Caregivers of Older Adults

My dear friend, Vivian, has been caring for her father for nearly fifteen years now. Recently her father had a tragic fall that left him with severe injuries. Vivian continues alongside her father in what may well be the remaining days of his life. As a good friend and fellow caregiver of my own mother, I want to support her but also feel the grip of fear that I may be in her shoes someday soon.

We often hear that one way to keep our brains sharp is to learn new skills.  Learning new words and their meaning certainly falls in that category.  The word “Grok” was actually coined by Robert A. Heiniein for his 1961 science-fiction novel, Stranger in a Strange Land.  The Oxford English Dictionary defines to grok as “to understand intuitively or by empathy; to establish rapport with” and “to empathize or communicate sympathetically (with); also, to experience enjoyment”.  Now that undoubtedly sounds like family caregiving!

A diagnosis of dementia is difficult enough for families to accept especially when it affects a beloved parent or grandparent. Adding behavioral issues to the mix and a tense situation can become explosive. It’s almost incomprehensible to believe that someone you may have known your entire life to be a kind, mild mannered, gentle person can suddenly become aggressive and combative towards their own family or others trying to help them. Behavioral disturbances in dementia are such that can place the person with the disease or others at risk and additionally can make it extremely difficult for the caregiver.

As a teenager in high school I remember the coach, a relatively young man at the time, pulling out his dentures as a way of getting our attention.  We all giggled at his toothless grin, as he cautioned us about caring for our teeth since he had lost his due to a football injury. Yet it wasn’t until my mom, who was in her 50’s, had to have dentures to replace her much decayed and diseased teeth that the importance of good dental hygiene became abundantly clear. Up until that point we only made dental visits if we were in severe pain due to a toothache.  With many other high priority issues of feeding and caring for a large family, preventative dental care was not on the top of our to-do lists.

There is certainly a new awareness in our communities about caregivers. Recently there was an advertisement on the internet promoting greeting cards to send to caregivers and the front of one card read: “Caregivers are often the casualties, the hidden victims. No one sees the sacrifices they make.” Much like other social issues that have come to light over the last few decades, caregiving of older adults is reaching a higher level of prominence, especially with the growing statistics of boomers needing care. The two words that stood out in the message on the card were “casualties” and “victims” – perhaps because they make caregiving sound like a war zone. Is that what caring for our elderly parents or spouses has become? 

The kids walked by her apartment twice a day. She sat by the window every morning watching; remembering and sometimes wishing they might stop by some day. Every afternoon they would parade down the sidewalk again and every once in a while one of them would glance over to the window where she sat and perhaps offer a slight smile or wave. The kids never really thought much about the old woman in apartment 21; they just strolled by. 

“Dottie, mom needs tissues” – that’s all her brother Jim said, but it was enough to take her over the breaking point!  After calming down, Dottie wondered why this simple phone call from her brother almost brought her to tears. It wasn’t the request from her brother; it wasn’t even the idea that Jim could have very easily requested the box of tissues from the clerk at the nursing home where her mother had been living now for several years. It was the realization that she had now now become "the caregiver" - the one that everyone else relied on to make sure her 95 year old mother was properly cared for. With several other siblings in the picture, nevertheless it was Dottie who took on the responsibilities of checking on her mom almost daily making sure she was eating, scheduling meetings with the doctors, nurses and social workers.  It was a role that weighed heavily on her.

After putting in her eight plus hours at work every weekday, when Sandy heads home at 5:00 her work day is not over, it only begins again when she walks in the door at home. Sandy, like many others, has a second job. Sandy is a caregiver for her aging mom. One thing that Sandy has not done is tell her employer or even many of her co-workers that her second job, caregiving, is often overwhelming! Caregivers are often reluctant to confide in their employers about their added responsibilities because they may be concerned with job security. Perhaps one of the most common reasons caregivers don’t share this information is because they don’t see it as doing something out of the ordinary. They are doing what is expected of them or just giving back to their parents. According to a webinar series provided by the National Alliance for Caregiving (NAC) entitled, Better Work, Better Care: How Employers Can Support Family Caregiving, Sandy is among the 75% of caregivers of the 44 million unpaid caregivers who are also employed. The employee caregivers also may have to make work accommodations due to caregiving duties which could include turning down a promotion, arriving late or leaving early for work or even quitting a job or taking early retirement; all of which have a huge impact on a caregivers’ economic status.

“Despite great strides in our understanding of mental illness and vast improvements in the dialogue surrounding it, too many still suffer in silence.” This is the very first sentence in this year’s Presidential Proclamation for National Mental Health Awareness Month.  As America’s population ages, the need for mental and behavioral health services continues to grow.  Unfortunately there are many myths about aging and mental disorders, such as anxiety and depression being normal signs of aging.  Too often such generalized statements are the cause of older adults being under diagnosed or overlooked for problems that are very treatable.  However, even the normal physical and emotional stresses that go along with aging can be risk factors for mental illnesses like anxiety and depression. 

May is the month designated to celebrate Older Americans and we’re reminded of getting older when we see the celebrities on the cover of the AARP magazine getting younger and younger with each issue. At what point do we become “older” and perhaps feel we’ve just gone over the proverbial hill? AARP has become the standard bearer for determining the age to become old officially at 50 by sending an invitation to join the ranks of everyone 50 and older! Not so fast, AARP also reported on a Canadian study showing that “our cognitive motor skills – meaning the speed at which we process something and then react to it – peak by age 24, then begin to diminish slowly.”  Now speed certainly isn’t everything – anyone over 50 can tell you that! What some older folks may lack in speed, they can certainly make up for in strategy, efficiency and pulling from years of experience and knowledge skills.