Mourning Living Losses

Deb: Peaks and valleys are the best way to describe what my family has been going through lately. We are at that stage of life’s path where we are faced with the fork in the road. There are no signs pointing the way, no Lonely Planet guide giving us tips. We are hunting and gathering information and hoping to God that the right decision is arrived at.

My Mom’s foot has steadily improved and she is ready to be discharged from the hospital to further recover. But recover where?

The month-long stay in the hospital—between the trauma, drugs and the prone position—has produced both a pressure ulcer (bed sore) and a total loss of strength. She is now what they call “a two person transfer”. She can no longer transfer herself from bed to chair or chair to toilet. So of course the inevitable phrase “nursing home” reared its head. A blow to all of us and the specter of it has caused sleepless nights, tears, and endless circles of discussion. Add to that the sickening exposés on nursing homes on the front pages every day. The timing could not be worse.

My particular pain, which has itself developed like an internal pressure ulcer, has been in the unwanted job of holding Mom and Dad’s future in my hands. Honestly, I can deal with anything, but the agony of knowing I might make the wrong choice has been more than I can bear. I have spent endless hours researching and talking to our stellar team of support at St. Mike’s hospital who are working tirelessly to make this transition an easy and correct one. St. Michael's hospital is called Toronto’s Urban Angel and I could not agree more.

A few days ago I took my Dad home after a hospital visit. We had a particularly frank and painful discussion in the car and when I left him he said with tears in his eyes, “Debra, we trust you implicitly.” Any daughter would love to hear that but, while I was struck by the sentiment, I could not help wanting to run from this responsibility of trust. I spent the night thinking about this and how it was overwhelming me, and suddenly it hit me. I do not have the responsibility. I have chosen wrongly to own the responsibility. The only responsibility I have is to share with my savvy, very with-it parents, every single thought, every single option, every single fear. They deserve nothing less.

I realized, somewhat stunned, that this was just occurring to me. The simple fact is, we are all in this together. I was trying to do what I always do, trying to “handle it all”. I was putting this on myself.

The good/bad news in this scenario is that Mom and Dad’s bodies have betrayed them. Their minds have not. They can take all my information and offer good solid opinions. My job is to gather, shape, and offer it up. They do tend towards not wanting to cause me grief and stress, so I must keep it on track or they would just take the path of least resistance. I had this honest talk with them and Mom said, “Whatever happens, Deb, it will be because it is the best for us. This is a decision we will make together and it is not solely on your shoulders.” And a team was born.

It is still painful as we try to jump hurdles and dodge medical bullets. But I no longer feel I am falling down the rabbit hole. This past Friday we turned a corner. As soon as I identified the source of the pain, I think we all gained strength from the knowledge. The fact is, knowledge is power crept up on me again for the fiftieth time, bringing with it peace and purpose. How could I have missed that the agony was coming from mourning? We are mourning. And we have done it many times before. So why doesn’t it present itself to me each time with, “Hi, it’s me again, mourning.” But, like Dorothy, I seem to just have to learn it for myself over and over.  We have mourned before. We mourned Mom’s loss of independence when she had the stroke and we rose above it, turning her lack of independence into freedom. We have mourned these last few years as Dad has lost his independence and we continue to work towards good healthy solutions. And I look at them as my Dad takes Mom’s hand in the hospital as they say goodbye for the night. They are going strong, forging ahead. This generation continues to astound me with their strength and fortitude.

I guess the bitterest pill for all of us to swallow, is that we hold the secret of who they were. The care team, despite their best care and attention, see two old people at the end of their lives. The other day as an O.T. was giving me the results of my Mom’s cognitive test, I started to ball like a baby. The O.T. said, “I am so sorry. I didn’t mean to upset you. Do you want me to stop?” I said through sobs, “NO, I need this information! It’s just that, I wish you knew them, really knew who they were. You don’t and it’s breaking my heart.” My parents were the ones! They were the hosts, the entertainers! They were the centre of their circle. My Dad would cook like a pro and my Mom would dance the night away. They were the last to leave every single party! And it’s killing my soul that no one knows this. I wanted to scream, “Please, see this!” 

But I didn’t. It’s not their job. But I know it, and everyone who knows them knows it, and I guess that has to be enough.

The other day as we sat in Mom’s hospital room, my Mom said, “Jimmy, did you ever think we would end up this way”? To which Dad said, “No I didn’t, Anne”. I said, “Would you prefer the alternative? You have lost all your friends and you are still here.” As sobering as that comment was to digest, they sat for a moment and then smiled, knowing that despite all they are facing, they are happy as hell to be here. My parents love life in a way I wish every human creature did. They deeply mourn their lost family and friends but are in no hurry to join them, even at almost 85 years of age.

