Tag Archives: dementia

Love is a Funny Thing

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Author’s Note: The other day I came across a dozen “drafted” posts that I’d written on the fly over the past few years (this one from late April, 2018), and I decided to finish them up and send them out into cyberspace for your enjoyment. So if they seem a bit … I think the word I’m looking for is “anachronistic,” you’re right! But sometimes the Life Less Traveled takes a detour, and that, too, has made all the difference.

To say that my life has changed drastically in the past six months since my mother has joined our household would be putting it mildly. Adding an elderly dementia patient to a house like ours, with two work-from-home parents and two special-needs teens and a couple of VERY spoiled dogs (one of whom cannot sleep at night unless her butt is planted firmly in my armpit) has been a real eye opener.

Sarah, circa 2007

But it’s also had some real bright spots. And that is the truth. Not just the “You’ll be so glad that you had this time with her when she dies” variety. Though there is that. But there are other perks as well.

I’ve discovered love is a funny thing. The same fashion-forward teen who can’t look in my direction without a snarky comment about my appearance will ooh and aah over her “Mammie’s” new hairdo. It lets me see a kindler, gentler side of her I’ve been missing.

Another member of the household (who shall remain nameless) who emerges from his room (oops) only for Doritos refills will make his way to her little apartment in the basement, just to make sure she is up from her nap in time for dinner.

What I’ve loved most, though, is that having mom with us has given me a fresh appreciation for my mother’s gift for friendship. Her church friends in Georgia haven’t written her off since she’s crossed the Mason-Dixon line to go live in the frozen winterland of northern Indiana. Even though she doesn’t write, doesn’t call, doesn’t send cookies anymore … they continue to love on her in every way possible: on the special Facebook group I’ve set up for her, where we’ve heard from people from my childhood who had passed out of my world years ago. In cards and notes and care packages. And yes, through the occasional phone call on my cell that makes my mother’s face light up when she hears a familiar voice on the other end.

It makes me wonder who will still be calling me thirty or forty years from now … How about you?

#PrayerStory A Matter of Trust

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Trusting God for three generations… My mother and daughter and me, four years ago.

Like many women my age, I am a “sandwich mom,” constantly struggling to juggle the demands of a vocation with more layers than an onion. One day my husband looked at me and said, “I feel bad about this, and I know it’s crazy, but some days I see you cutting up your mother’s dinner and wonder, ‘What about me?'”

I understood exactly what he meant, and it broke my heart. My husband and children have not had my undivided attention, and have dealt with the associated stress of caregiving, for going on four years now. I am so grateful to Craig, in particular, for shouldering his part of her care without complaint. But I understood his feelings of neglect.

He wasn’t the only one feeling that way. My kids were also letting us know, in no uncertain terms, that this was stressful on them as well. But I couldn’t bear the thought of a nursing home for my mother. I had taken her out of a place in Georgia that was run-down and depressing, where residents were simply marking time until death. I wanted better for her.

Now I wanted more for the rest of us.

Shortly after Mom arrived at our house, we enrolled her in a local daycare program for adult Medicaid patients, St. Joseph PACE. They provide medical care, daycare services, social services, transportation, and other services that allow seniors to live at home for as long as possible. This week, Mom’s social worker Ashley recommended to us an alternative to a nursing home: a group home run by a local couple from Rwanda. Nervously we went to look at the place … and it was beautiful. Warm. Friendly. Clean. And Mom was laughing and chatting with the other residents in no time.

We move her in next weekend. Mom will have the quiet and independence she craves. And I can start caring for the other parts of my life I’ve been neglecting. Including the prayerbook for mothers I’m compiling for Ave Maria Press for Fall 2021 — nearly 100 women sharing their favorite (or original) prayers and prayer stories. At times like these, it’s important to share all the ways God is at work in our homes and in our world.

If you don’t already, please sign up to get my updates delivered to you by email. Lots of us are avoiding social media these days … but it’s also a great way to share messages of faith!

