Emotional Journey

I have a new project for the blog, and I’m putting it out here for your consideration. I don’t usually like to promise I’ll write on any particular topic; the one time I tried that, the topic petered off after a few posts, and I went back to writing whatever was on my mind at the time. This is the same experiment, version 2.0, so it may or may not work out, but I’m going to give it a try.

For the past two Septembers I have been invited to speak at the Due West United Methodist Church Caregivers Conference in Marietta, Georgia, an event organized by the extraordinary Sheila Welch. Sheila runs the church’s Caregivers’ Ministry and puts together a free, one-day conference every fall for church members and anyone from the community who’d like to attend. It’s a remarkable event, with speakers from the local and national dementia community, and I’m honored to be part of it.

The first year, I gave a talk on how my work in the theatre prepared me for caregiving. Year two, I did a rather hastily prepared talk called Playful Caregiving, about the value of games and play in a dementia relationship; that’s one I’d love to develop further at some point. This year, I’m planning to talk about the emotional side of caregiving – the roller coaster of feelings, positive and negative, that come up as we travel this path with our loved ones.

I think about this a lot and plan bits and pieces of the speech while I’m driving or working in the yard, but it’s hard to make myself sit down and write about it. I thought maybe if I committed to writing blog posts about each emotion, I could get feedback from readers and keep myself on task.

So that’s the plan. I’d like to toss down some first (okay, maybe second or third) drafts of ideas for the conference here in the blog. (I can never publish a first draft of anything; my internal editor always wants to go over the copy.) If something I write speaks to you, or if you have an idea you think I should address, please let me know in the comments.

Meanwhile, here’s a picture of Mom entertaining a visitor at her assisted living.

Emotion: Joy. Question: Who’s having more fun?

Not So Happy Holidays

It’s the Most Wonderful Time of the Year!

Unless someone in your family is living with dementia, in which case, can I pour you a drink?

Or perhaps chocolate is your drug of choice. Then let’s belly up to the chocolate bar and drown our sorrows in cocoa and whipped cream. Either way, we need to admit that this is hard.

I’ve been absent from this blog for a while, partly from an abundance of wonderful creative work, and partly from uncertainty about what to share. Mom’s dementia is advancing, and I don’t know which stories to tell, especially at Christmas.

I can write about the things that are working, which is basically a form of cheerleading combined with self-congratulation: “Look! There are things you can do with your loved ones to keep them happy! It’s not so bad after all! You don’t have to despair! See, I’m not despairing!! Aren’t I wonderful?!”

Or I can acknowledge the grief, the dull persistent ache, of realizing that she’s getting more confused, that the disease is gradually taking her in the same direction it took my grandmother — to a place of paranoia and isolation. That route saddens me so much that I quietly avoid it. I work around it. I find ways to redirect her attention to things that make us both happy: songs, games, friends, church, simple sewing projects, nature. And I ask myself, am I really handling her dementia well, or just pretending it isn’t there?

As always, I suppose the truth is somewhere in the middle. It’s true that this is the hardest time of year for her, and by extension, for me. She genuinely believes that her gifts have been stolen. She needs to be reassured, over and over, that they’re all at my house, safely wrapped and ready for Christmas day. (Leaving them at her place just confuses her.) Next week she’ll say that all the gifts she received have been stolen, and take bitter, self-righteous comfort in the belief that at least, like a good little girl, she wrote her thank-you notes.

That’s how it goes, every year now. I hate it.

Yet somehow this year, I’m doing okay. I’ve learned not to draw too much attention to Christmas. We don’t decorate her apartment anymore, because the ornaments trigger her paranoia. We do a little shopping with her and take care of the rest on our own. We visit thrift stores all year round; her favorite thing to do is to buy me “something pretty,” and she never remembers what we’ve bought. This means I can pull out a sweater she bought me weeks ago, and put it under the tree as her gift to me. She won’t know the difference. That’s sad, but somehow freeing. One more step on the path to letting go.

And it’s true that, in this season of high expectations, this season of “Joy to the World,” I sometimes lose sight of the beauty in my little corner. But it’s there.

Last Sunday we took Mom out to lunch after church. She tasted her vegetables and immediately reached for the salt shaker. She took a few bites, reached for the shaker, and salted again. And again. And again. It’s a dementia thing; her sense of taste is changing. The fourth or fifth time, I gently but firmly urged Mom not to salt her food. I told her I was sorry to be bossy, but she’d already done it twice (no need to mention the other three times), and we needed to watch her sodium.

I noticed a woman at the next table looking at me with a concerned expression. I wondered if she thought I was being cruel; why shouldn’t my mother salt her food as much as she wanted? I wondered if I was being judged.

As we were leaving the restaurant, the woman caught my eye and whispered, “Bless you.” I stopped to make sure I’d heard her right.

“Excuse me?”

“Bless you,” she said. “I’ve been there.”

And there it was. The beauty. The sense of connection. The surprising knowledge that even when I feel most alone, a stranger understands.

