I have been blessed to have strong women in my life. This book especially is dedicated to my mother Freda and my daughter Erin who each in their own way have been my strength and my inspiration; in memory of my Aunt Lorna who encouraged my writing and my artistic pursuits; and to my sister Jennifer for even though we are two very different people, her tremendous loyalty to those she cares for and her unshakable belief is a source of admiration to me.
I am thankful for my son Ben who steadfastly holds to his truth and whose creativity and intelligence constantly amazes me; to my Jim who is my partner in life and one who truly understands that my creative spirit is me; to my friends and family unnamed but in my heart - you know who you are.
To those who are no longer here but still mean so very much to me, I miss you and am thankful for the time we spent together on this earth.
To everyone I say: Follow your heart. It isn't easy and there will be far more people who have dozens of reasons why you can't or shouldn't do something than support you. They will think they are right. They aren't. Only you know what your path in life is and where your heart lies. These people will never see what it is to be alone in quiet moments with your partner when you're sharing a part of your soul you've never told anyone before. They will never know the feeling you have when you step foot in a faraway place and say to yourself, "this is home!". They will never know the feeling of being trapped behind a desk filling in the blanks on spreadsheets when your muse is screaming for you to be clutching a guitar by the lapping waves of the ocean, singing a song you just wrote to seagulls. Unexplainable things that shouldn't have to be explained.
Follow your heart.
Compassion is something we are sorely missing in this world and it's something we sorely need. If there's any message I hope that people get from this book is that when you show compassion you are showing you believe in a person's humanity even if you may not believe in what that other person does. It means that people have a right to be who they are and you accept that. Life has a way of throwing challenges in our way that intitally may seem insurmountable. Compassion can make a bad situation at least liveable and sometimes makes all the difference. It's in the littlest of things that we sometimes get the most meaning.
Thank you for reading my book, and taking some of your precious time to share in my imaginary world.
Clang! Timber, with an expert paw sends the metal cat food bowl skating into the door.
Dammit. The dog’s playing hockey in the living room again. Must be time for a walk. As if on cue, Timber appears at my desk with the bowl in his mouth, in a doginisian “Please sir, may I have some more?”
Yes, it is time, but the owner of this begging beast is busy. He has a story in mind and he’s in mid-sentence. With only a small twinge of guilt I let the dog out to the fenced yard, bowl in mouth, to bark down the evils that are neighbourhood children coming home from school.
If anyone had asked me what my plans for the future were two years ago, being separated and living in my mother’s house in New Brunswick squeaking out a living as an overnight cleaner wouldn’t have been one of them. At 54 I should be happily going to the cottage with my grown children, possibly with grandchildren. I should be planning for retirement. Life has a funny way of throwing monkey wrenches into plans for happiness, and let’s face it, the monkey I was dealing with was a gorilla, not a capuchin.
Two years ago I was living in Mississauga working in a government job making close to ninety thousand a year. I had a wife and a townhouse. Two years ago my mother asked us to come to her house for Thanksgiving, she didn’t have enough money to travel but she did have money for a turkey and it’s been a year almost since she visited them for Christmas. Since this year would be Elise’s parents turn it would be an even longer time before she saw them.
It made perfect sense to go to Fredericton. We’d go a few days early, help her with the dinner, maybe see my Moncton cousin. It would be fun. I told my mom, yeah, I could use a week off and Elise has been working really hard so I didn’t see why they couldn’t spare her for a few days either side of the weekend. Mom was almost ecstatic; I heard the happy lift in her voice, and, feeling somewhat guilty for not seeing her nearly enough I told her I’d let her know what flight they’d be coming in on.
Ah but Elise. A veritable whirlwind of perfection, of course she had plans. There was a live turkey on order, facing its death penalty at some farm in Caledon. There would be wine. And her equally perfect friend Candice. Not Candy. Candice. Calling her Candy on occasion was a small pleasure not be discounted. The top of her ears turned a maple leaf red and she’d snap “Candice. Not Candy.” Makes me smile just at the thought of it.
