If you can’t fix it…laugh!

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I’ve kept journals for each of my daughters since they were born…it’s been a minute or two. So as I go through some of their escapades over the years, I think that Erma Bombeck may definitely have been on to something when she said, “All of us have moments in out lives that test our courage. Taking children into a house with a white carpet is one of them.” I know I’ve lived, breathed, and bought the t-shirt to explain those courage-filled moments that I’ve experienced many, many times over the years, some of which involved a white carpet or two.

Take the time that I had just (and by just, I mean minutes before) finished paying a gentleman for having cleaned my off-white carpets…they were pristine clean and just glistened in the sunlight…only to hear what I thought was a tap running in the bathroom! So wrong…so very wrong was I. That faucet was my youngest daughter’s pooch who felt that these fresh carpets were a little off, and so she christened them with enough urine to fill a stadium. I may…and I am not over-exaggerating when I say this…have had a Category 7 meltdown at that point.

Or the time that our first dog, Easy (my eldest daughter’s name choice, not mine) got into some freshly watered floor plants in my absence, turned them over and rolled into all that wet mud, grinding it into my off-white carpets. What remained was a nice hue of brown that stayed in their fibres for the entirety of their existence, no matter how hard I tried to remove the stains. Another cause for a meltdown.

Or the off-white carpet in one daughter’s room that resembles something akin to an explosion of apocalyptic proportions with remnants of make-up and hair products ground into its fibers just for kicks, more of said puppy’s lack of bladder control and an overall sense of a teenager’s wild kingdom. I can’t say that installing creamy coloured rugs was an act of courage…it was more likely just plain denial about what lay ahead with toddlers and teens. Either way, I won’t be winning any awards for my interior designer home!

Erma also went on to say that “If you can’t make it better, you can laugh at it.” Based on these experiences alone, and as a mother to now three adult daughters, I may have spent the better part of my parenting life in perpetual ‘guffaw mode’.

One daughter has lived the past six years of her life travelling the world, living in tents on the side of mountains. Back in civilization, shutting doors wasn’t really her thing. And by doors, I mean cupboard, closet and exterior doors. Now, the cupboard and closet doors aren’t an issue for her, because at 5’1”, she can generally coast underneath them unscathed. Her mother and younger sister, however, have sported the odd bruise over the years as they rammed into said doors with their heads down…because who expects a door to be open in the middle of a hallway! Bruises aside, the real issue was her inability to shut the exterior doors…that isn’t really a thing in a tent. As I wasn’t a huge fan of Pepe Le Pew gracing my threshold through the back door, uninvited in the middle of the night, let’s just say that my reaction to this gaffe was enough to rid her of this habit.

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Now, reining in my youngest daughter was also a challenge at times. She is a climber…and a swimmer…and an escape artist…who has kept us on our toes many, many, many a moment in her childhood. Like the time that she climbed a 40-foot tree at the age of three because she liked the view, only to be too tired to climb down, which meant that her mother had to hike a 25-foot ladder up the tree and them climb the remaining 15 feet to retrieve her almost-napping child. Or the time that she thought she could jump into the deep end of the pool because her goggles were sure to keep her afloat. Or the time that she decided to play hide-‘n-seek with my mother, but failed to mention that this was a game that they were playing and was MIA for 90 minutes, hiding in a box in the basement while my family cased the neighborhood looking for her. I can tell you that I wasn’t laughing then, but I might giggle about these memories now.

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Then, there is our middle daughter who brought with her all the uniqueness in the world, an eclectic mish mash of personality and pizzazz. Growing up, certain fabrics and textures drove her over the edge…yes, she was my spirited wonder. To compensate, she came up with her own style and honed it over the years. To say that I learned to stare down strangers who would openly gawk at the wildness of her ensembles would be an understatement, but stare back I would. Seriously, what is not to love about a bathing suit topped with a tutu, a plaid jacket and rubber boots when cruising through the mall. As long as it wasn’t dirty or torn, she was good to go! With this child, I learned quickly not to sweat the small stuff, as it wasn’t a battle that was worth getting in to. And now, when she looks back at pictures of herself in her childhood and cringes over her choice of outfits, I howl… as I post the odd photo of her for friends and family to see.

