Tradition

Every Sunday, Rob Backlund of Burlington gathers envelopes and stamps and prints out seven copies of a letter.

Daily letters to the leader of the free world are an example of how Backlund has come to live with the reality of having a loved one with dementia.

It’s a journey that began in 2010. His mom Susan was 58, a teacher who was nearing retirement. Backlund was living in France and says, “We knew something was wrong. And when my dad and I talk about it now, we realize that there were symptoms that we didn’t recognize.”

When he returned to the U.S., Backlund was encouraged by his then girlfriend to attend a support group for family caregivers. “No one my age had any idea what it was like. But it was incredible when I walked into this room full of people and I’m a whole generation younger, but they knew what it felt like.”

He credits the geriatric social worker who ran that group, and says, “For me, it helped me to talk through what was going on. And that helped me get to a place where I could say this disease is not all right, and something needs to be done.”

Family members who care deeply and want to help, but are not on the front lines of daily care have a special opportunity, Backlund says. “What I realized is that the people providing the daily care for family members with Alzheimer’s or dementia, like my father was doing, are so overwhelmed that it’s hard for them to get involved with volunteering or advocacy,” he said. “But I was able to.”

He’s a member of the volunteer Leadership Board of the Vermont chapter of the Alzheimer’s Association. In that capacity, he has regular contact with staff members of Vermont’s congressional delegations, both in Vermont and in Washington. He provides a family member’s perspective, and encourages their support for research. It’s the only way that the disease can be beat, he says.

“Alzheimer’s is 100% fatal, and it’s the 6th leading cause of death in the U.S. But cancer used to be like that, and look how far we’ve come from that. We need to get much closer to full funding for the research because when enough money is put in, science will find an answer.”

The work of advocates is paying off. The recently passed federal budget includes a historic $400 million increase for research into Alzheimer’s and dementia, bringing the federal allocation to $1.4 billion. “That’s still $600 million short of what the Alzheimer’s Association says it needs to fully fund research and treatment, but it’s a good start,” Backlund says.

And while he continues to work on large grant funding from the federal government, he’s also working on fundraising on a much smaller – but just as heartfelt – scale here at home. On June 24, he’s putting together his fourth Purple Pasta Make & Bake event at Burlington’s North Beach from 4-7 p.m.

“I learned about The Longest Day fundraising event through the Alzheimer’s Association. The idea is that 24 hours in a day is not enough for caregivers to meet the needs of their loved ones, and meet their own too,” he explained. The nationwide fundraiser gives everyone else a chance to help out by raising funds to make a difference in their own way.

For Backlund, it’s a way to honor his family traditions (his mother is Italian and he says they ate lots of pasta growing up) while building awareness and making new connections. “I first learned about it in 2014 and when I did a big dinner and invited my friends and family to make donations, it was the first way I got into public advocacy. I got such a big boost from all the support.”

He says they dye homemade pasta dough purple (the official color of Alzheimer’s awareness) with beet juice and food color, and “it’s just a fun event! I wanted to come up with an idea that anyone could take part in, maybe even people with dementia. The dough is fun to make and play with, and then we get to eat it too. And it’s just all by donation and to raise awareness.”

But it’s turned out to be even more than that. He remembers meeting a man last year, who happened upon the table where they were preparing and serving food. “A man just kind of randomly asked what we were doing there, and when I told him we were raising funds and awareness for Alzheimer’s, he shared that he had a family member who they suspected was showing symptoms of dementia. So I gave him information about who to contact for help,” he remembers.

He hopes that in the future, with enough investment in the research, both the stigma and the progression of the disease won’t have such a devastating effect. “Maybe people one day will be able to live with the disease, and they’ll never have the signs of dementia. That’s where the research seems to be headed.”

And in the meantime, Rob Backlund will be doing all he can to get there.

 


Rob’s Letter to the President

 

Dear Mr. President,

I do not remember if I sent you this letter. This memory lapse aside, we both know what it looks like to lose a parent to Alzheimer’s Disease. We both know how hopeless it feels to watch your hero slowly fade away at the virulence of this untreatable, unpreventable and incurable disease. We both know that no one-person deserves to suffer from Alzheimer’s, and yet, in this statement lies another reason why this disease is so horrific – no one-person alone suffers. Spouses, children, families, friends and communities alike ALL experience the ambiguous loss and the complicated grief caused by this disease.

My mother, Susan Backlund, has battled with younger-onset Alzheimer’s for the last eight years. She is sixty-five years old now, and she is in the late stages of the disease. She is incontinent, she has lost the ability to perform any of her own self-care, she cannot speak in full coherent sentences and she cannot recognize her husband and life partner of over forty-five years, Wayne Backlund (my Father) or her only child, me, anymore. And the honest and hopeless truth is that she will never regain any of these faculties, even though she may live for years to come.

My family is far from alone in this ongoing loss. Mr. President, you know this first hand, and so do the 200,000 plus families whom are facing younger-onset Alzheimer’s (those showing symptoms before the age of sixty-five). This number is just a fraction of the 5.4 million whom have the disease nationally. This number is projected to triple by 2050 and will cost an estimated 1 trillion dollars annually. Numbers aside, Alzheimer’s Disease is in a league of its own. There are truly no other diseases like it. It is 100% fatal – no one has ever survived. There is no known prevention. There is no known fool-proof treatment. There is still uncertainty about what causes and why the onset of the disease occurs. Presently, there is no hope.

In your inaugural address Mr. President, you stated that you wanted to “free the Earth from the miseries of disease(s).” Since you have taken office, you have moved forward on your campaign promises, putting words into actions, and for this I commend you. I write this now Mr. President, because in your inaugural words I hear great opportunity to continue cementing your legacy as a President of action and not just statements. Alzheimer’s is a disease that knows of no partisan aisle. It is a non-partisan issue that needs bi-partisan support. A cure for Alzheimer’s presently seems like a Mars
Shot, something far beyond our reach. However, I am writing with hope, because you are the leader who I believe has the brass to defeat this incurable disease.

Efforts to combat Alzheimer’s will not bring my Mother back and the same can be said for your Father. However, it might save my generation and the generations to come from having to say that Alzheimer’s Disease is part of their life story (like it is a part of ours). You see Mr. President, beating Alzheimer’s is something that generations from now people will never forget – because with a cure they truly will not be able to. I wish you only and all the best on your current journey. From my family to yours, we are sorry for your Alzheimer’s loss, as we know how difficult it is.

With the courage to continue to walk this talk,

Rob Backlund­­


 

Lisa B. Capp is a writer, activist and dementia caregiving survivor. She serves on the Alzheimer’s Association Leadership Board for the Desert Southwest, is a member of the Alzheimer’s Impact Movement (AIM) and AlzAuthors.
As a High Tech Change Consultant, Lisa worked with leaders of global business, governments and non-profit organizations around the globe. Her passion now is focused on empowering dementia caregivers to survive their journey with grace.  
Join Lisa in a conversation about grace on Twitter @lisabcapp and LinkedIn at LisaBCapp.