My name is Gary Thandi, I was born and raised in Campbell River, BC and have lived in Surrey now for 20 years. I have my bachelors and masters degree in social work and have worked in the social services and counselling sectors for over 20 years.
I am the founder and executive director of Moving Forward Family Services a counselling non-profit and registered charity that offers low barrier counselling and support to anyone across the country. I started the agency as I have seen over the years far too many people who are struggling with mental illness, substance abuse, grief or trauma, fall through the gaps. Our model is quite unique, as we are not funded by traditional government ministries – we instead rely greatly on community support and keep our expenses low by operating out of donated space, having minimal hierarchy and bureaucracy, and we offer free and low-cost services with fully supervised new counsellors and social workers, many of whom are students on school practicum or newer graduates.
But the purpose of this article is not to talk about what the agency does or how we do it, I’m here to talk about my lived experiences of having a spouse being diagnosed with early onset dementia. But I will come back to the agency, as I channelled my grief into my work, and was able to develop something I am proud of.
My wife Cyndi passed away from frontotemporal dementia in January 2017, and this is one of the first times I am publicly sharing my experiences with this horrible illness.
Cyndi was in her mid 30’s when she began to exhibit symptoms. The chance of being hit by lightning is probably greater than having dementia in your 30s. My memories from 2012– when she first started exhibiting symptoms, and onward from 2012, are somewhat fuzzy. Trauma and its impact on the brain has a way of doing that. Some memories are quite vivid, while others are quite gray and hazy. I do remember that some days I would wake and basically just wait for the day to end, in hopes that the next day may be slightly more manageable. And my body and brain to this day still have a long way to go towards healing. Notice I didn’t say recovery from trauma, as I am fully aware that I will never truly recover, certainly not fully.
I met Cyndi in 2001, we married in 2003, and had our first of two children in 2004. I have some beautiful memories from 2001 to 2012. We grew so much as a married couple, and as parents. Cyndi had her degree in child and youth care and she worked as a child and youth care worker in the Surrey School District - but she realized after doing that for a while that her true passion was teaching children, so she went back to school to gain pre-requisites to become a teacher. Much of this time she was pregnant or nursing a fussy baby.
I learned so much from Cyndi on how to be a parent. I had no doubt I would be a loving dad, but she taught me how to be a nurturing and involved dad in ways that I will be forever grateful for.
We went on one of many great family adventures when we moved to Victoria in 2006 so she could pursue her teaching certification. I worked in corrections at the time, as a probation officer, so was able to transfer to an office there. My parents lived a few hours up island, in Campbell River still, so they would often travel south along the island highway to help babysit. This family support has and continues to be crucial in my own life and my ability to continue to function, and I am very grateful for it.
After Cyndi completed her studies, we moved back to Surrey where she found work as a teacher with the same school district. My parents also moved to Surrey around that time, and we all lived together. After a year or so she decided she wanted to improve her skills in order to work with the more vulnerable children she encountered, so she went back to school to complete a Masters Degree in Special Education. She did all this while nursing our second child. She was always ready and willing to take on whatever challenges that came her way, and she handled them all masterfully.
As I am writing this, I can feel some rather overwhelming sensations in my body. Every so often I have had to stop, take a few deep breaths, or stop and go do something else for a little while, before returning. Cyndi passed away in early 2017 and sometimes it feels like she just died yesterday and the sense of grief and sadness, while less frequent, is still incredibly powerful and still at times overwhelming.
I remember the first time that I noticed that something was different with her. We were on vacation with our two sons in San Diego, and I can’t remember what we were talking about, but she laughed, and I remember thinking I’ve never heard her laugh like that. We had been together for over 10 years and shared plenty of laughs, but I remember distinctly thinking and pointing out to her that I had never heard her laugh like that. She didn’t know what I was talking about, and if not for what else was to follow in the coming years, I would have never given that day a second thought.
But the unexpected behaviour continued.
Her conversations with people became increasingly quite intrusive – she would ask them rapid questions in succession, more like an interrogation than a conversation, all while her tone/affect stayed the same. She made comments about their appearance or weight and didn’t realize those were not socially appropriate – and then would be surprised – but again with no affect – when I would talk to her about what was increasingly becoming concerning behaviour. And the concerns were noticed at her work as well. She taught kindergarten and grade 1, and for years the kids in her classroom absolutely adored her, and she adored them. But once a child wandered out of her classroom and she didn’t notice, and then when it was brought to her attention, there was again no affect.
