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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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?

 

 

“Am I not your mother?” The pressing question of Our Lady of Guadalupe


This photo of Basilica de Santa Maria de Guadalupe is courtesy of TripAdvisor.

Today Catholics all over the world celebrate the feast day of Our Lady of Guadalupe, the appearances of the Blessed Mother to a poor Indian named Juan Diego shortly after the fall of the Aztec capitol city of Tenochtitlan to Cortez in 1521. Four times she appeared to him, dressed as a pregnant Aztec maiden, calling him her “son” and sending him to the bishop in Mexico City, where she wanted a shrine built.

“My dear little son, I love you. I desire you to know who I am. I am the Ever-Virgin Mary, Mother of the true God who gives life and maintains its existence. He created all things. He is in all places. He is Lord of Heaven and Earth. I desire a church in this place where your people may experience my compassion…”

Reluctantly, he eventually went — but the bishop did not immediately believe him. Returning to the hill where he first met the Lady, he found her waiting for him. Her first words ring down to us through the ages …

“My little son, am I not your Mother? Do not fear.”

Instructing him to gather the roses that had suddenly sprung up on the hillside (out of season), she sent him back to the vision. And when the poor man opened his mantle, the roses had imprinted a miraculous image — and the original tilma with the image has survived centuries of devotion, still on display behind the altar, perfectly preserved, at the basilica.

“Am I not your mother?” This question has new meaning for me right now. I recently started caring for my elderly mother, whose mind is burdened with dementia. There are some times when we don’t know how to reach each other, even while looking right into each other’s eyes. It’s a question I find myself repeating, over and over: “Is this not my mother?”

She is. And yet, not the mother I’ve always known. In fact, some days I think that the mantle has passed from her shoulders to mine.

I wonder, Juan Diego, if you ever looked into the eyes of that Lady and wondered yourself. “Who is this person? And what does she want from me that I haven’t already done? When will she be satisfied?” I understand, more than ever, the desire to escape, to go around the other way. Then, in a flash, I see her again, and I feel a little ashamed of myself. How could I NOT see that she is, indeed, my own?

I will not fear. For she is with me. And so, my Lord, are you.

Cookie Chronicles

blueberry zucchiniThis year, with Mom helping with the baking, I decided to dig out the old family receipe files and mix things up a bit from the tried-and-true gingerbread and candy cane routine.

In addition to the traditional banana bread (to use up the sour cream from the sugar cookie recipe I usually use), we are making:

Almond sugar cookies (my Aunt Lolly’s recipe), with crushed almonds and almond flavoring in place of vanilla. The scent was so heady, Chris wandered out of his room just to find out what was going on!

Next up, peanut butter cookies, using the “natural peanut butter” Craig asked for, then decided wasn’t crunchy enough. I added some crushed peanuts, just to be safe. Then roll ’em in more crushed peanuts and sugar. Because … well, you just can’t get enough peanuts in a peanut butter cookie!

Finally, my grandmother’s (Dixie’s) oatmeal chip cookies. I remember making these with her when I was a little girl, measuring out the oats and dumping them in the bowl. I figured we need at least one kind of cookie that will satisfy the sweet tooth of someone with a nut allergy, right?

Tomorrow is Sarah’s first guitar concert. She’s only been playing a couple of months, but the teacher already has her in a group of girls playing Taylor Swift’s “Last Christmas.” Looking forward to the fun!

Lessons in Poverty

IMatterA red-haired girl, about 7, energetically dragged her prize — a rolling Disney princess bag — toward my table as her beleaguered grandparents followed, their arms laden with treasures of their own. Six panels of curtains, a leather jacket, an assortment of glasses. On top of this, a dizzying assortment of tiny, sparkly skirts and tees that were clearly intended for the little fashionista who stood in front of me, ready to check out. Her dirty face shone as she squealed again over each bit of clothing as my daughter loaded it in to shopping bags with a smile. I was so glad she’d decided to come; it had been a good day.

At 2:00 I dropped off Sarah (who promptly went upstairs for a nap) and picked up Christopher, and headed to meet the others at the Center for the Homeless, to unpack the trucks full of donations for the food pantry. I have never seen more boxed mac and cheese in my entire life, and made a mental note to start donating more toiletries — toothpaste, laundry soap, and aspirin had been much asked-for items at the Cove. I made a mental note to collect soda bottles and fill them with detergent for next time.

After spending a full day rubbing elbows with the neediest members of our community, first at the Shepherd’s Cove Clothing Pantry (Elkhart), and then at the
Center for the Homeless
(South Bend), I dragged my body home and collapsed on the couch. I was tired and sore all over from the lifting, bending, and stretching. But I had learned a few things as well.

Don’t forget to pray. I saw an elderly woman’s eyes tear up in front of me when I asked if I could pray with her. Her granddaughter was moving in with her, and she had just found out her kidney cancer was back. She grabbed both my hands as I asked God to heal her, and to keep her granddaughter safe.

Little things mean a lot. A little kid tripped and fell, and his mother and grandmother both had their hands full. So I went over and picked him up … and saw that this was precisely the wrong thing to do. So I set him down and did a little song and dance, and got a laugh, the boo-boo forgotten. At the end of the tally, little Richard waved at me. “See you next time!”

Fear can make you greedy. I’d often heard this in foster training, in relation to food hoarding, but it came back to me as I watched people bring 30 shirts and 20 pairs of pants to clothe a single child. I wondered why they needed so much … but quickly dismissed the idea. I had seen the mountains of unopened donation bags. There would always be more. If this is what they believed they needed to get by, who was I to say no?

It really does take a village. I was surprised to see how much “stuff” was available for the people who needed it. The problem was that there were so few volunteers to sort, organize, and help the clients that much of the stuff sat there for weeks, unopened and unused. Donating just five hours a month — a single Friday or Saturday — could make a real difference.

If you live in St. Joseph County (IN) and would like to volunteer your time, or if you live outside the area and want to make a donation to keep the lights and heat going, contact Sharlee Morain at shepherdscove@hotmail.com