My Dementia Diary 95 – Returnings

“Where’s your wife?”

The grocery clerks, the drug store help, coffee shop baristas, deli servers, librarians, they all ask the same question. When I return now, alone, to the places we frequented together, they all expect to see the blind guy and his ever cheerful wife. 

But she’s not there, so they ask,

“Where’s your wife?”

And I try to answer, tear up, reach out to hold her hand that isn’t there, start crying, because I’m asking the same question,

Where’s my wife?

tio stib

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My Dementia Diary 93 – A Trail of Hearts

Sorting through her things, my fingers find a shape I know.

a paper heart

A message from a far off place

I love you!

and there are more

she has left me a trail of hearts

with each new discovery
I hold her close
press her memory to my chest

and cry

because paper hearts are not enough

tio stib

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My Dementia Diary 92 – A Tidal Wave of Grief

Suddenly
in the smothering silence of her loss
I am smashed into sobbing oblivion
by a tidal wave of grief

where once there were words of joy
sounds of love
the constant patterings of a life truly shared
there is only emptiness

a vast void

a black hole sucking my broken heart into nothingness

drowning in tears
I am swept away
by a river of silence

yet, gasping in eternal loneliness
I hear faint echoes

I love you

I love you

I love you…

tio stib

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My Dementia Diary 91 – The Last Rose

tenderly
I placed it in her hand
the last rose
the last flower
from the summer garden of our life

she touches the petals to her lips

smiles

and they drive her away

disappear

and she’s gone

oh, how my heart aches for one more kiss
to touch her forehead to my lips
to slowly breathe in the woman
the rose that captivates my soul

but the road is empty now
I’m left alone

wandering a winter garden of memories

tio stib

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My Dementia Diary 90 – All I Want for Christmas is a Good Night’s Sleep

Since the day we were married, we’ve always been together, seldom more than a few feet apart, holding hands as we walked into the adventure of life.

I can’t begin to imagine being without her, but we’ve reached a point where she requires constant 24 hour care and I can no longer do this for her by myself.

As the months have drifted by and her dementia has deteriorated, I’ve struggled more and more to meet her increasing needs, particularly at night. Like many Alzheimer’s patients, night time is stressful for her. She is agitated and confused, can’t settle down to sleep, and gets up repeatedly. I arise with her, help her find and use the toilet, guide her back to bed when she attempts to leave to visit her mom, help her change clothes when she must go walking at 3 a.m., and hug her when she’s shaking with fear. 

Then I guide her back to bed, tuck her in, rub her feet, kiss her, and eventually she falls asleep, until she wakes again and we repeat the cycle.

By morning light, I’m emotionally and physically exhausted. Strangely, she’s not the least bit tired, eager for our daily walk. And a new day begins. To my amazement, she greets all we encounter cheerfully, while I find myself dreaming of a good night’s sleep.

But the price for this dream scares me, for to make it happen, I must let her go, must release her to be cared for by others. This is a day I knew would come, but it’s a Christmas wish I really don’t want to happen.

tio stib

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My Dementia Diary 89 – How to Love a Monster

At 7 a.m. this morning, my normally angelic wife turned into a she devil. For whatever reason, the meds which have kept her mind calm for days, stopped working. suddenly she was agitated, paranoid, confused and the only thing she wanted was to go see her mom, the mom who lives one thousand miles away in Mexico.

And I was blocking her escape, standing in front of the door, keeping her from running outside into the cold, rainy morning.

She erupted, screamed for her mother to help her, started pounding on me. I bit my tongue, remained passive yet firmly in front of the door, finally wrapping my arms around her and flooding her head with calming words. She is quite strong, especially in an agitated state, and it was all I could do to hold her firm until she slowly began to relax.

I let her go and she fumed and ranted about the apartment, finally breaking into sobs and tears. I gently guided her to the sofa and we sat beside each other as I held her close. 

Eventually, she was calm enough for me to suggest we go for a walk, which she agreed to. I’ve found that a complete change of environments is the only sure way to flip her mind from a troubled to a peaceful state.

While walking, she asked me if she was a bad person.

“No, you’re beautiful and loving.”

But as I said these words, I remembered the pain and anguish of her morning outburst.

It is very hard to love a monster, but love is the only way to make this journey.

tio stib

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My Dementia Diary 88 – Our Tightrope

Each day, my wife and I do our dance across an emotional tightrope. the goal is to get all the way across during the day, and then all the way back during the night, all the way without falling. 

These two cycles are based on the effectiveness of her day and night medications. When the little pills do their magic, the dance is relatively easy, she’s in a good mood or tired and she’s easy to lead. But, dancing on an emotional tightrope is precarious. There is little room for error. If I say the wrong words, do something that her mind takes negatively, break the routine that she’s come to expect, she is suddenly off balance, agitated, instantly filled with fear and often belligerent and aggressive.

Once this chain of behaviors begins, I can’t stop it.

We fall.

We fall and crash. There is no safety net. She becomes a person I do not know and I become a husband doing his best to stay calm and reassuring, keeping her from hurting herself, all the time beating myself up for whatever I did to trigger the pain she is going through. 

We never recover quickly from these falls. Sometimes it takes thirty minutes, sometimes an hour, sometimes half the night. She slowly becomes more tranquil, quiet, peaceful. Eventually she will reach out and say she loves me.

I hold her tight and say, “I love you.!

Then we climb back onto our tightrope and start the dance again.

Growing up, I never once thought about running away to join the circus.

The circus, though, seems to have found me.

tio stib

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My Dementia Diary 87 – Harold!

“Harold!” shrieked the voice across my neighbor’s yard.

‘Harold, get in here!”

I and certainly everyone else in the neighborhood now knew that Harold was being called. To my surprise, the man himself, standing on the other side of our common fence watering his flowers, did not seem to notice. In fact, there was not the slightest trace of recognition that he’d heard his summons.

Smiling, Harold said, “that corn of yours is looking mighty fine, almost ready to pick.”

I nodded in agreement.

“Never had much luck with vegetables, so I just stick with flowers,” he added, smiling with pride at his little patch of pansies.

Harold was retired, had a nice head of white hair, excepting for the bald spot which was always covered with some sort of hat, and he was blessed with an eternally pleasant personality. I never knew a mean word to escape from his mouth. I always enjoyed our over the fence chats, particularly when his wife was not nagging him.

“Harold, get in here right now!”

 As he continued drowning his flowers, I realized that while anyone within a block of his house could hear the wife’s belligerent commands, Harold had tuned her out. Not a hint of displeasure, a grimace, nothing showed on his face but that benign smile. Yet his hearing was fine, as evidenced by our continued conversation.

“Fine summer day, don’t you think?” he asked.

“Harold, now!”

I think of Harold’s beatific tranquility when my wife’s pestering neediness is about to drive me nuts. I imagine myself standing beside him watering flowers with a big grin on my face.

But, I’ve yet to achieve Harold’s state of Zen peace.

A few years after his wife met her demise, Harold passed on as peacefully as he’d lived. Out driving, he had a heart attack and his car slowly slowed and stopped against a power pole. I sometimes wonder if, as Harold approached those pearly gates, he heard a familiar voice yell out-

“Harold, get in here now!”

Does God have a sense of humor?

tio stib

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