VI. Tips for Taking Care of Your Loved One’ s Emotional Needs
Al Nixon
Brain disease is a very emotional and frightening malady. One does not know how the disease will progress, what symptoms will( or will not) occur, and whether they will cause pain and discomfort. Everyone with PSP has a different experience and progresses at a different rate. Your loved one’ s physician will ensure that they have the best care and medications for depression, anxiety, and other mental symptoms. But this is not all that can or should be done to help with your loved one’ s emotional well-being. I hope the following ideas will help caregivers contribute to their loved ones’ emotional well-being. The list is in no particular order. Also, because each person is different, some pointers may not be appropriate or relevant to your situation.
Keep family and friends in your lives. Isolation is not good. With your loved one’ s approval, tell people what disease they have and what symptoms may eventually develop. Encourage family and friends to visit and remain involved with you. Educate others on disease features, such as slow reaction time. Demonstrate certain helpful responses— for example, allowing your loved one to take time to form a response to a question. Slow the pace of conversations. Address remarks directly to the person with the disease. Gather in small rather than large groups. I often recount the following incident, of which I am not proud, but was able to correct because my wife and I consulted with a social worker regularly. At the end of one of my wife’ s sessions, and during the routine, 10-minute summary for me, our social worker said,“ During conversations when friends visit or when the home healthcare aide is there, Eileen feels like a 5th wheel. All of you are talking, and by the time Eileen can formulate her thoughts— usually 2 to 5 seconds— the topic has changed, and she cannot participate.” The social worker continued,“ It is up to you, the caregiver, to slow down the conversation, direct questions to Eileen, and keep her involved.” Needless to say, I felt terrible. Fortunately, this was pointed out to me, and I was easily able to correct the problem. It had never occurred to me this was happening. I am sure this is also the case with many caregivers.
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Encourage family to support the person and to demonstrate their caring. Ask appropriate family members to join you on visits to the doctor. They will also provide you with a“ second set of eyes and ears” to ensure all the doctor’ s questions and your questions are answered.
Stay active and go outside. Take walks, including when your loved one is in a wheelchair. Visit a park or museum. See a movie. Eat a meal in a restaurant.( Make sure that someone accompanies your loved one to the restroom. Use family restrooms when available). For as long as possible, maintain appointments for your partner with the barber or hairdresser and manicurist. Sit outdoors when possible. Try to walk around a mall. When at home or when you leave the house, make sure that your loved one is“ dressed up,” so that they feel good about their appearance.
Stay involved in life. In all likelihood, your loved one has some special skills. Even if they can no longer perform them, ask for their opinions and let them help make decisions. With their input, generate a list of activities that make them happy and do those. For example, you may choose to play games, such as Scrabble, dominoes, or cards. However, be aware that the person with PSP will have difficulty holding objects. Also, because the person’ s eyes become fixed, their field of vision becomes smaller. Hand dexterity and visual changes will impact the person’ s ability to play games, especially those that spread across a table. Read a book together, or play music or books on tape. Because rapid-fire movies and TV shows may be difficult for your loved one to follow, try family movies such as Disney, sitcoms with straightforward plots, or nature programs.