When Love Falls: The Dementia Chronicles

close up of splashing water

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I was barely awake, my eyes still closed, when I heard her crying. At first I thought it was a dream, but as I became more and more alert I recognized my mother’s voice, her sobs loud enough to reach the baby monitor across from her bed.

Quickly I got up and went downstairs, and found her lying face-down on the floor, bleeding profusely from the nose. She had managed to get herself completely dressed, including shoes, so there is no telling how long she’d been up. Or down, as the case may be. “Hold on, Mom. I need to get help.” I called the case manager, who told me to call 9-1-1. Then I yelled for Craig. Somehow we managed to get Mom into a chair. “Have someone put away any animals, get her list of meds, and wait out front for the ambulance” the operator told me. And get dressed, I added to my mental list.

As I scurried about, Craig kindly asked her how it happened. “I just didn’t want to be a burden any more. You already do too much,” she protested.

“But Mom,” I chided, as gently as I could. “You are family, and we’re glad you’re here. We want to keep you safe!”

At the hospital, they took x-rays and found that she had a “small break” in her nose, but that no serious damage had occurred. So we took her home and let her rest, and I wondered what more I needed to be doing that I wasn’t already doing.

It’s funny, and yet it’s not, that this is a question very similar to those I’ve asked myself in the past about the kids: What more should we be doing? How could I have let this happen? And my personal favorite: If I just love enough, shouldn’t everything be okay?

It’s a hard pill to swallow, that even the best and most loving caregivers won’t get it right 100% of the time. There are going to be times when … well, when it feels like love falls down on the job. Why? For the simple reason that loving someone is not the same as controlling him or her. We can choose our actions, but not the consequences.

I can wrap my loved one (young or old) in bubble wrap and bed restraints. But that is not love, though it is the only way to ensure their safety 100%. But love? Love is a lot harder. Love is what makes you stand with them after the fall, and help them find their footing again.

It’s probably the hardest lesson in caretaking, figuring out where my will should end, and theirs begin. Giving Mom room to stay as useful and self-reliant as she can, even if it means that sometimes we fall together. And to teach my children the same, so they don’t look to me to do for them what they should be doing for themselves.

Today I was reminded that, even at its best, sometimes love will fall.

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Help! Snail Crossing Ahead

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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.

 

 

Are We F-I-N-I-S-H-E-D Yet?

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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.

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.

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…

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One Day at a Time

sandwichgenerationcollageIn a beautiful post “Caregiving: Wisdom for the Sandwich Generation,” Christian blogger Michele Morin (Living Our Days) writes about being startled awake one night and needing to do a “balance check”:

Exhaling in the dark, I realized . . . no.  I had been dreaming.  She’s not here anymore.  She’s walking in safety now, through hallways with sturdy rails, assisted by M.A.’s and C.N.A.’s and an alphabet soup of helpers who tend to her every need.

In another article at The Perennial Gen,” she writes of “New Mummy Guilt: Putting Your Parent in a Care Facility.” This is a story I can relate to, in reverse: Watching my mother die by inches in the dark, squalid memory care facility goaded me into bringing her home to live with us. Like Michele, I had hoped that it would redeem the hard places of our relationship (and thankfully, it has). But it also involved navigating the “wilderness of self-doubt, second guessing, and impossible choices.” Can you relate to that, too?

In the days following his release in September 2017, Fr. Tom Uzhunnalil spoke of two things that kept him sane during that nightmarish eighteen-month period following his capture during the ISIS attack of the home for the elderly run in Aden, Yemen, in which twelve souls (including four MoC sisters) perished. In a Catholic Herald article, the Salesian priest attributes his peace of mind to the Eucharist (and spiritual communion once the hosts ran out) and the words of a Christian hymn:

“One day at a time, sweet Jesus … Just give me the strength to do every day what I have to do. Yesterday’s gone, sweet Jesus, and tomorrow may never be mine. Lord, help me today, show me the way, one day at a time.”

This song is the heartbeat of most mothers, I think — but perhaps especially those of us in the “sandwich generation” who must do what seems impossible, humanly speaking, every day. This is the secret, I’ve discovered: Just taking it a day at a time, and not worrying (yet) about tomorrow. As Jesus wisely pointed out, “Do not worry about tomorrow; tomorrow will take care of itself. Sufficient for a day is its own evil” (Matthew 6:34).

When you are walking the dark, disorienting halls of dementia with someone you love, this verse needs to be stamped upon your heart. Today is enough — enough to capture the joys and sorrows, the humor and the tears. In Jesus Calling, the little devotional mom and I read each night before bed, I was reminded last night, “Live in the present, for that is where you will always find Me.”

I’d encourage you to check out Michele’s blog, which is full of encouragement for adult caregivers. I’m adding it to the blog roll so you can find it easily. God bless your day!