Category Archives: My Dementia Diary

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My Dementia Diary 55 – Socially Starving

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I’m with my wife 24/7, all day, every day, all the time. I never paid any attention to our relationship reality when her mind was healthy and I could see. Being together was a constant treat, always new adventures to share, things to do together. 

And, we could talk, share ideas, questions, and breathe together in awe at a stunning sunset.

As much as we enjoyed each other, we were always organizing get-togethers with family and friends. We could drive, so making connections was easy. We were both functional, making shared meals with others  a simple thing to do at our place.

For a short time, our life was a wonderful balance of precious times together and special moments with others.

Such times are past. Our range of life options has collapsed. My wife’s dementia and my blindness have shrunk our social activities significantly. We no longer drive, so getting out to visit folks beyond our walking radius doesn’t happens unless someone comes for us. This occurs less and less, as I suppose, for most, that socializing with a demented woman and a blind guy is, at best, awkward.

Fortunately, my wife enjoys video calls with our kids, which they are considerate enough to make often. But, as any sort of intellectual, rational conversation is no longer possible with my wife, I find myself craving social contact.

Even though we rarely meet anyone at our local coffeehouse, we visit regularly just so I can hear the drone of other human voices, be near conversations, get vicarious pleasure from being in the middle of people living regular lives.

Slowly, I’m socially starving.

tio stib

You might also enjoy: My Dementia Diary 45 – A Different River, My Dementia Diary

 

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My Dementia Diary 54 – Losing It

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Last night, I lost it. Blew up. Exploded. Screamed.

It was a singular outburst of dramatic proportion, much more than the trivial event which triggered it, tripping on a misplaced shoe. One emphatic yell and it was over, but that was just the beginning.

My wife, who I know is emotionally fragile, takes any evidence that I’m displeased or simply not happy as an indication that I’m upset with her. My scream unleashed a storm of tears. Once started, there is no rational way to calm her down, it’s a matter of patiently waiting for her mind to reset. She’ll bounce angrily around our place, slamming doors, muttering to herself, and then, suddenly, she’ll come back, hug me, and ask me if I love her.

Of course I do, but I feel terrible that my outburst has so upset her.

I make every effort to avoid such venting, knowing the inevitable consequences. She is love on two feet, not capable of any thought but love for me, for anyone. It is impossible to be angry with her. But sometimes I get angry with being blind.

Then I’m angry with myself for causing her pain and vow to never do it again. 

But sometimes I just loose it.

tio stib

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My Dementia Diary 53 – The Walk to Paradise Garden

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In 1946, W. Eugene Smith, a photo journalist who had been severely wounded in the latter days of World War II, was recovering at home, depressed and wondering if he’d ever pick up a camera again. On a quiet Spring day, he noticed his two young children, Pat and Juanita, walking outside in the garden. He followed them and the photo he took has comforted and inspired millions, including me.

I can no longer see this picture, but it is vividly etched in my memory, an image I often recall as my wife and I walk, hand in hand, discovering the delights of our small town world.

The Walk to Paradise Garden.jpg

“The Walk to Paradise Garden,” copyright W. Eugene Smith, Time/Life, Getty Images

tio stib

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My Dementia Diary 52 – Drowning in Sadness

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Because my wife’s dementia is deteriorating slowly, there are times when I forget it is happening at all. then, she says something-

“Do you have a wife?”

We were making breakfast when this question came up. My heart froze.

“Do you have a wife” she asked again.

I hugged her close and whispered, “you are my wife. You will always be my wife.”

“Of course,” she answered, kissing my cheek.

I am drowning in sadness.

tio stib

You might also enjoy: My Dementia Diary 48 – Both Sides Now, My Dementia Diary

 

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My Dementia Diary 51 – Visiting Mom

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She wants to walk over and visit mom. The problem is that my wife’s mind no longer realizes that mom is 2000 miles away in another town, another country.

No need to try and explain this, her mind does not comprehend rational logic. Once more, I’m challenged to adapt to the current reality. 

