It’s official. We have moved. Had a buyer for our house in two days, creating a logistical nightmare of epic proportions as Craig and Chris labored to find a place — ANYplace— to put boxes and boxes of a lifetime of family.
Then the snow started.
Then the septic tank started leaking in the basement.
Long story short, it had been an adventure of a lifetime. It reminded me to be thankful for things like flushing toilets and hot showers and, well, if I ever find my crockpot I will be thankful for that, too.
Three days in to 2021, and gearing up for the first real “work week” of the new year. Feeling a bit curious about what is in store, I signed in to Jennifer Fulwiler’s “Word of the Year” website, and found three words in quick succession.
Journey. Rest. Quickly. Hmm….
“Journey ahead. Rest (quickly), while you can”? or
“Journey to a place of rest. Do it now.” or
“There will be rest and the end of your (quick) journey. Hang in there.”
I suppose time will tell.
Tonight I hopped on the stationary bike to watch a Bee Gees documentary and the first episode of my favorite home improvement show, “Home Town” with Ben and Erin Napier. I was also taking up Resolution 1 for this year: at least 30 minutes of exercise a day. Resolution 2 is from my latest audio book, Codependent No More: by Melanie Beattie: Stop nagging. Take control of your own life. Practice better self-care.
That sounds like a journey worth taking, wouldn’t you say?
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.
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.
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.
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.
If you give a mom a cookie, she will sit in a chair and try to eat it in peace.
As soon as she sits, she will look in the kitchen and see Ravenous Teen left the milk on the counter. Again. So she sets her cookie on the table and goes to the kitchen … Where for the next ten minutes she wipes counters, empties dishwasher, and puts dinner in the crock pot. And, yes, gets herself a glass of milk. With a shot of Bailey’s.
The scent of Bailey’s inexplicably reminds her that she left of load of laundry in the washer downstairs … yesterday. Hoping against hope that it has not turned, she goes downstairs to the laundry room and trips over eight piles of clothes that Messy Teen has transferred from the floor of his room to the floor of this one. Muttering darkly under her breath and rubbing her stubbed toe, she rotates the wash and calls Messy Teen to fold his own danged clothes and take them upstairs. Now it is his turn to mutter darkly under his breath. Mission accomplished.
Exiting the laundry room, her eye falls on her desk, the laptop hopefully poised for action. Sorry she left her cookie (and the Bailey’s milk) upstairs, she sits down and proceeds to grind out 27 email responses, 4 tip sheets, and a proposal review before her tummy rumbles so loudly it scares her. And she remembers she hasn’t had anything to eat today but a few cookie crumbs. And her granola bar stash was discovered by Ravenous Teen 2 last week, and she hasn’t had time to restock. So back upstairs she goes … in time to see her elderly mother’s daycare bus pull up to the drive. Rats. Rats. Rats.
Helping her mom inside, then to the bathroom and back to her chair for snack time, she narrowly escapes slugging her husband when he comes down and asks with great feeling, “What’s for lunch?” Desperately she looks around for a teen to take over sandwich making responsibilities, and sees that Sneaky Teens heard the sound of work and barricaded themselves in their rooms, playing music loud enough to shake the house and wake the dead. “Just a minute, dear.” And she spots a bit of reprieve on the table, which the dog appears to have nibbled around the edges. “Here … have a cookie.”
This 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?
If you give Mom a cookie … She’ll want another one to go with it. Some days, that’s her idea of a balanced diet: one cookie in each hand.
Not always, though. Most days she’s pretty careful to eat and drink like someone with a history of diabetes. But some days, dementia wins and the child in her comes out to play.
I’ve decided that caregiving for someone with dementia is a lot like parenting a toddler. Some differences, of course … I would always want to treat her like the adult she is, and give her as much say in the details of her life as possible (clothing and drink options, etc.) But this is a marathon, not a sprint: To some degree, it’s important to manage the chaos. Especially since I have two chaos-generating teenagers as well as a husband to think of. And the dogs. Oh, Lord, the dogs.
Some of the same lessons I learned (a bit too late, in some cases) while raising Chris and Sarah have come in handy for taking care of mom:
Enjoy the moment. When they were little, I would attempt to work when they were on the floor playing. In retrospect, life would have been much sweeter if I had joined the fun more often, instead of powering through. Now, with Mom, I move at a slower pace — but, thanks to the kids, I’ve learned to stop fuming and to reset my internal clock. I may not get as much done — but I’m enjoying it more.