One of the Care Team experts, in an effort to assess how well I was doing as caregiver, asked me three questions. She said:

1. Are you feeling any resentment around taking all this on?

2. Are you feeling guilty?

3. Are you stressed?

And I answered.

1. I am not feeling resentment. I am so grateful that I have Mom and Dad and it is my great honour to care for them and about them.

2. I do not have any guilt. I have no reason for guilt and it is a waste of my time.

3. Hell, yeah, I’m stressed!

This week I would answer, “Hell, yeah, I’m stressed, but one tiny epiphany is melting it away, one crisis at a time.”

We will move forward together to make the rest of their life a party. Because as fate would have it, they are still the last to leave.

Barbara: Deb, I just want to thank you so much and from the bottom of my heart. I can’t tell you how, on the one hand, it’s hard to see you go through this and, of course, even harder to see your parents go through it, but on the other hand, your experience has also taught me an incredibly important thing or two.

My parents are all—knock on wood—healthy right now. But I know that can change in a flash. I find it interesting and important to remember that people—even those in medical crisis—are often capable of making, or being part of making, those critical decisions that will affect them the most. Of course, I also get that a lot of people can't––or won't––make good or useful decisions for themselves. But let's assume this is a case by case. If at all possible, they should not be outside that discussion. And we can't take on all the guilt and pressure that comes from making these hard choices. How brave and forthright of your mom to say it in so many words, that she takes responsibility for choosing whatever fork in the road you all travel down. And how lucky your parents are to have such a loving, faith-full Dorothy to hold their hands along the way.

Stepping Up

Deb: There are times in your life when you need people. You may hate that you need them, but the current and present fact of your life is that you do. I am not an easy ask. I think I have mentioned that before. I decreed years ago that I would be always the bestower and never the bestowed. Asking for help is something I struggle with. But that rug has been pulled from under me of late. As it turns out, you don’t have to ask for help when the help arrives before you can muster the courage to ask.

When my Mom had her emergency almost a month ago now, I was a big pond away. My two “stepupsisters”, Cheryl and Mary, were all ready on it. In fact they discovered the severity of Mom’s condition and stepping up got the ball rolling and was ultimately responsible for saving my Mom’s leg. They moved swiftly with no questions asked. They just did what had to be done, pushing their own lives of laundry into literal and figurative baskets. They put the proverbial band-aid on the gunshot wound until the doctors could assess and scramble to help her.  And stood by her so she would be daughtered until I could get home.

Knowing they were stopping their own clocks to step up, I thought I better get the extended family involved simply to be there for my Mom and Dad in the form of visits or phone calls. So I called my cousin Scott. He and I grew up more like siblings than cousins. His Mom was my Mom’s only sister in a family of six kids and they were extremely close. We lived down the street from one another, shared the same schools, holidays and events. Scott is three weeks older than me and his twin boys are a month older than the boy. Our boys are close as well, to our everlasting joy.

Again, I was not looking forward to asking and again, I did not have to. Before I could finish the sentence regards Mom’s precarious circumstance, his plan was launched. He called key family members, got to the hospital, liaised with the doctors and nurses, picked up and delivered my Dad, cared for my Mom, made her laugh when she was scared and kept me informed every single step of the way until seconds before my plane took off from Heathrow.

That night he and his stepupsister wife Lorette were at the hospital. My Dad had already gone home when Scott and Mom were informed that they still might have to amputate.  Mom was clearly upset but resigned to doing what needed to be done to prevent the further spread of the gangrene. Scott texted me and I phoned my Dad from London to tell him, and he was devastated. I turned to Colin and I said, “It kills me that he is sitting along at home trying to come to terms with this information.” Just as the last words were out of my mouth, my text chime rang in with Scott’s words, “Hey, Lorette was just thinking that it is so awful that your Dad is sitting there alone with this news and wants to go over, make him tea and sit with him for a while. I’ll stay with your Mom. Is that okay?” Colin and I were sitting in the theatre when I got this text and I burst into grateful tears. Spent the whole first act trying to stifle my crying and part of the second act sleeping it off on Colin’s shoulder. It was awful when I realized I would have to wait a day to get out of London, but wonderful knowing I was being more than represented.