I’d like to wish you a Merry Christmas or a Happy Holiday, a joyous celebration of whatever brings your family around the table this time of year. But I am letting go of the need, and the obligation, to be merry and happy all the time. Instead, I’ll just offer the secular salutation of my 1960’s childhood:

Greetings of the Season. Season’s Greetings.

In this season of beauty and loss, joy and heartache, I greet you, as the woman in the restaurant greeted me. “Bless you. I’ve been there.”

You are not alone.



I have such a good relationship with Mom right now, I have to remind myself that as close as we’ve always been, we have had our share of issues.

A good relationship?  In the midst of dementia?  Well, in an odd way, yes.

Dealing with her dementia isn’t always easy or pleasant, but it has forced me to let go of a lot of baggage, and that’s good for both of us.

I’m talking about emotional baggage — the issues that inevitably crop up between parents and children, married couples, siblings. Issues like unrealistic expectations, or personality conflicts, or bad parenting, or (in my case) an almost too-perfect parent who never intended to make me feel inadequate, but who was, by her very nature, so good at everything that I sometimes felt I’d never measure up.  Poor Mom couldn’t say anything about my housekeeping or my parenting without pushing my buttons:  What did she mean by that?  Was it a veiled criticism?  Why do I care??

Very few of us get through mid-life without some baggage, so if you’re like me, when a family member shows signs of dementia you are already carrying some weight. You get on the dementia train hauling trunks and suitcases of tired old resentments, fully expecting to use them all.  Who knows when you might need to reach in and pull out a pet argument or a sensitive point?

But eventually, dementia renders all of that baggage useless.  Sure, the person with dementia may argue, but she can’t engage in the subtle tug-of-war you packed in your train case. She can’t play your little power games, at least not verbally. She can’t remember what you said five minutes ago.  She can’t even remember what she said five minutes ago.

Cognitively, she is traveling light.

At first this is infuriating.  Just when you’re old and wise enough to prove to your parents that you know exactly what you’re doing, they can’t hold onto a thought.  I remember realizing that I finally had my house the way I wanted it, the way I knew my mother would love to see it, and she had stopped caring.  Her need to feel that she had succeeded in teaching me the domestic arts was completely overrun by her need to feel safe and loved.

This is when, paradoxically, dementia becomes a gift.  After a struggle — I won’t lie, this takes time — you begin to see that all the baggage you’ve been lugging around at great expense has stopped serving you.  It’s just a burden now:  your pride, your need for approval, your righteous indignation; all are worthless in the face of pure, vulnerable human need.  You begin to unpack, to shed, to leave things behind in baggage claim. You settle in with your traveling companion. For the first time on your dementia journey, you notice the scenery, and to your surprise, some of it is lovely.

I was visiting a friend in the mountains last summer, and she told me about her father’s last years.  “I was not close to my dad,” she said, “and I had a lot of anger.  It was hard to be around him sometimes.  But once he was really deep in the dementia, I let go of all that.  He was so obviously in a different place, and there was no point in digging up the old arguments.  I just let him be who he was.”

She just let him be who he was.

Wouldn’t it be amazing if we could do that for everyone with dementia?  For everyone, period?

Sometimes I think Mom’s dementia is my teacher, helping me learn to be present, to let go of expectations, to release.  By practicing with her, maybe I can learn to travel more lightly with all my fellow humans.

I hope so.  Baggage is heavy.



Crime Scene

I lost my temper with Mom today, but she doesn’t know it, because I’ve learned to keep these things to myself. So it can be our little secret. Okay?

Here’s how it happened.

Mom believes, every single day, that things have been stolen from her. This is a fairly typical symptom of dementia, and it long ago stopped surprising me. The good news is that most days, nothing is actually missing. She believes a basket of clean laundry has been stolen – she’s absolutely sure of this – but the basket is there in her closet, and the clothes are either in her drawers or in my dryer.

My sister and I don’t point out anymore that she’s wrong. That would be cruel. We validate her feelings: Oh, Mom, that’s awful. You must be so upset. This approach allows her to save face, and us to save our breath. Her reality is reality; there’s no point in arguing.

And when you think about it, people with dementia are experiencing loss. My insightful sister pointed out years ago that the missing laundry is a metaphor. Mom is missing something: not clothing, but something equally personal. She’s missing her sense of control, her belief that everything is in place. Parts of her brain have actually been stolen, embezzled by the firm of Plaque and Tangle, LLC.

There are days, however, when actual physical items disappear: usually her hearing aid, glasses, or room key. I keep spares of all three, because these are not things she can easily do without. After angrily denouncing the staff of her assisted living for stealing her belongings, she agrees to use the spare. And here’s the kicker: within a few days, the missing item turns up. I go to visit and see that the original hearing aid is in her ear, she’s wearing her regular glasses, or the key is in its accustomed basket on the bookcase. I do a little sleuthing to recover the back-up item, and whisk it away to my house. Mom never once says – or even realizes – that everything’s back to normal.

You see what’s happening, right? She’s hiding things. This, too, is typical of dementia. She probably puts these crucial items someplace safe, someplace where a thief won’t find them, and then loses track of them herself. Or, more infuriating, she may actually hide them in order to test us. Will we believe her when she says they’ve been stolen? Will we take her seriously? Or will we dismiss her as a crazy old woman?

