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.

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Help! Snail Crossing Ahead

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If you’ve ever been an adult caregiver, you know that finding and keeping reliable, personable at-home workers (especially CNAs) is one of the most challenging parts of coordinating care. While I know many caregivers go without home health care aides, I simply cannot manage the all the lifting and bending my mother needs, and even though I work from home I need to have someone keep an eye on her when I’m working in my office downstairs, to keep her alert and active as possible.

Care.com has been helpful — we found our best worker there. But the payroll service that is affiliated with them was tough for my elderly father to figure out, and so when our second home healthcare worker emailed me today to let me know that she was not going to be able to continue to work with us (she recently passed her boards and was making more money at the other job), I panicked. Mom’s Medicaid is supposed to go through in the next couple of weeks, and she’ll start a new program that handles morning routines and pick up/delivery. But how am I going to hire someone for just a couple of weeks?

The truth is, I can’t. We’re just going to have to hunker down and get through it. This will mean getting up earlier, starting the day sooner, and managing one more person’s daily routine at a snail’s pace. Then again, maybe it’s not such a bad thing.

Tonight’s reading, from Jesus Calling, seemed particularly apt. “Don’t rush about, or think too far ahead of what your next task will be,” I read. “Just focus on the task in front of you, and allow your will to conform with mine.”

Indeed. Isn’t that just the antidote to all worry and stress? To slow down, and stay in the present moment. Lord, thank you for the chance to practice this spiritual discipline again.

 

 

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….”

60 Minutes on Dementia: The Slow Goodbye

60 minutes dementia

Last night I watched the 60 Minutes special about Mike and Carol Daly and their twelve-year battle with Carol’s Alzheimer’s disease that has eaten up the last years of their 53 year marriage. Dr. Jon LaPook has been journeying with them for the past ten years of that journey, beginning to interview the couple in 2008. You can watch it here.

While the physical and mental toll of the disease on Carol is evident in each segment, her husband’s physical and emotional deterioration was equally heartbreaking. As Carol struggles to recall her age and recounts the loss of her ability to make even a simple meatloaf, Mike’s undiminished love for this woman shines in his eyes. This is the woman he married, who has cooked and cleaned and taken care of him for over half a century. He won’t give up on her after all she has done for him. It would be unthinkable. “When we took our oath, it was for better or for worse. This is what I signed up for in the beginning.”

Years later, he admits that when he said those words to the journalist, she had only recently been diagnosed. The woman he loved was still there; now, ten years later, that woman is gone. And yet he stays, supported by home health workers and watching their life’s savings dwindle away to nothing. “I’m dying,” he says. And so it seems.

Watching this couple face such devastation so bravely, it occurs to me that there are worse things than death. Surely watching the love of your life diminish, leaving you the caretaker of a lifetime of memories as you face years of tending to the shell of the person he or she once was, falls in that category. And when the person who has the disease is the one who, like Carol, did most of the caretaking up to that point, the future looks especially bleak. Mike was once a New York City police officer … but this, this is infinitely harder. Ten days after their 53rd anniversary, he puts Carol in a nursing home — for her own safety, and because after twelve years, he realizes he has reached the end of what he can do. No doubt if Carol were aware of what her beloved husband was facing, she would have tried to ease his burden. But now it is too late.

Watching the program, I am grateful that Mom and I can still have conversations about things that matter. Moving her here from Georgia meant that the social and spiritual ties she enjoyed have been greatly diminished — she stays in touch with family and friends through a private Facebook page, where I post pictures and stories and they share their comings and going. She and her friends regularly exchange cards and notes and the occasional phone call. I tried taking her to a Baptist church here in town, but she insists she likes going with us to our church. We are trying, as best we can, to care for each other.

But Carol Daly is a grim reminder of what is ahead. The day will likely arrive when Mom will not remember who I am, or who she is. Now she can still dress herself and shower herself with minimal assistance; that won’t always be true, either. And she and my father have already seen the worst of it: the implosion of a marriage that lasted half a century. All that remains is duty and deeply cutting shards of memory. In some ways, it will be a severe mercy when those are gone.

My mother watched her father decline in a veteran’s hospital from Alzheimer’s; he was murdered in his bed by a roommate who smothered him in an effort to stop the snoring. Now it’s Mom’s turn, though I am praying that she will die here, with us. And one day … I have already let Craig know that I don’t expect him to be a superhero. “If this happens to me…” I tell Craig. Find a safe place for me. Then get on with your life. I don’t know if he’ll listen — Craig reminds me a lot of Mike Daly, to be perfectly honest. But at least we’ve had the conversation. At least he knows.

Thanks, Mike and Carol, for sharing your story — and for giving other couples a chance to benefit from your story. And for showing what love looks like when in its hardest, purest form.

 

 

Tips for Caring for Parent with Dementia

womanIf 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.

What tips would you add to the list?