‘Crying out for Care’ feedback

It has taken me awhile to gather my thoughts following the ‘Crying out for Care’ episode (http://www.cbc.ca/marketpla…/…/2017-2018/crying-out-for-care) aired on Marketplace. “What makes you an expert?” you may ask.

Here’s the reader’s digest version of MY story in point form.

• My Mother, at the age of 63, was diagnosed with early on-set Alzheimer’s disease in 1997. By the year 1999 I had to place her into long-term care in a Municipally funded home in a specific area for Dementia residents. At that time she could still walk, but no longer could speak (other than gibberish), nor could she make decisions, dress herself, shower or even remember to go to the bathroom. She exhibited many outbursts and behaviours at the time, which was handled with medications to sedate her.
• Throughout the 8 years in long-term care she declined rapidly mainly due to the age she developed Alzheimer’s disease – the younger a person develops the disease, the quicker the decline.
• She experienced 2 falls that required medical attention (one being a broken pelvis). Following the fracture she never walked again. I can only assume it was because her brain wouldn’t allow her to relearn the task at hand. Add in a wheelchair combined with her disease made her more vulnerable to neglect and resident on resident adverse behaviours; one being a resident entering her room to try to sexually assault her. A family member witnessed this and immediately ran to the nursing station. My mother was examined and it was determined that she had not been sexually assaulted (they had caught the other resident right before he tried anything). As a daughter I was outraged, disgusted, and told the home that I didn’t want my mother in the same wing as the other resident, otherwise I would call the police. Within an hour my Mother was transferred to another floor and placed in a respite room until a bed arose on that floor. Following a few weeks, she had her own room, and lived the remainder of her life on the second floor receiving outstanding care.
• Jump to the year 2005. I decided at the age of 41 to return to school full-time and study activation in gerontology at the downtown Toronto George Brown campus. I graduated in 2007 with honours. I found a full-time activation aide job almost immediately at a privately run home in Bolton (King Nursing Home). Eager and excited to be working with residents and staff where I could bring both my personal and schooling experience to was a dream come true. How was I to know, at that time, and years later throughout my career at different facilities, it would become a nightmare?

Your story on Marketplace was correct in the lack of staffing in the nursing department, but what you never touched on was the lack of staffing and sometimes education of staff in the recreation department.

• Recreational and Social Activities

(a) have a post-secondary diploma or degree in recreation and leisure studies, therapeutic recreation, kinesiology or other related field from a community college or university; or(b) are enrolled in a community college or university in a diploma or degree program in such a field.

* You will notice that the issues with the designated lead and staff qualifications is that individuals who have a social worker diploma or OTHER can also work in long-term care in the recreation department. It takes special education to deliver holistic programs to work with individuals who are elderly, suffer from different forms of dementia, and those who are cognitively alert yet physically challenged. In comparison, I ask that you refer to the LTC act for the personal support worker qualifications.

Every licensee of a long-term care home shall ensure that on and after the first anniversary of the coming into force of this section, every person hired by the licensee as a personal support worker or to provide personal support services, regardless of title, has successfully completed a personal support worker program that meets the requirements in subsection (2).
(2) The personal support worker program,
(a) must meet,
(i) the vocational standards established by the Ministry of Training, Colleges and Universities,
(ii) the standards established by the National Association of Career Colleges, or
(iii) the standards established by the Ontario Community Support Association; and
(b) must be a minimum of 600 hours in duration, counting both class time and practical experience time.

I have to question why is there a difference in qualifications/education for personal support workers versus the recreation/activation/life enrichment/programs department? I believe that many people are unaware of the on-going training needed to work in long-term care and with residents. Recreation staff makes up an integral part of the residents lives, but sadly is many times overlooked in the homes by the MOHLTC and management.

• PSW’s deliver ADL (activities of daily living for e.g.: getting resident up out of bed, dressing, bathing, bathroom duties, brief changes, feeding, etc.)
• Recreation takes over from there.

The Recreation department endeavours to run small, large and one-on-one programs tailored to the specific needs, abilities and challenges of each and all residents. Yet once again, as in the staffing for PSW’s, there is no ratio of recreation per resident set out in the LTC act.

• For example, when I was Program Manager at Eatonville Care Centre that housed 247 residents set out on four floors, I had one full-time recreation staff member per 60 residents. How can one person meet the different needs of 60+ people every day? How can recreation complete paperwork in a timely manner when they are being pulled in different directions on the floor? Recreation staff is constantly called upon by nursing when resident behaviours get out of hand. “Take Mary with you into the program, she keeps yelling out in the hallway”, “We need something for Harry to do, can you do something with him?” etc. etc. etc. With the reduction of prescription use of antipsychotics in long-term care (which should have occurred years ago), I have to say that I have witnessed more challenging behaviours exhibited by some residents ergo more trained recreation staff is needed. Recreation staff who have been specifically educated in recreation in gerontology are trained to diffuse unwanted behaviours such as: delusions, hallucinations, fear, anxiety, depression, anger, etc., but it takes time (diffusing unwanted behaviours doesn’t happen in two minutes).

One of the questions you asked in your expose was: Is long-term care in Ontario in crisis? No, we are beyond crisis, and we are failing each resident residing in a long-term care facility. Whether it’s a thirty-nine year old MS resident, a fifty-nine year old schizophrenic resident, a seventy-five year old massive stroke resident, a sixty-five year old Alzheimer resident, or an eighty-seven year old resident – should it matter? Hell YES, it matters! We as a society and province OWE it to each and everyone of them to properly care for their needs, and more importantly care for them as a ‘person’ with dignity and empathy, not as an inconvenience or annoyance…Our system grades an F for fail on all accounts; failing staff and more importantly failing residents, their families and loved ones. I only hope that with more conversation and education our system can be rebuilt as soon as possible, otherwise just ship me out on an iceberg when it’s my time.

