What the National Alzheimer’s Plan means to me

With the Obama administration releasing the National Alzheimer’s plan this week, everyone that is an Alzheimer’s advocate is being encouraged to give their opinions about the plan and share their stories. Obviously, through this blog, The Memories Project, I’ve been telling my father’s story all year long.

I think the plan is a good first step, but I am concerned about what looks good on paper may be difficult to execute in reality. I hope I am wrong for the millions of those with Alzheimer’s and their loved ones that care for them. For those of us who have already lost someone to this terrible disease, the plan won’t bring our loved ones back, but we can still participate in the battle.

To me, public education and care services are two of the most important aspects of the plan that must be addressed immediately. Of course, I support research and sincerely hope that one day there is a cure and/or a vaccine. But even a delay of onset of symptoms could preserve the quality of life of so many people. But we need to educate people now, not just about the disease itself, but about preparing for end-of-life issues. No one wants to talk about these things, but we must get over this fear of death. My mom is just now talking to a lawyer about several IRA’s that are tied to a bank in California that my Dad set up decades ago. Nearly five months after my father’s death, and the paperwork is nowhere near being completed.

We have to create better care options for those with Alzheimer’s and dementia. Specialized care is necessary, but there are simply not enough options for those that live outside of large metropolitan settings like my parents did. Of course, there would need to be a huge increase in the amount of care workers and volunteers to provide these extra services. Maybe we need to get creative, and forgive a portion of college loan debt for those willing to volunteer their time for Alzheimer’s care. Young people’s spirits can offer a tremendous lift to those with dementia. Similar programs already exist, but maybe they could be expanded. The long-term unemployed could also be included to build up a corps of caregivers.

One of the aspects of my family’s experience with Alzheimer’s that pains me the most is the fact that my mom worked so hard to get my dad moved to a facility that was near her, but when there was finally a bed opening, he was too sick by that point to enjoy it. She could walk to the new care center, but Dad was so sick he ended up in the hospital within days and never returned to the center. People shouldn’t feel guilty about placing their loved ones in care centers, but they also should have convenient access to visit their lifelong partners. Alzheimer’s is a burden enough without the pain that a physical separation can cause.

Here’s hoping the National Alzheimer’s Plan will increase Alzheimer’s awareness and offer relief for those impacted by the disease.