Friday, 21 September 2018

I Thought I Would Be OK, But I'm Not

My Mom passed away on August 16th at the age of 96. Ninety-six is a big number and a lot of years to live. When Mom reminisced about skiing down her street in Montreal as a child, I observed that her memory was 87 years old.

Of course I had imagined Mom dying. I thought I wouldn't feel sad - I thought I would smile and think, "well, she had a great run." And she did.

I wasn't expecting to be deeply shocked by the loss of her in my life. I wasn't expecting a strong sensation of being unmoored, adrift and alone. I wasn't expecting a lot of old demons about my childhood to rear their ugly heads. I thought I had put all these things to rest and I thought I had control of what my mother means and meant to me. I was wrong.

My mother was a person of extreme opposites. She was very funny and very loving. But she could be willful, impulsive and infuriating too. Now it's my job to reconcile those opposites and make peace with her, finally.

I said to a friend recently that I feel like my Mom, my Dad and the events of my life were like files in boxes, stacked neatly on shelves in my mind. When Mom died, all the boxes flew off the shelves, scattering papers everywhere on the floor. Now I must pick up all the papers, look at them again and put them away, perhaps in a different order. But those boxes must be re-stacked because one cannot live amidst chaos. I sure can't.

My sister Karen and I are both working on it. I'm feeling my own mortality and I'm realizing that my mother will always be alive in me. I have her genes, but I have her voice in my head, too. In a way, she'll never leave me.


Friday, 14 September 2018

EMPOWERING ABILITY - We Are ALL Caregivers!

Recently, I had the pleasure of speaking with sibling caregiver, activist and blogger Eric Goll. Here's my interview on EMPOWERING ABILITY - We are ALL Caregivers. Thank you, Eric!



Eric writes: In Episode #050, I had the pleasure of interviewing Donna Thomson and we dove into the topic of caregiving. Donna is an author and speaker on issues relating to family caregiving, disability and aging. She is a patient and family advisor on health research and policy. Donna teaches family caregivers how to advocate for care in hospital and in the community.


If you find this read interesting you can listen to the conversation in its entirety by clicking play on the player below or searching ‘Empowering Ability’ on your podcast player, such as, Apple Podcasts, Spotify, Google Play.


Before my interview with Donna I took the opportunity to read Donna’s first book, ‘The 4 Walls of my Freedom’, which really helped me to gain perspective on what it is be like to be a mother with a child that has medical needs. It gave me perspective on what it must have been like for my own mother, when faced with the medical challenges my sister experienced at a young age. Quoting Donna from her book, “Mothering a child with medical needs is a very public, but lonely endeavor.”


On the podcast I ask Donna, “Can you share your experience so that others listening can also understand your perspective? And, so other mothers maybe don’t feel so alone?


Paraphrasing from the podcast Donna shares, “My son, [Nicholas], has CP [cerebral palsy] and a complex disability. At 4 months [old] he was diagnosed, and it was like he became the property of health care and social care systems. We began to be assessed and I felt as though I was under a microscope. [I was] Grateful for the assistance because you feel like it is the key to the future success of your child, and you want to present as a competent parent. Then you learn when you present as a competent parent that’s reason for people to abandon you. If you seem to be doing well then people aren’t going to help you. In order to access the help you need at home you have to demonstrate failure as a parent. What do these assessments and scores about my baby say about me? Am I a success or failure as a parent? All of this brought the bond between my son and I closer and we would have very intimate moments when alone at home.”

I ask, “Do you feel that this pushed you into being a victim?”

In summary Donna replied, “Not exactly. We had to demonstrate to the system what our needs where, and to do that they had to show them that they were struggling.”


Finding Pleasure in Peeling the Potatoes:

In a previous conversation with Donna it came up that she had to find pleasure in peeling the potatoes and this connects directly to her book title ‘The Four Walls of My Freedom.’ On the podcast, I ask Donna, “Why do we need to find pleasure in peeling the potatoes? And, how do we do that?”

