By: Elayne Forgie
When I arrived at Ed's house, it was only two in the afternoon and Ed was just sitting there in his wheelchair, eyes closed and in complete and total silence.
His paid caregiver sat beside him, playing games on her smart phone, seemingly oblivious to the fact that Ed was right there.
Ed is in the mid to late stages of Alzheimer's disease, and there were things she could be doing with him, in that moment, that would not only help her connect with him, but would go so far in improving his day, and his overall sense of well-being.
Ed's wife says that as Ed began to lose more and more of his ability to initiate conversations or verbalize his fears, wants and needs, his caregivers, not knowing what to say, what to do, or how to connect, stopped trying to reach him.
His days became routine, each one the same as the last. He slept for hours in his wheelchair every afternoon, and fought his 9:00 p.m. bedtime. He lashed out when they woke him to eat or to shower and he was restless, fidgety and angry. His family told his doctor he was getting worse. So his doctor increased his medications to help with his "anxiety" and to help him "sleep better" at night. A few weeks later, his wife finally reached out to me because Ed appeared sadder, depressed, and she didn't know what to do.
As Alzheimer's disease progresses and the person becomes more and more disconnected from the world around them, caregivers so often, and so unintentionally, lose their way. That's okay, in part because there's no manual for this, no right or wrong. When the doctor hands you that prescription for Aricept, most don't hand you a book to tell you what do, or how to reach the person you love, when they seem to be slipping away. But there are ways that caregivers, like Ed's, can reconnect with their loved one.
Ed's wife and his paid caregiver were very open to trying new ideas, exploring new techniques and finding ways to visit Ed in his past memories. They just didn't know where to begin. So we began at the beginning. With the understanding that for Ed, success would lie in the doing, not in the completing of any activity we tried.
Along our journey, Ed's caregivers saw how the power of touch, a soft voice, and a warm embrace had a positive effect. They learned that Ed still liked to hold hands; hated the smell of lavender but seemed to like the smell of French vanilla and cookies and cream.
They learned how heartbreaking silence is, and were stunned to see the powerful effect music can have on someone with Alzheimer's disease. They began to play music on and off throughout the day and discovered Ed would smile and sing along just a bit, with some of his old favorites.
They learned Ed loves to go for long walks in his wheelchair and would respond to the scents and sounds of nature. He liked to smell flowers along the way and seemed to enjoy watching kids play in the park.
As Ed became more engaged with his wife and caregiver during the day, he was able to stay awake a little more each afternoon, and that helped reduce the number of evening bed-time battles.
On a rainy day they stayed inside, and they learned that Ed can still color; he can complete a four-piece puzzle and fold the kitchen towels -- sort of. When they dug out his old favorite western movie and put it on TV, they gave him a small glass of root beer and a little popcorn and he was able to follow along and watched for almost 30 minutes.
They learned Ed likes to look at his army photos and pictures of his childhood years, but the pictures of his old dog greatly upset him. They were pleasantly surprised that when he did get upset and they gave him the teddy bear his granddaughter left behind, he calmed down, and the bear became his constant companion.
Learning how to reach the person you care for will take some trial and error. It may not be easy and you might want to quit. But if you keep trying and persevere, you'll discover that just when you think all is lost, you've reconnected with the person you love.
On a particularly tough day, after Ed's wife tried everything to reach her husband, and nothing seemed to work, she just bent down beside him, held his hand the way he liked, looked into his eyes and simply said "Ed, I'm right here and I love you."
And on that day, for the first time in many years, Ed told his wife that he loved her too. But he didn't do it by saying the words; he did it by showing her in his response. The response he showed to her touch; the small smile she saw on his face, and the single tear that fell from his eye.
She said she understood that it was okay to have days when she didn't get through to Ed. Days when nothing would work and she couldn't connect, but she said she wouldn't stop trying.
She said that her, Eddie, her groom, was still there, and not so lost after all. And that when all is said and done, her peace comes from knowing this disease will not take away the love they will always have for each other.
This story was originally published on Alzlive.com, a website for caregivers of people with Alzheimer's and dementia. For more tips and support, visit the site here.
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