Wednesday, March 25, 2015

alzheimer's. a portrait of my grandmother.

If you know me, even just a little bit, you know how important my family is to me. (really important, actually.) You'd also probably know a little bit about my grandma's Alzheimer's Disease, but you probably wouldn't know much about the long process that has gotten her to the point that she is in today. I don't talk about it often, because there aren't a lot of words that really express how I feel about it. (which is weird, because I'm pretty good with words.. and I'll talk about almost any topic all day long.) The Alzheimer's, though, not so much. It has been a pretty long road and has been pretty tough for her and for everybody in my family, but her especially. I can't imagine going from working in the medical field, working in a nursing home, with patients who have Alzheimer's, working in the nursing home that her mother died from Alzheimer's in, to learning that she had the same thing.
So, I'll start from the beginning. I was a pretty lucky kid, growing up. My parents were young when I was born, which meant that I got to have young grandparents. (I'm actually pretty sure that being the oldest grandchild on both sides is the best place to be, chronologically.) Nana M. is the youngest of my grandparents, at 41 years older than me. (I'm 28 now, meaning she's 69. Her 70th birthday is on March 31st!) Anyways, young grandparents meant that I got to have pretty active and close relationships with all four of them. I still have a pretty close relationship with them all, which is really important to me and something that I cherish. Even luckier for me, since my mom went to school while I was young, my brother and I had a lot of time with Nana, while she babysat us. We spent a lot of time going to the library together, playing whiffle ball in the backyard, and swimming in her swimming pool. I have really wonderful memories with her. I remember "helping" her with her gardening, which she was really proud of and put a lot of work into. I specifically remember learning about growing strawberries and about sunflowers. I remember the massive sunflowers that always ended up so much taller than I was. My hometown always had a program in the schools in which kids would grow plants (vegetables and flowers) and then everyone would bring in their best plants and they would be judged. Most of the time, either my brother or I would end up getting a first place gourd or sunflower (I'm telling you, the sunflowers were awesome) and we would move on to the "city" competition, which was held down by the zoo. Honestly, all that we did was help Nana plant the seeds in her garden and she did the rest. That's pretty important.

One really cool thing about her is that she was there each time that I met one of my younger siblings for the first time.

As I, and my siblings, got a little bit older, my grandparents took us all out for a special evening each year. They would, generally, take my brothers to see the Fort Wayne Wizards, a local minor league baseball team, play. They would take me to see a play or a musical each year. As much as I love baseball, I definitely thought that I had the better end of the deal. (and I'll still argue that.) I got the alone time with them and I got to dress up and see a musical or a play with them every year. My favorite out of the many is still "The Sound of Music." I was probably in middle school when we went to see that one and, afterwards, we went back to Nana and Papa's house and I was on cloud nine. I loved the show so much. Nana and I watched the movie version that night. It must have been 2 or 3 am when I went to sleep that night. (she fell asleep on the couch.) I'll never forget how much I loved that show... and I've seen, and loved, many shows (both with and without my grandparents). The Sound of Music just happens to be my favorite musical and it also is part of one of my favorite memories.

Sidenote: The fact that this month has been the 50th anniversary of The Sound of Music is not lost on me and, honestly, means a lot to me.

As I got older, I spent more time with my friends and less time with my grandparents. I think that happens to everybody. Through high school, then college, I grew and changed a lot. We still went to our yearly shows and hung out on holidays and for everybody's birthdays. We watched as Nana got sillier over the years. She had her first stroke at 51, back in 1997, which kind of got the ball rolling for memory loss and her current Alzheimer's diagnosis. In the beginning, she seemed like she was just goofy. She had always dyed her hair red, but the red got brighter than before. She started to say things that didn't make complete sense, because she had trouble finding her words sometimes. I remember one day, maybe Easter or somebody's birthday, we were having lunch at my family's house, and my grandma began to talk about how she had green onion ice cream at home. If I recall correctly, she was referring to mint flavored ice cream, because that is what we had at our house. It was just things like that, things that everyone accepted as her beginning stages of Alzheimer's, but was a little bit lighthearted. We could smile about those things.