The next day when I landed in Toronto, I arrived to copious texts from Scott reporting important details, including the fact that they had done an angioplasty which might just save her leg. His diligence breathed hope into my panic for that trip from the airport to the hospital. A trip I did not have to take alone thanks to the third stepupsister, Barb, who was there as my shoulder and my chauffeur. Arriving in her hospital room was like showing up to a party. Cheryl had just gone home to tuck her daughter in, Mary was there, my brother Craig and his wife Jacquie, and Scott had just left knowing I was on my way.

In the days to come I would marvel at friends and parents of friends and cousins and uncles and aunts who more than stepped up with phone calls and visits and flowers, balloons and candy. Erica, the gal who cleans our homes, has been twice, our friend and dog walker Claude has been three times. All I have heard this last month is, “What can I do for you?”, “What do you need”, “What does your Mom need?”, “What does your Dad need?”  Also there have been the silent steps of people who just show up and visit or phone or bake or send cards, treats and balloons.

I can’t say that this really showed me who my friends are. I already knew them well in friend and family form. They are the people who step up. Now it’s my turn to step up with thanks. Rather than say, “They will never know what this has meant to my family,” ... I’ll make sure they do.

Barbara: Okay, out and out bawling now reading this. The step-ups are a remarkable bunch, aren’t they? I’ve known your cousin Scott from your get-togethers over the years, Deb, but my appreciation and admiration for him just skyrocketed.

And I will also say that Deb’s gratitude has absolutely spilled over in this time of need. I can’t tell you how often she has marvelled at the support you’ve extended her here on the blog, at the many hours her friends and extended family have spent visiting her Mom at the hospital, at the kindnesses bestowed all around.

You know what else impresses me—and this from visits to both your mom’s hospital and Nana’s—the step-ups in the medical system. We hear so much complaining abut indifferent or remiss healthcare (a situation I don’t doubt), that it’s worth a shout-out to those tireless men and women who bring their best selves to their job at the sickbeds. We notice you too. Your good humour, your patience, your respectful care. We bow to you. We thank you!


PS In honour of today's Remembrance Day––talk about stepping up––a sweet and beautiful video. Here's the explanation that goes with it:
A lone young Belgian boy is waiting to salute the Canadian troops passing by who had been attending a memorial service. Such class from our Canadian troops - watch what they do for this little boy. The "Eyes Right" command is the biggest compliment troops on parade can pay and is reserved for dignitaries in reviewing stands. Every now and then something just makes you smile!!!

The Happy Accident

Barbara: Okay, the title is a bit of a writer’s conceit—it wasn’t a “happy” accident per se, but it did remind me of some our favourite Middle Ages-ian themes, the ones which bring us around to, yes, savouring happiness despite our foibles. Foibles like how we hate HATE to feel helpless, and how we sometimes need to be reminded that accepting help can be a great gift we give unto others.

So my dad is a hale and hearty guy, the kind whose actions and energy defy his age. Then late last week, he breaks his foot. It was, in his words, a stupid accident. He was mowing the lawn down an uneven slope and his foot twisted into a cranny. He was in pain, but mostly he just knew. After “rice”-ing (rest, ice, compress, and elevate), he knew an emergency room visit was in order. When the doctor told him he had suffered a hairline fracture, he wasn’t surprised. Pissed, frustrated, disappointed, yes. Shocked, no. But here’s the extra rub: his lovely wife, my step-mother, was in a remote far-away village on a holiday with her daughter. My dad was alone, far from his three daughters, with no immediate source of help. As luck would have it, two of his daughters (myself included) were already scheduled to arrive at his place a mere two days later. But two days later … a timeline that couldn’t be shifted. And Dad would be alone.

So my dad convinces the doctor to postpone putting the cast on until we arrive so he can take care of his urgent needs with some independence, like driving home and WATERING THE PLANTS (caps are meant to indicate daughterly sarcasm). It took at least 6 separate phone conversations to finally convince him that he could NOT drive the one hour each way to pick up my sister and her kids from the train station. It took another several convos to convince him that his very dear friend would go out of his way to do the pick-up. Not only did my father want to carry on as if nothing had happened (let me remind you that if a fracture in the foot doesn’t heal properly, then he might have issues the rest of his life), the very thought of imposing on others was anathema. But even he saw the logic of accepting the helping hands being offered all around him.

On Monday, we made sure he was properly casted up and off his foot and forbidden from any but the most mundane SEATED tasks. He was forced to allow his daughters, son-in-law, and grandchildren to wait on him hand and foot (ar, ar). And he was witness to everyone’s absolute joy in being able to pay back this most generous but independent of people.

