Help! Snail Crossing Ahead

snail-3393204_1920
If you’ve ever been an adult caregiver, you know that finding and keeping reliable, personable at-home workers (especially CNAs) is one of the most challenging parts of coordinating care. While I know many caregivers go without home health care aides, I simply cannot manage the all the lifting and bending my mother needs, and even though I work from home I need to have someone keep an eye on her when I’m working in my office downstairs, to keep her alert and active as possible.

Care.com has been helpful — we found our best worker there. But the payroll service that is affiliated with them was tough for my elderly father to figure out, and so when our second home healthcare worker emailed me today to let me know that she was not going to be able to continue to work with us (she recently passed her boards and was making more money at the other job), I panicked. Mom’s Medicaid is supposed to go through in the next couple of weeks, and she’ll start a new program that handles morning routines and pick up/delivery. But how am I going to hire someone for just a couple of weeks?

The truth is, I can’t. We’re just going to have to hunker down and get through it. This will mean getting up earlier, starting the day sooner, and managing one more person’s daily routine at a snail’s pace. Then again, maybe it’s not such a bad thing.

Tonight’s reading, from Jesus Calling, seemed particularly apt. “Don’t rush about, or think too far ahead of what your next task will be,” I read. “Just focus on the task in front of you, and allow your will to conform with mine.”

Indeed. Isn’t that just the antidote to all worry and stress? To slow down, and stay in the present moment. Lord, thank you for the chance to practice this spiritual discipline again.

 

 

Advertisements

Are We F-I-N-I-S-H-E-D Yet?

3gen.jpg

Last night I found myself in the middle of a chaotic exchange between my teenage daughter, my elderly mother, and myself. My husband was gone, and both of them were unhappy with me for reasons that made no sense to me. (I chalked my daughter’s tantrum up to teenage hormones, my mother’s up to dementia. Mine, simply to the resentment of being squeezed into an impossible situation.) When will it end? I kept asking myself. When will the nonsense end?

It was tempting to hold a ginormous pity party for myself. Or simply to put my foot firmly down, and insist that it was “my way or the highway.” But what would that have done? It would have led to a stubborn standoff, each of us retreating to our separate spaces feeling resentful, bullied, and misunderstood. Instead I took a deep breath.

I think we need to lighten things up a bit — how about a game of Scrabble?” I pulled out the board I’d inherited from my maternal grandmother, a Scrabble shark if ever there was one. Mom’s eyes lit up … dementia or no, she can always give me a run for my money. And Sarah likes nothing more than to see her mother beaten, fair and square.

I drew my seven tiles, then made my play: d-a-r-n-e-d. Six letters, not bad. Double points.

I heard an intake of breath, then with slightly shaking hands my mom built on my final “d”: F-I-N-I-S-H-E-D. Using all her tiles, she put her score light-years ahead of mine. She caught my eye, the triumphant gleam unmistakable. “You’re FINISHED!” she crowed.

Not quite, Mom. But someday. Someday.

Life Juggles: Multigenerational Family Edition

When you’re living in a multigenerational household, sometimes it helps to know where those teenage “aces” are kept … especially on business trips. (Please pray they’ll hold on till Wednesday!)

Extraordinary Moms Network

3gen.jpgWhat do you do when your husband calls in the middle of a work-related event, in Chicago, and says that your mother needs help getting on her jammies, in South Bend?

Why, you ask to speak to your daughter, of course. “But she’s already gone to bed,” he hedges nervously. I can’t see his face, but I can read the subtext clear as day: “PLEASE don’t make me go in there!” (*sigh*)

“Put her on the phone, honey.” Noises and loud protestations ensue in the background. True to form, said teenager comes to the phone snarling. “WHAT?!”

“Sweetie,” I say through clenched teeth. “Do you remember the talk we had before I left that you needed to help get Mammie ready for bed while I’m gone?”

“I’m sleeping.”

Time for the big guns. “So… You want DAD to go down there and help her get dressed? How do you think Mammie…

View original post 162 more words

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.

 

 

When Mom Prays…

prayerTonight, I’ll be honest, felt like a big, fat fail in the parenting department. I’ll spare you the details (or perhaps it’s me I’m sparing), but at one point I looked into the snarky face of one of my children (ha) and thought (very loudly): “I don’t know if I can hold on another day.” Then I made the horrific mistake of opening my mouth and telling her exactly what I thought of her and her behavior. (Woops. Kind of gave it away there.)

