Dealing with Dementia: Don’t Forget Fun

potatoes fun knife fork

Photo by Pixabay on Pexels.com

For Labor Day, we were invited to some friends’ house for a barbecue — they are new friends from church, a young couple and their adorable ten-month-old. If those cherubic cheeks didn’t seal the deal, the fact that she asked me to make my potato salad and favorite frozen dessert gave me warm fuzzies. This kind of casual hospitality is wonderful because it (a) lets me contribute and (b) is so low-pressure: just sit out on the covered deck, sip wine and feast on burgers and sides … and if someone misbehaves, no one cares. They even invited the dogs to come and romp in their spacious back yard.

The best part was watching mom’s eyes light up as I sang silly songs to the baby … the same silly songs, I’m sure, that she once sang to me. “You look just like a grandma,” she said to me. And the thing was, I kind of reveled in it. My own teenagers sat with their faces in their phones, until Chris got bored and started playing with his dog … our eleven-year-old Aussie shepherd who chased a ball, pulled something, shrieked, and fell down.

That was when life set in again. Mom urgently needed a rest room, Craig stood to leave because two hours was the most he could spare away from his desk right now (he’s been working nonstop for the last month), and Sarah launched into a never-ending monologue about her birth family, who she would be spending Christmas with this year.

Reluctantly I got up and started clearing the dishes. It was nice while it lasted.

We all got home and went to our respective quiet places … and the next thing I  knew, three hours had passed. I had NAPPED for THREE HOURS! Probably would have kept on napping, too, if my daughter’s tumbly hadn’t started rumbling. “What’s for dinner, mom?”  I was struck by the heaviness of the quiet. I could feel the stress closing in again, like a suffocating cloud.

Craig was still at his desk. Mom needed her meds and a bath, but she was still passed out on her bed, fully clothed, having been exhausted from our excursion. Chris was perched by the dog crate, plaintively wondering aloud if Maddy needed to go to the vet. (We spent three hours that night at the animal ER.) Sarah was alternately blasting her music and screaming at us to get dinner NOW.

I whipped up a sheet of Super Nachos, heated up some leftovers for mom’s dinner … and then I dug a Buster Bar out of the fridge (half a bar is my go-to indulgence), closed my eyes, and thought about the day. I could still see my mother’s happy smile and hear the infant’s delighted chortle as I blew a loud raspberry on her tummy. My tastebuds still danced from that glass of pino grigio, juicy burgers, and my friend’s delicious green bean almond salad. Tomorrow would come — the caregivers, the workday, the chauffeuring kids hither and yon. Yes, we were likely looking at thousands of dollars if the dog needs surgery.  But today … today we made a memory.

If you are a caregiver for an elderly loved one (or younger ones with special needs, or whatever your particular situation entails), it can be easy to get caught up on the frazzle dazzle. But try not to. Try to find one thing … anything, really, to enjoy. To remember and treasure as a memory. Those bright spots are golden when the rains come, as they inevitably do.

Moms are the heart of the home, the keeper of secrets and memories. If we find a reason for joy, the rest of the family tends to follow suit. And when we give in to the dark side, home becomes a dark place indeed. So … hold on to those wine-sipping, baby giggling memories. Find something to laugh about. It matters more than you know.

 

A Mother’s Day Wish

flowersSo last night just as I was putting dinner on the table, Man Boy galloped through the kitchen, into the dining room, and sent a plastic package spiraling toward the table. “Happy Mother’s Day, Mom,” his voice trailed off as he galloped upstairs to the sanctuary of his room.

My annual white roses had arrived.

Now, I love getting flowers, and white roses are my particular favorite. (Mom got some pretty ones from my sister in New Hampshire, too!)

The thing is, this weekend is prom, and Chris is taking someone we haven’t seen since we moved here from Pennsylvania. When he turned 18 he was allowed to reconnect with his birth family, and so this seemed to him  like a good way to go. To be honest, I have mixed feelings about the whole thing. But it’s time to start letting go, and letting Boy Man turn into Manly Man. Make his own choices.