School officials attempted to contact her via email, but I soon learned she had stopped looking at her email, so they eventually called the house, and that is when I realized this was more serious than I had previously thought. I had often passed off those other recent behaviours as somewhat odd, but ultimately, I dismissed them, figuring maybe it was just stress-related but as she always did, would eventually manage and return to her high functioning self. However, she loved her job and no way would she ever do anything to jeopardize not just the job but no way would she ever do anything remotely harmful or careless in her work with kids.
Even though she didn’t think anything was wrong (and I will speak more about what frontotemporal dementia is, and its devastating impacts on the brain) I was able to get her placed on sick leave so we could try to figure out what was going on. Initially I thought it may be stress related, and even later wondered if it was some mental health issue, even though none of the behaviours seemed to quite fit. Because of the work I do, I was able to get her in to see a psychiatrist that I knew. I also knew many doctors and would speak to them about what was going on, and one – a gerontologist – correctly diagnosed what it turned out Cyndi had. She was able to refer Cyndi into a specialist at the University of British Columbia.
While I have had a very traumatic loss, I often reflect on the privileges I had. I was able to advocate for Cyndi with her school, get her on a sick leave where she would still earn income, get her connected to a psychiatrist while most people wait years to get such support, and get her referred to a specialist. I wonder if she had been a single parent – if the kids were showing up at school with the same clothes, and maybe not being fed properly - if no one was there to advocate, would she have lost the kids, and lost her job? Would she have eventually lost her home? As she physically looked fine, and the illness and what it was doing to her, while becoming increasingly obvious to those around her, was not obvious to her. I wonder if she had been on her own if she would have ended up homeless and extremely vulnerable to exploitation. In a disconnected, individualistic society, such possibilities are very real.
It was this specialist at a clinic at UBC, who after some testing, diagnosed Cyndi with frontotemporal dementia. It was the same diagnosis that the gerontologist had suspected, and the one after I learned more about it – I had prayed daily that it wasn’t. I had actually hoped it was a mental illness – imagine wanting your spouse to have a mental illness, as the alternative was so horrible. Just as difficult as hearing it was having to tell my parents and her parents that she had frontotemporal dementia.
My entire body is numb at this point. I step away to get grounded.
About 7 years ago, I set about learning everything I could about what frontotemporal dementia is. I had read up on it intensively, in hopes of finding some type of cure or at least ways to slow it down. Now I don’t remember much about it – again no doubt part of the whole trauma experience - so I had to look it up again.
From the Hopkins website:
“Frontotemporal dementia (FTD), a common cause of dementia, is a group of disorders that occur when nerve cells in the frontal and temporal lobes of the brain are lost. This causes the lobes to shrink. FTD can affect behavior, personality, language, and movement….
Symptoms of FTD start gradually and progress steadily, and in some cases, rapidly. They vary from person to person, depending on the areas of the brain involved. These are common symptoms:
As FTD progressively worsens, people may engage in dangerous behaviors or be unable to care for themselves. They may need 24-hour nursing care or to stay in an assisted living facility or nursing home.”
And it isn’t like Alzheimer’s or other forms of dementia – there were never any moments where she was lucid and returned to some previous version of herself. The only blessing, as odd as that sounds, is that in all of this she never knew that she was sick.
I refused to acknowledge what soon was evident – it was progressive, and it was devastating, to the person affected as well as to their loved ones. And the younger someone is, the more rapid the decline there tends to be. The medical science said there wasn’t anything I could do, so I tried alternative approaches. I took Cyndi to a naturopath, homeopath, to a Traditional Chinese Medicine Practitioner and acupuncturist, hypnotherapist, and tried many over the counter supplements, diet. Nothing slowed it down.
I stepped away from work and was grateful I have enough financial reserves to be able to do that. I had been in a doctoral program in education and dropped out prior to beginning work on a dissertation. I think often of going back but don’t think I am ready as of yet.
We had to put locks on the inside door to keep her from running outside the house as she had previously gone to people’s house asking to come inside just to look around, we had to put a lock on the fridge as she would eat even after being full, she would constantly repeat herself and engage in repetitive behaviour. She thought that if she stepped on cracks in the pavement it was bad luck so she avoided them, and believed there was someone watching her from behind our bathroom mirror. We stopped treatment with a naturopath as she started to pull out the IV needle. Soon she stopped talking all together and lost control of bodily functions.
