Compassion for those suffering the shadow land of dementia, and for those who love them

The other side of the true religion equation is caring for widows. In the months leading to my widowed mother’s death last July she longed to be free of her dementia ravaged brain and the bizarre world she crept through each day. When she died, I thought I’d feel peace, for the end to her torture, and for me, relieved of the day and night weight of trying to ease her pain, brighten her life, lift her load, with rare success.

Mom and a great-granddaughterInstead, I miss her wacky presence. I miss having a Mom, even if I’d been the one mothering her for years. Instead of taking care of a widow, I am an orphan.

And I have become extremely sensitive to the multigenerational relationships around me.

I notice the middle-aged woman easing her father out of her car to the wheel chair—often a great challenge in itself—and chatting with him about what he “needs” to buy in the grocery store. I want to hug her and encourage her to keep on.

I also see the daughter or son impatient with their confused or fumbling parent in the doctor’s office. I want to intervene and say:

I know the days are long —

Often the nights as well, if you have your loved one at home, or just can’t sleep because they are on your heart and mind.

I know they can be exasperating, exhausting, argumentative and unappreciative.

I know sometimes you are so bone tired you don’t know how much longer you can do this.

At times you don’t even want to see your “loved one.” And you feel guilty. Somewhere you know, probably unprocessed, they are not your enemy. It is the ravages of dementia you both battle.

And in the midst of it all, you are grieving.

All the little losses of who they used to be, or say, or do, or love

As they lose abilities and you take on more responsibilities, you know this is slow.motion.dying.

It rips you up inside.

My humble advice:

Let go of who they were.

If there is anything at all that they enjoy or respond to now, go for it, in spades.

If I had a do-over I’d give my mother more baths, more back rubs and loads of ice cream, because that’s what really brought a smile to her face, until near the end.

If your once unsmiling, go-by-the-rules mother is all of the sudden giggling at all the wrong moments, giggle with her.

It hurts to see your once proud, successful father muttering in a wheelchair or wearing diapers, but he still needs a kiss on that wrinkled cheek. He needs you, not just folks paid to care for his needs.

If she wants to dance in church, go early and dance with her.

Don’t worry so much about their falling down or getting lost. This is strange coming from one who used to teach American Red Cross classes to seniors about safety, but at this point in their lives, I believe connecting is more important than safety.

Seek every opportunity to relate to whomever you have before you, today.

I believe that even with those who seem to be disconnected, deep inside, your loved one is still there waiting for you to reach in when they can’t reach out.

Waiting to feel loved.

Needing so much the security that only connection with you can give them in the nightmare inside their head.

Find music from their childhood or youth and play or sing it. Sometimes a song can “wake” a person who hasn’t responded in months. I sang in a nursing home to a semicircle of wheel-chaired patients, one in the back slumped over, oblivious. When we started singing an old gospel chorus, she sat up in her chair and clearly sang every word with us. We learned later she hadn’t talked or responded to anyone in months.

Several years ago my sister told me about the book Still Alice. I read it in a wash of tears, and it changed how I looked at behaviors that once confused or irritated me with our Mom. (I’ve heard the movie is also good. If you go, take lots of tissues.)

Impatience turned into compassion.

So cry when grief hits your gut, then wipe your tears and dance, hug, rub backs, and sing.

And hold them and pray, out loud, because their spirit is still alive, hungry for eternal words when the words of this world no longer have value.

1000 Voices for Compassion

There is a movement afoot among the blogging community to stir our readers toward greater compassion.

Crystal Cook's photo.


I’m on board.

As a shy child I was a watcher, and still am.

I see the older sister trying to smile brightly, while everyone fussed over her little sibling, the one who stole her place in the family.

I see the hurt and withdrawal on the woman’s face after her partner cuts her off and puts her down.

I see the homeless man, sunken in on himself as he pushes his cart, all his earthly possessions.

I see the young teen waiting near the high school for a ride home. He doesn’t fit, no crowd to belong to. He plugs in and tunes out, his smartphone his only friend. Does he pretend to be texting, trying to make people around think someone wants to hear from him?

I see the woman who slips in the back, and leaves early, so she won’t have to feel the emptiness of friendship swirling around, leaving her out.

I see the teen girl – way more of her than I’d like – trying so hard to matter, not knowing she’s worth so much more than skin and sex.

I see the woman with the scarf tied round her head, holding tightly to this life as chemo gives her hope, but steals her strength, and more.

I see all of that on one, normal day in an affluent, safe town in Florida.

Bario Los Fuertes from water Roatan , Honduras, CA
Bario Los Fuertes

What I saw in Honduras, like most third world countries, was often very painful.

Gaunt women hauling firewood, balancing a bucket of water, two or three bare-footed little ones trailing behind.

