Wednesday, 25 September 2019


A Guest Post From a Tired Caregiver

With a short break for sleep, my teenaged daughter Lily has screamed, shouted, ranted and thrown household objects for 18 hours straight. She follows me outside and from room to room inside. If I lock a door, she pounds on it and shouts. The only way I can escape her is to make a break for my car, start it at lightning speed and drive away. But she’s not safe to be left for too long, so after a few blissfully silent minutes in my car, I return to the shouting. 
I have followed the instructions of her mental health team. I have phoned the emergency mental health number. They won’t come because she is ‘acting out’. “Phone the police”, they say. I phone the police. They tell me it’s “not really our bag”, but agree to send a car. They phone a few minutes later to say that car has been diverted to another incident. They’ll come, they say, they just don’t know when. Several hours later, we phone the police again. “Sorry”, he says. “Sunday’s a big day for us. Just going off duty but if it gets worse, phone this number.” It gets worse. We phone the number he gave us. Eventually, after several more hours, our kid finally exhausts herself, takes her meds and goes to bed. I totter straight to bed too. We are woken at 11pm by police with flashlights who have finally arrived to do a welfare check only to wake Lily up! Luckily, her meds send her back to sleep.
Today, my teenager has gone to school where no doubt she will NOT scream and shout. I’m holding tight the strategic lines advised by our mental health team. She has no privileges and still no emotional input from me.
This is not new for us. Lily has a little-known chromosomal disorder which causes (amongst many other things) learning disabilities, extremely high anxiety and obsessive/compulsive behaviour. As she struggles to regulate her own emotions and find her own solutions, I have acted for many years as a kind of external hard drive. She logs in to me for solace, to pick through and make sense of her emotions. But I’m burned out now. My health is failing. Despite years of coaching, loving, strategizing, supporting and seeking every possible avenue of help, Lily’s needs continue unabated, relentless.
In the outside world, Lily appears high functioning. To the untrained eye, she does not have distinguishing features like Down Syndrome and for short periods of time, she almost passes for ‘normal’. She is often affectionate and engaging and although her neediness is apparent, her school teachers only see the tip of the iceberg and they remain sympathetic and helpful towards her. I’m so grateful for this – they’re wonderful! But they’re not her external hard drives and all her angst and anxiety and her anger is saved up throughout the day to be downloaded to me. This is Lily’s M.O. She even contains with her grandmother whom she adores and sees every day.
I’ve lost count of the times that people have shared with me that she’s just spoilt. “She only behaves like this with you!” “She’ll be fine!” “All children behave like this.” “You need to look after you.” “Have you tried…(insert treatment of choice: Bach flower remedies, mindfulness, gluten free diet, horse therapy, CBT, ACT, DBT…)?”
It wasn’t until just last week that a Clinical Psychologist told me, for the first time in 16 years, “this is not your fault.” She told me that Lily’s condition is largely a biological accident. That yes, we’re always working on improving situations, but you did not cause this situation. This brought me some relief from exhaustion. But it doesn’t present a place for Lily to go where she can be safe, yet apart from us.
Lily’s IQ is not low enough to admit her to Intellectual Disability Services. She is not (now) violent enough for the police to come. She used to be – but in those days we were still coping and keeping her behaviour to ourselves. Government Child Services have few residences and those are poorly staffed and sometimes unsafe. Our mental health team of Psychiatrist, (occasional) Psychologist and Social Worker do their best with meds but can’t control much beyond that.
So, we exist, but we are largely unseen. Lily struggles with significant disability but is not disabled enough: not for outside services and not for the kind of social support which I now crave. We are copers, my husband and I. We have coped. But over time, coping has come at the expense of our social life, hobbies, my career and our health and wellbeing. The erosion has been so slow and steady that it has taken us a long time to finally look up and see how isolated we are now. But we’re still working, earning, staying washed, clean, lawns mown, nutritious food cooked. I communicate competently with the school, mental health and health services. We’re educated, well spoken, white and straight. We live in a nice part of town. Our neighbours know about Lily – so they don’t call the police even when it sounds like they probably should. It has been said that we’re our own worst enemies.
Yet to behave otherwise would seem a gross injustice to Lily. She is our child. We love her beyond measure. We have done everything in our power to give her the chance to live her best life. We’re still doing everything in our power… but our wattage is dimming. We’re frightened now. We’re getting older, less vigorous. I simply cannot imagine what will happen to Lily when her external hard drive croaks. The living possibilities for people Lily are limited and we are working on setting up a private arrangement. But we need more time, so for now, we push on. More strategies, more coaching. Hoping that eventually she’ll take over some of her own emotional regulation.
This is a caregiver’s story. But I’ve broken the narrative rules. This is not an uplifting, empowering and positive story. Within the organisation that I’ve helped form over the years to inform others living with Lily’s condition, there is a standing joke that I should never be allowed to speak in public lest I frighten the families. The publicly palatable version of disability is that they are our gifts, that they enrich our society and we are grateful for their lives. Our family laughingly calls this the #blessed discourse. And of course, there’s a great deal of truth in this. Lily has changed us – in some ways for the better. Unable to work full-time, I have studied. I have a post-graduate qualification in Psychology!
But I also want the less palatable stories told. I want to hear stories from the ‘grey areas’ where people are not disabled enough or sick enough to attract the care they need. I would love those stories to be heard without judgment and with compassion. Even better, I would like to see those stories translated into changed services for families like ours. Services which acknowledge the needs of caregivers as crucial. Services which, as well as being patient centred, are caregiver centred and which put in practical measures of support before it’s too late.
I hope it’s not too late for us. We’ll see what the next 18 hours bring.

