Sunday, May 15, 2022

She Doesn’t Dance Anymore


Alzheimer’s destroys a person slowly. The brain gradually builds up plaque and stops working little by little. It’s hard to notice the change when you’re around the person every day. But you notice when you’ve been away. Before this visit I hadn’t seen my mom for more than four months. I noticed the change.

I think the clearest memories of my mom with dementia will be from 2020. I spent a total of four months staying at my parents’ house that year. That time really was a gift. My mom was so thrilled to do literally anything with me so we went on walks, took long drives, read books, watched shows and explored lots of corners of western Washington. She watched three entire seasons of Stranger Things with meNot a show that Ginny Schilaty with a fully functioning brain would have liked. When an episode would end, she’d say, “Wanna watch another one?” And I’d say, “I guess we should.” 

 

My mom has been so active which has caused a lot of trouble. She’s always “cleaning” or “putting things away” which mostly just causes chaos. But in her mind she’s helping. During the months I spent at home in 2020 I spent a lot of time reading to her because it kept her from “cleaning” and gave my dad a break. She’d sit and listen for quite a while even though she had no idea what the books were about. Sometimes I even read to her in Spanish (a language that she is zero percent fluent in). I tried to read with a lot of inflection to keep her interest and every page or so I’d ask her what she thought. She would then mutter a bunch of random words strung together and then when she was done I’d say, “I think you’re exactly right,” and then get back to reading. 


I definitely can be selfish and impatient so during her nonsensical jabbering sometimes I’d text someone or read silently on my phone hoping she wouldn’t notice. One time I was doing this and paying zero attention to what she was saying and then she finished her thought, “So you really could make quite a bit of money.” If only I’d been listening. 

 

My mom loves being at our house and when we were away on outings, she’d often ask to come home. As a way to distract her, my brother, nieces, and I would start dancing. She’d join in the fun and for a few minutes forget she wanted to go home. Then when she brought it up again, we’d start dancing and she’d laugh and dance and forget about going home. It became a thing we’d do all the time. 

 

In February 2021 she was moved to a memory care unit. My dad had been her primary caregiver for five years. Most husbands only last a few months. I visited her a few times that year at her new home. We went on walks and played catch and I read to her on the rocking chairs on the porch. When she’d see me, she’d light up and give me a big hug. 

 

This visit has been different. If I were to describe my mom now the main word that comes to my mind is vacant. She’s there, but barely. When she saw me for the first time in four months this past Sunday, she gave me a hug, kissed my chest, and said, “I live you” (not a typo). I asked her questions and tried to talk to her, but she was just so vacant. I’ve been back a few times this week and one day she was more present, but mostly she was just there and yet not really there. 

 

I tried to read to her. Before she would nod her head along like she was listening. This time she just stared off into the distance. Before she would sit and listen for a long time. This time after about 30 seconds she started to stand up to leave. “Mom, can you sit down please?” She didn’t sit down. “Mom, I need you to sit down.” And then I tugged on her hand and she sat down. This happened about 15 times. 

 

When we went on a walk, she pointed out our car out of the dozen or so in the parking lot and said, “That’s my shar.” Strange that she remembers her car. I tried to get her to dance like before. She smiled but didn’t get the game. That day a friend asked me how my mom was doing. “She doesn’t dance anymore,” I said. 

 

This week I posted some pictures on social media of visiting my mom. A selfie with her on Mothers’ Day, her holding hands with my dad, us going on walk. But what doesn’t come through well in those stories are the serious conversations we’re having. Does she even know we’re visiting? How much do these visits matter? What is best for her? But she is still mom so we keep visiting. 

 

There’s been some crying this week. My dad cries almost every time we drive away. And he cries when he hugs her and tells her he loves her. One day he cried saying that he thought the end was coming and that she wouldn’t be around much longer. Tears because she’s alive and it’s sad, and tears thinking of her dying. There’s sadness no matter what happens. Sadness because she’s still here but mostly gone. Sadness because someday she’ll be completely gone. It’s sadness that comes from loss. A slow, gradual, painful loss. There is no winning with this disease. It’s all just so sad. 

 

Recently I was reading volume three of Saints and came across this lighthearted poem written by Susa Young Gates: 

 

When I have quit this mortal shore

And “mosey” round this earth no more

Don’t mourn, don’t weep, don’t sigh, don’t sob

I may have struck a better job. 

 

Two days after my mom’s diagnosis in 2016 I got a call from Kevin’s dad Ken who had become my adopted father in Tucson. I had emailed him and the rest of their family to tell them about my mom’s diagnosis. Ken called me to see how I was doing. I told him how much my mom loved to serve and help others, and how it broke my heart that Alzheimer’s would take that from her. Then I started to cry and said, “But I know that someday she’ll be whole again and she’ll get to serve and love better than ever before.” 

