Wednesday, July 18, 2018

Dismantling a Life

Almost a month ago, I left home with Kenny, a summer adventure about to begin.  I never could have anticipated where I would end up, nor how different my summer was going to be.  I still have not returned home, and won't for another two and a half weeks.

Houston for the kids' Youth Event, Niagara Falls, a much needed retreat in the Finger Lakes area of New York, then a quick jaunt home to get Josh to return to Massachusetts for him to complete filming on his school documentary project was what was on the agenda.  Life never really turns out the way you plan it, does it?

When I left I was already pretty drained, it has been an emotionally really difficult spring for our family with lots of processing and new acceptance of disabilities, pain from the past rearing its ugly head, and tears almost daily.  You know how we all go through those seasons of life that are just darned hard?  Yup, that is where we were, and as mom my role in all of it requires a lot from me, in multiple directions, as therapeutic parenting kicks in once again.  I desperately needed some time to not be "on", and was very much looking forward excitedly to my time away.

Well, I did get about 3 days before everything went awry.

While Josh, Angie and Olesya were boarding a flight to join Kenny at the ELCA Lutheran Youth Event in Houston, I was readying myself to leave and head to New York.

While Dominick held down the fort and prepared to do the runs to church camp when the kids returned, Candi and I visited Niagara Falls.

It was beautiful, one of those places I have always wanted to see, and now never need to see again...hahaha!  The carnival like atmosphere near the falls was a bit too much for me, but the falls themselves were magnificent.

We headed to our little cabin in the Finger Lakes area, and as we drove we talked with great anticipation about our opportunities to kayak there.  All was looking good until we arrived and my suspicion that I was developing a bronchial infection proved correct, and within the first hour Candi broke her toe on the wood stove hearth :-(

But that was just the beginning.

As we were attempting to rest and recover to maybe enjoy the rest of our time, I received a long dreaded phone call, sadly, anticipated for years.  My mom, who had fallen again a couple of months ago and was in rehab, was not improving and her Medicare was going to stop paying for her care in 3 more days.  Yes, this was over the 4th of July holiday, and I was across the US, and unable to get straight answers from anyone.  My mom was totally confused, and virtually unable to help at all as fear caused her to emotionally shut down, and our many two hour long phone calls had me listening to silence as she struggled to process what was going on, and make important decisions.

Going back and forth with Dominick as we worked to understand and come up with solutions, it was obvious that mom can not live alone again.  She needs 24/7 care, she can not stand or transfer by herself even after over 2 months of physical therapy 2-3 times a day.  She is struggling with memory and a growing deficit with cognition, and we have been concerned for awhile about her medications because of that.  Mom is incredibly independent, and despite multiple conversations and urging her to consider accepting help over the past several years, she was adamant about living alone and maintaining her privacy.  We wanted that for her as well, but it was clear that was no longer an option now, which was upsetting for everyone involved.  Sometimes, you just have no choices, options are limited, and you have to accept a new reality, even when it is a reality no one desires.

After much deliberation, and a generous offer of assistance from Candi, it was decided that Dominick would remain in Colorado and deal with transporting the kids to and from camp five hours away, and Candi and I would handle things in California for my mom.  It was the least costly solution, and made the most sense for us considering we can't leave our kids alone with no driver as of yet, and taking them would be exorbitantly expensive...hotel rooms, food out, etc.  So we abandoned our vacation, and headed off to California to begin the arduous and emotionally draining job of emptying my mom's home, meeting with a realtor, and handling other business affairs.  We were going to get as much done as we could, as she has no funds to cover the cost of her care and we need to sell her home and apply for Medi-Cal as soon as possible.

Being the only living relative my mom has makes such moments more painful.  My brother and father have passed away, all her brothers have passed, and we have no other family.  There is no one to consult with, to replay memories with, to carry the burden with.  There is no one to affirm you are making the right decisions...or to help you work through that there really IS no other option, and it is OK to feel awful about it.  Mom would never be able to handle the altitude where we live, let alone the long two day drive to get there, and she doesn't at all want to leave her beloved hometown.  I understand that and respect it.

But has anyone ever felt confident in their decision to place their parent in permanent residential care??  Having it be 900 miles away makes it harder, as we can't visit regularly as we would if she were in our town, and it feels an awful lot like abandonment, even if that isn't what the facts show.  There is just no way to feel good about this, and I will likely never feel at peace over this.