#GodIsInControl. #PrayerStories. #SoThankful

The Long Good-Bye

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My parents and I in 2016.

Today’s first reading, on the Feast of All Souls, is comforts me today. At a time when both my parents are experiencing the physical and mental frailties of old age, this beautiful passage is reassuring: Better days are ahead.

The souls of the just are in the hand of God, and no torment shall touch them.

They seemed … to be dead; and their passing away was thought an affliction,

and their going forth from us, utter destruction. But they are at peace.

For if before men, indeed, they be punished, yet their hope full of immortality;

chastised a little, they shall be greatly blessed

because God tried them an found them worthy of himself.

Wisdom 3:1-3

As a Catholic, I believe in the reality of purgatory. As a daughter who has walked with my mom through the slow goodbye that is dementia, I am confident that this life, too, can be a kind of refining fire. It took her more than seventy years for her eyes to be opened to the beauty and truth of the Catholic faith … but when at last she saw it, she embraced it of her own free will. And in that moment, a long-standing rift between us was healed.

So on this feast of All Souls, I am thankful to have experienced this miracle. And I am grateful that God saw fit, in the case of my family, to begin the healing in this life, rather than the next.

An Essential Caregiver Resource: The Caregiver’s Companion by Debra Kelsey-Davis and Kelly Johnson

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the-caregivers-companion300dpiAt six this morning, I heard it: the whirr of my mother’s chair lift coming up from the basement. She was fully dressed, and had her bags packed, which means she must have been up since at least three.

“It’s time to go to the train. Judge says I have to go to Vermont.”

That damned Judge — the one in her head, who keeps giving her these untimely messages — is getting on my last nerve. Now, some experts will tell you that when someone with Alzheimer’s or other forms of dementia has hallucinations like these, it’s better to go with them to their world, rather than force them back to yours. These experts have never dealt with a pandemic, so I try to find middle ground.

“Remember the quarantine, Mom? The governor says we all have to stay put … the planes and trains aren’t even running right now.”

“Your Dad says they want me there today. Then it’s off with my head.”

Her head is down, her expression angry. She is waiting for the next move. In this case, distraction. Time for the big guns.

“You know, Mom, we’ve been cooped up here for a few weeks now. I could really go for an Egg McMuffin. How about you? Would you like to go to McDonalds with me? We could wear those fancy masks I’ve been making, and take Sarah with us.”

“And orange juice? And hash browns?”

“Sure. Let’s get a little fresh air. We can’t go to the train because of the quarantine. But if we wear our masks, we can do the drive-through at McDonalds.” And, thanks be to heaven, she nodded her head and grabbed her cane.

I grabbed the car keys and followed. That Egg McMuffin was going to give us a stay of execution.

Has your loved one been experiencing a greater number of auditory or visual hallucinations in the last six weeks, since the quarantine began? How have you been coping? My friends Debra Kelsey-Davis and Kelly Johnson over at “Nourish for Caregivers” are putting the finishing touches on their new full-color journal, “The Caregiver’s Companion: A Christ-Centered Journal to Nourish Your Soul,” available in August through Ave Maria Press (you can pre-order the book here).

 

Dealing with Dementia: Don’t Forget Fun

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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.

 

Life Behind the Wheel

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night driveCall me crazy. Just don’t call me for carpool.

I’ve got two non-driving teenagers (well, one has driven long enough to wreck two cars), a frequent-flying husband, and a mother who believes with all certainty that a black-robed judge is going to show up at the door one day and “do away with me.” (Though what my good Christian mother could possibly have done to deserve this staggers the imagination.) In any event, until our Chiweenie successfully passes her driving test, it’s pretty much me driving everyone in the house where they need to go: work, therapy, doctor’s appointments, choir practices, grocery shopping … you name it, I’m driving there.