I don’t believe for a minute that Mom is doing this consciously, but I think she might be doing it. As surely as a three-year-old with icing on her chin will deny eating the last cupcake, an 89-year-old with dementia will do whatever it takes to maintain her dignity. The difference is that you can teach a three-year-old that her dishonesty has consequences. The person this far into dementia can’t make that connection (though I will argue passionately that she can still do many other things well). So you have to roll with her fiction. If you want to live peacefully, there is no other choice.

A couple of days ago Mom’s key was missing. Stolen! Taken from her apartment on a basket of clean laundry! And the management refused to make her a new key! The whole spiel. Wow, I consoled, that’s awful. You must be so upset. I brought her over to my house for a truly wonderful visit: we had tea, looked at books, sang songs. When I took her home, I slipped the back-up key, on its bright, plastic-daisy ring, into the pocket of her walker, trusting that within a week or so the old key would turn up.

Sure enough, there it was today in her pocket. The missing key. The stolen property. The loot. Less than forty-eight hours after the crime.

I found the spare key and quietly slipped it into my purse. And for some reason, maybe the slight cold I’m fighting off, I lost my temper. No-one noticed; it was quick, and it all happened inside my head. But it happened. You devil, I thought. You had that key all along. Why do you do this?

There’s no answer. She does it because she has dementia. It was a good reminder of how frustrating this is, how angry I used to be all the time, how hard it must be for people who never get a break from caregiving. How important it is to step back, rest, breathe. Laugh.

Perspective is everything. Usually mine is pretty good. But some days . . . some days it gets hijacked. Stolen. Some days, my good attitude goes out on basket of clean laundry. Thank goodness it tends to show back up, exactly where I left it — if only I can remember where that is.




Is there a chance one of your parents might develop dementia? (Hint: the odds of anyone over age 85 developing dementia are almost fifty-fifty. Think about that.)

So there is a chance? Okay, here’s my advice: right now, today, start building solid relationships with the people in your family. You are going to need each other.

Holidays can be difficult, and if you just lived through the Nightmare Before, During and After Christmas, I’m sorry. Relatives do get on each others’ nerves, especially when everyone packs into dear old Aunt Vidalia’s split-level for a long weekend. But those people, those annoying people, are your allies in an upcoming struggle so bewildering it will make a stressful holiday look like a spa retreat. So take a deep breath and tell them you love them.

Now.  Go ahead, I’ll wait.

Yes, I know it’s hard. But try to remember that everyone at this party has a reason to be annoying. Take me, for instance. I was the youngest child, and for most of my life I’ve felt some bizarre need to prove myself to my parents and older siblings (and teachers and bosses and . . . everyone). For years, I have reverted to Baby Sister mode at family events, either keeping a low profile or (heaven help me) going into high gear and trying to control some aspect of the event, just to feel helpful and assert my importance. I still do it sometimes. I can be annoying.

Fortunately, my family loves me anyway.

When Mom turned up with dementia, I found myself coordinating her care with my elder brother and sister, while still believing somewhere in my twisted psyche that they couldn’t possibly see me as an adult. I worried about whether they approved of the decisions – even the suggestions – I was making. Was I being too “helpful”? Or not enough? Was I annoying anyone?  For a while there, finding my new position in the family dynamic was as difficult, in its way, as figuring out how to help Mom.

It would have been exponentially more difficult if we siblings hadn’t built strong relationships long before Mom’s diagnosis. As it stands now, we are a team on a mission, all committed to Mom’s well-being, all willing to take over when another team member burns out. This is what you want.  This is why I advise mending those family fences now.

It doesn’t have to be a big deal. All of my parents’ children are introspective, intellectual types, so we talk through the complexities of the disease and the various models of elder care and how all of this makes us feel. But you don’t have to do that. You just have to get along, so you can make decisions about healthcare and haircuts and laundry and power of attorney.

And so you won’t feel so alone when Mommy or Daddy starts to slip away.

What if you don’t have siblings? Reach out to cousins. We are blessed with a first cousin who visits Mom every single Monday and takes her out for lunch and shopping. (I say “blessed” because this help falls into the category of “godsend”; I don’t know any other vocabulary that comes close to describing her contribution.)

No cousins? Reach out to other relatives. Track down the old folks on your family tree and pay them a call. They’ll be glad to see you and delighted to chat with your loved one, especially if she still knows who they are. (My mom does, and these visits are precious.) An added bonus: your elders will praise you for your devotion, which helps a lot when you’re considering chucking the whole caregiving enterprise and moving to Rio.

Bottom line – you can’t do this alone. And you won’t have to. If you ever have a loved one with dementia, remember: you are surrounded by flawed, imperfect, annoying people – like me – who will help. Get to know them. Trust me . . . you’ll be glad you did.  Thanks to my precious family, I just made it through another holiday season with joy in my heart.

And that, my friend, is the best Christmas present of all.

Siblings, 1961

Siblings, 1961