A girl not yet a woman giving birth on an earthen floor, her walls found-cardboard, and her only companions huge roaches.

A man who can’t find his way home after drinking all night, slashing his friend with a machete.

A little boy burned over 75% of his body from a kerosene cook “stove” made from a large can.

A lame diabetic woman left to her own resources, until the stench of gangrene in her leg drives her neighbors to call for help, too late.

Dona Estefana, Bario Brick Bay, Roatan, Honduras
Dona Estefana

All around the world we can recognize pain, if we have the eyes to see.

But only if we are willing to feel, because we can’t really see if we aren’t willing to feel, too.

I know, we don’t really want to think about and see children tricked or kidnapped into sexual slavery.

Or masses of people abused because of the color, gender, or social status they were born into.

Thousands driven out of their homes, and many murdered, in the name of religion, their children growing up in refuge camps.

And what of the pain we can’t see with our eyes?

Only the heart sees the pain

of the death of a child or mate,

of miscarriage,

of bareness,

of abortion,

of child abuse covered and ignored for years,

the singular pain of being “other,”

of being alone.
Woman in Switzerland by Jack H Thompson

Because I see, I can so easily feel overwhelmed.

After about four months in Honduras, I collapsed and cried, “I don’t want to see one more poor, miserable person!” My husband reminded me that taking care of the world is not my job. Not even Tela, Honduras. I can only change what God puts right in front of me to do.

So, with open eyes, I look, I see, I feel.

For many, just being SEEN is a gift.

Sometimes I can take action, but more often all I can do is care, and pray.

And we can all benefit from a prayer, can’t we?

To drive away the darkness, strike one match.

Take out your heart of compassion.


Light one candle, however you can.

Are you on board?

Eternity in our hearts

How are you doing with your New Year’s resolutions? Perhaps you’ve achieved some, but haven’t found the satisfaction you expected. Like the child on Christmas afternoon, he bursts into anger over some small thing, bewildered by the disappointment the eagerly awaited day has produced. Goals are good things. Trying is important. But nothing really, completely satisfies.

CS Lewis Mere Christianity
Made for another world

In a few days, I will mark six months since I walked with my mother to the door of death. And the strange heaviness, though not my constant companion as it was the first months, has still attacked me at random moments – entering the grocery store and seeing something I should buy for her – opening my cabinet and finding her measuring cup – planning a day trip and wondering if she’d enjoy the ride – hearing something delightful from a grandchild and anticipating sharing it with her.

Mom on Pensacola Beach sand dune
Mom on Pensacola Beach sand dune

A few nights ago I had a dream. Occasionally I have dreams that are vivid, clear and more real than being awake. This was one of those.

I was standing by a large body of water and called out, “Who wants to hear what I’ve been writing?” My mother swam towards me and climbed out of the water, full of life as she was the last time we played in the Gulf of Mexico in Pensacola Beach. She wave and replied, “I want to hear it, Janie-girl!” and climbed out.

As she drew closer, she grew weaker, and by the time I helped her onto a lounge chair she had shriveled into an invalid. I covered her with thick blankets to quell her shaking. Between chattering teeth, she encouraged me to begin reading Listen the Wind, the historical novel I am putting the finishing touches on, and she had edited for grammar and spelling errors when her mind was still sharp. As I started to read, we were on higher ground, looking out over the water, and she was in a hospital bed, growing weaker.

A sweet, clueless nurse, brought her food. Mom shook her head and turned toward the water and the bright sun as it moved toward the horizon. The nurse kept offering smaller bits, encouraging Mom to eat and gain her strength.

Bartholomew sunset by J H Thompson
Bartholomew sunset

When the smallest piece, a little brown biscuit was offered, Mom pushed it away and whispered to me, “Don’t you see what really matters?”

Then I saw what she was so concentrated on in the splendor of the sun glowing over the water,
calling her to eternity.

Bird in clouds by Jack H Thompson
Bird in clouds

And she was gone.

I awoke in the early morning light, tears streaming down my face, with profound peace. I knew that my mother, who most of my life hadn’t understood me (we were very different personalities) deeply loved me and valued my writing.

In my dream, I felt as if she had shared a measure of eternity with me, to encourage me in my journey.

The sense of eternity stayed with me, carried me through the day.

I no longer wish I had another chance to hug her or bring her ice cream or talk with her. She has reached her goal —

the goal we are all yearning for, whether we know it or not.

We all have eternity etched in our hearts.

So, if you don’t achieve all your goals, or complete what you have planned, or even if you do, and it doesn’t satisfy, you can rest assured that it was meant to be.

You were created for so much more.

Eternity on golden clouds photo by J H Thompson
Eternity on golden clouds

Let’s chat:

Have you had an experience that gave you a larger perspective on your life?

What would encourage you right now?