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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Traveling with Dementia

mom going to seattleThis week my mother and I flew to Seattle to visit my sister Chris. It was the first time in the Pacific Northwest for the both of us, and we both had bucket list items to check off: My mother wanted to see a whale, or the coast of Alaska; I dreamed of having tea at the Empress Hotel in Victoria.

Sunday Mom gets her wish. I got mine LAST Sunday, when I took the Clipper Ship Cruise to Victoria for the day. It was every bit as wonderful as I’d hoped it would be … and I hope Mom has a whale of a tale after our excursion, too.

The thing is, we almost didn’t make the trip. The day before we were to leave, Mom’s delicate internal workings kicked up a fuss, requiring several doses of Imodium to get it under control. I remember what her psychiatrist had said on the last visit. “Your mom may be getting to the stage where travel is too difficult for her. People may need to start coming to her, because travel can be disorienting for dementia patients.”

Mom insisted that she wanted to go see Chris. I think that, like many times in life, the prospect was infinitely more intriguing than the reality. However, we started early, left plenty of time for rests, and contacted the airport ahead of time so they would have a wheelchair and attendant ready for every leg of the trip. We got there safe and sound … and though she is sleeping more than usual, she seems to be having a good time. I know Chris and I are enjoying this quality time with her, too.

Here are some things we did that I think makes the difference between a “not bad” trip and a great trip.

  • Don’t over-plan the itinerary … and build in some down time for both of you. The first two days mom stayed with my sister in her apartment, while I took a trip to Victoria on my own. Bliss.
  • Don’t cheap out. Pay for convenience. We got super-cheap airfares on Delta (who is now my airline of choice for traveling with my mother). It cost extra to check bags, but I went ahead and ponied up so I didn’t have to drag everything we both needed through two airports. I also sent a package via Amazon with toiletry products directly to my sister about a week ahead of time. Worth every penny.
  • Keep routines as familiar as possible. Bring a favorite pillow, her favorite bedtime reader, her favorite tea. Let the host know what kinds of supports would be most helpful (commode, shower bench or handles, mattress pads, etc.). Remember to pack a “travel bag” similar to the one you keep in your own car with over the counter and everyday meds, extra pants and sweater, plastic bags, disinfecting wipes, a change of clothes, list of doctors and emergency contacts (including your own cell phone number), copies of medical card and ID, and snacks and water. Put it in the rental when you get to your destination.
  • As best you can, anticipate the unexpected. Tape a small card with your name, phone number, and medical condition information inside your loved one’s shoe, in case you are separated. When you arrange for the wheelchair, you should also alert the airline that you will be traveling with an adult with cognitive impairments, in case he or she has a breakdown at the airport.
  • Be prepared to pay a price for the adventure. Either during the trip or afterwards, you may experience some temporary setbacks (tears, blank-face, belligerence, or a flare up of other symptoms). Your loved one may be happy to see your host, but be uncooperative or demanding with you, her regular caregiver. I’ve learned not to take it personally, but to chalk it up to the loved one feeling tired or overwhelmed. Tomorrow is another day. Make the most of it.
  • Remember to have fun yourself. Have your favorite treat or drink on hand, and let (or even ask) the host family members or pay a sitter to take over some of the everyday chores or just sit with your loved one so you can take a break as well. Put Netflix on your cell phone to keep your loved one (and yourself) entertained during down times.
  • Slow down, breathe deep, and notice the little pleasures of life. It all passes so fast … and the best memories are often found in the things you didn’t plan.

 

Daycare Dilemma

woman  Sneaky Pete is on the warpath again. At least, I think that’s the source of my mother’s tears this afternoon when she came home from daycare.  “They took a vote,” she said plaintively. “They told me I drool too much to stay there, and they voted 100% that I had to go.”

Now, I suppose it’s possible that one of the other clients had said something nasty. Eldercare, I’ve found, can be a lot like going back to middle school: there are rich kids and drones, physically fit and couch potatoes. Above all, there are mean girls whose sense of social propriety has gone the way of nighttime continence.

“Who was it that said these things to you?” her afternoon aide inquired gently. “If we know who it is, we can do something about it.” Mom shook her head stubbornly. She did not want us to fight her battles. She just wanted a safe place to cry.

After a hearty dinner and a soothing bath, it was time for our nightly tuck in. Tonight’s psalm in Jesus Calling was especially sweet: “In peace will I lie down and fall asleep. For you, O Lord, make me secure” (Psalm 4:8).

Growing old is not for the faint of heart. It must be tough, losing control of functions that you once took for granted … even the ability to eat a bit of food or sing without drooling. Or have a clear sense of self, without being tormented by the never-ending accusations of Sneaky Pete. Lord, help me to remember this when I am tempted to lose patience. Help me to show love, to give her reassurance, so that she might find the strength to endure.

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.

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.

 

 

Are We F-I-N-I-S-H-E-D Yet?

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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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