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As I think back on those memories, Erma was right…if you can’t fix it, you can definitely laugh!

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My Mother, My Hero

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Our family celebrated Mom’s life last Saturday, a fitting tribute to a dynamic and well-loved woman. We spoke of many things…her love of life…her love of jokes and laughter…her kindness…her selflessness…her pride in her family. The list is lengthy. Still, there was so much more to say with not nearly enough time to do so, in particular about her sense of courage in all areas of her life.

Mom was strong, and I don’t mean in a physical sense, although she was definitely that, tiny as she was. She just breathed courage, despite the difficulties in her life, despite the challenges and despite the traumas, despite her fears and she fed off of this courage to do what needed to be done, dating back to her childhood and all her adult life.

At 14, Mom was asked to babysit her cousins’ children while they hit the big city to go shopping. She did so, caring for a brood of 5 between the ages of 6 months to 8 years. As her charges were just about to have a seat at the kitchen table for dinner, one of the boys noticed ‘cat eyes’ in the ceiling in the corner of the living room. She knew instantly that the place was on fire, an old clapboard farmhouse that went up in flames very quickly. She hustled 4 of the children out the door and then realized that she had left the baby in her crib. So, despite the flames shooting everywhere, she ran back in, wrapped Carmelle in her skirt and flew out the door. By the time they got to the end of the driveway before heading down the farm road, the house was completely engulfed in flames. This took courage to run back into a burning building, especially as a teenager, but she did what needed to be done, no matter how frightened she was at the time.

At 36, Mom hadn’t yet learned how to drive. Having a license wasn’t a requirement to use the tractor on the farm, and then when she got to the city, it was far cheaper to ride the bus or walk. True to form, the practical side of her won out so that getting a license wasn’t a priority. However, it became one when her daughters were involved in every activity possible and her husband worked shift work. So, in her mid-30s, she opted to learn, and pass the test she did. Based on her driving skills over the years, I would guess that the instructor passed her out of pity, but I will say that learning to drive on slippery, snow-covered hills is a serious act of courage. Doing so at 36 when you aren’t quite as fearless as you were in your teens is even more so.

At 38, Mom wasn’t a high-school graduate, education not being a priority either on the farm. This bothered her, as she was adamant that her daughters do well in school. So, she went back to high school, sitting in class alongside 17- and 18-year-olds as she completed her math, English and elective classes. For those of you who haven’t been in a high school classroom any time recently, believe me when I say that this takes enormous courage, even if it was in the ‘70s. She still talked about how well she did in algebra in Math during those times, as it gave her such an immense sense of pride.

At 43, her eldest daughter lost a close friend in an alcohol-related accident following her Grade 12 graduation. Not wanting to have any other child or family go through this pain again, Mom spearheaded a Safe Grad for her second daughter’s graduation the following year. She met with incredible backlash from community members, but she held her ground, as she believed strongly that we could do so much more to protect students than allowing them to go off to a bush party following their grad dance. This took courage, but her feistiness won out, Safe Grad was born and students went home safely to their parents each year thereafter.

At 50, Mom chose to take her life back. As a young child, she was a victim of sexual abuse while attending school at the convent. This impacted her entire existence, bringing about guilt, shame, and self-loathing, and guiding her decision-making for most of her life. Living under this cloud was exhausting and absolutely sucked the life out of her. So, she chose to get help, to release the pain and the guilt that came with it, to make right her wrongs and to become healthy again. Having to relive that trauma and getting better because of it takes a courage that I can’t even begin to understand, let alone articulate. But at 50, she began that journey and did just that.

At 74, Mom lost her life partner of over 50 years. Learning to exist without somebody who has been by your side for over half a century in a way that allows you to live a fulfilling life takes courage. She was terrified to be alone, but she made the best life possible for herself, surrounding herself with great friends, volunteering, her sports and her laughter.

I’ve learned over the years that my mother was the embodiment of courage and strength. So when people tell me that I am a strong woman or that my daughters are really courageous as they travel the world, I know where these gifts come from. We learned from the best.

Grief is a Tricky Thing

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Grief is a tricky thing. It hits you at the strangest of times, in the strangest of places and in the strangest of ways. My sisters and I each deal with our pain in our own way. It seems that there isn’t one particular way to go through the grieving process, as everybody’s journey is different. This is mine.

