May 5, 2016

Alzheimer's Care It’s The Family That Must Adjust

It’s been three years since my mother, Dorothy Katz, entered Gracedale Nursing Home, a facility that is a few miles from where I live in Pennsylvania.

It had been difficult for me as a long-distance caregiver.

It had been difficult for me as a long-distance caregiver.

My visits to her in Florida had been frenetic and tense as I attempted to take care of her financial and service needs while also coping with her increasing frailty and demanding personality.

After my mother settled into Gracedale, our previously stressed relationship mellowed and we began to enjoy each other’s company.

Topic - Nursing Home

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By Laura Katz Olson
Alzheimer's Reading Room

 I even discovered for the first time that mom had a wicked sense of humor and we sometimes giggled together like two young girls. She started to open up, treating me to nuggets about her childhood as well as married life with my father.

All too soon everything changed as Dottie slowly descended into the world of Alzheimer’s.

Eventually, there were only glimpses of the loving mother I had grown to appreciate anew and now she even displayed periodic spurts of rage. Her lifelong optimism and buoyancy (I had always called her Pollyanna) alternated with bouts of despair. At first it left me frustrated and dejected as I never knew who was going to greet me when I entered her room each day.

Nonetheless, I became fascinated with the mental changes and learned to accept her fluctuating moods more dispassionately. My ongoing observations have led me to recognize the multi-dimensional nature of the dementia patient’s brain and how real each of these personality traits is to the person herself. Not only has it made it easier for me to accept my mother’s ever-changing demeanor, including her hallucinations, but also to cope with them more lovingly and effectively.

Let me share some of the roller coaster ride mom and I have taken together since the onset of Alzheimer’s disease. I’m sure many caregivers will relate to these experiences, allowing them to know that they are not alone.

Dottie is known for regularly bursting into song. One particular obnoxious drinking tune is encouraged by the nursing aides; although they think it is cute I usually grimace (mom rarely ever drank liquor in her life). But she also sings Broadway musicals, rock and roll, or whatever comes to mind, often making up the words as she goes along.

Although she has a pleasant voice, initially I would become embarrassed by her loud impromptu performances. These days, I just join in, the two of us in duet as I wheel her down the hall.

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At other times she threatens to hit everyone, including me, with a big stick. An aide doesn’t bring her breakfast fast enough: “I’m going to hit her with a big stick,” she says with a grin. Dottie’s water is not cold enough—again the big stick. She imagines that I am late one morning: “I’m going to hit you with a big stick,” she said.

“Mom, you can’t go around telling people that you are going to hurt them,” I told her each time, gritting my teeth in annoyance.

She would just smirk at me. “I’m going to hit them even harder,” was her usual response.

I discovered a more effective way of dealing with the situation: “I’ll get a bigger stick than you,” I told her playfully. That made her laugh and defused her rage.

Vacation time. My husband and I decided to take a two-week vacation in Florida, where we bicycled, played tennis, ran on the beach, swam and enjoyed relaxing together over dinner (he is the caretaker of his 101-year old mother). I hired an outside aide to stay with Dottie in the nursing homes for three hours each morning to keep her company. I called each day to check on her. After a week, however, mom’s friendly attitude turned vicious.

“I never want to see you again,” she spat out over and over again. “Don’t bother coming home! Stay on your vacation forever.” I had to remind myself that she was just scared, that she felt all alone in this world.

When I returned, she continued the hateful words, pushing me from her. Despite my deep hurt, I reacted by putting my arms around her and repeating “You are safe now. I am home. Whenever I leave I will always return to you.” By the third day she felt secure enough to forget that I had been gone.

One day Dottie seemed particularly pensive, her eyes closed, head cocked to the side and a slight smile on her face. Leaning forward, I blurted out in eager anticipation, “Mom, what are you thinking about.” It’s a question that had been lingering in my mind for months but I dared not ask. What does a blind woman with Parkinson’s disease, who has limited ability for activities, movement or social interaction, think about all day? Is she desperately lonely? Does she ruminate about her past? Are there precious moments that fill her head with joy?

Without hesitation she responded, “Birthday cake. I’ve been thinking about birthday cake.”

Her reactions continued to surprise, and sometimes amuse me. Dottie is tested regularly because she is on blood thinners. One day, a nurse walked into her room and proceeded to draw blood. As she was doing so I said, “Mom, they keep you quite healthy here.”

Without missing a beat she retorted, “That’s too bad for you. I’ll be your burden for a very long time.”

Then there are the weeping babies, meowing cats, barking dogs and unfed fish. In the beginning I tried to set her straight. “Mom, I can’t hear it,” I said when she complained that there was a baby sobbing in the next room.

“Put on your hearing aids” she said. “Somebody should feed the poor kid.” Her agitation spiraled noticeably. The pained look on her face made me realize that she did hear a baby cry—that was her reality. And she wanted to be useful.

I had to adjust. The next time she complained about a cat in need I said, “Okay. I’ll get some food so that you can feed it.” She gave me a huge satisfied smile.

Indeed, she always wanted to help, to feel competent and less dependent on others. “I baked you your favorite pie,” she would say. “I went to the store last night to get the peaches for it.” Or “You don’t have to bother washing my clothes this week. I did it myself.” Or “I decided to go out for dinner last night. I found a great restaurant around the corner. You should try it.”

Dottie was clearly oblivious to her in capacities. “Mom, I said. Your niece is getting married next month. I’ll tell you all about the wedding when I return.”

“Aren’t I going with you?” she asked matter-of-factly. “By the way, I’ll need a new dress and shoes since I’m sure it will be a fancy affair.”

“Everyone wants you to be there and I’d love to take you,” I responded carefully. “But it’s not possible.”

“I’m going,” she said defiantly. “I’ll find someone else to take me. You’re a bad daughter.” It broke my heart.

I found that a person with dementia, despite her mental limitations, can be quite guileful and fully capable of provoking guilt trips. Dottie frequently made statements such as, “The minute you leave, all of the aides are mean to me.” And, “Whenever you go away I never get fed.”

And, of course, empathy is a one-way street, something that is hard to get used to. “Mom, I had such an upset stomach last night. I didn’t sleep at all.”

“Is my breakfast here yet?” she responded. “I’m hungry.”

A person with dementia requires as much empathy as family caregivers can muster but can’t expect compassion and understanding in return. I have to reach her where she is at any particular moment and not where I want her to be.

Dorothy Katz will turn ninety-three this May. For the most part, mom has faced her deteriorating physical and mental condition with acceptance and seems at ease with the multiple facets of her new, volatile self.

It is me, her daughter, who is contending with the sense of loss, agonizing over ongoing matters, and regularly attempting to find new ways of relating to her.

Yes, Alzheimer’s patently takes its toll on family caregivers, but, ultimately, they may grow from the experience.

Laura Katz Olson is Professor of Political Science at Lehigh University since 1974. Her latest book, Elder Care Journey: A View from the Front Lines offers a close-up, personal frame of reference for understanding the U.S. long-term care system. For more about Elder Care Journey, visit

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