Bringing a Voice to Residential School Survivors with Dementia

by Nadine Morris Sheryl Harry, Patient Partner | 11 Oct, 2017 | 11 Oct, 2017
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Note: The information and material here may trigger unpleasant feelings or thoughts of past abuse.

If you're experiencing emotional distress and want to talk, call the 24 Hour Residential School Crisis Line at 1-866-925-4419 or the First Nations and Inuit Hope for Wellness Help Line 1-855-242-3310.


My dad, Duncan Harry, was from Ts'kw'ay'laxw First Nation in Pavilion BC.

He was a skilled and proud ironworker—a foreman—who was well-liked and respected by his coworkers and bosses. In 1976, he suffered a workplace injury, falling 20 feet and landing on a concrete slab. Despite his accident, he continued to work until the injuries forced him to stop fourteen years later.

In 2011, Dad was officially diagnosed with dementia.

Ironworker Duncan Harry

Ironworker Duncan Harry just below the original fabric dome of BC Place in Vancouver.

He was first hospitalized in April 2015 because of a badly ulcerated, severely infected leg. His leg was amputated above the knee, one month later. He remained in hospital until mid-November of that same year. On December 2, 2015, he passed away in hospice.

Throughout Dad’s hospital stay, I would stop after work and stay with him until he fell asleep. I quickly found that the dementia caused him to believe that he was back in residential school. My dad had attended both St. Joseph's Residential School in Williams Lake, BC and Kamloops Indian Residential School in Kamloops, BC.

When I'd arrive at the hospital, I often found him shaking, teary and sometimes crying. He would ask me how they let me in. He would tell me that he didn't talk all day because he didn't want to get into trouble. My mom and I did our best to reorient him each day, and to let the care aides, nurses and doctors know that this was what he was experiencing. We had to repeat this “orientation” each time he was moved to a different ward (which was frequently).

Each time Dad was moved, we found it was extremely difficult to convince staff that what they thought was agitation and aggressive behaviour was actually night terrors and a response to his perceived environment – to Dad thinking he was back in residential school. Mom and I asked repeatedly that staff call us to be with Dad anytime (day or night). We both live and work within five minutes of the hospital. This never happened. Instead, staff continued to call security, use restraints and inject him with antipsychotic medications when he became agitated or aggressive. This was not making things better for him. It made it much worse.

I was extremely protective of my dad during his time in hospital, the Tertiary Palliative Care Unit (TPCU) and hospice. Mom and I made sure to assist every time the nurses washed and re-positioned Dad, as it was very frightening for him. The last word he ever said was "No!" when the nurses were washing him.

Sheryl and her Mom comforting Sheryl’s dad

Sheryl and her Mom would comfort her Dad from the time he woke up until the time he went to sleep as they waited in hospital for his surgery.

When my mom and grandma wanted Dad to have the last rites, I was very concerned that having a priest standing by his bed would really scare him. I talked to one of the nurses about the possibility of finding a priest who would come in regular clothing and whisper the last rites while Dad was sleeping. The nurse was very understanding – but unfortunately, he advised that the one priest he was able to reach was unwilling to accommodate our request. Thankfully for Dad and our family, he recommended the Hospice Spiritual Coordinator, who was lovely.

After Dad passed away, I started seeing a grief counsellor. Eventually, I started volunteering and took a hospice volunteer education program. They have put me in touch with one of the nurses from TPCU, who advised that they had begun doing things differently since my dad's time with them. At the time Dad was there, staff were not aware of the effects of residential schools on survivors. I was told that this has since started to change.

I feel great concern about Dad's fellow residential school survivors. Some may have dementia. Some likely experience post-traumatic stress. Some will end up in hospital. I worry that these survivors will experience – or are experiencing – the same things that Dad did. Many survivors would now be around Dad's age when he was diagnosed.

I believe there is an urgent need to educate healthcare workers (as well as survivors and families) about what happens when residential school survivors, post-traumatic stress, dementia and hospitals collide and the most effective ways of helping, communicating with and supporting survivors and families.

I don't believe survivors should be re-traumatized in hospital. Families shouldn't feel they need to be with their loved ones in hospital 24 hours a day to protect them from further trauma. They should be there because they choose to be. Because they are partners in care. Because they are helping to provide patient-centred care.

The elder years are a time that should be respected and honoured. I really did my best to honour Dad’s journey throughout his time in hospital, TPCU and hospice. He loved to help people and I am positive he would really want to help his fellow Residential School Survivors and anyone with post-traumatic stress.

I feel like my Dad and I share the same soul, or the same kind of soul. In my first year of grieving, I was tortured, wondering why he had to suffer so much during his life. I am still trying to understand this, but I think I'm here to do something about his suffering, even though he's across with our ancestors now.

