Seasons of Love - The Care and Keeping of Parents

"Five hundred twenty-five thousand six hundred minutes

How do you measure the life of a woman or a man?"

Seasons of Love from Rent

It seems unfathomable that it's been a year. So much has happened since that chilly April day in 2012 when I drove my parents to Wisconsin. They had lived their entire lives in Illinois – in Chicago and the northern suburbs. Rather suddenly, my siblings and I uprooted them and brought them to live with us, for a few months, and now in assisted living.

If you’re of “my generation,” i.e. a Baby Boomer, you may be part of the “Sandwich Generation.” We suddenly find ourselves with responsibility to our children and our parents at the same time. For many, it can be daunting. For me, it’s been eye-opening.

I had never spent much time with older people. Truth be told, I felt uncomfortable around them. I couldn’t relate, couldn’t communicate well. They looked funny and they smelled funny. What if something icky happened while I was around them? (No, I am not proud of these feelings. I’m just being honest. I was a wuss.)

I’m of the opinion that God knows your deep, dark unspoken secrets and finds ways to help you face them. Or, as a small plaque in my kitchen reads: “The Lord is the source of my needs and blessings.”

Because of health and safety, my parents’ move had to be quick and decisive. In retrospect, this was also a good thing for me. I had little to no time to process how my life was about to change. Although, I do vividly remember bursting into tears the night before the move and then having a personal cheerleading session where I told myself to “suck it up, Buttercup.” I was pretty comfortable in my “empty nest life.” I had no need or desire to shake that up. Oh, silly me.

My parents lived with us for three months. I wish I could say that I was a perfect daughter/hostess/roommate. I was not. I whined…a lot. Sometimes, it was frustrating. Pretty sure I lost my temper. I tried really hard, and failed often.

And while I was frustrated, I’m sure that my parents weren’t completely enamored of their “new life” and being semi-permanent houseguests. If there’s one thing I know about my parents, they HATED imposing on ANYONE. Take my feelings and multiply them ten-fold. That is, I’m sure, how my parents were feeling. And yet, they were far more graceful about it all than I was. They NEVER complained. Not once. Thinking back, I’m humbled.

Eventually, we found a nice assisted living apartment for my parents. All of us were cautiously optimist. My parents would be living in a new place, with new people, for the first time in many, many years. Remember starting high school or middle school? Remember cliques and lunch tables and schedules and all of the stress associated with that? Well, imagine doing that when you’re 80 years old. Daunting, right? All of it was a learning experience…for them AND for us.

That’s the thing about this past year: I’ve learned so much – about my parents, about myself, and about life. This is the “blessing” part of this journey. I’m honest enough to say that never in a million years would I have chosen this path. And yet, here I am on it.

When I talk to friends about their aging parents, I have to bite my tongue to not give unsolicited advice. Over a year ago, a friend of mine, who is a nurse, suggested that I consider going to medical appointments with my parents because it would be so helpful to them and me. It seemed ludicrous at the time, but stuck in my head. I started to do a little of it then and now I do a lot. I’m so grateful to that friend for planting that seed of wisdom. I want to pay it forward and share everything that I’ve learned with everyone. But I realize that not everyone has any interest. They’ll have their own journeys.

One of the many blessings along this journey are the small conversations that I have with my parents. The other day, I was driving home with my mom from one of her doctor appointments. I complimented her on how she is so gracious and accepting of her health limitations, especially, but not limited to, macular degeneration that leaves her with virtually no vision. She said: “Oh I don’t know. I guess you just have to accept where you are and learn to live with it.” For somebody who has been transplanted and moved around like a virtual gypsy for the past year, that seemed rather amazing.

And so the journey continues. New challenges crop up all the time. I’ve become my parents’ chauffeur, medical advocate, personal shopper and often their confidante. I am, literally, all up “in their business.” I know they wish it wasn’t that way, but I’m discovering that we all end up in situations in which we wish we weren’t. Grace is what helps us cope.

There is a quote at the end of the movie Life of Pi: “I suppose in the end, the whole of life becomes an act of letting go, but what always hurts the most is not taking a moment to say goodbye.” I couldn’t help but think these were wise words to guide me on the rest of this journey.

Guilt Trip

It's been a long time - over three months. Not much has really happened and yet so much has changed. I've had so many thoughts mulling through my brain these past three months. Yesterday, I finally had to do an email "brain dump" to my siblings. I disguised it as an update, but there was nothing really new.

