The give and take of good conversation is a joy. We can be introduced to a total stranger and develop a friendship within minutes if the conversation is open and honest. The friendships formed through the writing of this book were cemented before we ever met each other merely through the process of the writing and with communication that doesn’t require a face to face encounter. When your loved one becomes ill with a disease such as Alzheimer’s, one of the first things you may notice is a change in his or her ability to communicate.
In the earliest stages of Alzheimer’s disease you may notice afflicted people searching for the right word. The halting speech pattern and word searching may not raise a red flag at first. Everyone has occasionally forgotten the word they are looking for or lost a train of thought. This is frustrating when it happens to us. We know what we want to say but can’t get to it. It is even more frustrating when this becomes an ever-increasing occurrence and an indication of more than a fleeting problem.
You may hear people with relatively early Alzheimer’s say things such as, “I needed to go to the….oh, you know….the place where I buy food.” The word “store” has slipped from their minds and trying to retrieve it may become too much for them, so they give you hints like “the place where I buy food.” This kind of halting communication may seem tiresome, but if you remember that even this form of communication will eventually become very rare you will learn to cherish these conversations. Early in the disease, it is words that are used infrequently that are lost, as are the names of people who are seen or talked about only occasionally. As time progresses, commonly used words and the names of people closest to the individual will also be lost.
One way that the Alzheimer’s patient tries to cope with this lack of word finding is to cover. Covering is a term to describe the means people find to keep others unaware of their difficulties with speaking and remembering. Others may try to isolate themselves in order to avoid the challenge of communicating once they realize there is a problem. Some people laugh off an incident as a temporary aberrance, even though the person may be aware that it is happening more and more frequently. Another way in which a person may try to cover for memory lapses is to call friends and family members by a generic term such as “pal” or “sweetie,” or some other term of endearment. If this generic naming gives them a sense of comfort then let it be. The biggest mistake you can make is to put them on the spot by quizzing them on names and facts. Below are some other communication hints and techniques: Look the individual in the eye when speaking to her.
Remember that people with Alzheimer’s are very sensitive to your nonverbal communications and may become agitated if you show irritation, anger, frustration, and similar emotions. Keep your voice warm, calm, and friendly.
Keep it simple. Avoid complex sentences and complex grammatical structure. For example: DON’T ASK: “Would you like to wear your blue sweater or your green sweater?” DO ASK: “Would you like to wear your blue sweater?” If the individual says no, offer the green sweater in a separate question.
When possible, avoid even asking the question and just make a simple statement. “Here is your blue sweater.” When dealing with something that the person dislikes, such as dressing if this is an issue for your loved one, do not offer options just make a simple statement. “Time to get dressed.”
Always remember to speak to the person respectfully. No one likes to be condescended to, including people with Alzheimer’s disease. Cover only one topic at a time. Talking about more than one subject is too confusing and will leave the person with Alzheimer’s confused. Be very specific when you talk. Avoid using nondistinct words, including pronouns. For example: “They’re going to the beach,” is too confusing. “Susan and Fred are going to the beach” is more likely to be understood.
Pick your times to discuss important issues. Usually early in the day is best for a person with Alzheimer’s disease. Do not discuss important issues when the individual is tired, which is usually later in the day. Patience. Give the person time when he is trying to express himself. Do not rush to finish his sentences or guess at the word he is trying to find. Do not brush off an unfinished thought and move on to something else. Give the person time to put the words together if he can. You will look back on these times of stammering speech with longing, so don’t be too impatient to move ahead too fast.
Do not put the person with Alzheimer’s on the spot. Do not, for example, say “Do you remember when we….” Instead, help jog the person’s memory: “I remember when we….”
In later stages when communication may be nonexistent, keep talking to the person even if she cannot talk back. And a warm smile and loving touch do as much or more to communicate love as verbal communications.
