Showing posts with label Caregiving. Show all posts
Showing posts with label Caregiving. Show all posts

Monday, March 20, 2023

Bridging the Gap

Our Mom was paralyzed in a car accident 29 years ago today.  She didn’t realize that today was the day because she was playing Bingo.  But, her kids did.  

My younger brother and I remember the knock on the door in the wee hours of the morning.  We were the only ones still living at home.  I was 16, he was 14.  My sister was newly married and my older brother was in boot camp at the Naval Training Center in Illinois. 

It was our Uncle and Mom’s best friend at the door.  Mom had been in an accident.  She hurt her back, so she was flown to the nearest city with better doctors, is what I remember.  But, I also remember thinking she just wouldn’t be able to lift anything heavy for awhile.  

That turned out to be true.  But, how true, I had no way of knowing.  

My brother remembers a yellow envelope with her belongings, cut rings, and money covered in blood. I remember seeing her in the ICU, how bad the room smelled, metal coming out of her head and arm, asking her how she got some random abrasion, and hearing her robot voice say she would walk again. 

I left the next day for Disney World for my planned Spring Break trip with my high school choir.  I didn’t want to go, but staying wasn’t helpful to anyone.  She came home from the rehabilitation hospital three months later.  My brother and I became caregivers, and adults who looked like children.

Today, 29 years later, I’ve been very unlike me.  Fighting tears most of the day, actually.

I heard River of Dreams on Saturday while I was making dinner.  I heard it because I put it on my Spotify playlist awhile ago, because it reminds me of my Mom.  She used to play it on the piano and the piano itself would come to life.  But, Saturday, while standing in my kitchen, it brought my walking, piano-playing Mom and my little girl self into Room 167 at the nursing home, and I wept for all of us.  

So many losses over such a long period of time.  If you’re 29 years of age, you’re still young.  But, if you’ve been in a wheelchair for 29 years, or caring for and loving someone who has, it seems like a different kind of 29.  Maybe like dog years, where 1 year is really 7 years.  Or something like that. 

But, I need to write today, because I’m still surprised by my emotions, which tells me I’m not as smart as I think I am.  Especially after sooo long, and after Saturday.  I thought I got “it” out of my system.  Whatever “it” is, exactly.  

After talking to Mom today, and realizing that today is just another day for her, I think I am figuring it out.  

Today, I am sad for me and my brother, and for losing the last few years of our childhood.  I am sad for my older siblings, too, but in a different way.  We all bear and have borne different kinds, levels, and layers of suffering because of our Mom’s accident and the upside-downness that follows.  Where we went to college, or not.  Where we lived, or not.  How far we dared to dream, or not…

Even now, she is often at the center of our thoughts.  Our emotions vary widely, depending on what is happening with her, what she needs, or what we wish were different.  

But, because her suffering is and has been so great, her children’s suffering, as it relates to her own, remains unseen.  She is like a ship making her way through the ocean.  We are tied off in little inner tubes bumping along behind her, riding the waves as they come.  

It’s not that she doesn’t care, she just can’t see us back there. 

I was recently trying to convey some uneasiness I had about some changes in her health.  She said, “Well, how do you think I feel?”  

She’s right, of course.  

But, that didn’t keep me from feeling my feelings, just like it hasn’t for 29 years.  But, there’s often no place for them because her suffering is so giant and unending, it hogs all the room.  So, I stuff them, and cry for her instead because there’s plenty to cry about.  

And now I know something else.  I am familiar with pain created by a gap in understanding.  

I am writing a story about what life is like after losing a spouse.  I am an interesting author for such a story, because I have not lived that life.  I hope I never will, but am not naive enough to think I won’t.  But, I meet weekly with people who are.  I hear their stories and recognize their great suffering because their spouse died, but also that their suffering is unnecessarily greater because it is not seen nor understood.  

After today, I understand my motivation and my ability to write about someone else’s suffering a little better.  I see them and I see a gap.  

I don’t like gaps.  They’re unnecessary.  Love and compassion and listening and trying to understand can close them, or at least come close.

Dear Mom, Josh, Mike, and Michelle, spouses missing their spouses and all who live with a gap in understanding,

I see you.  I hear you.  I love you. And I want to understand…

P.S. Heidi, same goes for you…

Love, 

Me

 



Monday, July 5, 2021

Sorting Day

It might be too soon to write, but this is the place I come when my heart and mind are full.  It feels too raw and too one-sided, just yet.  The main character in this story is my Mom, but she won’t be writing it and may or may not read it.  Even now, her iPhone is disabled.  Passwords can be problematic and customer service, worse still. 

I’m sitting in our hotel lobby, a 1/2 mile from her new home - The Healthcare Resort.  It has been her temporary home for the last 3 weeks, but the decision to stay was made two days ago.  Finding the care she needs at home has proven an impossibility.  Good care days apart is just not good at all.  

Yesterday was the 4th of July.  Independence Day.  We sat outside on the patio with the most perfect of breezes and ate take out from her favorite restaurant.  We played cards and had a private concert.  My son played the Star Spangled Banner and Sweet Home Alabama, unplugged on his electric guitar.  Pretty sweet, because he had to sit all the closer, so she could hear.  



We talked and colored and watched 50 fireworks shows all at once, stretched across the Topeka skyline.  We watched the deer who made their peace with the fireworks, but not with us, and knew again we were in a good spot when others came to watch the show from where we already were.

It was the best visit we’ve had in years.

But, today is Sorting Day.  She will go back to her apartment for the first time in a month and will be looking for a particular set of things…The essential ones.  

When you’re disabled and live alone, the essential things have to do with survival.  When you’re moving to a place where survival requires less of you, you can remember that you have art supplies and imagine having the energy to use them.  You can imagine spending an evening on your patio with your family instead of in the kitchen, because you did that just last night.

If you’re a daughter along for the ride, you keep telling yourself these things and take a lot of pictures of the good, because you need them to get through the part of this day that you’re dreading.  You naively believed that it wouldn’t come to this and you can’t stop wishing that it still won’t, somehow.  But, you will show up at the agreed upon time, and it will unfold like everything else.  And it will be okay.

The good will keep coming along with the impossibly hard, and we will keep trying to remember that Independence Day can include freedom to do life in a new way.  Maybe even a better way.  Last night reminded us that this isn’t all about loss and losing ground in the game of life.  

After all, we haven’t played cards or watched fireworks…in years.  We’ve been too busy doing the things we’ve always done, and learned we can survive without deviled eggs in the process.

I snapped this last night for her brother and sister-in-law after we hung up the phone, so they could see where we were.  This morning, it looks different and feels weightier.  I’m tempted to let it stand alone with all of its significance, and break my heart.  And all of ours.  


But, I remind myself that she’s not alone in that parking lot, or in that place.  I’m on the other side of the camera, and my siblings will be here when I am not, and her friends will be here when they are not, and her favorite priest will be here when they are not, and the staff will be here when they are not…

And with all of that, my husband said he sees hope.  So, I am going to go with that…