I have signed up to volunteer with the Patient Voices Network. In September of this year, I attended the Better Together Policy Roundtable as one of CFHI’s Patient Advisors. I want to bring a voice to this issue. I hope you will as well. 


18 comments

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  1. 22 Oct, 2017 | Sheryl Harry

    Thank you! I really appreciate everyone who takes the time to read and comment. I hope this is shared and more people thoughtfully and respectfully speak with their family, friends, their communities and health care providers. Everyone needs to be involved, and I think it needs to start sooner. Sooner in the families and sooner in the health care system. I'm not sure when it happens in the school system, but learning about the full life cycle - including dementia/other illnesses and death (and grief) - would help make them less of a shock. Maybe also how to communicate with health care providers, how to research reliable health info on the internet. These could be considered helpful life skills, like how to do your taxes.

    From what I understand, it wasn't long ago that when a loved one fell ill, they were cared for in the home. Family was involved in care all the way through. We all walked them to the ancestors; walked them home. Now that it happens in hospital, care homes and hospice, there is a separation. The whole time my Dad was in hospital/TPCU/hospice, it didn't feel natural or right to leave him to go home.

    Things are different these days, for sure. Look at us. My Dad was born on the reserve in a field (in a little building I think). Now we're in the city. Most of our family is still back home, so there is still that separation.

    A long stretch in the hospital like that was terrifying and traumatic for Dad. I hate to bring up what it was like for me, because I like everything to center around Dad, but I likened it to being cast in outer space. Screaming in to a void. And then how to describe the feeling knowing that I had entered his nightmare, his terror? I remember telling Mom as we were driving one night that I was crying every day. She said she did too. We both had insomnia. Today we both still have major sleep issues.

    Maybe we all have to look at what we're doing and how we're doing it. All of us.

    I saw a good trigger word reminder: "REMEMBER". We need to remember who we're doing it for and why. Our family members have sacrificed so much so that we could be here today trying to make things better for current and future patients. We need to remember them and honour them.

    Have a great evening everyone.

  2. 20 Oct, 2017 | Marlene Brajak
    Thank you so much for sharing your heartfelt experience. I did have the pleasure of meeting your father and it sure was fun and funny. My heart is open. I am sure he and your family are terribly proud for your courage and strength to carry on on this compassionate path. I am very moved!
  3. 19 Oct, 2017 | Sheryl Harry

    Thanks everyone for the very kind comments.

    As you can imagine, we worked with many care aides, nurses and doctors over those months. Many others too. Social Workers, physiotherapists, OT, speech-language, diet/nutrition, radiation, the porters/drivers and the EMT's. There were so many who were incredible, unforgettable. Every one of them, I wish we had their names. Because they did the little things that were actually really big things for us. The care aide who sang to Dad, told stories and asked Dad for his. The nurse who sang to Dad to comfort him his first night in Tertiary Palliative Care Unit. The volunteer who lightly massaged his hand... he fell asleep and it was so nice! Cathy, the lady from Hospitality Network who would stop by to say hi to Dad every day that she worked. She was his most regular visitor other than Mom and me. She always got a laugh out of him until the procedures, pain and progression rendered him unable to respond. But she still came to visit. Nurses and Care Aides said hi to Mom and I every time they saw us in the parking lot or hallway right up until we moved from TPCU over to hospice in mid-Nov. 2015. Even nurses from Emergency remembered us. We found that to be pretty amazing.

    I wanted to become a hospice volunteer a very long time ago. My Aunt (she was a nurse) told me not to do it, she said it would be really hard. So I started doing other things. Donating blood until my iron was crazy low. Volunteering with kids. But one night in hospice, I was sitting next to Dad's bed holding his hand. He always held really tight. Always so strong. Well I heard someone down the hall calling for someone... "Hello? Hello!..." This went on for a while. I felt bad because I wanted to see if I could help him but I also didn't want to leave my Dad. I laid my head on the bedrail and I think I eventually fell asleep there.

    Another day, a hospice volunteer came in to the room. We talked for a long time. It was the greatest thing having someone there who really wanted to genuinely listen to me. He wasn't checking his cell phone or interrupting me with his own stories and comparisons. He let me say what I needed to say. It was a lot. Walking someone home is harder than it sounds. I didn't want to let go of my Dad. I wasn't ready.

    Another thing about the hospice volunteers... they were there when I didn't even notice. I would be sitting with my Dad holding his hand. I'd turn around and there would be a full jug of ice water. Which meant I didn't have to leave my Dad to go get a jug of ice water. A little thing that is actually a big thing. I never wanted to leave him at all.

    The hospice staff remember Dad, after all this time. They remember me. They remember what room we were in. Basically this is all why I decided to finally just sign up to take the hospice volunteer education program. Every interaction was so positive. And after being there for 15 nights, it seemed like home.

