Many caregivers believe they should not have to ask for help because they think the help they need is obvious; don’t others easily see how overwhelmed they are? Their spouse’s or parent’s needs seem endless: housework, managing money, cooking, and countless errands…

If you have ever been on the receiving end of the look – the facial expression on a loved one’s face who believes you ought to know what he or she is thinking – you know the face of frustration. As a caregiver, the key to effectively and successfully communicating your needs is through the use of “I” messages. Sentences that begin with “I” clearly state your feelings or needs and require you to take responsibility for them rather than blaming others. For example, when someone says, “I am feeling sad, and I need a hug,” this is a clear message. However, if a person does not receive a voluntary hug, they may send an accusatory “You” message. What they then say is, “You don’t love me.” If we are the recipient of this message, our natural reaction is defensiveness, and the person who needs the hug is likely to hear us say, “Of course I love you” in a frustrated tone of voice.

It is important to note that “I” messages are tricky because they can easily become hidden “You” messages. “I feel you don’t love me,” sounds almost the same as “You don’t love me.” “I” messages that are used to manipulate others often hide a “You” message. An example of this is: “I would be so happy if you would…”

“I” messages can completely change the tone of a conversation. Following are two ways of playing out the same scenario. The first example uses “You” messages:

Ruth is in the late stages of Alzheimer’s disease. One day when her dinner plate is set before her, she merely stares at it. This new development is hard for her husband Bob, who used to enjoy going out to dinner with her on a regular basis. Their daughter Joan arrives for a visit one evening and finds her father losing his patience with her mother as he sternly says, “Pick up your spoon and eat, Ruth!”

Joan: Dad, what are you doing?

Bob: What does it look like? I’m trying to get your mother to eat her food!

Joan: Well, you don’t have to yell at her. That isn’t going to help!

Bob: You’re a fine one to talk. You’re never here to help.

Joan: You never let me help with anything like this. You always say you’re doing fine.

Bob: Well, you ought to be able to see there are lots of things you could do if you just pitched in. When I asked you to pick up a prescription for mother yesterday, you said you were too busy.

Joan: I said I would come by today, and I’m here. Dad, I have responsibilities, too; you always expect me to be at your beck and call.

The messages in this conversation are filled with frustration and anger, and no resolution is evident. The next example will replace “You” messages with “I” messages:

Joan: I feel uncomfortable when either of you is upset. Will you let me help Mom for the rest of the meal?

Bob: Well, I’m uncomfortable when you see me frustrated with your mother. I feel as if you only show up when I’m at my worst.

Joan: I know it must be hard for you to be constantly responsible; I would get frustrated, too, but I need specific ideas of what would really be helpful to you.

Bob: I felt hurt yesterday when you said you couldn’t pick up your mother’s Depends right away, because what it really meant is that I don’t have the freedom anymore to just go out or run errands whenever I want. I miss going out to dinner with your mother. Our world is getting smaller day by day.

Joan: I can understand those feelings. My work doesn’t give me the freedom I’d like to have to be able to help whenever you need it, but I can commit to coming over two nights a week so that you can have the evening out. Would that work?

By reading the above exchange, you may think that it doesn’t sound natural or plausible. As with any new skill, “I” messages take practice. They don’t feel natural because we don’t generally use them. “You” messages are more commonly used but usually lead to resentment. There are many benefits to “I” messages:

• Raising a problem or issue: I’m concerned about your safety living alone.

• Returning a problem to the person who raised it: I’m not comfortable providing suggestions without knowing your thoughts on the issue first.

• Asking for help: I’d like to take a day trip offered by the senior center on Saturday. Would you be willing to stay with Mom for the day?

• Setting limits: I can’t be here every day, but I can come over two nights a week.

• Expressing gratitude: I really appreciate your help. It frees me to do other relaxing things.

Using “I” messages does not guarantee that others will use them with us. We can change our own behavior, but we cannot change how others act. “I” messages make it more difficult for people to argue with your feelings, and they leave room for others to express their point of view. When the person you are speaking with continues to use “You” messages, the tone of the conversation can still be positive if you stay focused on expressing yourself with “I” messages. It is not unusual for others to take some time to notice your “I” messages, especially if you are known for frequently communicating with “You” messages.

If clear communication is your goal, the words you use to convey your messages do matter. Choose words wisely and you are more likely to get your desired results.

Communicating With a Memory-Impaired Person

In his book, Show Me the Way to Go Home, Larry Rose recalled his experience of being diagnosed with Alzheimer’s disease: “[The doctor] talked more to [my wife] than to me. There was talk of the frontal lobe, this lobe, and that lobe. I had no idea what they were talking about. The words ‘frontal lobe’ reminded me of a quotation that I’d heard a long time ago: ‘I’d rather have a bottle in front of me than a frontal lobotomy’ I smiled when I thought of that!”

Chances are, the doctor and Larry’s wife thought it was odd for Larry to be smiling about his diagnosis. Larry’s recollection of this event points to the importance of clearly communicating with someone whose memory is impaired due to Alzheimer’s disease or another form of dementia. Larry made sense to himself; most memory-impaired people make sense to themselves. As their communication skills deteriorate, it’s up to us to try to figure out their messages. Many experts call this “joining their journey.” When we try to understand the person from his or her point of view, we are more likely to be able to communicate with them successfully. However, this is not always easy.

We can still tap into the sense of humor of someone with dementia whose verbal skills are diminishing. People who can no longer do think, speak, or act in customary ways can still make jokes – and often do so at their own expense. Author Dorothy Seman once watched squirrels playing outside the window of an adult day center when one of the clients said, “We’re pretty squirrelly in here, and no one calls us cute.” To make others laugh is a great gift, and one that people with memory impairment can both give and receive.