Think twice, act once. Thinking through the steps of a task while changing, bathing, or transporting her saves wear and tear on the body from lifting her or getting myself on the floor (or up again). Gathering everything ahead of time – lotion, clothes, socks and shoes, wipes and bags, etc. – and putting them in arm’s reach can save a lot of wear and tear on both of us.
Go-Bag at the ready. When the kids were little, I’d never go anywhere without an emergency bag (diapers and wipes, sunscreen, change of clothes, snack and juice box, activities, emergency Diet Coke and clean shirt for me). Add a few tabs of Ammodium and an emergency set of morning meds, it comes in handy now, too.
Morning and evening routines make for a better day. When the kids were little, doing the same things in the same order in the morning and again at night was our best shot at a good night’s sleep. Now they are MOM’s best chance. Change into nighty, warm socks, tuck in with a kiss, soft music while I read to her, lights out. After about 10 minutes, gentle snores come over the monitor. All is well. The next morning, turn on a gentle light and a five-minute warning before getting her up helps her to be relatively alert and steady on her feet.
Soothing music and baby monitors. As a new parent, I discovered that the monitor was as much about my peace of mind as their safety – which holds true for the elderly, too. When she seems especially agitated, my piano music or a few Gospel favorites can soon get her humming along.
Encourage independence as much as possible. At bathtime, a sitting bench and detachable and/or adjustable showerhead allows her to do much of her own personal care and preserves her modesty. I’ve also learned to give ample time for her to attempt to dress and undress herself. Just as when they were little, it would be much simpler and faster for me to do it for her … but faster is not always better.
Anticipate changes. Ten years ago, Mom could whip up a double batch of cookies faster than you could say “oatmeal chip with walnuts.” Now I do the mixing and oven work, and she scoops the dough onto the trays. Once I made the mistake of leaving her with my teenage daughter to finish the last few pans … and Mom burned herself badly. I would never have left a toddler alone near the stove. This incident taught me the hard way that I can’t leave her, either.
Bribes can be your friend. As every experienced parent knows, the occasional bribe is a useful tool in the parental tool belt. The same is true for caregiving. Mom will do almost anything for sweet potato pie. I have four of them in the freezer, just in case I need to hack off a slice to make the pills go down.
Beware diaper butt syndrome. It’s hard to take advice from someone whose butt you once diapered. Even with dementia, parents sometimes need to hear the tough messages from others (doctors, pastor, hired caregiver, friends) in order to let it really sink in. When Mom refused to take her meds because of her auditory hallucinations, I made an appointment with her doctor, who wrote a letter I could post on the refrigerator that reads: “Sandy, as your doctor I’m telling you to listen to your daughter. She is in charge. Take all your meds every day. Drink lots of water. Keep eating to keep up your meds. If you do these things, you will stay as healthy as possible, as long as possible.” From that moment, she has not missed a pill.
This year, with Mom helping with the baking, I decided to dig out the old family receipe files and mix things up a bit from the tried-and-true gingerbread and candy cane routine.
In addition to the traditional banana bread (to use up the sour cream from the sugar cookie recipe I usually use), we are making:
Almond sugar cookies (my Aunt Lolly’s recipe), with crushed almonds and almond flavoring in place of vanilla. The scent was so heady, Chris wandered out of his room just to find out what was going on!
Next up, peanut butter cookies, using the “natural peanut butter” Craig asked for, then decided wasn’t crunchy enough. I added some crushed peanuts, just to be safe. Then roll ’em in more crushed peanuts and sugar. Because … well, you just can’t get enough peanuts in a peanut butter cookie!
Finally, my grandmother’s (Dixie’s) oatmeal chip cookies. I remember making these with her when I was a little girl, measuring out the oats and dumping them in the bowl. I figured we need at least one kind of cookie that will satisfy the sweet tooth of someone with a nut allergy, right?
Tomorrow is Sarah’s first guitar concert. She’s only been playing a couple of months, but the teacher already has her in a group of girls playing Taylor Swift’s “Last Christmas.” Looking forward to the fun!