If I Only Knew Then What I Know Now - Caregiving 101

By Jacqueline Marcell, Author of Elder Rage, or Take My Father...Please! How to Survive Caring for Aging Parents

Posted 23 April 2003

I had always been the light of my parents’ lives, and I know that all my successes in life are directly attributable to them always being there, rooting for me through every hangnail and paper cut, and every trial and tribulation, of my entire life.

When I was laid off from my 15-year career as a television executive, my then 83-year-old father, Jake, immediately packed up my 78-year-old mother, Mariel, still frail from a heart attack a decade earlier, and drove from San Francisco to Los Angeles just to give me moral support. “Don’t worry, we’re here for you, sweetheart. And don’t let those people get you down--you’re the best, the smartest, the prettiest, and you can do anything you set your mind on.”

A few months later, days before I was scheduled to endure risky spinal surgery, my doorbell rang unexpectedly. There they were: my very old, barely able to stand themselves elderly parents—proudly standing behind a wheelchair they had hauled 400 miles for me to use after my surgery. “Don’t you worry, honey. Mother and I are always here for you. We love you so much,” Dad said.

But soon after my life changed forever when I received the call that my mother was dying. I hobbled from my recovery bed and flew home to discover that she was not dying from the damaged heart valve, the result of her heart attack a decade earlier, but rather from an infection caused by her own waste. Sadly, my father had not been able to keep her clean, nor had he thought that he should take her to the doctor. She weighed 82 pounds when I arrived, and my heart ached with sorrow that I had not been able to be there sooner.

For 11 years I had begged my father to allow a caregiver to help him with Mom, but he adamantly insisted on taking care of her himself. Every caregiver I hired to help him lasted about three days, and then I’d get the familiar call. “Jacqueline, I just can’t work with your father. His temper is just impossible to handle. He yells and stands over me and he won’t let me do anything. I don’t think you’ll be able to get him to accept help until he’s on his knees himself.”

Growing up, my father had always been 90 percent wonderful, but that 10 percent of a raging temper was a doozy. He had never turned his temper on me before, but then, I’d never gone against his wishes. Now, I knew I had to persevere to save my mother’s life, as well as his, having no idea that in the process it would almost cost me my own.

Jekyll & Hyde

I spent three months feeding my mother every bite of her meals and nursing her back to relative “health” in a convalescent home, while my father screamed, yelled and repeatedly threw me out of the house for trying to make changes he didn’t want. I was stunned to see him get so upset over the simplest things, even just running the dishwasher, and there was no way to reason with him. It was so heart-wrenching to have my once-adoring father turn verbally and even physically abusive toward me--I have never been so devastated.

Weeks turned into months, and then nearly a year passed as I became trapped in my parents’ home trying to solve the endless crises. Once I finally got some medication to calm him down, he flushed the pills down the toilet before I could stop him. Forty caregivers came and went (some were there for an hour) as he called them nasty names, spitting and spewing and throwing them out of the house.

When my father attacked me from behind and choked me for adding HBO to his TV cable package (when he had eagerly consented to it just a few days before), I frantically dialed 911 for the first time in my life. The police came and took him to a psychiatric hospital for observation, but he was so “completely normal” as far as they could see, that they released him. Unbelievably, similar incidents happened not once but four times. I was stunned that numerous doctors, including the head of a psychiatric hospital, told me that he was “normal” for a man his age.

Solutions

You don’t need a Ph.D. to know something is wrong, but you do need an M.D. who can diagnose it and treat it properly. One day, a friend mentioned that the Alzheimer’s Association provided referrals to community resources such as geriatric dementia specialists. By then, I was at my wit’s end, ready to try anything. I was sure my father didn’t have Alzheimer’s, he was still so crafty and manipulative. He’d always had a raging temper, nothing new, so I thought he was just furious at me for interfering. Maybe my mother had Alzheimer’s, as she’d ask the same questions over and over and often said things that were untrue and seemed disoriented. But Dad was so irrational and illogical at times, with huge mood swings, but then he’d be normal. Could these possibly be symptoms too?

Once I found a geriatric dementia specialist, he was able to convince my father to allow extensive workups on himself and my mother. After performing a battery of blood, neurological and memory tests, along with PET scans, the doctor uncovered Stage One Alzheimer’s in both my parents. (Their regular doctor missed it completely.)

