Tuesday, 22 July 2014

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.

Saturday, 19 July 2014

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

Monday, 14 July 2014

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 health and even family breakdown.  But with a coordinated 'network of support', it is possible to locate the possibility of a 'good life', even with disability or chronic illness in the family.  A support team can be large or small - it can be comprised of both medical professionals, family members and best friends.  But without a tool to coordinate communication, even people with the best of intentions will be frustrated in their efforts to help.

Tyze Personal Networks uses social networking technology to oil the wheels of small, real-world networks of support, which can include paid staff alongside family and friends.  I've long been a huge fan of Tyze and how it can transform the caregiving experience from desperate to doable.  In our family, we use Tyze to coordinate our son Nicholas' care and we have a Tyze site for my Mom, too. 

So, what does Tyze do? Tyze is a FREE online social media platform that is completely private - it even has a vault to securely store sensitive medical documents.  Watch this video to get a closeup look at what Tyze can do!

  The most unique aspect of Tyze is that it bridges formal supports (doctors, therapists) with informal supports (family, close friends).  On our son Nicholas' Tyze site, we organize his schedule of appointments and ensure that they don't conflict with important sports events in his life.  His GP can correspond with his nurses or me about side effects of a new anti-seizure medication.  When Jim and I took a holiday to the Bahamas a few months ago, we checked Tyze every day to for a glimpse into Nick's medical profile as well as his leisure activities.  Last year, Nick posted his Christmas wish-list on Tyze and family or friends 'claimed' gifts to ensure that no duplicate presents were purchased.  We use Tyze as a tool to coordinate medical care, but many other Tyze users employ it to help their vulnerable relative to be more involved in their community, either through social clubs, churches or informal visits.  Therapeutic goals can be monitored, tasks assigned, schedules made and information shared with loved ones and professionals alike.  Tyze is a Godsend for anyone giving or receiving care and that's a fact.

THE FOUR WALLS OF MY FREEDOM: Lessons I've Learned From a Life of Caregiving (House of Anansi Press, 2014) is available everywhere in Canada and will be released on August 12th in the USA.

Thursday, 10 July 2014

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 restless and bored being by myself.

But not anymore.  My searching spirit was quieted by years of solitude caring for my children.  Nicholas is 25 now and Natalie is 22, but for many of their growing up years, I was with Nick in the hospital or I was home waiting for the next crisis.  This forced confinement prompted me to name my book "The Four Walls of My Freedom" because although I was within the four walls of my caregiving duties, I learned to be happy without the company of others.  Once I succumbed to my destiny, I began to look carefully at my garden, my home, my children, my husband and I looked very, very carefully.  Suddenly I saw that contained within the ordinary is the whole world and all the emotions in it.  I reflected on the meaning of peeling a potato, of planting a spring bulb, of bathing my children and of folding warm sheets.

So now, I am sitting at my grandparents' family cottage on our lake in the Quebec Laurentian mountains.  I gaze at the portrait of my Nana - her knowing eyes look proud and comfortable.  She made peace with solitude and caregiving too.  Her son, my father, had three strokes and died young.  Many of her brothers and sisters perished as children in the harsh farming life of Northern Scotland.  When, as a honours student, she was offered a scholarship to attend senior high school in the nearby town of Wick, her parents said "No.  You must stay home and look after your younger brothers and sisters.  You must do your chores here."  Like me, my Nana made peace with her destiny.  She was a happy and strong person - a true survivor.

I delight in the company of others, but I savor being alone too.  Not everyone is able learn how to make friends with solitude, but caregivers often are.  Aren't we lucky!

THE FOUR WALLS OF MY FREEDOM: LESSONS I'VE LEARNED FROM A LIFE OF CAREGIVING by Donna Thomson (The House of Anansi Press, 2014) is available in Canada and will be released in the USA on August 12. 

Monday, 7 July 2014

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!"

Tuesday, 1 July 2014

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. 

