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Celebrating Father’s Day As My Dad Battles Late-Stage Alzheimer’s

Celebrating Father’s Day As My Dad Battles Late-Stage Alzheimer’s
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June 15, 2019
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Compared to Father’s Day five years ago, I am a little bit smarter. I am still just as happy and sad and I still laugh and cry, but I’ve been enriched from everything that I have learned about Alzheimer’s since my father Stephen was diagnosed with the disease in 2014.
 
I am a news anchor for NBC News and MSNBC and a long-distance caregiver for my dad. Almost every week for the past four years, I’ve traveled coast-to-coast, from New York to San Francisco, to be with my parents.
 
Alzheimer’s has taught me that while Father’s Day may be your day if you’re a father, it’s just as much my day, as a son, to show my love for my father and honor everything he has taught me. It’s a day for everyone in the family to show you care — fathers, sons, daughters, husbands, wives, sisters, brothers.
 
A New Reality
My father’s health has declined significantly in the past year.
 
Dad can no longer walk. Interestingly, I miss the days when he would run around the house, strip off his clothes, or put on clothes and then jump into the shower. It was a constant battle, like running around after a toddler. It was tiring, but I miss it.
 
When Dad was in the early stages of Alzheimer’s, he would communicate his pain by cutely saying, “It hurts, Rose.” Rose is my mom.
 
Dad can no longer talk. He hasn’t spoken for two months. I still monitor his behavior closely. I make sure he locks his eyes with mine and doesn't drift. On a recent visit, I wore a nice blazer. He kept wanting to touch it. He has always loved clothes. That day, he also waved his hand in a particular way that was just him being him, reminding me that the Dad I always knew is still there. These small moments mean a lot to me.
 
A year ago, when my family came to the difficult realization that we could no longer care for him at home, he was moved into an assisted living facility. We struggled with decisions we felt were right for my dad — like a stomach feeding tube. It was the big question, the big dilemma: Did we want to go this route? Some doctors told us it was extreme. Others said it was common. We had tried so many oral feeding regimens, but none of them gave him enough calories; at one point, he was down to 90 pounds. Then he developed a bed sore that made it difficult to sit up which is needed during feeding to reduce the probability he would regurgitate and get food in his lungs. The tough question was, do we feed him so he could gain weight and have the calories to help heal the bed sore, or do we not sit him up at all and try and let the sore heal? Bed sores often get infected and can cause demise. Our main battle became making sure he was fed. Yet he also had to sit up or would develop aspiration pneumonia.
 
These are difficult decisions, and difficult discussions.
 
Family Time
On Father’s Day, we gather, because that is all Dad ever wanted: family being together. Whether it’s a birthday or a wedding anniversary or any other reason to celebrate, we do. It was almost a rule in our house. "You must gather." We do it for Dad as much as we do it for ourselves.
 
During the past six months, I’ve had to rally and work very closely with my family in coping emotionally. We talk about death. Life. Sadness. Most families don’t talk about all of these things in a typical day, but we do. Were there times when two siblings weren’t talking to each other? Yes, but there were also times our bonds became stronger. Today, it’s a question of staying strong. We coordinate with each other. We help each other cope with this reality we have been facing together for so long. We enjoy each other. We even find moments of laughter despite what Alzheimer’s has done.
 
This "thing" that is Alzheimer’s has taught me to be a better, smarter person. One who strives to make a difference. I am not a scientist, but I can contribute by bringing awareness to this disease, empowering fellow caregivers and helping people tell their stories.

My dad is still being a father to my siblings and me. He is guiding us in ways we did not know he could. Though he cannot talk, he speaks to us. I will never stop fighting for him. Never. And I will never stop fighting for those who walk beside my father in their battle with Alzheimer's.
 
Happy Father’s Day, Dad.

About Richard: Richard Lui has had an illustrious career that has included roles in marketing, strategy and technology. Today Richard is a journalist and news anchor for MSNBC and NBC News and is known for his humanitarian charity work. He is an Alzheimer’s Association Celebrity Champion.
 

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