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).

 

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.

If You Give a Mom a Cookie …

amazon-if-you-give-a-mouse-a-cookie(With a thankful nod to Laura Numeroff.)

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.”

Thankfully, he did not get the Baileys.

Making Time for What Matters

night driveMom has been visiting with my sister in New Hampshire for the past two weeks, and yesterday was the day Sarah and I drove to Toledo (which Kathy insisted was the most convenient meeting place … it involved twelve hours of driving for her, two and a half for me, but … well, okay.)

While we waited for my sister to arrive, Sarah and I hit the movies and took in Mama Mia 2: Here We Go Again. In this movie, the mother (played by Meryl Streep) has died and the daughter (Amanda Seyfried) is about to have a grand re-opening party for the hotel that she has remodeled as a memorial. The movie itself is a series of flashbacks and forwards, showing how the daughter is following in her mother’s footsteps all along the way (except for the crazy gal pals, I guess). Each generation in turn sets a goal, makes a plan, and rallies those near and dear to help pull it off with single-minded ferocity.

And everything is beautifully color coordinated in Elysian Blue.

Late last night, my sister and I talked for a long time about our respective lives, how things have changed since mom has joined us (and they have). Their two weeks were replete with quilt shops, swimming holes, and homemade sweet potato pie. By contrast, mine is full of laundry, getting kids to do their chores, and pill counting. At the end of the day I collapse and either heat or ice my shoulder in an effort to get the ache to go away long enough for the Tylenol PM to kick in so I can sleep.

No twinkly lights. No spontaneous bursts of song. Unless you count the fifteen minutes I spent forcing my daughter to go over her choir music. Although she has an amazing voice, she doesn’t like people to look at her, and so getting her to sing in the new youth choir required a minor miracle. I told her I didn’t want a birthday present if she would just sing for one performance. Mama Mia, here we go again…

Then, unexpectedly, my mom wandered into the room and sat in her recliner, fixed her gaze on Sarah, and smiled. And if by magic, Sarah started to sing Panis Angelicus. A little breathy at first, then with greater confidence. I tried to reinforce the Latin pronunciations and got the stink eye … but as long as Mammy was watching, all was well.

So glad you made it home, Mama Mia.

When Mom Prays…

prayerTonight, I’ll be honest, felt like a big, fat fail in the parenting department. I’ll spare you the details (or perhaps it’s me I’m sparing), but at one point I looked into the snarky face of one of my children (ha) and thought (very loudly): “I don’t know if I can hold on another day.” Then I made the horrific mistake of opening my mouth and telling her exactly what I thought of her and her behavior. (Woops. Kind of gave it away there.)

My mother was sitting in the next room, and there is no way she couldn’t have heard what was going on. But she didn’t say a word. All through dinner she was quiet. Then I took the kids to youth group (“Yes, you DO still have to go even though you are 18, young man”) and came back just in time to hear of another complication that will be re-entering my life in two more weeks. *sigh*

Even after icing and heating it, my arm was throbbing like someone had set it on fire. But I made my way downstairs to put mom to bed and read to her. When we finished our devotional read, I asked her if there was anything she wanted to pray for. Her reply was immediate and simple: “I’d like to pray for you.”

My eyes were full of tears before she said the first word. I was a little afraid, truth be told, because there was no hiding the fact that I had been short, and mean, and cranky all day. Apart from the hour or so we spent in the Japanese garden in Mishawaka, and the hour I spent unconscious in my room afterwards. But you’d never know it as I heard the words fall from her lips, kind and gentle like rainfall.

“Lord, thank you for my daughter. Thank her for everything she has done for me, and how hard she works every day. Help her to listen to her body, and to be gentle with herself. Help her to know how much she is loved. Help us both to know which way to go in the days ahead, so we will be doing just what you want us to do.”

It’s been a long time since someone prayed for me like that. It kind of took my breath away. And suddenly I saw myself as my mother sees me — someone who is just doing her best with the hand she has. And someone who wants to do the right thing.

Later, as I sat there thinking about her prayer, I realized that this is probably what my daughter needs from me, too. Someone who will be gentle and kind. Someone who knows she is just doing her best.