The dismantling of a life is an act quite unlike any other.  We emptied mom's home in 27 hours.  We sorted, we stacked, we donated...we got the job done.  It was hard not to think of how temporary it all is, how the material things we value are really like dust in the wind, here today, gone tomorrow.  They may have held meaning for us while we used them, but once we have no use for them, what good are they?  Sorting through envelope after envelope of photos of my own children, letters and drawings in their own hand, we created a memory box for her filled with these seemingly valueless items.  For me, they would be worth more than gold, for others, they may have far less value.

We spend our lifetimes building and crafting the life that works for us.  We cling desperately to items of meaning for us, and things we think may send a signal to others about who we really are.  We collect, we hoard, we become emotionally attached to "things".  It made me wonder, do we collect, hoard and become as emotionally attached to our memories...of our loved ones?  Do we care as much about sending the signal to others about being a deeply loving, kind, thoughtful human being as we care about giving the impression of skill, of success, of popularity?

Often it is a death that brings us to this point, but this is a death of a different sort, it is the death of "the life that was", and that can bring the very same sort of thoughts to mind.  Mom is very much alive, but her old life is no more.  How she fought for it!  How hard she worked at independence for many years when it was so difficult!

In the end, a truck comes and hauls it all away...all the pieces and parts of our "life that was" are scattered, much like ashes from an urn.  Is there a real life in a nursing home?  Can we have any value at all in those circumstances?

God showed up even during this awful period for me, in the form of a woman named Dee.  She is mom's current roommate, but will sadly not be her permanent one.  Talk about being a light in the darkest places!!  Dee has been there for almost 2 years, and is youngish but in poor health, struggling with a wide variety of issues that keep her from walking and keep her wheelchair or bed bound.  When I was there with mom two months ago as she was settling in for a period of what we thought was temporary rehab, I got to know Dee a little.  God oozes from her pores, literally.  No, not in constant Christian-speak, but in little acts of kindness toward every single person she meets.  Every caretaker she encounters has shared their life story with her, and she remembers details and asks follow up questions days later...she truly cares.  She has a constant flow of visitors to her bedside, not from outside the facility, but from inside.  Workers flock to her as they share little stories, bathe in her laughter, and drink in the light that emanates from her soul.  This woman ensconced in a bed with bright pink sheets by the window in the last room down the hall draws people to her because even in this circumstance, she knows she can be used.  She writes thank you notes for people as she sees them do something special.  She stays connected as she can to long time friends with letters and Facetime from her bed.  She reaches out, she offers herself to others.  Imagine how it felt to be rushing to begin the difficult business at hand, to enter mom's room, have Dee's face light up and her arms reach out for a hug as she said, "How are you, child, I have been praying for you knowing this was going to be a hard time for you!"

Even in the dismantling of a life, God can and will be present.  God was present in the kindness of the Realtor we met who offered all kinds of referrals and assistance despite the fact we can't yet sign a contract...and who usually sells homes in the million dollar range, not 12 x 70 50 year old mobile homes.  God was there in the help offered by her neighbor, who lent us a car, invited us to use her bathroom when we dealt with a plumbing issue at mom's, and did much more.  God was there as I watched my mother in law and her kindness toward my mom.  God was especially there as Candi, limping with a badly bruised and broken toe, went up and down the steps a thousand times lugging heavy loads to donate.  God was there in the form of Dominick, reaching out with texts and help in the ways he could, encouraging me, recognizing how achingly difficult this was, offering compassion and understanding as we tried our best to clear everything out in the most exhausted state I can remember ever being in.

I think I have really grown, and it only took 50+ years to get here.  I see God in the hardest, darkest places...I almost "can't not" see.  My early immature theology many years ago had me thinking God was a magic genie and would fix it all if I prayed hard enough.  Now, and for many years, I have understood that God doesn't snap fingers and make it all better, but instead walks through it with us, showing us glimmers of light regularly so we know there is more than the painful temporary moment we happen to be in.

I will leave here in a week, after Josh completes his project, and then head back to California to spend time with mom and hopefully help her feel a little more settled and safe.  Then I will finally be on my way home, not necessarily having the respite I so needed, but definitely a lot more introspective and surely this experience will be used in some way I can't quite imagine.

And I will grieve, as we all do in situations like this.  I will wish for more for mom, I will accept that her life was what she made it and it suited her well, and I will learn and grow from my new understandings.  I will thoughtfully consider eventual dismantling of my own life, and what that might look and feel like for my own kids.  And I will use those thoughts to continue to craft a life that suits me best, just as mom's suited her best.

Not the summer I envisioned, not the rest desperately needed, but still, light and love, still learning and growing.  Rest will come, just not now.