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.

 

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Voices in the Night

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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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

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.

 

How a Caregiver Spells “R-E-S-P-E-C-T”

generationsThis week I’ve been thinking a lot this week about how family roles and dynamics change — and don’t change all that much — once dementia enters the picture. Navigating those changes takes a lot of energy, willpower, and … well, sensitivity. And to be honest, that last one does not come easy to me. I’m the kind of person who can organize and execute (pardon the word) complex events and projects. When it hits the fan, I can come up with a Plan B, C, and D quickly and without a lot of fuss.

But as I was reminded earlier this week, people are not projects or events. And they don’t always fit neatly into our plans — and have some pretty big feelings when you try to impose that plan upon them. When my husband and I decided to take mom out of the home she’d been living in and bring her to live with us, our entire family breathed a collective sigh of relief. Yes, it meant getting used to the cold, and not seeing her old church friends every week. And it meant going from the quiet, controlled environment of a memory care facility to the boisterous and often chaotic one here. But she seemed happy. “She is always smiling in the pictures you post on Facebook,” Dad commented.

It turns out, however, that our lawyer was right when he advised us, “Your relationship may change once you stop being the ‘rescuer’ who takes her out of the facility for the day and become her fulltime caregiver. She may turn on you … It’s not easy to grow old and lose your independence, even when decisions are being made for you by someone who loves you dearly.”

And he was right. This week I also discovered that other family relationships can be affected by the new arrangement as well. Hurts and regrets from the past, feelings from the present, and fears about the future can make for some uncomfortable and even painful interactions, no matter how much two people love each other. And when that happens, preserving the relationship means showing a little R-E-S-P-E-C-T.

  • Recognize that there may be underlying feelings, issues, and concerns that must be acknowledged on both sides.
  • Encourage the other person to tell you, privately and confidentially, what they are seeing, feeling, and observing. Hear them out, even if you don’t agree with everything being said.
  • Seek outside assistance and perspective from those who are familiar with your particular situation. Sometimes having additional information can help.
  • Positivity can be a gift when a relationship is struggling. Remind the other person of what she does well, and how she contributes to your life.
  • Email is generally not the best way to resolve conflicts. It reduces the ability to offer empathy, eye contact, and elicit human contact.
  • Compassion is as much about what you don’t say as what you DO say. Sometimes the most compassionate response is … silence.
  • Touch. I once heard it said there are three parts to every good apology … the words (“I’m sorry”), the acknowledgment (“I should have… shouldn’t have … please forgive me.”), and the touch (hand on shoulder, handshake, or even simple eye contact with a smile). That personal connection can be so important when someone is feeling sad, lonely, or upset.

What are some other ways you’ve found effective in showing those you love (particularly those with dementia) respect?

Traveling with Dementia

mom going to seattleThis week my mother and I flew to Seattle to visit my sister Chris. It was the first time in the Pacific Northwest for the both of us, and we both had bucket list items to check off: My mother wanted to see a whale, or the coast of Alaska; I dreamed of having tea at the Empress Hotel in Victoria.

Sunday Mom gets her wish. I got mine LAST Sunday, when I took the Clipper Ship Cruise to Victoria for the day. It was every bit as wonderful as I’d hoped it would be … and I hope Mom has a whale of a tale after our excursion, too.

The thing is, we almost didn’t make the trip. The day before we were to leave, Mom’s delicate internal workings kicked up a fuss, requiring several doses of Imodium to get it under control. I remember what her psychiatrist had said on the last visit. “Your mom may be getting to the stage where travel is too difficult for her. People may need to start coming to her, because travel can be disorienting for dementia patients.”

Mom insisted that she wanted to go see Chris. I think that, like many times in life, the prospect was infinitely more intriguing than the reality. However, we started early, left plenty of time for rests, and contacted the airport ahead of time so they would have a wheelchair and attendant ready for every leg of the trip. We got there safe and sound … and though she is sleeping more than usual, she seems to be having a good time. I know Chris and I are enjoying this quality time with her, too.

Here are some things we did that I think makes the difference between a “not bad” trip and a great trip.

  • Don’t over-plan the itinerary … and build in some down time for both of you. The first two days mom stayed with my sister in her apartment, while I took a trip to Victoria on my own. Bliss.
  • Don’t cheap out. Pay for convenience. We got super-cheap airfares on Delta (who is now my airline of choice for traveling with my mother). It cost extra to check bags, but I went ahead and ponied up so I didn’t have to drag everything we both needed through two airports. I also sent a package via Amazon with toiletry products directly to my sister about a week ahead of time. Worth every penny.
  • Keep routines as familiar as possible. Bring a favorite pillow, her favorite bedtime reader, her favorite tea. Let the host know what kinds of supports would be most helpful (commode, shower bench or handles, mattress pads, etc.). Remember to pack a “travel bag” similar to the one you keep in your own car with over the counter and everyday meds, extra pants and sweater, plastic bags, disinfecting wipes, a change of clothes, list of doctors and emergency contacts (including your own cell phone number), copies of medical card and ID, and snacks and water. Put it in the rental when you get to your destination.
  • As best you can, anticipate the unexpected. Tape a small card with your name, phone number, and medical condition information inside your loved one’s shoe, in case you are separated. When you arrange for the wheelchair, you should also alert the airline that you will be traveling with an adult with cognitive impairments, in case he or she has a breakdown at the airport.
  • Be prepared to pay a price for the adventure. Either during the trip or afterwards, you may experience some temporary setbacks (tears, blank-face, belligerence, or a flare up of other symptoms). Your loved one may be happy to see your host, but be uncooperative or demanding with you, her regular caregiver. I’ve learned not to take it personally, but to chalk it up to the loved one feeling tired or overwhelmed. Tomorrow is another day. Make the most of it.
  • Remember to have fun yourself. Have your favorite treat or drink on hand, and let (or even ask) the host family members or pay a sitter to take over some of the everyday chores or just sit with your loved one so you can take a break as well. Put Netflix on your cell phone to keep your loved one (and yourself) entertained during down times.
  • Slow down, breathe deep, and notice the little pleasures of life. It all passes so fast … and the best memories are often found in the things you didn’t plan.