“Would you like to talk with her?” I ask my wife.

If the answer is affirmative, I dial up mom on the phone and the ensuing conversation seems to resolve the need to connect. However, if we’ve already called mom three times in the last few hours, saving money and mom’s sanity requires another option.

“Sure, let’s walk over to Mom’s,” I’ll suggest.

So we bundle up and go outside and by the time we get to the street, my wife’s mind has moved on and we’re talking about birds, or neighbor kids, or new blossoms on the peach tree.

I find that I enjoy our life together much more when I’m open to it being a continuing adventure of challenges and surprises.

tio stib

You might also enjoy: My Dementia Diary 45 – A Different River, My Dementia Diary

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My Dementia Diary 50 – Marathon Man

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I’m better suited to marathons than sprints. My most satisfying successes have been the result of disciplined and persistent efforts focused on achieving goals over long periods of time. Yes, I’ll admit that such persistence has sometimes turned into close minded stubbornness that compelled me to continue with failed pursuits which should have been abandoned long before. Such lessons had to be learned.

From early on, I was never much of a sprinter, not one to jump into things for quick rewards. Part of this was certainly how I was brought up, believing success demands hard work and disciplined effort. I learned the value of patience and persistence. I also learned that success, or at least success as I’d defined it in the moment, was sometimes something I had no control over. More lessons.

Which brings me to now and my present life challenge, a blind man caring for his dementia stricken wife.

I seem to have been perfectly trained for this opportunity. My personality, my values, my previous life experiences have prepared me well. Yet, while I take some comfort in this knowledge, there is also the realization that this is a race where there will be no celebration at the finish line. 

This is a marathon which must be run one day at a time, satisfaction gained only upon reflection each night when I ask myself-

Did I love as best I could?

tio stib

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My Dementia Diary 49 – Happiness!

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As my wife whistles joyfully nearby while she works on a coloring project, I wonder why I’m not similarly joyful.

Am I happy with my life? No. Am I unhappy? No. Then what am I?

Unlike my wife’s demented four year old mind, I’m many years past childhood. I can remember those happy days, but then life got complicated and so did happiness.

It seems my feelings about “happiness” have been evolving for years. Childish delight and wonder was run over by a need to accomplish things, win races, climb mountains. There was an ecstatic high when such goals were achieved. This was happiness. Of course, I often failed. Then came a life choice, is “happiness” about winning or simply doing my best? Sometimes “yes,,” sometimes “no,” depending on my mood and maturity in the moment.

Enter the paradox of people. My biggest joys have come in celebration with others. But my darkest times have also been caused by people. Another “happiness” question, do I need to get everything I want or is compromise enough? Compromise has become easier over the years. Age has mellowed my need to climb mountains.

Then I lost my sight. I realized that much of what had made me happy were things that I could see. That world disappeared and I became very depressed. It took some months, but I adapted to my much constrained life and found some satisfaction in being able to operate independently. However, I was a long, long way from “happiness” at that point.

Blindness seems to have prepared me for the next challenge, dealing with my wife’s dementia. My much smaller world fits well with her smaller life needs. Happiness for her is a walk to the water, babbling about all she sees and hears, knowing that I’m listening. Making breakfast together is a delight for her. Visiting with friends is the highpoint of her day. I’m able to make such things happen.

I take satisfaction from such service.

Am I happy? No. Unhappy? No. But, at this point in life, I am content.

Most of the time.

tio stib

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My Dementia Diary 48 – Both Sides, Now

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It has been raining in our town, a string of wet, dark, gloomy days that make it easy to stay inside, sit in the easy chair beside my wife as she colors happily, relax, and listen to life happening  around me.

Lost in this oblivion, I heard my mind say, “pay attention-

a familiar song was playing on the radio. It was Joni Mitchell singing “Both Sides, Now.”