Now, some extremely devout and well-organized women I know use this time for prayer or some other high-minded pursuit. And yes, I occasionally flip on Catholic radio or plug in a little Matt Maher when I need a little faith-lift. The trouble is, no sooner do I get behind the wheel than my brain kicks into high gear and starts spitting out two dozen items for my to-do list that I am quite certain will be lost if I cannot write them down. Items for the shopping list. Phone calls that need to be made. Stops I need to make. These things whirl around and around my brain like it was Midnight in Menopauseville. You know what I mean.

And then there is the never-ending, nails-on-chalkboard prattle coming from my wide-eyed daughter, who seems to live for the moments she can make steam escape through my ears or yell at a pitch high and loud enough to unnerve livestock. “I can’t wait until I’m eighteen so I can get a tattoo … no, a piercing. No, both. And dye my hair black, like a Goth. And did you know that my boyfriend D____ (her current love interest) kissed me in the hallway? Well… he almost kissed me. Like, he looked like he was going to …”

Yes, I know she’s just looking for attention. Yes, I know this is what teenagers do. Yes, I’m sure I drove my mother crazy, too, and this is just God’s particular brand of cosmic justice. And so, I pay it forward the same way my mother did, with a benevolent mother’s curse: “One day may you be blessed with a child just like you.”

The thing is, she’s really not. And I know this because in her more lucid moments I see my mother look at my daughter when she’s raging against The Mom, and clearly she thinks she wandered into Comedy Land. Her eyes light up with barely suppressed humor as she watches her granddaughter spout off at me, and me trying to keep from blowing my ever-loving gourd. She doesn’t say anything. Certainly doesn’t try to take my side about ANYTHING. She just sits there and chuckles. Dammit.

Suddenly I feel like that old battleax Nurse Ratched in One Flew Over the Cuckoo’s Nest. So I tell myself it’s time for a Mommy Time Out, pour myself an Arnold Palmer, thank my children for “volunteering” to do dish duty, and turn on Jeopardy. Because I have yet to figure out how to deliver two children at opposite ends of town to start work precisely at 9:00 and still make it to the office dressed in something other than pajamas to meet my new boss. I haven’t the foggiest idea how to extricate the Judge from my mother’s cognitive processes. But by Jove, I’ll take “Weird Stuff Nobody Knows but an Editor” for $1000, Alex.

And how’s your week going?

Voices in the Night

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Craig is gone this week on business, and Chris and I have been spending some quality time in the evenings. Around midnight last night we were watching Medium (the Hulu reruns are his new favorite program) when we heard a slow thump … thump … thump coming up the stairs.

(Now, this is exactly NOT the program you want to be watching at midnight when there is a thump, thump, thumping going on).

“I think it’s Mammy,” said Chris, peering over his blanket and not moving a muscle to investigate. (Man of the house, indeed.)

So I got up to check and, sure enough, my dear mother had crawled halfway up the staircase, pushing her box fan ahead of her. “Mom! What are you doing?” I chided.

fan“You told me to bring the fan up here,” she insisted. “I heard you.”

Now, of course I had done no such thing. But I have learned over the past two years not to argue with the voices. Gently I extracted the fan from her grip and put my arms around her, helping her up the last few steps. “Mom, let’s get you back in bed. It’s not safe for you to be climbing these stairs without your chair. Let me get it for you.”  And that is what we did.

Later that night, I got to thinking of the story of Samuel (1 Sam 3:1-11), who heard God’s voice and thought it was that of his guardian, Eli. The elderly priest was blind and had failed as a father with his own two godless sons, but he saw in this young, impressionable boy a chance at redemption. After Samuel awakened Eli twice, insisting that he had heard the priest call him twice in the night, the old man wisely advised the boy, “Go to sleep, and if you are called, reply, ‘Speak, Lord, for your servant is listening.'” (vs. 9).

And the boy did. And God spoke again. And when young Samuel heard what the Lord had to say, he was afraid to give his mentor the message: that the Lord had turned against the house of Eli, and was utterly condemning them. And yet, Eli’s unexpected response must have reassured him: “It is the Lord. What is pleasing in the Lord’s sight, the Lord will do” (vs. 18). And Samuel became a great prophet.