Sue is a native New Zealand mother, grandmother, small business partner and post-graduate student of psychology. When she's not looking after her family and pets, Sue indulges her passions for wine, media and books. 

Wednesday, 4 September 2019

You Have to Read This - A Beautiful Fable for Caregivers

About a year ago, I opened an email message from someone I'd never met called Diane S. who wrote to tell me that this blog was meaningful to her. It was a beautiful letter - one that I still treasure. She told me, "We are parents of a 26 year old who is medically fragile, blind, non-verbal and severely delayed. You know the journey." Now, after many more email exchanges, Diane is a friend and confidante. She is such a talented writer - her gorgeous short essay is included in my new book - co-authored with Dr. Zachary White - The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver. 

Here is another profound reflection from Diane. I know that I have felt like this mermaid many, many times. Have you?


Sometimes, I feel like I am treading water in a deep, distant pool. When I get tired, I notice the endlessness of it; how far I am away from any place of rest. This tends to feed my fatigue. At other times, there are other things in the pool, making it less hospitable.
There are things I need to get around, avoid, accommodate; or the water is choppy, cold and murky. My breathing gets harder, water slaps in to my mouth, my legs and arms are both heavy and numb.  
The worst days, though, are the ones where I am clearly struggling, but simply too far out for anyone to notice. Not so far that I can’t see the people in the shallower end catching all of the life preservers I can no longer reach. I realize, at that moment, that they have the energy, the wherewithal, the perspective to get what they need. They are still in the eyesight and earshot of support, and they readily accept it. Even those that occasionally get plunked in our depths, are quickly sighted and targeted for relief.
I do not begrudge their position, no less their temporary place there, but I do wish for it. I understand that people offer their best efforts when they can identify with the need in some way. People can relate to illness, to death even, when they can see themselves or someone they love possibly being there; but they do not relate to the still waters of the deep. The place where the chronic state of fragility makes you all but invisible. Luke, unseen by most, because they cannot imagine his experience in any way. Thus, they cannot imagine our experience relative to him. They don’t see the struggle because we have struggled harder to be a positive reflection of his spirit.
In the great depth of this experience, there is tenderness, grace, purity and profound compassion. Fatigue, insatiable and relentless, is capable of overcoming the lightest of hearts. It is then, not easy to watch the other end of the pool, oblivious to its fellow inhabitants.
I pretend that I am a mermaid. I give up my manic treading, dive deep in to the peace and breathe.

Sunday, 25 August 2019

When a Real Grade 6 Class Moves Into A Nursing Home

I've blogged before about the Eden Alternative approach to eldercare. I've blogged before about the benefits of benefits of bringing children into long-term care homes. But I've never blogged about an elementary class of students moving into an Eden Alternative seniors' home!

This morning I hopped in the car with Daisy, our golden retriever. We were headed for a lovely walking trail nearby our home. Out of habit, I turned on the radio and tuned into CBC. A summer rerun of The Sunday Edition was playing and luckily for me, it was an inspiring episode about a unique model of learning and eldercare.

When I find myself wondering about how to create a society in which everyone gives and receives care naturally, I think of stories like this. These children aren't 'heroes' or 'saints' for learning alongside elders - they just get on with living and learning together. These children will grow up to be natural caregivers.

