Archive for the ‘Alzheimer's and Dementia’ Category

“Go away…asshole.” These were the first words I heard from Norma Jean, about 3 minutes after we met. She wasn’t too happy about my attempt to lift her foot in order to stretch her leg. And so I stepped back, waited a few seconds, then sat down next to her and offered to put some cream on her hand. That she could accept.

Her husband had hired me because a few months earlier she had simply stopped walking. Now she was in a wheelchair, newly in a nursing home, her whole life changed. At that first session her husband told me he was very concerned about her walking. He asked me to massage her legs.

I got the sense that he was hoping that the massage would help her walk again. Massage is good for many things, but it can’t make an Alzheimer’s patient remember how her legs are supposed to carry her from place to place. Because that’s what I suspected was happening: she had simply forgotten how to walk. Or had lost the will to try.

At the time, Norma Jean was in a stage of Alzheimer’s that, in some ways, seems to be the worst stage of the disease. The person knows there is something dramatically wrong with her, but cannot understand what it is. This causes a great deal of anxiety and often leads to hostility.

She would often repeat the phrase “I’m sick” several times during each session. If she felt that no one was listening, she would say it louder and louder. Her aide, her husband and I would try to validate her feelings and explain that we were there to help her. Most of the time our words provided little comfort.

During this stage of her illness, Norma Jean still showed flashes of creativity and a sense of humor. When she wasn’t feeling agitated she would often laugh and try to joke around. One day, after a round of repeating “I’m sick” about twenty times, she sighed and exclaimed, “I wish I was Normal Jean.”

As her disease progressed, she stopped saying “I’m sick.” She continued to verbalize her thoughts, memories and experiences in ways that were usually incomprehensible to me. Sometimes she would ask for constant validation, asking “Do you like me?” over and over again. It was during that stage of her illness that I had the most fun with her. As I assured her over and over again that not only did I like her, but I loved her, she would frequently say those words to me. Even if someone has no idea who you are, it still feels wonderful to have her look into your eyes, smile, and exclaim, “I love you!”

It is three years since I first started working with Norma Jean, and although she is now “sicker” according to objective measurements of disease progression, this disease process has taken away her ability to know that something is wrong with her.

During our sessions she says very little and her affect is tranquil, untroubled. Sometimes she sleeps the entire time; other times she opens her eyes and smiles at me, sometimes she even laughs. Every once in awhile I still get to hear “I love you.” Although the farther away she goes, the harder it is for those who love her, at least in her experience the progression of the disease has brought her some peace.

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What do you send someone who is sick? The default is something that says “get well.”

But what do you send someone who will never get better, who has a progressive, incurable illness? In some cases, it seems, people will still send a “get well” greeting.

Norma Jean, a patient with advanced Alzheimer’s, recently turned 82 years old. Her son and his family sent flowers for her birthday, with a balloon that said “Get Well Soon.” I wonder what they were thinking when they chose that balloon.

Was it her grandchildren who picked it out, who were too young to understand that Grandma was never going to get better? Her son, or his wife, trying to be brave in the face of a terrible, progressive disease?

I was initially so glad to see that they had sent her flowers, then saddened by the sight of the balloon. The patient would never know about her family’s wish that she get well soon and, oddly enough, that seemed like a blessing. She would not have to look at that balloon and say to herself “that’s not going to happen.”

If the balloon said “Happy Birthday” instead, would that be any better, considering that she has no capacity to comprehend her birthday, or even any knowledge of how old she is? She also received a card for her 82nd birthday from a friend of hers that reads, “When we’re 88, we’ll still be friends.” Somehow, even though she can’t understand it now, it seems fitting that her friend chose to honor the sense of humor that I know Norma Jean used to posses.

I hope one of my friends gives me a card like that when I’m in my 80s, and I hope I’ll be able to get the joke.

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Mrs. C., who is ninety-something and is in the mid-stages of Alzheimer’s, spends the greater part of her days sitting on a sofa, reclining on a chaise lounge, or lying in bed, drifting in and out of sleep. I’ve seen her leafing through her mail, though she appears to have forgotten how to read. Sometimes she will get up and wander around her apartment, a common behavior manifested by people with Alzheimer’s. A professor I once had described it as “looking for herself.”

On the whole, Mrs. C. does not talk much. When she does, she is unfailingly polite, and she uses old-fashioned phrases like “I should think so!” and “I beg your pardon?” and adjectives like “marvelous!” and “lovely!”

During our massage sessions, Mrs. C. is very attuned to her senses of hearing and sight, as well as touch. Often we will hear a cacophony of horns coming from the street, 17 stories down, or a siren approaching from five or six blocks away, and she’ll ask me “what on earth is that all about?” Or she will listen quietly to the music I play for her (she seems to like Brahms and Beethoven best) and then react when there is a dramatic moment, or when the music ends, by exclaiming, laughing, or even clapping her hands. At some point during every massage she will say “that feels so good!” as if it’s the first massage she’s ever had.

Her bedroom is on a southwest corner, and gets direct, unobstructed afternoon light. One lovely fall day, with scattered cumulus clouds drifting across the sky, provided a study in the play of light and shadow.

For the first 10 minutes of her massage, the sun was hiding behind one of those clouds. Suddenly the light in the room brightened dramatically and Mrs. C. said, with surprise, “wow! when it’s sunny, it’s really sunny.” I met her there, sharing her wonder at the brightness of the light, and then just as suddenly it was gone. We laughed, and waited for the light to come back.

Each time the sun returned we reacted together, laughing and exclaiming with joy at the beauty of the light. I asked her if she knew why the sun was doing that. She said, “no, I have no idea.” I pointed out some clouds in the sky and explained how they move in front of the sun, making it dark, and then when they move away, it gets bright again. “I didn’t know that,” she replied, delighted.

Although this disease has taken so much from Mrs. C., she has the capacity to experience wonder at the sensory information that her brain is still able to process. She’s reached a place that so many people strive for through meditation practice, a place where the thinking stops and what is left is awareness. For Mrs. C., there is no such thing as past, or future, there’s only now.

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I was about 5 minutes into my session with Norma Jean, an Alzheimer’s patient, when she asked, “So, what do you do?” I was sitting next to her with my hand on her shoulder, rubbing her trapezius muscle. “You mean for work?” I asked. “Yes,” she replied. “I massage people,” I said. “Oh, that’s terrible. Just awful,” she exclaimed.

I started to explain: “I do this, what I’m doing here,” pointing to my hand on her shoulder. “Well, let’s have some more of that!” she replied. “That feels wonderful!”

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