Tuesday, September 24, 2013

Disneyland with Alzheimer's

We had a precious day at Disneyland last week, and even though my mother isn't able to remember it, this post is the way I'm going to remember it for her.

Here's a quick back story:

Even though I grew up in Southern California, my mother never joined us on our occasional trip to Disneyland.  She was 42 when she had me and 46 when she had my brother, and I think a day at Disneyland just felt too exhausting for her.  (But she happily sent us with my dad or my older sisters and wanted to hear all about it when we got home.)

A few months ago, we found out that my sister Linda, her husband Brent, their son Austin, and Brent's mother Ursula were being treated to a deluxe Disney vacation through the Make-a-Wish Foundation.  Austin was born with Tuberous Sclerosis Complex (you can read their story here), and he has spent much of his life in and out of hospitals and doctor's offices.  He is a sweet, sweet boy, and his parents are two of the most devoted people you'll ever meet.  We were thrilled when we found out about this special trip.  (That Make-a-Wish Foundation is amazing.)

Because Linda and her family would be at the Disney parks during the majority of their trip, and because my mom's Alzheimer's is progressing quite rapidly, my dad thought it would be nice to take my mom to Disneyland for the day--so everyone could be together.

This is Linda, Austin, and Brent (photo taken on Thursday--we joined them Friday):



I love these decorations.




I took my children out of school early that day (so grateful for the Southern California annual passes that weren't blocked out), and we met up with my mom and sister Lisa in New Orleans Square.  Grace was the first to run up and greet them (while Alia was taking the photos):


This is one of my most treasured memories.  It's a smile of recognition. 


You see, Alzheimer's has seven stages, and right now my mom is in stage six.  That means that in the next two to six years, she will most likely lose her ability to smile, to hold up her head, and to recognize her family members.  So, to me, every smile is worth a million bucks.


Right before I hugged her in this photo below, I said, "Mom, we have never been to Disneyland together!"

She got an excited look on her face and said, "Well then, we must set a date!"

"Today!" I replied with a little giggle. "Today is the day. We're here!"

"Oh, really?" she responded.  Then she looked around like a little child on Christmas morning and said, "That is wonderful!"

I'd prepared a list of wheelchair-friendly attractions that I thought she and Austin would enjoy, and even though we only made it to two of them, we had a lovely day.  (More photos below.)


First, we went on a walk to Sleeping Beauty's castle and took some photos (look . . . she's waving at you!):



Then my sister Page and my dad joined us for the new show at the Fantasyland Theater called "Mickey and the Magical Map."  (It was very cute.)






We got an extra little dose of magic during the show when a mysterious music note made of water appeared on Spencer's shirt:


He hadn't even been drinking anything that could have spilled.  So random.  (But quite fun, don't you think?)

We were planning to meet Austin and his family at that point, but since we were right next to "It's a Small World," we thought we would give my mom the chance to ride it.  I took a lot of pictures because this is one of the only rides that is fully equipped for a wheelchair to be rolled right on top:


Mom got a little nervous when she was being lowered down into the boat.


But then Lisa explained what was happening and told her how much she would enjoy the ride, and everything was great from that point on.





Alia recorded this video that I just had to include.  My mom sang "It's a Small World" the entire time.  So, so adorable!  I will love this forever.


After going through the whole circle, the ride operator asked if we wanted to go around again. We all laughed because that had been our family joke leading up to this day--to let my mom ride "It's a Small World" all day long . . . because it would be new to her every time. (But we didn't do that.)

Instead, we walked up to the front of the park and met up with Austin, Linda, Brent, and Ursula.  Oh, I just love them!



A few of us went on the Jungle Cruise:



and then took a little break in Adventure Land before heading into the Tiki Room:


We gathered on Main Street (and met up with my sister Laura) to watch the parade:


And I felt like I was in heaven--sitting there on the curb next to my mom's wheelchair, holding her hand and watching the dancers and floats go by.  It felt so normal . . . and so happy.  

I had just found out about the seven stages of Alzheimer's that morning (from my dad), and as I sat with her and realized how quickly our time together is moving along, I wanted to freeze that moment.

I want to remember how soft her hands feel and how cute she looks when a big gorilla character comes up to say hi.  I want to remember how she makes eye contact with me and says "I love you"--even without using words.  And I want to remember how safe and complete I feel when I'm holding on to her.  I've always felt that way--for as long as I can remember.

When I turned to my right, I saw this sight--Spencer wearing his brand new Mickey ears that he'd been saving for--

and I felt incredibly grateful for the beautiful children in my life who fill up that ache that's been growing in my heart.  Parenthood is a gift.

After the parade, we watched the flag-lowering ceremony, and that was amazing.


The Disneyland Band comes out and plays patriotic music, and they gather members of the armed forces (past and present) around the flag pole.


My dad served in the army, but he's the kind of person who never wants to call any attention to himself, so he stayed back and watched--with tears in his eyes.


I got to snuggle by him:


We then ate dinner at the Stage Door Cafe and visited by the Rivers of America while my brother-in-law Steve took seven children on Space Mountain and Buzz Light Year. (Thank you, Steve!)


