My Dementia Diary 20 – Surrendering

Some goodbyes are more difficult than others. Some are ultimate and final. Youth seldom recognizes such moments. I don’t remember the last time I saw my grandfather. Busy with my seemingly endless life, I just realized one day, I’d never visit with him again.

With age comes perspective, the broader vision of experience, the knowing that a change that has happened signals an ending.

Blindness was such a moment. I knew and deeply felt that my life would never be the same again. I knew that huge pieces of me, the things that had defined me, were gone. yes, this was absolutely mind blowing and left me numb and depressed for months. Eventually, I began to adapt, to re-invent my life. Never once did my wife stop loving me or lose her cheer, even as she began losing her mind.

Now, some years into our altered journey, I wonder about our parallel disabilities. I wonder how being forced to surrender my previous active, get out and go everywhere lifestyle, has enabled me to be a more complete and compassionate partner for my wife as her mental disabilities have deteriorated.

Our mutual disabilities have forced us into a much simpler lifestyle than I’d imagined would ever be our case. Yet, in this simplicity, in this smallness, has come a richness, a deeper appreciation of the details of the world around us, little things we look forward to. Hummingbirds at the feeder. Greetings from neighbors as we walk by. the fragrant scents of Spring flowers. The sounds of children playing in the schoolyard. Roses outside our door.

Surrendering once seemed to signal a finality to good, an ending that no other beginning could replace.

But, indeed, there have come new beginnings, each with its own richness and so the wonder of being continues to amaze me.

tio stib

You might also enjoy: My Dementia Diary 19-Babbling, My Dementia Diary

My Dementia Diary 19 – Babbling

At times, I’ve heard my young nieces, intent on playing with their dolls, babbling as they travel in imaginary worlds. This is quite normal for girls of their age. Not so for my wife, well into her sixties, who now talks incessantly to no one. She babbles.

If I work to understand what she’s saying, there are fragments of reality woven into larger stories. Mostly, though, her words are simply chatter, nothing that makes any kind of sense.

The good news is that her babbling is happy, sometimes she’s even laughing and whistling as she patters about. I’m quite glad about this because it’s obviously much easier to live with a joyful person than one who is angry and upset.

still, I do think about what is happening to her mind, the continuing deterioration of memory, the further separation from reality. then, I stop. Overthinking our situation does me no good. I’ve found it best to simply appreciate the blessings we still enjoy.

I count joyful babbling as one of those blessings.

tio stib

You might also enjoy: My Dementia Diary 18 – The Last Posole’ Party, My Dementia Diary

My Dementia Diary 18 – The last Posole’ Party

this past weekend, my wife and I had a posole’ party for friends and neighbors. Posole’ is a traditional Mexican soup served for special occasions and we’ve hosted such gatherings many times. When we first started doing this, my wife would prepare the posole’ from a recipe she’d learned from her mom. As her mind has deteriorated, I’ve picked up more and more of the process until, now, I’m the cook, and my wife the assistant.

Part of the challenge is procuring groceries, a process requiring us to walk downhill to the store and lug the needed items back up the hill. There is always a second trip because I always forget something. I put these efforts down to healthy exercise. The larger difficulty is emotional and mental, staying patient and caring as my wife becomes more and more anxious about the coming event, asking the same questions again and again. Who’s coming? When are they coming? Why are they coming? Who’s coming?…

As much as she enjoys the thought of company, she is also fearful that someone is going to take her things, so she begins to hide and cover them up. Still, we got through this and by mid afternoon the posole’ is simmering on the stove, our home filled with the sumptuous aroma of good things cooking. My wife is excited but needs hugs and assurance that all is well. 

Guests eventually arrive amidst smiles and laughter and all gather around to share a delicious meal and the opportunity to connect with each other again. My wife is happy, basking in all the love of the moment. Yet, I notice that she is not able to enter into conversation, most topics are too confusing for her. She retreats to the kitchen to do dishes, babbling joyfully to herself.

The evening winds down, friends depart, my wife and I hug, feeling good for the party’s success, but too tired to clean up after it. 

As I sat sipping tea the following morning while my wife engaged in her favorite pastime, adult coloring books, I reflected. yes, the previous night’s event had gone wonderfully well and it had been a great gathering. My wife had enjoyed it. Yet, I was beat. Certainly, the effort had been worth it, but would I ever want to do it again? perhaps it’s time to quit on a high note.

Time will tell.

tio stib

You might also enjoy: My Dementia Diary 17 – Hiding the Cookies, My Dementia Diary

 

My Dementia Diary 12 – My Grandfather’s Clock

There is a clock sitting on the shelf near our bed. It belonged to my mom’s dad and was passed on to me, making it my grandfather’s clock. Over a hundred years old, this timepiece is relatively small, meant to be set on a fireplace mantle, but it has a surprisingly vibrant chime. There are no batteries within, its mechanism driven by a coiled brass spring, which I wind weekly with a dozen turns of a key. For this effort, I am rewarded with a melodious chime counting out each and every hour.

I take comfort from these chimes, from the tick-tock of the ever swinging pendulum, an aroused awareness that time is now. I wonder if my grandfather, my mother, other family members, felt a similar connection.

I’ve lived more than 600,000 hours so far, a surprising number when I attempt to remember the breadth of my life experience. what happened to all those hours? The more important question, what will I do with the hours I have left?

