Salt Lake City

Sometimes It Just Takes A Good Cry

This should have posted previously. (March 10, 2010) I wrote it just before I left, over a month ago. I post it now, so that others will know caregiving, like life has many different kinds of moments. None last very long. You just have to go with the flow. – Debbie Schultz

This morning the sun shines gloriously after a hard rain. Surrounding me the world is bright green, and sparkling blue, with sun glinting on the delta from my son’s backyard.  All seems right with the world. I will be on my way home in a few days; back to Utah and my mountains. The snow is gone from the streets and spring is peeking through, or so my husband says. These last few days I have really been homesick and it feels good to say that Utah is my home, an ambiguous phrase that I couldn’t say before I left a month ago.

Taking care of my Dad has been one of the most challenging experiences I have had in my life.  I did the best I could, and I could not have done anything else. Whether the systems I have set up work remains to be seen.  He has good, kind people caring for him in his home. They may not be able to meet his needs if he continues to get more combative and difficult to keep clean. Unfortunately another one of the evils of this disease is the patient is often his own worst enemy.

Before I cared for my Dad, I thought families who put loved ones with Alzheimer’s in institutions were somehow copping out. Now I know that each family makes their decision based on their own resources and abilities. For some it is an easier decision to make than others. I don’t know what my father was like right before the accident, I just know that caring for him has been really difficult. I cannot, however, excuse the treatment of turning people into vegetables, hoping they die quickly. I feel he was treated that way in the hospital: sedation, catheterization, tube feeding or no feeding. The will to live is given up very easily in those circumstances.

What the answer is, I don’t know. I feel a huge responsibility in leaving. I know when I get home I will worry about how he is getting on. On how both of my parents are coping. If the caregivers work out and can handle both of my parents? Will my mom be able to heal while still worrying about my father? I know I will be back soon, but I am not independently wealthy and I have a family and business to run in other places.

So yesterday among all of these conflicting feelings, and burdened by the enormity of everything, and the difficulties continually surfacing regarding my father’s care, I had a good, hard sobbing cry. And then I watched some tender movies and cried even more. Like this morning’s early rain I now feel cleansed, and I’m ready to continue forward doing the best I can, while trusting in a God who sees the whole situation and will someday answer all of  my questions.

Originally posted 2010-04-28 03:54:10.

THE ROLLER COASTERS

rollercoaster

The ups and downs of Alzheimer’s can be worse than any roller coaster ride.

I dislike roller coasters. From the first time I visited Play Land At The Beach, which was   a very long time ago, I was wary of the ride – intrigued – but wary.  The ancient granddaddy of fun loomed over the rest of the concessions like the skeletal mid-section of a mythical dragon; a grayish monstrosity of what appeared to be old pieces of weathering wood which I believed to be untrustworthy even when I was young.

The amusement park was located right across from the Pacific Ocean at the end of the Great Highway and just a short walk south from San Francisco’s famous Cliff House.  Even as a pre-teen I could hear the rickety structure clickety-clack and rattle as each line of speeding cars roared up and down the  mountains of lumber and track finally screeching to a jolting halt at the end of the line. Frightening, yet I was fascinated.  “Oh come on you big baby,” badgered one of my older sisters.  “You’ll love it.”  Scary though it was, I wanted to love it like everyone else.

The three of us climbed into the seat, the attendant dropped the safety bar as my sisters warned, “Now hang on and never let go or you might fall out.”  Fear griped me and we were off. Climbing up was all right, but the descent was horrific. I hated every blood-chilling moment.  Furthermore, with each threat of death I repented of all my sins – however many sins a pre-teen could accumulate – I was penitent.

Time and time again, whenever I visited Play Land at the beach with my sisters and friends I was coaxed back onto the roller coaster with the promise from someone, “Oh, you’ll like it this time.  You just have to get used to it.”  Fear-stricken, I repented once again promising to be ever so good.   Still, I hated my skinny little body getting bruised, slammed and thrown about with each jerking turn.  With my eyes squeezed shut I could have been riding on the back of a mystical dragon with its tail twisting back and forth threatening to toss me high and away into the great unknown.  Minutes later and peeking out from the safety of my closed eyes we were facing the last invisible decline over what seemed to be the edge of the world. Terror froze deep in my throat while other passengers screamed and shouted with glee.  Suddenly the ride stopped, the dragon vanished and we girls stepped out of our cars into the laughter and happy shouts of Play Land At The Beach.  I was safe.

As an adult and the mother of five grown children not much has changed regarding roller coasters except they’re bigger, better and faster as they race over the modern, steel-supported network of tracks.  Ken loved them, and always did.  He was probably one of those smart-alecky kids who laughed, yelled and held his hands straight up in the air on every downward dive.