Looking back I realize that these were two women trying desperately to live the Toronto dream, selling real estate in the outskirts, two middle aged middle class women selling mid-range housing to middle class families living on the edge of their budgets. Everybody lies, and these two they did it like pros. They yearned to be selling houses to moguls and movie stars but no. The closest they ever came to wealth were the well-heeled parents of fresh out of university kids making their way in the world. It made these women feel special to be in the rarified air of these people and I bit my tongue when I wanted to tell them: you’re the help. They treat you nicely because they want something of you. But you’re still the help.
So now the dog’s at the door wanting in. It’s not my dog, and it’s not my home but it might as well be. The original owner isn’t here, not really. I open the door to a charging train of Black Lab energy. Back to my story.
So Elise wasn’t having any of our going to Thanksgiving at my mother’s. She pointed a well-manicured finger at me and said, “And you’re not going either!”
Well. Faced with the imminent demise of a condemned turkey and the fall colours of New Brunswick, there was no choice. “Yes I am” was the answer and that was that.
When I arrived, my mom was excited. All in a tizzy she apologized for not renewing her license plates on time so couldn’t pick me up. Her usually tidy little house seemed unkempt with overflowing kitty litter boxes and a puppy on the couch. She didn’t like dogs.
Mail littered the tables. Half eaten food dishes piled on the counter. Dropping my bag in the hall, I told her to freshen up, we’re going for dinner. While she puttered about dishes were scraped and put in the dishwasher. Mail gathered and put on the table to look at later.
We went to a favorite place of hers, a little restaurant with a 1950s theme and fresh pies in the doorway. As we talked, the small talk moved into discussion about family and friends. I asked about all those bills lying around the house. Oh, your dad’ll take care of those when he gets back from Toronto, she told me.
My throat tightened. Dad has been dead for ten years. So I asked how long he’d been gone. A week or two, maybe three….
Oh, mom. I asked her how long it’d been since she’d been to the doctor. She took offense, then quietly admitted it had been a while ‘cause her doctor retired and now she’s on some list or something so she doesn’t go. I would look into this later, and as I discovered there are thousands on that doctor list, myself included now. We wait years, or so I’m told.
I was beside myself. Getting home mom said she was tired and headed off to bed. That was my opportunity to snoop and clean at the same time. Bills from months ago – it was a good thing she still had lights on. The car. I took the keys from the hook, started it up. At least it started anyway. He’d get her the plate stickers, that is if she still had a driver’s license. But should she drive? Maybe she unintentionally grounded herself.
I called my Moncton cousin, asked when they’d last seen mom. A while, they admitted. Gently, I told them about the situation and mom’s insistence dad was in Toronto. Alarmed, Mike decided we should go there for Thanksgiving dinner so he could see her for himself and so we could talk. His biggest concern was the difficulty in getting a space in a nursing home if she needed it. There just aren’t any, he said.
I poured myself a glass of scotch – hate the stuff but my dad loved scotch and my mom still had some tucked away in the china cabinet. My mind whirled. What do I do when I live two provinces away? None of us could afford nursing home fees even if there were spaces. Now what? Elise wouldn’t go for his mother living with them and they didn’t have the room anyway. Then there would be the nightmare of selling mom’s house and dealing with things. All these things. And this puppy and the cats. Mom wouldn’t let me get rid of the cats though I still wasn’t sure why she even had a dog. At this point, I was almost afraid of the answer. Regardless, it looked like my weekend home was going to be a might longer.
Work. With all the talk of layoffs and recommended retirement going around I mentally braced for the specter that I’d be first on the chopping block.
I thought back as I sipped on the scotch, dreading every swallow but at the same time, trying to understand. In my telephone conversations mom seemed okay. She was always cheerful, talking about her friends and her garden and what books she was reading. How could I not know there was something wrong?
I picked up the phone, started to dial home and clicked it off. There was no point talking to Elise right now, I mean, what could she say? I’d wait until after dinner at my cousin’s.
The puppy yapped at my feet. Damn, the dog. When was the last time it had been let out? I let it out the back then went to the kitchen to check his bowls. Empty. I put a scoop of dry food, topped up the water bowl. I didn’t even know what to call the thing – mom had literally said nothing about it. Was she watching this puppy for somebody? Yes, that had to be it.
