Monday, July 15, 2019

Alzheimer's Sucks!

I lost my cool when I was visiting my parents over Christmas. It was after 11 pm and when I went into my room to get ready for bed all my dirty clothes were gone. My mom had folded them and put them away in my dad’s dresser. “Mom, you really messed up. I just wanted to go to bed and now I have to deal with this.” She immediately started trying to fix the mess she’d caused. She grabbed random objects asking, “Is this what you’re looking for?” which easily could have been sweet, but just ticked me off. My mom had no idea what was going on, but she knew I was mad and she knew it was her fault. She looked so sad and my dad just hugged her and said, “Ginny, I love you so much. You are so kind and you didn’t do anything wrong.” I felt like garbage. 

I calmed down, sat at the dining room table, and read 1 Corinthians 13: “Charity suffereth long, and is kind… is not easily provoked.” I hadn’t been kind and I had most definitely been easily provoked. The next morning I apologized to my mother for being unkind and she had no clue what I was talking about. She just told me she loved me. It then occurred to me that I could measure my integrity by the way I treat someone who would have no memory of how I treat her. 

I made a commitment that I wouldn’t be unkind to my mom again, that I would be as patient as I previously thought I was. I spent two weeks at home in May and I did an excellent job (if I do say so myself). The two weeks I was home in July were a little harder. She kept taking my stuff and “putting things away.” Even some of the stuff I hid she found. It was a losing battle that I just gave up on. She’d come into my room wearing my clothes and I’d say, “Oh mom, that’s my shirt.” She’d then change, hand me the shirt she’d just been wearing while wearing a different shirt of mine. I mean, I don’t blame her. I have some rad t-shirts. But it was still maddening. And I’d say to myself, “Be kind, she doesn’t know what she’s doing. It’s just a shirt.”

My mom loves to help so much so I’d give her any tasks she can still do. I asked her to fold my laundry last week (which had been washed this time) and she was thrilled to help. She then dumped it all on the dirty floor. I said, “Mom, why’d you put my clothes on the floor?” And immediately I had the thought, “What’s more important? Your clothes or your mom’s feelings?” I then self-corrected and said, “Thank you so much for folding my laundry, mom. You’re so kind and helpful.” She smiled and said the most genuine “you’re welcome” a human being could utter. 

I’m sure most parents have learned this lesson years ago, but I’m just learning that feelings are more important than my stuff. I told myself this a lot whenever I would start to get frustrated. “Mom’s feelings are more important than your clothes, Ben.” 

When my mom was diagnosed with Alzheimer’s on September 1, 2016 I started to wrap my head around the reality that she would forget me and that we would have the same conversations over and over again. And for some reason I knew I could handle those moments. What I was completely unprepared for was that she would lose her ability to make any sense. The way my mom talks now is like if you repeatedly press the predictive text button on your phone. All the words will run together and flow, but they make no sense. That’s how my mom talks. I generally have no idea what she’s talking about because she uses so many pronouns without ever giving the antecedent. 

On the 4thof July my mom mentioned wanting to do something so we went on a walk. Since we had just been on a trip to the beach I decided to talk about future trips while we walked. “Where would you like to go on our next trip?” Gibberish. “If you could see any place, what would you like to see?” More gibberish. “What places would you like to visit?” Completely unintelligible response. I almost began to cry right there on the sidewalk realizing that my mom, though present, was unable to have a conversation with me about vacations. 

I pulled out my earbuds and put one in each of our ears and I played John Denver’s “Country Roads” because my mom loves that song so much. As usual, she tried to sing along, but mostly just mumbled with a huge smile on her face. I love that song now, too, because it says Virginia (my mom’s name) and momma (no need to explain that word). I played some more songs and she would make comments, laugh a lot, and we did a bit of dancing as we walked down the street. When we got back to the car she said, “Already? I want to keep going.” She just really loves being with me even though she can’t explain where she wants to go on vacation.

I’ve come out to her a number of times because I think it’s fun. But it also makes me nervous because I don’t know how she’ll react. “Mom, I’m gay.” “You’re… gay…,” she says the words slowly trying to understand them. “What do you think about that?” I ask. “Well, as long as you’re happy and you get to do the things you like to do.” That’s what she always says, “Do the things you like to do.” She just wants everyone to be happy and do the things they like to do. “How was your day, mom?” “Well, it was a lot of fun. I just did the things I like to do.” 

A few days ago we were on a walk at the marina. Since she’s not so good at answering questions I’ve started to just tell her things about her life and she’s always so delighted. 
“Mom, did you know I’m your son?”
“Really?! My son?”
“Yep, you actually have four kids. I’m your baby and your favorite.” (If there’s one thing I’ll go to hell for it’ll be constantly messing with my mother and tricking her into saying that I’m her favorite child. I’ve only done it a few dozen times.)
“I didn’t know I have children. Wow!”

A few minutes later we’re back in the car. As I drive she puts her hand on my arm and says, “Thank you for telling me what you told me. I didn’t know. I’m just so lucky to have you. You are so nice and so kind to me and just an amazing guy. You are a great son and there’s no one better.” That’s Ginny Schilaty. The most affirming woman in the world. Alzheimer’s has taken so much from her, but it hasn’t taken that. 