The gist of the update - Dad has checked out of life. Oh and I feel terrible about this.

No, seriously, he has checked out. He spends his days staring at the TV. He watches shows - NCIS, of course - that he's already seen again and again and again. Sometimes he even watches with the sound off. Perhaps he makes up his own dialogue in his head. I have no doubt it's better than the actual script of that show, but that's a whole 'nother blog.

I'm constantly bringing him books, in hopes to engage his mind. I want him to be interested in something...anything. But he's not. My hubby thinks he just doesn't want to read, but I won't give up.

He doesn't move and therefore his legs are getting weaker and weaker. He really struggles to get up. Mom is worried. The nursing staff at the facility is worried. I'm worried.

We're in a downward spiral and I feel SO guilty about that. I said as much to my siblings and they both responded with virtually the same sentence: "You are not alone in the guilt..." How can three pretty smart people feel guilty about something for which we have no control? We all know that it's up to Dad to improve his condition and yet we feel badly that his life has deteriorated to this point. Maybe because we felt like Dad was there for us when we were total idiots at points in our lives. We feel a strong sense of responsibility to fix his situation. And yet, we all know that it likely won't improve.

Yesterday, I took my parents to lunch. Mom was absolutely dying to get out of the facility. Can't say I blame her. Mom asked Dad to tell me about his "driver's license." He proceeded to tell me that he's going to appeal the revoking of his license. I then had an awkward conversation about how he's not really fit to drive and how a year ago, a whole team of neurologists tested him and deemed him unfit to drive. I also said that I didn't feel comfortable with him driving because of his general weakness. He told me that was unfounded.

And then I asked him if he had his license, where would he go? "Walgreens." That's it. Not the border or back home or anywhere but here. Just Walgreens. I understood. It's not about where, it's about independence. We've taken EVERYTHING away from him. (Yes, it's for his own safety, but still.) He wants control over something...ANYTHING.

In a perfect world, I'd give him a vehicle - a bumper car or maybe a golf cart or maybe Bubba Watson's hovercraft. He probably wouldn't go very far or very often, but he'd have the feeling of independence. He'd be in charge of something. But I can't do that. It's not safe for him or others.

It's funny how I've reached a stage in my life where what makes me happy is what makes "my people" happy - my hubby, my kids, my parents. And when they're unhappy, I feel the intense need to fix it all and the overwhelming and sad realization that that's not my job.

Sigh.

There's a place for us....

SIXTY years. That's a long time. Twenty-nine years. That, too, is a long time. On the 27th, my parents celebrated their 60th wedding anniversary. Today, my hubby and I celebrate our 29th. Wow.

Looking at my parents, it's somewhat surprising they made it this long. Their marriage was similar to so many of their generation. They were YOUNG - 22 and 21. They knew nothing, hardly knew each other but liked each other well enough. They would go on to live a lifetime of adventures and heartbreaks and celebrations and sadness. Yet somehow, they survived. For some reason, they stuck together and today, I know they're glad they did. I'm glad they did.

For my hubby and I, it was a different story. We were best friends. We talked for HOURS. We knew each other so well. We built our marriage on a foundation of trust and love - solid as a rock. We needed that foundation because we too would have our share of adventure and heartbreak and celebration and sadness. Through it all, we never doubted that we would be wherever we needed to be...for each other.

For my parents' anniversary, our kids recorded one of my favorite songs ever - "Somewhere" from West Side Story. The lyrics speak perfectly to my parents' journey and transition this past year:

There's a place for us
Somewhere a place for us
Peace and quiet and open air
Wait for us
Somewhere

There's a time for us
Some day a time for us
Time together
With time to spare
Time to learn
Time to care
Someday

Somewhere
We'll find a new way of living
We'll find a way of forgiving
Somewhere

There's a place for us
A time and place for us
Hold my hand
And we're halfway there
Hold my hand
And I'll take you there
Somehow
Someday
Somewhere

So, please enjoy this beautiful recording of "Somewhere" performed by our children.

It's OK, I've Got This

Yesterday, I was visiting my parents and Mom was lamenting about the myriad things she's worried about (Dad's gait, the people they sit with at meals, my sister, the world in general...) and I immediately started feeling bad. My first instinct was to want to fix or address every concern that my Mom had.

That's when it hit me.

I'm my Mom's "person."

