When you've spent your entire life under the guidance of your parents, caring for them in their old age can be complicated. The reversal of roles often brings on feelings of confusion, frustration, sadness, and surprise. Caring.com expert Brenda Avadian knows all these emotions well, and she describes them in her new book, Where's My Shoes? My Father's Walk Through Alzheimer's, an account of her time as a caregiver for her father.
Is there anything about caring for your father with Alzheimer's that you were completely unprepared for? What do you wish you had known beforehand?
The scope of caregiving.
I mean, who can imagine everything required to care for a loved one? My husband and I didn't have children. Next thing you know, I'm caring for an 86-year-old who needs help because dementia has rendered his brain into that of a child's. But wait! He's my father! I can't treat him like a child. Confused? I was!
In Where's My Shoes? you describe your father undergoing episodes during which he would act in ways that were completely uncharacteristic of his normal behavior. What warning signs of Alzheimer's were most obvious in the case of your father? Least obvious?
Forgetfulness and disorientation.
I remained blind because I wanted to preserve his independence and dignity. It was unnerving to hear him ask, "Were you in the neighborhood?" (I live in California and he lived in Wisconsin.) "Where's Ma?" (Both my mother and grandmother died years earlier.)
Now that I reflect on it, he may have thought I was my sister, who lived five blocks away.
The surprise came with his unchecked sexuality. Yikes! My father was proper about such things during our upbringing. Heck, I couldn't even get him to share a swear word in Armenian! While caring for him, I tried to reconcile in my mind and heart that dementia was causing his confusion, versus feeling violated by his sexual advances.
What helped you come to terms with the fact that you needed help caring for your father?
I was out of my league. Truly.
Even caregivers who have had experience raising children are unnerved by the role-reversal, and at least they can draw on their experience caring for fellow humans. All I had were cats: Clean the litter box, feed twice a day, and pet regularly. Easy enough.
Where does one draw experience to care for one's 86-year-old father with dementia? I needed help to acquire some measure of competency implementing the very different skill set required for caregiving.
What was your biggest challenge as your father's power of attorney?
Dealing with the obstacles created by my brother and sister.
Additionally, the POA document, drafted in Wisconsin, didn't completely address California's laws, so I sought a voluntary conservatorship.
If caring for my father was not challenging enough, taking care of all the noncare items took me to the edge many times. I had to inventory everything he owned. I had to maintain a detailed record of expenses and income. Even with a CPA's help, I remained accountable for the final reporting. I spent many hours each quarter proofing their reports and correcting errors. I had to clear out 45 years of accumulated possessions of two borderline hoarders. Then I had to sell my father's home. Did I mention my father's home was in Wisconsin and I lived in California?
Throughout the whole process, what did you find to be the most rewarding thing about caring for your father?
There were moments that seemed most rewarding along the way:
His humor. For example, after we convinced him our house was his (so he wouldn't feel he was a burden), when we didn't see eye to eye on an issue, he told us, "Get out!"
Learning to treasure the smallest joys, such as when he called me by name.
Learning to be patient and growing my capacity for empathy. (When I have this disease, how will I want to be cared for? I asked this question many times to guide my actions as a caregiver.)
His childlike innocence. His joyous "discoveries" of even the mundane details, like a street sign.
Being invited to speak to national audiences on "Surviving Caregiving With Humor," as I was living the experience and afterward.
Learning what matters in life. It's hard to keep focused on the answer -- people -- when temptations and materialism are all around us. But the truth is, we are born and then we die. In between, we live. People, not things, help us celebrate life's joys and comfort us during life's sorrows.
Which part was the most difficult?
Two parts were difficult:
The noncare-related items I mentioned earlier.
Each milestone of my father's decline: continually falling, needing a wheelchair, requiring "mechanically soft" food, and forgetting who I was -- his fellow Leo born on his birthday in August.
Your book is dedicated to your father, who, you mention, taught you the value of perseverance. What helped you persevere when caring for your father was hard?
Both my parents modeled perseverance. They survived the Armenian genocide and immigrated to America. They worked hard for long hours each day to earn their piece of the American dream. They did remarkably well even though my mother stayed at home to raise three children and my father worked as a machinist, earning $5.00 to $7.50 an hour.
They instilled in each of us the value of hard work and an education. I earned enough to pay for college, then taught at three Wisconsin-based universities plus one college while enjoying a thriving leadership and communications consultancy.
When I posed this question, what helped us persevere, to my husband, he answered, "Because we made the commitment to care for your father. There was no other choice."
At age 37, as I devoted less time to my consulting practice and more to caregiving, a surprising thing happened. My career morphed into family caregiver spokesperson while caring for my father. I wrote the book, with the grammatically incorrect title that was a question my father asked repeatedly: Where's My Shoes? My Father's Walk Through Alzheimer's. It filled an unmet need, and I began speaking at conferences, retreats, fund-raisers, and even delivered training for care staff and doctors. All this speaking and writing activity helped me to better care for my father. (I had to walk my talk.) After the first edition went international and was translated into different languages, my father died, so I wrote an updated second edition of Where's My Shoes? that's available today.
What is one piece of advice that you would give to somebody with a loved one who is suffering from late-stage Alzheimer's?
I need to share two, as you'll be more successful if you do both.
First, learn as much as you can about the disease, so you'll know what to expect.
Second, care for your loved one as you would want to be cared for if you were living with the disease. This last part is critical. The Golden Rule is not enough. Living with the disease brings to light fears and uncertainties as one grasps for reality against a veil of ongoing loss. That's a very scary place to be -- to know that a diagnosis of dementia means one's dreams and aspirations have been cut short.
What resources does your website TheCaregiversVoice.com offer to caregivers?
The mission of the Caregiver's Voice is to bring caregivers hope and strength with knowledge, support, and humor. Our focus is on the caregiver who cares for people with cognitive-impairing diseases such as dementia and Alzheimer's.
Every week, we post two or three original articles offering caregiving tips, caregiver inspiration, and caregiver humor. Additionally, we offer the Caregiver's Voice Review. Finally, caregivers can choose from the Caregiver's Voice products and services, including one-on-one coaching, expert speakers, and books.