I checked the cat bowls – they still had food and so I just topped up the water, scooped the kitty litter again for good measure.
I wanted to call somebody but I’d already called all the somebodies I should at this point. I wished I’d brought my laptop with me but then I doubted she had internet. The smartphone would have to do, but endless pictures of kittens with thought bubbles over their heads and links to weird news articles just wasn’t something I wanted to do. I thought about reading the news then thought better of it. My mind was a whirl and the scotch wasn’t helping.
So with that, I bade goodnight to the puppy and the cats, picked up my bag and brought it into my old room. The bed was nicely made, probably from my last visit but at this point I wasn’t going to worry about how long ago the sheets were washed. Mom had left my door closed so the cats couldn’t get in and it did look like she’d dusted fairly recently. My silly old lava lamp bubbling as it had many years ago (and the fleeting thought that maybe it was some sort of a fire hazard after all this time) and my room was, well, 1979.
It’s funny how you can be in a place that takes you back and for a few moments you are that teenager. I half expected my girlfriend Sandy to call me to see if I’d be going to McDonald’s or was I still working on that project. In the living room my dad is there, smoking his cigarettes and watching television, my mom is knitting socks and thinking about the Thanksgiving dinner she’s going to cook.
Life seemed so complicated back then. High school dramas and who’s dating who, but at this moment I swore I’d give my left nut to go back to those days. I wanted to think I was proud of my achievements but I really wasn’t. It was easy to see how sucked in I’d gotten to the Toronto lifestyle looking around this simple room from a simpler time.
Back then I had all the usual dreams of a wife and kids and house. And back then, like most of my contemporaries I chose to head west, always with the glimmer that I’d make my fortune where the money was and come back with experience so I could find something here. It wasn’t out of the realm of possibility that I could work for the government and then find my way back home because there were jobs out this way. Just not that many of them, as I found out, and not that many open to people from across the country. I tried working my way up to a level where I might just be able to but by then I was married to a died-in-the-wool Torontonian.
That we never had children was my saddest point in all of this. Sure, it meant that we had more money for a nicer place but really, given the preference of a less paying job and kids with a much less expensive house in the Maritimes that’s what would have been a better choice. Having a wife that was a little less about nice furniture and good cars and expensive clothes would have helped too, but I was smitten when I met her. She seemed all glamour to me, and yeah, I should have asked whether children were part of her plans but really, when you marry somebody and you’re in your twenties, isn’t that something that’s a given? Turns out it wasn’t and no amount of hoping and cajoling was going to fix it.
All of that thinking was making me sad so I unpacked my things, got into my pajamas, brushed my teeth and washed up. That night when I went to sleep, I really did feel seventeen again, surrounded by the sounds and smells of home.
I think maybe I’ve given up on my writing for today. The dog is being just too wild and maybe I should consider a hoof around the block with him but with mom snoring loudly in the bedroom, drugged up to the eyeballs I wouldn’t want to go out and find she’s gotten up and then started wandering in the house and fallen down the basement stairs or something.
Timber looks at me with a cocked head and sad eyes. I swear to God this dog knows my thoughts, he’s just not letting on. Dog, I promise to him, we are going for a walk. Honestly. Maybe when the personal assistant comes.
For the life of me, I think the dog smiled.
Last night I found my old guitar, on top of several boxes in the basement. I dusted it off and brought it upstairs and told myself that when my muse takes a break, perhaps the guitar (if it still works) will open the floodgate to words.
Looking it over, it seems okay. The strings will probably break when I try to tune it but hey, if I can play a few chords I’ll be happy.
The tuning is the hardest thing. You don’t lose your ear if you have that (and I do) but the subtle knowing of exactly where and how much to turn the key changes with every instrument. In this case, the strings are so unwound they may well be absolutely unless.
As I suspected, getting the strings to hold tension even just a bit is a challenge, but I got something that sounded like a C chord so it was time to play. But what? It’s been so long.