As people begin to lose the ability to express themselves you may find them becoming depressed. Something is wrong with their minds and they may be noticing it, now they have the added problem of not being able to explain what they are thinking or feeling. As a psychological defense they may be angry or accuse you of not listening. They may deny having been told things that they cannot remember. If you are not aware of their illness these accusations and their anger can seem to come out of the blue. Do not argue these issues – doing so will only frustrate and embarrass the individual. Let it go and, if it helps, blame yourself rather than the person with Alzheimer’s: “Maybe I forgot to tell you. I’m sorry.” It is far more important to consider the psychological well-being of the person at these times than to argue the little issues. Above all it is important that you try to keep your frustration in check. As a caregiver you already have huge concerns about the future. No doubt ever since the diagnosis you are left wondering what will become of your loved one and, indeed, what will become of you. These fears and worries are to be expected and certainly deserve attention. Unfortunately your loved one is not the person you should share these concerns with. She is in the vortex of this and cannot help you. There are those who can — friends, your church, and both informal and formal support groups. If it is your spouse who has Alzheimer’s, the most natural thing in the world though will be to turn to your partner and vent. Don’t do it. Resist at all costs. Your spouse with Alzheimer’s just can’t help you, and to try to get him to will only make you feel dismissed.
“I can’t even talk to him anymore. He just doesn’t care about what I am going through.” If you are measuring your loved one’s ability to “care” based on his or her healthy body and mind, you may say these words: caring requires understanding on their part. Caring requires being able to put themselves in your place. It requires cognitive integration of incoming and outgoing messages. The person no longer has these capabilities. The brain controls our emotions as well as cognition and motor behavior. Perhaps one of the hardest things to accept is the fact that even though your loved one looks “normal,” his or her brain is changing. This is an organic reality, not an attitude.
As the disease progresses communication deteriorates on the part of the person with Alzheimer’s. You often find yourself straining to understand what has been said. This is particularly frustrating when it is clear that the individual is upset about something – it is often difficult to put your finger on the source of the distress and the exact nature of the emotion, which are sometimes clear and sometimes baffling. At these times it can be very effective to cut through the content and pay attention to the process of what someone with Alzheimer’s (and other conditions with impaired communication) says. They’re often communicating the emotion pretty effectively, even if the specific content of the communications makes no sense. While the communications may appear garbled and nonsensical at times, you can cut through the apparently meaningless content by paying attention to the emotions your loved one is trying to convey. “She left me at school and I didn’t have any way of getting home,” may appear to be a confused communication where your loved one is regressing to childhood and speaking about a mother or other caregiver. While that may be true cognitively, what is happening emotionally and what is the thought communicating? Pay attention to the emotions and the nonverbal information conveyed – is your loved one afraid? Lonely? Sad? Feeling particularly lost or abandoned? If you attend to the context of the communications you may also pick up important clues. What led up to the communication? Put yourself in the shoes of the person with Alzheimer’s to try and understand his or her reaction.
Empathize with the emotional content of the communications even if you have not understood the content. Pay attention to nonverbal as well as verbal behaviors and you will be able to deduce with a great deal of accuracy what the person is feeling.
Focusing on the emotional content also sometimes provides a sufficient distraction. Sometimes, once the person has made the emotional connection, the specific communication is forgotten and the person is satisfied. It doesn’t always work, but does enough so that it is worth trying each time you are at a loss to understand the content of conversations.
We often don’t remember how complicated speech is and what a complex series of neurological events it requires. Even initiating a sentence can be difficult for someone with Alzheimer’s – initiation is a problem in general. Speech, initiating it, and all of the complicated aspects of adult communication depend on several areas of the brain being intact. With an otherwise healthy brain, we can sometimes compensate if one small area important for speech has a small, circumscribed lesion.
