loving my friends . . . and Alzheimer’s awareness
We all need (and, in my opinion, should want) to be aware of and learn more about this Soul Thief. “We are all invested in the function of memory–in cultivating its development and maintaining its capacity. It is central to our daily life, and Alzheimer’s disease poses a considerable threat to this cherished possession. . . . We do not all have to be directly involved in Alzheimer’s to participate in creating a climate in which, ultimately, knowledge, awareness, advocacy and a compassion can grow to override this devastating disease. It is a collective, worldwide effort, and every citizen counts.”
Recently, I’ve re-connected with Carol, a friend I’ve known more than fifty years. Well, I shouldn’t say we have re-connected, for we have always kept in touch (with Christmas cards, occasional e-mails, school reunions) and when we were both living in Denver, we now and then saw one another and visited – and knew what was happening in our lives. Friends are always friends – whether or not we are in constant contact.
Carol and her husband Richard have moved back to Denver near her daughter. Richard, whom I have also known for more than fifty years has Alzheimer’s disease and it is progressing rapidly. When I think of Richard, I especially remember his wit and humor and his tennis talent. Richard was a very very VERY good tennis player (could have probably been professional). These friends are two of my husband’s favorite folks to visit with – and I heartily agree with him.
It is sad to think of Richard now enduring this insidious disease. It is heart-breaking to think of Carol’s heart breaking and the trials she has endured and is enduring as she fights Richard’s disease alongside him.
God bless my friends as they travel this road.
Lisa Snyder is a clinical social worker at the University of California, San Diego (UCSD), Alzheimer’s Disease Research Center (ADRC) and has written a book based on interviews with people diagnosed with Alzheimer’s. The interviews in her book Speaking Our Minds were taped in-home with Alzheimer’s patients who offered their reflections about the impact of the disease.
Lisa Snyder writes that “. . . Although we have a wealth of valuable scientific, professional, and caregiver literature, literature that addresses the various complex dimensions of the disease, we are only beginning to explore and make public a crucial perspective: the subjective experience of the person diagnosed.”
Richard Taylor writes in Alzheimer’s from the Inside Out that first-hand accounts of the disease are few, “and all end about the same time in the progression of the disease: Stage 3–when the disease forever blocks the individual’s ability to provide self-reports of the disease’s impact. On the other hand, there is a growing body of personal journals by caregivers of people with Alzheimer’s.”
He further writes that . . . Like the Gospels of the New Testament, these recollections attempt to recapture the essence of a loved one through a collection of the loved one’s words and actions. Like the Gospels, they are more the reflections and perceptions of the writers than the loved one. When placed next to each other, they do not always agree. They sometimes contradict each other. They do not all include the same words and events.
“We were all going along quite productively in our lives until we were confronted by memory loss, confusion, nervousness, loneliness, and isolation. It’s as if you’re reading a book and someone has torn the pages out.”
“Sometimes we can laugh about all of this instead of crying, but I wouldn’t wish this on anyone.”
“It seems like Joe’s having to do too much, but I can’t do anything about it.”
“I don’t know what I would do if I didn’t have my faith. That’s the only thing that holds me together. I know that all I have to do is call on the Lord and he’s right there. I ask him if it be his will, to take this Alzheimer’s away but if it isn’t, help me to accept it.”
“But sometimes it seems like everything frustrates me and I want to throw something across the room. So I do. Then I feel like a goof when I have to pick it up.”
“The worst of my affliction is not being able to speak. When I try to speak, I see what I’m going to say in my mind, and then the words turn around and go further and further out of sight, and I can’t pull them back. Then when I go to speak, they aren’t there!”
“I’m almost 71 and I’m not amazed that people die. So it isn’t the death. It’s the loss of oneself while you’re still alive. There are other ways to go through that process, too. There are all sorts of illnesses where one could have no control over themselves, and I would cry if I had one of them too.”
“Poor Erika has to do all of the driving, thinking, and putting things together. Instead of my doing things for her, now she’s the one who jumps in and gets things done. I can’t do the things to help her that I could do previously.”
“Sometimes I give Erika a hard time just to be nasty. I guess it’s because I’d like to be doing things myself instead of having someone telling me to do this or do that. I’m a little boy now. I have a mommy to take care of me. It’s not a very good feeling.”
“You cannot physically fight Alzheimer’s. You have to acknowledge what’s going on and get with other people who have the same problem. Help each other as much as you can.”
“If I forget something, I want people to be mild with me. Do what you have to do, but you appreciate a touch of love rather than a touch of hostility. Hostility will cause you to rebel. Treat others as you would like to be treated. You wouldn’t like me to be beating on you all the time.”
“A person with Alzheimer’s disease is many more things than just their diagnosis. Each person is a whole human being.”
“I hope that there is a rainbow at the end of the tunnel.”