Thursday, January 24, 2019

11 lessons learned in 11 months

When I was younger, maybe 13, one thanksgiving, my Grandma told me this story where some lady died and no one  knew for a week, because they didn't "check up" on her. My Grandma was horrified and told all of us Grand kids several times, "you've got to check up on your old people". And I always thought to myself that the story was made up, but took the principle in mind too heart. I used to call my Grandma nearly every day and we'd talk and talk. Some times for hours, sometimes just a little. Our calls always ended at 10 since that is when she went to bed. I told her every, random, little thing. Things that didn't matter. She told me the same stories of her dad and of growing up. She'd always ask about my mom and what she was doing. I told her mishap stories and anything I found exciting. We visited our grandparents frequently, but this maintained our close relationship. She died when I was 16, and her place in my life was lacking on many levels. The night she died, we were all gathered around the guest bed in the house. One of the things she said that night was "thank you for all of the memories." and I remember thinking to myself "that's the dumbest thing to say right before you die".

Little did I know what I was getting myself into...
11 months ago, I was 20 years old, reading from "the theology of the body in one hour" by Jason Evert. The sun was setting and we were headed west on our way to our (other) grandparent's for our mom's birthday. Crazy things seem to happen to me on my mom's birthday. I knew that she had been in Wisconsin for a few weeks at this point, but (sadly) I wasn't particularly motivated to run over there and meet her. I did think that I would *loosely* dip into taking care of her, but didn't have much of a plan, it was just an idea for the future. We made a stop at her daughter's house to get my sister. I went in, her daughter introduced me to her. This didn't register as a big moment with/for me. All I remember was she had her wheelchair jacked up, with her legs sticking out, her head hanging down a little, and she didn't say much to me. We got back in the car and I got back to my study. The day, somehow didn't get much writing space in my notebook.  It was never in *my* plan for this relationship to happen, or unfold how it has. everyday is an adventure, and I am learning many lessons...

bad, long, hard days of babysitting, and all I could think of was "I'm going to go see her after this!"

{practical lessons}
How do use a Hoyer lift. 
How to steer her wheelchair.
How to get a zip up jacket on her. (a feat!)
How to get her in and out of the car... and when the ramp doesn't work, how to shove a 6ft ramp in and out of place. 
How to help lift her. 
How to get her wheelchair stuck out of mud, and some basic wheelchair repair. 
Drugs like "oxycodon", "tramadol", & "quetiapine".
All the symptoms associated with MS- her symptoms. 
How an echo-cardiogram goes. 
How a supra-pubic catheter works, and how to change it. 

{lessons in humility}
it's hard to know what she wants sometimes, even she doesn't know. Some days, I can do *nothing* right. We've had some discouraging days out and about. I'm incompetent. She's given me "you're so terrible" speeches in the Narthex after Mass. You go out in public and you never know how long you're going to be able to stay. Sometime's you've got to bail, often early. And sometimes, you can't go at all. 

{life lessons}
When you spend so much time with someone who can't remember them self, you are inspired to take lots of pictures of yourself, in hopes that you don't forget yourself. 

{lessons in faith}
"always fold your veil in a triangle"
Hearing the stories of how hard she fought for her kids to be able to "have" the Latin mass. 
How she celebrated feast days with her kids when they were younger. 
How she not know her age or middle name or anything like that, but still has the Apostles creed memorized.
Praying the rosary with her.
Blessing ourselves with her relics.
Black cord knotted rosaries are the best.

{lessons in patience}
having to repeat yourself a lot. occasional big battles for small things. everything takes a long time, and always longer than expected. being tried in unexpected ways. staying calm when she is not. She has no sense of the calendar, of time, or of age (her own or others).

{lessons in responsibility}
babysitting is one thing, and even house sitting; but, when you're with her, she is your complete responsibility. anything can happen! she is a bit of a mystery and keeps us busy. Hazards are everywhere. You've got to constantly be on alert. When out and about, you can never leave her side. Sometimes, you have to be really assertive with her (and this is not natural to me!). 

