Do It Anyway – Mother Teresa

I offer the following words from Mother Teresa as a source of inspiration in difficult moments-

for children in Calcutta:

              People are often unreasonable, irrational, and self-centered.  Forgive them anyway.

            If you are kind, people may accuse you of selfish, ulterior motives.  Be kind anyway.

            If you are successful, you will win some unfaithful friends and some genuine enemies.  Succeed anyway.

           If you are honest and sincere people may deceive you.  Be honest and sincere anyway.

            What you spend years creating, others could destroy overnight.  Create anyway.

            If you find serenity and happiness, some may be jealous.  Be happy anyway.

            The good you do today, will often be forgotten.  Do good anyway.

         Give the best you have, and it will never be enough.  Give your best anyway.

         In the final analysis, it is between you and God.  It was never between you and them anyway.

-this version is credited to Mother Teresa. It is thought to have been based on The Paradoxical Commandments by Dr. Kent Keith.

 

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My Dementia Diary 69 – 6501

There are about 6500 spoken languages on Planet Earth.

Based on what I heard come out of my wife’s mouth this morning, I believe there are now 6501.

“Tu mencha ki mo laga pimo meo woo?”

Some might dismiss such an utterance as mindless babble, but as she seemed to be waiting expectantly for an answer, I pondered what I’d just heard.

One possibility is that dementia had restructured her brain’s neural pathways so that she is now communicating telepathically with a life form in a far away galaxy. Following this language logic, I responded-

“Fongu ma blata wo bela vandu urgono!”

I held my breath, hoping my Earthling accent had not spoiled the alien dialect.

She hugged me and turned back to her coloring book.

I smiled. My “of course I love you, dear,” response had gotten through.

Yes, it has been suggested that these strange sounds may not be attempts to communicate with extraterrestrial beings.

dementia may be scrambling my own neural pathways. My retort is-

“Bong atu singu!”

tio stib

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My Life as a Hummingbird

flying, flitting, hovering
buzzing up, around
sometimes upside down
drunk with ambrosia
the sweet nectar of tropical hibiscus
the wildflower buffet of an alpine meadow
a fickle lover
of bright colored beauty

every day a road trip
a life of joyous adventure

When I’m reincarnated
I’m coming back as a hummingbird

assuming I have a say in the matter

tio stib

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My Dementia Diary 68 – Imaginary People

My wife is spending more and more time in conversations with imaginary people. We’ll be eating at the dining table and she’ll suddenly start talking to her son. As he’s in Spain, I doubt he can hear her. She’ll walk outside and begin babbling with an unseen audience in the garden. Perhaps I’m being presumptive, perhaps she does see the people who are not there. She’ll be sitting at her desk working on a coloring project and I’ll hear her sharing drawings with her mother, who is watching television in Mexico.

At first, these conversations bothered me, feeling like another downward step with her deteriorating dementia. Then, I considered the positive side of such conversations-

First, one can have these conversations whenever one pleases, no waiting for family to call or a neighbor to knock on the door.

Next, by initiating such interactions, one gets to choose the subject of the conversation. And no need to wait until someone finishes their boring monologue before you jump in.

Also, these imaginary people, whether they be a parent, a friend, or a world famous celebrity , are going to listen to you, no matter what.

Equally important, if you don’t like the feedback you’re getting from these folks, you can simply abandon them without feeling rude or guilty. Heck, it’s your imagination.

I think my wife has adopted a perfectly reasonable strategy for dealing with a reality that does not fulfill her needs. She simply creates one that does.

If you don’t like your reality, make a new one. Seems like some wise person has already pointed this out, but please let this be my “ah ha” moment as I’m in need of some self gratification.

Do you think this blog and pretending that imaginary people all over the world care enough about me to listen to my thoughts is a similar alternate reality exercise?

Hey, it’s my delusion and I’m hanging on to it.

tio stib

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My Dementia Diary 66 – Retreating

For months, we’ve been retreating, letting go, moving on, saying “adios” to activities, friendships, and family events that no longer fit us.

I say “we’ve been retreating,” but, in truth, it’s only me.

 there is usually a moment of realization, a painful awareness that our life no longer matches up with the lives of others. I decide to stop attending a particular gathering because the combination of my blindness and my wife’s diminishing attention span makes it awkward for us to participate. I decide to avoid family get togethers because the adults can’t deal with my babbling wife and the kids find us boring. I stop visiting friends because my wife’s constant need for attention makes conversation with others impossible.

More and more, we are by ourselves in our small world. Yes, we are fortunate that this world is comfortable, safe, and offers us pleasant opportunities to walk amidst beautiful surroundings. We are also fortunate that there are a few warm hearted, compassionate folks who welcome us into their lives. Still, I can’t pretend that I don’t find this retreat process depressing. 

More and More, I feel like I’m backing into the future, spending more time looking behind than ahead, thinking more about all the things we can no longer do, than appreciating the possibilities we still have.

Yes, I have an attitude problem. I am still struggling with letting go of what blindness keeps me from doing and accepting the reality of my wife’s dementia. In dark moments, find comfort in the stories of other bloggers in similar situations and their supportive feedback.

I have survived and grown through many perilous and difficult times and trust these experiences have prepared me for the challenges I now face.

But I’ve never climbed a mountain like this before.

tio stib

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My Dementia Diary 65 – A Caregiver’s Vacation

There were times when I missed her terribly, then exhaustion surrounded me and I slept. I slept without having to get up during the night to help her find the bathroom. I slept without thinking about how we were going to get through the next day. I slept knowing that someone else was caring for my wife and I could finally rest.

And so passed a week away with a friend, a week when our kids traveled from other countries to care for their mother and her dementia and give me a much needed break.

I didn’t realize how worn out I was until I awoke after one day away, shuffled to the dining table, and heard my friend say, “man, you look really tired.”

I was.

It had crept up on me like an unseen fog, surrounded me during the previous weeks and months. I knew it was there but I couldn’t call it out. I was my wife’s caregiver, she needed me, and our kids, lived in other worlds far away. But one day, when I blew up over some triviality, I knew I’d hit the “help needed” mark. I asked, the kids came, and I made my getaway.

I’m just one of over 15 million Americans who are caring for the estimated 5 million persons suffering from Alzheimer’s or some other form of dementia, all of us dealing with the emotional, mental, physical and financial stress of caring for someone whose mind is deteriorating in front of us.

We all need help. We all need a caregiver’s vacation.

I certainly did.

tio stib

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My Dementia Diary 64 – Holding Hands

we have reached a place
where holding hands
is a pleasure
beyond orgasm

we have become
an incalculable oneness

after miles
years
of laughing, loving, sharing
a life together
I reach
expect
her soft, strong, tender fingers
to entwine with mine

my heart banishes all thoughts
that one day her hand
will not be there

tio stib

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