My mother was sitting in the next room, and there is no way she couldn’t have heard what was going on. But she didn’t say a word. All through dinner she was quiet. Then I took the kids to youth group (“Yes, you DO still have to go even though you are 18, young man”) and came back just in time to hear of another complication that will be re-entering my life in two more weeks. *sigh*

Even after icing and heating it, my arm was throbbing like someone had set it on fire. But I made my way downstairs to put mom to bed and read to her. When we finished our devotional read, I asked her if there was anything she wanted to pray for. Her reply was immediate and simple: “I’d like to pray for you.”

My eyes were full of tears before she said the first word. I was a little afraid, truth be told, because there was no hiding the fact that I had been short, and mean, and cranky all day. Apart from the hour or so we spent in the Japanese garden in Mishawaka, and the hour I spent unconscious in my room afterwards. But you’d never know it as I heard the words fall from her lips, kind and gentle like rainfall.

“Lord, thank you for my daughter. Thank her for everything she has done for me, and how hard she works every day. Help her to listen to her body, and to be gentle with herself. Help her to know how much she is loved. Help us both to know which way to go in the days ahead, so we will be doing just what you want us to do.”

It’s been a long time since someone prayed for me like that. It kind of took my breath away. And suddenly I saw myself as my mother sees me — someone who is just doing her best with the hand she has. And someone who wants to do the right thing.

Later, as I sat there thinking about her prayer, I realized that this is probably what my daughter needs from me, too. Someone who will be gentle and kind. Someone who knows she is just doing her best.

“Lord Jesus, thank you for my daughter….”

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

60 Minutes on Dementia: The Slow Goodbye

60 minutes dementia

Last night I watched the 60 Minutes special about Mike and Carol Daly and their twelve-year battle with Carol’s Alzheimer’s disease that has eaten up the last years of their 53 year marriage. Dr. Jon LaPook has been journeying with them for the past ten years of that journey, beginning to interview the couple in 2008. You can watch it here.

While the physical and mental toll of the disease on Carol is evident in each segment, her husband’s physical and emotional deterioration was equally heartbreaking. As Carol struggles to recall her age and recounts the loss of her ability to make even a simple meatloaf, Mike’s undiminished love for this woman shines in his eyes. This is the woman he married, who has cooked and cleaned and taken care of him for over half a century. He won’t give up on her after all she has done for him. It would be unthinkable. “When we took our oath, it was for better or for worse. This is what I signed up for in the beginning.”

Years later, he admits that when he said those words to the journalist, she had only recently been diagnosed. The woman he loved was still there; now, ten years later, that woman is gone. And yet he stays, supported by home health workers and watching their life’s savings dwindle away to nothing. “I’m dying,” he says. And so it seems.

Watching this couple face such devastation so bravely, it occurs to me that there are worse things than death. Surely watching the love of your life diminish, leaving you the caretaker of a lifetime of memories as you face years of tending to the shell of the person he or she once was, falls in that category. And when the person who has the disease is the one who, like Carol, did most of the caretaking up to that point, the future looks especially bleak. Mike was once a New York City police officer … but this, this is infinitely harder. Ten days after their 53rd anniversary, he puts Carol in a nursing home — for her own safety, and because after twelve years, he realizes he has reached the end of what he can do. No doubt if Carol were aware of what her beloved husband was facing, she would have tried to ease his burden. But now it is too late.

Watching the program, I am grateful that Mom and I can still have conversations about things that matter. Moving her here from Georgia meant that the social and spiritual ties she enjoyed have been greatly diminished — she stays in touch with family and friends through a private Facebook page, where I post pictures and stories and they share their comings and going. She and her friends regularly exchange cards and notes and the occasional phone call. I tried taking her to a Baptist church here in town, but she insists she likes going with us to our church. We are trying, as best we can, to care for each other.

But Carol Daly is a grim reminder of what is ahead. The day will likely arrive when Mom will not remember who I am, or who she is. Now she can still dress herself and shower herself with minimal assistance; that won’t always be true, either. And she and my father have already seen the worst of it: the implosion of a marriage that lasted half a century. All that remains is duty and deeply cutting shards of memory. In some ways, it will be a severe mercy when those are gone.

My mother watched her father decline in a veteran’s hospital from Alzheimer’s; he was murdered in his bed by a roommate who smothered him in an effort to stop the snoring. Now it’s Mom’s turn, though I am praying that she will die here, with us. And one day … I have already let Craig know that I don’t expect him to be a superhero. “If this happens to me…” I tell Craig. Find a safe place for me. Then get on with your life. I don’t know if he’ll listen — Craig reminds me a lot of Mike Daly, to be perfectly honest. But at least we’ve had the conversation. At least he knows.

Thanks, Mike and Carol, for sharing your story — and for giving other couples a chance to benefit from your story. And for showing what love looks like when in its hardest, purest form.