Rewriting Life Plans When Your Dad Has Alzheimer’s

Below is a message from Jennifer Costello, YPAA Secretary…
 
When I first starting telling friends that my dad has Alzheimer’s, I would often hear the standard response of “my grandparent has it too.”  Alzheimer’s is all too familiar in the elderly community.  But my dad was not elderly when he was diagnosed with early on-set Alzheimer’s Disease.  In fact, my dad was still working more than full-time and was even helping to take care of his own father who suffered from Alzheimer’s when we recognized something was wrong.
 
Like any bad news, hearing your father has Alzheimer’s is life changing. But being a young adult child, the bad news meant I had to completely rewrite my life plans. In a time of my life where life should be exciting as I establish my own life with my own house, a career, and a husband, I had to change my priorities and be a support system for my mom and take the time to help care for him.

I got engaged in December 2013 to a man who reminds me of my dad: strong, supportive, hard working; the kind of man who cleans the snow off your car before you even get out of the shower. But the joy was overcast by heavy sorrow. Like most girls, I had always dreamed of having my dad walk me down the aisle, give me away to my husband, and share in the father-daughter dance at our reception. While my dad is still physically here, the person that I know was and is so quickly going away. The look in his striking blur eyes is now blank and he is no longer strong, supportive, hard working, nor can he clean the snow off of my moms car anymore.

We had to act fast and plan fast. We were able to plan our wedding for November 2014. I pick up my dad from senior day care at least once a week, and each day I picked him up, I saw less and less of then dad I knew. Each day as the wedding approached, I had to accept the fact that on the day of our wedding, there was a possibility that he may or may not be able to walk me down the aisle, give me away, or join in our father-daughter dance. It was a reality that I had to face.

Because of our quick wedding planning, strong extended family support, and patient, kind wedding coordinators and vendors, we made it down the aisle and even shared our father-daughter dance. He may not have been fully aware of what was going on, but he knew it was a special day for me. I am so grateful for these memories that I was able to make with my dad.

I joined the YPAA because I hope for a day when no little girl will have to question whether her father will not just physically make it down the aisle on her big day, but also mentally and emotionally. At the YPAA, I have made wonderfully supportive connections and friends for life. We work hard raising not just money for the cause, but awareness of Alzheimer’s. I hope that we can show the world that Alzheimer’s Disease doesn’t just affect the elderly, but it affects everyone of all ages who have to change their lives in support of loved ones suffering with the disease.

Alzheimer’s Affects All Ages

Below is a message from former YPAA Chair, Leland Strott.

Alzheimer’s Disease is not just an old person’s issue – it affects the people who become caregivers, family, friends, and all the people who care about them, young or old. My grandmother didn’t display signs of Alzheimer’s until after my grandfather passed away. In the four years that followed, my family and I witnessed her fading memory – names, places, and faces all drifted away. We continued to visit and bring pictures and share stories, and we remembered her through our own stories and memories.

For those people who are affected, having a person or a group of people to talk to about their experiences makes a huge difference. That’s why I was thankful to be part of Young Professionals for Alzheimer’s Awareness when our group first started. I’m thankful to have other young professionals, people who are facing similar experiences, to share my stories, memories, and struggles with.

My grandmother has since passed, but I’m still involved with YPAA. What makes YPAA great, aside from having a resource of other young professionals to share experiences with, is knowing that our activities are helping to make a difference in Alzheimer’s awareness and research. The events we put on help raise awareness and break the stigma that it’s just a disease for old people.

I look forward to the growth of YPAA, and seeing what we’re able to do to spread awareness about Alzheimer’s among younger generations.

Alzheimer’s and Young Professionals

Below is a message from former YPAA Chair, Jerome Davidovich.

I am a firm believer that the awareness of Alzheimer’s Disease needs to be driven into the younger demographics of our society. While this disease has developed the moniker of “the Old Persons Disease”, it is effecting people at an ever younger age and people must be aware of the basic facts of the disease and what resources are available to both those with the disease, and the families.