I started out with something my mother loved to hear me play – which on thinking of it, it is a bit of weird song if you use the words. I played – or shall I say tried to play – Jesus is calling (Come Home). Now the words that always creeped me out involved deathbeds or something like that. I’d have to find my old book of songs that I’d cobbled together from various photocopies and hand written things. It was there. Sadly all I could do was a lot of duh dah dum duh dah dah Jesus is calling, calling for you and for me, la la la la etcetera.
Next thing I tried was Leonard Cohen’s Suzanne, one of my favorites. No dice, just got to the end of the first verse and my fingers were all over the place clumsily groping for the right thing. I know these songs. I do. I used to play them all the time. Damn. I felt absolutely useless by the time the strings had unwound enough that it didn’t even remotely sound like the notes I was trying to play. I leaned the guitar against the arm of sofa, frustrated and angry at myself, mentally grasping for words and fingering that not so long ago came without thought.
Timber, curled up in my dad’s old recliner eyed me with a cautious look. A part of me felt sick, it dawned on me that was how it must have been for mom at first. Knowing things, trying to pluck words and actions from a memory that was starting to misfile the whole lot. And words, oh man, I thought about how it was when I was in French class; knowing what to say but totally at a loss for the words to frame those thoughts. Is that what dementia does to you?
I blinked away tears. Cursed the health care worker who was supposed to be here in an hour, because I want her here now. Nothing means more to me at this moment than to clip that blue leash on that bouncing black dog and get dragged around the block by my born-to-pull-a-wagon dog.
My dog. He is. Mom said the day after I arrived that Thanksgiving weekend that she and a friend liked to go to the shelter and visit with the animals. She’d go cuddle with the cats, Shirley would go walk a dog or two. Shirley’s old black and tan had died of old age a couple of months ago and at seventy she didn’t think getting a new dog was such a good idea though she missed them terribly. My mom on the other hand would have filled the house from basement to attic with cats if she could. Thankfully though, she cared enough not to get more cats than she could feed and take to the vet when needed. So when I arrived the elderly white one and the middle aged black one were all the cats she had.
Shirley though, she fell in love with this tiny black lab. One of a litter of eight dropped on the shelter doorsteps, way too young to be away from their mom but there they were. Shirley took to going every day to help with the bottle feeding and volunteered to be foster mom for one that she had really taken a shine to. It all went so well she told them she’d keep him. Puppy and new owner did well until Shirley fell ill and wound up in the hospital.
So that was why this nameless dog was sleeping on the chesterfield when I first arrived. Shirley never did leave the hospital; after her mild heart attack (if such a thing could ever really be mild) she suffered a stroke. Last he heard she was in a hospital for extended care. So little puppy has extended care too – but in one sense it’s better that I have him than an older person, he turned into a lot of dog once he grew into those adorable clodhopper paws.
For the last two years I’ve been trying to find myself, hoping to come to some sort of understanding of the crashing disappointment my life had become. My old bedroom brought back to mind most of the dreams I had and how very few of them were ever actually realized. The crushing sense of wasted time, wasted opportunity and wonder over how his life would have turned out had he made different decisions overwhelmed me at first. Still is, to be honest. You see a part of me inside is still that twenty-something-year old with oodles of time and lots of forks in the road to travel down.
My mom yelled out something in her sleep. When she does that it makes me wonder if she’s whole and fully cognizant, living a life she no longer can in her waking life.
She sleeps more than she’s awake now. There’s times when like a mother with her new born child I watch her, waiting to see a rising chest or a simple movement so I know that she’s still with us. Nobody knows how long she has left, but her doctor surmised that she was really in palliative care at this point since her moments of lucidity were quite rare, her speech almost gone, her movements those of a child.
A car pulls into the driveway. Finally! A few hours of me and Timber time. Walking the dog, reading, watching t.v. or trolling the internet is pretty much all I have to do right now since work is out of the question without someone to be here for mom. Kind of a strange catch-22; if I had money to hire someone I could work, but I don’t, so I can’t go make money to go hire someone. That I was able to get a worker to come in for a couple of hours three times a week is a blessing, and one for which I am grateful, still it’s not enough. How would my dad have been able to cope with this were he still alive and the one dealing with this? He’d be over 80 now. The answer is: he couldn’t.