“Lord Jesus, thank you for my daughter….”

A Caregiver’s Psalm 23: Through the Valley of the Shadow of Dementia

sheep1The Lord is our shepherd, what more could we want?

He guides us to rest in electric recliners, to sip cool water.
When confusion invades, he bids me peace.
He diverts and reassures me as is needed,
And stays very close at the whisper of his name.

Though we traverse in the shadowy places,
where memories threaten to overwhelm and bring pain.
I will not fear tomorrow, for you give me strength.
You lift me high up above the turmoil, and help me
to see that one day we shall laugh together again.

We set the table together at suppertime,
and I pray that the pills do their job.
And that the Spirit will breathe peace
to fill in those rough places.

You fill up my head with love
and reassurance, and I smile
As once again we celebrate
being together as a family.

You are goodness and mercy,
and will never leave us, even at the hour of death,
When at last we will dwell in your house,
and all pain and suffering will be gone forever.

amen

Night Driving

When the kids were younger, we’d sometimes load them into the car right after supper and start  driving, gradually lulling them to sleep by sheer tedium and the gentle lullaby of the wheels on pavement as it lub-dubbed down the highway. If all went according to plan, we would pull into their grandparent’s drive in time for breakfast.

Craig always took the first shift, while I held out for the “night drive,” when his eyelids would start to get heavy despite his best efforts to stay awake to “keep me company.” Within minutes of my taking the driver’s seat, the familiar rumble of sweet sleep began to emanate from the passenger’s seat. And I’d smile.

Not all of it was so idyllic, of course. Pounding all that Diet Coke can give a girl a headache. And yet, for me night driving is the perfect metaphor for parenthood. Most of the time, I drift along in this fuzzy yet pleasant haze. Other times the senses are hyper-alert, painfully aware that any moment something big and dangerous can leap in front of you and endanger all you hold dear while everyone else is blissfully oblivious to your discomfiture, napping or reading or otherwise occupied. Your only real company, it seems, the dog, who creeps up and lays his head on your knee, sensing a need to be vigilant …

It’s not always a bad thing, this conditional solitude. The mind wanders, pondering (and even solving) problems, making lists, ruminating about all the possibilities of life. A welcome respite from a world of unmitigated noise and distraction. You know it can all change in the flick of a radio switch, which makes it that much more precious. And so, you drive.

How is parenting like night driving for you?

Photo credit: Drunken Pineapple

“Room for One More”: Tale of an Unlikely Thanksgiving

This year I was determined to have a table full for Thanksgiving. With Christopher away, the prospect of cooking a turkey dinner for three was . . . unthinkable.

Long story short, we had two special families join us, families that have extended themselves to us in friendship in a special way this year, journeying beside us for what has been the bumpiest mile of the journey of our lives. Thank God we are getting through it . . . together. Not just us, of course. In reality, we have been constantly surrounded by “family of our own choosing.”  Katy and Todd, Christopher’s godparents; Laura Sanders and Helen Ercolino, who provided therapeutic services; and dozens of others who let us know over and over that they were praying for us. So much to be thankful for.

There have been unpleasant surprises, too. Strained and broken relationships. Injustices inflicted, seemingly without recourse. While many prayers have been answered with small miracles . . . others received nothing more than a simple, “My grace is sufficient for thee…” And with each step, in each moment, we’ve discovered the truth of Teresa of Avila’s classic prayer: “Let nothing trouble thee . . . God alone suffices.”

Tonight Craig and I were watching a little-known (at least to us) movie starring Cary Grant, “Room for One More,” a true story circa 1952 about George and Anna Rose. This Lynnwood NJ couple with three children began taking foster children, including several with emotional special needs. Like many adoption or foster care movies (Martian Child, The Blind Side, Matilda) the conclusion is a bit idealized. On the other hand, the experiences of the past year allows me to see these movies with a new perspective: sometimes, when you’re mid-struggle, it helps to be reminded that the struggle can be worth it in the end. The pain is real . . . but then, so can be the joy.

Happy Thanksgiving!