It has been almost four weeks since Mom has passed away and it is just over five years since we said goodbye to Dad. Losing him was absolutely gut-wrenching for me. He was my person, my go-to, my everything. And although I knew that his passing was 100% the best thing for him, it did not stop the tears from falling on a daily basis for the better part of a year. That goodbye was by far the most difficult in my life up to this point, in large part because I hadn’t experienced what it was like to lose a parent. And so I would get in my car every day after work and head home, tears flowing freely as I remembered experiences shared with him, missed him, or just thought of him.

And then I painted my kitchen, living room and family room…because it seems that I need to be moving when I am grieving. Strange to some, but this definitely keeps me grounded.

Now with Mom gone, I am not shedding tears in quite the same way, although they hit at the most inappropriate of times…like in the card section today when I realized that I wouldn’t be buying her a Mother’s Day card this year…or the frozen food section where I came upon some frozen perogies, which will never be as good as hers…or when I forget that I can’t call her to share the latest news, and I am reminded of that in the lineup at the bank.

True to form, however, just like my grieving process when I lost Dad, I still need to work on projects, as it helps me breathe and work through the heartache. So, I am Marie Kondo’ing the hell out of my home…and the effects of this process have been therapeutic.

That said, I was excited to share my progress with Mom one day after I’d gotten through a third of my pantry, with MANY things strewn all over the hallway. So I called her…only to be reminded that she was gone when I heard the electronic message on her answering machine. The tears flowed like crazy at that point, as did my frustration with my foolishness. Angry at myself for forgetting, I reefed on a bag of coloured feathers on the top shelf of said pantry, a bag that we had for some craft idea dating back to when the earth was likely cooling (it’s been a minute since I’d tackled this particular closet). In my haste, I broke the bag open and feathers floated up in the air, sticking to my hair and the tears on my face. It was not an attractive look. I only compounded this when I stepped back in an attempt to dodge the floating feathers, knocking over a container of flour and then stepping in it. Did I mention that it was a fairly full container? Let’s just say that I was not only covered in multi-coloured plumes, but a nice coating of white powder as well. At some point, my cousin mentioned that I looked like I was getting ready for a KFC fryer. And so I laughed…hysterically…the belly-filling kind that hurts your side…because lets face it, I looked beyond ridiculous. And amidst the tears and the laughter, I felt much better. I think that maybe this was a sign from Mom to relax and lighten up, the joke-teller that she was.

In the meantime, I continue to organize and declutter my home because it provides my heart with some sort of reprieve for a little bit every day. And I will continue to let the tears fall when I need to for as long as I need to, because this is my journey, and it works for me.

Gifts & The Unexpected

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Mom left us on Tuesday, March 26th after a very short illness, following a cancer diagnosis on January 5th. I can’t say that it was a battle, as she very quickly came to terms with her diagnosis, accepting her outcome with dignity and a few laughs. Although her outlook on her prognosis made it infinitely easier for us to process the fact that our mother was no longer going to be a part of our daily lives, dealing with her diagnosis was anything but easy.

There is nothing simple or easy about helping someone transition from a healthy active and contributing member of society to one who knows that her days are numbered. Our health system is certainly not designed to alleviate any of this stress…more often than not, we were learning that there was a tendency to add to it, rather than reduce it. But I digress, as I wanted to share some of the unexpected things that occurred over the past three months as well as the gifts that came because of it.

The Unexpected

We very honestly believed that our mother would live well into her 90’s as did her father. She was not only physically fit and very active, she was very sharp as well. So to go from a person who walked everywhere to not being able to walk at all within the space of four weeks was mind-boggling. Yet, we adapted to these changes easily, as it was just the thing to do to support her.

We were also not prepared for the changes to her physical appearance. Dexamethasone is a steroid used to shrink swelling in the brain around the tumour. Although it does help, a side effect is some serious swelling and puffiness in the face, referred to as ‘moon face’, and although that wouldn’t be the term that I would use to describe it (it was more like a Cabbage Patch doll back in the day), Mom’s face was suddenly puffy, swollen and very round. Somewhere under that stretched skin was our Mom, and it was bizarre to experience.

