Coping with the Tragedy of Alzheimer’s

Caring for a parent with Alzheimer’s, the progressive brain disorder that erodes memory and cognition, is a challenge. But for children watching the deterioration of their beloved grandma or grandpa, it’s more than challenging. It’s heartbreaking.
 
Maria Shriver, California’s first lady, is an outspoken advocate for Alzheimer's awareness. Her father, Robert Sargent Shriver, founding director of the Peace Corps, was diagnosed with Alzheimer’s in 2003. Shortly after, she wrote the children’s book, What’s Happening to Grandpa?

Her work on behalf of this disease is now about to reach a much wider audience. Starting this Sunday, HBO will air “The Alzheimer’s Project,” a four-part documentary that looks at this illness and the people whose lives have been affected by it. Shriver served as an executive producer of the series. Part 2—“Grandpa, Do You Know Who I Am?”—is adapted from her book and airs Monday, May 11.

Shriver hopes her experiences will help others. Yesterday, she spoke with MSN Health & Fitness.

Why did you write What’s Happening to Grandpa?

When my father was diagnosed, there was no book for children my age or my children’s age. I felt families were being left out. And because there wasn’t anything out there, people weren’t talking about it. Alzheimer’s was really a “closet” disease. I was hoping my book would be a bridge between different generations so that everyone could talk about Alzheimer’s, and that it would help begin dialogues.

Why is a good idea to include children in these discussions?

If you don’t speak with your children, it’s worse. I’ve spoken with mental health professionals about this. I wanted my children not to be afraid of or be embarrassed about my father. And I wanted my children to be able to answer questions—from their friends who might meet my father—in a way that made them feel empowered to educate their friends.

I believe if you let your children ask you about any disease, some of their fear and confusion goes away. It’s important that children understand Alzheimer’s is something not to fear.

What’s the best way for parents to involve their children in this process?

Every family finds their path in different ways. My hope is to put this film out there, and let people find out what works for them and what feels right.

One of the most dramatic parts of your film is a youngster at the receiving end of a mood swing from a grandparent with Alzheimer’s. What’s the significance of that moment?

It’s important to tell children that people with Alzheimer’s deal with anger, confusion and frustration that come out in different ways, and that it’s scary to people. For me, the way to handle it was to say, “Okay, that’s the disease, it’s not the person.” It’s also imperative for adults to understand that your mother [or father] doesn’t hate you, and that [an outburst] it might be a momentary way [that] the disease [is] acting out.

Can you discuss caregiver burnout?

It’s real, I can tell you that. Seventy percent of Alzheimer’s patients live at home, and 75 percent of the caregiving is done by women, in an uncompensated manner. I think women don’t make the connection between their caregiver roles and their susceptibility to burnout. Women may know it, and stop long enough to feel it, but don’t know what to do about it.

That’s what you hear from a lot of people: “I’m burned out, I’m stressed out, but, if I don’t do it, who is going to do it? So what option do I have?” You have to learn to accept that this is the reality you’re dealing with, and this is what this disease does. You have to push yourself through it.

Do you encourage caregivers to find resources to help them?

Absolutely. There are resources and caregivers’ and support groups for spouses and children. And, as the number of people affected with Alzheimer’s grows, I think you’ll see more support groups, and perhaps more assisted living places. I fully expect that baby boomers—who have transformed every disease and issue put in front of them—will do the same with Alzheimer’s. I hope we’ll see more funded research and that, hopefully, this will lead to a cure.

Are many people in the dark about the resources available to them?

Yes, I think people are very unaware of the groundbreaking work that’s going on that they might be eligible for. A lot of clinical trials that offer hope are underway. You can look for the drugs and clinical trials that are out there.

I call myself “a child of Alzheimer’s” but I also consider myself an advocate for people who are struggling with Alzheimer’s for family members.

More Information on Alzheimer's:

• Long-term Care Options
• 10 Questions to Ask Your Parent's Doctor About Alzheimer's
• 8 Things to Do When You Learn Your Parent Has Alzheimer's
• Dealing with Daily Challenges