The doorbell rings. My happy helper smiled her way in and said a cheerful hello. I could see quickly glancing around subtly then she asked how my mom is. I told her the same, she’s sleeping, was changed four hours ago. Good stuff, my angel Tammy said and waved me to the door saying, go, get some fresh air you too. She clapped her hands twice and Timber became the shark circling around, excitedly hoping for that walk I promised.
The chill autumn air hit my face with a damp slap. Timber bounded happily ahead of me, tongue out tasting the scents around us. The trees that last week full in full blaze of colour are half naked, their vestments fallen to the ground in a sad memory of summer gone. A fat squirrel with cheeks stuffed with acorns taunted the dog, flashing its puffy grey tail before dashing up a tree. If we walk far enough we are at the edge of the woods and in there if you’re lucky you see deer. I love watching the deer tiptoe past my windows in the evening but it’s not so entertaining when Timber catches a glimpse of one. He will try to chase after it in full bark, nearly yanking my arm out of its socket in the process. He is a strong dog. He was built for working. I feel bad about that. He’s not nearly getting enough exercise as he should but when my outings into the world are limited, the fence backyard is the best we can do.
I walk for as long as my uncapped head and ungloved hands can stand, and unfortunately for the dog he really wasn’t ready to go back inside but the promise of a slice of bread was enough. He galloped happily back inside when the word bread was mentioned. Bread is definitely one of his 400 word vocabulary. At least that’s what they say about dogs, I suspect he knows more but he’s not letting on.
Tammy is chatting happily to my mother, no doubt while she performs her various checks and personal cleaning things so Timber and I stay in the kitchen, a fresh pot of coffee dripping into the carafe while I toast some bread for myself. In a small corner of my brain I hold the thought: this should have been Elise and I here. A good partner would be helping me, not squatting in our shared house thinking of renting out rooms for strangers and keeping me on the hook for half the mortgage.
I push the thought away. I am skating dangerously on the edge of depression and that simply can’t be. When you’re the caregiver, there is no one to care for you. Not when it’s just a family of two. I can honestly say that I never really gave much thought to what it would be like to be a single mother before but now, between looking after mom, taking her to appointments, cleaning, shopping and everything else I can’t even begin to figure out how a mom with small children and a job could do this day in and day out for years on end and still stay sane. So for my twinges of sadness I feel selfish and dumb; I will not think self-pitying thoughts again will be my new mantra. That, and come on Lotto 6/49, if there’s anybody who needs you right now, it’s us.
“Up you go,” Tammy says from the bedroom, “there, that’s a girl, there we go June. Let’s go see Doug. Okay now?”
Some indistinct mumbling, a creaking of bedsprings, a shuffle of slippers across linoleum floors. Tammy is all smiles and she leads mom into the kitchen and gently seats her at the kitchen table. “Oh look,” she says brightly, “why there’s a fresh pot of coffee right now. Would you like some or do want some tea.”
Mom nods her head. Tammy says, “Use your words, dear, which is it? Tea? Coffee?”
Moms gives a giggle that sounded eerily like a little girl’s. It disturbs me to hear her giggle like that. I don’t know why, it just does.
“Well then, tea it is!” The clink of cups on the counter. The sound of water pouring into the kettle. The click of the on switch.
Time for my cup of coffee. “Hi Mom,” I say and pat her on the shoulder. “Did you have a good nap?” I ask as I pour my coffee.
Mom is chewing a cookie from a plate that Tammy’s put in front of her. She pats the chair seat beside her. “Dougie, sit.” I do. Her eyes are as bright as they’ve always been. Deep brown, they make me think of the fur coat her dad had gotten her when he was quite young. Mink it was, maybe. But same shade of brown, same soft depth. She beams a big smile at me.
I smile back. Tammy joins us at the table, placing the tea in its mug in front of my mom. I know she puts a bit of cool water in it now so mom won’t burn herself by accident, but just for effect she blows on it and warns mom, “hot.” Mom nods, picks up the cup.