At the same time, another side effect of this drug is the likelihood of thrush or canker sores in the patient’s mouth. Unfortunately, Mom suffered because of these sores, making eating very painful. To treat her, after a gongshow between the palliative team and her family doctor, Mom was first given Magic Mouthwash, something that only numbed the sores slightly. Then, when in Riverview, she was given Nystantin, which also didn’t do much to relieve the pain. Now, my sister requested Fluconazole, and had done so for approximately three weeks to no avail. However, due to the state of her mouth, the last doctor at Riverview chose to prescribe this drug, and strangely enough, her mouth started to feel better. It’s crazy what may have happened if this particular drug had been prescribed as requested four weeks prior.

All this didn’t seem to affect Mom’s appetite while using Dex, however. She loved to eat, which I wouldn’t have expected given her propensity to not want to eat when she wasn’t feeling well. However, she polished off every plate with relish and was very enthusiastic about the meals that were prepared for her. This was always followed up by a request for ice cream, because on the day of her diagnosis, her doctor told her that she could eat all the chocolate and ice cream that she wanted. She took this very much to heart and enjoyed bowl after bowl of cookies ‘n cream ice cream and ice cream sandwiches, to the point where it became a running joke with us. When questioned about snarfing back her third bowl of ice cream, she eyed her interrogator and responded, “What? It’s not going to kill me!” And so, we stopped asking questions about her newfound passion for dairy products, and continued to help her make up for lost time during all those years when she didn’t eat ice cream.

I also didn’t expect our health care system to be so disorganized and frustrating. Don’t get me wrong. We met with extraordinarily empathetic and kind individuals, particularly when Mom was placed at Riverview during her final three weeks. And she was very outspoken about how grateful she was for the care that she was receiving. Now, keep in mind that one of her daughters or grandchildren was usually at her side to advocate for her, but she felt that her caregivers treated her very well. So I will hold on to this.

I did not, however, ever consider having to advocate for my mother with such intensity throughout her short-lived disease. I did not ever think that I would have had to convince a doctor that she required pain medication to ease her suffering, because he couldn’t determine if her pain was cancer-related or attributed to something else like old age. Given that the woman was close to the end, I’d say that was probably a moot point at the time, but again, having to go through this experience was overwhelming. I also did not expect to hear this same doctor ask my mother how she felt having a strange man rub her belly. I’m assuming that this was an attempt at humour, but when my sister informed him that he had crossed the line, he was quicker to move to get the necessary drugs. Again, offensive and not appropriate then…or ever!

The capper was the arrival of the social worker designated to our case. She arrived an hour and a half before my mother passed, asking if there was anything that she could do for our family. Keep in mind that this was the very first time that we had met her in the three weeks that Mom had been a resident at Riverview. I’d say that she was just a tad late to the party.

My advise to you

Whether you are the one who has been physically subjected to this disease, or you are the support system in place to help your loved one, ADVOCATE…ADVOCATE…ADVOCATE for that person. Speak up, speak often, speak loudly if necessary. Do whatever it takes to get the answers that you need to process this information. Do whatever it takes to ensure that your person gets the care that he/she needs. Do your research and question everything so that you have a grasp on what is going on. And when they begin to throw large words your way in an attempt to dumb you down, force them to speak in a language that you can understand. DO NOT GIVE UP!

The Gifts

As much as a terminal cancer diagnosis sucks, it also gives you time to say what needs to be said to the people that you love. Although we could have used so much more than 11 ½ weeks, this allowed everybody in our family to share their thoughts and feelings with Mom, whether it was her children, grandchildren, sisters, brothers, nieces and nephews or friends. And we can find comfort in the fact that she absolutely adored us…quirks and all. When my youngest Face-timed her from Peru, she let Mom know once again how amazing she was as a grandmother and how important that she was to all the kids…and then she began to cry. So my Mom wrapped her arms around the iPad and held on tight in an effort to comfort her. When I suggested that Brooklyn might not be able to see her, Mom said, “No, but she knows that I’m hugging her.” Okay, so more tears. This gift of time, albeit it very short-lived, was an opportunity to say all that needs to be said so that the one leaving and those staying behind have that sense of peace that comes from knowing that you are loved.

