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Category Archives: Network Stories

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Memoir of Mourning: Journey Through Grief and Loss to Renewal (Book Review)

Perhaps you fear losing the parent you care for.  Or maybe, you fear your own death as you care for your dying relative.  Maybe you just don't know who you will be when your loved one passes and leaves you alone in the world, without the iden...

Rainbow Paddling

By Dallas Hinton

Nora on the lake

Our daughter Nora, born with Down’s Syndrome, has for some years been known as Rainbow—she chose that name because she love nature and it seemed to suit her. At the end of Grade 10 she had a …

Four Ways to Have Fun This Summer  

We asked a few of our members about what they get up to in the summer. Here are their responses:

 

Corey – Disk Golf

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Corey is an energetic man with a big heart who loves to chat and tell stories. …

Advice for New Caregivers

Today's guest post is by Derek Hobson, BA.  Derek is the editor for ConciergeCareAdvisors.com, a senior care referral agency. He developed a passion for elder care when he became the primary caregiver for his grandmother. Since then, he has sought to inspire fellow caregivers as “there is no success without hardship.” 

When I was 20 years old, my grandmother was diagnosed with a slow progressing form of dementia. She didn’t need care immediately, so we had time to research options. We read books and countless articles, we swapped knowledge over dinner, and frequently talked to our grandparents about how everything would work out given our lifestyles. And yet, when the time came to provide care for her, I could not have been more unprepared.
Although I had a job, I was a full-time student, so work was primarily for a disposable income. Since the rest of my family had full-time jobs and my grandfather didn’t drive, I received all the phone calls and texts. I suffered from more stress than I’d ever experienced before. It seemed like my phone was buzzing incessantly and it was always to help my grandmother. I had to cut back my hours at work; I didn’t have time to spend with friends; I was falling behind in my studies. To make matters worse, I had no one to talk to about it.
I felt like I was not making a difference and that mindset was like a poison, making me grow more and more resentful – of my grandmother and my family. My family only called me if they needed something for my grandmother. I wasn’t getting enough sleep and ate more fast food than I care to admit. I did not understand sacrifice.
Despite all of the time I dedicated to figuring out how my day-to-day routine would change, none of it prepared me for how my lifestyle changed. And the only reason, my livelihood improved was because I started talking about it. From that, I’ve learned a few things to pass on to new caregivers.
  1. Tell Your Employer
No matter what your job is (and even if you don’t cut back on your working hours), tell your employer about the change in your life. If you do get that emergency call to help your loved one, they will be infinitely more understanding.
  1. Nap When You Can
Sleep becomes a challenge, especially if your elder is suffering from dementia like mine was. Their sleep schedule changes too – some of the worst emergencies happen during the early morning hours or mid-evenings.
So if you come home from work or school and someone else is taking care of your elder, then nap – you’ll be glad you did.
  1. Make Time For Yourself
There’s a good chance you’re not taking enough time for yourself. Even if it’s just a 15-minute walk every day, you need the air – plus, turns out a 15-20 minute walk does wonders for your heart.
My situation was a bit different since my whole family was working together. But you can always ask your in-home caregiver to stay an extra few minutes while you walk or a trusted neighbor. Don’t skimp on yourself.
  1. Eat Right
I’m not the only one who didn’t eat right. It’s a crisis among caregivers! If you talk to fellow caregivers, you’ll find that – for a time – no one eats well. However, making healthy meals and continuing to cook helps you regulate your time and you’ll feel better – believe me!
  1. Be Vocal And Ask For Help
This is the perhaps the most crucial for new caregivers. You need to talk about it. And I mean really talk about it – not just complain at someone. If you ask for help, you’ll get it. And you need to ask because It doesn’t matter if it’s a caregiver support group or a senior care service, we all feel selfish and guilty when about asking for help. We feel doubly guilty when we ask for help taking care of our elders, because we all know that eventually it is going to be rewarding.
Yet, one of the worst parts was reading about how rewarding being a new caregiver is and feeling like I’m the only one shouting, “When is it going to be rewarding?!”
But I’ve since learned that the reward isn’t something you get immediately and oftentimes, you won’t even feel it while you’re the caregiver… but when my grandmother passed away, I knew I did everything I could for her. I spent quality time with her that I would never have had a chance to otherwise. And there were days where she gripped my hand or smiled that old, familiar grin that let me know she was going to be alright.


