Excerpts

Creating Meaningful Time, not just Passing the Time When you encourage someone, you build hope. When you build hope, you support dreams and celebrate achievements. People with dementia still have hopes and dreams and achievements. What can you celebrate today? Paul was a very bright lawyer and a man who adored his family. As he experienced the progression of his dementia, however, he became very lonely and longed for more companionship than his family could provide. However, as is the case with most families, his wife and daughter were convinced that Paul would resist having a companion. So Paul and his wife, met Abby and me, at a local coffee shop. Abby was a young girl aspiring to be an actress who excelled in all areas, but needed more experience singing in front of others. Having just graduated from college, Abby was at the crossroads of "what's next in life." Paul loved opera and, while he confessed he could not sing, loved to listen to music. Fortunately, he also couldn't help but give advice to others. Our purpose in arranging this meeting was to manage the conversation in such a way that Paul would be comfortable spending time with Abby. After Paul and Abby seemed comfortable with each other, the plan was to suggest they get together, because it seemed like they would enjoy each other's company. However, before I had the chance to say anything, Paul said to Abby, "Hey, why don't we do this? A few times a week, let's get together, and you can sing in front of me, and then we can talk about what you should do in life." His wife and I were in shock! We approached the situation thinking we had all the control, but in actuality, Paul, the man with dementia, took control. The outcome was better than we hoped for and it was all his idea! Establish Goals Conventional wisdom says that people with dementia don't have goals. This is a myth. People with dementia do have goals. Have you ever noticed that a person with dementia always has a place to go or someone to meet? Despite whether these places or people exist anymore is irrelevant. Their desire emphasizes the point he or she does have goals. One way to prove this point is to ask "What would you like to accomplish today?" Take a minute, put this book down and ask your loved one this question. Welcome back! Now that you know that the person has goals, we can discuss how to set and accomplish these goals. The first step is to distinguish between realistic and unrealistic goals. Here is where conflict may arise. Typically, when asked, the person with dementia will want to do something that's not realistic such as, "I want to go to work." The care partner often tries to bring the person from his or her "reality" to actual reality, which usually results in conflict. The person with dementia is left to do one of two things: move on by him or herself or argue with the care partner. If the care partner responds in an argumentative manner, it only serves to escalate the situation. Remember, as the care partner, you are the one who can change, not the person with dementia. Not because he or she doesn't want to, but because you are the one who has the power, the understanding and the ability to recognize that there are two different "right" answers. In addition, when the frontal lobe of the brain is damaged (see Chapter 2 to learn more about the parts of the brain), a person's ability to reason or make appropriate judgments can be impaired. This means that when a person argues with a person with dementia, the person without the disease has an advantage and should not use it to challenge the person with dementia. Lastly, it is important that the care partner recognize that some of the goals are unrealistic, but some of them will just look different once they are accomplished. In the latter case, the care partner needs to adjust his/her expectations and be prepared to "roll with the punches," so to speak. As you become comfortable, write down the goals of the person with dementia. It is good to refer back to this list and see if he or she wants to change these goals at some point. You can write your goals as well and look at them together. Give Up "Control" As care partners, we become experts in trying to control every situation. We hope to minimize the unexpected, make life better for the person with dementia and, in the process, make our job easier. Actually though, trying to maintain control constantly can create a great deal of resistance and make everyone's life a little bit harder. Routine and structure are both very valuable, but these don't equate to control. By asking the person with dementia their opinion, you are giving him or her control, something we are all keenly aware of when someone takes it away. While a person with dementia needs help, and may not be able to function as he or she did before being diagnosed, the care partner does not need us to take over his or her life. Unfortunately, this is often what we do without realizing it. Points to remember: * While it may not seem to you that they can answer questions correctly, don't look for a right answer. * Ask questions that don't have a "yes/no" answer or the person will always say "no" because he or she might be feeling insecure or unsure. Instead, start by asking questions that give options, such as, "Should we do the laundry or dust the furniture first?" * Remember that the questions aren't just about the other person, but about both of you. Meaning, when it's time to eat, both of you should eat together, and when it is time for exercise, it is time for both of you to exercise. Excerpted from I Care: A Handbook for Care Partners of People with Dementia by Kerry Mills, Jennifer A. 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