ESSAY—ELDER CARE

 Caregiving: The Unplanned Journey
by Jacqueline Marcell

      I had always been the light of my parents’ lives, and I know that all my successes in life are directly attributable to their 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 fifteen-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 parents, barely able to stand up themselves—proudly pushing 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.

      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 eleven 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 screams and yells and he stands over me and 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, but then, I’d never gone against his wishes before.  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 help him and make changes he didn’t want.  I was stunned to see him get so upset over the simplest things, even just running the washing machine, and there was no way to reason with him.  It was heart wrenching to have my once-adoring father turn verbally and even physically abusive toward me.  I have never been so devastated.

      I took him to his doctor and was astonished that he could act completely normal when he needed to.  I couldn’t believe it when the doctor looked at me like I was the crazy one.  Much later, I found out that my father had told her not to listen to anything I said, that I was going through the change and I was a little “wacky”, and I just wanted his money.  (Boy, do I wish he had some!)

      Weeks turned into months, and then nearly a year passed as I became trapped in my parents’ home trying to solve the endless crises.  My father refused to see another doctor, and I couldn’t hog tie and drag him to one, but I thought about it!  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.

      It was such a Catch 22.  I couldn’t leave him alone with my mother because she’d surely die from his inability to care for her.  I couldn’t get him to accept a caregiver in the home, and even when I did, no one would put up with him for very long.  I couldn’t place her in a home because he’d take her out.  I couldn’t put him in a home because he didn’t qualify.  They both refused any mention of an assisted-living situation, and legally I couldn’t force them.  I was trapped in an unbearable tragedy.

     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 darling, 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 who knew what I’d been going through casually mentioned that she’d heard 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 compassionate 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 and thorough medical exams, the doctor uncovered Stage One Alzheimer’s in both my parents.

      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 two to five years and improve cognitive functioning.  Keeping a person in Stage One longer, which is intermittent and mild, delays full time care and nursing home placement.  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 working with us to get the right combination of medications, we finally started to make some progress.

      Then I worked on optimal nutrition.  Meals on Wheels was a huge help, delivering fresh, nutritious food daily.  This cut down on the shopping and cooking chores and it supplied a visitor to the house.  I also worked with the doctor on vitamin therapies, Vitamin E particularly, which has shown to help dementia patients.

      Once my parents’ brain chemistry was properly balanced, I started behavior modification techniques, using rewards and consequences on my obstinate father.  I noticed that when “Amazing Ariana” (the only caregiver I hired who could ever manage my father) and I rewarded his good behavior with affection, attention and raving words of praise, he tended to be a lot nicer. 

     Conversely, when he screamed and yelled at us, we tried to solve the crisis, but if he persisted, we calmly walked away 100 percent of the time.  It didn’t work overnight, but since there was now a “payoff” for good behavior, we started to get more of it.  (This worked only because his short-term memory was still quite good and he was in the very beginning of dementia.)  When that didn’t work, we learned to calmly use distraction, redirection, reminiscence, and we strived to validate his frustrated feelings to get through it.  But many times, we found that the offer of his favorite ice cream usually worked the best to get him in the shower!

      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.  “Aw, I’m not going there.  Everyone is too old!”  But once he realized that Mom was going without him, he decided he’d better go, too.  It took a few weeks to get him into the routine, but 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.  I was as stubborn as my father, as I really didn’t want to go hear other people’s problems.  But then, 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 the horror and the heartache 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 “Ten Warning Signs of Alzheimer’s Disease”, flashing lights and buzzers 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.

     After my father passed away, peacefully and at home in his bed, my mother was terribly unhappy, so I sent her on a cruise to Mexico with her caregiver, Ariana.  (No, not for me, I get terribly seasick).  She absolutely loved it, so I booked a second cruise to Hawaii, which was her lifelong dream, to give her something to look forward to.  Though she was in a wheelchair and on oxygen at night, they went on all the island tours.  She gambled, played bingo, drank a little wine and enjoyed all the shows.  From the videos that Ariana took for me, it’s clear she had a wonderful time, and she is always blowing me kisses and telling me she loves me.

     But just as their car stopped at the airport to come home, as she sat in the front seat in her new Hawaiian outfit, pooka shells and straw hat, just when Ariana asked her if she was ready to go home yet, she sadly shook her head and said “no”, and then suddenly passed away without warning, and thankfully, no pain.  I know she was determined not to go home to more of life in a hospital bed and wheelchair, unable to do anything for herself.  She was so eager to be with my father and was bound and determined to go.  The entire day care staff came to the funeral and stunned me when they said that she had told them everyday that she was so excited to be going on her Hawaiian cruise, but then she was going to go be with my father.  May we all be as fortunate to be able to pick our time, to the minute, after such a wonderful last week of life.

     Now I celebrate the long lives my parents had, which created and molded me, and even though I’m terribly sad to be without my biggest cheerleaders, I’m very proud of what I accomplished, and grateful that they have finally been released from the bodies and minds that were no longer working for them.

Valuable Resources

1. The Alzheimer’s Association at 800-272-3900 http://www.alz.org.

2. Eldercare Locator at 800-677-1116, and the National Association of Area Agencies on Aging: http://www.n4a.org.

3. Links to numerous valuable resources: http://www.elderrage.com/Links.asp


Jacqueline’s Recommendations


1.
Consider buying long-term care insurance before the diagnosis of any illness.  A comprehensive policy will cover caregivers in the home as well as at a care facility.

2. Consult an elder law attorney for durable power of attorney for health and financial matters before a diagnosis.  Locate one through The National Academy of Elder Law Attorneys: www.naela.com

3. When your loved one does something that strikes you as illogical or irrational, call the Alzheimer’s Association immediately for information on local services and dementia specialists in your area at 800-272-3900.

4. If Alzheimer’s is diagnosed, ask about medications that may slow the progression of dementia: Aricept, Exelon, Reminyl.  Ask the doctor whether he has ruled out reversible dementias, such as depression, or a B12, folate or thyroid deficiency that can cause dementia-like symptoms.  Also, ask about antidepressants, and Vitamin E and anti-inflammatory therapies.

5. If your loved one becomes unusually aggressive, ask the doctor about anti-aggression medication options.

6. Optimize nutrition with fresh foods, which are full of anti-oxidants.

7. Try behavioral intervention with 100 percent consistency: Reward good behavior and don’t respond to negative behavior.  (Note: This method will only work on individuals who are in the very early stage of dementia and still have considerable short-term memory.)  Also calmly use distraction, reminiscence, and validate their frustrated feelings as well.

8. Gradually get loved ones involved in adult day care and other daily activities, for physical and emotional stimulation.

9. Attend a support group regularly.  Look into online support groups as well.

10. Celebrate the life that is left and stop focusing on the dying.  You are required to make sure your loved ones are safe, that they have the right doctors and medications, but you are not required to let caregiving destroy your life—nor would they want that for you.

 10 Warning Signs of Alzheimer’s

 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

END

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