Ready or not.

So, Lord, if you don’t mind, here are a few things I’d really like for Mother’s Day this year.

Help me to see the world through my teenager’s eyes. When I’m on the receiving end of Sass and Snarl, it’s easy to get irritated and belligerent. Help me to breathe deep, and exhale compassion, consideration, and kindness. You know, the kind of things I’d most like from them.

Give me a heart for the ornery. You know who I mean, Lord. Help me to flex my spine a bit, and dust off my sense of humor, and have a little fun.

Let me keep perspective. Just because I don’t like what they’re doing or saying, doesn’t mean it isn’t a normal phase of their development. Give me the grace (so I can give it to them) to let them be just exactly who they are, without reproof or criticism.

And … well, please help me. Because you know I don’t have an unlimited fuse. Help me to live in a way that, when I am old and wrinkled, they remember me fondly … and pick the good nursing home. Because I know that just as shaped their past, they will have a hand in my future. It’s the beauty of family … something we can all celebrate this Mother’s Day.

My Dirty Little (Not-so-Secret) Life

toilet-paper-150912__340I’ve reached the stage of life where it seems like half of my waking hours are spent monitoring someone’s delicate internal workings. The kids’. The dogs’. My mother’s. And yes, occasionally my own. (Fortunately, my husband manages his own. At least for now. Fingers crossed.) If I let down my guard for even a minute, things can take a very nasty turn.

Sometimes you just have to laugh and carry on. Take last night, for instance. Outside, rains pelted the house as thunder erupted on the quarter hour, sending our Chiweenie Gretta into a state of mortal terror, quivering and shaking while hiding between my thigh and the couch cushions. The time had come and gone for her walk (there was NO WAY she was setting a paw outside), and so I got out the doggy diapers. Normally she hates these things with the passion of a thousand suns, pooping through the tail hole in payback as she dives under beds and other low-hanging places in an effort to tear off the tabs so she can wiggle free. This time she submitted to the diapering without a whimper, and went in her crate without incident. (That’s one for the home team … no pee spots to clean from the rug tonight!)

And then, just about this time, the electric recliner made its characteristic nightly whine. Time to put Mom to bed. Off with the day pants, on with the night pants — and now, with the morning sheets, another load to wash, dry, and have ready for the next use.

Here’s the thing, and I’m going to try to sketch this out in vague terms because I love my mother. Sometimes things get messy. Really messy. And while I do the best I can to get her cleaned up without making her feel bad, I’ve sometimes wondered if I’m the right person for the job.

It’s not that I don’t want to do it, not really. After all, this is the woman who diapered me and my sisters for the first years of our lives. And yet, I can’t help but feel that somehow I’m crossing a line. Most mothers don’t want their children to see them that way … yet here we are. “It’s okay, Mom. I don’t mind.” I try to catch her eye to reassure her with a smile, but she averts her gaze. If this is hard for me, just imagine what it’s like for her.

This is how tiny her life has become, unable to do some of the most basic things for herself. Things she’s done all her life. Now her daughter does them for her, just as she once did them for me. Our lives have merged in a way they never had before.

Then there’s my darling daughter. At sixteen, she has different bathroom challenges (we’re still trying to get the whole period thing under control, which isn’t easy for girls with special needs). The latest thing is that one of her medications is causing upset stomach, several times a week. We’ve talked to the doctors about changing it up, but it turns out this is the medicine that best handles her issues. So … three times a week she is asking me to pick her up from school, and most of the time I try to coach her through it: drink lots of water and eat a granola bar. Lay down for ten minutes in the nurse’s office.

No, she wants to come home. Three times a week on average. Of course I CAN’T let her miss that much school, and so I must be the Mean Mom. “Get a drink and lay down, honey. Take deep breaths.” Sometimes it works, sometimes it doesn’t. And when it doesn’t, there is H-E-Double toothpicks to pay when she finally DOES come home and lets me know exactly what a horrid mother I am.

