My Dementia Diary 24 – A Season of Endings

“Too warm!” she told me, standing in the shower.

I realized she was no longer able to adjust the water temperature on her own, the control knob confused her. I turned the knob.

“Better,” she said.

It was another sign, another slip, another reminder of our downward journey together in a season of endings.

We’ve reached a point where what used to be easy, things that were once simple to do, are no longer so. Such changes are not obvious to her, but are painfully so for me. We are slowly sliding down to a place from which there is no return. Knowing this, I’m making every effort to enjoy the precious things we can still do together.

Recently, we took a train trip north to a small town in Oregon for a family reunion. We’ve done this before, and, as train travel is more flexible than buses and planes, it had been enjoyable. However, this time, she was more fearful, uneasy, not able to relax in a setting so different than our home world. This unease continued when we met up with family at a beautiful lakeside lodge. Ultimately, we had a good time, but I was aware of how much my wife’s ability to adapt to different environments had diminished in the past year. I was also aware of how difficult it seemed to be for other family members to interact with us. It occurred to me that it was quite likely the last family reunion we’d attend.

Philosophically, lives end, we all will pass on. Emotionally, this fact is difficult to accept. I suspect that most of the family awkwardness with interacting with us was their own fears about mortality. I wish there could have been more open conversation about this subject, but it didn’t happen. 

Youth does not want to think about the season of endings, but this is a luxury I cannot afford, so I focus on gratitude for the wonderful life we’ve been blessed with, taking each ending in its turn as an opportunity to be thankful for what we’ve had and what we still have.

“I’m taking a shower with shampoo!” she tells me with delight.

Yes, we are blessed.

tio stib

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My Dementia Diary 8 – Sometimes She Knows

She cried last night. She was afraid. Something was unsettled in her mind, but she could not explain it. I hugged her close and kept whispering that I loved her. Slowly, my wife began to relax and eventually fell asleep.

I lay awake and thought about what had just happened. My wife and I have never talked about her dementia, her failing mind. Months ago, when I realized what was happening, I’d wanted to have that conversation, but, by then, it was too late. Her brain could not grasp dementia rationally. Instead, she became angry, upset because she thought I was criticizing her. I’ve not mentioned the subject since. Yet part of her knows that something is wrong.

Sometimes, in the middle of another conversation, she will stop and ask me, “what’s happening? What’s the matter?”

And I hug her even tighter.

tio stib

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My Dementia Diary 7 – The Marvelous Mind

It is estimated that the human mind processes from 50,000 to 70,000 thoughts each day, 35-50 thoughts each minute. All this happens within a mass of about 3 pounds that has over 100 billion neurons fed by 400 miles of blood vessels. No wonder the human brain demands more energy, about 20 percent, than any other body organ.

As marvelous as our brain is, we often take it for granted.

Until it stops working.

Until some neurons stop firing, and a person can’t count backwards from ten anymore.

Until something short circuits, and the brain doesn’t remember who was just on the phone.

Until someone starts stuttering, unable to find the right words they want to say.

Until reality becomes a series of fragmented stories.

Then, we stop taking the marvelous mind for granted. Then we wonder how after spending millions of dollars and countless hours researching dementia, scientists still do not have a single drug that can cure or even help with this condition.

Then we scream in frustration as we watch the person we love fall farther and farther away from us.

tio stib

You might also enjoy: My Dementia Diary 6 – A Shared Life

My Dementia Diary 6 – A Shared Life

“for better for worse, in sickness and in health, ’til death do us part.”

These thoughts are part of many marriage ceremonies, I’ve committed to them myself. Yet, until recently, I’ve never fully grasped their significance.

In the past, the bumps on our life road were never terminal, there was always a way out, there was always tomorrow, things would get better, time was on our side.

That’s not our reality now. Alzheimer’s dementia is no game of the day, not a trivial illness that will go away, we’ve now entered a path that is one way only, and it well end only one way.

Most of us take all measures to avoid the subject of death and dying. In younger years, I was certainly that way. However, later in life, death has knocked on my door several times and I’ve learned to open my heart and appreciate the gift of being with other’s as they end their life journey. Is this tough work? Beyond words. But, so are the rewards.

Being blind has humbled me. Blindness took away many freedoms, many activities and experiences I often took for granted. Our life now, our shared life, is simple. There are no complicated agendas, no long “to do” lists. We get up and enjoy the wonders of a new day. I listen as my wife delights in describing hummingbirds hovering at the feeder, as she greets passersby and talks to children, and reminds me we have to buy more cookies.

