A care partner’s reflections on a journey with FTD.

Photo: D Barrette-Marcuccio

I've often quoted that the journey of caring for someone with Frontotemporal Dementia (FTD) is not for the faint of heart.  I truly believe that caring for someone living with FTD is a personal choice, one you make early on, which hopefully, can sustain you.

My journey began when my husband John was diagnosed with Behaviour-Variant Frontotemporal Dementia (bvFTD) in September of 2015, at the age of 61.  It took us a long time to get a diagnosis, years in fact, but we were fortunate, we ended up, at the Memory Disorder Clinic at Elizabeth Bruyere Hospital in Ottawa with a remarkable neurologist, Dr. Andrew Frank.

Photo: DBarrette-Marcuccio

Photo: DBarrette-Marcuccio

I think that at first, we were mostly shocked at the diagnosis. My initial reaction was to find out as much as I could about this type of dementia to address the fear and anxiety I was feeling.  My husband’s family, who lived five hours away, were quite upset at the diagnosis as was our daughter Stephanie who was living in Toronto at the time.

Stephanie started coming home more frequently as she was very close to her father.   She truly was heartbroken at his diagnosis and fearful of losing him.  Her primary coping strategy was to not think about the longer term but to just focus on the day-to-day connections.  This meant she made many more Facetime calls, frequent trips home and started focusing her energies on caring for her father.

When John was diagnosed, I was still working as an executive. I started to readjust my schedule to accommodate Dementia groups/meetings and medical follow up to gain some support and ensure that we were doing all we could to address his dementia.  John was on medical leave for close to 18 months and would ‘retire’ officially, in 2016 as did I.  My original plan was to work as a consultant and had registered a business “Future Transitions Management”, but I quickly realised I had to forego that plan as I would need to focus on caring for John.

Photo: DBarrette-Marcuccio

Photo: DBarrette-Marcuccio

From the start, my approach has been that we live life to the fullest and make the days count.  We joined a gym, John began participating in day programs and observational research, we began meeting other young onset couples for support, recreational, and social activities.  I also learned, following a couple of ER visits, that John could develop delirium that rendered him unable to function and/or walk if he got dehydrated or had an infection.  This journey with FTD has ongoing issues, challenges, and changes you must learn to adapt to.

The more I learned and connected with others living with FTD, the better and more empowered I felt.  At the same time, I recognized how many caregivers have little knowledge on what this journey entails or how to navigate it, so I started doing advocacy work, helped set up focus groups and established a couple of Facebook groups, one national FTD group (275 members) and one, local Young Onset Dementia group (52 families).   I felt I should share or leverage what I was learning and build a community.  I was surprised at how little research and/or focus FTD has here in Canada in comparison to the US.  It also provided me with a purpose and a way to channel my energies.

In 2020, when Covid hit, John’s father passed away in April and his mother subsequently got placed into long-term care following a dementia diagnosis.  I tried, remotely, to support his sisters who had to cope with everything, the funeral, placement, and sale of the family home the same year.

Everything shut down, all doors, programs, literally, closed, social outings all ended.  I cancelled all PSWs who were coming into the home for the next 2 years. Our daughter started working remotely in Ottawa during the pandemic to provide me with some back-up, which created a lot of stress and anxiety for her but also meant she shifted her entire life to support her father.

John’s FTD progressed during this period compounded by limited social interaction.  I tried to get him involved in online programming, some physical activity, set up a treadmill and we went for walks, which helped my stress levels. But he stumbled during one walk in 2020, barely making it back to the car.  I was alarmed when his depth perception started to fail, particularly on the stairs, I thought he might stumble and fall.  I devised interim and longer-term solutions to address this (i.e. tape on shower step n stairs, installing a chair lift).

I’ve discovered that love can sustain you and that support can sometimes come from unexpected people and places.  I recognize that those that can, do and those that can’t ought not to be judged.

– Danielle Barrette-Marcuccio

Then when John experienced his first seizure in May 2021, I literally thought the worst. He went to the ER, which dramatically changed our journey with FTD.  His neurologist counselled us to look at anti-seizure medications, should there be a recurrence.  Six months later, he had another seizure. In addition, he was now having trouble swallowing and started to walk with a shuffle.

Once on anti-seizure meds, John experienced, 2-3 times a week, “mini seizures” that required ongoing monitoring and changes to medication for the next 8-9 months.  It took us through to the summer of 2022 to stabilize his medication and seizures.  This was emotionally draining and created ongoing anxiety and stress for both my daughter and me.

If this wasn’t challenging enough, I lost my brother during this period, in April 2021, to Covid.  He was our family’s rock, everyone leaned on him, particularly my mother during the Pandemic.  This loss knocked the wind out of our family’s sails.

Photo: DBarrette-Marcuccio

Now that we have the flexibility of more social contact and connections, including celebrating John’s 70th birthday in October 2023, I feel there’s much more love and support surrounding us.  Additionally, my daughter started dating someone during Covid who has provided her with emotional support, comfort, and someone to lean on.

I’ve learned so much in this journey, not just about FTD.  I’ve learned about the kindness of strangers keeping an eye on my spouse so he doesn’t wander, a company that honours a credit that my husband is not able to confirm, a doctor who calls you within hours when John was in the ER.  I’ve also learned to be patient and kind with myself, not to chastise myself when I can’t get something done or my house is in disarray.   I’ve discovered that love can sustain you and that support can sometimes come from unexpected people and places.  I recognize that those that can, do and those that can’t ought not to be judged.

I say this frequently, I feel blessed to be on this journey.  To have family supporting us every step of the way. I feel blessed to have a husband who is so good-natured and offers me daily smiles and although he can no longer speak and must face multiple daily challenges, he holds onto my hand tightly and I feel the love in my heart.  I can honestly say that I’ve never loved my husband more “for better or for worse”.


More from Danielle from the Live Well article archive: Supporting Supporters.