Heidi Hess Saxton is an acquisitions editor and founder of "A Writer's Life" and "Life on the Road Less Traveled," resources for Catholic writers, caregivers, and parents of adoptive, foster, and special needs children.
At 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).
Today 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:
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.
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.
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.
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.
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.
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.
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?
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!
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.
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?
There are some things a mother will do for her teenage daughter that she wouldn’t do for anyone (or anything) else in the world. Sitting in the nosebleed section of the United Center in Chicago, waiting two hours for the Jonas Brothers to make an appearance onstage definitely ranks right up there. But while we were waiting (and throughout the concert) I found love. All around me, in different forms, I saw in other concertgoers expressions of love far more profound than I’d heard in any sermon or homily. It made me glad I was there.
It all started about an hour before the concert, when I spotted a gal in her late twenties (I’m guessing) frantically waving at a sixtyish (again, only guessing) woman slowly toiling up the nearly vertical incline of stairs. The older woman was shaking like a leaf, moving painfully from one step to the next as the usher waited patiently at the top to show her to her seat. “Here, Granny!” Ms. Twenty-Something called out. “I’m over here!” Seeing her grandmother’s plight, she got up and went to the older woman, grabbing the plastic bag and coat the woman had been carrying. It took another ten minutes to get her to the actual seat … which is exactly how long it took for the elder woman to have a full-on panic attack. Apparently she was afraid of heights, and this was too much for her. The trouble was, the only way was down. And that was unthinkable. The first aid staff came and tried to calm her down, but no dice. Before the first opening act made it to the stage, Granny and Granddaughter had left the building. VERY S-L-O-W-L-Y.
As Sarah sat, oblivious to what had just happened, I wondered at the love that grandmother must have had for her grown granddaughter, willing to face her greatest fear to spend time in the younger woman’s element. And I marveled at the love of the younger woman, who gave up the concert she most wanted to enjoy, for love of Granny.
The homily wasn’t over, though. A few moments after the two women left, the seats next to them were occupied by another pair, this time a Hispanic duo that must have been of legal drinking age, but looked younger. He wore double man buns on top of his head, with huge hoop earrings. She was a big girl, and had her hair piled in an updo, with earrings like his. Clearly there was no romantic interest between the two, yet just as clearly they were the best of friends: accepting, celebrating, just enjoying the fruit of friendship. As C.S. Lewis described this kind of friendship in The Four Loves, “Two creatures gazing together toward an object of mutual admiration.” At the first note, their excitement hit fevered pitch, as they held hands and jumped up and down, clearly glad to be alive, right there, in that moment.
But the best part of the homily came next, when a tall, lanky blond fellow and his date – a tiny little Latina spitfire – took the seats immediately in front of us. He was at least 6’6”, while she couldn’t have ridden most of the rides at Disneyland. She didn’t even come up to his shoulder. Then the headline finally arrived, and everyone stood up, screaming. (We had earplugs, thank God.) That’s when the real magic started. For as the first song started up, the girl raised her hands above her head and started jumping up and down, as though she was about to fly to the stage. He looked down, a bit mystified and with just a hint of a smile on his face. Clearly he was smitten. Next she started throwing her long, dark head of hair around, jumping like she had a spider in her pants. This time he took a step back, but his eyes never left her (I wondered if he was spotting her to be sure she didn’t tumble down the stairs.). He just stood, clearly entranced. Occasionally he’d look up at the stage when she pointed. But he couldn’t have cared less about the Jonas Brothers. His entertainment was standing right beside him.
This time, even Sarah noticed. “Wow. He really loves her, huh mom?” “Yes, I think he does.” “You think she knows?” “I hope so, honey. He seems like one of the good ones.” “Like Dad, you mean?” From the mouth of babes. “Yes, honey. Just like Dad.” My own husband wasn’t there, gazing down adoringly at me, of course. He was at home, watching my mother so I could take our daughter on this adventure. And he, my friends, is my Love Homily every day. Because “Happiness Begins” when yo u least expect it. And best of all when you’ve been sleeping beside it every night for twenty years.
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.”
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,