Spotlight: Patty McNally Doherty

Spotlight: Patty McNally Doherty Advocacy: Founder of The Unforgettable Fund, a nonprofit devoted to raising money for Alzheimer's research. Blog: The Unforgettable Fund Blog Work: Owner of Table 13, a graphic design firm in West Palm Beach, Florida specializing in traditional print, advertising, branding and Web.

What moved you to start The Unforgettable Fund?

First, try to understand the mindset of a daughter who stood beside her father for 11 years as he slowly lost every connection to the world around him. The effect this loss had on his spouse, my mother, was devastating. It was heartbreaking to watch my four brothers and two sisters try to be strong around him. They were all so loving. Even though the emotional burden was carried across many shoulders, because of geography, the day in and day out management of my father’s Alzheimer’s disease was carried by me.

So – my motivation to start The Unforgettable Fund was the truth. I wasn’t hearing it. I wasn’t seeing it. What I did see was Alzheimer’s Disease romanticized by Hollywood and hidden by protective spouses of national leaders.

I saw how Alzheimer’s “specialists” deceived the public in nursing homes and assisted-living facilities. I saw how reputable memory clinics charged desperate spouses thousands of dollars for worthless evaluations and ineffective action plans.

I saw how Aricept was hailed as the wonder drug even though research proved its effect to be minimal. But once you’re on it, you won’t come off it, because your family will be told things might get worse without it.

I saw how good and kind people averted their gaze around Alzheimer’s Disease, shamed and embarrassed to have it in their families.

But worst of all I heard people lie. They lied about money, they lied about oversight, they lied with the best of intentions. They lied with concern and compassion, believing they were doing the right thing.

Who’s lying?

Why would the loudest voice for Alzheimer’s disease – The Alzheimer’s Association – want people to believe nursing homes cost half of what they actually do? Hard to say. For years, the Alzheimer’s Association posted the average cost of a nursing home to be $42,000 per year when by 2005, the cost was up to $74,095 per year. The misinformation went unchallenged for years, and other sites unwittingly spread it. We investigated and found the numbers hadn’t been updated since the 1990s. When the Alzheimer’s Association ignored our requests that the information be corrected, we posted the information on The Unforgettable Fund blog.

In September 2006, the Association stripped the information from its site but still promotes the misleading figures on page 10 of its popular Money Matters brochure.

Why would the Alzheimer’s Association do this?

I don’t know. I think it’s complacency; advocacy that’s lost its way. No one who truly believes they will beat Alzheimer’s Disease would ever allow incorrect data to remain posted for five years.

Where did The Unforgettable Fund get the $74,000 figure?

MetLife Mature Market Institute issues an annual report on nursing home costs. The MetLife Mature Market Institute reported in 2007 that the average cost is $213 per day or $77,745annually. This info can be found here on page four.

MetLife Mature Market Institute was footnoted on the Alzheimer’s Association stats page, that’s how we found it. They just never bothered to read it. They put up the page and let it sit there for years. They’re the spokespeople for Alzheimer’s Disease. They’re our advocates.

What do you want people to do?

Easy – quit thinking someone has all of this figured out. They haven’t. We need change and we need it fast – big, massive, meaningful change when it comes to Alzheimer’s.

Who helped you launch The Unforgettable Fund?

Almost every person I met. But the decision to go public about my father’s illness and our family’s experience with Alzheimer’s Disease was made by my brave mother, my six siblings. We all agreed that Alzheimer’s needed to be exposed for what it really and truly is, so that no family would have to repeat our experience.

What it really and truly is?

Alzheimer’s Disease is not an old person’s disease. It’s really a young person’s disease. While it’s hosted by our aging seniors, its symptoms manifest in those who care for the victim, those who have to remember. My father didn’t suffer until he was close to death – his illness played out in years and years of suffering by his wife and kids. People my father loved with all his heart became collateral damage. He would swing at my mother, bellow at my sister, scare the birds off the patio. He had no idea what he was doing.

While I understand the need to protect the legacy of these elders, we can’t allow the harrowing effects of this disease to remain a secret. People need to know what’s coming.

What’s coming?