My mother also made a tremendous impact on the people in her life, which was evidenced by the people who came from all around to spend time with her in her final weeks. Although we had met many of them over the years, we had also heard many stories about some of them from her childhood or her bowling days, neighbors and former colleagues. Being witness to these friendships allowed us to see our mother in a different light, because although she had always had a great sense of humour, it was on a whole different level with her childhood friends. Somehow, in the midst of a terminal diagnosis, they just allowed themselves to be, and Mom did that in our presence with her friends. This was a highlight for me, not only because I enjoyed watching her giggle like a schoolgirl with her best friends, but I was able to witness their absolute love for my Mom. It was incredible.

We were also blessed with an amazing support system. Friends cooked for us, looked after our dog, showed up with a tea when needed, or a shoulder to cry on. They watched over Mom when we needed to run errands and stayed with her so that we could pay some bills. I believe that what you put out there in the world will come back to you three-fold, and in Mom’s case, she gave so much of herself during her very active lifetime, something that was paid back many times over during her final 11 weeks here on Earth. Their thoughtfulness and incredible support was another gift, and so very greatly appreciated.

My advice

Be open to the support that is being offered, because any time that you are dealing with a loved one’s terminal illness, your whole physical, emotional and mental state will take a major hit. You will need that support to remain as healthy as possible to continue to be there for your loved one.

Then, and most importantly, don’t wait for a cancer diagnosis to be open with your loved ones. Tell them that you love them daily, or as often as possible. And if it takes a cancer diagnosis to open up those floodgates, keep them open, because the gift of your love is the best goodbye.

 

We Need To Do Better…

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This is not going to be my usual ‘there’s a lesson in there somewhere’ post. Let’s just consider it my first published rant.

Have I mentioned that cancer sucks…royally? Have I mentioned that navigating the health system for a person who is dying with cancer is beyond ridiculous? This is our family’s experience.

A once vibrant woman, my mother was diagnosed with glioblastoma all of 11 weeks ago and has been reduced to a swollen mess, unable to walk, let alone hold herself up in a sitting position. Initially diagnosed at one hospital in Urgent Care, she was transferred to another where her cancer was confirmed. During this time, we spent every day with her, ensuring that her needs were met as the staff were run off their feet. In that time, we met with not one, not two, but five different teams, each focusing on a different aspect of her care. With each meeting, we had to repeat the same information as it seemed that not one of the teams was effectively communicating with the other, leaving us more and more confused. Now, it could be that they came to the realization on their own that my mother’s needs weren’t being met, but I believe the fact that my sister lost her ever loving mind may have had something to do with their sudden desire to have a team meeting. Be that as it may, her neurologist finally explained the facts surrounding her cancer and our options in a way that allowed us to make sense of what was going on. Sadly, it took one of us to blow a gasket before anything was done.

Next on our journey with this crappiest of diseases was bringing Mom back to her condo. During a 9-week period, we provided 24-hour care for our mother, with the exception of some home care that was eventually provided. Did you know that Home Care is not a possibility for somebody unless they have a person living in the home with them? Now, my mother is a widow having lost my father five years ago, so this wasn’t going to be an option. Fortunately, I have an angel for a daughter who packed up her belongings and moved in with Grandma. But I question what this budget-cutting province does for those poor individuals who are not blessed with family members living in the vicinity who are able to support them while they are dealing with a cancer diagnosis. What the hell??? The upside to this story is that the home care aides were lovely human beings and made Mom feel extremely at ease, which isn’t an easy thing when you feel awful and strangers are now in your home. However, a family member was always there during the day and overnight so that Mom could spend as much time as possible in her home.