Paraphrasing from the podcast Donna shares, “I can’t leave my house, so how can I make a rich life of this? Watching the lady peeling the avocados next door through the window, [I admired] the way she was able to peel the avocado without breaking the skin was beautiful. I started thinking I can do that. Then I started thinking about how well I am peeling vegetables. It was sensual, secondly, I was feeding my children. I linked what I was doing with the purpose of what I was doing.  

I started thinking about the tiniest things that I was doing as forms of meditation, and it made me happy. I wasn’t doing anything differently, I was simply looking at myself doing the jobs of feeding the kids, doing the laundry, and making the bed.

Locating the extraordinary in the ordinary. We have the benefit of the slow movement lived loud in our families. We do things more slowly, we are more contemplative, we do things more purposefully. There is opportunity in finding meaning and joy in the way we live.”


Everyone is a Caregiver.

Donna shares, “The word caregiver applies to everybody. At the end of the day we are talking about dependency needs met by someone else. A pet, a friend, we all look after each other even when we are perfectly healthy in the prime of our lives. You are not feeling good I will bring you over some soup. We don’t have anything in our society to say that caring for someone is okay. The pendulum has swung so far away from providing care [being accepted in our society].

In my first conversation with Donna, she helped me to realize that I am a caregiver. When I was honest with myself it was the truth, and it felt weird. My ego didn’t want to accept this language because of the societal stigmas that are attached to caregiving. At first, it made me feel weak. Upon reflection, and acceptance that I am a caregiver there is a strength that comes with being a caregiver. Caregiving is one of the most connected and real human experiences that we can have, it has been wired into our biology as we have evolved as an advanced species. As Donna shares, “Everyone is a caregiver.” 

So I ask you, how are you a caregiver? I invite you to celebrate that you are a caregiver, and not to fight it or deny it. What are the benefits that caregiving brings into your life?


Donna's Life as an Activist:

Paraphrasing from the podcast Donna Shares, “My idea was do to a post mortem on our family experience and the support that we received, or did not receive, and to determine what was helpful and what was not helpful. I thought this would be useful for other families and policy makers. I became involved in inclusion. I became active in the family movement, and I became involved with the Ottawa affiliate for PLAN, which is all about citizenship.

I became aware of and met Indian economist, Amartya Sen, who developed ‘The Capability Approach’. The Capability Approach looks at how people can be supported by the community and the State so that they can have a life that they value. It is about individual choice and being supported to have a life that you value within circumstances of adversity. Sen was looking at extreme poverty in India, but I used this approach to look at my family.”


Donna used this approach in her book 'The 4 Walls of my Freedom’  looking at how people can make personal choices, express their personal values, and live in the community to do this. Donna and I further discuss inclusion, and I recommend you listen to this episode to hear these perspectives.


Donna's New Book:

Donna shares, “I’m co-writing a new book with Dr. Zachary White, a professor at Queens University in Charlotte, North Carolina. Dr. Zachary White is writing about Caregiver identity and how it is so difficult to express the transformations that happen when giving high levels of care to someone. Lots of things grow and lots of things die when you become immersed in giving care to someone. Giving people language to create the narrative to understand your life in the now.

My part of the book is the what’s next. What can you do to be an advocate and take action; personal support networks, what are the assets in your community [asset based community development], and online tools including support groups. These are actions you can take to thrive in situations of adversity. It will be titled something like ‘Transformations in Caregiving’ ”.



I thank Donna for coming on the podcast and sharing her deeply personal experiences, and her insights on caregiving. Thank you for doing the work you do Donna!



*You can listen to the podcast by clicking below.*




Monday, 3 September 2018

TWENTY-ONE WAYS FRIENDS AND FAMILY CAN HELP CAREGIVERS


I shared this image on the Caregivers' Living Room Facebook Page this morning and it got me thinking of all the ways that friends and family members can help caregiving families. Here's my list (I originally had 20 ideas, but then I remembered Pet Care, so I had to make it 21!) Do you have other ideas? Please share! And share this post with your networks to give others some ideas of how to help your family.