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“I’m your boss… you do what I say…”

Let’s talk ‘harassment’. (Try not to grimace; I realize we are inundated with this word right now, but, rightfully so) The headlines are everywhere…

Broadway Gets Serious About Sexual Harassment – Variety

38 accuse writer-director James Toback of sexual harassment – CBC.ca

The (incomplete) list of powerful men accused of sexual harassment …

Women and a few men have publicly spoken out about their past sexual torment with mainly the male population who held powerful positions over them. My heart aches for the women and men who have endured silently and suffered for years; as the #metoo weighs on my mind and in my heart. The fact that some people (and I do not want to make it all about men) can invade and threaten a person’s physical and emotional space, is in one word, wrong. Although, it’s empowering to see individuals come together to eradicate this ‘wrong’, I worry about those working, for instance, at your friendly diner, in retail, and within small businesses, who cannot complain, cannot fight, and may never win a legal battle against their employer or manager because they need to provide for their families and/or themselves. A battle in the courtroom costs everyone (money, time, reputation, emotional and physical stress). At present we have all heard stories of those who have spoken out following years of abuse, who are now self-sufficient and are financially fit for life. ‘Good for them’ I say, but what about the rest of us?

What about the hostile work environment, you know, the one where sexual harassment doesn’t play a role? In other words ‘bullying’ by those in power over their staff or team.

The definition of bullying found online from the Miriam Webster dictionary reads:

– abuse and mistreatment of someone vulnerable by someone stronger, and more powerful. 

If you haven’t already figured it out, ‘bullying’ is just as prevalent, or more so, than sexual harassment in the workplace. I searched online to find statistics in relation to workplace bullying, and believe it or not, it wasn’t as easy as I thought, even using the World Wide Web. Is it because workplace bullying is tough to define? Is it because it’s tough to prove? Is it because very few people report it? Is it because we stay silent and suffer? I say ‘we’, because looking back, I’ve been there. I’ve suffered silently at the hands of the majority of my female managers over the years. In this day and age of ‘women supporting one another’, why is this still happening? Is it because women need to prove something to themselves and to others and/or men in particular? I can’t answer many of those questions, because I don’t understand it. I don’t understand belittling, I don’t understand psychological torture, I don’t understand the words “I’m your boss; you have to respect me”, yet you don’t respect me just because I work under you, and may have challenged you.

I remained silent for years. When I was younger I changed jobs when I no longer could take the verbal abuse from my female bosses, but as I grew older and wiser, I became more vocal and began to stand up for myself. “Woohoo”, you may say, “You go girl”. It didn’t help. Not as far as I could see. In fact, my situation at work worsened. At the moment my boss knew what buttons to push, she bulldozed over me, not only that, she pulled in another female manager to assist with her verbal abuse. This continued for months, until I couldn’t take it anymore. I found myself crying all the time. I found myself tired. I found myself sneaking past her office hoping she wouldn’t see me and confront me with some sort of issue. I found myself hating my workplace. I found myself writing my resignation letter. There’s a breaking point for everyone and this was mine. If I had been stronger at the time, I may have stayed and allowed my boss to fire me (at least that way I may have had a case or at least been able to collect some sort of compensation). Instead I left a position and job I loved, and one in which, I could never use as a reference on my resume. I did have an exit interview with one of the owners of the company and spilled everything. I’m sure if any of my words and accusations were followed up, it would have been a ‘she said/she said’ scenario. There was no one to back me up. I couldn’t ask others to help out. I cared too much for my peers and team to allow my ex-manager’s abuse to continue onto them. When it came down to it, which was more believable? The manager who had worked there for years dividing manager from team (by using intimidation tactics and power on those below her), or me (the newbie), the one who finally took a stand against her?

It’s sad that it can take one or two persons to create a toxic workplace, but on the flip side, it can take one or two persons to make a healthy and kind workplace. It’s a choice or a battle, one that will continue to be voiced.

Here’s my two cents worth; maybe if more people would speak out, maybe if more would listen, maybe if old-school workplace concepts evolved into new workplace objectives, then only, just maybe, the vulnerable would not suffer under the hands of the more powerful.

Baba

The weekend arrives and I concede to Baba’s wishes of visiting Mom at the nursing home. I hope that once she sees how bright and airy the facility is that she will not worry as much. In fact, I’m hoping Baba doesn’t blame me anymore for placing Mom. Baba’s idea of a nursing home is a dark and dingy institution filled with crazy people. She believes that it’s a place where one drops someone off, leaves him or her, and never returns. Not unlike, “Someone flew over the cuckoos nest”.

“Your Mom does not belong in there. Why can’t I move in with your Mother?” She begs over the phone.

“It’s a lovely home Baba. You’ll see. Mom has her own room and it’s decorated with her own photo’s and furniture.” I reply, ignoring her pleas.

I pick up Baba at 12:30 at her apartment. I estimate that this gives us enough time to arrive at Mom’s new home after lunch.

I notice she’s waiting outside the lobby in the pick-up area. My first thought is that she looks exhausted. Her usually thick grey hair seems to have thinned out greatly. She is wearing her brown and beige dress (that looks two sizes too large for her) with tan open toed shoes. “My bunions hurt, these are more comfy for me, I can’t wear closed shoes”, she continually tells me when I ask if she doesn’t have a more comfortable pair. She carries a cane in her right hand while keeps her purse cupped on her left arm. I rush out of my car to open the passenger door for her.

“Oh Paula, I can do it myself. You don’t have to help me in the car.” She says.

“I know Baba, I guess it’s just force of habit for me.” I smile; take her cane while I help her into the seat.

The drive is quiet. I can’t think of anything to say. I feel Baba’s heartache as she sits silently and blankly stares out the passenger side window. Neither one of us could have foreseen this future. All three generations (Baba, Mom and myself) are duelling with the demon called Alzheimer’s, but in different ways. Mom had always been Baba’s rock. Following Dad’s death seven years ago, Baba had suggested Mom and her live together, “two widows with many years left”, she’d remark; Mom kyboshed that idea immediately. I think Mom wanted to try living on her own. At the age of twenty-eight Mom went from her family to marrying and moving in with Dad. She never lived alone, or at least lived independently. I keep thinking that if Baba and her had lived together, maybe she wouldn’t be where she is today. I shake my head and think, “yeah right, like living with someone can stop Alzheimer’s”.

We arrive and I pull up to the entranceway. I help Baba out of the car and notice her looking around.

“This is not what I pictured.” She simply says.

I nod, get back into the car and park.

I quickly walk back to Baba. She is still holding her cane scooped on her right arm.

I take her cane and say,

“Baba, here, don’t forget to use this.”

We enter through the first set of automatic sliding doors. A binder sits on a small table set up before the main entrance. A sign taped to the glass says, “All visitors must sign in when entering and sign out when exiting.” I bend down, take the attached pen in hand and sign the book. Baba says nothing.

