On Dementia

September 13, 2017

“Your dad wandered off 30 minutes ago, and I haven’t seen him since.”

This is not what you want to hear when you arrive at New York Penn Station to greet your aunt and your father. Certainly not when your father suffers from dementia, and certainly not when you’re in a place that 650,000 travelers pass through each day. Not when you know the sacrifice it was for your aunt to travel via train for eight+ hours to bring your dad to NYC. Also not when you have a rambunctious two-year-old in tow, who’s been eagerly anticipating seeing “Grandpa.”I spent the next hour anxiously scanning crowds with my eyes and silently saying constant prayers that my dad would turn up. The police looked too. When Jordan arrived after racing downtown and could take over watching Jameson, I was free to walk outside the station and look around. I realized it’s hard to fully appreciate just how many people fill NYC streets until you’re trying to locate just one.

I walked and scanned. Walked and scanned. Trying to imagine where his thoughts, which I don’t fully understand, could have taken him.

I rounded the block, weaving out of the way of a group of tourists posing for a photo. I walked and scanned. And there on a bench, sitting by himself, I spotted my dad.


I threw my arms around his neck and told him how glad I was that I’d found him. (I’m telling you, I have a newfound appreciation for the story of the prodigal son’s return home). And he was glad to be found too. He said he’d tried to call us, but it didn’t go through. When I looked down, he was holding his tv remote, which he’d taken from his assisted living facility, and he’d mistaken it for his cell phone.

This is dementia.

I’ve written before about this new normal that I find myself in with my dad, and quite honestly, it’s a rollercoaster. He has moments of great clarity, where his wit and humor and his old self shines through. When he’s with us, he has moments of great joy, watching Jameson do the most mundane thing or enjoying a meal I prepared for him. But there are also moments of confusion, of recounting stories that we know aren’t true, of seeing people in the room who aren’t there.In most moments, it’s little help or encouragement to point out to him how the things he believes are true are not. But in other moments, there are tough conversations that must be had about what he can and cannot do. Dementia is a difficult thing in that the person with it often isn’t aware of their illness. Not like a person with cancer feels their sickness and can therefore be made aware of/agree to their limitations. In my father’s mind, he’s fine, which makes taking care of him that much harder.And perhaps the hardest part of having a loved one with dementia is having to grieve the loss of a person who is still alive. Of course, we make the very best of the moments we have, and I cherish the clear ones where he is remembering and laughing and charming with everything I have. But I’m also left knowing that the long conversations we used to have are behind us. Me asking him for his thoughts on the things going on in my life are behind us. His ability to live fully independent are behind us.

And for all of my struggles, I can only imagine how incredibly difficult it all is for him.What does remain is our confidence in our love for one another. That we both want to do what’s best for the other person — he in not wanting to burden my family (which breaks my heart) and me in wanting to make sure he’s safe and well-cared for. And a mutual love for the moments we do get together, whether clear, confused, or somewhere in between.

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  • Reply
    Shonita Roy
    September 13, 2017 at 1:00 pm

    This is beautiful. My Grandmother is also going through Dementia seemingly in its hardest state. Praying for your strength and for your Dad.

  • Reply
    Kathy Randall
    September 13, 2017 at 1:50 pm

    I did not know your dad was having such a difficult time. My heart and prayers are with him and your family. Jim was and is an incredible and charming man! I have such fond memories of our holidays at the Collins shared with you, your mom, Kareem and Jim. I know how hard dementia can be on everyone, but it sounds like you are doing the best things for him and you. 💕

  • Reply
    September 13, 2017 at 1:53 pm

    My dear friend, praying for you and for Dad and thanking the Lord for Jamie getting these sweet moments.

  • Reply
    Malia Cobb
    September 13, 2017 at 4:12 pm

    Sweet Jess , I can only imagine how hard his arrival was. I’m so glad he was found and could spend time visiting you all. and what a darling photo of you three at the end! Thank you for sharing your heart with us!

  • Reply
    Charlie Bernier
    September 13, 2017 at 4:14 pm

    Jessica, thank you for sharing your story.
    I, like you, can always remember the good times…..just this past weekend we had our annual Block Party and I was remininscing how your Dad and Kareem would “shoot hoops”with me late at night talking/debating sports.
    You and Dad are always in my thoughts and prayers.
    P.S. I also shared photos via FB of your beautiful family!

  • Reply
    September 13, 2017 at 10:03 pm

    Your dad is so blessed to have such a loving and caring daughter; thank God you were able to find him! And I love the way he looks at Jameson; they have a beautiful grandfather/grandson bond.

  • Reply
    Raushanah Rodgers
    September 14, 2017 at 8:47 am

    Thank you for sharing. The journey of life continuously introduces us to new hands to play and navigate. While the hands may be difficult at times–the resulting growth is unique, earned and a prerequisite for a future experience, project or task.

  • Reply
    Betty Tomlinson
    September 15, 2017 at 4:49 am

    I have always known you strength is rooted in the Lord Jess. I pray for the Jim I knew then and the Jim I know now. I also pray that Jamie will always have sweet memories of Grandpa. I know that it’s hard but that is why God chose you as the recorder of his life for us all to remember the man, as he was. Love your spirit, your ability to stay strong and your unbridled belief in God. Love you Sweetheart.

  • Reply
    Lynn Harris
    September 16, 2017 at 12:39 pm

    Dearest Jessica, what a beautiful post. I have travelled the journey you are on with my dad–a cousin you never met–Guy T. Garrett, Jr.

    My first loss occurred when the smartest man I had ever known was no longer able to share his wisdom –or his signature laugh–with me. That was the birth of “New Daddy.” I cherished my moments with him, meeting him wherever he was. And, when Daddy passed, I grieved for both Pop and New Daddy. I thank God every day for both of them, miss both of them EVERY day and support Alzheimer’s research in their honor, hoping for a cure. #walktoendAlz

  • Reply
    September 16, 2017 at 9:36 pm

    It’s always heartbreaking to witness something like this first hand. But your dad is so lucky to have you and other family members around to make the world just a little bit less confusing and difficult for him. Praying for your strength and peace.

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