1) Bring a Meal. And if friends and family members want to coordinate their help, suggest the website TAKE THEM A MEAL. It makes coordinating meal contributions quick and easy. This is a godsend anytime, but especially during crisis periods.

2) Do Some Laundry. Caregiving families have TONS of laundry. Our loved ones frequently need sheets and clothing changed and we often use bibs, cloths and any number of cleaning linens. For most caregivers, it's a minimum of 2-3 laundry loads every day.

3) Visit Just to Hang Out. Sometimes what we need most is an adult conversation with an old friend, or another caregiver who understands. Caregiving is an isolating experience and having company for conversation is an energizing break.

4) Sit With Your Loved One. This is one of the greatest gifts that friends and family can offer to caregivers. Whether we take an opportunity for a much-needed nap, or we go grocery shopping, someone to sit with a loved one is a break. And it's potent, because it gives our loved ones a break from US.

5) Help With Grocery Shopping. Everyone shops for food. It's not difficult for a friend to add your family's list and deliver the order as a kind gesture, especially if you are homebound. "Would you mind picking a few things up for me when you do your own shopping?" is the question to ask if no one offers on their own.

6) Bring a Loved One to An Appointment. Most people with chronic conditions have many, many medical appointments. Whether it's a routine trip to the dentist or a check-in with a specialist, appointments are exhausting for both patient and caregiver. Bringing a loved one to an appointment is a real gift to caregivers, especially when a friend or family member takes detailed notes so the caregiver has a record.

7) Offer a Real Break. Someone who is a close friend or family member and who is a partner in care can offer a real break. This might be an offer of moving in with a loved for a weekend or a week. It could mean taking a loved one on holiday. Or, it could mean offering a whole day of care from morning till night.

8) Help With Financial Matters. Bill paying, banking, and taxes are all time consuming and often left on the back burner by caregivers who are on the front lines of urgent care 24/7 at home. Someone very close and trusted can offer to lift that worry and responsibility from a caregiver's shoulders.

9) Research. Some friends or family members may not feel confident about offering hands on care. But they may have a talent for research. If so, they can gather information about medications and their side effects, new research in a particular disease or diagnosis, opportunities for respite and adapted recreation in the community or funding for equipment and home health care.

10) Lawn Care. Younger friends and family members might wonder how they can help. Children and teens can cut the grass, trim the hedge and weed the garden. A whole family can arrive to plant flowers in the spring and do a fall yard cleanup.

11) Snow Removal. Snow is the enemy of caregiving families. If it's not cleared, cars and wheelchairs cannot leave the house. Caregivers' backs are already sore from lifting, so shovelling snow is frequently not an option. Often caregivers cannot not leave their loved one alone indoors anyway. If friends and family cannot shovel themselves, they could pitch in to pay for a snow clearing contract or they could create a GoFundMe campaign to pay for one.

12) Helping With Medical Records. Being organized with medical records, creating a handy one page medical history (for the ER and professionals new to the case) and keeping a diary of symptoms are all tools that make caregiving less stressful. A friend or family member who is skilled in information gathering and organization can help with these tasks.

13) Helping With Computer Literacy. Whether it's a caregiver or a loved one who is not used to communicating online, help with navigating the internet is a gift that younger friends or family members can offer.

14) House Cleaning. Caring for someone at home creates dirt and mess. In the case of a medically fragile loved one, a very clean environment is required and that's hard to achieve when just one person is also performing all the care. Light cleaning once a week and a deep clean monthly is a great gift for caregivers. Friends and family members can pitch in for a paid contract with a cleaning company, or they can offer to help themselves.

15) Fix-It Help. Maybe there is a friend or family member who loves browsing hardware stores and takes pride in completing odd jobs around the house. If so, that fix-it angel could offer a day to review everything that's broken in the caregiver home and offer to repair it.

16) Massage. If someone who has offered to help (or even if they haven't offered...yet) is skilled at massage, ask them to come for a spa day with you and and your loved one. Massage has been shown to have beneficial, calming effects on everyone, even people with Alzheimer's or dementia.