That was rewarding.

Setting Roles, Boundaries and Limits in Mothering a Complex Child

One day a few months ago, fellow disability Mom and writer Jennifer Johannesen sat down with me for a chat.  (I highly recommend Jennifer's book and her blog- they are at the top of my favourites list.)  In a previously published portion of our chat, I introduced Nicholas and our family life.

Here, I discuss the pain and joy in parenting a complex child as well as the perils of navigating the health care system to get the best treatment for our son.



00:05 – Distinguishes between parenting and the role of the therapist
01:41 – Discusses types of therapy and her right as a parent to make decisions
02:46 – Shares an example of how invested she was in therapy
04:27 – Identifies the moment when she realized what her role should be
05:22 – Cautions against allowing the parenting role to be overtaken by therapy
09:37 – Shares a story about poor communication of medical information despite her extensive experience
12:52 – Encourages parents and professionals to establish boundaries and role definitions
16:31 – Discusses ‘age-appropriateness’ for both the child and the parents
20:22 – Shares her son’s adjustment to moving away from the family home




The Stories We Tell Ourselves

The people of the Hopi First Nations understood the power of stories. They had a strong oral tradition and used storytelling as a mean to transfer wisdom from one generation to the next. Carefully embedded within each story was the values, skills and knowledge required to navigate the challenges of life successfully.

In my journey to create peace and joy in my life I too came to recognize the power of stories - both the stories I told myself and the stories I allowed to be told to me. I learned that by carefully managing these stories I could create the experience of peace and joy at will. The secret to living joyfully was to recognize my role as a storyteller and to take full responsibility for the stories I told myself.

The following is a true story about a young woman I worked with a couple of years ago. Denise's story demonstrates the power of story.

Denise came to see me shortly after her fiancé had been killed in a motor vehicle accident. The driver of the other vehicle was legally impaired at the time of the accident and found to be completely at fault. The death of her fiancé occurred just weeks prior to her wedding day.

Denise was understandably angry, resentful and sad. During the first 45 minutes of her time with me she expressed an intense out pouring of emotions. She talked with anger. She shared her sadness and grief. She was immersed in fear. And she even talked of revenge. Eventually Denise released the deep well of emotions that had built up inside of her and she moved into a moment of silence.

I interrupted the silence with a question. "Denise," I asked her, "If we could speak to your fiancé wherever he is and were to ask him what he would wish for you now, what do you think his answer would be?"

After a moment of reflection a smile came to Denise's face. "I know what Gary would wish for." she responded. "Gary would want me to be happy. He would want me to reclaim my joy and to get on with living it fully."

"I think you're right." I replied. "I suspect Gary would wish with all his heart that you not stay in anger or fear or resentment, but rather that you embraced peace and joy; that you continued to live the happiness that the two of you shared."

I then added a suggestion for her consideration. "Denise, I wonder if a way to honour your fiancé would be to wake each day and fill your heart with peace and joy and to live this way as a means of honouring Gary." I could see that Denise embraced my suggestion. Her face filled with joy as she grinned from ear to ear. "I'll do that she said." There was little more for me to say. I gave her a hug and off she went.

One month later Denise returned. "I'm doing really well." she declared. "Every day when I wake up I consciously hold Gary in my heart and I make a commitment to living the day peacefully and joyfully just as Gary would wish for me."

"My problem," she continued, "is that my parents and Gary's parents don't understand my joy. They think I must not have loved Gary. They think that the more you love someone, the more angry and sad you should be. I've asked them to come see you Ted, but they don't want to let go of their story that if you love someone you must be angry and sad."

I acknowledged Denise's challenge. I have seen it many times before. Many of us have been socialized to tell ourselves stories that undermine our ability to live in peace and joy. And so we live a life filled with anger, fear and resentment, not knowing that the solution is within us.