I punch in the four-digit code in order to open the sliding glass door into the atrium. I explain to Baba about security and how this is to make sure some of the residents don’t leave unattended. I used the word “unattended” because the word “escape” may confirm Baba’s fears of an asylum.

We enter into the bright and clean sunlit atrium. To the left are tables and chairs set-up for visiting, to the right is the reception desk. It’s quiet as I take Baba’s right arm in mine and walk her over towards the left side of the nursing station for Mom’s section.

A keypad rests above and to the right of the fire door. I punch in another code that I’ve memorized. I tell Baba that we have to be careful opening the door as there may be someone on the opposite side and we don’t want to hit them. I withhold the real reason; we don’t want anyone to bolt out the door, in other words, escape.

We walk through the doorway and notice a few residents walking around. A personal support worker recognizes me and tells me Mom is in the dining room. I’m torn as to what I should do; do I take Baba to Mom’s room and sit her down, then fetch Mom? Or do I take Baba directly to the dining room? I look down at Baba and notice she is out of breath. This is new for her. I wonder if it’s because she’s anxious or whether there is a serious health issue she is not telling anyone about. I’m not sure she will be able to walk down the long hallway to the end where Mom’s room is located. The head nurse appears around the corner. I smile and introduce her to Baba telling her she is Mom’s mother. The nurse senses my apprehension or notices Baba is in distress when she suggests Baba borrow a wheelchair.

“It will be easier for your grandmother. That way you all can visit and she can be comfortable.” She says as she runs into a room and fetches a common wheelchair.

Baba says nothing and doesn’t refuse the wheelchair. I’m hit with the realization that all my time and energy has gone into Mom, which in turn has meant I’ve ignored Baba’s needs over the last while. My eyes tear up, as my guilt boils over. Baba is not only my grandmother; she is my friend, my second Mother. How can I have been so selfish and wound up in Mom’s issues and mine to have not checked on her more often?

My thoughts are interrupted when Baba sits down in the wheelchair. I push her down the hallway towards Mom’s room. Baba looks straight ahead and says nothing until Mary (a resident) walks over to me and gently places her hand on my arm.

“And who do we have here?” Mary asks.

“Hi Mary. This is my Mom’s mother, Josephine.” I tell her. Why I don’t say, “she’s my grandmother” is beyond me.

Baba perks up. She smiles and puts out her hand to shake Mary’s. Is it the Scottish accent I wonder? Baba’s first husband was from Edinburgh, so I’m thinking the accent is familiar to her.

They chitchat and Baba brightens up. I look at both and ask,

“Can you wait here for a moment while I get Mom from the dining room?”

“Of course dear, I’ll keep Josephine occupied.” Mary laughs.

I turn and glance back at Mary (who is now sitting on her walker directly in front of Baba). It looks like they are getting along. They both smile and touch each other on the arms gently. What are they talking about, I wonder. I begin to relax and am relieved it’s Mary that Baba is speaking to (there are many other residents here who do not speak and are further along in their Alzheimer’s). I’m happy Baba has met one of the residents here and my hope is that she is more comfortable with Mom’s new home, or at least, less anxious.

I hate the night

Arriving at the condo, I take the elevator up to the fourth floor. Hunched over, I walk towards the door, put the key in, and open it. Once again, I expect Mom to greet me and a wave of sadness envelops me. My breath is uneven and my heart beats rapidly as I walk into the living room. I make my way over to the sofa and am cognizant of the fact I have to sell what’s left of Mom’s furniture, or throw it out. I have no more room at my place and Stephen has taken everything he can for his new apartment. I sit down on the sofa and rub my hand on the surface of the material. I smile when I think of how much Mom loved her furniture and reflect on the many memories attached to this piece. This was the special sofa placed in our living room over the years. Visiting family and friends sat comfortably on the couch telling stories, jokes and laughing way into the early morning. Alcoholic drinks and ashtrays with cigarette butts covered the coffee table. As a child in my pajama’s I’d sit mesmerized listening to each and every word. I’d always fall asleep on the floor in the living room, but find myself waking up in the morning in my own bed. I never knew how I got there; it was a complete mystery to me. Through the years the sofa has been recovered a couple of times because Mom never found another one, “as well made as this one,” she’d remark. The current colours and texture reflect Mom’s taste. A cream background surrounded by a floral print of pale pink, blue and purple. I wish I could take it, but it’s not really my style (too flowery for me), plus I know it would be ruined within months of living at my place. Mom had a knack of taking extra care of her possessions, which is a trait I did not inherit.

My head is cloudy and my mind is tangled like a bunch of necklaces in a jewellery box. I keep thinking, is there a way I can keep Mom’s condo? I answer out loud, “Damn, there is no way”. I stare in a daze at the floor and know that there is barely enough money in her savings account to pay for her monthly care as it is right now. I know if she were sixty-five years old and receiving old age pension things would be different, but she’s only sixty-four; two thousand two hundred dollars a month is a lot of money to pay at the facility, add in medications, hairdressing, and cable TV and we are in the red if we try to keep Mom’s place. On top of all that, I have no job and no income. Then I realize, whom am I kidding anyway? It’s not like she will ever come back here. A long-term care facility? That’s a joke. It really should be renamed, end-of-life facility. It’s not like any of the residents will ever leave the place, unless they go into a hospital to die. Her disease is terminal and I’m having such a hard time wrapping my head around that fact. Everything I read about the disease points to the fact that she’s never going to get better; in fact, she will continue to deteriorate mentally and physically over the next few years. Alzheimer’s will take over her entire being and I sense it will take over mine in the process. I remember a quote I read years ago that declared, “If we fear the unknown then we surely fear ourselves” (Bryant H. McGill). I think I may be frightened of how and if, I can handle this pilgrimage. In fact, I’m afraid of the present day and more so, the future. My phone rings and it’s the realtor. Time to get on with business. I have no choice. Mom’s condo will be sold and I’ll have one less thing to worry about. The money from the sale will be set-aside in her name for her care. I take one last look around her home and hope that whoever buys it, takes care of it and enjoys it. I’m beginning to realize that time is precious and to bask in the now as one never knows what’s around the corner or over the hill.