*sigh* This, too, is love … She just can’t see it yet.

It all comes down to love, of course. Not the hearts-and-candy, Romeo and Juliet balcony scene variety, but the real life, rubber-meets-the-road kind. It’s meeting the other at their most personal and even (yes) somewhat embarrassing point of need. St. Paul said it best:

We hold this treasure in earthen vessels, that the surpassing power may be of God and not from us. We are afflicted in every way, but not constrained; perplexed, but not driven to despair; persecuted, but not abandoned; struck down, but not destroyed; always carrying about in the body the dying of Jesus, so that the life of Jesus may also be manifested in our body. (2 Cor 4:8-10).

Even the smallest, crappiest parts of our lives have meaning, seen through this lens. Each moment an opportunity to “do small things with great love,” as Mother Teresa so often said. Partly because it gives us a chance to love another creature (and no love is wasted, even on a dog, right?) But because it’s in these tiny indignities of life that we have a chance to strike a blow against pride, the father of all vices, until these earthen vessels of ours once more shine with heavenly light.

Jesus, we trust in you.

 

 

A Caregiver’s Psalm 23: Through the Valley of the Shadow of Dementia

sheep1The Lord is our shepherd, what more could we want?

He guides us to rest in electric recliners, to sip cool water.
When confusion invades, he bids me peace.
He diverts and reassures me as is needed,
And stays very close at the whisper of his name.

Though we traverse in the shadowy places,
where memories threaten to overwhelm and bring pain.
I will not fear tomorrow, for you give me strength.
You lift me high up above the turmoil, and help me
to see that one day we shall laugh together again.

We set the table together at suppertime,
and I pray that the pills do their job.
And that the Spirit will breathe peace
to fill in those rough places.

You fill up my head with love
and reassurance, and I smile
As once again we celebrate
being together as a family.

You are goodness and mercy,
and will never leave us, even at the hour of death,
When at last we will dwell in your house,
and all pain and suffering will be gone forever.

amen

Like Deckchairs on the Titanic … a Time for Comfort

stepping-stonesI’ve never visited anyone in a place like this before, let alone a loved one. It wasn’t until dad grabbed my hand that I realized my fists were clenched. His touch also prompted me to take a deep breath — turns out I wasn’t breathing, either. Odd.

Inside, a small scattering of residents were camped out in the common room, some sleeping, some watching T.V. Mom was sleeping on a sofa, and when I touched her shoulder, she opened her eyes, focused … and smiled. Quickly she sat up and hugged me, and I waited for her to say something.

For two hours, I waited. We communicated with an improvised game of charades. I stink at charades. It was painful, seeing her life reduced to a single room with a colorless bedcovering and bare walls. And in that moment, I knew what my task this week was going to be: a bit of beauty.

Now, I don’t kid myself that this is going to materially change the outcome of her situation. My other sisters have labored tirelessly to support my parents, helping them to make the medical and other decisions necessary to keep them afloat. This is the first time this year I’ve been able to make it down, for a variety of reasons. And though I’ll admit it may be a bit like rearranging deckchairs on the Titanic, at least it’s in my power to make sure those chairs go down spit-shined.

Her mother’s quilt. A lunch of homemade soup and bread. A good book (I chose one of mine, and another favorite, A Walk in the Woods by Bill Bryson.) And after lunch, we go back to the common room and sit at the piano, and she turns the pages in the old hymnal while I play song after song.

“She’s having a good day,” Dad said. “That’s two in a row.”

Please, God. Make it a week.

This is not your typical “Fun Friday” post, but somehow it seems appropriate to be publishing this in the typical timeslot. Because when it comes to family, “fun” isn’t always measured in roller coaster rides … and when it is, those coasters aren’t always the kind you find at Hershey Park.