include continuous observation of each patient. Even when they kept Dad “parked” next to the nursing station in-between meals when he wasn’t in bed, he often would try to get out of his wheel chair when no one was looking. He fell once when trying to get up from his dining table chair when no nurse was nearby. After a few weeks in skilled care, we hired a second team of caregivers (from a private firm) to be with Dad 24 hours/day, in addition to Mom’s caregivers. Even though Dad wasn’t able to learn to walk or avoid falling, his general health remained quite good, and he always had a healthy appetite.

Dad lived in skilled nursing care for over 16 months. It’s worth noting that his caregivers were not allowed to give him medical care, or even help feed him after he could no longer feed himself. This may vary from state to state, but skilled nursing facilities generally have strict liability requirements and cannot let non-employees care for their patients, even if they are trained as nurses. I consider that a pitiful situation which does not make good use of a caregiver’s abilities. Having the hospice team looking after Dad was a great help, since the regular skilled nursing staff had their limitations, and Dad’s primary physician didn’t check in more often than monthly. Hospice staff included a couple of primary nurses who bathed him twice per week (in addition to the skilled nursing baths), a primary physician, a pastor, and a coordinator who visited every patient at least once per week (also their spouse if in the same facility). This particular facility cooperated with the hospice staff very well, but I heard of other facilities in town that were less willing to accept hospice care of their patients.

Shortly before Mom moved into the facility, we considered moving Dad into the same apartment with Mom so the same caregivers could attend to both of them. However, after one of Mom’s caregivers spent a couple hours witnessing how Dad was actually cared for (at my suggestion), I was persuaded that having Mom and Dad in a shared apartment would not have been practical. More than one person was typically needed to move or restrain him, and he often was pharmaceutically sedated so he could be easily transferred between wheelchair and bed. Living in the same apartment also would have subjected Mom to seeing how Dad had to be cared for. Scheduling caregivers for Mom alone was complex and required sensitivity to each of their personal needs and preferences.

To our good fortune, 2011-12 was a very mild winter which allowed my brothers and I to schedule frequent flights, arrange for moving furniture, clean out and donate their clothes (which have negligible estate sale value), arrange home repairs prior to listing the townhouse for sale, and schedule the estate liquidation sale. I spent much of late 2012 going through Dad’s legal and personal files (lawyers never discard a piece of paper), and keeping only those items needed for financial and historical purposes, and family memorabilia. The county historical societies of my parents’ home towns were delighted to receive such items as Mom’s wedding dress, her graduation photos, and Dad’s first computer (an Osborne) complete with owner manuals.

I won’t go into the financial burden required for parental care, but I’ll be glad to correspond with anyone who would like to have that discussion. Suffice it to say that, to the extent your parents have been frugal, to that extent will arranging for their good care become affordable.

These years were an odyssey for me and my effort was the least I could do to pay tribute to two long and well-lived lives. My parental visits were also an interesting break from the daily grind, while using some organizational skills absorbed from managing an engineering project. (I kept telling myself I was “living in interesting times.”) I had more “people management” than I bargained for, but even an engineer can dig deep to find those skills! I’m very grateful for those people devoted to elder care, but I’m glad I’m not among them.