Later in the evening Mark and I cuddle on the couch watching TV. The security of having a person love me unconditionally comforts me. I allow myself to escape and fall into his arms and just be, if only for a short time. I wish I can stay here forever, but I’m brought back to reality when the phone rings. I jump up. The first thing that comes to mind is; please don’t let it be an issue with Mom, immediately the next thing that comes to mind is, Baba. I run both scenarios through my head, praying the call has nothing to do with either, as it continues to ring. I hesitantly answer. I look over at Mark as I listen to the stranger at the other end of the line. I apologize. I cry. I say, “Thank you so very much.” I tell the stranger Mom has early on-set Alzheimer’s and is now living in long-term care facility. More tears from the both of us at different ends of the phone line. We say our goodbyes and I gradually hang up the phone. Mark looks at me and asks,

“What was that all about?”

I run to grab tissues and ask him to give me a minute. I sit back down on the couch and begin to tell him the story.

“It seems like for the past few months Mom had been calling a complete stranger thinking she was calling me.” Tears fall down my cheeks.

“What? Baby, what do you mean; calling a stranger?” Mark asks.

It’s hard for me to repeat and process everything that I just heard on the opposite end of the phone line, but I try anyway,

“She told me that Mom called at least once a week. She talked to this lady or her daughter as if she were talking to me. The lady tried her best to convince Mom she had the wrong number, but it didn’t seem to register with Mom.”

Mark is silent. I’m sure I’m not making any sense, but I continue,

“Eventually, over time, her daughter and herself went along with Mom because Mom didn’t seem to understand the person on the other end of the phone wasn’t me. She added that Mom seemed sweet and kind. Neither she nor her daughter wanted to upset Mom.”

“But, I’m not getting this. How did she know how to reach you, then?” Mark asks.

“I guess some old fashion detective work. The last time Mom called, she dialed *69 in order to get the phone number. The next time Mom called she asked Mom’s name and Mom answered; Anne Macpherson. She then looked in the phone book for any other Macpherson and found me. She said she had no idea if I was related to Mom, but thought she’d give it a try.”

“But why did she wait so long to call you?” Mark asks.

I cry.

“I have no idea, I never asked.” I reply embarrassed. Why the hell didn’t I ask more questions? Why didn’t I get this lovely lady’s name?

Mark reaches out and we embrace. I cry on his shoulder. Through my sobs I say,

“She…she said she was worried she hadn’t heard from Mom in awhile.”

Oh my god. My heart is breaking for Mom. How could Mom not know that she wasn’t talking to me? Why didn’t I spend more time with her? Why?

Through all the crying, I question; what else was I unaware of? What if she called other people by mistake, thinking she was calling me? What kind of daughter am I, not to have known any of this? Once again, my feelings that I am the worst daughter in the world resurface. I need to escape and sleep.

I hate the night. When I was a child suffering from the flu, I remember Mom saying,

“The nights are always the worst, our temperatures go up, we become restless and unsettled. Sometimes there is no peaceful sleep in bed.”

During these ill times for me, Mom used to place an empty basket next to my bed to use if I felt sick to my stomach. Before long, she would settle in and curl up beside me in the twin size bed, holding a cold compress on my forehead while caressing my face. We’d snuggle together until I fell asleep. I felt safe and secure, and usually within a short amount of time, I’d be in a deep slumber.

There is no deep sleep for me now. I toss and turn. I can’t turn conversations off; I can’t stop the fears, and I have no answers to my many questions. I wish there was a switch I could turn off to tune out the voices, but there isn’t. I’ve tried drinking beer (many bottles) thinking it will help me pass out and sleep, but it never works. My brain does not stop. Somehow I think that my stomach may be attached to my brain because it never relaxes and it feels like a fisherman’s knot; tied up and rigid. Those few times when sleep does come (usually in the afternoon), I don’t want to wake up, because when I do wake, it means I’m thrown back into the reality of Mom’s disease, Baba’s aging, no job and everything else that is happening in my life at the moment. There are no dreams just nightmares. I hate the night.

Remember when…?

Now that Mom is moved into her room at the nursing home, Baba calls daily and says she wants to visit her. Even though the bond between mother and child is strong, I feel this is killing Baba. Part of me doesn’t want to take her to visit Mom, but the other part of me knows I can’t keep her away. I’m painfully and physically aware of her emotions, despite that fact she doesn’t show or express her disappointment in me. I know I’ve let her down. I feel I’ve let everyone down. Doing the best thing for Mom is not necessarily the same as doing the best for all those who love Mom, or me for that matter. At different times of the day I find myself tearing up, but know I have to pull myself together, because, I’m it. No one is going to help. No one can help.

I walk outside and stroll the block and a half to Mom’s condo to meet with a realtor. The sun on my face brings back memories of when I was a child. Out of the corner of my eye I see a father teaching his son how to ride a bike with training wheels. I smile and say hi. I surmise that the little tyke can’t be more than five years old, donning a blue bike helmet, jeans and matching jean jacket. I grin as I think he’s stylish for a young one. I wonder if he will remember this moment in time when he reaches adulthood. I want to run up to him, hold him by the shoulders, look directly in his eyes and plead,

“Promise me you’ll remember this day with your Dad forever.”

My thoughts turn to Mom again; she never touched a bicycle, not to mention learned how to ride one, nor did she see the necessity for one. Growing up in downtown Montreal, Mom never needed a bike. If she didn’t walk everywhere, she took the bus. Dad, on the other hand, rode like the wind in his youth. He’d tell stories about riding up north with his buddies then settling down to camp for the night. In my photo album there are pictures of Dad and his friends on their bikes smiling ear to ear. I wish I knew Dad when he was young. I wish he had told me his innermost dreams and secrets. I wish I had asked more questions. I wish he were still here.

 1970 – Montreal

It was a sunny spring day when Dad returned after a long day at work and called Mom and I out of the house in excitement to present me, at the age of six, with my very own bicycle. I could tell that Mom wasn’t impressed, by her pursed lips and shaking of her head. I, on the other hand was thrilled! This bike was my dream. Just a few weeks before, Dad had pointed it out in the window of a bike store. I remember how in awe I was of it and now it was mine. The bike was a Firestone warrior, oh how my eyes grew in size when I saw it (that’s what Dad would tell me years later). My new bike was magnificent; an ultramarine metallic two-wheel grown-up bicycle with matching rims on both the back and front, AND featured on the handlebars was; rainbow tassels!