Tammy asks me about my walk. I tell her it’s chilly but refreshing and the dog loved rushing into the leaves. Mom dunks her cookie into her tea. All of my life I’ve watched her do that, and all of my life I’ve not been able to figure out how she could possibly like a soggy cookie.
I ask Tammy how things are with her. She has clinicals coming up, it’s going to be in the neurology unit at the hospital. “People like me,” mom says, “and uh sh-Shirley.”
Tammy and I both grin broadly with that one. First sentence we’ve heard in a few weeks.
“Why yes!” Tammy exclaims, “I’ll say hi to her if I see her. Shall I say you say hi to her for you too?”
Mom nods her head yes.
For these few moments, life seems almost normal. Tammy is chatting about the weather, and politics and stuff in the news. Mom smiles and seems enthralled by it all. I sip my coffee in silence.
There has to be something more. Has to be. Once upon a time in Mississauga, I would go for a walk at lunch from my office building in North York. There’s a cemetery there, and a special meditation garden. There were many days I walked through that cemetery and sat in the garden appreciating the peace. And walking back towards my office, the thought crossed my mind that it would be so nice to just keep walking and stop when I couldn’t put one more foot in front of the other. That was in the Elise days, the days when I welcomed any chance to travel just to not be home.
There are things I miss about working. Like people. And conversation with more depth than the weather and bowel movements. Also seeing more than these four walls that surround us, and the street and the grocery stores. Oh, and the pharmacy which is my second home it seems these days.
I don’t want to seem selfish or ungrateful. I don’t. I love my mother with all of my heart and with a sister out in BC who can’t help on a day-to-day level I’m all she has. Elise when I explained the situation here a couple of years ago told me to put her in a home. But it wasn’t as simple as that. Yes, here, like all cities in Canada has senior’s homes with round the clock nursing staff and there are spots, but only if you have the money. Many people do, and maybe if I fixed up and sold mom’s house and did an estate sale there would be the money for a year or two or perhaps a bit longer but what if this dementia carried on for longer than that? More of a concern to me though was throwing her into a place surrounded by people she likely didn’t know, away from familiar things and then disappearing back to Ontario. What then? As good as my cousins are they have their own families and their own parents a few who had their own health challenges as well.
But still. My growing unease with not having any time to be me is starting to weigh on me, the walls are closing in millimeter by millimeter daily.
Tammy is suggesting we take mom for trip to the mall to walk around and be around people. I say I’m in the middle of something, can she do it alone? Certainly. I hand her a $20 bill and say that’s for a treat for the two of them. She gets mom into her outdoor things and carefully walks her to her car, opening the door for her and placing a gentle hand at the top of her head so she won’t bang it on top of the door opening as she sits down. While they are doing this I run out to my car, grab the handicapped card and place it in the driver’s window so Tammy won’t have to walk far with mom. She gives me a thumb’s up, finishes buckling mom in then herself and off they go. Tammy will be a good nurse, she has a great way with people.
I clean up the kitchen, gather up the laundry from our bedrooms and throw it into the hamper. With enough to make a full load I head down to the basement to the laundry room. I walk past boxes and boxes of stuff; stuff from my house, stuff of my sister’s from when she was little, stuff of my dad’s put away to look at later, stuff my childhood. I made a mental note that it was time to go through some of this, get rid of junk, sort out memorabilia and make piles of old clothes to wash and give away. That would be my next project I think, but then worried again about mom getting up and me not hearing her. A flash of inspiration – baby monitor. If I got an old baby monitor off kijiji or at a garage sale or something I could spend time down here and still listen in on mom when she’s sleeping.
It’s a little bit silly how happy that made me feel to have a project, but it did. I’d like to have an exercise spot down here with some used equipment, maybe a workshop area too so I could maybe build furniture or something. So there we go, I have plan. But first, the baby monitor.
By the time Tammy comes back I’ve got a meatloaf cooking in the oven and some water boiling on the stove for the vegetables I’m in the middle of cutting up. Tammy’s all achatter about the people they saw and the pretty dresses in the store windows and showed me the nice smelling talcum powder mom thought would be good to have. Tammy hands me change, saying they also got a snack while they were there. I tell her to keep the change but she says no, I should take it.
