A few years ago my dear friend Jess let me cover her beyond words wedding on our blog. This wedding was magical, full of love and laughter and amazing food. The part of the day that stood out for me the most though was when her father who has been ailing from Alzheimers for the past decade walked her down the isle. In what I'm sure had been a bit of a scary moment here was my beautiful friend walking down the isle with her dad and he was just all smiles, I couldn't help but snap the picture above. I asked Jess if she would share with us a little bit of what her father has gone through these past few years. In her own beautiful words here is the story of Jess and her father and the memories that are now a part of their family history.
When did you find out your father has Alzheimer’s?
He was diagnosed February 2004. He was 60. I was just about to turn 17. According to my mom, he was showing signs of the disease years before his actual diagnosis—forgetting about plans to visit a friend that weekend, making errors on work projects—but they thought it was all due to stress. Eventually these things were happening more frequently so he went to see his doctor. It took awhile to get a conclusive diagnosis since he was so young for Alzheimer's (anything before age 65 is considered early-onset), so they first ruled out a bunch of other medical conditions.
What was his initial reaction to being diagnosed? What was yours?
From the start, my dad was in denial. People with Alzheimer's typically don't have much insight into their condition. This made things especially hard because he thought we were taking away his independence for no reason. Imagine being 20 years old and having to tell your dad that he shouldn't be driving and having to hide his car keys from him. You know it's the right thing to do, but he doesn't. You know he isn't the same, but he doesn't and you don't want to remind him of that. I don't remember having a strong reaction to his diagnosis (I actually don't even recall the "family talk" we had in which the news was broken to me and my brother), maybe because I was young and still thought my parents were indestructible, or maybe because I had never heard of Alzheimer's disease before. When most people think of Alzheimer's, they think of memory. That's what most doctors focus on when they discuss the diagnosis as well: a loss of memory. A few years ago, I talked to my mom about how she was given the diagnosis. She remembers thinking, "Ok, his memory will be bad. He'll forget some things like he has been recently. We can deal with that." When you think of it that way, it's not so bad. But that's not true. It's hard to have a strong reaction to something when you're not aware of what it really means.
When did your family make the decision it might be best for him to be taken care of professionally?
My mom was caring for him by herself after I moved to Cleveland for grad school. It got very hard for her. My dad was to the point that you had to watch him ALL THE TIME. During a trip to Peru with my mom, he walked out of the house and got in a taxi and left. My mom went after him when she heard the front door open, but by the time she reached the door he was gone. He was lost for 2 nights and 3 days. THE WORST. He was eventually found about 10 miles away, trying to get into someone else's house (that he thought was his). At that point we became concerned for his safety. He also lost his ability to speak English so it lead to a lot of miscommunication at the adult day center where he spent his weekdays. We're fortunate that there is a nice place in Peru that is perfect for him right now. It's a nice big homey house where they play the music he likes and take him on walks throughout the gates neighborhood. The quality of care is better, and we can afford to hire his own personal nurse (nursing homes in the US are crazy expensive and we would definitely not be able to afford his own nurse here). The drawback is that I can only visit him twice a year. I have to constantly remind myself that he's in the best possible place right now and I need to focus on him and his needs, rather than me and my wants.
What has been the hardest aspect of his disease for you?
Oh man, it's hard to think of THE hardest aspect. There's constant deterioration so each stage comes with its own challenges. In general, I'd say it's not being able to have a father-daughter relationship with my dad anymore. There's some major role reversal that happens with Alzheimer's and I wish that didn't happen when I was so young. I can't pick up the phone to call my dad for advice. I was afraid he'd be too confused and wouldn't want to walk my down the aisle at my wedding (I'm SO happy he did!). I'm sad my future kids won't know how amazingly cool their grandfather was (he would have been the best). There's also small things I can think off... like the time he straight up got out of my car while I was driving because he was mad at me for seemingly no reason. Or the time he brought in our neighbors' trash (last night's Chinese food) and laid it out on the table. Or when he told me he didn't think I was his daughter. Or the times he'd get upset at my brother and kick him out of his room because he thought he was a strange man in our house. Or when he left the adult day center, walked onto the highway, and crossed 8 lanes of traffic (I got a call from a cop who watched the entire thing, picked my dad up, and was smart enough to contact me...unlike the adult day center who, when I told them what had happened, said, "Oh, ok." Never took him back there again). Now, it's not being able to have conversations with him on the phone. Sometimes he sings "Jingle Bells" with me. Sometimes he'll repeat "I love you." But most of the time he doesn't say anything and I'm not even sure if he's hearing what I'm saying.
What was the best moment with him since?
Anytime I feel like we have some sort of connection is the best time. If, when I visit him, he wants to sit by me and hold my hand. Or he gets tears in his eyes because he recognizes me. He also has this funny personality that makes me feel like he's still "in there." Last time I went to Peru I bought us both ice cream. He ate his pretty fast so I offered him a bite from mine. He ended up taking the biggest bite and finishing it all and grinning about it. I like when he does things like that with purpose to be funny.
What is it like now after it’s been sometime? How does he react when he sees you now?
For the most part, he still recognizes me. I don't think he knows I'm his daughter (that's no longer an understandable concept to him) and he wouldn't be able to spontaneously say my name (he calls everyone the equivalent of "sweetheart" in Spanish). But I think he knows I'm someone special to him, so he treats me differently than any other person. There's only been one time when, during my first day to visit him, he saw me and then kept walking. There was no recognition and I thought, "Shit. This is it." But the next day and everyday after that was good. That day is coming though.