June has been Alzheimer’s Month and Brain Awareness Month. Like many in the Sandwich Generation, I cared for a parent with dementia while still working full-time and providing for my at-home children.
My mother was a Supermom to five children. All our lives she was physically active and fun, even traveling the world and winning tennis tournaments with her doubles partner. After her marriage of 25 years ended in divorce, she remained socially engaged with a large circle of friends. She worked to raise money for charities, including serving on the boards of nonprofit organizations. She also worked as an accountant for a private tennis club and for her homeowners’ association. She was an independent woman who lived a very active life.
I had begun to suspect something was wrong when Mom agreed to leave her home of over 50 years in Kansas and move to Minnesota to live with me and my family. The symptoms had appeared gradually, of course. Over the previous two years, my siblings and I had noticed that mom was occasionally confused and unprepared for our holiday visits, almost as if she wasn’t expecting us even after 20 years of the same routine. We discovered little notes written to herself, important mail that had gone unopened, the hoarding of unusual items in the garage, misplaced things in cabinets and closets, expired food in the refrigerator, and other oddities. We came to find out her finances were in complete disarray, and she hadn’t filed her taxes in three years. Privately, secretly, she was scared, but she kept it together quite well when we talked with her. This was just part of the inevitable aging process, we thought. Until we realized that it wasn’t.
By the time Mom was diagnosed with dementia (and later Alzheimer’s), it was almost too late for her to make sound decisions about her ongoing care and end-of-life preferences. We met with an attorney who guided us through the standard paperwork and Advance Health Care Directive. But this process was not set up for dementia patients.
Since then, I have learned about the Dementia Values and Priorities Tool available through Compassion and Choices, a nonprofit focused on end of life. The tool walks you through the process of providing clear care instructions to your loved ones and takes the burden off of them to make difficult choices when you can no longer make those decisions yourself. The tool identifies diagnostic markers of disease progression and lets you determine the level of care you want at each stage of the disease.
ADVERTISEMENT
According to the Alzheimer’s Association, one out of three Americans will die with some form of dementia, so it is important to complete this process while your loved one is still mentally sound. Documenting your or your loved one’s wishes will give the whole family the confidence that the outcome will be something everyone can support. Immediate family members and others with an interest should keep a copy of the plan and agree that they will support the choices.
Making it available to doctors and other caregivers is also important to ensure that your loved one’s wishes are followed throughout each step of the process.
Remember, you’ll still be working together with family following the death of your loved one. The Dementia Values and Priorities Tool allows everyone involved to grieve free of guilt with the knowledge that they respected their loved one’s values and wishes every step of the way. Be prepared.
Leslie Boie is missions coordinator at Christ Presbyterian Church in Edina, Minnesota. She lives in Minneapolis. She wrote this for the News Tribune.
