FROM OUR FAMILIES( continued)
Continue to participate in your religious or spiritual practices. If you are accustomed to attending services, plan to maintain this. If that is not possible, ask your minister, priest, Rabbi, etc. to visit you in your home.
Stay informed about the disease and resources. CurePSP is an excellent advocacy organization. Its website provides up-to-date disease education, support groups, peer supporters, clinical trials, and more. Peer supporters are individuals who have had a family member with PSP, and some professionals. You can call these volunteers to ask their experiences and to gather new ideas and suggestions.
Ask for professional help. You and your loved one are dealing with a brain disease that can be very stressful. Don’ t shy away from seeking the expertise of a professional social worker or counselor. A psychotherapist can meet with you and your loved one together as well as individually. Sessions can be on a regular or as-needed basis. The most important advice is to find, and stay with, someone you trust and with whom you feel emotionally safe.
Make mealtime pleasurable. Put flowers on the table. Because food is one of the pleasures your loved one can still enjoy, let them eat what they want, within reason. To avoid choking hazards, cut food, such as grapes or hotdogs, into small pieces. Often, patients will select foods that are easiest for them to swallow— for example, cheesecake or ice cream. In time, by“ going down the wrong pipe,” thin liquids will cause throat spasms. A speech therapist can help you and your loved one to manage this problem.
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Demonstrate to your loved one that they are not a burden to you or others. Most people with PSP fear they will become a burden to their family. Show them that this is not the case. Keep active with your loved one. Maintain a regular and normal weekly schedule for both of you. Take care of yourself. Also, don’ t forget to hold your loved one’ s hand, give them a hug and a kiss, and tell them you love them as often as you can.
VII. Taking Care of Yourself
Al Nixon
Taking care of yourself is just as important as taking care of your loved one. You will not help your loved one if you are constantly stressed, tired, sick, frustrated, or angry. These emotions arise frequently, but by taking care of your physical and mental health, you will be able to cope with them better. Just as listed in the section about taking care of your loved one, many of these same thoughts and ideas apply to you.
Isolation is not healthy. You must get out and stay in touch with family and friends. Often, you will have to initiate these contacts, as many people are not sure how you want to handle your situation. Have coffee with friends. Go to the gym or health club to get some exercise. Play some golf, tennis, etc. Invite people to your home to visit. Don’ t feel guilty doing things for yourself. You need to stay connected to family and friends; you need them now, and you will need them when your loved one is gone.