“Is it mine?” I asked in disbelief.

“Yes, it’s yours. Do you like it?” Dad looked proudly in Mom’s direction.

Mom crinkled her brow and piped up,

“It looks a little big for her Ray. And, where may I ask, are the training wheels?

You know she’s never been on a bike before, how is she supposed to ride it?”

Mom and Dad looked at each other then immediately went inside and continued the conversation. I slowly crept up to the towering attraction. It was like a magnet, I was drawn to it. I couldn’t take my eyes off of it. I took my hand and gently rubbed the cold, yet electric chrome; my fingers walked along to the handlebars and tickled the prism tassels. This was the best present ever!

“Daddy… Are you coming outside…where are you?”

I was bursting at the seams. I needed to climb up on this beauty, sit on the black smooth seat and fly. I’d be the envy of the neighbourhood. Where is he, I thought? You can’t just bring this and leave. We need to get going, I need to get going.

“Daddddddyyyyy,” I wailed.

“I’ll be right there,” his voice drifted from inside the house.

Maybe, if I could just get up on this two-wheeler, I could ride it myself. Just as I was about to throw one leg over, Dad walked out.

“Wait for me, you don’t want to break it. I want to show you how everything works. You have to have respect and understanding for this bike.”

Respect it? What was he talking about? A bike is to be ridden and this one was made to fly!

Dad looked at me with his serious look, no smile, just straight to the point,

“We’ll start at the front. Here is your bell.” He gingerly touched it.

Bell? How could I have missed it? I was temporarily blinded as the sun bounced off the silver ball. When my eyes eventually adjusted to the light, I heard his voice continue,

“…these are your pedals where your feet go, when you push on the pedals the chain moves and the chains make your tires go, the faster you pedal the faster your bike goes….”

Blah, blah, blah, that’s all I heard. I was still mesmerized by my bell; I reached up and pulled the ringer. Ding-ding rang the bell. I giggled.

“Paula, are you listening? You can’t ride the bike without understanding how it works. Do you understand me?”

I nodded; I wondered why he was wasting my time with all this stuff about how to make the bike go… blah, blah, blah. My imagination flashed images of me propelling myself along on this brilliant machine, riding with the wind through my hair. I could hear everyone in the area saying,

“Oh look at her, isn’t she just unbelievable? Such a vision!”

Dad interrupted my thoughts,  “Are you ready to try it out?”

“Am I? Yes Daddy.” I exclaimed.

Immediately I looked up and saw Mom standing in the front doorway nervously wringing her hands together,

“Paula, please be careful and listen to your father.”

She was about to witness the debut of the unbelievable girl wonder, how lucky was she? There was nothing for her to worry about.

“Yep,” I answered.

Eagerly I put my one leg over the downward tube and found myself with both feet on the pavement. Hey, I was almost there as I held the handlebars in my tiny chubby hands. It took great restraint on my part not to ring the bell again.

“Now, to get up on the seat, put your left foot on the left pedal and I will hold the bike while you place your right foot on the right pedal,” Dad said straining to keep hold.

Whoa, this wasn’t as easy as I had thought. I swayed right then left, as Dad struggled to steady the bike. Within seconds, ta-da, I was balanced on the bike with feet on pedals, hands on handlebars and ready to go.

“We are going to do this slowly, push down on your right foot, then left and I will hold on and run beside you, understand?”

“Yeah,” I said nervously.

“Oh Raymond, don’t go too fast, she’s only little,” Mom piped up from the porch.

Dad looked at Mom and said, “It’s fine, she’ll be fine, don’t worry.”

As I pushed my right leg down, then my left, I realized I was riding, albeit with Dad holding on and running behind me, but still, I was riding! Faster and faster I peddled; I was feeling the spring breeze through my hair. I turned back to look at Dad and noticed he was no longer holding onto the bike. In fact, he was quite a distance behind me. Then it happened. I plunged onto the sidewalk and the bike toppled on top of me.

Just then I heard Mom’s voice off in the distance,

“Oh Ray, I told you not to go so fast, she’s fallen off.”

Squinting in the sunlight I noticed that Mom was about to leap off the porch stairs. I looked down the sidewalk at Dad and saw him put his hand up to stop her. He said sternly in her direction,

“Don’t worry, I’ll look after this. Stay where you are.”

It seemed like an eternity before he reached me in my precarious position. The bike was heavy and I didn’t move. I looked down at my knee. Was that blood? I heard Dad’s voice above me,

“Are you okay? Do you feel any pain?”

With my legs twisted in and around the bike like a pretzel, I wasn’t quite sure what the question meant. The entire scene flashed before my eyes; I wondered how did I get into this predicament. One minute I’m flying, the next I’m on the ground.

Dad’s voice repeated, “Paula, are you okay?”

It was right then that I felt a tremendous weight lift off me. Dad had picked up the bike and placed it against a tree. Bending down, he looked me straight in the eyes and with his back to Mom said softly,

“Paula? Are you okay?”

I started to blubber,

“I think so.” I stared at the blood gushing from my knee.

Dad smiled, lifted me up, looked me over and said, “You’re fine, what’s to cry about? The bike doesn’t even have a scratch, although, it looks like you have a small cut on your knee. Let’s get it cleaned up and try again. What do you say?”

I looked up at him with sad puppy dog eyes, and though I didn’t want to try this again, I wanted Dad to be proud of me, so I nodded … Dad grabbed my bike, took my hand and we walked down the sidewalk towards our home together.

Dad placed the bike next to the garage door, never letting go of my hand.

“Oh Ray, look, she’s bleeding,” Mom had her arms outstretched for a hug, but Dad and I just walked right past her into the house.

“She’s fine Anne, nothing a little bandage won’t cure. She’ll live to ride another day. Won’t ya kiddo?” Dad winked at me.

We tried a couple more times that evening after my knee was bandaged, and from that night forward, I rode my warrior as much as possible. Maybe I wasn’t the girl wonder but I felt exhilarated and free when riding; a right of passage passed down from Dad to me. And Mom? She learned to quietly manage her feelings about my bicycle riding, but always waited at the door, rubbing her hands together, as she prayed I would return home in one piece.