Healing Childhood Trauma

This week on CatholicMom.com, my column deals with the signs parents should watch for in their children that may indicate they are experiencing trauma and need professional help. The source of the trauma varies from child to child and from family to family: divorce, death, separation, neglect, abuse, financial stress, the list goes on. For children touched by adoption or foster care, unresolved trauma from the circumstances that caused them to be separated from their birth families can affect them into adulthood, even if they are loved and supported by their new families. Love, in and of itself, does not always “conquer all.”

What I wish someone had thought to mention to us when we first got our children, is that unresolved trauma can lie dormant for a time — only to bite you in the glutes as the child approaches adolescence. So parents need to keep a watchful eye, especially in children who have been diagnosed with “invisible disabilities” such as autistic spectrum disorders, ADHD, ODD, attachment issues, and so on. And parents of children with a history of abuse and neglect must never let their guard down entirely. Sneakiness and deceit — even with children who are otherwise good and truthful — is part of the disorder.

Another thing I wish had been pointed out to me is that trauma affects parents, too. After years of dealing with acting-out behaviors, your parent brain may not catch the more subtle signs of “something is not right here.” Not only do your kids need help in healing . . . You may also need help in dealing with the stress.

This week’s Gospel, in which Jesus gives dire warnings to those who cause one of his “little ones” to stumble, predicting millstones and a watery destruction, also provide a faint hint of hope to those who hear with the ears of faith. For the Christian, “death by water” has an entirely different connotation than it does for those who have not experienced the “dying with Christ” and “rising to new life” that baptism represents. Through our baptism, we do have all the graces we need to complete the journey. The path is not without suffering, for we follow in the steps of the Savior who suffered and died for us. But as we travel the road together with our children, we can persevere in faith, trusting in the perfect healing that is to come.

Kudos to “Dear Carolyn” — Advice for Caregivers of Disabled Adults

While I don’t always agree with the advice columnists dish out, I was touched by this letter in the “Dear Carolyn” column in AnnArbor.com.  For those who care for developmentally disabled adults, having a support structure in place that is not dependent on the exclusive efforts of one person is truly a prudent choice.  Here’s the letter….

Dear Carolyn:My wife has five siblings, one of whom has developmental delays. We are in our 50s and 60s. In June 2008, I was asked to assist in obtaining benefits for one of the siblings (paperwork isn’t this family’s forte). In the process, I became friends with my brother-in-law.

We are in contact often regarding his progress, and I have come to realize he has had to traverse too many complicated and confusing things alone. I think the family may have assumed he understood much more than he actually did. My brother-in-law may not have expressed his confusion, wanting to appear “like everyone else.”

After 18 months, I have not had one request from any of the siblings for an update. If I dropped dead tomorrow, not one of them, including my wife, would have a clue where to pick up the fight for multiple benefits. Does this sound odd, rude or ungrateful to you?

— Nebraska

It’s unfortunate, I’ll grant you that. Without knowing anything about the road this family has traveled, though, I’m not going to judge the condition in which they’ve arrived.

Instead, please consider achieving your moral ends through relentlessly practical (if burdensome) means. Document everything you do for their brother, and draw up clear instructions — updated regularly — for someone to pick up wherever you leave off, should you … “leave off” tomorrow. Invite your wife and/or any remotely cooperative siblings to look over your shoulder, too, so you can teach them what you’re doing. Don’t wait for them to show interest; they may never. Just encourage and equip them to care.

What I appreciate most about this response is her intuitive understanding about this DD man’s family, who have doubtless been coping with his disability all his life. And doubtlessly are relieved to have someone who is willing and capable (the combination is a goldmine!) of handling the minutiae. It’s not that they don’t care. It’s very likely that they’re simply worn out.

It’s a thankless job at times … and one that perhaps this brother-in-law might wish he were getting more appreciation for doing. He’d be in good company — much of the work involved in tending to those with special needs is thankless, hidden, unrelenting effort.

It isn’t easy. But it is important.

If you are feeling overwhelmed and unappreciated today, know that you, too, are doing important work! It might not feel like it at times. And there will be times when you wish you could be doing ANYTHING other than what your hands are doing right at that moment.

It is your task to find the gift in all the unpleasant wrapping. Yours to find the cause of your joy, just for today. Just in this moment.

What is God asking of you right now, at this point in your Lenten journey?