When I went to college in 2005, I remember that Nana wrote me a few letters. That was something that I cherished then and is something that I still cherish today. I remember her writing and mailing letters to her sisters when I was young, which might be part of the reason that I enjoy sending and receiving letters so much now. I have friends in many states who receive mail from me, which is so important... Anyhow, by going to college, I was a little bit further away from home. During the five years that I was in college, Nana retired from work and got a little bit more sick. She still knew who I was and came to my graduation in 2010. She definitely had Alzheimer's then and had lost many important memories, but still knew the important people in her life. In 2010, I finished college and headed to Orlando, Florida. Her most rapid decline came during the four years that I lived in Florida. I missed a lot of it, only seeing her a few times a year when I would come home to visit. Over the past four years, she went from conversational, yet pretty confused, to having a fairly limited vocabulary. She went from recognizing friends and family members (and recalling most names.. she did refer to one of my brothers as "the skinny one" at one point.) to not recognizing people anymore. When I came home for my younger brother's graduation party in 2011, we played "keep away" with a Frisbee at my mom's house. Nana was good at throwing and catching the Frisbee. She was however, pretty bad at understanding the concept of keeping the Frisbee away from the person in the middle. She's throw it right to whoever was standing in front of her. That was a pretty good example of where she was, mentally, at that point. Later that fall, she participated in a four mile race, while my mom, cousin, and I ran a half marathon, and my sister, other cousin, aunt, and uncle ran a 5k. At that race, I remember having conversations with her and knowing that she knew who I was, but I could tell that she was not 100% sure about what she was doing that day. Today, her vocabulary is "yes", "no", "ouch"... and some other words. When I went to visit her today, she said, "oh geez" when she spilled some water on herself, and said, "let's go to bed."

 She moved into a nursing home about a year and a half ago. My grandpa tried to take care of her for as long as he could and did his best for many years. At some point, it becomes so difficult, nearly impossible, to take care of someone with Alzheimer's. It's a constant 24 hour a day, 7 days a week job. I know that it was tough on him, the decision to move her.. and I know that it was also hard on my mom and uncle. It isn't easy, but sometimes, it is necessary.

Now that I am living in Indiana again, I get to go visit her. It's hard that I missed her losing so much of everything. It makes me sad to think about all of the moments that I missed. I do wish that I could have had more time with her when she had more memories, when she was more conversational. I am extremely thankful that I had good times with her. I'm also grateful that I can take time out of my days to go visit her and spend time with her. I don't think she knows me anymore. I know that she doesn't know my name now. She does sit and talk to me, sometimes about complete nonsense, but I'm okay with that.
One thing that about her that I do talk about a lot when I talk about Nana M. is her affinity for story telling. I'd often ask her to get out her photo albums (which were organized by year) and show me pictures. During that process, she would tell me stories about her childhood, her adolescence, and about my mom's (well, and my uncle's) childhood. I'm so thankful for those stories.. and, well, I always have been. I was very young when I decided that I wanted to be Laura Ingalls Wilder and write stories about my life. I thought that someone, someday, would want to read my stories and be interested in my life, the same way that I loved the Little House books as a kid. I think that a part of that was because of the story telling. I loved hearing Nana's stories as much as I loved reading about Laura Ingalls Wilder. Stories are so important. That's why I've decided to write a book about my grandmother. (but that's a work in progress.)

Last week, Nana fell and broke her hip in the nursing home. She had surgery and spent a few days in the hospital. I spent one night with her and I'm glad that I did. (minus the no sleep.. hospitals are loud & weird.) It was good to have that time and I was glad to be able to be there with her. She did a lot for me as a child and I am glad to do something for her.

My favorite thing? That she still has joy. She smiles and she laughs.. and that's the most important thing.

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