17) Help With Adaptive Equipment. Fall prevention and mobility safety at home is a huge concern for caregiving families. Whether it's arranging for an occupational therapist to make a home visit or it's making your own DIY grab bars, friends and family members can help out.

18) Help When Your Loved One is Hospitalised. Things really fall apart when a loved one is acutely ill. Visiting in the hospital to bring cups of tea, share lunch or do errands are all welcome gifts from friends and family members during a crisis.

19) Moving Out of Home Due to Placement. If a loved one moves from home into a placement in a higher level of care, there is much work to be done. A loved one will need lots of company and reassurance, but often physical moving needs to happen too. A lifetime of personal possessions might need boxing up. Perhaps a house must be sold. All hands must be on deck for those big transitions.

20) Pet Care. Being a caregiver doesn't mean you don't have pets. Dogs need walking. Cats need feeding. Pets need veterinary care. An animal lover in your network could offer to coordinate pet care. This is especially crucial in times of medical crises with your loved one.

21) Anything Help. If someone in your life says, "I can't commit to anything regular and I don't really have any particular skills", they ask that person to be your 'anything helper'. An on-call, responsible friend could offer to deal with the odd and unpredictable tasks that pop up unexpectedly. This person doesn't have to solve problems him/herself, they just have to find someone who can.

Thursday, 30 August 2018

The Last Two Weeks. Where To Begin?

I was up at our cottage with my husband on the morning of August 16th when the phone rang. It was my sister. "Mom died!" She was crying and then I was too. I thought it was a mistake. Or a joke. My mother is (was) 96, but she wasn't the sort of person to die, she just wasn't. I'd called her the day before and laughed because she told me about her plan to compose 'an original song' for Nick's 30th birthday party this past Saturday. And her plan included a performance, never mind the fact that she couldn't hold a tune. 

We celebrated Nicholas' 30th birthday on Saturday, August 25th at our local Liverpool Football Club Supporter's pub (Nick has been a diehard fan since high school). It was a great celebration made even more delicious by the fact that Nick has survived all these years despite gloomy predictions by doctors AND Liverpool won their match against Brighton 1-0. 



The following Monday, August 27th, our family said goodbye to my mother, Marjorie Carol Thomson Higginson (nee McKeown).  


We even included a display of some of Mom's favourite 'bad' habits.


Everyone who spoke at Mom's funeral had something different to say - we all had unique and wonderful relationships with her. These were my words. 


My mother was a true original. She wasn’t like other kids’ Moms.  When I was in kindergarten, I walked to school - alone.  All my little friends were dropped off by their parents, but Mom just woke me up, left a bowl of cereal at the end of my bed (who doesn't love breakfast in bed?) and after we both got dressed, she left for work and we parted ways at the front door.  Mom was the only woman in our neighborhood who was employed outside the home.  She had no interest whatsoever in cooking ("Here, eat this peanut butter sandwich so you won't be hungry anymore").  My Mom was the original independent, hard-nosed, who-cares-what-the-neighbors-think feminist.

Mom's moral compass was embedded in her DNA - she didn't learn right from wrong at university - she never went.  After the depression, only her brothers had that privilege.  But Mom always had a job; usually as a secretary at our school.  She always took jobs that allowed her to have her own car and to be home with us during holidays.

Growing up, I watched with a mixture of fascination, mortification and eventually pride as Mom would become exorcised over some perceived unfairness that my sister or I suffered at school.  On my first day of grade one, it was a hot and humid day. After school, I let it slip to my parents how during class, I had put up my hand to ask for a drink of water. The teacher said no, that I could wait till recess. Mom was the secretary at my school and she was livid. She made sure that my first day at that school was also my last. The principal (who also happened to be the parish priest) came knocking on our door at home and pleaded with Mom to put me back into his school.  He might as well have been talking to a post.

Once, I remember that my Dad made the mistake of telling Mom (who was dressed in her pyjamas at the time) not to have her morning coffee and cigarette on our front porch.  "I don't want the neighbours to be looking over here", he said.  That was Mom's cue to dance around a birch seedling in our front lawn, may-pole style.   My sister and I screeched with laughter and Dad just shook his head.