Both Sides, Now

Rows and flows of angel hair
And ice cream castles in the air
And feather canyons everywhere
I’ve looked at clouds that way
But now they only block the sun
They rain and snow on everyone
So many things I would have done
But clouds got in my way

I’ve looked at clouds from both sides now
From up and down and still somehow
It’s cloud’s illusions I recall
I really don’t know clouds at all

Moons and Junes and ferris wheels
The dizzy dancing way you feel
As every fairy tale comes real
I’ve looked at love that way
But now it’s just another show
You leave ’em laughing when you go
And if you care, don’t let them know
Don’t give yourself away

I’ve looked at love from both sides now
From give and take and still somehow

It’s love’s illusions I recall
I really don’t know love at all

Tears and fears and feeling proud,
To say “I love you” right out loud
Dreams and schemes and circus crowds
I’ve looked at life that way
But now old friends they’re acting strange
They shake their heads, they say I’ve changed
Well something’s lost, but something’s gained
In living every day.

I’ve looked at life from both sides now
From win and lose and still somehow
It’s life’s illusions I recall
I really don’t know life at all

Joni Mitchell, 1968

These words pulled me into a cosmic pinball game, emotions flashing, as my heart bounced up, down, and around through forgotten memories. Yes, I’d heard this song before, but not the way, years later,  I heard it now. 

I was left with two thoughts-

Joni Mitchell is a heckuva songwriter and musician.

I really don’t know love or life at all.

Both Sides, Now

tio stib

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My Dementia Diary 47 – Whistling

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It’s a good day when my wife is whistling.  Whistling means she’s happy, focused on coloring, and I have time to write.

I’ve learned to play music with words and melodies that spark her mind into activity. One fascinating aspect of her dementia, often reported by others, is that she remembers tunes from years back, but not a word of what I said five minutes ago. Besides her marvelous musical memory, she also demonstrates a talent for mimicry.

When birds sing out on our daily walks, she sings back, chirping and whistling whatever she hears. Although there has yet to be an answer to her calls, she doesn’t stop trying.

I’m fortunate that my wife’s mind still allows her to find delight in life. I’ve been around others with dementia whose confusion and anger made it difficult to care for them. I’ve learned there are buttons I don’t push with her because they will lead to a death spiral of emotions that is difficult to recover from. When such situations happen, as they inevitably do, I tell myself to remember that I’m dealing with a beautiful child who only wants to love and be loved.

And I play music that gets her whistling.

tio stib

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My Dementia Diary 46 – Caring for the Caregiver

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I used to pride myself on my independence, my self-reliance. I’d been brought up believing that real men dealt with their own problems, asking for help was a sign of weakness. Yes, I’ve learned that such prideful small mindedness is foolish. Blindness humbled me.

Still, it’s hard to let go of old habits, such as the notion that I can be the sole caregiver for a wife whose dementia continues to deteriorate. Being blind has certainly lowered my resistance to ask for assistance. I have no qualms about asking a passerby in the grocery store if we’ve grabbed the right kind of cheese or tea. But, when we’re home alone and help is not readily available, I push myself to either find a solution to the problem at hand or just let it pass by as something that doesn’t really matter anymore. Who cares if my wife has matching socks as long as she has one on each foot?

But the daily challenges are increasing. A few weeks ago, I could count on my wife sitting at her desk and coloring happily away for an hour or more. Something has changed inside her brain and now such activity might last only fifteen minutes. The hour I used to have to let my mind get lost in creative writing has disappeared. Now, just when I’m beginning to get into a clear thought, I’m interrupted by my wife hovering over me. She wants attention. She wants to hear that her drawings are beautiful.

Of course they are.

I knew this was coming. I knew when she stopped painting and doing her own abstract designs and moved on to coloring books that her mind was slipping away. I knew that, in time, even the coloring books would be too complicated.

I knew the time would come when the demands of caring for her would overwhelm me.

That time is near.

I’ve begun seeking someone who will visit us for a few hours and help care for my wife, give her the attention she needs so that I can take a break. Someone with a big heart who  connects with my wife’s inner joy and who will free me to seek the quiet peace needed to renew my own spirit. There are no adult day care programs in our town, so I’ll need to build our own.

It is time to take care of the caregiver.

tio stib

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