It was then, in her late 30s, that we had to put her into a care facility. She was 39 while everyone else there was in their 80s or 90s. She was there for about a year and half before she passed away, as her brain no longer was able to send signals to her other organs and they shut down. My sons were 12 and 8 when she passed. They are now 18 and 14, and my oldest, who was about 8 when his mom first exhibited symptoms, has very few memories of how great a person and mom she was, and my youngest son was about 4.5 when she got sick and really has no memories at all of her. I try to share memories but still struggle as the reality of the loss also still hits me hard anytime I talk about her.
So even though I have worked in the social work area for many years, I turned to alcohol to cope. I justified it as just wine, though my usage increased dramatically. I was not only drowning my grief with alcohol, I was drowning my guilt and shame. I still have a long way to go in managing that. I felt guilty for the times I would get frustrated with her for behaviour that was not her fault. I felt guilty – still do – that I didn’t visit her as often as I should. My parents went to see her every day, as did her own parents. But I struggled seeing my love, who had very much been the head of our household – she was much more outgoing and personable than I was – the person I had planned on growing old and gray with – the person I very much considered my soul mate, no longer able to sit and engage in any kind of conversation with me or the two people that meant more to her than anything else in this world – her two babies.
I eventually realized I was starting to lose control with the alcohol. I have since found more productive ways to cope. I accessed therapy, including bio-neurofeedback and eye movement desensitization and reprocessing (EMDR), in addition to speaking to a counsellor for more traditional talk therapy. I joined a support group but it was several hours away so I struggled to make it out regularly. I incorporated regular mindfulness using a couple of apps on my phone and spent time every day exercising as well as focusing on eating better. I gave up sugar, processed flour and some dairy. And I remembered that Cyndi would want me to be there for her kids – our kids – and so I did my best to stay engaged with them and give them even more love to make up for the love she wasn’t able to give to them.
I also channeled much of my energy into the counselling agency that I had started. I reminded myself again that I had enough privilege to be able to afford therapy, healthy foods, exercise equipment, vacations away with my sons. But there are many people suffering, who can’t afford therapy and those kinds of privileges. In the past I used to accept it when people in positions of authority would say ‘it’s too bad, but there is nothing we can’ when I would tell them about the needs of our vulnerable communities. And often there was this subtle – and sometimes not so subtle – hint that I shouldn’t make too much noise as they held the purse strings and thus, I should just let it go.
I decided that ‘too bad but there is nothing we can’ while maintaining the status quo was no longer acceptable. That I was done with talking about trying to help our most vulnerable and just be met with excuses as to why we can’t rather than an exploration of what we may be able to do. I realized then that the people saying that, just because they had certain titles or controlled where and what to spend on, didn’t mean they necessarily were doing what was in the best interests of the people that they claimed to be helping. Often these people knew what to say but spent a lot of time and energy doing the opposite. And since I had zero dollars from them, I didn’t feel the need to step in line and shut my mouth.
And so I committed to helping those people who are struggling, who increasingly had doors closed on them. And the services we offer to children and youth are done under Cyndi’s Centre for Children and youth. Her legacy will therefore live on, and I look forward to continuing to honour the great person, mother and wife that she was.
I am grateful that my parents, and Cyndi’s parents, and friends and family, and colleagues, gave us all love and support. The care she received from health care services was also very much appreciated. When I criticize, I criticize systems because I find that they don’t care, they are inflexible, black and white, and even if just a few people in power hide behind them, truly transformative change is not possible … but people on the frontlines, they do absolutely care.
My healing journey continues. I could never have come to even this point without those friends, family, colleagues, health care professionals, counsellors. I also know – and this is something that I tell all of our counsellors and social workers – that the journey for the person with dementia or Alzheimer’s, or their loved ones, doesn’t necessarily follow a common trajectory. I know when I was engaging in self-destructive behaviour, and I knew when I needed to eventually stop. The people who supported me along the way, I am forever grateful to. And I also know I have a long way to go. I think of the person I was 10-15 years ago, and I miss him. He was a lot less jaded, slept better, and didn’t walk around having regular and overwhelming bouts of trauma related anxiety. And I definitely miss her. But that me is gone - and I’m still working on the new me.
I would just ask you, and this goes to anyone struggling with any type of physical or mental health issue – and it is something I have to tell myself – to take it easy on yourself.
For myself, I need to continue to work on myself, while continuing to focus on raising my sons and now, over five years after Cyndi’s passing, I am at least able to talk about it, and think about how to best honour her legacy. I look forward to that next phase in my journey as a wounded healer.