Now, I’m not sure exactly what it is God is trying to say to me through this incident with the fan. Maybe it’s something as simple as, “Make better media choices, both for yourself and as an example to your kids.” Maybe it’s a warning that Mom is going to need closer supervision at night (the progression of dementia can cause nighttime hazards). Or maybe it’s just a simple invitation to spend less time watching television and more time listening for that still, small voice in the night.

Speak, Lord, your servant is listening.

Unhand the Cheerios…

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cereals in basket

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Both kids were scheduled to work this morning, so we went as a family to the five o’clock Mass at St. Pius. It was the first time we’d gone there together — gorgeous church, lovely organ music, and the homily was short, sweet, and … a little crunchy.

The priest observed that every parish in America sweeps up at least a pound of Cheerios each weekend — a kind of divine detritus (my words) left behind by parents of small children who just want to be able to pray for five minutes. Then one day as he was watching his two-year-old nephew grow frustrated over trying to play with a truck with two fistfuls of Cheerios, he said, it made him realize that Cheerios are the perfect metaphor for human desire. “God holds out the truck, and we won’t let go of the Cheerios long enough to take it. But that’s what God is asking … he wants you to let go of the Cheerios,” he explained.

I looked at my mother, sitting so intently next to me. It has been only about three weeks since our priest gave her the anointing of the sick while she was in the hospital with pneumonia — for her, it was a sacramental windfall that included first confession, first Eucharist, confirmation, and last rights. Thank God, she recovered … and has been eager to go forward to receive Jesus each week. Her eyes just light up with so much joy, you never would have guessed what a miracle it is that she was standing there at all.

I’ll spare you the gory details, but suffice it to say that I was brought up believing Catholics aren’t “really” Christians. So to see God work it out so that my mother goes forward to receive Jesus each week is a little … strange. I’d had two aunts (one on either side of the family) who had married Catholic boys, and it didn’t end well.  (Interestingly enough, one of them — my namesake — wound up tending to my grandmother in her later years. I so admire her.)

All I know is that, for the past two years, mom has been going to church with us each week … and remaining in the pew as the rest of us went up. She would say all the prayers, and sing along to all the hymns, and listen intently as our Nigerian priest would break open the Gospel. At night I would tuck mom in and read to her from some of the books I’m currently working on, and one day she pulled out one called Catholic and Christian by Dr. Alan Schreck … and we started reading THAT.

Next thing I know, she’s telling Fr. John that she wants to be a Catholic. I’m not sure exactly why. Maybe it’s because her Catholic daughter rescued her from memory care prison. Maybe it’s because I refused to give up praying with her for her marriage. Maybe it’s because … well, maybe it’s because we were both ready to let go of the Cheerios, and hold out our hands for whatever God wanted to give us.

And so we did. And you know what? It was even better than we thought.

“A Walk in the Woods” with Mom

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Every night before she goes to sleep, I read to Mom. Sometimes it’s a devotional like Jesus Calling or a chapter from her Bible. Sometimes I give her a “sneak preview” of one of the books I’m editing. (She particularly liked Forgiveness Makes You Free, by Fr. Ubald Rugirangoga.

If you liked the movie, read the book … Heck, even if you DIDN’T, read it anyway!

This weeks’ book du jour is from my favorites shelf, A Walk in the Woods by Bill Bryson. For those who haven’t yet stumbled on this one (and who missed the movie), it’s a delightful romp about two middle-aged men who set put one spring to walk the two-thousand something miles of the Appalachian Trail.

Now, my mother and I have some history with this particular trail. When I was a Junior in Girl Scouts, and my mom was the troop leader, she and her friend decided to take a group of us to High Point State Park to practice our trail marking skills. She divided us into three groups: The first group was to mark the trail, second to follow the marks, and the third (also presumably following) would clean up as they went. We would all meet back at the car for Smores before heading back to the school parking lot to our parents.

