Wendy DeLucca, an incredible supporter of the Alzheimer’s Association, graciously agreed to discuss with us some of the trials, tribulations, and moments of joy that come with losing a loved and beginning to heal.
Alzheimer’s Association (A): So, we’ve heard that you have a Walk to End Alzheimer’s team titled “Wendy’s Walkers;” is this your first time participating in the fundraiser?
Wendy (W): No, I started the team in the fall of 2008. Every year the team has gotten bigger and raised more money.
A: What has been your fondest memory of the walk?
W: There are two things I can think of. The first is always at the walk itself. While there, I always run into people I know, but did not know had a connection themselves to the disease. And I always find that to be pretty powerful.
The second moment is two years ago when I had done a really large fundraiser for the team. By doing the fundraiser I was able to say to the people that I truly felt like I was honoring my mother’s memory. It really gives you a sense that you are actively participating in something to honor someone’s name. It feels empowering to have a lot of people involved in that goal. It is one thing to receive a donation, but it’s entirely different to have 50 people in one room supporting you. It’s just a heavier feeling.
A: What encouraged you to begin participating in the Walk to end Alzheimer’s?
W: My mother, who had Frontal Temporal diagnosis. I began walking the same year we had to place her in a nursing home.
A: What is the fondest memory you have of your mother?
W: Our long phone calls. My mom was someone that I could always call, I could always talk to her and ironically her speech was one of the first things to go. There are so many times that I still wish I could pick up the phone to call her. For so many of the little things and the big things, I wish I could call her.
A: What is one of the more challenging aspects of caring for a person with Alzheimer’s disease?
W: One challenge that I faced and that I often see other people face is finding patience with the person. The person will sometimes do things that are so out of the norm for an adult and you get upset or lose your patience.
A: Would you offer someone else who might be in the same place you once were any advice?
W: Reach out for help. I had a really difficult time convincing my father that he needed help and, finally, I think he felt he might explode if he didn’t get help. I wish more people could see early on that you cannot do it all alone.
I got some help early on, but I would suggest doing more. I would suggest trying out different support groups, using the helpline, depending on how early on things are, always get different opinions.
As hard as it is, at the beginning you should start reading about what issues might arise in the later stages. Reading can help prepare you for decisions regarding medical, caregivers, legal aspects, and more. Reach out for help and do your research.
A: Had you heard about the Alzheimer’s Association and the resources it has to offer prior to your mother’s diagnosis?
W: I don’t think so; I know that it definitely wasn’t on my radar. Surprisingly, I had a grandmother who had Alzheimer’s, but I still hadn’t heard of the Associations. However, I think I might have discovered it by picking up a flyer or researching links online.
Once I learned about the resources available, the first thing I used was the 24 hour helpline. Through the helpline I would request more resources. Originally I started out in a support group that was more directed towards spouses, but I wish I had tried others. I was working to try and help my dad, and I was very confused about how quickly my mother’s disease was spiraling out of control, so in retrospect I wish I had done more. Instead I got more involved in the walk and raising money for my team.
In time, I spoke to Maria Tomasetti and I had done a few volunteers things and I went to a training session so that I could lead a support group. There is some comfort in talking to people who know exactly what you are going through. It’s a little different than talking to a friend who can only listen.
A: What do you wish more people understood about the disease?
W: I wish there was a better understanding of the basics of dementia. Dementia is the umbrella term and there are many different types of dementia, but there is also a misconception that this is only an elderly person’s disease.
Understand the basics, breast cancer is one type of cancer, Alzheimer’s is one type of dementia and it’s not just memory loss. If people notice and are aware of other behavioral or personality changes it may be another type of dementia.
A: What motivates you to turn such an awful disease into something as amazing as Team Wendy’s Walkers?
W: My mother is the main source of motivation. What our family went through, to me, reflects all of the other thousands of families that are going through this. The day to day angst that arise, the phone calls in the middle of night from my father unsure of how to handle uncharacteristically erratic behaviors, watching her go from my mom, and independent adult, to a helpless frail person. Seeing all of that and wanting to help other families and wanting to see more money put into research is all the motivation I’ll ever need. There is a lot of money needed to bring the research where it needs to be.
A: Is there anything else you might want readers to know?
W: I would encourage other people who are touched by this to try to find, even within their busy lives, a little bit of time to reach out to others. There are a lot of times you overhear something or maybe see something on Facebook about a friend of a friend. I would like to see people who are affected by this disease feel like a community. Even if it’s a stranger, offer a listening ear. That is my wish for a lot of things in life, a community around shared experiences.
Contributor: Cailinn O’Callaghan, Student Intern, Summer 2014