 

Barely Holding On…

I hate leaving Mom in a strange place, commonly referred to as a long-term care facility. I hate leaving her in the care of strangers. I hate saying goodbye. If I could trade places with her, I would in a minute. I’m younger and stronger; I’d survive. I don’t know why, but I thought everything would change now that she’s cared for, but if anything, I’m facing new challenges. I’m further away from her. I can’t protect her. I can’t pick up the phone and hear her voice whenever the spirit moves me. I ache knowing she must be so frightened not knowing anyone or her surroundings. I want things to be like they were before, my happy and healthy family, together. Consciously, I know I can’t turn back the hands of time, but if by some miracle I could, I would not hesitate. Tears fall down my cheeks as I remember how life used to be; no responsibilities, no worries, a life filled with love and compassion. My thoughts are like a whirling dervish; around and around, shouting out at me, and never stopping,

“If you knew what the future was going to bring, would you do anything differently?” The voice screams.

“Of course I would”, I yell out.

I can’t sleep; I barely eat, other than lighting up my trusty nicotine friend (if I could eat the damn things, I would). I try to watch TV, I try to “take my mind off things” (friends repeat over and over); I try and try and try, but can’t come to grips with the fact Mom is changing. Baba is aging. Dad is dead. My entire safety net has holes in it as large as my sofa. I’m barely able to hang on, but I’m afraid to let go. I have no idea how far down the landing is, and should I fall; will I survive the drop?

I don’t want to do this anymore. I don’t want to be the bad guy with Mom. I don’t want the responsibility of making decisions on her behalf, whether it is monetary or personal. I don’t want to sell Mom’s condo. I don’t want Mom to have Alzheimer’s. When I say all of the words out loud, I feel it makes me sound selfish. I admit I’m envious of my friends with their healthy and happy parents. Why can’t it be someone else, I cry. Why does it have to be Mom? I walk into my bedroom. I slowly open my closet and peek upwards. I’ve surrounded myself with items from the past and I’m amazed that I’ve kept these keepsakes. High up on the shelf in my bedroom closet contain,

• My Kanga and Roo stuffed animal (lovingly cared for since I was four years old).
• My Baby Tender love doll; now missing a leg (Mom and Dad brought her back from their one and only vacation alone to Las Vegas when I was six years old).
• Mom’s stuffed animal (poodle dog) she had since she was a child that she passed on to me.
• Four large photo albums that encompass my parents’ lives before they met, their courtship, marriage, moving on to our small family unit with my brother, extended family and too many pictures of me as their first born (I was aptly nicknamed; kid Kodak).

I reach up to take Kanga and Roo into my arms. I hold them close to my heart and squeeze tightly. I inhale the aroma of days gone by and whisper into Kanga’s ear,

“What am I going to do without Mom? Please help me”, I sob.

In the beginning there were Friday Night Dinner’s … Spring 1997

Regular dinners at Mom’s have become the new normal for the past six years. It’s definitely not the same since Dad died, but as a family, we perform the obligatory routine of going on with our lives and staying in touch. I know Mom looks forward to our dinners together because, on the day of our dinner, she wakes up early and walks over to the hairdresser for her wash and set. Once home in the afternoon, she clutches her dust cloth in hand and begins her day’s chores. Following dusting, she brings out the big gun, the hoover.

“Because you can’t vacuum before you dust, as the dust rises when you vacuum,” she always says.

She is methodical of making sure the carpet is vacuumed in perfect lines, much like a farmer plows his fields. By the end of her routine, she’s down on her knees washing the kitchen and bathroom floors.

She happily exclaims,

“You can’t mop floors, you know, the only way to get the floor clean is by scrubbing on your hands and knees. Good hard work, but well worth it.”

After work, my job is to pick up Baba (my grandmother) and head over to Mom’s where we (my brother Stephen, Baba, Mom and I) scan the many take-out menus Mom has in her kitchen. I have been secretly stockpiling them in one of her drawers for quite some time. My agenda is not so much that she doesn’t have to cook but more so, that we don’t have to eat her cooking. God bless her. She is not a great cook; in fact, she’s not even a mediocre cook, although no one would know it by the collection of recipe books she has on display in her kitchen. I remember the years when Dad, Stephen and I sat at the dining room table and she would serve one of her many recipes taken from either the Better Homes and Gardens Fondue and Tabletop Cooking cookbook or The Beta Sigma Phi International Casserole Cookbook or any other cookbook she stashed in a cupboard. She tried; there were some recipes that did work, but the ones that didn’t still remain in my gag reflex memory. Don’t get me wrong, it wasn’t entirely her fault, no doubt, it is genetic. Baba and Mom have inherited some sort of non-chef gene that they passed on to me. I always think, there are worse hereditary traits that could have been passed on.

Dinner tonight is no different. I arrive to pick up Baba at her senior’s apartment at 6:30 p.m. I immediately notice she was wearing her favourite red dress with open toe taupe shoes topped off with a mismatched brown and orange bobble necklace. She has her purse in one hand and overnight bag in the other. I can’t help but think that Mom will have a field day with this. Baba is not the most fashionable person, but her glowing joie de vivre far outweigh her wardrobe. Her love of offbeat bright colours and inexpensive jewellery is the antithesis of Mom. I can’t help but smile when I also notice two large bags plopped down beside her. There must have been a sale on toilet tissue and paper towel, I think to myself. Baba’s linen closet is packed tighter than two coats of paint with paper products and any non-perishable item. She isn’t a hoarder, just buys items whenever they are on sale. She walks to the shopping centre with her bundle buggy and purchases as much as it will carry. She then heads home and packs her cupboard with such precision that it seems like a magic trick when she takes objects out. How the heck she fits so much in one closet is baffling.

Her lips curl up into a smirk when she says, “Look closely Paula, there’s more behind those bags… see?”

When I visit she can’t help herself. She loads me up with bags of toilet paper and paper towels, even if I don’t need any at the time. She even hands me a bag for Mom. Every cupboard and closet in my apartment contains some sort of paper product given to me by Baba. I have no idea if she thinks I have issues or it is her way of expressing love, but it doesn’t matter, I take whatever she gives me to make her happy.

We sit down in the dining room. Our regular seating arrangements at the table are Mom at one end of the table, me at the other end and Baba and Stephen in the middle opposite one another. Tonight Chinese food containers sit perfectly in line on the table runner in the middle of Mom’s oak table. To lessen any mess, a floral cork place mat sits directly under each of our plates. A fork and knife is positioned precisely in line with the person’s across from us. Mom is perfection to the nth degree.