Thanks to circumstances and geography and a complete overhaul of my parents' life, I have become Mom's "person" - the one she calls when things go wrong. The one she depends on for....Depends! (Sorry, but it's true.) I'm the person upon whom she dumps her many, MANY worries. That used to be Dad, but I'm quite certain that now it's me.

Yesterday, she needed a hug and the reassurance that everything was going to be OK.  She needed me to tell her: "It's OK, I've got this."

Do I really have it? Of course not. Who does? But I instantly knew that that's what she needed to hear at that moment. She needed someone to "hug" a little sense into her.

It's kind of daunting and it's kind of humbling. I've suddenly been entrusted with the care of two more people. Just when I'm at a point of launching my own kids into the big, bad world, God (yep, I'm blaming him) decided  I should take on a couple more.

This is, in no way, an attempt to take any measure of credit. If there is credit, it goes to my hubby - MY person. He has, somehow, navigated the cold, cruel world of elder care and cobbled together a safe and caring life for my parents here in Wisconsin. It's my job to do the small things - the shopping trips, the doctor visits, the holiday arrangements. Some days that seems like a big job, but it's not really.

But just like the day you bring your first child home, the thought that you are in charge of a human...or two, or three...is scary. Knowing that you can barely care for yourself and suddenly you should look out for someone else? Crazy.

And yet, I do sometimes see it as a gift. These past few months have been a little insane, but we've managed. And now, we have stories to tell. FUNNY stories. Sad stories. Interesting stories. Our lives are now enriched because we've gone on an unexpected journey. Isn't that when life really happens?

In these days following the horrific tragedy in Newtown, CT, there has been a lot of talk about the heroism of teachers and keeping children safe. I can't imagine how teachers do what they do - lovingly care for, teach and keep children safe. I couldn't do that and I'm in awe of my sister who does. But I did see a connection to my own responsibility watching over my parents.

Yesterday, my daughter asked why I was going to see my parents. "Do they have a doctor's appointment?" she asked. "No," I responded. "I just try to see them twice a week and I only got there once last week." I wasn't saying it to pat myself on the back. But I did want her to understand that sometimes we do things that put other people first.

Perhaps someday, she'll be visiting me.

Daddy's cynical, impatient girl

If you've been reading this blog for any amount of time, you know that a lot of my posts have been about my Dad. I guess I'd attribute this to the fact that my father has always been a huge figure in my life. Prior to this year, I adored my Dad without hesitation. Sure, he had a few annoying habits, but that was nothing compared to how awesome he was, right?

Fast-forward to this spring when my parents moved in with us. All of a sudden, I was completely blindsided and gobsmacked by the combination of a very human/flawed person and an elderly man desperately trying to retain his dignity while, little by little, it was being stripped away. I saw the ugliness of his daily habits. I often forgot about the dementia diagnosis and lashed out when he wouldn't bend to our demands.

Basically, I saw my Dad for who he really was, AFTER being filtered through the prism of decline, decay, dementia and general inertia. The man is aging and yet my stubbornness refuses to let go of the guy that I used to know - the funny, articulate, witty, interesting and engaged individual who taught me work ethic like nobody else. How is it possible that this same person won't even get up out of his chair or worse, won't change the channel on the TV?

My Dad isn't the same person I used to know. Then again, who among us goes unchanged through life?

I inherited a lot from my Dad for which I'm thankful, except for two traits that I wish I could give back - impatience and cynicism. Neither of them are serving me well in my new role of elder careperson. They are also not serving Dad very well at this, unfortunately, sad time of his life.

For me, impatience causes me to wish my parents could walk more quickly, remember things more readily or react to virtually anything with the speed of my peers. It has just occurred to me that I seem unwilling to meet them where they are. Remember months ago, when I wrote this second post about how this all seemingly started with a prayer for patience? I find, more often than not, I haven't really done very well in that department. No doubt another lesson is waiting for me down the road.

Then there's the cynicism that I learned from my Dad. When he and I go on excursions to one of his medical appointments, I have a hard time getting him to talk. My fallback is always to ask his opinion about people or things in the news. More often than not, his answers are short on length and optimism. As prone as I am to being a "Judgy McJudgson," I too find myself expecting the negative or making judgments about people about whom I know so little. Who am I to judge?

I don't have a resolution for any of this. My current relationship with my Dad is tenuous, at best. I'd like to say that I've changed, but I probably haven't. I constantly have to remind myself of how far he's fallen and how difficult that must be for him. My hope is that I can get into the habit of remembering to be patient and non-judgmental, something that does not come easily at all.

