The challenges, issues, and ethical questions families face as parents age are often difficult to imagine, let alone talk about. Although my generation is always talking amongst ourselves about elderly parents, we often don’t discuss the details, which are overwhelming, and we don’t find the time to get personal help, join support groups, or seek solutions for our own health. We just don’t think we have the time.

About 15 years ago, my parents, my husband, and I bought a home that included an in-law apartment. The new home’s purpose was to allow for my parents to age comfortably in their golden years and to allow our growing young family to have a larger home.

The three-generation home seemed like it would work, and we hoped that it would work forever. It did work for many years, and it helped to create a very special bond between my parents and us but more importantly with their grandchildren.

As my parents aged, our home was slowly upgraded to include a handicapped entrance, grab bars, and it had an emergency intercom between levels. In the early 2000s, my parents, both in their mid-80s, were independent and active aging adults who maintained the in-law apartment, a home in Florida, and continued to travel. However, over the years, my father’s health began to deteriorate, and we found ourselves facing caregiving challenges that were well beyond our imagination. It is so difficult to watch loving parents slowly disappear before one’s eyes.

I am the youngest of four children and was the closest to my parents (so say my siblings). I want to make it clear that my siblings assisted with many of my parents’ needs; they, too, provided care and assistance. However, our parents lived in our home, making us the primary caregivers. I thank God every day for my siblings and all they did to help. Not all families have other members assisting with care.

The challenges began when it became apparent that my mother needed assistance taking care of my dad—his body was slowly breaking down. My father was a brilliant and loving man, the successful owner of a company, strong-willed, and not afraid to make decisions. However, he suffered from arthritis that slowly took away his physical body. Fortunately, or sometimes I think unfortunately, he never lost his cognitive abilities. He always knew that his body was failing and that he was dying a very slow death. My husband and I spent hours trying to help my mother care for Dad’s physical needs. Eventually, the decision was made (mainly by my dad) that he needed care beyond our home.

The challenge of giving up driving

The first issue that can develop is how to suggest to an aging parent that they should not be driving. How do you take away a parent’s driver’s license? This was a problem we had to deal with for both sets of parents (my husband’s parents and my own). Letting go of driving is essentially letting go of independence. This is very serious business for aging adults, and children find themselves having to force the issue and find ways to help parents transition from driving.

My dad recognized that he was no longer comfortable driving and he wanted to give it up, but my mom fought him and insisted he was still a good driver. They battled over this issue every day when they prepared to go out. It was difficult to watch them struggle but we knew Dad was correct—neither of them should be driving. We began to look for other transportation options for our parents.

Insisting that parents stop driving isn’t easy, but it’s the correct thing to do. However, it does develop new problems for caregivers. We found ourselves having to add new tasks for the parents to our busy schedules—driving them to the banks, the stores, church, dinner out, and doctor appointments. We were driving elderly parents and our teenage girls everywhere, while still working full-time.

Seeking higher levels of care

My dad was an engineer and architect and approached all problems with methodical thinking. He always sought the most logical answer. When the decision was made (almost entirely by Dad, but in consultation with the family) that the current in-law apartment, with the family as the primary care support, was not working, my dad asked us to help find assisted living facilities. We did a tremendous amount of research and visited multiple facilities. We wanted to find a place that had multiple levels of care so they wouldn’t have to move. In our area (the Capital Region of Upstate New York), we found only one place that had senior housing, assisted living, and a skilled nursing facility all on the same campus. Unfortunately, the assisted living rooms were just that—ROOMS—no apartment, no living room, and no kitchen area. It looked like a fancy nursing home. We couldn’t find a facility that combined the services my dad needed (assisted-level care) and the support my mom needed (social and recreational opportunities).

We finally found an assisted living facility that appeared to meet both of their needs, but it did not have an association with or relationship to a nursing home. They moved in anyway. Unfortunately, assisted living was not enough for Dad. He was failing physically and within four months of moving into the facility, a higher level of care was necessary.

We looked at two options: a nursing home or 24/7 in-home care. He chose to return back to the in-law apartment and we hired 24/7 care. My parents and siblings felt that Mom should remain in the assisted living center, as the thought of moving again was overwhelming to her and she had begun to make friends there. This was a very difficult decision. After 66 years of marriage, my parents were separated for the very first time. It was gut-wrenching.

In-home care is not the answer in all situations. It worked for us for about four months before issues began to develop. One main problem with in-home care is the incredibly high turnover rate for staff at home care agencies. Often, we would have someone in our home, trained and acclimated, and suddenly they would quit and leave the agency. When this happened, the agency could not immediately provide a replacement so we found ourselves needing to call in at our own jobs to help care for Dad. Workforce shortages are a serious problem for the home care industry and the growing number of families that rely on it.

Also, 24/7 home care necessitates that home care aides have a place to sleep. We had to change the in-law apartment to accommodate the new living situation. Despite this, we often heard from aides that 24/7 care did not allow them to get a proper amount of sleep. My dad struggled to sleep due to pain and discomfort and required considerable evening and night-time care. He fell and was injured one night while one aide was attempting to catch a few hours of sleep. We knew the time had come to look at a nursing home.

Read more in Caregiving: My Personal Journey – Part II. Coming soon.

Portions of this article were first printed in the Capital Commons Quarterly, Albany Guardian Society – Issue #1, Vol. 2, April 2008. It has been edited, reformatted, and updated for this blog.

Laurie Bacheldor is a Senior Consultant and Aging Care Specialist at Pathfinders Consulting Group

Featured photo by Artem Labunsky

More to come.

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