I was a junior in high school when my grandmother (Baba Vera) was diagnosed with Alzheimer’s Disease. A brief description of my Baba—she was an out-going loving woman. Her home was always open to members of the community for support and friendship. She had a burning fire that allowed her to not be afraid to voice her opinion and fight fervently for what she believed in. She was the one that everyone knew, loved and feared.

When I found out about her diagnosis, I had never heard of this disease and was confused about the scope of it for some time. I didn’t know where to turn for information, aside from the Internet, and felt that this was an uncommon situation for folks my age, so I did not speak about it with friends. After high school, I moved cross-country to go to college and would come home once or twice a year for winter and summer breaks. While I didn’t experience the day-to-day stresses of caregiving for someone with Alzheimer’s, I did see drastic changes in her day-to-day functions.

However, even with these large changes, I refused to fully accept the fact that once this disease takes hold, it does not release its grip—in fact it squeezes tighter. Part of the reasoning behind my stubbornness to accept this disease was the fact that whenever I would come home after 6 or more months, my Baba would recognize me immediately and the conversations would go on as if nothing changed. There was one moment that forced me to accept this fact, and it was a crushing blow.

I had decided to surprise my family with a trip home for Thanksgiving one year. After ringing the doorbell, my grandmother answered the door with a blank look on her face, followed by “May I help you?” I was forced, at this moment, to accept the fact that my Baba was declining, and would continue to decline further away from the Baba that I knew and loved. Being so far away, I felt helpless and didn’t have anywhere to turn.

A few years later she had declined to a point that required she be moved to a nursing home that could provide better care. While she was receiving very good care, each visit became harder and harder because I could see her mind and body continue to deteriorate. It would decline rapidly, to the point that she was with us in body, but not in spirit.

Baba suffered with the disease for 12 years, before passing away in October of 2011.

I had brought up the topic of Alzheimer’s a couple of times with friends and while most of them had heard of it, they didn’t fully understand the disease. I did however find a few people that knew others suffering with the disease and they shared this feeling of helplessness. Through these conversations, I realized that we couldn’t accept the helpless feeling towards the disease and needed to do something.

My wife Amy and I reached out to the Alzheimer’s Association and they put us in contact with this brand new young professionals group that was forming called AlzTogether. This group has done, and continues to do, great things for the cause. While with this group, I was able to meet and witness both incredible and heart wrenching stories of exactly how much this disease has affected the younger demographics of our society.

At the time of my Baba’s death, we had recently moved to the Baltimore area and realized that there was not a group for young professionals in the area. With my Baba’s fire in my heart, I was determined to create a similar group in the Baltimore area with the sole purpose of raising awareness of the disease and provide a resource for people affected to come and know that they are not alone.

With this, and a lot of other great people, the Young Professionals for Alzheimer’s Awareness (YPAA) was born. In the past 2 years we have held social events, raised funds for the Walk to End Alzheimer’s, and participated in the Alzheimer’s Association national Advocacy Forum where we met with members of Congress and the Senate to help push for change. I have met truly extraordinary individuals that are experiencing this brutal disease first hand and others are contributing to the disease through research, advocacy, and care.

As we look to the upcoming year, I see great things continuing to happen for the group and many more people to reach. I ask that we all do what we can to help with spreading awareness of this disease. I look forward to the upcoming events and meeting all of you at those events.

Welcome to the New YPAA Website!

Welcome to the brand new online home for Young Professionals for Alzheimer’s Awareness. We’re a group of young adults in the Baltimore, Maryland, region who come together to plan events and spread awareness about Alzheimer’s Disease.

This website will soon be populated with upcoming events, the latest news and research about Alzheimer’s Disease, and everything you need to know about YPAA.

We’ve got a big year coming up in 2014. If you’re a young adult (between 21 and 40) in the greater Baltimore area and want to get involved, contact us! What could be better than networking, making new friends, and raising awareness for an important disease, all at the same time?

Until next time!

#EndAlz