Since I had no experience with eldercare, I just didn’t get it. I didn’t realize that what I’d been coping with was the subtle beginning stage of dementia, which is intermittent and appears to come and go. I didn’t understand that my father was addicted and trapped in his own bad behavior of a lifetime, and that his habit of screaming and yelling to get his way was coming out over things that were now distorted and illogical and irrational—at times. His life-long need to be in total control was manifesting itself in an explosive way because of the onset of Alzheimer’s.

There are many types of dementia, Alzheimer’s is just one type, and there’s no stopping the progression, nor is there yet a cure. However, if dementia is identified in the early stage, there are three FDA approved medications (Aricept, Exelon and Reminyl) that may slow its progression by 2-5 years and improve cognitive functioning. Keeping a person in Stage One longer, which is intermittent and mild, delays full time care.The Alzheimer’s Association reports that by delaying the onset of AD for five years, we could save $50 billion in annual health care costs. Even a one-month delay in nursing home placement could save $1 billion a year!

Next, the doctor treated my parents’ depression (often present in dementia patients), which made a huge difference in their moods. And then with anti-aggression medication, my father’s impulse control started to get smoothed out. It wasn’t easy and we had to adjust dosages frequently, but with the right doctor and the right combination of medications, we finally started to make some progress.

The next piece of the puzzle was getting my parents out of bed, “waiting to die,” and into adult day health care. Yes, convincing my father to go was an absolute nightmare at first. “Awh, I’m not going there. Everyone is too old!” It took a few weeks to get him into the routine, and then he really started to look forward to all the activities.

I can’t say enough about the value of adult day care because it completely changed my parents’ lives as well as my own. They finally had some place to go, friends to see and fun things to do: crafts, games, singing, exercise, cooking, current events, movies, field trips, interaction with children and pets, on and on. The pressure on me to entertain them was drastically reduced (as was my stress level), and then I was able to spend quality time with them in the evenings and on weekends.

The last piece of the puzzle came when I found a caregivers’ support group. Solutions started to present themselves when I was around others who were coping with caregiving too. I learned how to shift my perspective from the heartbreak of watching my parents’ decline, to focusing on the life they had left. I cherished the good days, and just let go of the bad. Then, finally, I began picking up the pieces of my own shattered life.

All Worth It

A year and half later… I knew it was all worth it to hear my father say, “We love you so much, honey.” I am certain that all my efforts to make the last years of my parents’ lives the best they could be, kept them at home, together, five years longer. It was the hardest, yet most rewarding, thing I have ever done--and consider it to date the biggest accomplishment of my life.

Looking back, I am shocked that none of the many professionals who treated my parents ever discussed the possibility of dementia with me. Had I been shown the “10 Warning Signs of Alzheimer’s Disease”, flashing lights would have gone off in my head, as I would have realized a year sooner what was happening. And why didn’t someone tell me to get durable powers of attorney in place before the diagnosis, so I could make health and financial decisions for my parents? Why didn’t I know about long-term care insurance years earlier, which would have covered the cost of having caregivers in the home?

Like so many people, I was in denial that my invincible parents would ever need me to take care of them, and unfortunately, that cost us our family’s entire life savings, as well as a fortune in Kleenex. If I knew then what I know now, it wouldn’t have taken me a year to solve the crisis. In fact, it wouldn’t even take me a month to get everything moving in the right direction.

If any of this rings true for you and someone you love, I urge you to learn from my mistakes, and reach out for help sooner rather than later.

Jacqueline Marcell is the author of Elder Rage, or Take My Father...Please! How to Survive Caring for Aging Parents (Impressive Press). She is a national speaker and advocate for eldercare awareness and reform, and hosts the Internet radio program “Coping with Caregiving”. For valuable caregiving information, visit her web site at http://www.elderrage.com.

10 Warning Signs of Alzheimer’s Disease

1.Memory loss

2.Difficulty performing familiar tasks

3.Problems with language

4.Disorientation of time and place

5.Poor or decreased judgment

6.Problems with abstract thinking

7.Misplacing things

8.Changes in mood or behavior

9.Changes in personality

10.Loss of initiative