Mom loved us and she doted on her grandchildren. When Nick and Natalie were small, Mom knew I was exhausted, so she invited us on a holiday to her rental property in Florida.   Even though Natalie was only three, Mom 'taught' her how to play tennis, letting me sleep for the first two days of our holiday.

Then when the children were a little older, Mom came to visit in Ottawa to help out around the house.  One day I arrived home from a therapy appointment with Nicholas to find my mother outside on ladder, cigarette dangling from her lips, washing the windows.  She was well over 70 at the time.  "Mom!  What are you doing?!  Get down from there!", I shouted in alarm.  "Well, the windows aren't going to wash themselves, they're dirty.  And where's your ironing?  I'll do that when I'm finished.  You go lie down. Now."  That was Mom - direct, unapologetic, funny and slightly outrageous.

What did I learn from my mother?  I learned resilience, kindness, loyalty and a passion for justice. Mom, you were one of a kind and I will always love you.



Sunday, 12 August 2018

CAN CARING EVER BE A FORM OF SELF-CARE? MAYBE!

This afternoon I pulled our daughter close in a long embrace as I whispered "goodbye, I love you". Natalie and her partner Alex were with us for a week at the cottage. Watching the sunset from the sofa at the lake, I massaged her feet. I made her favourite spice cake for dessert after a gigantic 'seven layer salad' - a special summer tradition in our family. And our Natalie loves tradition. We cooed over old LPs, my high school yearbooks, tin boxes of buttons collected by my mother in law.... and of course we played cribbage. 


I realized something about myself - I deeply enjoy caring for the people I love. And caring for Natalie, who doesn't really 'need' care is soothing for me. It is a form of self-care for me. There is such delight in offering comfort food, in morning and nighttime hugs and in late afternoon chats about future planning. Caring for someone who doesn't absolutely 'need' care is a form of respite. This past week has given me so much energy and love for whatever is next in my life. Aren't love and care two wonderful things when freely given and gratefully received? And I've been reflecting on the (nuanced) contrasting satisfaction I feel when I'm caring for my Mom or when I used to do full-on care for Nick. Care can be described so differently depending on the person and on the relationship. They say that the indigenous people of the north have 33 different words for snow. Maybe we should have 33 words for caregiving - or at least a different one for each member of our families. 



Care is complicated and simple all at once. Today, the sun is shining and I'll just let my heart be happy and full as I begin to plan the next visit with our daughter. 




Monday, 6 August 2018

Beyond Good Intentions; Towards A Good Life


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An Open Letter to Rachel Adam-Smith and her Social Worker

When did we stop believing that ‘It takes a village to raise a child’? When did asking fellow community members for assistance in special needs parenting (or any parenting) become a potentially harmful act? And why would a social worker believe that a mother asking for the support she needs to keep her daughter safe is a demonstration of irresponsible parenting?

Rachel Adam-Smith is a UK blogger who is also a law student, patient with congenital heart disease, the daughter of a mother who has muscular sclerosis and she is the mother of a 15 year old daughter who has severe disabilities including autism.



Recently, Adam-Smith penned a blog post describing how the social worker assigned to her case did not believe she should seek assistance from strangers when her daughter became physically unmanageable during emotional meltdowns that occurred in public. The social worker maintained that Adam-Smith’s daughter might not understand that talking to strangers is a bad thing. Rachel Adam-Smith is a petite person with a serious heart condition. She is a single mother. She is economically isolated. When Adam-Smith’s daughter has a meltdown, she falls to the ground or tries to run away (including into traffic). She is always with her daughter when she asks others for help.

What are we to make of the idea that seeking emergency assistance from neighbours or community members is innately dangerous? Should we conclude that it’s equally risky to offer help to a vulnerable person who is clearly in distress?