One way to effectively communicate with a person with dementia is to understand that the person isn’t deliberately trying to aggravate people around them. People with dementia have good days and bad days, just like anyone else. At times, they may resist whatever it is we want them to do. The reasons are simple and logical:

• Fatigue
• Physical discomfort or pain
• Frustration
• Fear and/or confusion
• Environmental discomforts

For many people with dementia, it can be challenging and exhausting to get through a normal day. Everything they do may take enormous brain power. Fatigue, both mental and physical, becomes a part of life.

It is easy to understand that a person with dementia feels frustration, fear, and confusion. Imagine if you could no longer perform tasks that were once easy for you – even dressing and grooming. In addition to losing the ability to do simple things, imagine how frustrating it would be to not be able to make other people understand that you’ve lost those abilities. A person will make many mistakes if they are always confused about what is expected of them. Fear can set in when a person with dementia sees their world as unfamiliar and strange, and they are not sure where they are and who they can trust.

As for other factors that may cause people with dementia to resist doing what we ask, surrounding environments are often too loud, too crowded, too cluttered, or too unfamiliar. They may feel overwhelmed by too many distractions.

Oftentimes when their verbal skills diminish, people with dementia communicate with their behavior. They also read and observe our behavior and find meaning in our body language, facial expressions, and tone of voice.

Once we understand the perspectives of people with dementia and the discomforts they often experience, we can be proactive in communicating with them. For example, we can:

• Give the person time to “tune in” to what we’re saying

• Be patient and refrain from rushing the person

• Let the person set the pace and scope of the conversation

• Create a comfortable emotional and physical environment

• Use short sentences that state what we want in positive terms

• Give directions one step at a time

• Use concrete, descriptive words (“on the table” instead of “there”)

• Limit choices (“Would you prefer the grilled cheese sandwich or the tuna sandwich?”)

• Provide multi-sensory cues (e.g., hold out a towel and soap at bath time)

• Respond to the feelings of the person with dementia, not the words

• Avoid arguing or confronting; recognize that reasoning may not work either

• Be willing to take the blame for miscommunications

It is important to note that if you are the spouse, child, or beloved friend of someone with dementia, normal conversations may no longer be possible. Your relationship will change, and you are likely to grieve for what once was and cannot be restored. Find a trusted friend or counselor to help you through the process. At the same time, don’t be too quick to dismiss what remains in your relationship with your spouse, parent, or friend. People with dementia still have the full range of human feelings, and they still want to be helpful and show love and compassion. Be open to being surprised by joy.

For more information about memory loss, contact your local chapter of the Alzheimer’s Association by calling (800) 272-3900 or log on to: www.alz.org or the Alzheimer's Disease Education and Referral Center at www.alzheimers.org.

Keeping a Journal

 Nineteenth century author Henry David Thoreau kept a journal of his reflections for the last 25 years of his life. His devotion to this practice resulted in literary classics such as Walden and the essay, On Civil Disobedience. In Nazi-occupied Amsterdam, a young Jewish girl penned her daily experiences, thoughts, and feelings, and today, we know her through The Diary of Anne Frank. Such memoirs have a popular appeal because they reveal the strengths and weaknesses of the human spirit. We are drawn to these stories as they tell us something about our common search for truth, beauty, and meaning in life.

The shelves at a local book retailer will reveal dozens of books – essentially diaries – based on the experiences of those who have cared for loved ones with chronic medical conditions, notably Alzheimer’s disease. In many instances, an author may not have started to write about their personal journey with the goal of publishing in mind. On the contrary, these family caregivers used writing as an outlet for their feelings and as a means of coping with their situation. Their words reveal a wide range of thoughts, feelings, and actions, and writing enabled them to learn about themselves and gain some control over seemingly uncontrollable circumstances.

Caring for a loved one invariably evokes many strong feelings such as despair, hope, sadness, joy, anger, tenderness, guilt, and empathy. Keeping these intense feelings bottled up inside can be unhealthy. A helpful tool for identifying these feelings and expressing them on a private level is to write them in a diary or journal. An ongoing account of one’s vague ideas and abstract problems can be made concrete and more manageable. Through stream-of-consciousness writing, opportunities often arise that clear the mind. By charting one’s course during a stressful or confusing time, patterns may emerge that lead to problem-solving and self-discovery. The dark side of one’s personality may have a chance to become less ominous and the lighter side may become better appreciated. A written record may also serve as a reminder of past pitfalls to be avoided and successes to be celebrated.

Writing on a regular basis requires some discipline. Following are a few simple guidelines to follow:

• A journal’s most valuable quality is its complete flexibility. It is important to make it your own forum for self-expression. Let go of your inhibitions and do not bother editing what you’ve written – this is your private project and no one else’s business.

• Where and when you write must fit into your lifestyle. Your comfort is essential. If you can write during periods of stress, then do so. If not, wait for times when you are not distracted.

• The tools you use to write do not matter as long as they are right for you. Use a pen, pencil, spiral notebook, typewriter, word processor, or whatever. Keep things simple in order to make writing as easy and satisfying as possible.

• Beginning the process is probably the most difficult step. You may develop a pleasurable routine after a month or two. Ten minutes a day may be a good way to start. As Will Rogers once said, “Even if you are on the right track, you’ll get run over if you just sit there.”

Keeping a personal journal may be just the kind of safety valve needed to relieve daily pressures. It may not feel therapeutic at first, but when you review your recorded thoughts after a while, trends and patterns are bound to emerge that will help you decide to change or stay the course of caring for a loved one. Not only will mistakes be readily apparent, but progress will be charted as well.

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