In the not too distant future, when our children are adults, millions and millions of people – among them you and me – will be unable to recall our names, our spouses, or where the toilet is. There won’t be enough caregivers to help us. There won’t be enough money to support us. There won’t be enough beds to hold us. Our adult children will be the first generation to deal with a nation of parents whose bodies have outlived their minds.

What are your long-term goals?

As a daughter of an Alzheimer’s victim, my goal is to beat Alzheimer’s disease, with a bat. As a mother of two sons, my goal is to keep the crushing burden of a parent’s Alzheimer’s off the shoulders of my children. As an American, my goal is to live in a nation with the courage to take this disease apart. As a human being, my goal is to not forget without a fight.

How do you raise awareness for The Unforgettable Fund?

Word-of-mouth through our donors, in newspapers and on TV by local and national media, and by friends telling friends. We refuse to spend a penny of donor money on fundraising, marketing or promotional materials. Instead, we rely on the networks of others to bring our message forward. People don’t respond when a stranger is talking to them, but when a friend or colleague is. It’s hard to find someone who hasn’t been impacted by the disease.

What role does the blog play?

Blogging is a much easier way for the non-Web savvy among us to post quickly and easily. We use the blog for updates and conversations, while The Unforgettable Fund Web site serves as a beacon, a marker, that can stay unchanged. Our blog is a two-way, or even possibly, a million-way conversation.

Do you devote funds solely to research? What about raising awareness?

Spending money to raise Alzheimer’s awareness is like raising awareness for the rising sun – we get it already! What people don’t get, however, is the fact there’s no escape. If you yourself don’t get it, you’ll be taking care of someone who does. The statistics are staggering.

With that awareness, you’d think funding mechanisms would be popping up all over the country, but they aren’t. That’s because this disease is still hidden away in back bedrooms, nursing homes and assisted living facilities.

If we don’t get a handle on prevention, treatment or cure soon, when the boomers start falling, we’ll be the generation that swamps an already shaky healthcare system. We must address this disease. Funding of Alzheimer’s research must become a top priority – morally and economically, we have no choice. We act like we have a choice – to ignore, to put off, to dismiss. We don’t. We’re screwed if we don’t take action now.

Who do you admire in the research community?

Alzheimer’s researcher Dr. Malcolm Leissring of the Mayo Clinic in Jacksonville for his relentless pursuit of Insulin Degrading Enzyme (IDE). I’m awed by the way he examines the workings of this enzyme and can explain it in a way I can understand. Personally, I admire him for taking time to learn about my family’s experience with a disease he had only worked with in his lab. He gave us something we hadn’t had in a long time - hope.

I also admire Dr. Claes Wahlestedt of Scripps Florida for his Alzheimer’s work. He quickly agreed to help form The Unforgettable Fund, believing that many people should share the enormous burden of funding Alzheimer’s research.

I greatly admire Dottie Carson of South Florida’s Alzheimer’s Association because she can’t resist encouraging us. Dottie straddles two worlds - donor and victim, knows of what she speaks and isn’t afraid to move mountains. I have met many, many Alzheimer’s experts – she’s the real deal.

Last I admire bloggers Mona Johnson who publishes The Tangled Neuron, Gevera Bert Piedmont who publishes Had a Dad, and Gail Rae Hudson who publishes The Mom and Me Journals.

Did caring for your father change your career path?

I was a creative director in an ad agency when my father was diagnosed. I started my own company, Table13, so I could have the flexibility I needed to help him and my mother. I do business by referral only and am blessed with excellent clients.

What advice do you have for people thinking of starting a nonprofit?

Do it! Quick! We haven’t got all day! What are you waiting for? Scientists need your help! Just don’t keep any money for yourself, get it all into the labs - that’s the pledge you have to take.

If you want to start a nonprofit and keep money for yourself, get a job instead. I find it unconscionable to make an income off the suffering of people with Alzheimer’s, or any disease or affliction. I have major issues with the CEOs of 501(c)3 charities who make hundreds of thousands of dollars in salaries and compensation. And don’t even get me started on what CEOs of nursing homes make.

I have to ask. Do you have an example?

