This is the first installment of a series of articles published by Methow Valley resident Don Reddington which will explore the issues of living with Alzheimer’s Disease. The articles were written in collaboration with Raleigh Bowden, M.D., and Methow Valley News reporter Laurelle Walsh and originally published in the Methow Valley News. Read the entire series “Living with Alzheimer’s”.
Alzheimer’s Disease (AD) is the most common form of dementia affecting older people. Much has been written about Alzheimer’s, and much of it is available on the Internet. This series is not intended to provide clinical expertise on the disease, rather a personal perspective from the patient’s point of view.
We — Don and Jerry — both have AD, and we have chosen to write a series of articles about living with the disease. We feel that an insider’s perspective would be an effective way of communicating on behalf of other people who are living with Alzheimer’s. We want to share our experiences and how we would like others to treat us. This is our personal story to help others who are struggling to find their voice.
Communicating with a person with AD requires patience, respect, and understanding. We are not being difficult deliberately! We want to develop communication techniques that will be more effective for those of us with Alzheimer’s, and for those around us.
Memory impairment is the hallmark of Alzheimer’s disease, but language difficulties are also present at the earliest stages of the disease and become more noticeable as the disease progresses. At first the patient is not able to find the right word, later they cannot identify an object or recognize people. The person becomes unable to follow any coherent train of thought, and eventually is unable to understand what he hears.
In the early stage of AD, a person may forget or substitute words when they cannot find the one they want. Sometimes, we notice that while people are talking to us, he or she will just walk away. In some cases, they might pretend that they are listening but they are not.
As people with Alzheimer’s, we want to be listened to. We want to stay connected with family and friends but it is difficult for both. For us, it is an important part of our life! In the later stages of the disease, it may be very hard to understand anything that we say. Do not be discouraged! You can still talk with us. Sometimes, if you ask “yes or no” questions to the person with Alzheimer’s, we can nod or do a head shake to answer you. Sometimes people will avoid us. Usually, it is because the person does not know what to say to us. Don’t give up. Keep trying.
When we are first diagnosed, fear or shame may prevent us and others from telling family and friends. One thing that can really help all of us is to send out a letter or email to loved ones that makes them aware of the situation. They will really appreciate it because they want to know of such changes in our lives! Loved ones appreciate that we have shared this news with them. It makes the situation easier for all to talk about. Being open and honest makes everyone feel more comfortable with the situation.
Using the computer in the early stages can help keep our communication skills sharp. In fact, some people, like Don, might even feel improvement in their memory.
Having Alzheimer’s causes us to appear angry sometimes. Typically, it is because of the frustration that we get because we are unable to communicate or be understood. It can be a very difficult moment! We have a right to be angry. It helps when people hang in there with us in an understanding manner. We suggest that you talk slowly and connect with us on a “feeling level.” Take the time to listen and do not interrupt. Those of us with AD can often speak more clearly when we are relaxed, and in a quiet place.
We need patience, respect and understanding. If needed, make sure the person has their glasses, or hearing aid. Also, it is important to make and maintain eye contact. We are not trying to be difficult. If you ask questions, go slow and wait to see if we acknowledge. If we don’t respond, it is because we don’t understand the question. We lose so much of the words in our life that it is difficult to respond.
We’ve noticed that people seem almost afraid to touch those of us with Alzheimer’s disease. It’s not contagious! In fact Jerry, who is living with a later stage of the disease, really likes and responds to hugs and human contact.
Finally, it is hard for us to be around young folks. We love our grandchildren but sometimes it is hard to understand them due to fast talking and talking over each other. With help, it can be made worthwhile for both parties.
When communicating with us and others with AD, relax, lean forward, and smile when talking to us. If we are unable to respond to you, we are still able to smile, gesture, or give a caring touch. Remember, communication requires patience, respect, and understanding. Living with AD is not easy!
Our thoughts are with you.
— Don Reddington and
Jerry Bristol, AD League