 

I’ve mourned, I’ve wept, I’ve sighed, and I’ve sobbed. Ginny Schilaty deserves an existence of dignity, productivity, connection, and service. Alzheimer’s has taken so much from her. And yet I know that because of the Atonement of Jesus Christ she’ll strike “a better job.” And she’ll dance again. 

46 comments:

Anonymous said...

๐Ÿค

Anonymous said...

This is so beautiful, Ben. Heartbreaking and beautiful! I’m so sorry you are going through this. So painful!

Anonymous said...

Oh my goodness. I feel for you watching your mother go through this. But as a mother, I would be so honored to have these memories written about me. Thank you so much for sharing such a tender time of life you’re going through. ๐Ÿ’›

Vanessa said...

Sweet Ben, not a lot of words. Just sending you a hug. Thank you for sharing parts of your life. I know they make others, including myself, feel less alone in the world. xo

Anonymous said...

Dear Ben, you said that your mother deserves to be so many things that she has been her entire life. You are right. I just wonder if perhaps from the eternal perspective she is still that person? She’s teaching all of us to be kinder and more patient. She’s teaching us what real love is about. She’s teaching us what a soul that is connected to the Savior is worth. I cannot imagine the pain because that particular journey is not one I have walked. I can tell you that I am grateful for the memory care facility and for the length of time Buzz was able to be the primary caregiver. As you said most spouses last months. You are in prayers and hearts around the world as is your dad and your mom and your family. Remember that even this was part of the Saviors’ experience in Gethsemane, and continue to love as best you can.

Cris Conerty said...

Thank you for sharing this journey. I pray for you to be comforted and for your Dad to be strong. Cris Conerty

Anonymous said...

This is so very heartbreaking. And heartwarming too. So very grateful for eternity.

Anonymous said...

Ben this is such an important record of your days and hers. I feel blessed to read the ways that your family works to care for your mother. In the end McKay’s mom still remembered that he was a boy who was very important to her. Sometimes her son, her brother, or even her father. I am so glad the thing that she kept was that she was with someone she loved. Bishop Jensen and I love you and are always cheering for you.

Anonymous said...

Incredible how you are navigating such a nightmare, and I am grateful that you share❤️ God bless you and your amazing family.

KokoC said...

Thank you for sharing. So painful. Grateful for your willingness to share. Beautiful mom, beautiful son.

Brooke said...

Your post broke my heart. I lost my mom to brain cancer 15 years ago and while her decline was much faster, my experience was similar. It's so hard to not only grieve that you are losing your mom and to simultaneously grieve the loss of the mom she was before her illness. Sending you lots of love and prayers for you and your family as you go through this difficult challenge!

Anonymous said...

Beautiful words!!! I am sorry you and your family are going through this experience and loss. If I am ever diagnosed with Alzheimer’s in the future; I just wish and hope the same love and care you and your family have given your mom, I get from my family.

Anonymous said...

Thanks for for sharing some of your most intimate struggles. We lost my dad and best friend to this
heartbreaking disease. Prayers for you and your mom and family.

Anonymous said...

๐Ÿ’™

Anonymous said...

Thank you for sharing. This disease is so unfair and I’m sorry you are all dealing with it. I’m glad you have a greater view of things and pray it will ultimately give you comfort and ease your pain.

Anonymous said...

Beautifully written and very accurate, on all counts. Thank you.

Janet said...

My dad had the same disease. He was my person and it is so painful to watch. You describe it perfectly. I hated the vacant time where, for my dad , he could speak. Then a light would come to his eyes and he was lucid for a few minutes. He couldn’t speak as well, felt like throwing words. He did always want me to take care of mom when he was gone. I thought that spoke volumes about who he was, that in those brief moments, he was worried about her. I miss him everyday but am comforted to know that brilliant man is watching over me and is whole again.

Anonymous said...

Oh Benjy, I am so sorry for this painful and gradual loss of your Mom. It is a blessing that your heart is good and clear and you are able to tell us so directly what is in your heart. Thank you for this gift.

Anonymous said...

Oh Ben, this is beautiful and heartbreaking. Alzheimer’s is a cruel, ruthless disease. I too have lost someone I loved dearly to this disease. It felt as though we were losing her for 5 years. I’m so sorry for your sweet father, your dancing mom, and all who love her. May the Lord continue to sustain and lift each one of you. ❤️

Anonymous said...

Love and prayers to you❤️ Alzheimer’s is hard and sad May He continually be with you and your family.

Anonymous said...

Thank you for letting us cry with you, Ben! Much love, Amigo!

Anonymous said...

Ben, you’ve let those of us fortunate enough to know you through the internet get glimpses of the amazing people that your parents are. Even just from the bits and pieces I know of your mom and your dad, this breaks my heart. Thank you for sharing your beautiful and raw thoughts and feelings with us. Feeling your love for your mom and your testimony is inspiring to me.

Anonymous said...