    Dad's birthday is tomorrow. He would have been 72 (he turned 70 when he was in hospital) and we would have gone to the casino for dinner and games as usual. Dad would have had either lasagna or fish & chips. He would make funny faces to make us laugh. He'd tickle my neck and I'd tickle his and our fingers would both end up stuck in each other's necks.

    I miss him. I know my real Dad. The funny, silly, thoughtful, generous and sweet. Clever, witty and such a prankster. Super strong, talented, artistic and musical. Ironworker... Builder of buildings, bridges & domes. Loving and so desperately loved. I hope he visits in a dream or two tonight.

    Thanks again everyone. Take care out there, and take care of each other.

  4. 19 Oct, 2017 | Debra Huron

    Your compelling story of bucking up against the system brings me to tears.

    I admire your strength and I applaud your courage in speaking these truths about your experience, and that of your Mom and beloved Dad.  My opinion is that you have the right to tell this story because you lived it, too.

    I have long been dismayed when I see elderly people being treated like children--complete with stuffed toys in their beds and an "accepted" level of disrespect. Your words touch me deeply: "He was being treated like a child. Which is something I heard a lot (one care aide told me "it's like working with a 2yr old" about Dad's roommate). People with dementia are not babies and they are not children. They are still our parents, grandparents, respected and beloved elders who have lived more and accomplished more than we can imagine."

    Your writing has uncovered many important truths. Thank you.

  5. 17 Oct, 2017 | Sheryl Harry

    Thank you so much for taking the time to read my post, and for the kind words.

    I'm not sure I am at a place where I would say that the fates lead Dad to be re-traumatized for 6 & a half months in hospital and that's why I volunteer and decided to speak up about it. A lot of things happened. A lot of things didn't happen. We spoke with Care Aides, Nurses, PCC's, Managers, Doctors & Specialists. Wrote lengthy letters to the Patient Care Quality Office (cc'd to every ward & Dr involved, and our MP). Twice actually, we wrote to them twice. It wasn't good enough. I couldn't be certain that anything was going to improve. So I found Patient Voices Network, and then CFHI.

    I actually do volunteer. I've been a volunteer since 2011/12. I switched to hospice one year after Dad passed away. They are wonderful people to work with. They still remember Dad and the room we stayed in, and that I was there a lot. And now here I am again.

    I lived with Mom and Dad for some time after returning from Lillooet. So I've seen the effects of Residential School. He slept on a hospital bed in the living room. His night terrors woke us up instantly. Because he was loud, scared and it was like he was running or kicking someone away. We couldn't touch him to wake him up or he would swing. That's how bad his night terrors were. We could only yell to wake him up. He always thanked us for waking him up. We'd make sure he was ok before we all went back to sleep.

    I've been feeling the intergenerational effects for many years, I guess. I'll have to do some reading about that. I do hang on to my Mom a lot. I don't like it when she doesn't call or text me back. I miss her already and I just saw her 2 hours ago. :)

  6. 17 Oct, 2017 | Christianne Chiasson
    Your dad was a generous and kind man. I feel blessed to have met and shared time with your parents. Thanks for sharing His-story!
  7. 16 Oct, 2017 | geraldine john

    reading this brings big tears to my eyes ...thinking of all whats been happening and what we go through i so miss duncan ...he was such a beautiful person him and your mom ...we shared many memories with all our friends and family ..i guess when you go through so much tramma from res school and the bad people who were there all those years ...doing bad ,bad and mean things to our children ...is so hurting ,,.i know i went through my life with louie who suffered through his memories of the res school....and tried not show it ...they suffer no more but we have to be strong for us and family ...love you and your mom for being so loving and strong for his remaining daz ...he left this world knowing how loved he was ..hugs to you and your mom ...i know louie left feeling all the love too we sat by his side all the time he was in the hospital too... we tried so hard to keep him with us too but his time was here to go to the other side ..now they all look down at us smiling and proud of you too sheryle oxoxo....

     

  8. 16 Oct, 2017 | Denise Antoine

    I am so sorry that he had to go through this and i am glad you are giving survivors a voice. We take care of my mum and i hope she never has to relive the residential school again.   Your dad was a very nice person.

     

  9. 16 Oct, 2017 | Robin Chapman
    Your dad's story is heartbreaking. I had no idea he was going through all of this turmoil. I'm so glad you have the strength to share it with all of us, and especially with hospital staff.  I have so many good memories of him and your mom, and my sister Pearl, and all the Lillihootans.  These memories are certainly cherished.
  10. 16 Oct, 2017 | Carmen Nelson

    Hi Sheryl, Im so sorry you have gine through this. I miss your dad too, was such a happy man.  Everyones favourite uncle.  Hurts me to think he’s gone through so much as a child, and covered it so well.  