Tammy leads mom to her favorite living room chair and turns on the t.v. for her. She hands her the remote, which mom puts on the table beside her. She watches the screen but really how much she’s seeing is a whole other matter. Still, it’s something to occupy her for a while.
In the kitchen Tammy talks to me about mom’s condition and suggests maybe we should sign her up to a respite program so that I have some time to myself. At first I think, why do I need more time to myself? But Tammy also reminds me that there’s day programs with other people in them so mom would have the stimulation of having other people her own age around. Putting it that way, it did sound like a good idea.
Then Tammy asked me if I had considered joining a support group for caregivers of elderly people with dementia. I hadn’t thought of it really, to honest. When I think of support groups like that I think of husbands and wives not children, but in reality it makes sense that it would be more the children of, doesn’t it? I told her I’d look into that too.
Tammy said goodbye to mom and to me then off she went, back to her books and her university world. Me, I went back to my pots and pans.
It wasn’t long after that I hear a shriek and run into the living room to find our black cat, Joe sitting her lap, purring and needing one of her legs. I run over, pick up the cat and put him down on the sofa beside the dog. Mom is shaking and crying – clearly the animal scared her. I go over to her, pat her hands and tell her everything’s okay. But it’s not. I know it. She’ll be out of sorts all evening now and it made me sad because up until now this had been a pretty nice day for her.
To get her out of her mood, I turn off the t.v. and put on some of her favorite Frank Sinatra music. It isn’t long before she’s swaying to the music and humming happily. Phew. Crisis averted.
I had about half an hour before dinner would be ready so I went over to my laptop and began searching for support and respite groups in Fredericton. There’s several, I discovered. I bookmarked the search page then got the table set for dinner.
Mom doesn’t eat much anymore, and I have to be careful about chocking. Soft flavorful foods work best, so tonight’s meat loaf, mashed potatoes and cooked spinach will do well, she usually likes them all. I poured her a glass of water, dished out her portion, cutting up the meatloaf into small bites for her. I do hers first so there’s time for it to cool down while I get mine. Once mine is dished out I put the leftovers into containers on the counter, tops just resting on the containers so they can cool before I put them in the fridge. I always make enough for two meals, just in case we have a wild day and then I can just nuke dinner quickly in microwave. Days like that are getting more common lately.
I settle mom into her spot at the table and sit beside her, eating and watching her constantly in case she needs help. Some days she does; she’ll drop her fork or her hand will shake as she picks up her glass but today is going great. Her conversation is extremely limited, but it did cheer my heart when she said, “Dougie. Good food.”
When she was done I quickly put my dish in the microwave to hide while I help mom wash up. As I discovered early on, if I leave a plate with food on the table unattended there will in no time be at least one cat on the table picking at it, and if the cats push the plate too close to the edge there will also be dog help. Eating at the table shouldn’t be this complicated, but it is.
I help mom up and lead her towards the washroom. The first time I realized that she couldn’t manage without help it was so hard to get over the embarrassment, both for her and for me. I wondered, if it were reversed, knowing that she’d changed my diapers and dressed me when I was small would it make a difference now that I’m an adult? But things need to get done. Bums need to be wiped, and how is it that it’s often easier for a stranger to do this than family? That’s when it occurred to me it’s because they have practice. They aren’t being trepidacious, they just do what needs to be done and in that, the shame is lessened. So once I knew how to help – which is also the time I gave in the reality she needed a personal care assistant – that’s how I approached it. The PA walked us both through it. Mom still felt a little ashamed, she blushed, but was also grateful that this was just how it was now and that was that.
Now it’s just routine. She dresses in simple things – a dress is best but if she’s going out she wears pants with elastic waist bands that make it easy to pull down the pants, change the adult diapers, clean and put the new one on. As I said, dresses are easier but if she has an accident that the diaper doesn’t quite work out for, pants are better. Most of the time I don’t take her out because bathrooms themselves are an issue. For me to bring her to the mall for instance, there has to be a family bathroom and you’d be surprised (or maybe not) how many people use those just because they are there and empty.