I speak as the mother of a young man with severe disabilities. Cormac Russell is the Managing Director of Nurture Development and a leader in asset-based community development. Here’s what Cormac and I would say to Rachel Adam-Smith and to her social worker:

Dear Rachel Adam-Smith:
You are not alone. In your community, there are many people who want only the best for you and for your daughter. They would like to help you – not only in times of crisis, but as loyal friends and supporters. The next time you ask for assistance from a stranger (and we hope you will continue to do this, because it is the safe and sensible action to take and we believe your instincts and experience will guide your choices), ask if the stranger would like to join you for coffee. Ask if you might drop off a thank you gift at their place of employment. Or ask whether you could write a note of appreciation to their employer praising the stranger’s kindness and character. Look for opportunities to transform the kindness of strangers into authentic friendships. After all, no one knows better than parents of vulnerable children that it is our caring relationships that keep our children safe and secure.

With very best wishes and gratitude for caring members of your community, who extend a hand of help and kindness,
Donna and Cormac


Dear Social Worker:
You are doing your best to help Rachel Adam-Smith and her daughter. You are trying to keep them safe according to all you’ve been taught in your field of study and work. We believe that your advice to Ms. Adam-Smith reveals a problem with the way we think about ‘help’ and ‘safety’ in our society. We would like to propose an alternative way of thinking.

Traditionally, help is thought of as keeping people out of harms way, and safety is understood as preventing bad things happening. This mind-set is so endemic in Western culture that these ways of thinking have become certainties. We no longer question them.

But question them we must. Because when our efforts to keep people safe actually separate them from natural support networks and make them less autonomous and more dependent on salaried strangers, those efforts to help can become counterproductive and harmful.

In other words our efforts to help can produce the opposite of what we intend; they make people more unsafe, not safer.

The question then, is how do we make that shift from risk aversion to liberation? For Social Work as a profession there are four necessary changes in our opinion:

1.     Shift the profession en mass towards Community Social Work and away from Case Management Social Work. Measure success on the basis of how interdependent at the centre of their communities the people who are being served have become, not how dependent on professional support, support that in reality is quite limited. And when that professional support ends, only the community remains (which is why we should focus on strengthening those ties for everyone, especially vulnerable people).
2.     Change what Social Workers are afraid of. We all carry some fear as professionals. So let’s make sure if we are going to live with that stress, we choose the right things to be afraid of. Fearing that I won’t meet my Key Performance Indicators (KPIs) this month. Or fearing the unpredictability that comes with the new relationships with individuals you serve when you work in a community way – these are counter-productive fears. They increase unhealthy stress within practitioners generally, and they stifle and disable those we serve. Useful stress comes with the fear of what might happen if I displace natural indigenous support in order to cover my back or meet my targets. Or if I make people dependent on a system that cannot provide ongoing love and mutuality without the hidden cost of unintended institutionalization and loss of autonomy. These are fears worth having, and they are real.
3.     Include Safety II thinking in how Social Workers are trained to think about and work with safety. Professionals in the field of Airport security are at the cutting edge in thinking about safety. They have identified two main ways that folks think about Safety. Safety I (the dominant way of thinking about safety) aims to stop bad things (things as imagined in the future) from happening. Safety II, aims to optimize the potential of good things happening based on what actually happens in the present and optimizing what’s strong not wrong from there. We need both, but our Social Workers and wider society need exposure to the Safety II mindset if we are to restore balance and common sense.
4.     Finally, we need to ask different questions. Instead of asking what will my intervention prevent, ask ‘what will it produce? What kind of person will be produced as a result of my advice or intervention? Systems could ask: What type of person does this ‘supposed’ productive process/advice, produce?’ We say ‘supposed’, because until we know the answer, we can’t know if its productive, non-productive or counter-productive



When institutions develop processes that degrade the human capacity, inventiveness and autonomy of a person/persons they serve, it is mostly done with good intentions. We must learn to become wary of Good Intentionsbecause as we all intuitively know, the road to a life of disconnection, loneliness and misplaced fear is paved with them, especially for those most vulnerable to not having their gifts recognized or received.

With best wishes and hope for a more community-based future for all,

Cormac and Donna