How a Caregiver Spells “R-E-S-P-E-C-T”

generationsThis 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?

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Are We F-I-N-I-S-H-E-D Yet?

3gen.jpg

Last night I found myself in the middle of a chaotic exchange between my teenage daughter, my elderly mother, and myself. My husband was gone, and both of them were unhappy with me for reasons that made no sense to me. (I chalked my daughter’s tantrum up to teenage hormones, my mother’s up to dementia. Mine, simply to the resentment of being squeezed into an impossible situation.) When will it end? I kept asking myself. When will the nonsense end?

It was tempting to hold a ginormous pity party for myself. Or simply to put my foot firmly down, and insist that it was “my way or the highway.” But what would that have done? It would have led to a stubborn standoff, each of us retreating to our separate spaces feeling resentful, bullied, and misunderstood. Instead I took a deep breath.

I think we need to lighten things up a bit — how about a game of Scrabble?” I pulled out the board I’d inherited from my maternal grandmother, a Scrabble shark if ever there was one. Mom’s eyes lit up … dementia or no, she can always give me a run for my money. And Sarah likes nothing more than to see her mother beaten, fair and square.

I drew my seven tiles, then made my play: d-a-r-n-e-d. Six letters, not bad. Double points.

I heard an intake of breath, then with slightly shaking hands my mom built on my final “d”: F-I-N-I-S-H-E-D. Using all her tiles, she put her score light-years ahead of mine. She caught my eye, the triumphant gleam unmistakable. “You’re FINISHED!” she crowed.

Not quite, Mom. But someday. Someday.

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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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 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!

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.