The unhappy side of the story? Okay, he can’t walk on his foot for 6 weeks at least, is being delivered a new highly-anticipated car tomorrow and can’t drive at all, has a household that requires much care-taking, and was looking forward to frolicking in the pool with his grandkids (we did make sure his cast was water-proof, but it might be a sinking stone, right?). And thank GOD my step-mom was away—she is an unbelievably competent maven and would have been all over taking care of Dad to perfection, but certainly at the risk of her own health. Imagine this tiny 5’4” woman trying to push and pull my not-so-tiny 6’2” father on his wheelchair while casts dried and crutches were on order.

But it has been a watershed moment for my father: he learned the hard way that he is not immune to bodily malfunctions (to quote him, that he “is not a god after all” ;) ), he learned that sometimes taking is also giving, and he learned to sit back and accept heartfelt service. Frankly, it was a watershed moment for all of us. Nothing like watching your, yes, god-like father come down to earth for a brief sojourn to be reminded of these important life lessons.

As I said, a happy accident.

Deb: Just Beautiful, Barb; this moved me so much. I know all too well what it’s like to see your parents struggle with their independence. I am so glad that this was simply an accident and not an immobility life sentence. It kills me every day to watch Dad struggle more and more to be in charge of his life and to get out and live life. I watched Mum struggle for years after her stroke with it and then watched her slowly make her peace. Your Dad fought for his independence and that is fantastic.  And it seems your Dad is enjoying his stroll among the mortals. This moment will stay with him as he ages, in a very good way I think. 

Worried Sick

Barbara: Susan Sontag wrote a famous essay about “compassion fatigue” (I couldn’t find the essay itself, but this is an excellent article that discusses it). If you don’t know it, she talks about how there’s a real danger that we can become immune to the tragedies around us because we are so inundated with images depicting them. She calls this phenomenon “compassion fatigue”.

I don’t know about you, but I am not in danger of succumbing to compassion fatigue; I’m at risk of collapsing under the weight of fatigue brought on by my compassion.

I am virtually vibrating with my concerns and fears for Japan right now, never mind that those concerns are piling up on top of recent worries about New Zealand and renewed ones about Libya and Haiti, and on and on. I try to drown myself in my work, which helps in the moment, but I come out of it exhausted and inexplicably weepy. I feel powerless. I feel impotent.

Lori Landau posted an interesting article yesterday about her own thoughts on this. Lori suggests that in order to take care of the world, we need to take care of ourselves first. This is such a simple and powerful logic, I have to repeat it here. We’ve blogged a lot about personal trials and tribulations and how to lend a helping hand in times of need. But a unanimous consensus among us is that in terrible times, we are bound to “hit a wall”. This is when we most need a break to recuperate and heal. For each of us, this process will involve something different. Lori recommends meditation. Her point—and rightly so—is that through meditation, we can also increase our communal energy. And that communal energy can bind us together and give us an exponential healing power, even in the worst of times.

Now I am terrible at meditating. I’ve tried it to little avail. But I can see the beauty and truth in joining spiritual forces and BELIEVING. If there is one thing that exemplifies the best of the human spirit, it is our ability to prevail, adapt, and grow. We can’t give up now. We have to believe in ourselves, in each other, in good. Let’s not get so fatigued that we succumb to it, that we settle, that we give up. “Believing” might not be meditation in the classic sense, but it’s the kind of meditation I, for one, can grasp. It gives me energy when I most need it.

Deb: Barb, wonderful food for thought. I too have been struggling with this. I look at the photos and it looks exactly like a disaster movie. It looks unreal and surreal and as a result, it is hard to grasp. So I find myself instead focusing on the individuals.

I was struck by a photo in the newspaper of a little boy. He must have been around three or four. He was standing in front of a man in full radiation gear, as the man waved a wand over his tiny self. His eyes were wide and his little arms and legs were spread-eagle. He looked not terrified but aghast. At least as aghast as a tiny boy can look. And I sat staring at the picture of his sweet face and thinking that no matter what happens in the rest of his life, this is the defining moment. He will never ever ever forget this moment. It will shape who he is, and who he will become.

I have meditated since I was twenty. I kept it up for years and years. I picked it up during menopause and it was a great help, but since then I have strayed again.

So Barb, you have inspired me to slip into my Transcendental Meditation and send loving thoughts of peace and hope and healing to the Japanese people. And as I repeat my mantra, I will think of them, one human at a time, through the face of one tiny little boy.