Changing roles: parenting the parent

Bonnie Sandler

May, 2009

I remember when I was in my early 40s reading an article about turning 50. This was described as a time of freedom: Children are established and have moved out of the home, responsibilities are fewer and financial security has been reached. I have since hit the big five-oh, and none of the above apply to me.

Now baby boomers are not only working longer, they may still have children living at home and are often caring for aging parents.

If the parent has a diagnosis of cognitive impairment, adult children find themselves assuming a parental role toward that parent. The shift from adult child to parent is a difficult transition. Even as adults, children often turn to their parents for advice, support and guidance. Children, no matter what age, continue to view parents in the role they have always assumed.

When parents lose their abilities to Alzheimer’s disease, they are no longer able to provide their children with what we view as parental care.

Pre-diagnosis is a difficult time. There are good days and bad days. Children may feel one day that there is something wrong with their parent, but then a good day comes along and they chalk the difficulties up to fatigue or simply an “off day.”

Gradually there are more signs all is not well: The parent has more difficulty covering up early memory losses and confusion. The feeling of being on a roller coaster ride begins, one day filled with worry, followed by a day of relaxation when the parent is fully functional.

As difficult as it is to hear a diagnosis of Alzheimer’s disease, knowing there is a reason for those years of changing and odd behaviour can provide relief.

As a general rule, it takes about four years to establish a diagnosis of AD.

Some adult children get stuck in denial mode, unable to accept their parent’s mental decline. It is one thing to witness an aging parent’s physical challenges, but watching a parent’s confusion over how to use a fork is hard to digest. The child may be unable to believe that their strong, intelligent parent, once seen as a pillar of strength, can no longer eat without direction or assistance.

Feelings of resentment and guilt are added to the many other mixed emotions. Caregiving or care managing takes an enormous amount of time and energy, leaving less time for family, work and pleasure. Already busy lives become impossibly busier. Guilt over not being able to manage all these responsibilities can lead to overburdened, stressed-out adult children who may become anxious or depressed.

If a strained relationship existed before diagnosis, children can feel that their parent is exhibiting difficult behaviours to punish them. In such situations, I often suggest counselling for the adult child, preferably after they have educated themselves about the disease. Relationship issues that have not been resolved prediagnosis will never be able to be addressed directly with the parent, and it can be very helpful to work through these issues with a professional counsellor.

As parents need more assistance with their personal care, it may be best to hire a professional caregiver. Even when the parent has difficulty expressing himself in a coherent manner, there may be signs of discomfort when a daughter assists in such personal activities such as bathing. A paid and experienced caregiver is often more successful in assisting with personal hygiene. Many adult children admit to not feeling comfortable caring for their parent’s personal needs. If this is the case, the parent will surely sense the discomfort and may react unfavourably.

As the disease progresses, children will find that they will need to make more and more decisions on behalf of their parents.

Without proper education about Alzheimer’s disease, children may continue to fight the disease with anger, withdrawal and other responses that agitate their loved one.

It is necessary to understand that Alzheimer’s is a neurological disease that slowly robs people of their mental and physical abilities – through no fault of their own.

Comments and questions can be sent to bonnie@servingmontrealseniors.com