The Night The Cat Exploded

 

(photo: 29th September, 2020 - proof that Piper is alive and well, albeit exhausted after an afternoon spent lying in a sunbeam, watching ducks & birds & chipmunks!)

I wasn’t sure what had woken me, but I was groggily awake, for about the sixth time that night. My husband was asleep beside me in bed, but there were a lot of lights on downstairs, which was odd.

Maybe I’d left them on - the last email I’d read the previous evening had stung. Someone who had known my husband long before I’d met him, but hadn’t seen him for almost two years, had written, “You were complaining so much I thought he was really sick. It’s good to know he’s fine.”  He was not “fine” and I didn’t think I’d been complaining, least of all to that person. A recent phone chat between them had lasted all of three minutes, with my husband doing all of the listening, none of the talking. 

But, as is so often the case, the negative voice drowned out all others. Was I overreacting? Imagining? Was he healthier than I thought? Was I complaining a lot? Was my concern making things worse? What if- What if-

I didn’t notice the smell until I got downstairs. In the corner of the brightly lit kitchen was a mound of  . . . My first thought was that the cat had exploded.  

It only took seconds to realise the cat was fine, and meowing loudly as if to tell me something had to be done.  

Something did have to be done. My husband had found the light switches, but he’d not only missed the toilet, he’d missed the washroom. Both of them. The one right beside our bedroom, and the one downstairs.

Fully awake, I looked back. He’d walked through the mess he’d left, tracking it across the kitchen floor, and up the carpeted stairs. There were handprints on the walls, and bannister, and . . . how could there be such a big pile on the floor, when so much had been spread round the house? 

I considered taking a photograph of the excrement to text to the person who was convinced that I was exaggerating our struggles. Instead I cleaned the kitchen floor, and the hallway, and tackled the stairs, and then woke my husband to clean and change him. I put fresh sheets on the bed, I bleached the walls and counters in the kitchen, and I started a load of laundry. My husband and the cat curled up and both went back to sleep. I had another go at scrubbing the carpet on the stairs. By then the sun was rising, so I made myself a coffee.  

What if he’d gone outside instead of coming back upstairs? What if I’d slept through? What if- What if-

I scrolled through an online support group, not even sure if I had a question to ask.  ‘I’m writing an article about caregiving,’ one member had posted. ‘Title ideas, please?’ You Will Need Patience, someone had offered. Yes, I thought, thumbs up. There Will Be Imaginary Friends, another person wrote. Yup, I thought, also thumbs up. There Will Be Sh*t, suggested a third person. I gave that one a heart, then Skyped a friend in England because it was already mid-morning there.

‘Hey,’ she said. ‘Good news?’

‘Good news. The cat has not exploded,’ I answered, and told her about the previous hour of my life.  

‘Oh crap,’ she said. ‘Whoops, no pun intended.’

‘Huh. Maybe I’ll laugh about this one day.’

‘Laugh about it now, Lou,’ she suggested. ‘I'm laughing! Laugh with me. And know that every text I send you this week is going to include a poop emoji.’  

I didn’t manage to laugh about all the accidents and all the laundry, every time. But I had a lock installed on the front door, so that if I ever slept through his waking again, I knew he wouldn’t be in danger of leaving the house. And I do know there are far worse things in life than cleaning up a mess. And I am thankful, weird as it is, the original poop emoji with steam and flies has been replaced with a much cuter version. 

 💩 💩 💩

Love/ verb/ to Hold Dear, to Admire, to Greatly Cherish

 

First thing this morning Laurie and I swam out to the little island and back, then sat in the sun with a pot of tea, and wild blueberry muffins, and poetry.

Just part of my day, but important to me for many reasons.  

It was dark when I rose; it would have been easy to stay warm in bed instead of making muffins. But baking is one of the ways I (try to) show love, and today, especially, I wanted to remind myself (and the universe) that “love” is a verb as well as a noun. 

I have always been extraordinarily lucky. I am shy but have managed to surround myself with the most extraordinarily wonderful friends for my entire life. My four best friends childhood friends are still my four best friends (and our childhood was many years ago!) - but that’s a story for another day. This friend, Laurie, is a new friend, and to make a friend in middle-age is such a great joy.

We first met at the University of Ottawa at the Alice Munro Symposium held in 2014. I mentioned my connection to her northeastern Ontario city, but it took all my bravery to network with her as an academic. A few years later, I moved back to Canada, to that same city, and our paths crossed at a monthly evening poetry reading series. She contacted me to ask if I’d be interested in a volunteer position with the series, but by that time my husband had started sundowning, and I wasn’t able to accept her offer. We began a semi-regular email correspondence. She put my name forward for a job at the university, where she is a professor.

Then, suddenly and unexpectedly, her husband died.  