Our third group fared best. When the second group managed to erase the trail marks in their eagerness to read the signs, the third group merely followed the path back to the car. An hour later, when the other two groups didn’t show up, the leader decided to take her group back to the school so their parents wouldn’t worry. Meanwhile, the first group had missed the park’s markings, and took a “shortcut” that put us on the Appalachian Trail. Two hours later, my mother was standing on the side of the road with eight middle-schoolers (group two had caught up with her), miles away from where we should have been.

This was long before cell phones (or Amber Alerts). As dusk fell, we emerged from the woods and found ourselves on the side of a (relatively) busy highway. And so, when a bearded gentlemen in a Volkswagen bus pulled up and offered us a lift back to the park … I guess some angels do wear flannel.

I don’t remember what happened after that, other than (a) we arrived back in the school parking lot three hours after we said we’d be there and (b) it was the last troop outing I remember my mother leading. Apart from missing the smores (the greedy guts in the first group ate them all), we were none the worse for wear. It had been an adventure, and one of the few clear memories I still have of my scouting experiences. Not all bad, right?

So … this week as Mom and I read this Appalachian Trail adventure,  and laugh over the antics of Bill and Katz, I’m happy to find that Mom is alert and seems to be enjoying it more than some of the other books I’ve tried. “I just love the Appalachian Trail,” she murmurs.

So do I, Mom. So do I.

Night Blessings

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Are you currently the primary caregiver for a parent or other loved one? Would you like a safe place to go for prayer or just to vent? I’ve recently started a “Catholic Caregivers” site on Facebook … It’s a closed group, but you are welcome to join!

These last few days have been sad ones for Mom. Lots of tears and confusion. She keeps writing and writing, but it only increases her frustration. She doesn’t know how to explain the conflict within her, and she is fighting a battle against accusers none of us can see, let alone help her to resist.

Last night as I tucked her I could see that she was on the edge of tears, and I wanted so much to be able to ease her mind. So I laid down beside her and sang to her some of the songs she sang to me as a little girl. As she grew calm, I decided to try a little ritual that I adapted from something that I experienced for the first time as I prepared to become Catholic, when my sponsor blessed each part of my body in preparation for the journey ahead of me — into the Church.

Now, my mother is a lifelong evangelical Christian, but she is familiar with the little rituals of Catholic prayer, and I hoped that this would help to comfort her. So I made the sign of the cross on her forehead, and said, “I bless my mother’s mind. All her life her brain stored songs and stories and wisdom that she shared with her daughters. Now there are snarls and worn places that are hurting her. Please heal her mind, Lord Jesus.”

Then I blessed her eyes and said, “I bless her eyes. She looked out at the world and saw God’s beauty, and looked at me and saw God at work in my life. Please help her to see that she is a beloved daughter of God.”

Then I went on blessing the other parts of her body, ending with the feet. “I bless her feet, shod with the Gospel of peace. She traveled all over the country to take care of her family, and never complained. Please ready her feet for that final journey, that she would walk with you always.”

Mom didn’t say anything as I left, but kissed me back as I bent down to say goodnight. I think the darkness has closed in around her, and I’m not sure she can hear truth from my lips right now. But I know her angels are taking those blessings to Jesus. And I believe that he will be able to reach where I cannot.

Today the chaplain at her daycare asked us all to come in so he could give mom a “certificate of innocence.” He told mom that he knew she was worried that someone was wanting to bring her to court over something that had happened years ago. He had checked, and everyone has agreed that she has done nothing deserving of standing trial. So he was giving her the certificate to remind her that she is not guilty of any criminal wrongdoing. It’s a tangible reminder that she is where she belongs.

I don’t know if either of these things are going to have the desired effect. When you are dealing with a dementia patient, so much is happening beneath the surface that he or she may never be able to articulate, let alone resolve.

But God is merciful. And he loves his children — even the weak and confused ones. For the weakness and confusion is temporary. Shadows of the glory to come.