Now I’m back in Utah with a mix of emotions. So happy to get back to regular life. Missing my parents and wishing I was home to help out more. But also relieved that I don’t have to. And I feel guilty that I feel relieved. But I know exactly what my mom would say if I told her that. “Don’t feel guilty, Ben. You are such a good son. Just go and live your life and don't worry about us. We’ll be fine. Do the things you want to do.” 


Unknown said...

Ben, I am sitting here at my office desk trying to hold back tears. I love your mom and dad and feel blessed that I am able to call them both friends. I can't tell you how much your post touched me. Your mother's kindness and concern for EVERYONE around is something that I witnessed first hand when she was the Relief Society President as well as when she was just being Ginny. I am saddened to know that you and your family are asked to go through this trial. I am saddened to know that your father is asked to watch his sweetheart go through this. But, I say with all confidence and conviction that if you are anything like your father then you will make it through this. Faith, kindness and long-suffering are just some of the things I learned from your mother and father and I will say a prayer now that those things will carry you and your family on the hard days. I wish I was able to get to know you during my time in Everett, your post speaks to a person that is trying to do the right thing and willing to adjust themselves where needed. Please give your dad and mom my love and know that I will continue to pray for you all.

stillclueless said...

This sharing with us is better than beautiful. I went through similar experiences with my mother who died of a rapidly progressing brain tumor - similar symptoms although decidedly different causes. I’m going to suggest that you may not be having meaningful conversations with her, but she is having meaningful conversations with you; her gibberish makes perfect sense to her, I bet. I love that you told her you are the favorite! I did that, too. I don’t know if my mom understood or if she just picked up on my expression, but when I assured her I was the favorite, she laughed and laughed. I’m so glad your mother feels your love and that she’s happy!! Both of you look too young to be dealing with this. God bless you for sharing. I can hardly wait for the next post.

Just Call Me Doug said...

Thank you for sharing this blog. This is amazing. I am LDS but my partner is a Messianic Jew. His mom is in a nursing home but it's not a good fit - his mom has been combative and refuses to take her meds, and the nurses seem to be avoiding her at all costs because she is so difficult. She really is unhappy there. The main thing that my partner had a problem with was his mother would remember his cousin who lived with her for 20 years (who passed away from cancer last year) and talk about her like she was her daughter yet he could never get her to acknowledge their relationship other than she was his biological mother. Every day she would ask for his cousin and ask where she was. She was a difficult individual before she had Alzheimer's, but I can relate to what Ben is going through. His mom still has intelligent conversation, but when we visited her last she was on her tangent of "When can I get the heck out of here?" no matter how we tried to steer the conversation. It has been a challenge to be loving and slow to anger for him at times because she blames him for things and never apologizes when she's wrong. I am encouraged by reading your blog in the way I should treat my partner's mother. My grandmother had Alzheimer's, but I was never around her and Mom said she was never aggressive like my partner's mother is. Like you, I have learned to love her as they are, even in the most difficult and trying times. I think of my grandmother when I interact with his mom, and i try to remember - would I act this way in front of Grandma? No, I would not. Is the Lord still watching? Yes. It is definitely harder to love someone who swears like a sailor when they're angry, but I can do all things in Christ who will strengthen me!

CWH inc said...

Ben I am Donald. I am not Gay, a Presbyterian by affiliation via my wife Jeanne. Jeanne has Alzheimer's disease also. Your story touch me so much that I couldn't finish reading it the first time. One of my old high school friends, David (also LDS), posted your story and that is how I came into contact with it. Even though I am probably old enough to be your Grandfather, I truly identified with what you typed. Prior to having to move Jeanne to a nursing facility this past January, after many years of taking care of her at home, I had become so impatient that I now am so very ashamed. I felt so guilty about having to admit her to a care home. I was also probably in a great deal of denial about her illness and my final lack of ability to continue to care for her. I don't know what I would have done without the support of my church family and good friends. Alzheimer's has attack many people in my circle of loved ones. My grandmother Dot, Jeanne's mother Ruth, my Mom Jerrye, Jeanne's aunt Merle, and our dearest friend Jerry. So I was no stranger to this THING! I thought I could handle it appropriately. What a failure I felt that I had been. I and Jerry's wife Dani, one of my most cherished friends went to visit Jeanne today. We took her a Strawberry malt which she loves and slurps down quickly. Just watching those two who are closest friends was so enlightening to me and made me realize that I had not been a failure at all. Reading your story has helped with that conclusion also. I realized that this comment is long and may even be inappropriate but I am here to confirm that you and I are good people. I have many LDS friends and have always admired their commitment to family values and to living their beliefs. One of my LDS friends also has a gay son whom I watched grow up, become an Eagle Scout, and even though I haven't had contact with him for many years, because of his up bringing, I know he is okay in his relationship with his mate. For some reason this has lightened my heart and I thank you for that. May God continue to bless you and your family.

Unknown said...

I so love Ginny. We used to have so many laughs and fun times. When i still lived there she was slipping and the few times since she has remembered who i was. Im so sorry that such an intelligent, life loving person as Ginny is has such a horrible disease. I have other friends with Alzheimers and i know that the one thing they all want and need is our love even when the time comes when they don't know who we are. God bless you Ben for loving your mom