Now, to navigate this crazy system, we were also assigned a Palliative Care Coordinator, but we soon learned that coordinating wasn’t really part of the job description. This forced us to advocate for Mom regularly, much like a full-time job. Throughout the past 11 weeks, information wasn’t shared with the team in a timely manner, so that we had to spend an enormous amount of time following up on requests for support, equipment and meds, picking up, delivering and organizing Mom’s care ourselves, so much so that I question the coordinator’s purpose in this situation. As an example of her ineptness, Mom had requested to be placed in Palliative Care at a local facility because she was deteriorating at breakneck speed and saw how much her care was impacting us both physically and emotionally. That said, she was kept on a nice hit of hydromorphone on a regular basis to ease her pain. Now, when a bed became available at this facility, our coordinator called and asked to speak to Mom. Not knowing who the person was on the other end, the home care aide passed the phone on to her. In her drug-induced state, Mom indicated that things were going rather well. So, in her infinite wisdom, the coordinator cancelled Mom’s request to be placed in palliative care. Again, my sister blew a casket, because what person in her right mind will base a decision on a conversation with a person who is higher than a kite??? This was enough to get Mom placed back on the waiting list and lo and behold, two days later, another bed became available. Now, I was on the receiving end of these calls from the coordinator, and within 10 minutes, everything seemed to be in place. Yet, she called back once again to inquire as to whether or not we wanted the hoyer lift delivered to Mom’s condo to help with her daily transportation to and from her bed. Now, given that Mom was now being placed in palliative care, and the coordinator was the same person who had just made that confirmation, it would stand to reason that a hoyer lift would no longer be necessary, but what do I know???

Then, there were the regular requests for pain meds and meds for mouth sores that were developing because of steroids that she was on to ease her swelling around the tumour. Did you know that Palliative Care is designed to provide pain relief for symptoms directly related to the cancer, but that the family doctor is expected to prescribe meds for things like thrush, a lovely little side benefit to steroid use? Who knew??? Now, my mother’s family doctor of close to 30 years was not of the same mindset, and let us know that now that Mom was with Palliative Care, she was no longer her patient and as such, she would not be providing any care for her. Welcome to family medicine in Manitoba! This then involved a few very direct conversations with our coordinator, as we needed support for Mom that we were having difficulty getting, and a Palliative Doctor came to the home. However, given that he had just met her for all of five minutes, he did not know her history. As such, this involved more repetition of the same information…a bit like an LP stuck on the same few notes! But, we did receive some support to deal with her pain, albeit a little late.

Now, Mom has spent close to two weeks in Palliative Care. The staff are warm and gentle, but she rarely has the same nurse attending to her needs for more than two days at a time. This means more repetition of information, because not everybody is up to speed on her chart. The fact that she doesn’t speak much any more, and when she does, it is extremely difficult to understand her, means that we need to be there all the time to advocate on her behalf. Today is another example of how frustrating this process is. The staff that have come to know her understand that she doesn’t complain and is ridiculously stoic in her resolve to handle the pain on her own. Yet today, she was suffering at an extraordinary level, so her attending nurse insisted that the on-call palliative doctor spend time with her. However, he was reticent to prescribe pain meds for her because he wasn’t sure if the pain she was experiencing could be directly attributed to the cancer, or perhaps something like old age. Here’s a news flash!!! She’s dying!!! Who the hell cares if her stomach pain is related to the fact that she is bed-ridden and has nothing to do with her brain tumor??? I repeat…the woman is dying. We treat dogs better than this!!!

Now, the capper to our week was a letter that we received from Autopac because my mother did not renew her license. Why? Because she is dying. So we contacted a service representative with this fine establishment to advise them of her diagnosis, which explained the fact that she had not followed through with a renewal. This individual’s response to us was that we needed to provide proof of Power of Attorney and diagnosis before April 1st or her lapse in renewal would be sent to a collections’ agency. Love…love…love the callousness and extraordinary stupidity of people!

So, let me just say that the emotional upheaval that comes with watching your mother waste away before your eyes is physically, emotionally and mentally draining, and on a whole different level of suffering. Having to navigate the ridiculousness of this health system to ensure that her last few days and hours are as peaceful as possible is beyond anything that I could have ever imagined, and only adds to the grief. Today, as I listened to this fool talk about her aches and pains, I was angry…angrier than I have been in a long time. Nobody deserves to suffer under these conditions…nobody deserves to die in pain. Yet, our reality is that it happens. But Sweet Mother, the system should be better at supporting those having to go through it. I believe that we can do better…in fact, I know we can.

Now my rant is done.