The Alzheimer’s brain has too much global damage for compensation to work as the disease progresses. Given the degree that speech is impacted fairly early on, it is a lot to ask later in the disease for someone to put together comprehensible speech. At times, the best he will be able to do is repeat something another person has just said (echolalia), sometimes over and over (perseveration) until you think you will scream. Remember that this is the best the person can manage. He is reaching out to you without having the communication skills we are used to. If you can, reframe your perception of what communication “should be” and learn to accept what communication the person with Alzheimer’s has to offer – it is all that person has, and all too soon even that will be gone.
Even a one sided conversation can be a rewarding thing if you are communicating with your heart. Tell the person the things that you want her to know, the things that will make her feel loved and safe. Relive your happier moments out loud. Paint a word picture of the moments of your life that were special to you together. You are now the keeper of these memories; share them as stories with the one you love.
There are experts who could tell you in terms most of us do not understand why the human brain is unable to pull up those memories and phrases and names that mean so much to us as caregivers. We ache to hear them say our name or tell us that we are loved. The fact that there is an organic and specific reason why those precious abilities are no longer there will not take away the pain. It does help if you can accept that the brain is an organ that can shut down just as our kidneys can shut down. It is not a willful withdrawal from reality. It is rather a form of brain damage that is cruel in its taking of the things we hold most dear.
There are a lot of good resources out there for helping you discuss the past. “Reminisces” magazine is full of articles and photographs of things from the past. Your family photo album and films are good sources of conversation. Again, do not quiz your loved one by asking; “do you know who that is?” Just point to a picture and make a comment about it. Say something like “doesn’t sis look cute in that dress?” That way the individual with Alzheimer’s is already given the name of the person, but in a way that would not embarrass her. Do not make the mistake about just talking about the past, though. Your loved one needs to talk. Some people are more accustomed to talking about themselves their feelings than others. A person with Alzheimer’s or any other disease, regardless of past history with talking about feelings, needs to know that the floor is open to them and they are free to talk about anything, including their feelings about Alzheimer’s and other pertinent issues. Talk about the present and the future, as well as the past. And remember, having a disease does not mean that it is the only thing that people want to talk about – politics, sports, card games….any subject that was of interest to your loved one in the past should still be topics for discussion. And do not omit humor and laughter!
We are aware of the fact that we refer to Alzheimer’s patients as “them.” It bothers us to even write that word. The problem is they are “them” in the sense that they are not sharing the same reality as you. They may believe that they are living in a different decade, a different part of the world; they are in a different place in their minds when they are in the later stages. If you can respect that and validate the things they tell you, they will feel comfortable talking with you. Validation therapy was conceived beginning in the 1960s and has recently received more attention. Although there are not many studies that look at the efficacy of validation therapy and those few studies that have been run have been quite small (thus yielding results that need to be replicated in larger populations before they can generalize to large groups of people), anecdotal reports about the efficacy of validation have been generally positive. It is basically the idea of joining the individual in his or her reality, rather than correcting the person and trying to force the individual into our reality.
Time is a jumble for people with Alzheimer’s disease – the past, present, and future are intermixed in a way that is confusing for the person with the disease and for caregivers. The reality of someone with Alzheimer’s is foreign to those of us without the disease, but it is their current reality. Meeting them in their place rather than trying to force them into ours often works to improve communication, self-esteem, feelings of peacefulness and safety, harmony, and so on. One caution: choose the times when you engage in validation. Do not validate paranoid ideation, such as often occurs when the individual believes people are stealing or plotting against him or her. In that case, empathize with the individual’s feelings, reassure the individual that he or she is safe, and, if possible, redirect by engaging the person in a pleasurable activity. Use your common sense and you will find pleasant times to join with your loved one in his or her world.
By letting your loved ones feel that they can talk to you and not be challenged about the content of their communications, you will keep the lines of communication open for as long as possible. And when the individual with Alzheimer’s can no longer hold up her end of a conversation, you can communicate safety, love, and respect through your words, your actions, and your loving touch.
Deborah Uetz Author of Into the Mist, When Someone You Love Has Alzheimer’s Disease website http://www.intothemist.us