When she invited me to lunch some months later, she said she wanted her world to expand, not contract. We had lunch, several times. We walked her dog, often. We talked about books we’d read. We started attending a course about living with grief. And then Covid arrived, and all our travel plans changed, and somehow, magically, we created a new-to-us morning routine. Some days I go to her end of town, and we walk her dog through the woods, frequently seeing deer en route. We’ve watched the summer come and go through wildflowers. Other days she comes to my end of town and the three of us swim to the little island, then sit on my deck with tea and muffins (well, her dog isn’t offered tea or food). In the woods, the lake, and on my deck, it has been easy to stay six feet apart, keeping each other, and each other’s loved ones, and ourselves, and complete strangers, safe.  

Today marked the first anniversary of her husband’s death. Laurie chose to start the day with “our” swim, which is the only reason I endured the cold water. After we swam I read one of her poems, and one of her husband’s poems. We watched the light on the water, and a small group of mergansers feeding in the shallows, and listened to a pair of seagulls calling to each other off in the distance. 

grace by Laurie Kruk McCulloch

Epilogue by Ian McCulloch

A Love Letter to The Breakfast Club

Through our local Alzheimer’s Society, my husband and I met a wonderful group of people.  Since 2017 we’ve been having breakfast together every Friday (shout out to the amazing servers at Burger World), but we also meet each other in twos and threes throughout the week for coffee, walks, meals, and always, always support.  If we need a favour, a shoulder, a hug, someone to laugh with or someone to cry with - we are all caregivers, and we give care to each member of our group.

Our relationships far transcend the Dementia that brought us together.  These are the people on whose doorstep I can arrive with no notice. These are the texts I’ll reply to as soon as I see them, and the phone calls I’ll answer even if I’m in tears and letting other calls go straight to message.  These are my emergency contacts, this is my Covid Bubble. I never actually rang anyone at 4:00 am when I needed to shower my husband and change the sheets for the second time that night . . . but I know I could have picked up the phone and someone would have arrived.

We have taken several courses together and participated in group activities; we share resources and we try to offer practical help when we can. Sometimes help is the seemingly smallest thing: someone passing me a cup of tea. The act of love, the cup of tea itself, the silent acknowledgement that brewing tea was a skill Dementia stole from my husband.  

We celebrate birthdays and we mark anniversaries. We take turns being bossy, angry, dejected, exhausted. We send each other silly memes and serious articles. We help carry the memories our loved ones no longer hold. One of us crochets and cooks the best pizza, another makes cards and the most beautiful quilts, another sorts out technical challenges and makes us laugh. I take photos for a scrapbook, preserving our shared history, moments to remind us who we were, and who we are.  

Mostly, we listen. We understand. We empathise.  

I can’t imagine how much more difficult this journey would have been without my Breakfast Club.  If I could wave a magic wand, I’d gift everyone such a special group of friends. 

Notes About Survival

 

                                              (photo: September 12, 2004)

At a reading, I often introduce my hurricane poems by talking about how we sometimes anticipate or plan, the ‘afters’ in our lives: getting married, having a baby, starting a new job, moving from one country to another . . . But sometimes those life-changing moments come without warning and no time to prepare: death of a child or a parent, loss of a job, an act of terrorism . . .  I was living on a Caribbean island, my home of 7 years, when it was struck by Ivan, a category 5 hurricane - and my life was instantly divided into an unexpected, un-planned for ‘before & after.’ At the height of the hurricane I made peace with death, because there was clearly no chance I’d survive. (Spoiler alert: I was wrong!)

(My collection of poems is not (yet) published, but you can read early versions of three of them here)

I have been thinking about Ivan’s aftermath and my struggle to navigate through my forever-changed world recently; it’s the best lived experience I have that I can compare to the challenges of Covid. A new normal, a single topic of conversation for weeks on end, a naive belief, in the beginning, that it was a great leveller and had affected all people in the same way. (Alas no - of course the super wealthy and the impoverished, the whites and the Blacks, the locals and the ex-pats, the privileged and the marginalised, all had very different experiences, before, during, and after.) The hurricane and the pandemic share (for me) the fear that comes with uncertainty, but also share the calm that comes with hope. By April I realised that ‘after’ Covid, life would never again be the same, but I believed it would improve. 

With Dementia there is much uncertainty (how long? what next? how will we manage? how will I manage?) but at times it’s difficult to find the hope.  (There will be no recovery or improvement from this illness; I can’t teach my husband to read again, nor can I take him back to his childhood home, or take him to visit his (late) parents.)  

I survived the hurricane, and I remind myself of that when I need hope.  My friends and family are also vital to my survival - but that’s another post. 

Downhill . . . in Stages

Many years ago - so far in the past that digital cameras didn’t exist - I hiked in Nepal. I had to balance the worth of each potential snapshot with the weight of the film, the cost of having it processed, the weight of the prints. (When carrying everything on your back, every ounce counts.) Sometimes I think this was lucky for me -  I have so few pictures I’m free to remember the trip as I like, with little evidence to confirm or dispute my recollections. I took only a single picture of a terraced farm in the Himalaya, and I’ve probably not looked at it in 25 years, but here it is. 