We are wise to acknowledge and consider the kind of stories we tell ourselves. Mastering our stories is the key to our happiness. The power of storytelling was so clearly understood by the Hopi that they declared - "He who tells the stories rules the world." You can rule your world, but only if you master the power of storytelling.

In peace,
Ted


My Best Caregiving Tip

After twenty-five years of intensive caregiving, the most important thing I've learned is that giving good care over time requires a team.  Trying to manage alone and without the help of others inevitably leads to exhaustion, depression, ill healt...

Making Friends With Solitude

I used to hate being alone.  I remember as a teenager, aching for the phone to ring, rifling through my closet for something 'cool' to wear, wandering the halls of my university residence listening for signs of music and laughter.  I was rest...

No Saints Around Here (Book Review): Do I Hate It or Do I Love It?

About 20 pages into Susan Allen Toth's caregiving memoir, "No Saints Around Here", I decided I didn't like the author.  Not one bit.  "How can a wife sigh loudly in front of her Parkinson's disease-suffering husband just because she can't have a second cup of tea in the morning?!" I fumed.  I kept picking up this book, reading a little, getting annoyed and then slamming it down.



This book really got under my skin.  So one day and about a third of the way through the book, I was helping my dear friend and caregiving mentor Kathleen Jordan pack her cupboards for a move into a smaller apartment.  Kath has spent her lifetime giving care to those she loves - she's the mother of three children, one with cerebral palsy complicated by mental illness, epilepsy and a visual impairment. Kathleen also looked after her mother until she died and more recently, her husband Bill.  Bill suffers from a myriad of serious ailments and is now palliative in a care home.

As I loaded jars and dishes into a box, I railed against "No Saints Around Here" and it's author.  Kathleen put her hand on my shoulder and said, "so you are comparing the way the author feels to what you felt looking after Nicholas, your child.  But Donna, it's so different caring for a spouse.  In a way, it's much harder, especially when you're older."  I looked at Kathleen, my teacher, and later went home to read again and consider my prejudices.

The thing is, at first I thought "No Saints Around Here" was shaping up to be a glib tale of care given, but with resentment and cynicism.  What I didn't understand was that I was reading the words of a woman/wife/companion who was livid at her loss and flailing with incompetence in the face of the Parkinson's that attacked her life and her love in some new horrible way every day.

No, this was a woman who loved her husband James - achingly, desperately, quietly, sadly loved him.  Nearly half-way through the book, the author describes visiting prospective nursing homes with her beloved.  It's almost too painful to read.  No nursing homes are anywhere near worth considering, so life goes on at home.   As James' condition worsens and crises loom on a near-daily basis, Toth writes about a friend's wisdom this way:


     "A devoted Zen disciple, Mimi told me, "My biggest test is when I'm cleaning a toilet.  I turn the task into a meditation.  I pay attention to my work, every gesture, every moment."
     I wish for a touch of Mimi in the morning.  Rather an savor the moment, I often feel as though time has alarmingly telescoped.  I have just finished clearing up after breakfast and now I need to get James into his pyjamas.  Where did the day go?  How did I disappear?  Why am I on this frozen tundra?"

One fascinating tell-tale sign of the journey of the caregiver's heartbreak is the shift in possessive pronouns when the author talks about her home helpers.  At first, she talks about 'our aide', but then I notice she uses "my aide" and finally, "James' aide." As James' disease progresses, Toth reveals her loneliness by becoming subsumed by her beloved's needs and losing the 'our' and 'my' in her language.  Only 'he' remains.

But the reader of "No Saints Around Here" will not have to read subtle signs of the caregiver's emotions - the author tells us everything.  This is a diary, after all.  Toth writes poignantly about the helplessness that every caregiver feels one day or another:

"I feel as though I am about to fall off my balance beam.  I picture every caregiver on one, usually performing with an outward calm, like a confident acrobat, but concealing an inner terror: "What in the world will I do now?"  For many of us, this must require both courage and faith, because I am often dizzy and close to gasping as I edge my way forward.  The balance beam hangs in an enveloping haze."