    Im going to share this with my coworkers.  

    Love to you, your mom & brothers.  

  11. 16 Oct, 2017 | Nick Haggar
    Thank you Sheryl for 'getting it straight'....I had no idea,....and as a landed immigrant myself to this country,I had no clue to the history of 'backward' practices that were used on the native people at the time....My thoughts for your dad..RIP.
  12. 15 Oct, 2017 | Rena Joseph

    Hello Sheryl

    I really want to thank you for bringing awareness to individuals living with dementia and ones that suffer from post-traumatic stress due to the Residential School System. I believe that everything in life happens for a reason, sometimes in all that turmoil and anger there is a lesson for everyone. So witnessing first hand how frontline health workers mistreat vulnerable people,  I think your dad would be very proud of you for bringing a voice for the voiceless the ones that can't speak up for themselves. If your dad didn't get re-traumatized by his stay in the hospitals, Hospice and TPCU would you be volunteering and advocating for Residential school Survivors that suffer from Dementia? Through your time shared with your father, you got to see what trauma he experienced and the impacts to the intergenerational survivors. You & your mom were able to comfort him as when he was going through the trauma from residential school he was alone. Thank you gain for bringing awareness and a voice for the voiceless and sitting on this committee maybe making a recommendation that all frontline health workers get educated on Residential School trauma and having it as a regulation or policy.  I lift my hands up to you and your mom. 

  13. 15 Oct, 2017 | Glenda Lavallee

    Hi Sheryl.  I am so proud of you for what you are doing.  I am glad you are sharing your dad's experience and I am so thankful that my experience in the residential school was not as horrific as your dad's.  Keep up the good work and don't hesitate to  educate and share with as many people as possible.  Keep strong and God bless you and your sweet little mom.

     

  14. 15 Oct, 2017 | Sheryl Harry

    Thank you... It is horrific for anyone to have experienced residential schools. And then to re-experience them in their dreams/nightmares, and/or flashbacks. But then to actually re-live it by having dementia transport you there because you're in a hospital for 6.5 months. They were doing him and themselves no favours by calling security instead of calling me or my Mom. And going in to see him after they had injected him... absolutely crushing. It's a traumatic experience.

    I was told that I should be able to count on the primary care staff to look after him while I was at work, but it was impossible. There was an instance where he was scolded by an LPN right in front of me. No wonder he thought he was in residential school again. He was being treated like a child. Which is something I heard a lot (one care aide told me "it's like working with a 2yr old" about Dad's roommate). People with dementia are not babies and they are not children. They are still our parents, grandparents, respected and beloved elders who have lived more and accomplished more than we can imagine.

    I think hospitals need to have not just whiteboards, but places for patients/families to post photos. It is helpful for the patient, but also helpful for healthcare staff to see who the patient really is.

    I always wonder if I'm doing the right thing. Should I be sharing this story? Is it mine to tell? This happened to Dad, but Mom & I were there as well. The three of us were Team Dad. We did our best, but nothing worked and it was absolute devastation. The "life cannot go on without you" - kind of devastation. But hopefully I can help out. So people know, so it doesn't happen again, or it stops happening if it's happening right now.

  15. 15 Oct, 2017 | Miranda Tom
    Sheryl... fantastic job!  You are making a difference 💖 Your dad was so lucky to have you by his side 💖
  16. 15 Oct, 2017 | Jeanette mountain

    i feel so proud of you Sheryl for what your doing for your dad .i know the horror of residential schools do many don't really understand the on going problems of our life and families .take care Sheryl 

     

     

     

     

     

  17. 15 Oct, 2017 | Sheryl Harry

    Hi Lee,

    You're right, he was very kind and thoughtful. He would share whatever he had... food, gum, pop, a story or a joke... if you would sit with him for a while. He loved to visit and he loved visitors. Hospitals don't make this easy, with parking fees, charging for Wi-Fi, not having chairs or space for chairs, etc. There was one ward that didn't allow us to use any washroom at all on the whole floor. We had to leave Dad & take the elevator down to the main floor to use the washroom.

    Every room Dad was in, I remember thinking I would stay there with him if there was a recliner chair or a sofa chair that turned into a bed. There were long stretches where I put two chairs together to sleep next to his bed. Uncomfortable but necessary.

    Thank you so much for writing, Lee. Thank you so much for understanding and for loving Dad. I love him like crazy and miss him like I can't even explain.

  18. 11 Oct, 2017 | Lee Tremblay

    hi Sheryl your Dad and i were first cousins. He was a very kind man. When we first met our cousins they were very accepting of us. The last few years after we met I'd remind him we were related and he'd say its nice to see me. He'd smile but i knew he didnt remember me. He was so kind anyway.

    He will not be forgotten by any of us. We love him and miss him ! He's in a safe and happy place with family❤️

     

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