Watch Your “Persona”

marymarthaDo you ever look around and wonder who your friends are? I sometimes do. I’m naturally introverted, and yet the combined effects of several relocations, caring for two special-needs kids (and now my mother), and endless work-related social media interactions (I’m an editor) have depleted my little black book on those rare occasions when I’m craving a girls’ night out.

Yesterday I was discussing this with an author friend who happens to fall in the category of both professional and personal connection. She has met my extended family, and made rosaries for my kids. I’ve slept at her house, and call her whenever I’m in her area to get together.

Apparently this sense of rootlessness is something that many women experience. She also made me sit up and take notice when she identified what is often the source of the problem. “There are persons, and there are personas,” she reminded me. “When you are a writer, you cultivate a persona that you let out into the world … but it’s not the same as the real you, known to your real friends.”

The moment she said this, a light bulb went on. Do editors have personas, too? Of course! So … how do I set aside the persona and let the “real me” out to play, to establish real friendships?

Interestingly, my friend’s first suggestion was … silence. Spending time together in silence, “until the uncomfortable silences become comfortable.” Of course, this isn’t something that can happen on Facebook, or in any other social media venue. It takes physical presence. It means stepping away from the computer and inviting others into the messiness of ordinary life.

This is risky, of course. I’ve had women — from church, for example — who have reached out and made an effort to connect with my daughter and me. It always surprises me a bit, to experience such kindness, knowing that I’m not really in a position to reciprocate meaningfully. What is more, the way my life is set up right now, it seems almost impossible to set up regular get-togethers. And yet, this is exactly the kind of effort true intimacy in friendship requires.

The topic of friendship is very much on trend these days. Emily Jaminet and Michele Fahnle’s The Friendship Project is being discussed in book clubs and parish women’s groups across the country. Elizabeth Foss published True Friend, a four-week devotional to help kick-start friendship in your own life.

And yet all these wonderful books won’t do a bit of good unless I’m willing to venture into that scary territory of vulnerability and initiate contact. Invite someone over (or invite myself over) for a cup of tea. Strike up a conversation with someone at a bookstore who is carrying a book I’ve recently read. Even (*gasp*) take that water aerobics class for us grannies-in-training and chat up the friendly looking lady on the kickboard next to me.

Because every decades-old friendship begins with the touch of a real, live person.

 

Caregiver “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?

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.

 

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.

A Caregiver’s Psalm 23: Through the Valley of the Shadow of Dementia

sheep1The Lord is our shepherd, what more could we want?

He guides us to rest in electric recliners, to sip cool water.
When confusion invades, he bids me peace.
He diverts and reassures me as is needed,
And stays very close at the whisper of his name.

Though we traverse in the shadowy places,
where memories threaten to overwhelm and bring pain.
I will not fear tomorrow, for you give me strength.
You lift me high up above the turmoil, and help me
to see that one day we shall laugh together again.

We set the table together at suppertime,
and I pray that the pills do their job.
And that the Spirit will breathe peace
to fill in those rough places.

You fill up my head with love
and reassurance, and I smile
As once again we celebrate
being together as a family.

You are goodness and mercy,
and will never leave us, even at the hour of death,
When at last we will dwell in your house,
and all pain and suffering will be gone forever.

amen

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?

 

“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.

The Long-Distance Daughter

OLYMPUS DIGITAL CAMERALosing a parent is never easy. All the steps leading up to that moment, whether sudden onset or gradual decline, and whether physical or mental or both, bring their own set of challenges for those who are close enough to assist. But these past few weeks I’ve discovered that being the “long-distance daughter” is its own kind of hell.

Often there aren’t any good options. Drop everything and go? Maybe — of course, it may be only a temporary (and costly) solution to what is likely to be a long-term need. Meanwhile, jobs and kids and responsibilities pile up relentlessly. Airplane tickets cost money, and driving may not be practical.

Stay in touch by phone, praying, and wait for a call to come? Sometimes that is the only thing to do … still (and this may be the “oldest child” in me talking) it’s hard not to feel guilty about leaving the heavy lifting to siblings who have equally busy lives and equally limited resources.

Years ago, I remember my mother commenting how hard it was for her, as the oldest daughter, when her mother chose to move in with her granddaughter, my cousin. Mom felt that she should be the one to tend to her mother’s needs, and make her mother’s last days as comfortable as possible. Yet in the end, Mom’s role was one of welcome visitor, rather than care-taker. It was a painful, but unavoidable, reality: She was the firstborn, but not the one to whom her mother reached out for help.

Rationally, she may have understood why things turned out the way they did, just as I see the logic of my own parents’ choices: It makes sense to have the daughter with a financial background manage the finances, the daughter in closest proximity to handle the medical decisions, and the daughter who is an advocate in her professional life to advocate for my mother’s needs where she is. It is also true that, even if I were the best person for the job, I have real limitations due to the needs of my own family, not to mention the eight hundred miles between us.

Even so, I have to say, it stinks to be the long-distance daughter. With all the engrained sense of responsibility of being the oldest, it’s hard not to be self-incriminating and reproachful. And yet, having watched my own mother walk this particular path, I have witnessed some of the landmines. Resentment. Anger. Helplessness. Pettiness. Fear. Did I mention resentment?

And then, the greatest bugaboo of all: plain, interminable grief. She has not died, though she is no longer herself. A dying of a different kind.

Have you ever been a long-distance daughter? How did you get through it? What did you find helpful?