SPECIAL OFFER: - Limited Time Only!
(The ad below will not display on your printed page)
Leeza Gibbons, former talk-show host and Dancing with the Stars celeb, has a new book out this month that I wish I'd had 10 years ago. It might have changed my life. It's called Take Your Oxygen First: Protecting Your Health and Happiness While Caring for a Loved One with Memory Loss. My mom and I (and other family members) sort of clumsily learned to care for my dad as he suffered advancing confusion, dementia, and weakness from a series of strokes. But we somehow missed the whole idea of taking care of ourselves. Gibbons says this is typical -- and it's why she wanted to write the book after everything she learned from her own experience with her mom's Alzheimer's disease.
More than 50 million people in this country provide care to an adult who is ill or disabled. "Most of them do it in silence," says Gibbons. "They often don't have help or advice. Not to mention the black hole that siphons off all your money. People just unravel. They lose faith."
When I met Gibbons last week, it was a revelation. It was like I'd met a soul mate, someone who instantly understood the "dark place" I'd been to during those years before Dad died. I realized her experience was so similar to mine, and yet I'd never had the chance to talk to someone like her before. I could have talked to her for hours, and I realized the therapeutic value of sharing such experiences. Wish I'd found a support group and done it sooner.
There are lots of books full of advice about caregiving, but I never got very far with any of them. This one, however, pulled me in with its warmth and compassion. Gibbons writes fearlessly and without filters about the details of her family and what happened, while two doctors fill in the medical background and psychological advice. It's a helpful combination. And boy, did I relate to Gibbons and her family and the stages they went through. The denial! The martyrdom! The depression and hopelessness. The hope that a miracle would just fix it all. And if not that, maybe drinking would help. Yep, been there.
My dad started losing his way in the mid 1990s. I was in my 30s, living in Dallas, where I was editor-in-chief of an upscale lifestyle magazine. One afternoon at the office I got a call from him. "Hi, Babe," he said in his eternally cheerful way. "Hey, I took a bus downtown, and I don't really know where I am. Can you come get me?" He seemed like himself, only really confused, and my heart sank. This was new and totally unexpected. What do I do? I told him to ask a passerby what street he was on and prayed he'd stay put till I could find him. I made some excuses and raced downtown with my heart pounding to get him and drive him home to far North Dallas.
I felt scared and, yes, angry. Why should my peaceful life be interrupted in this way? Then I felt guilty for having those thoughts. Gibbons says this is all part of the typical experience, but I didn't know that then.
Soon there were other signs of trouble. At 70, Dad was still driving, but he was getting lost more often. He'd never exactly been Magellan when it came to navigating, so it took us a while to see that it was a serious problem, and getting worse. One evening when I was at Mom and Dad's he went out to pick up some takeout food from one of our favorite spots nearby and didn't come home for hours. I went to look for him, thinking he'd been in a car accident. I couldn't find him anywhere along the obvious route. He'd gotten lost but eventually, somehow, found his way home. My mom, who has a history of depression, was extremely upset, angry with Dad, and probably really scared. I tried to keep my cool and think of something helpful. But what?
It was becoming clear that it was no longer safe for Dad to be driving. The decision to take away the car keys is a tough one for a family to make. My older sister and her husband rode with him to assess his skills, and we consulted my younger brother, too. It was time to take away his freedom, and Dad accepted that decision pretty well. It was depressing for the rest of us, though -- an ending, full of memories of my tall, strong dad driving us on summer road trips, tapping his gold wedding ring on the steering wheel while exuberantly singing along to "Sweet Caroline" or "Raindrops Keep Falling on My Head" playing on the radio.
Meanwhile, Dad's other symptoms were getting worse. Mom was convinced he had Alzheimer's. The doctors did a number of tests and said there was no way to know for sure, but it was more likely he'd had a series of small strokes. Dementia and memory loss happen either way, they said. Not much we can do. If Dad had cancer, for example, I think Mom would have talked to her friends and asked for help. But because it was dementia, and unpredictable, it had a stigma to her. So we really kept it all to ourselves for the longest time. This, of course, is not healthy for anyone, according to the book.Moving In
I had to leave my quaint Victorian-era apartment in Dallas because the building was going to be renovated, so I decided to move in with Mom and Dad for a while and try to help. That's when I realized how much Mom was trying to handle by herself. Dad's short-term memory was so bad he couldn't remember if he'd eaten or not. And he frequently said that he "wanted to go home." Sometimes when he got really agitated about it, we'd put him in the car, drive around a while and then return, saying, "Now we're home!" Sometimes it worked, sometimes it didn't.