Thank you so much for your powerful words and testimony. Thank you for sharing your tender feelings and emotions about your mom. ❤️

Anonymous said...

This took my father also. But I’ll never regret the time I spent with him even though he didn’t know me. It was priceless. I always felt like it was full circle, he took care of me now I took care of him. It was a beautiful thing.

Anonymous said...

♥️♥️

Homewardbound1 said...

I appreciate your sweet story about your mom. My maternal grandmother had dementia. My mother had Alzheimer’s. My only surviving sibling has it ( the other siblings passed due to something else). People ask if I am afraid to possibly have Alzheimer’s. I say - not really. If it’s coming my way there is not much that I can change about that fact. I tell my children now, to please let me do as much as possible, no matter what. Let me be, whatever I am, as I age. One of my daughter’s saw a video about how someone sang to a dementia patient, and suddenly that patient began to sing the words to the song. The patient had been mostly silent. My daughter has agreed to sing songs to me that I know and like - if this is to be my path. If this is to be, for me, I hope I remain smiling, and kind, and loving. These are are things that I focus on refining every day, for what may come. Your mom is sweet, kind, and loving. I bet she also likes to sing. Hugs to you, and your family, as you journey through this together.

DeAnn said...

Thank you Ben, this is so real and we wish it wasn't; so true and we wish it wasn't; so heartbreaking and we wish it wasn't . . . but it is. You are dealing with it in such an amazing yet heartbreaking way. Thank you for letting us peek in on your journey. Hopefully it will teach us about how to use our time better, enjoy our own journeys a little more and to look forward to the eternities๐Ÿ’ž

Anonymous said...

Alzheimer’s is such a jerk. I’ve seen it with Jason’s grandma - a beautiful, witty, fun person…to the “vacant” person. Just sooo so sad and hard. I’m so sorry you have to go through this with your own mama. Thank heavens she has a mansion above waiting for her - she’ll hit the ground running!

Anonymous said...

She will dance again. Because of Him.

Anonymous said...

I was deeply touched by your caring words. I have been reluctant to visit an old friend who is now in a more protective environment. You have given me some ideas of what I could do with her. Thank you.

Anonymous said...

๐Ÿค

Anonymous said...

This is so beautiful, Ben. Thank you for sharing.

Anonymous said...

๐Ÿ’›๐Ÿ’›๐Ÿ’›๐Ÿ’›๐Ÿ’›

Anonymous said...

Watching my dad suffer with dementia was awful. It was a process of mourning his passing before he had even died. But the other side of that intense grief is a sense of happiness that the enduring to the end is done for them. Their mighty spirits have been trapped inside failing bodies. We just celebrated the 8th anniversary of my dads passing and I can say that as more years go by the recent memories and awfulness of dementia have faded a lot and now at the front of my mind are the decades of good times and good days of the man he really was and still his. Lots of love to you and your family in such a tender, tough time. You are not alone. ❤️

Danelle Fobert said...

I’m crying with you Ben. ❤️

Anonymous said...

We are going through a similar journey with my mother-in-law. She now lives with us and some days it's really hard. Each day she's less and less herself. Most of the time she doesn't know which end is up. I feel your sorrow and pain. Thank goodness for our beloved Savior and Redeemer. In the end all will be well. ❤️

Anonymous said...

Oh, Ben. Hard. Another layer of loss. Hugs.

IG @Leah80 said...

God bless you all. ๐Ÿ™

Robin VanderRoest said...

This is so poignant, and loving, and heartbreaking. ❤️

Anonymous said...

What a tender tribute to someone so treasured♥️ So much gained in your time spent and so much lost too๐Ÿ’”♥️ But you’ll look back and be so grateful the visits and the memories will be that much sweeter. She’s a blessed mother/wife♥️

Anonymous said...

Thank you for this. I’m on the same road with my mom. The visits do matter. She knows you’re there even if she can’t express it.❤️

Anonymous said...

Love ya Ben

Chalonn said...

This post made me cry Ben. You're being very brave, and I know it's hard. I cannot wait to meet my Ginny girl in the next life when she is whole and doing all the things she loves with a whole and healthy mind. Ahh, she is magnificent. Love you for writing this tribute to her! Sending all my love!!!

Anonymous said...

Such a moving story and so true. Your description brought tears to my eyes. My mom had Alzheimer’s and my dad took care of her for 12 years at home, until he just no longer to handle it. Your description is just what my mom experienced, but she didn’t dance. Singing the Cal fight song and other Cal songs always had her singing every word even when she couldn’t speak a complete sentence. Amazing what music can do. Thank you for sharing your story. It will surely help others who are now experiencing this terrible disease. My mom was in a care facility for another 10 years. My dad visited everyday. This disease takes a village!

Anonymous said...

❤️

Staci Braithwaite said...

Your words just made me cry. Oh, to be so loved by a child! She is so blessed to have you as her son. She would be so super proud of you. You are making a difference is so many lives. THANK YOU:)