If you’ve read my bio, you’ll know Alzheimer’s disease is a big reason why I’m in this field.

When a parent develops Alzheimer’s, this profound thing happens. You suddenly become terrified you’ll have the same fate. You become determined to do all the things your parent never experienced, especially when that parent has early-onset Alzheimer’s.

By age 59, my mother’s Alzheimer’s was full-blown. I’d been in denial until the day she called me to say she’d driven into a tollbooth. When I asked her why, she said, “The voices on the radio told me to.” That very moment defined a stark new reality I couldn’t deny. The mother I once knew could never be retrieved.

My mother, younger than my age now, never had a voice! She never got to blow her horn. I was determined to not to end up that way. I wasn’t going to be invisible, useless or go quietly into the dark of night.

In that moment on the phone, I made up my mind. If I had only limited time, I wanted to know how to be an older woman with a voice, how to live my life with meaning and be an older woman of passion, purpose, and possibility.

Nothing was going to prevent me from using my voice and blowing my horn for the rest of my years.

Today is World Alzheimer’s Day. We must stand up and have a voice for those who do not. We must support the caregivers who spend their nights worrying and unable to help their loved ones.

I talk a lot about finding your voice and awakening the visionary within, to make a difference, to stand up. My experience was one of my own defining moments, when my own visionary really started to open her eyes. But part of finding your own voice means also helping others to find theirs.

Every year, on Sept. 21, Alzheimer’s associations across the globe unite to recognize World Alzheimer’s Day. Today is an opportunity to raise awareness about Alzheimer’s disease and the need for more education, support, and research. This disease affects millions of families across the United States and the world. Now is the time to act so that others will not suffer the same fate as my mother.

Image credit: Threadless

No one wants to move to a nursing home or put an aging parent in one. Yet, families may not have a choice when Dad loses a lot of weight because he lives alone and doesn’t eat well, or when he becomes depressed and forgetful. The nursing home may be the only place to care for him.

It happened to my family. We knew Dad didn’t want to go, but his dementia severely affected his ability to care for himself. It first started with problems dressing himself, followed by incontinence and, lastly, problems with his mobility, making transferring him even from his bed to a chair nearly impossible. Watching a parent slip slowly down the rabbit hole is frightening, and there’s nothing anyone can do about it.

The doctors told us that Alzheimer’s disease can cause deterioration in his capacity to do day-to-day living activities (ADLs), as well as the loss of cognitive function and behavioral changes. My Dad’s decline in everyday functioning increasingly became a burden on the family which led to a nursing home placement.

ADLs, activities involving health and hygiene, are the things we do on a regular basis to safeguard our health and well-being, and many of us take them for granted until we can no longer accomplish them. These instrumental activities are the ones that allow a person to perform complex skills to live independently. Here are some examples:

Primary activities of living

• Eating
• Bathing
• Dressing
• Toileting
• Continence
• Transferring – the ability to get out of bed or a chair
• Walking (even with the aid of a cane or walker)

Instrumental activities of living

• Food preparation
• Housekeeping and laundry
• Managing finances
• Shopping
• Use of the telephone
• Taking medication
• Using public transit or driving a car

The medical team measured Dad’s ability to perform these activities to assess his functional ability. They used tools called the Katz ADL Scale and the Lawton IADL Scale to determine the level of care he needed.

As his dementia progressed, there was a continual decline of abilities until the performance deteriorated to the point of ill-health. His body, not just the mind, was affected by the disease. He lost motor control. It was hard to watch him lose the independence he treasured, and it was very frustrating and depressing for him to realize that this was happening.

That’s when irritability, anger, aggression, and withdrawal set in. The family believed these behaviors were the result of his recognition that he couldn’t take care of himself. We tried everything to help him regain some skills but, unfortunately, the deterioration did not reverse. The doctor assured us that it was the nature of dementia, but we continued to encourage him to attend the therapies (brain cognition and memory training, for example) in hopes of delaying the effects. They did help make daily activities a bit easier, or at least do-able, for a short time. Our goal for Dad was to improve his functioning and independence that made him feel more productive in the end.

