Dementia Pandem(ic)onium

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).

 

“What Can I Do?” a Note for Special Needs Grandparents

familyToday I got a lovely note from a reader of one of my books, who asked for advice about how to have a better relationship with her daughter and the daughter’s adolescent child, who has special needs (unspecified). Her daughter didn’t really open up to her about what life was like, and the reader asked, “What can I do? Do you have any advice?”

Here is what I said:

Here are a few things I wish someone had told me when I first got my kids, that this woman can pass along to her daughter:

  1. Raising special needs kids can be exhausting – both physically and especially emotionally. Get as much rest as you can, and take care of your body as carefully as you tends to your child’s. It’s easy to turn to coping mechanisms like alcohol and sweets – and they do feel good going down. Balance it out with salads and water, to have the strength to keep going. Embrace  opportunities to nap.
  2. Don’t forget to enjoy your child. Every challenge has its silver lining – and your child has gifts, too. It can be tempting to focus on the things they CAN’T do so you can find work-arounds and supports. But be intentional about seeking out and affirming the things they CAN do well, whether it’s singing or joke-telling or running or coloring. They need to hear this from you, because if it’s all about the “you can’t,” they will give up trying.
  3. Celebrate the small steps and successes. This is probably one of your biggest jobs of a grandparent. Cards, phone calls, outings, babysitting (parents need down time, too), little gifts, making cookies together – whatever ways you can connect with your grandchild, do it. Do it as often as you can. Show you are as proud of THIS grandchild as you are of all your others.
  4. Pray regularly for your daughter and her family. There is a loud voice going off in her head (if she’s anything like me) accusing her of all the things she isn’t doing for her daughter, all the things she SHOULD have done and didn’t, and all the bad choices she thinks she made, based on the information she had at the time. Catch her doing good for your granddaughter, and admire it out loud. Affirm her ability as a mother – both to her special needs child and to her other children (if she has any). She may not be able to see it sometimes, and she needs you to encourage her.
  5. Don’t offer advice unless asked. This is a hard one for parents. Special needs parents tend to be great researchers, and have reasons for doing the things they do that may appear strange or even neglectful to you (my parents couldn’t understand why I didn’t turn my son over my knee when he misbehaved – and there were several reasons for this, including it is illegal to use corporal punishment on a foster child). Twenty years later, the kids still struggle, but their teachers and others tell me they are good kids. Twenty years from now, no doubt your granddaughter’s “circle” will say the same thing. So continue to affirm the good you see her doing, and keep your mouth closed in the tough spots. Follow her directions carefully, as the mom. It’s okay to ask questions for clarification or understanding – but not to second-guess her mothering.
  6. Did I mention, pray for your daughter and her family? Pray for her marriage, too. In fact, offer a rosary every day for her and her husband. That is the one most important thing you could do.

 

I hope that helps!

 

Heidi

Praying Across America: Our Adventure Begins

Craig has a dream. He wants to see all 47 of the National Parks in the continental U.S. with me and whichever family members are around to enjoy it.

I have a dream, too. I want to see my husband fulfill his dream without giving up running water and indoor plumbing. Or beds with actual sheets and pillows.

Is that too much to ask? As it turns out … not at all!  See?

  • Jayco 212QB 2019

This little beauty will be ours on Friday. That and the vehicle Craig is picking up as I type this, large enough to pull it from state to state.

Would you like to come along with us? I’d love that. I’ve set up a special page here where you can follow along. Feel free to send us your tips (or a shout out for a visit, if it looks like it will be in your area … Did I mention this thing has a picnic awning?). We can only travel about 200-300 miles a day. So we won’t get there fast … but we will get there!

If you want to be sure not to miss an installment, feel free to add your email address to our newsletter, or friend me on Facebook. I hope to acquire a Facebook Live habit along the way. Fingers crossed.

St. Christopher, keep us in your sights as we are #livingthedream as we are #prayingacrossamerica. Our first trip begins in April!

On Making Plans

If all had gone according to plan, I would be arriving in Rome today with my husband and our friends Katy and Todd, to celebrate our 20th wedding anniversaries. On Monday we would have boarded a cruise ship, which would have conveyed us across the waters to the single most important item on my bucket list: a guided tour of the Holy Land. All the while we were planning it, my heart raced to think of what it would be like to walk in the footsteps of Jesus, to visit the place where heaven truly touched earth.