Yes, Susan Allen Toth, we all DO feel as you did.  In 2012, our family had recently moved from our home in the UK back to Ottawa, Canada.  This is what I wroteDuring the past few months, I described to a friend how I felt about the onslaught of change in my life - “it’s as if someone has removed all the floorboards from my house”, I said. “It’s like I am walking on just the narrow joists and I worry about falling”.

Susan Toth was lucky to have good friends who were kind and generous in sharing their own experience of nursing spouses through Parkinson's. Perhaps Toth's friend Dorothy summed up the truth about caregiving best: "You know, you do what has to be done.  And isn't that maybe the base line?  What it all comes down to?  You love someone, so you do what has to be done."

I changed my mind about this book.  I don't hate it, I love it.  Tonight at dinner, I told my husband that if he ever needed care, I would get out Susan Allen Toth's book as a reference because, I said smiling, "There are No Saints Around Here!"

Enabling Meaning and Purpose in the Lives of Our Loved Ones

How can we help our loved ones experience meaning and purpose in their lives?  Does having a disability, getting older, or losing cognitive skills automatically exclude the possibility of purpose in life?


In my family, meaningful contribution is central to happiness.  I believe it is for most people.   Our son Nicholas is 25 and mostly bed-ridden due to severe cerebral palsy.  He is non-speaking, but nevertheless communicates effectively with the combination of a few words, tongue clicks, hand gestures and in a pinch, a switch activated computer system (it’s slow and labor intensive).


Since Nick finished school, we’ve searched for how he might find a meaningful job.  He’s tried selling on E-Bay (he still does that from time to time) and he writes a sportsblog (which he enjoys).  But his recent foray into creating and managing sports betting pools is the magic bullet for meaning and purpose in Nick’s life, currently.  The sports addicted members of our family and best friends all participate in annual NHL (ice hockey) pools and currently, in a world cup soccer one as well.   Nick is the ‘commissioner’ and his role comes with weighty responsibilities.   Prior to the season or tournament, Nick convenes all the participants for ‘the player draft’ in his room.  Pizza and beer are served and participants who live out of town join in via Skype.  Lots of trash talking ensues as everyone picks their players and creates their own fantasy team.  Nick decides how points will be awarded and over the course of the season, he sorts out problems, answers questions and at season’s end, grudgingly awards the grand prize to the winner.   The betting pool is a source of purpose for Nicholas, but it has the added benefit of keeping friends and family socially engaged with Nick in a purposeful way.  The guys in the pool all want to win!


My Mom craves meaning and purpose in her life too.  A couple of weeks ago, she threw me a curve ball when she remarked, “I’ve got it in my craw that I want to get a job.”  This, from a feisty, but tired 92-year old who rarely has the energy to dress up in anything but a fancy nightgown most days.  My sister and I put on our thinking caps.  Knitting for premature babies perhaps?  Then, I happened to see an article online about a seniors’ home in Chicago that paired up with an English language school in Sao Paolo, Brazil to have weekly English conversation practice sessions via skype.  Watch the video – it’s so deeply heart-warming.  


This is meaning and purpose without leaving home or getting dressed up.  So, I showed the program to the manager of Mom’s home and I hope someone will run with it there.  But as a Plan B, I’m looking for a trusted person in my network, too, who seeks conversational English practice with a native speaker who has plenty of time and a good sense of humor. 



Meaning in someone’s life can be a highly individual affair.  People with severe Alzheimer’s or dementia can sometimes find profound purpose in singing to a doll.  The primal memories of nurturing children manifest themselves in cradling a doll or even a pet.  Once we get past judging these activities as being possibly unworthy (on a ‘normal’ scale) or even creepily unnatural, we can begin to glimpse how life affirming they are.  Put your assumptions about what constitutes a meaningful life aside for a few moments and watch this video. 



Meaning and purpose through contribution is absolutely central to everyone's happiness and wellbeing.  Our challenge as caregivers is to find a meaningful activity or interest in the life of our loved one, make it accessible and then share it and celebrate it.  Very often, it can mean the difference between happiness and despair. 
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