For families, safety should be the first concern when caring for a relative with a disability. Don’t take for granted that a loved one can perform everyday tasks like you. Remember that a knife can cut fingers as well as vegetables, and Alzheimer’s-proofing is similar to child-proofing a home.

Keep a watchful eye for a sign that points to their need for more care. Look out for unkempt hair and grooming, loss of weight, incontinence issues, and issues with paying bills. It’s hard to admit that a parent can decline so rapidly, but your awareness will keep a parent safe and healthy. Don’t jump to conclusions, and always consult with the parent’s physician for appropriate steps to take on their behalf.

Carol Marak contributes researched articles for the senior living and healthcare market. She advocates for older adults and family caregivers by writing on tough topics like chronic health issues, senior care, and housing. Find Carol’s work at AssistedLivingFacilities.org and SeniorCare.com. Find her on LinkedIn and at Carol@SeniorCare.com.

“Human beings have a very limited ability to accurately predict or even imagine the needs of their future self. It is especially true when that future contains scary possibilities.”  ~ Dr. Bill Thomas

I lost my mom before she died. I could no longer deny that her Alzheimer’s was full-blown. She had early onset of the disease when I was a teen. Now suddenly, at 28 and a young mom myself, I had to face that she was really gone. There was no retrieving her. She was only 59!

Mom went from living alone independently to needing constant supervision and professional care in a nursing home that specialized in Alzheimer patient care.

As a family, we’d never talked about how we would care for our parents or what provisions were to be made for their eventual passing. My older siblings, far more astute on these matters than I (having faced Long Term Care — “LTC” — needs of other family members), sprang into action and garnered the help from an array of trusted advisors we needed to sort out the best care for Mom.

Let’s face it, it’s never easy to work out complex logistics and quality of care concerns. But I guarantee you it is far more overwhelming and devastating when done in crisis mode intervention, which only exacerbates stress and intolerable grief. However difficult, it’s wise to plan for LTC sooner rather than later.

I assumed this waiting till it’s too late modus operandi was attributable to my family’s dynamics. Over time, however, I learned that this is more prototypical than not. In fact, when I asked Activist-Philanthropist Elly Guggenheimer, then age 86, during our interview for my book, Visionaries Have Wrinkles, “Do you talk to your children or do they ask you about your plans for your end of life?” she responded, “No, absolutely not. I never sit down and say to my children, ‘Let’s talk about my end-of-life planning.’ ”

What a pity that so many of us don’t have these conversations with our kids (much less our spouses or partners) long before we reach a crisis point. Instead, we wait until it’s too late.

This has all hit home for me this spring as I am recuperating from an old injury thrown out of whack by an unrelated surgery at the beginning of 2015. Albeit temporarily, this has put me out of commission physically for several months. I’m an independent woman and my freedom is paramount to me. Yet, during my recovery I have had to rely on others to drive me anywhere and everywhere, prepare my meals, and much more. I even had to move my “office” from a room requiring staircase access to my main floor living room. All of these “inconveniences” have caused me to wonder how this would be if it happened when I was a lot older. Or, what if my adoring husband of almost 40 years wasn’t able to care for me or wasn’t with me any longer … how would I manage?

While machinating on LTC, I received a report from Senior Care entitled, “America Has a Major Misconception on Aging.” I highly recommend you take a moment and download it for yourself, your health care providers and your family. I’m pretty savvy on aging and the adult life course, but the stats reported are a wake-up call I can’t ignore, nor should you. For instance (this was a shocker for me!) — what would you guess is the percentage of Americans who will need LTC (e.g.: nursing homes, assisted living, home health care, informal caregiving)? Apparently only 37 percent of us think we will need LTC. In actuality, that number is closer to 69 percent (approximately 2/3 of us).

But the royal Holy Cow for me was discovering that 75 percent of Americans have not had LTC discussions with family members! This lack of pre-planning can result in greater emotional and financial strain, as well as less control over and/or fewer choices regarding preferred care.

So I ask you, have you had a serious conversation with your loved ones? It will never be a “good time,” but I assure you now is a better time than later.

(Note: June is Alzheimer’s & Brain Awareness Month. Find out more at: Brain Awareness Month)

(Image Credit: Langholz by Wolfgang Staudt, flickr.com)