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.

 

 

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Life Juggles: Multigenerational Family Edition

When you’re living in a multigenerational household, sometimes it helps to know where those teenage “aces” are kept … especially on business trips. (Please pray they’ll hold on till Wednesday!)

Extraordinary Moms Network

3gen.jpgWhat do you do when your husband calls in the middle of a work-related event, in Chicago, and says that your mother needs help getting on her jammies, in South Bend?

Why, you ask to speak to your daughter, of course. “But she’s already gone to bed,” he hedges nervously. I can’t see his face, but I can read the subtext clear as day: “PLEASE don’t make me go in there!” (*sigh*)

“Put her on the phone, honey.” Noises and loud protestations ensue in the background. True to form, said teenager comes to the phone snarling. “WHAT?!”

“Sweetie,” I say through clenched teeth. “Do you remember the talk we had before I left that you needed to help get Mammie ready for bed while I’m gone?”

“I’m sleeping.”

Time for the big guns. “So… You want DAD to go down there and help her get dressed? How do you think Mammie…

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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.

 

 

A Woman’s Life in Shoes

Scan_20180412 (4)You can tell a lot about a woman and her outlook by her shoes.

Today I took mom shopping for diabetic support shoes. At the Leather Banana (don’t ask me why they named it that), which was the only place in a ten mile radius that offered both shoes and insole supports. Apparently butt-ugly orthopedics is the tradeoff for good circulation. There was one pair of pink-and-fuzzy slippers on the shelf, which I tried to get as a consolation prize. “We don’t carry those anymore,” she told me. But of course.

So, we went with the beige Velcro slip-ons. She walks steadily in them, which is a good thing. But oh, you’ve come a long way, baby!

Look at this. It’s the photograph Mom selected for the “Guess the Geezer” contest this week at her adult daycare. This was a young girl who was going places – white cowboy boots and all. As I was cleaning out her stuff from my father’s house last year, I came across these high-heeled golden lame sandals that Sarah snatched up before I could get a close look. These were in a corner, next to the sensible church lady heels and the garden clompers and the fuzzy house slippers and the running-through-the-grocery store athletic shoes. Like the good Catholic girl I am, I saw these as tangible proof of the many sides of my mother.

Now that she is squarely in her declining years, it seems a shame that it all comes down to utilitarian concerns like balance and circulation. But maybe this, too, is something to consider, something to remember, something even to venerate. Because these are the shoes for the last mile, the hardest mile, before that little cowgirl goes home for good.

What do your shoes say about you? Put your favorite pair in the comments!

Alaska Dreaming

alaskaFor as long as I can recall, my mother has talked of wanting to go to Alaska. When she was younger she dreamed of wanting to go and work as a missionary among the Native Americans. As a wife and mother, she set this dream aside … but the longing has never gone away. Something about the place fires her imagination.

When I used to visit her at the memory care facility in Georgia, one of the hardest parts of walking away and leaving her behind was knowing that, although she was still living, her life was pretty much over. An occasional visitor was the only relief of monotony in days filled with the drone of the television set or staring at the four walls of her bedroom. This, for a woman who had filled her own days with quilt making, cookie baking, and volunteering at church every time the doors opened. (After tending to her own home and husband, of course.) She and Dad traveled all over the country those last years of their marriage, making a special trip on their fiftieth anniversary. But they never made it to Alaska.

Now that she’s with me, her life has gotten better. Her lift recliner is squarely in the middle of the family room, where she is in the middle of all our comings and goings. She goes to daycare four days a week, so she can interact with people her own age. I’ve made efforts to help her find a church home, but she seems content going with us. And when we go places, she hops in the car and rides along. This summer she’s going to go visit my sister Kathy … and if I can manage it, we’re going to go visit my other sister in Washington, too. I’ve never been to Seattle, so this is on my bucket list, too.

As I think about making the trip west, though … Alaska is just a little further, beckoning me. We could take a train to Vancouver (another place I’ve always wanted to see), and then … what would it take to make it to Alaska?

I don’t know if we can do it. But I’d sure like to try. What wouldn’t I give to be able to say that I was able to make my mother’s dreams come true?

 

 

It’s Dementia, Dammit.

IMG_2934Just when we had turned a corner,

Just when you were getting better,

There you go again.

How I wish that you were here.

 

Just when you were settling in,

Just when we began to win,

There it goes again,

That thief that robs you senseless.

 

Restless hands. Troubled mind.

Anger never far behind.

Close your eyes, wish for day,

Let the voices have their say.

 

Take my hand so you don’t fall.

Hear me whisper love so tall, that

All the shadows hug you tight.

Good night, dear Mother. Just good night.

 

 

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?