{the beauty? of dementia}
Dementia is hard, confusing and a mystery all at once. Every day is a new day. You can tell the same stories and it's like she's never heard it before. 
Some days she's been so delusional and hallucinating, that you've got to just keep making things up just to get through the moment.
Also, say one day we're having a bad day, she's upset over who knows what and is frustrated and yelling. After that I'm feeling discouraged. but, by the time the next day comes, she remembers none of it and is back to thinking I'm amazing. Every day is a new day.
I have discovered the real and full importance of memory work, even if over not every important things. 

{its kind of like having my Grandma back}
Picture this: we're in her room... she's sitting there, I am laying on my stomach on her bed propped on my elbows reading from the 40 dreams of st John Bosco to her. I always think to myself, "look at us, its like we're two friends, just doing things" ( I always want someone to take a picture of us like that)
We're basically best friends. We really are...eating reece's, me reading her mail to her, and our little outings to mass or friends.

{getting the bigger picture}
I've tried to immerse myself in her world. In my free time, I bug people by asking "tell me everything you know about her!" and I boldly introduce myself to her old friends after daily mass. I got the link to the YouTube channel of family home videos. I am always texting her daughter when I am with her...."did this actually happen?", "did she really do that?".... We sit and go through family pictures on her iPad. I've met her sons in increments. 

{hard lessons}
an example- at the homeschool graduation last year, (not to be selfish, or make this about me), but I brought her to it, and I told her daughter "I'll sit with her", "I'll stay with her at mass". we tried to get her into her smaller wheelchair to get her up in the gym for a few hours, but it just wasn't going to happen that night. so there, she and I sat in the hallway of the school not apart of anything at all. everyone knew we were there. I couldn't leave her. Her family and my family came down to see how we were throughout the night. but I can only think of one other person who talked to us. and, it's hard. That low social interaction, even when you're out in public, it's hard. 
I also, wonder why doorways were made so thin? and why do those rotating entrance doors even exist?! 
caregivers are amazing. they live an isolating life. every break they get is too small and not enough. full time caregivers have a lot of stress, and have a lot going on. 
Doctors, nurses, and those in the "trauma" area of the hospital--WOW! I can't even imagine what you see, live and experience every day. you also, need lots of breaks and support. (You know, there are those frightening hospital shows on TV like "Chicago Meds" or whatever, and I think to myself, WHY would you want to dramatize or make up these things?! Serious, scary trauma is real, and happens.)
To everyone who has ever taken care of her, and all of her good past caregivers, I am grateful. 
I have a great aunt who took care of her paralyzed (during surgery) husband for nearly thirty years. day in and day out, gruesome work. I didn't understand the full depth of things, or appreciate her work at the time. I didn't understand why she never left town, and could barely go to any family parties. but, I know now. Good care and good help is hard to find. 
It's a whole other world out there. I have this cousin, she's in her 40s and she's got MS too, and she does yoga and whatever and is always posting on Facebook about her visits to the neurologist or whatever, and people are always cheering her on. My cousin's father in law died from MS, when his daughter was 21. Their family is always doing these "walks for MS" or whatever. and that's great, I guess My grandma was never into those things for cancer, so I have a hard time with those. It's great, I guess, that these people rally and whatever, but it's a hard, and lonely journey.  MS IS HARD.  I try to wrap my head around it. Seeing someone who I love, who once did everything, was funny, and was physically active, to now, only have the use of one arm/hand, and some head/neck motion. It's unbelievable!

It's not all bad, and there is joy. There is this satisfaction of when things are going well (or better!)'s like a high. On the really good days, or moments, I always think to myself  "this is the fruit of my work" and "this is why I do this".  Our little visits...they are great. Seeing her face light up when she sees me...when she says "I missed you terribly"..."I love you"..."come back soon".... Our rosaries, our sunset watching, our TV watching, our book reads.... her stories, her quotes and the little things she says. There are comical things how she has me reorganize her closet. And, true to her character, she is still very particular about things and how they are done.
Every time I go to mass I pray for her, and every night depending on where I am, how the day went, and what mood I'm in I pray for her. I try to write it all down...the things she says, our experiences and everything we do together. Life is short. I try to savor it all.
I can't believe we've know each other for 11 months now. I can't wait to see her tomorrow and tell her that!
I love her, I am so grateful for her, her life, and our relationship. I am grateful for every day that we have together. I admire who she once was, and I still have so many things to ask her about.
In faith, and with hope, I watch for our future together. Life is magnificent.

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