And after my children and I did a whole lot of walking around trying to meet up with Eric (who was joining us after work but didn't have his Disney pass because I'd accidentally taken it with me), the whole family met up for our final attraction: World of Color:


I thought it was lovely, and I think Austin and his family really enjoyed it, but in the middle of the lights and music and water dancing, someone asked my mom, "Do you like this?'  

She simply replied, "No."

(She's so funny.)

One of the sweetest experiences of the day happened right before we left.  

Lisa and I had taken my mom to the restroom, and on the way back, my mom was acting quite confused.  It had been a long day, and she was exhausted.

"I am not your mother." she told Lisa.  "I am the person who is your mother when your real mother can't be here."

"Who am I?" Lisa asked softly.

"You know who you are." my mom responded--trying to brush off the question.

"Yes, I know who I am, but do you know who I am?"

My mom paused for a moment.  She brought Lisa around right in front of her, and Lisa knelt down so she was looking directly into my mom's eyes.

They sat there for a few seconds--Lisa with a sweet smile, hoping my mom would know her name (but realizing she probably didn't), and my mom searching Lisa's face deeply, waiting for something to trigger her memory.

Finally she gave the best answer she could give, and her words have been playing over and over again in my mind ever since:

She simply said, "I know I love you . . . very much."

Lisa nodded.  'Yes, you do.  And I love you too."

I changed the subject at that point and started showing my mom all the photos from above that I had on my camera.  I pointed to each person and told her all of our names.  I didn't even want to ask her if she knew my name because (a) it's got to be extremely frustrating for her, and (b) I don't think I'm ready for that to happen yet--to have my mother look me directly in the eyes and not know who I am.

So instead I tell myself what I know is true--that even if she doesn't know my name, and even if she forgets that she's my mom, she loves me (all of us) very much.

I'm grateful for that beautiful, beautiful day.







14 comments:

  1. oh my goodness April. I tried to hold it all together when I started reading this and then I had to struggle to read through all the tears. What a special day and what memories you now have. And with the challenges facing your family right now you did such a special thing all together. Lots of love to you and your mum who is such a special lady to have you all surrounding herxx And to your dad too. I watched my own dad suffer as we were losing my mum and he's a navy man so they don't like to show their feelings either but the love that he had and still has for her even though she's not with us will always be something special in our lives. Take care and thank you for sharing that with usxxxx Oh and I think austin looks like he has the best parents ever:)

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    1. Corrie, thank you for your continual support. I'm so grateful for you being willing to share your experiences losing your mother and to strengthen me while I go through the same process. It means so much.

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  2. So beautiful! I love the first picture of you and your Mom together, she looks so peaceful and happy. I also love the picture of you snuggling up to your Dad, so sweet! Hold onto him as I'm sure this is so hard on him! I'm so glad you and your family have this memory with her.

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  3. What a beautiful day and memory. I had to read it through my tears. I love the ending. A mother's love is a powerful thing.
    Love you all!

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  4. LOVE this! Love the photos, love the tender moments and God's mercies. xo

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  5. So precious April!!! It was so hard on me when my grandma went through the same things. She was like a second mother to me and she spent so much time raising Sam and I. It started right before I went on my mission. It progressed very fast in those 18 months I was gone. By the time I got back she didn't know who I was and that was so hard for me. Three years after I was home from my mission she passed.

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    1. Autumn, I didn't realize your grandma had Alzheimer's, as well. I remember her...such a sweetheart.

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  6. This was beautiful, April. I don't think you need to worry about forgetting your mother's smile- it is perfectly reflected in your sisters, your children, and your own. xoxo

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  7. This brought tears to my eyes. You are an amazing daughter. Your mother and your kids and all of your family are so blessed to have you! I aspire to be more like you. Thank you for being you!

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  8. What a powerful post. So glad you and your family had a special day together. The photos really help capture and illustrate it too. God bless. Heather (in Scotland)

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  9. What a beautiful post, thank you so much for sharing, I cried almost all the way through. So bittersweet. My own mother has Parkinsons and I have so many regrets - not accepting the diagnosis earlier, not wanting to admit it would end badly, and now it is almost too late, certainly too late for something like Disneyland. Your pictures and stories, I'm sure you will cherish them forever, as I would if I could go back and have a do-over of the past five years. Be at peace! You've done yourself and your mother proud!!

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  10. I spent the day listening to Conference and then read your post. The plan of happiness really is family life because it lasts forever. What a beautiful day you shared with your family.

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  11. I am actually taking my mom to Disney Land in less than one week... she is in stage 3, so I am hoping she enjoys it! She told me that she wants a wheelchair because its hard for her to walk without getting horribly winded. Any suggestions besides some of the rides you mentioned that were wheelchair friendly? Any overall suggestions for taking someone who Alzheimer's to Disney Land? Thanks!

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  12. I am actually taking my mom to Disney Land in less than one week... she is in stage 3, so I am hoping she enjoys it! She told me that she wants a wheelchair because its hard for her to walk without getting horribly winded. Any suggestions besides some of the rides you mentioned that were wheelchair friendly? Any overall suggestions for taking someone who Alzheimer's to Disney Land? Thanks!

    ReplyDelete



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