I look over at Mom and ask, “Can you please pass the egg rolls?” She stares at the table. I repeat, “Mom, the egg rolls?”

“Oh, sorry, what did you want?” Mom looks at me questioningly.

“The egg rolls…right in front of you… on the table?”

Mom looks over at Stephen,

“Can you please pass the egg rolls to your sister?”

As is always the case with my younger brother, he teases me by almost handing me the container then yanks it away before placing it in front of me.

“Really? Are you five years old again?” I sarcastically say. He grins at the exact moment Baba pipes up smiling from ear to ear,

“Paula, I’ll take another if you don’t mind, I love egg rolls.”

Feasting around the world is our monthly routine. This evening is Chinese, a few weeks ago it was Italian, a few weeks from now, who knows? Mom always has the last word on what she feels like eating, and each of us goes along with her choice. Tonight, my brother has to eat quickly as he is meeting up later with his band to jam. Stephen plays bass guitar in his spare time. He is an accomplished musician; self-taught but cannot read sheet music. He and his friends have been playing music together for years. I remember it like yesterday; Dad was chauffeur in the evenings with Mom and I in tow when Stephen was sixteen. His band had secured gigs in bars around the Toronto area, some seedier than others. Nowadays his band just jams. Instead of a garage band, it is a basement jam.

“What time do you have to leave?” Mom asks Stephen.

“As soon as I’m finished eating,” he replies.

This is where he takes after Mom; he can eat anything and not gain a pound. I, on the other hand, have inherited both Baba and Dad’s trait of; look at food, gain ten pounds.

Stephen has many of Dad’s mannerisms, sense of humour and calmness. I, unfortunately or fortunately depending on your point of view, have inherited Mom’s seriousness. That’s one of the reasons Mom and I butt heads at times. Stephen has an uncanny knack of letting things slide. He’s able to refrain from most, if not all, confrontations. And Mom? Well, like most mothers when it comes to their youngest child; he is her baby and can do no wrong.

Baba turns her head towards me and begins the conversation,

“So Paula, What are your plans for tomorrow?”

I tell her that Mark (my partner) and I are going for a bike ride on a rail trail. Baba never learned how to ride a bike. In fact, she never learned how to drive a car, but is well-travelled in public transport and travels alone to nearby shopping malls a few times a week.

“Not bad for an eighty-seven year old.” She always says.

The bike ride weaves into a famous Baba story,

“We had no money when I was a kid. We were so poor we even had a cow for a year that my Mother would milk everyday.”

I am just about to ask about the cow when Mom gets up and walks into the kitchen. That’s strange, I think. Why is Mom leaving the table in the middle of Baba’s story? I tune back into Baba’s story and realize she is talking to Stephen about his music. Damn, I missed the entire story because Mom ran out of the dining room.

Mom appears holding up an empty bottle of wine in front of her and says,

“Anyone want some wine?”

Smiling, I point out that the bottle seems to be empty.

“Oh, silly me, wrong thing.” Laughing she swiftly runs back into the kitchen and fetches a full-unopened bottle.

I haven’t seen this lighthearted side of Mom for a very long time. I’m hopeful that after losing Dad a few years ago, she has finally settled into her new life without him. She deserves happiness. The past few years have been difficult for her. She has had to learn how to pay bills, write cheques, balance a chequebook, file her tax returns, grocery shop, all things many take for granted, that Dad used to do for her.

Later that evening once Stephen has left, Baba and I decide to sit in the living room and watch some TV.

“Mom, where’s your remote?” I holler.

She yells out from the kitchen where she is loading the dishwasher,

“It’s on the thing.”

The thing? Now, what the heck is the thing? Usually, it is on the end table by her lazy boy chair, but I have no luck finding it there tonight.

Again, I question,

“Mom, it’s not on the end table, where else could it be?”

She rushes into the living room with crimson wine sloshing in her goblet,

“What?” she asks.

I repeat the question, “the remote, where did you put the remote?”

Baba, probably noticing I was getting impatient, drops to her eighty-seven year old knees and says,

“It has to be around here somewhere. I’m always losing my remote. Oh Paula, It used to be a lot easier years ago when you all you had to do was…walk up to the TV, switch it on, and turn the knob for the stations. I’m sure you don’t remember that, but I know Anne does. Don’t you Anne?”

What a picture; Baba on her knees feeling around under the couch. I admit, she is pretty limber, although hindered by bad eyesight, diagnosed with macular degeneration ten years earlier. She’d always say, “That was a tough hard pill to swallow.”

Feeling like a detective on a nighttime TV show I see Mom’s eyes stare into the distance. I question Mom.

“Okay, when was the last time you watched TV?” She says nothing, just stares.

“Mom? Are you okay?”

As quickly as the spaced out look occurs, it disappears and she says,

“I think I may have put it over there,” pointing to the buffet in the dining room.

Before making my way to the buffet I bend down to help Baba up from the floor. She grunts as I lift her to a seated position. I make my way over to the buffet, and low and behold, there it is, the elusive remote. For some strange reason, Mom must have placed it on the buffet. Whoops, I should be more patient with her; it’s not like I haven’t done that before. In fact, when I’m dusting (which is not that frequently), I take things off a table and put them somewhere else, and yes at times I forget where I had place them. Although with Mom, everything has its place, there is never, and I mean never, a deviation. Whatever, case solved.

“Anne, why don’t you forget about cleaning up for now?” Baba says. “Sit down and relax!” She pats the seat next to her.

Good luck with that Baba, I think. Mom is like the energizer bunny; she keeps going until her batteries run out, which is hardly ever. As though Mom reads my mind, out of the blue she sails into the living room and seats herself in her lazy boy chair. Three generations sitting and watching Unsolved Mysteries. However, Baba always has a something to say during the show. “Oh my. That’s just horrible. That’s why I place a box of dishes every night on a chair at my front door. No one will push their way into my apartment without me hearing those dishes crash.”

Smiling at Baba and looking at Mom, I can’t help but think; maybe Mom is beginning to find her own rhythm. Maybe she isn’t worrying about things being left undone in her home. I hope this is a good sign.

Once the show ends and I’m about to say goodbye, Mom asks if I can help her pull out the hide-a-bed sofa for Baba.