Our shared life has become a series of special days. Our special days have become a series of precious moments.

tio stib

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My Dementia Diary 5 – Groundhog Day

In the 1993 fantasy comedy film, “Groundhog Day,”the main character, a weatherman named Phil Connors, discovers that he has become stuck in a time loop where the day he is living repeats itself over and over. No matter what he does, Connors wakes up to the same day, again and again.

Connors soon realizes that no matter what he does, no matter how insane his actions are or how much he messes up, no one will remember. He will wake up tomorrow and start all over again. However, it also becomes apparent that whenever he does something that improves the lives of others, this good carries forward and when he wakes up the next day, the world is better.

I find myself in my own “Groundhog Day” loop, but mine is no fantasy.

My wife’s deteriorating mental condition has resulted in her mind not being able to remember anything in the recent past. This means that when I screw up, as I often do, and say something that upsets her, she gets angry, but in a short time, if I’m patient and let the storm pass, she soon forgets all about what had happened.

I get to start all over again.

My daily focus is my wife’s happiness. Still, my ego, my expectations, jump up and bite me far too often. I say the wrong things. I don’t pay enough attention to her. I get angry at life. She gets upset and pulls away. Realizing my mistake, I go into sooth and patience mode, and eventually we get back to calm again. I store the experience in my mind and the next day, I do my best to avoid a recurrence.

I’m getting smarter at recognizing the triggers that have set me off previously, taking better care of balancing my own needs to minimize frustration, enjoying the purity of my wife’s simple joy of being.

Will I escape this time loop? Phil, committing to make himself and the lives of those around him better, eventually does so through the power of love.

At this point, love is the only answer that holds out hope for me.

tio stib

My Dementia Diary 3 – Doctors and Diagnosis

How is dementia diagnosed? Yes, there are brain scans and other tests that can show evidence of damage that could cause dementia. When my wife had her seizure five years ago, a brain scan was done. A a neurologist whom I trusted, observed no irregularities with her brain. The doctor’s best explanation for the seizure was emotional stress. Dementia was not mentioned. MY wife was in good health, 55 years old, and had no family history of dementia. Yet, within months, changes in her behavior became evident. For many, this is how dementia is diagnosed.

When a person’s mental ability begins to diminish, when memory begins to falter, when daily activities such as preparing a meal become difficult, dementia, although hard to accept, becomes obvious. Unfortunately, by the time such behavior becomes apparent, the disease has significantly progressed.

Further research has led me to several conclusions. Dementia is a complicated disease with multiple symptoms and multiple possible causes. Millions of people all over the world suffer from dementia and the number grows as life expectancy increases. Finally, despite years of research, countless hours and dollars, spent in search of a cure for dementia there is not a single drug available that can successfully treat this disease.

Does this mean that a diagnosis of dementia is hopeless? No, new research demonstrates that for those in the early stages of the disease, there are treatments that can arrest and possibly reverse some forms of dementia. However, when dementia has progressed beyond a certain point, there is no turning it back, at least for now.

This is where I find myself with my wife’s condition. She now exhibits all the symptoms of Stage 2 Alzheimer’s, putting her in the middle of the disease’s typical progression. After recent consultations with several doctors, I don’t think it is realistic to believe that my wife’s condition is going to improve. Instead of continuing a search for a miracle cure that does not realistically exist, I’ve chosen to focus on doing things that maximize our daily happiness. Briefly, this means keeping our life as simple as possible, prioritizing activities that bring us health and joy, and being grateful for our many blessings. No, I’m not giving up on some future development that might successfully treat her dementia, rather I’m choosing to make the most of what we have now.

A walk in the sunshine along the beach, listening to birdsongs, stopping to smile at children playing, smelling the first fragrant flowers of Spring feels like a much better way to live our life together than wasting time hoping another brain scan will somehow change the course of our life.

The internet is full of information about dementia, it’s causes and treatments. My taste for rational scientific thinking led me to Dr. Dale Bredesen’s book, “The End of Alzheimer’s.” Bredsen observes that dementia, in particular Alzheimer’s, is a complex disease. He  offers a protocol that evaluates  a number of proven factors that might be contributing to a person’s dementia. Scientific tests have demonstrated that for some people, treatment of these factors can improve the dementia condition. There is no miracle cure here, rather a thorough and practical approach to understanding and possibly treating Alzheimer’s.

Here’s the link to “The end of alzheimer’s, the First Program to Prevent and Reverse Cognitive Decline.

Wishing you a road to happiness.

Tio Stib