This was my plan. As it turns out, God had a different plan. And so, this year Craig and I hosted Thanksgiving for a small group of family and friends, while Katy prepares to take the last round of chemo. They had tried to get us to go on the trip anyway … but I had made a pact with God. “Just make her well. The trip will wait until we can go together.”

Of course, it’s a bit foolish to bargain with God, who I am sure sees how it all turns out, and even knows whether we ever get to make that trip. All our plans, seen on that scale, really don’t matter. One of the most important lessons we need to learn in this life is that there is precious little that we can control ourselves. That’s why it’s so important to learn to trust.

My Lord God, I have no idea where I am going. I do not see the road ahead of me. I cannot know for certain where it will end. nor do I really know myself, and the fact that I think I am following your will does not mean that I am actually doing so. But I believe that the desire to please you does in fact please you. And I hope I have that desire in all that I am doing. I hope that I will never do anything apart from that desire. And I know that if I do this you will lead me by the right road, though I may know nothing about it. Therefore will I trust you always though I may seem to be lost and in the shadow of death. I will not fear, for you are ever with me, and you will never leave me to face my perils alone.

Love’s Slow Decline

Maybe it’s because Daylight Savings ended this weekend. Or maybe the house has just been too quiet, with Craig and Chris gone. Or maybe it’s attending a baby’s first birthday party, and thinking of how much time has passed since that particular milestone in my own kids’ lives. Whatever it is, I’m in a bit of a funk.

Now, don’t let the title of this scare you. This isn’t about “falling out of love” or losing natural, motherly fondness for my teenagers. It’s not even about throwing in the towel with caregiving. I have so much to be thankful for, including work that (most days) I love, and extended family and friends who never miss an opportunity to show they care. Like I said, much to be thankful for.

But here’s a dirty little secret about middle age that I’m only just now realizing: Everything declines. Everything slows down. Everything gets … harder. And that doesn’t even factor in the specific realities of my particular situation.

There was a time when I enjoyed making the “grand gesture” — the epic love poem, the handmade gingerbread villages, the cross-stitched samplers that took months to complete. Now I’d rather pick up a package of Rice Krispy bars from Walmart and call it a day. I’m not proud of this … but I’ve reached a point where I need to own it, I think.

What do you think? Is it seasonal? Organic? (Went in for a stress test this week to find out why my chest keeps fluttering. Stress does that, the doctor says.) Need more exercise and fewer Rice Krispy treats? Maybe.

But if you can relate, feel free to give me your secret. How do you stop the decline?

Day 40: Twenty Years Later

j0438992

If you have made it this far in the “40 Day Challenge: 20th Anniversary Edition,” you discovered that I made it only a little over half-way before the previous edition kicked in.

There’s a reason for that. Though I didn’t originally intend to drop the ball, at a certain point I realized that I had to choose between getting the series done by Easter … and or take one for the team and admit that I didn’t have the bandwidth to do both this and everything else.

While perseverance is an important part of marital success, I’ve also found that finishing something just to say that you’ve finished it is not always a good thing. Whether it’s a trashy novel or a frost-bitten half-pint of Ben and Jerry’s, there are times when it’s really, truly okay NOT to persevere.

In twenty years of marriage, I’ve discovered that our capacities — whether physical, mental, or financial — change, and often shrink. At sixty-four, my husband’s energy stores quickly become depleted when he attempts to work several twenty-hour days in succession. I’ve found my sense of humor grows equally in short supply when attempting to be everywhere and do everything at once.

For both of us, when we try to be and do too much, one of the first things that suffers is our relationship. He becomes loquacious, I become irritable. We retreat to opposite ends of the house, instead of meeting in the middle (after the kids and my mother turn in) for a cuddle. And don’t even get me started on what this does to the sex life.

Middle age is a time of transition, a time to dig deep in the storehouse of wisdom that we’ve acquired over time and with experience. So, in closing, I’d like to offer this one last “Prayer of Abandonment: Twenty-Year Edition.”

My darling,

Let us continue to abandon ourselves, come what may,

not knowing what the future holds, but confident in the One who does.

Let us be ready for inevitable change, and lingering struggles.

Let us say “I do” to each other, over and over and over again.

I offer you all that I am, and all that I have,

to claim or ignore or appropriate, as needed.

Let the love that we have continue to grow,

and to reflect in some small way the Perfection

to which we try to surrender ourselves, body and soul,

until at last we see the Glory.

 St. Charles de Foucauld, pray for us.

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.