Some days it was really hard to remain patient with him. Mom would argue with him, trying to get him to realize he was mistaken. That was futile, of course, and only upset Dad, who didn't understand what he was going through. Gibbons' book explains how natural it is to want to fix things, and offers better alternatives for reasoning with someone in this type of situation. Wish we'd known more then. Instead, we drank wine. Lots of wine. And fought our depression. Oh, and my love life during this time? Nonexistent.
The worst part for me was at night. Dad would often fall asleep during the day, which was good for Mom because it would give her a little time for herself. But then he would be awake and wandering after dark, when I inadvertently ended up on the night shift. Mom was exhausted, so she'd be asleep in another room and wouldn't hear him. But I would. He'd get up, dress himself in often inappropriate clothing, and try to sneak out. Occasionally he made it out and got lost.
Sometimes the police or a good Samaritan would bring him home. Eventually we had to lock him in his room. But I felt like I never got enough sleep. I'd lie awake, feeling like I had to be vigilant no matter what. He'd get up and knock on the locked door, sometimes several times a night, and I'd have to go talk to him and try to calm him down and convince him he was home and could rest. But sometimes he got angry and agitated, and once he even took the locks off the bedroom window, removed the screen, and climbed out. I was so tired and scared and stressed out that sometimes I felt like I was losing my mind. (Again, the book shows how typical this scenario is, and offers help.)
But there were good times, too. Dad was passionate about the Dallas Cowboys and loved rooting for them to win. We had a blast watching games together. He loved good food and wine and always complimented Mom and me on our culinary creations. He adored old musicals, and knew all the lyrics of songs in shows like South Pacific and Showboat. He enjoyed car trips to visit my sister's family near Fort Worth, and was sweet to his granddaughter Page, who was 6 or 7 then. He also loved music, and with the help of a wheelchair, we continued our family tradition of going to the Dallas Symphony Christmas concerts. The soaring organ and climactic notes of the choir always made him tear up with joy.
In 1998 I got a great job offer to run a magazine in New York, something I'd dreamed about all my life. I agonized about what to do. Mom and my sister talked with Dad and they agreed I had to follow my dream and go. Mom hired some part-time help, which would be a financial strain but a necessity. My sister pledged to be there for my dad, and I'm forever thankful for her sacrifices. She took Dad out for breakfasts, and lunches, and movies, and musicals. She hired and paid a personal trainer to help Dad continue to get some exercise. She visited often and brought photo albums and treats.
And I moved away and started my new life. Looking back on my journals from that year, I realize I felt tremendous guilt. I never really talked about it with anybody, but I developed some health problems that were probably related to all the stress and internalizing. (Gibbons' book says that's typical, too.) I visited my family in Dallas every few months, and I tried to call Mom every day. Sometimes she'd cry in despair and say she didn't think she could go on. Those calls were hard for me. I knew she was depressed and needed help, but I felt so powerless. I wish she'd had more support.
Dad had good days and bad days, and was getting weaker, which thankfully made him less likely to wander. We were so lucky that he always knew who we were. And he was always appreciative of the little joys in each day. While he would soon need full-time care and probably a nursing home, we never actually had to make that decision. It could have been worse. I realize now from Gibbons' book that we had many common experiences, but some of hers were much worse. Perspective, even in hindsight, helps.Endings
The last time I saw Dad was the Fourth of July, 2002. It was a warm, breezy July evening in Dallas. Mom and I made fried chicken and potato salad, and my sister and her family joined us for a picnic at the local park. Dad sat in his wheelchair under the stars and oohed and ahhed over the exploding fireworks.
A month later, back in New York, I called Dad before my Saturday morning yoga class. He sounded happy to hear from me and asked, "When are you going to come see me?" "Soon, Dad, soon," I said. Then I told him I loved him. He died later that day.
Also see the four-part documentary series, The Alzheimer's Project, on HBO throughout the summer:
Originally published on LHJ.com, May 2009.