Today is our wedding anniversary. Although my wife’s mind no longer recalls that special day, I remember the vows we made to each other-
to have and to hold
from this day forward
for better for worse
for richer for poorer
in sickness and in health
until death do us part
I don’t think anyone can really anticipate “for better for worse, in sickness and in health.” You just do your best and gut it out when the stuff hits the fan. That said, I don’t think you can really appreciate the intimate immensity of committed love until you have suffered through such trials with a partner.
What I most remember about our wedding day was thinking that my wife was the most beautiful woman in the world and that I’d never seen her so happy.
I’m now blind and she has dementia, but my wife is still the most beautiful, radiantly joyful woman I’ve known. She has pushed me to be a better man and given me more blessings than I’d ever imagined.
lost in the bliss of slumber
I’m prodded awake
hear her pleading
help me
she stands beside the bed
naked
shivering
help me
it’s 4 a.m.
she has shed her pajamas
and there are no words
no rational arguments
nothing will quell her demented need
to get dressed and go for a walk
I will myself up
take her arm gently
lead her to the closet,, a chair
and begin, as we’ve done so many times
to dress her
underwear, socks, shirt
guide her legs into pants
her arms into a jacket
I place shoes by her feet
and leave to use the bathroom
relieving myself,
the same question haunts me
how did I offend the gods
what did I do
to create this nightmare
I hear a whimper
she’s standing in the doorway
clothes discarded
naked in the night
We don’t do sudden impulse road trips anymore, those wild moments when we would throw stuff together, hop in the car, and head out for parts unknown. Instead, a rash trip for us is a walk down to the drug store for an ice cream cone.
We don’t do drop-in gatherings with friends now, those spontaneous get togethers where wine and finger food would just show up and the buzz of excited conversation filled a shaded patio. We don’t get those invitations anymore. Do you think the fact that most of what comes out of my wife’s mouth is babble has something to do with this?
There are no longer any discussions about what we’ll do today, or this week for that matter. Such rational exercises are not possible with her dementia. All the planning is on me and I keep things as simple as possible.. While predictability used to annoy me, I now find order and stability comforting.
I’m having difficulty letting go of the delusion that a blind guy and his wife with dementia are a “normal” couple. Fortunately, life keeps slapping me in the face, reminding me that we’re not.
The truth is, we’re both disabled, we’re older than most of the people around us and have a radically different lifestyle. . We don’t drive. We don’t go on vacations, don’t participate in any community organizations, and our kids are grown and gone.
In truth, to most everyone else, including family members who live nearby, we’re flat out boring and awkward to deal with. So they don’t.
I’ve been pretending, hoping, this was not true, but, it’s time I face the facts.
We keep downshifting through activities as my wife’s mental ability to entertain herself continues to diminish. Once, she enjoyed painting vivid abstracts and would do this for days. When that became too complicated she moved to coloring books. As her coloring projects no longer lasts more than a few minutes, it was time for something new.
Enter “FaceTime Karaoke.”
No, this is not a term you will find on Wikipedia because I made it up. It involves a video call with one of our kids with the addition of another device playing Mexican pop tunes. My wife immediately bursts out singing, and this impromptu concert goes on and on. It’s amazing how she seems to remember every song.
Music therapy is nothing new for dementia patients, rather, it’s recommended. For some reason, yet to be explained, Alzheimer’s destroys many parts of the brain but skips the part that stores and remembers music. Some reason this is because music is a complex array of sounds and emotions stored in a unique place. All I know is that my wife can’t think rationally or remember what she had for breakfast but when she hears those songs she learned fifty years ago, music erupts joyfully from her mouth.
Score one for technology, which allows us to connect intimately with family in far away places, sharing the fun and memories of songs they grew up with.
Yes, I’m careful to add nothing more than a little background percussion as it has been noted that my voice would embarrass a drunken frog.
We’ve entered a new phase in our caregiving adventure, the part where my healthy, energetic demented wife, who buzzes around tirelessly during the day, now sleeps a few hours in the evening, then buzzes around, and up and down, all night too.
The problem is that she used to sleep soundly all night, and this quiet time was when I rested after hours of caregiving. Now, when I’ve finally drifted off to dreamland, I’m suddenly prodded awake and hear a voice in my ear demanding repeatedly,
“Help me!”
And she really does need help. She’s cold, or afraid, or can’t remember where the bathroom is, and once there, what to do next. So I get up, but not with a smile and cheerful “sure thing.” More like the growl of an angry bear awakened prematurely from hibernation.
Unfortunately, my 2 a.m. growling sends my wife into an emotional tailspin requiring at least an hour of patient calm talk and hugs to successfully guide her through the required bathroom procedure and back to bed again. realizing that this process isn’t working for either of us, I’ve decided to adopt a strategy used in my wilder years when crewing on long distance sailboat races.
These journeys lasted for days and so the crew broke up responsibilities into shifts, called watches, when members were either on or off duty. For example, “A” Watch might be on duty from midnight until four a.m., then “B” Watch came on from four until eight A.m.. Yes, it was tough to force myself awake and out of my warm sleeping bag cocoon when I heard the call, “B Watch on deck!” but I was part of a team and I had a responsibility to fulfill. Complaining wasn’t going to change that.
