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Caregiving - When You Don’t Know What You Don’t Know

By Brenda Avadian, The Caregiver's Voice

Oftentimes, we caregivers jump in before we realize what we are doing.

How hard can caregiving be?

The truth is we don’t know what we don’t know. (Read that again.)

Mom fell and broke her hip.

Dad wandered into the neighborhood diner in his underwear.

We jump in during a crisis.

How do we grow aware of what we don’t know?

That’s a challenge. It’s like trying to see the fourth dimension of time in space when our perceptions are limited to the three dimensions of width (or length), depth and height. When professionals offer helpful information, we likely won’t perceive all of it until we’ve had enough experience as caregivers.

While there is much to learn when caregiving, here are four areas of which we may initially be unaware.

Four Blind Spots When Caregiving

1. It’s not as easy as it appears.

We’re intelligent beings.

How hard can it be to care for a family member, a friend, a neighbor?

We enter the caregiving realm with innocence and soon discover we’re in over our heads. Instead of, I got this, we’re lamenting, I didn’t expect this!

It’s important to connect with other caregivers to discover what we don’t know. Community educational offerings can have a healthy dose of good information and access to local resources. Support groups
offer valuable insights from those also on the front lines of care.

2. When a Loved One “Forgets,” It Does Not Always Mean Dementia.

While greater awareness of dementia helps to reduce the stigma, awareness has a downside. Family members, friends and even medical professionals may use dementia as a catch-all explanation of an elder’s forgetfulness and disorientation.

There may be other causes for disorientation and memory loss. An assessment team comprised of a neurologist, psychiatrist, social worker, speech therapist, and more may find one of the following causes:

Hearing Impairment

As a person who can only hear from one ear, I read lips and have spent a lifetime asking people to repeat what they said. I grow tired of asking, “What did you say?” to people who mumble or worse, cover their mouths. Eventually, I stop asking, “What?” and simply smile. Later, when people refer to the earlier (muddled) conversation, they tease me. “You were right there! How could you not remember?” The truth is, there was nothing to forget. I didn’t hear what was said.

Changes in Body Chemistry with Age

Our bodies change over the years. As a result, what and how much we eat and drink (particularly, alcohol) will affect us differently.

The medications we’ve been on for years may begin to affect us differently, even mimicking dementia-like symptoms, including forgetfulness, loss of balance and disorientation.

It’s a good time to review with our doctors the supplements and medications we’ve been taking for years. For instance, with regular exercise and healthier eating, I’ve had to reduce the frequency of most of my supplements that my body was not using.


Other causes of dementia-like symptoms of forgetfulness and disorientation include UTIs (urinary tract infections),TIAs (transient ischemic attacks or mini strokes), andchemotherapy.

It is important to visit your doctor to learn what is causing any dementia-like symptoms. However, before accepting a hasty diagnosis, be sure that a specialist in dementia, such as a neurologist or, better yet, an assessment team including a psychiatrist and speech therapist evaluates your loved one’s symptoms.

3. Discharge after Hospitalization

Over the past two decades, I’ve heard from too many families that mom, dad, or spouse was discharged without sufficient care options in place.

While we forget that health care, whether for-profit or non-profit, is a business – one that needs to make money to operate, we need to also advocate for the best care our loved one. While hospital discharge teams may pressure you to find options for your loved one’s care following hospitalization, you must be certain to have a solid care plan in place. Too many readmissions occur because a loved one was discharged with inadequate support in place.

4. Those with Experience Provide Valuable Help

While we’ve become a DIY society, investing in someone else’s expertise is a wise decision.

You do not need to blaze a new trail when so many others have hard-earned experience in caregiving. For example, a professional in-home caregiver who has experience caring for diverse people can offer you valuable insights. Drawing on this knowledge and experience will shave off months of missteps and frustration as you care for your loved one.

An experienced caregiver can help you learn how to more easily toilet, bathe, feed, dress your family member depending on your loved one’s needs. Besides, having another caregiver will give you piece of mind as you take a caregiver respite. You won’t know until you try it. Regardless of what your loved one says; another caregiver may provide a welcome change of pace.

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