From the CBC Sunday Edition website page, read on!
Originally published on September 23, 2018.
Old people living out their days in nursing homes and young people soaking up lessons in elementary schools live in separate universes — Canada's generational silos.
But at the Sherbrooke Community Centre, it's a different story.
The Saskatoon nursing home houses 263 high-needs residents. It's also the site of an intergenerational school.
Elder Jeff Siemens and IGen students Jace Hein and Athan Swales on one of Sherbrooke's indoor streets.(David Gutnick/CBC)

Intergenerational school

Every year, after winning a city-wide lottery, a batch of sixth graders ditch the traditional classroom and spend a year attending school at Sherbrooke. It is the only classroom of its kind in Canada.
After 18 years of teaching in a "regular" elementary school, Keri Albert, the program's founder, felt something was missing.
"I lived in a small town and we had all ages and stages and all different types of people around us all the time," she told The Sunday Edition's documentary producer David Gutnick at the end of the last school year.
The Grade 6 IGen students in the playground with founder Keri Albert (in purple on the right) and teacher Callie Spafford in the green shirt. (David Gutnick/CBC)
She remembers being particularly affected by her relationships with older people.
So in 2013, she went to the Saskatoon Board of Education with a proposal to co-mingle the generations.
The following year, iGen was born.  
Her plan: students would complete their provincial curriculum requirements within the confines of the nursing home. They would be constantly on the move — sometimes all together for math, science and reading, sometimes working one-on-one with Keri, sometimes meeting with the elders.
At Sherbrooke, there are no classrooms, no desks, and no blackboards. Students get together with their teachers in the chapel in the morning and again at noon, but the rest of the time they are free to go where they want, and sit with anyone they feel like talking to.
Elder Dr. Jodi Grant speaks at the IGen Graduation with students Shova Akter and Faith Luu. (David Gutnick/CBC)
We're talking about their character development.- Keri Albert
The program is now in its fourth year.
Albert says she's often asked, "How do you do this?"
The secret, she says, is combining lessons.
For example, one recent project had students build entire solar systems and present them to the elders.
"[The students] not only did their research and built the model, but they also got to practise their presentation skills," Callie Spafford, a co-teacher in the iGen program explained.
The purpose of the program isn't just academics, Albert stressed.
"We're talking about their character development, we're talking about goals and plans that they have for themselves in terms of their generosity, in terms of their mastery, in terms of their independence, and in terms of being a part of a community which is belonging," she said.
Helena McKenzie Blenkinsop and Elizabeth Grunau greet the guests attending their iGen graduation. (David Gutnick/CBC)

'It's all just part of the human experience'

"There are things in this environment that you do not see in a school. Because this is an adult world."
Death, for example, is a common occurrence.
"It was so emotional," said iGen student Brooke, describing how she felt after her friend Vicky, a veteran, died.
"When he passed away, we were pretty sad."
"If an elder passes away they are not going to hide us from that. They are going to let us know, and we have to learn about grief and stuff, so we have to learn how to cope," she said.
Albert said dealing with grief in this matter-of-fact way is a valuable life lesson.
"We grow confident. We grow used to and normalized around differences, and we realize it's all just part of the human experience. And at the end of it we're okay," she explained.
Student Adam Brookman and Elder Herb Nolan in front of the Tumbleweed Gift and Thrift Shop at Sherbrooke. (David Gutnick/CBC)
Without the kids, I just feel that a part of me dies.- Dr. Jodi Grant
The school is a life-changing experience for the elders as much as it is for the kids.
Dr. Jodi Grant used to teach literacy and children's literature. For her, the students help stave off loneliness.
"If we didn't see the kids, we would just be a bunch of old people in this building, and that is stark and it's ugly. Without the kids, I just feel that a part of me dies," she said.
"I have the wonderful fortune to be down here with the kids and I am able to read to them and it brings me the greatest joy."
Click HERE to listen to David Gutnik's documentary, The School of Real Life

Wednesday, 21 August 2019

A Personal Conversation About Caring with Mark Stolow of HUDDOL

Yesterday I had the pleasure and privilege of chatting with my friend and colleague in caregiving, Mark Stolow. Mark is the founder of HUDDOL.COM, a terrific resource for caregivers everywhere.
I really encourage you to join me and Mark there to continue to conversation! Have a listen and let me know your thoughts about your caring life.

If you find that these experiences and ideas resonate, consider ordering my new book The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver (co-authored with Dr. Zachary White of The Unprepared Caregiver).

