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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Like Deckchairs on the Titanic … a Time for Comfort

stepping-stonesI’ve never visited anyone in a place like this before, let alone a loved one. It wasn’t until dad grabbed my hand that I realized my fists were clenched. His touch also prompted me to take a deep breath — turns out I wasn’t breathing, either. Odd.

Inside, a small scattering of residents were camped out in the common room, some sleeping, some watching T.V. Mom was sleeping on a sofa, and when I touched her shoulder, she opened her eyes, focused … and smiled. Quickly she sat up and hugged me, and I waited for her to say something.

For two hours, I waited. We communicated with an improvised game of charades. I stink at charades. It was painful, seeing her life reduced to a single room with a colorless bedcovering and bare walls. And in that moment, I knew what my task this week was going to be: a bit of beauty.

Now, I don’t kid myself that this is going to materially change the outcome of her situation. My other sisters have labored tirelessly to support my parents, helping them to make the medical and other decisions necessary to keep them afloat. This is the first time this year I’ve been able to make it down, for a variety of reasons. And though I’ll admit it may be a bit like rearranging deckchairs on the Titanic, at least it’s in my power to make sure those chairs go down spit-shined.

Her mother’s quilt. A lunch of homemade soup and bread. A good book (I chose one of mine, and another favorite, A Walk in the Woods by Bill Bryson.) And after lunch, we go back to the common room and sit at the piano, and she turns the pages in the old hymnal while I play song after song.

“She’s having a good day,” Dad said. “That’s two in a row.”

Please, God. Make it a week.

This is not your typical “Fun Friday” post, but somehow it seems appropriate to be publishing this in the typical timeslot. Because when it comes to family, “fun” isn’t always measured in roller coaster rides … and when it is, those coasters aren’t always the kind you find at Hershey Park.