Perhaps I'd do well to remember the wise words of Aibileen:

A work in progress

I guess this is it. The way things will be...at least for a while. I'm starting to realize that life is a series of scenes, ever-changing. Things never really "settle down." They just remain stable...for a little while. And then they change again. Because kids grow, parents age, health declines. I'm not depressed, really. I'm just feeling a sense of clarity.

I've been having this interior struggle: The other day, I had this absolutely daunting, overwhelming thought - I've taken over my parents' lives. Although it was done with the blessings of my siblings and with the reluctant acceptance of Mom and Dad, I still realize that they are largely dependent upon me and Hubby. Wow. In some ways, this feels like being a new mom again - kinda scary.

Then again, the Control Freak side of me sort of likes the fact that I can positively affect their life. Is that weird? I just think back to the past several years. So often I would think: Gosh, I wish Mom and Dad lived closer so I could do this with them, or show them this or share this with them. Now I can, within limited means. We're still dealing with physical issues - poor vision, dementia, gait impairment - but there are a few things I can now do because they live closer to us.

So my life has settled into a bit of a routine. I try to go to Mom and Dad's at least two times a week. Mom calls with a shopping list of necessities and I purchase those along with a few treats - candy or other sweets that I know will brighten Dad's eyes. It's not much and most of the time, it feels woefully inadequate, but knowing they're safe and looked-after, is about the best we can do right now.

On the bright side, I'm loving the little chats that I have with Mom when I visit. She's a sharp one - doesn't miss a beat - fills me in on all the hubub at the facility. Some of it kind of funny, some good, but some not-so-good. And when it's not-so-good, that's when the guilt sets in. When she makes comments about how there's not much staff on weekends and it's really quiet - I brush it off, but I never really get rid of it.

That's when I have to remind myself that in many ways, we're in WAY better shape than so many other families who are struggling with what to do with our parents. Many friends have told me that they are thinking ahead and concerned about what they will do in the next few years. That's when I feel really proud. It wasn't perfect, but we did it. We stepped into my parents' lives and did the best thing we could.

Maybe it's because I'm feeling so impacted (or is it snake bitten?) by this experience, I'm now starting to think ahead...WAY ahead to what will happen to Hubby and me. We're only 52 and 53 years old, but the years speed by. The time to prepare is now, right?

I guess that's my new mission - spreading the message of "preparedness." It's never too early.

Meloncholia

So, we went on vacation for a week. That was nice. Got away. Felt like old times. Thought about the folks a little, but I'll be honest - not a lot. And still, while we were gone, Hubby was on the phone with a government agency questioning more of Mom and Dad's bills. I could hear the frustration and concern in his voice. The finances never seem to be the easy part. Seriously, people. Start stockpiling money NOW. Being old is a pricey proposition...at best. A financial juggernaut the size and effect of the Hindenberg and the Titanic all rolled up in one.

Yesterday, I knew I had to call Mom and check in. Asked her if everything was going OK. I was stupid enough to let myself imagine that she'd respond "Oh, everything is great!"

Nope.

Instead, I got a litany of mild to moderate complaints. Here, in no particular order are the things that are of concern to Mom:

- Mom and Dad miss their house...a lot.
- The Assisted Living staff is constantly changing. Mom said the nurses are different every day.
- The generic "Depends" I bought her are terrible.
- Mom and Dad want soup and crackers...because dinners aren't good there.
- They probably can't even vote...or don't know where/how to vote.
- Dad has lots of questions about money, etc. We need to talk to him.
- Mom saw another resident's apartment and it has VALANCES. Clearly, that's the secret to making these apartments look like a home. Apparently, their apartment feels like crap in comparison. (Yes, I inserted adjectives in there.) 
- There are rumors of two new couples moving in. She said this in a negative tone...as if this will upset their life in some way.

Honestly, it was a very depressing conversation. I tried my best to let Mom vent. After all, who else can she really talk to? If she's afraid to air her grievances with me, she'll just bottle it up and feel guilty. But it made me feel TERRIBLE. I felt like I was holding them prisoner in this gawdawful place.

I reminded her of why they were there and how I wished I could do something...anything to let them live in their home, but it's not possible. She understood, but I could tell that there was this lingering pall over their life.

Really, this shouldn't be a huge surprise to me. At some point, reality was going to hit them and they would have this melancholy stage. I just underestimated how much I would feel it as well.