Friday, 9 August 2019


There’s a huge upheaval that many caregivers experience but 

hardly never talk about. It’s when caregivers leave their own 

families in order to move in with aging parents. Or, they move 

parents into the family home. Often, these decisions to move 

are made quickly as the result of some crisis or other. And then, 

as the dust settles, the monumental changes wrought by 

disrupting family dynamics begin to dawn.


Last year I started caring for my Mom and it has been hard. 

Really hard. I had to quit my job and leave my husband and 

daughter to move in with Mom in Milwaukee—I live in 

Madison. Dad passed five years ago, and he had been Mom’s 

main caregiver since her diagnosis of early-onset Alzheimer’s. 

So after his passing, there was no one else to look after Mom. I 

felt that I had no choice but to come and live here. I know now 

how hard it must have been for my dad. Some nights if Mom is 

calm, I sit looking at our family photos and I just cry. I wish that 

I would have helped Dad more when he was still alive. Mom’s 

needs are slowly becoming more than I can handle. It’s hard for 

her to swallow now, which scares me, and of course she doesn’t 

know who I am. Sometimes she becomes very agitated, and 

that’s the worst.

Mom’s apartment is on the fifth floor of a nice brownstone in 
downtown Milwaukee. There’s a large picture window above the kitchen sink, and one of my pleasures is looking at the sun sparkling on the dew there in the morning. What I want to tell you about is what I see through the window in the evenings. There’s an apartment below us, and I have a view into their kitchen. Not into their kitchen really, but into their sink. I can see a woman’s hands peeling avocados or potatoes there. The thing is, she’s really good at peeling. She’s not very fast, but she is so deliberate and so . . . skillful. Her hands can peel an avocado without breaking the peel—it falls in a spiral into the sink, and then her knife goes whoosh, whoosh, cutting slices to the pit.
A few months ago, I began to wait and watch for those hands. They comforted me. I looked at my own hands. I thought how strange it was that my hands are here, not in my own home, or shuffling papers on my old desk at work. I take a potato, turning it over under the warm water and rubbing it with my thumbs. With the peeler, I begin to slowly remove a single, snaking peel that falls into the sink. I think, I am feeding my mom and myself with this potato. This is right now, and I am preparing food without which we will not live. Since that night, peeling vegetables has become a form of prayer for me—a prayer to be okay with being in the present with my mom.

Last week I asked readers on my facebook page, The Caregivers Living Room, to tell me about their experience of moving home to accommodate care needs. Here are some replies:

Becky L wrote, “I moved Mom in with us, but I placed her home in a trust so she could sit in her old world from time to time. My son and his young family live in Mom’s home now so when she visits, the little ones make her life a joy! But she sleeps with me at our home because of seizures and falling. None of it has been easy, though.”

Brian J wrote: “When I was little, my grandparents moved into a trailer in the back yard to take care of me and my baby sister. It was a good arrangement for all concerned – my folks got free childcare, the grandparents got extra sets of eyes nearby to make sure everything was fine for them.”

Tracy A wrote: “My Mom refused to move in with us, so my husband and I moved in with her. I never imagined that I would be living in the house where I grew up. It’s 50 miles away from our own house and Mom’s place only has one bathroom. But we made it work. My Mom has done so much for my grown children and myself. This is how I will repay her love.”

Cheryl K wrote: “I moved in with my parents in 2009. Two years ago, my Mom and I bought a house together and moved up to the north Georgia mountains. My Mom was 85 and had lived in central Florida since 1968, in the same house for 40 years. I figured I’d have to wait until after she died, but one day, she just said, “Let’s go!”  We’re in a small town with a community hospital, but our county will Life Flight us out for free if we need advanced, emergency care. And that was the final hurdle for me. No regrets.”

Chris K wrote: “I left the big city with modern conveniences to move into my Mom’s house in a very small and unfriendly depressed, poor farming town with no jobs, no friends, nothing to do and now no major hospital within an hour from us. I’ve been here almost seven years and I’m really stuggling with depression, loneliness and anxiety from helping her with dementia issues. And no help from 3 siblings, only criticism over what I’m NOT doing and that I’m spending their inheritances! God help me!”

Dawn S wrote: “We sold our house and their house to buy a new one that worked for everyone (my parents, my husband, me and our three kids). I’ll be honest, we lost a lot of square footage for our family of five even though the house overall is bigger than our old home. Nine months later, my Mom died. My Dad is almost 93 and is still living with us.”

Jan T wrote: “For the first two years, my Mom lived with us and we moved with her into a bigger house at her request. My own house is still there, but it is musty and neglected.”

Please leave a comment if your family life has been upended by moving in order to give care.