Each tick of that clock is a moment I will never have again.

How many more chimes are left in my life?

How blessed I am to have had so many hours of being.

As my wife sleeps peacefully beside me, I again find comfort in the tick-tock of time, past, present, and future, and I drift away in hopes of hearing the morning chimes once more.

There’s an old folk song that beautifully expresses my sentiments, perfectly named, “My Grandfather’s Clock.” Here’s a link to a Johnny cash rendition

tio stib

You might also enjoy My Dementia Diary 11 – Morning Bliss

My Dementia Diary 11 – Morning Bliss

After several weeks of blustery cool and wet weather, today dawned warm with azure skies. We started out on our daily walk with one less layer of clothes. I’d even gone so far as abandoning my jeans for shorts. The Spring air, the melodies of newly arrived songbirds, my wife’s constant flow of delighted descriptions of happenings around us, was blissful.

I was suddenly struck with how fortunate we are to have the life we live, a peaceful and safe town closely connected to Nature, nearby friends and convenient walking access to all our daily needs, a comfortable and affordable home.

Given the challenges dementia and blindness present us, it’s hard to imagine how we could have a better living situation.

On top of these blessings, is the gift of still being able to share the simple joys of living in such a perfect place with my wife. True, we no longer have any sort of deep intellectual conversations, yet we can enjoy the little things. Ice cream cones and hot dogs. Tea and cookies. Hummingbirds at the feeder. the honks of Canada geese flying overhead. The smell of the beach at low tide. The laughs of children at the playground. “Hllos” and “How are yous” with neighbors and passersby.

My wife has become my eyes. through her childlike curiosity and delight, I am able to enjoy the world around us.

For this, I am deeply grateful.

tio stib

You might also enjoy: My Dementia Diary 10 – Where’s the Spatula?

My Dementia Diary 10 – Where’s the Spatula?

Blindness has changed how I operate in the kitchen. Spontaneity has been replaced with disciplined order. When preparing a meal, I first seek and lay out all I will need on the counter. This avoids frantic searches at critical moments, like where the heck is the pasta as the water is boiling over.

My wife’s dementia has added a wrinkle to this process. In her desire to help out, she follows behind and cleans up after me. I’ll be cooking hot cereal on the stove, turn to pour it into bowls I’d previously placed on the counter, only to find the counter empty. She has put everything I’d laid out away.

I certainly can’t fault her intentions. She wants to feel like she’s helping out, an important part of our life. The first time this happened, I was puzzled, wondering if I was losing it. Then, I was frustrated when I realized what she’d done. Finally, I started laughing, hit by the comical nature of what was going on.

There is another twist that is happening more and more. She has begun putting things in what I first thought are strange places.

Based on the afore mentioned cooking process, I was making pancakes. As you likely know, this process involves pouring the batter into a frying pan and then, at the appropriate moment, flipping the pancake over to cook the other side. To do this, you need a flipper, commonly called a spatula. the moment came when I needed to flip the pancake and I turned to grab the spatula. My hand searched the empty countertop.

It wasn’t there.

“Where’s the spatula?”

I often forget that asking a person with short term memory loss where something is will not result in a helpful answer. this time was no exception.

I opened the one drawer in our kitchen that serves as home for silverware and utensils and frantically rummaged around to find the spatula.

It wasn’t there.

At this point, my nose told me that there had been a death in the frying pan, my dreamed of pancake was now charcoal. Resigned to temporary defeat, I tossed the crispy breakfast failure into the garbage and resumed the hunt for the spatula.

I eventually found it, and its location was logical in a functional way. My wife’s mind had chosen to put the spatula down with the frying pans instead of in the utensil drawer. That makes some sense, although in the immediate moment, I was not so broad minded. Since that episode, I’ve come to expect such things. Bowls no longer end up on the shelf with other dishware, but in the cupboard beside the cereal. Dish clothes end up hanging on the dining room chairs. No, I have yet to come up with any logic here.

Fortunately, our studio apartment is quite compact and when I’m unable to find something, I’m comforted by the knowledge that it’s somewhere close. The other blessing is that as my hands search for missing things, they often discover other misplaced items. Finding stuff has become a treasure hunt.

I’ve also learned to put the spatula on the stove when it’s going to be needed, knowing my kitchen helper will be less tempted to hide it from me.

The adventure continues!

tio stib

You might also enjoy My Dementia  Diary 9 – Adventure Buddies

My Dementia Diary 9 – Adventure Buddies

She never says, “No.”

My wife has been the perfect adventure buddy. No matter what I suggest, no matter where we go, she never says, “No.” Instead, she embraces the moment, delights in new experiences, finds joy in whatever we’re doing.

Let’s go camp on top of Mt. diablo and watch the sunset.

Let’s go.

How about we take the train to Klamath falls and go fly fishing/

Let’s go.

I need a break, do you feel like a sandwich at the deli?

Let’s go.

Cars, planes, trains, new people, new places, new adventures.

Let’s go!

I often smile as those memories drift thru my mind. Blindness and dementia now limit our travel radius, but she still never says, “no.”

She always answers, “let’s go!”

tio stib

You might also enjoy My Dementia Diary 8 – Sometimes She Knows, The Joy of Adventure Buddies