Let’ s look at each of these goals in more detail:
1. Do whatever I can to keep Ann as well as possible, for as long as possible.
• Moved from a large home to a condo
• Found Ann a personal trainer
• Arranged, and receive major contributions from, a wide group of healthcare practitioners: movement disorders neurologist, Licensed Clinical Social Worker, rehabilitation physician and his patient-centered team, swallow test and training, computer training, home physical therapist, an aide from a home health company( who became our acquired family member)
• Maintain an excellent diet.
• Minimize medications.
• Keep Ann interested in life and invite friends to our home.
• Protect Ann from over-activity.
2. Keep our lives as normal as possible.
• Ann still shops almost every day, and she directs the cooking.
• She still sleeps in a regular bed.
• She wears normal underwear whenever possible.
• She does her email.
• We have Sunday dinner with the“ kids.”
• We celebrate holidays as usual.
• We still go to our country place almost every weekend.
• We eat in restaurants( familiar ones work the best).
• Until very recently, we continued to travel to favorite destinations.
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3. Give Ann control over things she can control. For example:
• What we buy to eat
• Which movie we are going to see
• Where we eat out
• What we watch on TV
• What time she wants to go to bed
• What clothes she wants to wear
4. Blame the disease when things happen.
• Never get mad at the patient.
• Keep perspective and use self-talk:“ No big deal.”
• See humor and use self-talk:“ Never a dull moment.”
• Try not to panic when there is blood.
• Try not to blame yourself for accidents that, unavoidably, happen.
• Blame the disease.
5. Learn to accept help.
• People often want to help. Recognize and embrace that.
• Become better at letting the kids know that I need their help, and when.
• Return to the same places( shops, restaurants) with Ann, where we are recognized and where people reach out and show understanding.