At Great America, where we went for a family day that roller coaster not only did the up-and-down thing, the tube-like car also spun in circles.  “You’ll like this one,” Ken had insisted.  “Come with me.  It’ll be fun.”  It wasn’t.  I repented again — and then found the ladies room where I lost my lunch.

Feeling sorry for me we had a 7-UP to settle my still-pitching stomach and found my kind of ride: those cute little boats that carry you through a maze of tracks onto an intermediate slope sending the passenger-filled boat into a boxed-in lake where, for thrills, you get a good splashing of water.

With roller coasters, Ferris wheels, merry-go-rounds, and even little boats now a part of our past, Alzheimer’s has brought us a new kind of roller coaster.  This one too is a dragon; its tail flipping our energy and emotions in every which direction. I don’t like this one either, and if Ken had his wits about him, he would be on my side.  Nevertheless, we’re both along for the ride whether we like it or not.  Unfortunately, there is no jolting stop where either one of us can get off – save it be death – or somehow a miraculous cure.  So we endure.

There are times when I see him fearful, as I was on that very first ride.  I know he is plunging into a down mood. “No!” he shouts.  “I’m not going.”  Going could be anywhere he doesn’t believe he wants to go, or it could be just his way of being independent, or believing he must make a decision and not being certain he automatically says, “No.”  Nevertheless, he means no — no to showers, to eating, to bed, for a ride, for a walk or to visit the doctor.  We might as well take him into the House of Horrors because he has that same expression of unknown fear in his eyes.

Later, when his mood changes to up and he sees me not only as someone he recognizes, but as his wife who he invites to sit beside him on the sofa.  I do and he puts his arm around my shoulders saying, “I love you.”  I sit closer and rest my head against his chest — snuggling in — and for a while it feels like old times: reassuring and good.  His face is relaxed and he smiles when he looks at me.  For a while he is calm and quiet.  We sit for as long as he’s willing — for as long as the up mood lasts.

His face begins to puzzle and I move away to prepare a simple dinner hoping to have it finished before he becomes hostile.  Cleaning his plate with a crust of bread, his eyes begin shooting daggers at me.  “You don’t belong here,” he hisses, “get out of my house.”  I pretend to be accommodating and when he gets up to make certain I’m leaving I close and lock the kitchen door behind him.  It’s good for Ken – and me – to take a break.

Quietly I watch him from around corners, and through a slit as I barely open the door.  He seems more peaceful sitting in a living room chair all by himself.  His mood is changing once again.

“It’s cold in here,” I remind him in a little while knowing the ride is taking him up.  “Do you want to go where it’s warmer?”  He ponders my question and then makes an excuse about why he can’t abandon his post or adjourn his imagined meeting.  I leave and try again minutes later – hoping he has forgotten my earlier attempt to get him into bed.

“Okay,” he finally agrees, his eyes groggy, and he follows me into the bedroom.  The covers turned back, he sits on the edge of the bed.   “You can put your feet up,” I suggest.  “With my shoes on?” he asks.  “Whatever you want,” I reply.  When he understands he still likes to make his own decisions, and then he kicks off the moccasins pulling his feet up onto the bed.

I place a blanket over him in much the same way I covered his children all those many years ago. “There,” I ask, “doesn’t that feel gooood?  Sooo nice and warm!  He is smiling, his eyes inviting.  “Do I get a kiss?” he asks.  “Of course,” I answer leaning over kissing him softly, gently; one more time as he whispers, “Goodnight.  I love you.”   “I love you too,” I reply, turning out the light.

The switch also closes the lights on the day’s roller coaster.  We’ve traveled through the gambit, which included Ken spitting in my face during the morning clean-up time with Ben, gouging my arm even though his fingernails are closely clipped, to the lovingness of a goodnight kiss.  Today is done, and I sigh with relief.  Some days the ride is more stressful than others, but no matter, we are forced to continue.  I hate the Alzheimer’s roller coaster more than all of the other electronic ones combined.

A few years ago, when his illness was milder, my sister asked, “How can you stand this day after day?”   I answered, “You just learn to live in the moment.  Don’t lament about losing the good times, or even begrudge the bad.  What we know for sure is that no matter where we are in any moment of our life it will change,” reminding her of our youthful pleasures and how happy those days could be, but they didn’t last and when they were gone we felt so wretched.  “Remember what Mama used to say to us during those down times — when we believed that life would always be the pits – she would remind us, ‘And this too shall pass away.’”

We all know that we can beat our chests and cry into the wilderness about how unfair life is, but it doesn’t change anything.  We can ask, “Why me?” but there is no answer to that question.  We can be miserable and sad — or accepting – and in the accepting we can enjoy the small fragments of happiness which still come into our lives and are part of the ride.  There’s more than one way to ride the mystical dragon.

 

Originally posted 2011-01-23 04:46:07.

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