Friday, 27 June 2014

Coming to Terms with Disability in My Family, Across Generations

After my Dad passed away in 1975 following his third stroke, I was angry.  Really, really angry.  I would sit in church, look at Christ on the cross and fume, "why does everyone go on and on about YOUR suffering?!  That was NOTHING compared to what my Dad endured!"  All these years later, the anger has waned, but I still haven't come to terms with what happened back then.  My father was too young.  He was from a generation that abhorred dependency, so he suffered great humiliation.  I felt somehow abandoned by 'the rock' of our family, so I floundered personally.  The wounds are scarred over, but they're still there.

Nick's disability is different.  The first of my two gorgeous children, he was born with cerebral palsy in 1988.  In my book, The Four Walls of My Freedom, I wrote about receiving Nick's diagnosis this way:

The white haired doctor stooped to look closely at Nicholas and asked “Has anyone spoken to you about your son’s development?”  “No”, I answered, “He is small because he was a bit premature at 33 weeks.  Someone crashed into the back of my car at 26 weeks and they think that’s why he was born early”.  Only later I learned that “development” meant cerebral palsy or mental retardation.

Three months later, Nicholas was admitted to hospital so that tests could be performed.  The doctor asked me if I would like to hear the results.  I nodded. She closed the ward playroom door for privacy.  We were alone.  She in her lab coat was sitting in a sturdy mother’s wooden rocker.  I was squeezed into a plastic child’s chair.  Around us lay discarded toys and empty chunky bright tables and chairs, all toddler sized. Tears glistened on the doctor’s cheeks as she told me my baby was severely disabled.  “Never be normal” are the words I remember.  I also remember “generalized cerebral atrophy”.  Pea brain, I wondered?  “Oesophageal reflux”, she said, “Nothing to keep food down where it belongs.  Common in cerebral palsy.  Pain similar to heart attack”.   There were blue stripes on her blouse.  I looked down and something red caught my eye.  Blood was oozing from the edge of my thumbnail where I had bitten it. “Well, I’m in the right place”, I thought.
I stood up and felt a lightness, a sense of relief and purpose.  “Now I will be able to feed my child”, I thought. “I will become an expert; I will apply myself to becoming a great mother, and my baby will grow into someone perfectly perfect.”  Passing the desk, I noticed the nurses half turned, whispering, their pitying eyes fixed on us.  I scooped up Nicholas, deposited him into a pram and paraded up and down the hospital halls, back straight, eyes fixed straight ahead. But I was not alright.  I wrote in our baby book: “February 22-25, 1989 Nick admitted to hospital.  Cat scan, PH probe and digestive barium xrays  All abnormal – we trying (sic) to absorb this terrible news.”

I remember hearing a radio news report a long time ago about a terrible road accident in rural England.  A young family – parents and three children - had all perished.  The grandfather’s public response was “I don’t understand – we brought them up so carefully so nothing like this would ever happen”.  I felt like this grandfather - the experience of falling victim to random tragedy and a serious derailment of one’s life plans caused such profound shock and questioning of all I believed was solid and true.
Now Nick is 25 and living a rich, busy and engaged life with full-time care in a home away from ours. To me, his disability is as normal for him as being able-bodied is to me.  That said, his disability did derail all my life plans.  But, you know what?  I'm OK with it - I'm happy with the way my life has turned out.  Perhaps I wouldn't be writing those words if Nick was ill or in pain, but he's not.  Just a disability by itself can't hurt us.
My Mom doesn't have a disability per se, but she is getting wobbly on her feet, she's getting very, very tired and she has trouble mustering up the energy to do things for herself.  When I think of my mother, I think "well, it's natural... all this getting old and needing help.  It's part of nature."  
Dad's disability didn't feel right or natural and neither did Nick's at certain points of his life.  But in my mind, their disabilities are beginning to melt into my Mom's 'natural way' of needing help as she ages into infirmity.  Maybe the cooling embers of my youthful fire of 'unfairness' are due to my own aging.  I'm 59 years old and this morning, I noticed my back is a little sore and my knees quite stiff.  I shrug and pour myself a coffee. 
This blog post was the second in this Summer Blog Challenge - the results will be turned into an e-book.