I’m on another long distance race, caregiving for a wife with dementia. There are two shifts, “D” Watch for day, and “D” Watch for dark. Yes, I know the two shifts have the same name, but as this boat only has a caregiving crew of one, I’ve decided not to confuse myself. When I lie down to sleep at night, I repeat “D Watch on deck!” as a reminder not to growl at my wife when she will certainly wake me later.
As our circumstances change, I continue to adapt, as does my wife. Apparently, she decided that prodding awake a hibernating bear was producing undesirable results, and so has adopted a new strategy. She carefully fulls the covers off the bed, leaving me naked and exposed to the cool night air. When I reach reflexively to pull the covers up and don’t find them, I rise up to search. This is when I hear the voice nearby,
”Help me!”
Damn clever, hard to get mad at such cunning, even at 2 a.m..
Looking back on our life with dementia, I realize my wife and I never had “the Talk.” We never sat down, cried, agonized, shared our fears and feelings about the difficult road in front of us.
Listening to recountings of other couples on similar journeys, I’ve often heard about how they worked together to plan and prepare for the disease that was going to suck the life out of one of them.
We never had these conversations, never made plans together, it just didn’t happen.
Partly, that’s because one of my wife’s many endearing qualities is that she lives in the moment, and after the moment, the day, and after that, maybe the week. I’ve never known her to think much beyond that. I’m the strategic thinker in the partnership while she keeps me grounded in “be here now.”
Also, I believe that her dementia actually began affecting her quite some time before it became obvious to others. There were occasional episodes of memory lapse and emotional strangeness that were discounted at the time, but perhaps were early indicators of a lurking problem.
When we finally found ourselves listening to the neurologist telling us my wife showed symptoms of dementia, I don’t think she could grasp what the doctor was saying. Hell, she felt fine, life was good, so what if she forgot a few things.
That was six years ago. My wife and I never had “the Talk,” and what good would it do now? Yes, I do have an ongoing dialogue with the rest of the family about how to best care for the woman we all love, helping her to have. each day, a healthy and happy life.
She does ask me sometimes, when she thinkspeople are talking about her, “am I crazy?”
Don’t it always seem to go
that you don’t know what you’ve got ’til it’s gone
Joni Mitchell, “Big Yellow Taxi”
As I listened to Joni sing about paving paradise, I realized I’ve recently lost two big things in my life.
Sex and fishing.
Fishing used to be my soul food, what I craved when life went sideways, dreams were slipping away, or I just needed a break from the human race. My typical fishing trip was an impetuous decision to get out of town, followed by tossing rod, clothes, and snacks into the car and heading out. I had some trusted spots and a mental list of obscure places on the map that had possibilities. I was often several miles down the road before a clear direction became obvious. Location really didn’t matter much, I just wanted to be standing alone in a stream, feeling the sun’s warmth on my face, filling my nostrils with the invigorating air of wildness, casting a fly towards some trophy fish fantasy.
One of the many blessings of our marriage is that my wife found fishing intoxicating too. I remember her excited squeals when she caught her first trout and her delighted giggles as she released it and watched it dart away. I remember looking past her at the backdrop of golden aspen leaves dancing in an azure sky, on a glorious fall day. I remember thinking this is as good as it gets.
Blindness ended such impetuous outings. In time, I found a guide who took the pair of us down a favorite river in his drift boat. It felt great to be on the water again, but I can’t pretend it was anything like before. Still, we enjoyed floating through a quiet world on a beautiful day, trying to wake fish who didn’t want to play. The tranquility was shattered when dementia struck and my wife’s mind melted down. She had to get out of the boat. Words could not calm her and the guide rowed us to shore.
We haven’t been fishing since.
Then there’s sex. We’ve been wonderful, passionate lovers, always open, always eager to please each other. With us, it just happens, a kiss, a touch, a fond embrace and love unfolds. But, recently, I noticed that, in spite of these triggers, nothing else was happening. The woman who once loved to play sexually was now a child who just wanted to be cared for. Dementia had stolen another part of the woman I love and the life we shared together.
My blindness has put such losses in perspective. I’d never expected to lose my sight and the experience was devastating. But I survived and, with the help of friends, learned to explore and appreciate all those things in life that can’t be seen. I also learned that things we treasure can disappear in an instant.
Do I miss sex? Heck yes, and I also miss my wife’s killer guacamole. But these things are not coming back so I need to be grateful for what we do have. She still loves to kiss and hug and she’s very good at it. She still makes my day on our walks when she rushes up to coo and smile at every baby we meet. She still holds my hand as we sit on our favorite bench on the beach and share the feelings of living in a beautiful world.
And fishing? Another tough goodbye, but the fly fishing rod that sat on a shelf by the door for three years waiting in vain to be taken away on another impetuous adventure is now in the hands of my new son-in-law who has a a matching passion. I expect some marvelous stories will be coming my way soon.
In case you’re a Joni Mitchell fan, here’s a link to “Big Yellow Taxi.”