If I were a dad with a small girl, I’m sure the situation would be the same in terms of where to bring her. People will always be suspicious when a man is with a female in the washroom and bringing them into the men’s room is just not on really, not unless you’re bringing a toddler. Of course I can’t go in the women’s room so yeah, it’s better Tammy takes her out in public.
Once we were done the after dinner ablutions I walked her back out to the living room. She likes to be around me and on days where she’s with it, she’ll even try to talk. The thing is, for all her difficulties in communication I know she’s still in there. I can see it in her eyes, so I try never to speak down to her. It’s hard to do when essentially she is a toddler in an adult body but knowing that all of her memories and experience are in there somewhere, I can’t treat her like a child.
So here we sit. Me at my computer, mom with her colouring book. She likes the children’s books where you take your pencils and fill in the blank spaces. She can do that for hours and to me, whatever makes her happy and isn’t going to hurt her works for me.
I start to search for respite and support groups but you know, I wasn’t sure that was the right thing for us. Maybe the respite because mom will be with people her own age and doing things that are different but for now I couldn’t face a group of strangers all agonizing about what was going on every day. If anything I would like a support group that deliberately doesn’t talk about dementia or poop consistency or which store has the sale on the adult diapers this week.
Okay, maybe I’m being cynical, and maybe, just maybe that’s the element of me feeling sorry for myself but a very big part of me wants to feel young – ‘cause really, 54 isn’t that old if you’re healthy – and I so want to talk to people in full sentences that involves something more interesting than bodily function schedules and doctor appointments. God. If I thought my world was a mess before this tops it.
I decide to check email and there’s a new one from Elise. Now what? She is determined to keep the house, but with me on extended leave and basically taking in no money and her real estate being a feast or famine affair she’s having a whole lot of trouble keeping up with mortgage payments, gas, electric, water, car insurance, house insurance, all that shit. I want her to sell. I have no intention of going back, I just don’t see it. She is still holding a bit of torch but I don’t know why except maybe because she hates to admit defeat. At the root of it I think is quite simply she thinks of me as one of her belongings. At least it always felt that way to me.
I don’t bother opening it. Not yet. That will be after a glass or two of wine, which is what I need to face this. Maybe I’ll just read for a bit. I’ve taken to reading the A Song of Fire and Ice series by George R. R. Martin. I’m on book two, Clash of Kings. Since mom made me her power of attorney, I pay all the bills. We get by. My only indulgence, aside from a sip of wine in the evening is internet and cable with HBO and a couple of movie packages so I can watch things like Game of Thrones and Vikings. They inspire me to write which has always been my passion. If there’s a bright side in all of this, it’s that I can take my soul and my emotions and pour them into an imaginary world of my own creation. That part of my predicament is the one thing I love.
Mom is gripping a red colouring pencil, rapidly scribbling, pressing so hard it’s nearly tearing the paper. I jump up, “Mom, what’s going on?”
Tears are pouring down her face. She looks up at me with those knowing eyes. “Dougie. Why?”
I hug her, never knowing if it’s the right thing to do, but this time it is. “Why what mom?”
“What mmm I uh did to be ah this?”
“Nothing mom. Absolutely nothing.” Now I’m crying. She reaches up, brings my head to her chest just like she used to do when I small. One hand cradling his ear, and a kiss on the top of his head. Softly at first she begins to hum that beautiful old Welsh song All Through The Night. As she hums I am sobbing – my mom had such a beautiful voice and to hear that humming it occurs to me that her music is something she hasn’t really lost. The notes are still there, the instrument is still there. If singing would make her as happy as my writing does for me, it’s something I should encourage. I will mention it to her, I can relearn my guitar or the piano and she can hum along. She doesn’t need words. Then again maybe it will help her remember a few words, you never know. The long term memory stuff is something that doesn’t really go away, it just gets lost in the translation from brain to mouth.
For now I just rest my head against her chest, the mixture of music and heartbeat the most wonderful thing I’ve experienced in a long long time.
In my next life, before I come back I will demand a beautiful singing voice.