The CEO of ManorCare, the nursing him my father died in, makes more than $16 million, yes, $16 million, a year. The parent company of the nursing chain is called HCR Manor Care. I found his pay by going to CEOPayWatch. They’ve since been bought out by The Carlyle Group – another investment company buying over 20,000 nursing home beds.

What are your rewards?

First, knowing there are dollars in Alzheimer’s labs that wouldn’t be there without The Unforgettable Fund. Second, reading the notes of encouragement that come with donations – the great majority are $10 and $20 checks written in shaky hand. These donors get it. They’ve traveled the same path my family did, or they’re just starting out. They all know how bad it is, that we have to stop it. They won’t forget and neither will I. Hopefully, you won’t either.

Last, what advice would you give to new caregivers?

First, I have to say this - no matter how strong you are, or how strong you think you are, or how much support you have, Alzheimer’s will bring you to your knees. It has nothing to do with you, and everything to do with the disease.

Now here’s my list:

1. Be brave always. It takes a lot of courage to support someone through this disease.

2. Be honest. Don't pretend to be what you're not. If you can't handle it yourself, ask and insist upon getting help. And don't be polite about it - you'll sink like a stone if you don't get help.

3. Be patient. It's a long haul of a disease.

4. Be understanding. You will never unravel the mind of a demented Alzheimer's loved one. Instead use your own memory to recall their qualities.

5. Be agreeable. Don't argue, you can't win. Instead, agree agree agree. Yes, you want to take a walk. Yes, it's the middle of the night. Yes, we'll have a snack instead. Yes, this is perfect. Yes, you can sleep with your shoes on. Yes, you're exactly right about this. Yes, I love you, too.

6. Speak respectfully. These are grown adults, who have lead long, challenging lives. They are not children, they are not idiots, they are not to be spoken to like children, they are not to be spoken to like idiots.

7. Don't yell. Just because someone can't understand you doesn't mean they're deaf.

8. Touch, hug, hold hands, pat, rub, kiss. Touch again, hug again, hold hands again, pat again, rub again, kiss again. Repeat often. Again and again and again.

9. Smile. Laugh. Smile. Laugh. Be the light that walks into a dark room. Be the smile that eases anxiety. Be the cause of laughter.

10. This is not your disease. You can breathe and run and plan and remember. Stay attached to the world around you.

11. There is nothing shameful about this disease. And anyone who doesn't get that cannot serve as support. You'll sink if you lean on someone who has no buoyancy.

12. Resentment will eat you alive if you have siblings who don't care. Release them. You have enough to carry right now without the added weight of, "he was mom's favorite and now he doesn't even return my calls.” Let it go. For now, if you're going to stay above water, you have got to kick off the old, smelly, waterlogged, boots. Let it go. Kick your feet. Swim! You can do this!

13. Stay sober. I mention this because it's a really easy time to self-medicate. This disease hurts a lot. But you stand a better chance of actually helping if you're actually standing.

14. Be proud of what you're doing. There is no higher standard to hold oneself to than this - honor your parents.

15. Love never fails. This disease will show you what you're made of. And if you're anything like me, you'll be surprised how inadequate, incompetent and unqualified you'll feel. No one walks into this willingly. Not the person with Alzheimer's, not the spouse who survives, not the kids who find themselves shoved into the role of parental advocate. We're all attached and we all go into the drink when Alzheimer's pushes someone in. The stronger the tie, the more certainly I can say, you're going off the deep end. There are no landmarks, there are no buoys, just lots and lots of water - in the middle of the living room! In the heart of our homes, we're submerged!

It takes time to learn to swim in this water. At least four million people in the U.S. have Alzheimer's. Figure most of them are attached to at least one other person. That’s eight million people! One minute you're on dry land, the next minute you're really wishing you’d built a boat.

16. Help the boat builders. Fund Alzheimer's research. Find scientists who are doing Alzheimer's research and get as much money directly to them as you can. I started The Unforgettable Fund to do just that. After I washed ashore when my father died, I looked back at the ocean I swam in for 11 years and said – These people need friggin’ boats!

17. Tell the tale. Keep telling the tale. Keep spreading the word. Keep talking. Keep shouting. Keep remembering.

Learn more about Patty McNally Doherty.

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