The Gift of Pre-Planning

IMG_6574Losing your parents is difficult. Losing your parents and then having to deal with funeral planning and decision-making brings that grief to a whole new level. I know this first hand. Neither of my parents ever discussed what they wanted to have happen as a celebration of their lives after they passed away because…well, the topic was just too morbid and they didn’t want to worry each other with that ‘nonsense’. As they got on in age, we brought the subject up every once in a while, and were shut down each and every time because we were being too depressing. And then, as will happen, my father died…so that discussion became more of an exercise in excrutiating stress and pain than organizing a tribute. His death five years ago was a gut-wrenching and traumatic experience for me. As equally painful was trying to plan his funeral with my mother as she mourned the love of her life. To be honest, I thought that our tribute to Dad was meaningful, and it helped to hear what others had to say about him. But having to plan his service under those circumstances isn’t something that I want to repeat.

The details that go into planning a funeral service or a celebration of life are insane, both mentally and financially. Which funeral home? Which cemetery? No cemetery? Cremation or no cremation? Urn? Casket? Church service or hall rental? Who is going to speak at the service? How do you celebrate your loved one? Which songs will you sing? Who will sing them? Who is going to officiate the service? What do you serve afterwards? Alcohol? No alcohol? Food? Appetizers? Full meal? For how many? Who is going to show up? And which organ do you need to donate in order to pay for the whole thing? (And although I say this last piece in jest, I am not far off in adding that in!)

Now imagine thinking about this for the very first time in detail following the death of your partner of 50 years, when your heart is torn into pieces and you are completely overwhelmed by all the decisions in front of you. This was my mother, and watching her find her way through this chaos was not only painful, but exhausting.

And so, with Mom’s recent terminal cancer diagnosis and the realization that her time with us is very limited, she has chosen to approach this conversation very differently. Having learned a great deal from her experience in planning Dad’s service, she now feels that it is better to be prepared for multiple reasons. First, you have a say in what will happen during your celebration of life. And secondly, you will spare your family the anguish that comes with making those decisions, especially when they are reeling from the loss of a loved one. And so, shortly after her cancer diagnosis, Mom planned her celebration of life and shared with us what she wants to have happen. Some of the plans are touching…others bordering on ridiculous, which of course, makes us laugh. When she requested that my nephews sing to Josh Grobin’s ‘You Raise Me Up’, we questioned if that was the tumour talking or she was just having a momentary lapse in judgement. Our group text was entertaining with gifs, bitmojis and emojis firing away at breakneck speed when I threw that possibility out to the family. After careful consideration for all of five seconds, the boys respectfully declined. Considering that we have only ever heard them belt out a tune or two following a few beverages, they felt that a live performance in front of family, friends and strangers would have been a huge stretch…and so Mom let that idea go. But she was clear in her wishes and ensured that everybody was on the same page, which makes the planning infinitely easier. We know what we are doing with decisions already made and plans in place, and for that I am grateful.

The planning aside, I do have to say that this experience is definitely surreal, as we discuss with a woman whom we love what we will be doing to say good-bye to her. Last night, it struck me that it is seriously bizarre to listen to your eldest daughter practicing the songs that she will sing at the service…in front of the person for whom she will be singing the songs. For my mother and daughter, however, this was completely natural. Throughout their practice sessions, Carly sang at the kitchen table while Mom tapped her toes and commented on how beautiful the music was while lying in her hospital bed. In her mind, it was a privilege to be able to witness this ‘live’ concert of songs that she has chosen. She figures that because she won’t be around to hear her granddaughter sing at her own funeral, enjoying these sessions is the best way to be a part of it. At the same time, it has now become commonplace to ask how she feels about a specific reading and the food that will be served. She is engaged in the conversations and making decisions that allow her to maintain a sense of control over this disease. So strange, but uplifting as well.

I think that what I have learned, having gone through both scenarios, is that making these plans in advance is a gift to your family. By deciding what you want to have happen at your celebration of life, you alleviate the stress that comes with organizing an event like this, and allow for those that you are leaving behind to grieve without having to add the extra pain of decision-making and planning. At the same time, you leave your mark on your service, and help your family to honour you in a way that feels right. As surreal as this experience has been over the past 9 weeks, I would hands down choose this route every single time. And I thank my mother for having the courage to make these decisions and share them with us. This, too, is another one of her gifts to us.