(photo: 1991)

If you have met one person living with Dementia . . . you have met one person living with Dementia. Every person is unique; the disease affects every person differently but I like the simplicity of the plateau-as-metaphor for the progression of Dementia, as imperfect a metaphor as it is. This is a stage. This too shall pass. When my husband was aggressive, I told myself this was only a stage, and it would pass. We were both extremely lucky - it did pass. When he suffered from horrifying delusions and hallucinations, I told myself this was only a stage, and it would pass. Again we were lucky, with medication and the passage of time, the worst of it is over. And as the Dementia advanced I reminded myself that the resulting happy moments would pass too, so I had to put aside anything else I was doing to enjoy them. Those moments.  These moments.  Right now. Knowing that everything is fleeting helps me focus on what’s truly important.  

Of course there are stages which don’t pass.  It is a one-way, downhill path; this is not a disease from which he will recover. He lost his nouns, and they never came back. His ability to read, once gone, was gone forever. One morning he couldn’t remember how to turn on the shower.  Later, he no longer recognised the bathroom. Later still, every time we returned home from an activity, our house was new to him. My heart has broken a thousand times.  

But the plateaus are a blessing too. Room to breathe, to pause. Knowing that I have time to adapt to a new behaviour before the next phase of that new behaviour. First I cooked meals which I could cut into small pieces on his plate. Then I served everything in a bowl, with a spoon. He moved on to finger foods he could feed himself, and now he’ll open his mouth and accept a bite of food as a child might. There was a similar progression using/ forgetting how to use the toilet, so by the time he needed full on help, I was ready. (As ready as one can ever be, I suppose.)  

When I was younger it was so easy for me to think “live each day as if it’s your last” - so difficult to do.  Now I’m an expert at deciding what really matters to me, right now, and what can wait. Is my husband safe? Is he loved? Is he well fed, clean, dressed, cared for? I am so grateful that I can answer ‘yes’ to each of those questions. Everything else is an absolute bonus, and if I look, I can find many moments of joy.  He laughs along with a old TV show’s laugh track.  He eats a date square my Mum baked for him, and appears to truly enjoy it. We listen to a Pete Seeger song and he whistles along. Hold on to this moment, I remind myself.  And I do. (Sometimes my inside voice rages: this is not enough!  But it’s all we’ve got. If I choose to rant, I’ll miss what little joy there is.) 

Perhaps Covid has helped many of us sort out the more important from the less important in our lives. My wish for you is that your today is filled with moments of joy - moments you can see, and appreciate, and hang on to.

 

Silver Linings

 

(photo: September 2017)

September 1st, 2020

The light this morning is golden, and gorgeous. I think if I were a photographer, and it were the other end of the day, I might call it the magic hour. The sunshine seems more intense and the trees a more vivid green against the pre-storm sky. There will be rain, and then, perhaps, a rainbow. This is what I notice as I drive from my home to visit my husband, 135 km away. The light, the forest, the possibility of a rainbow. 

For everyone, summer 2020 is unlike any other; Covid-19 has changed everything. This was always going to be an unusual summer for me: late last autumn my husband, who is living with early onset dementia, moved into a long term care home. I was able to visit him almost daily until March. Covid closed his care home, and I wasn’t able to see him in person again until late May, when he was moved to a specialist unit in a hospital in the next door city. (But this is Canada, “next door” is a two hour drive.) 

I am a scrapbooker; every visit I take a different scrapbook to look at with my husband. Usually he loves seeing pictures of “his Dad” (really, of course, photos of himself). Sometimes he points to a picture of me and says something lovely: “she’s a smart one,” or “I like her.” Not today. Today he has no interest in the scrapbook; when he does speak, his words make no sense. There is no sign that he recognises me at all, even as a kind person, someone he can trust. (He has not known me as Louise, or his wife, for some time.) He sleeps for most of the morning, leaving me alone with our memories. I can usually find a sliver lining, and I will, but right now I feel broken.  I don’t know how much more sadness my heart can take. I blink away tears, move 2 meters away and sneak off my mask to blow my nose, pull back my shoulders, and sit beside him again, taking his hand in mine. He is safe, and we are together, and when he wakes up we’ll stroll through the halls, hand-in-hand. He’s not stuck in a hospital room by himself, like so many other people who are unable to return to their care home.  His care home, and this unit are Covid-free, and have been since the outbreak.  

One of the staff members is baking cookies; it might be the scent of sugar and vanilla and chocolate chips that wakes my husband.  He can’t see me smiling at him, masked as I am, but I hope he realises I am happy.  “Hey,” I say his name.  “I love you.”