“Sure.” I reply.

The hide-a-bed sofa is where Baba always sleeps when she stays overnight. Mom runs to the linen closet to gather sheets, pillow, and blanket.

“Anne, I can do it myself, no need to bother Paula,” Baba says as she begins removing the sofa cushions.

Looking over at Baba I say,

“Baba, sit down, I’ll do it. Relax.”

I stand near Mom’s lazy boy chair and pat the cushion to get Baba to sit. (She thinks she still twenty-years old. It’s time she realizes that I do not mind helping out). She smiles and gives in; perhaps the down on the knees stunt has taken more energy out of her then she will admit out loud.

I bend over and grab the handle and pull. Voila, bed ready to be made. I quickly move out-of-the-way to give Mom some room to do her magic. She takes the bottom sheet, flicks it in the air and lets it fall perfectly on the mattress. Without missing a step, she walks around the mattress carefully tucking in each corner. Her bed making skills are second to none. Hospital corners? Mom is the best. I can’t help but remember all the times during my teenage years when I would get up early in the morning and go to the washroom expecting to snuggle back into bed only to find Mom had made it. I never could go back to sleep, not on a perfectly made bed, compliments of Mom. Next, she takes the upper sheet and tucks in the two bottom corners and nearly finishes it off with the blanket. The piece de resistance ends with her… tossing the pillow on the mattress? Wait a minute. That’s new. It is like she is throwing a Frisbee in the air.

The haphazard tossing of the pillow is a far cry from what I remember. Mom’s perfection is a little off; the pillow is not in the exact centre of the bed. That’s weird, but then again, she has downed a couple of glasses of wine, maybe her vision is a little off kilter. I look over at Baba as she leans forward in the chair to get up when all of a sudden; Mom grabs the blanket off the sofa, pulls it off and dumps it on the floor. She grabs the upper sheet and repeats the same motion. She is making the bed over again. Maybe she notices the placement of the less than perfect pillow. I watch as she bends down to undo the corners of the bottom sheet and in one quick swing takes off the bottom sheet and pillow and reveals the naked mattress. I look over at Baba as she sits back down on the chair. What the heck is Mom doing? Baba and I look at Mom in silence. Once again, Mom seems to be in her own little world as she begins to make the bed all over again. This bed making action repeats another three more times before I speak up.

“Mom,” I ask. “What are you doing? The bed is fine.”

No answer. She keeps repeating the actions over and over. We must be up to five times by now, (it’s like Baba and I don’t exist). Baba’s eyes began to tear up; I’m not sure if it is because she isn’t blinking or whether she is upset at the new bed making experience. We are like statues, not moving or breathing, all the while Mom continues making and unmaking the bed. I feel my mouth open and think of all the times Dad would say, “PauIa close your mouth, you are not catching flies.” I smile at that memory for a second, and then wait for Mom to stop. When I see my opportunity, I take it. I touch her on the shoulder,

“Mom, the bed is fine. You can stop now.”

(Whatever fugue state she is in; disappears), she immediately snaps back to reality when she feels my hand on her shoulder.

“Are you okay?” I ask.

I haven’t witnessed anything like this before. Yes, Mom is on medication for high blood pressure and controls her on-set diabetes with diet, but I wonder if this is a blood sugar issue?

“I’m okay. I’m not crazy you know.” She snaps.

I look at her questionably and jokingly say,

“I never said you were crazy. It’s just… the bed is fine. You made it perfectly the first time, you don’t need to keep making it over and over again.”

“I never did that. What are you talking about?”

And there it is, Mom’s evil eye. The squinting eyes, curled up face and snarl. I know I’m not going to win this battle. I have been on the receiving end of Mom’s temper only a few times in my life and know things will escalate if I push back. I take the high road this time, and say calmly,

“I think I’ll get going now. Unless you need any more help?”

And just like a switch that flips back on, the real Mom resurfaces.

She smiles and looks up to me saying,

“No, I don’t need any more help, but do you have to go so soon? Why don’t you stay a little while longer?”

I look over at Baba as she leans over to get out of the chair. I run over and take her by the arm to help her up. She looks up at me wearily and says,

“I think I’m going to change into my nightie and call it a night. I’ll see you soon.” Then reaches up, hugs me and gives me a big kiss on the cheek.

Mom sees this as her chance to comment on Baba’s outfit,

“Mom, I don’t know why you wear that huge ugly necklace and those shoes, they don’t even match your dress.”

I interrupt whatever else Mom may have to say to Baba,

“Of course, you’ll see me, don’t forget, I’ll pick you up tomorrow night and drive you back home.”

I turn to look at Mom, shake my head and say my goodbyes for the evening. I just don’t get it. Why does she always have to pick on Baba? Why can’t she ever let things go? I have to admit that Mom looks tired, but can’t help thinking, something’s not quite right with her and I can’t put my finger on it.

I walk to the door with Mom next to me. She hugs me and repeats her mantra as I reach the door,

“Good night, now don’t forget to call me when you get home. Two rings then hang up and I’ll know you got home safely.”

“Oh Mom, I’m only a minute away. Do I have to? I’m not a kid anymore.” Now in my thirties Mom knows I’m an adult, although she will tell anyone who listens that I will always be her little girl forever.

“You know I worry about you. You’ll understand when you have kids, the worry never goes away.” Mom smiles.

Kids? She should know by now that will never happen. I don’t have time or stability in my life, not to mention the huge responsibility that comes with having children. I get it with Mom; she always says the best time in her life was when Stephen and I were kids, but she must realize her and I are two totally different people. It’s a different time and world now. First, at the age of nineteen, I helped care for my Nana as she was dying of cancer. Then in my mid-twenties I helped care for Dad in his final year before he passed away from cancer. All this makes me think, there is a gene that I carry. I can’t think of bringing a kid into this world. What if I receive news I’m dying from this horrible disease and leave my child to grow up without a mother, or worse, what if my child develops incurable cancer? No, no kids for me.

As usual, I reluctantly agree to Mom’s sign of safety. At home, I dial Mom’s number wait for two rings then immediately hang up. I change into my pajamas and head to bed, but find myself tossing and turning. I can’t stop my brain from playing out the entire night over and over again, just like Mom’s making and re-making of the bed. It has to be a blood sugar issue, I think. There is no other logical explanation.