 

 

What They Don’t Tell You About Cancer…

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When our mother was diagnosed with Stage 4 glioblastoma 8 weeks ago, the doctors and oncology team gave us an overview of what to expect…the possible progression of the disease, the possible timelines, the possible side effects of the tumour and the meds that she is taking…basically, a lot of possibilities. But within these possibilities are so many ‘what ifs’ and unknowns, and the uncertainties take as much a toll on families dealing with the disease as the certainties.

This is what we do know. In the eight weeks since her diagnosis, she has gone from a vibrant, active, life-loving woman to somebody who requires constant supervision, is now wheelchair-bound and is unable to move from her bed to a chair without support. Each day, we recognize that she has faded more than the day before, making it crystal clear that her days with us are numbered. So, we do what we can to ensure that she is comfortable in her own home. And in all this craziness that is our life, we continue to learn.

These are some of those lessons…

With tears come joy

The speed of GBM’s progression is ridiculous, mind-boggling so, and with this comes a sense of complete and utter helplessness. The physical changes to somebody diagnosed with GBM can be overwhelming, because they occur literally overnight, whether it’s the loss of mobility or the facial swelling and everything else in between. None of it is easy to comprehend, basically because watching somebody that you love waste away can be debilitating. And at times, as strong as we’d like to be for our Mom, the tears still flow. What we’ve learned is that it’s okay. Let the tears flow, because with this will also come incredible moments of joy. Case in point…Mom’s exhaustion is so very sad for us to watch. Yet the moments that she shares giggling with her best friends during their regular visits is so joyful, something that we wouldn’t have necessarily experienced if we hadn’t been at home with her. So with the tears also comes the joy. And that’s okay too.

Everybody’s Journey is Different

Despite the fact that people may be living the same experience when their loved ones deal with a cancer diagnosis, not one person will process this experience in the same way. Some will deal with it matter-of-factly, others will shut down to avoid the pain, and others will lash out at anybody within a two-foot radius as their anger takes over. I’m not suggesting that you accept being treated badly by anybody, but it helps to remember that often the pain that comes with accepting a terminal diagnosis of somebody you love can sometimes cause people to say and do things that under normal circumstances, isn’t who they are. When faced with this, my sister said it best. For each of us, this is our own personal journey and we will all deal with it differently. And we are living this firsthand. Don’t take one person’s outburst as a personal attack…they are simply dealing with their own hurt and need time to work through it.

Be Grateful for the Gifts

Although crises like a cancer diagnosis can bring out our less than endearing qualities, they can also bring out the best in people. We weren’t prepared for the outpouring of love and kindness from our family and friends. We have been taken care of in more ways than we can count, with friends preparing meals so that we can enjoy our remaining time with Mom without concerning ourselves with feeding crowds of people. Others are shoveling snow for us, checking in on us regularly and coming by to make sure that we are holding up as best we can. Family and friends come by to sit with Mom, laugh with her and just be with her. This generosity and care is so unexpected, yet so very welcomed and needed. The reality is that we may not know what we need when we go through something like this, and because of this, it may take our friends to show us. And when they do, be grateful and thankful for these gifts because they are given with love.

You Will Come Out On The Other Side

Sometimes, an experience, a story, a poem or a quote will present itself at the right time and express exactly what you are feeling. We have found this to be the case often in the past eight weeks, whether it has been a photo that somebody has found in an album of Mom as a child, a story shared about her life experiences with classmates and family, or poems like the one that my sister sent us one afternoon. This poem was what we needed at that moment. And so I know that it is okay to feel what we are feeling, to hurt, to cry and maybe even to scream. And when this is all said and done, I also know that our memories and the laughter shared with our Mom will sustain us and because of that, we will come out on the other side.

I’ll bet you’ve had about enough

Of people telling you how strong you are

And how great you’re doing

During this awful, difficult period in your life

Maybe you’d rather hear someone say

How much this sucks,

How outrageous & unfair it is

Maybe you’d rather hear someone tell you

You don’t have to be strong all the time,

Or that it’s definitely okay to

Curse fate & throw a tantrum or two.

So here I am to tell you all that stuff

And more,

To let you know where I stand,

Which is right in your corner.

There’s no right way or wrong way

At a time like this.

However you work through this thing

Is immaterial to me.

All I care about is that you ask for what you need.

Lean on those who love you

And trust me when I say

That you will come out the other side.

~ Author unknown