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frontotemporal dementia: finding joy, love, and making new memories

when chantal patenaude became a caregiver to her mom pierrette, it became a chance to connect with her in a new way, but also an opportunity to witness her mother finding happiness and friendship despite having dementia.

pierrette patenaude found love while living with dementia
as agonizing as it was to gradually lose her mom, chantal patenaude says that it was crucial to notice the positives and live in the moment. getty

when i heard that bruce willis had been diagnosed with aphasia last spring, i couldn’t help but wonder if his path would be like my mother’s, where aphasia was a precursor to the early stages of frontotemporal dementia (ftd).

i was saddened when i later heard of willis’s ftd diagnosis, but i wasn’t surprised. in my mother’s case, aphasia and dementia came hand in hand. they took turns insidiously nipping away at her abilities, until they won the unfair combat.

although i initially associated some of mom’s behaviour with the normal aging process, strangely, i felt relief when i heard the aphasia diagnosis. i could put a name on why she had trouble finding words, expressing her thoughts, and at times, understanding what was being said. in a sense, the diagnosis was empowering, as it allowed me to take steps to help mom. the first thing i did was organize a speech therapy care plan at the aphasia centre to help her find ways to communicate better.
in no way did the second diagnosis bring me relief.

dementia. it’s such a scary three vowel word. i knew that its outcome was final, and that the trajectory was cruel.

dementia is sneaky, greedy, and relentless

as mom manoeuvred through the phases of the illness with resilience and formidable strength, i spent many long hours caring for her while choosing to focus on what she could still do, and not on what she could no longer do. that is not to say that the progression of the disease was not dreadful. it was. witnessing my mother lose her faculties was excruciating. she went from forgetting a specific word to only being able to utter the words ‘oui’ and ‘non,’ from walking unassisted to being wheelchair bound, from living alone to living on a memory care floor in an assisted-living residence, from being independent to requiring 24-hour care. dementia is sneaky, greedy, and relentless. it kept on destroying mom’s brain cells until it reached its goal: her demise.

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it’s no wonder that there is so much fear and anxiety around dementia, but as surprising as it might sound, its course with my mother was not entirely dire. she did experience a range of distressing symptoms over a period of six years from her diagnosis, but there were times of joy, surprise, and happiness. i hope for bruce willis and his family that their experience will be like ours in that respect. as agonizing as it was to gradually lose mom to this insidious disease, it was crucial to notice and acknowledge the positives, to live in the moment, enjoy the good times, and to create new memories.
a sense of humour was essential. often, if i did not laugh at a situation, i would have cried instead. for example, one-time i said to her, “mom, you forgot to take the yellow pill,” and point to the medication on the tablecloth. “what is it for?” she asked. “it’s for your memory,” i replied. “i don’t think it’s working,” she said. we both laughed knowing only too well she was correct.

she remained mom: kind, gentle, grateful, and delightful

the doctor referred to my mother’s dementia as atypical frontotemporal. while her faculties gradually declined, she never showed the extreme behaviour and personality changes that the doctor warned me about. yes, there was a period where she had paranoia and delusions, where she imagined there were strangers hiding in her closet or coming and going in her suite. she went through a phase of hiding things, forgetting that she had hidden them and then accusing others of stealing. she also wandered at night, on and off, for several months, momentarily confused and lost, but in hindsight, it never got as bad as i feared. she never became aggressive, angry, unpleasant, or lost her inhibitions. through the many losses, she remained mom: kind, gentle, grateful, and delightful. her brain cells kept on shrinking, but her essence prevailed.
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canadian centre for caregiving excellence

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as scary as moving to a retirement home was, it allowed my mother to reunite with her dear friend of 54 years. they became neighbours again, rekindling their friendship and their memories, until insatiable dementia made it hard for mom to keep up. it’s also where, at the age of 83, she found love. she met george — a 96-year-old gentleman — and together they shared a special friendship. it was certainly unexpected, but it was real. mom looked forward to getting up in the morning, to having lunch with him, to attending weekly concerts and “happy hours” in his company. together, they went for walks hand-in-hand, enjoyed tea time, and watching television. she might have had few words to express herself, she might have been confused about what time of day it was, and she might have forgotten past events, but she still had a life to enjoy living and love in her heart.
 pierrette patenaude (left) and her daughter, chantal. supplied
pierrette patenaude (left) and her daughter, chantal. supplied
my mother was sociable and loved to go out. as the disease progressed and her situation changed, i modified her favourite activities and discovered a new mom as we went along. instead of going shopping at a mall, we went to the drugstore; art books replaced visits to the national gallery; we travelled the world through her photo albums (revisiting the tulips from amsterdam and the piazzas of florence). i took her to cafés for a large latte and a ginger cookie for as long as she could manage it. the little things we did together were meaningful and made a difference: dancing in her suite to oldies tunes, looking at children playing in the park, participating in sing-alongs, holding hands, looking at family photos, painting a flower, eating ice cream and maltesers, reading the memoir that she wrote ten years earlier, lying next to her in silence.

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to help her live the best quality of life possible, i focused on her well-being and her happiness. we lived in the now.
my mother might not have been verbally responsive in the later stages of the disease, but her piercing blue eyes spoke eloquently, and her smile — no longer outlined with her signature pink lipstick — brought sunshine to the room. her joy was palpable when she was with family. we always felt her gratitude and her love.
i share the sadness of this cruel disease with bruce willis and his family, and i’m grateful they are bringing attention to it. increasing awareness and learning about ftd can, hopefully, help families create opportunities for joy during a taxing time.
as mom’s primary caregiver, i connected with her in ways that might not have been possible otherwise. i not only became a parent to my parent, but i also became a better person. those tender precious moments with mom, i will cherish forever.
chantal patenaude lives in montreal, quebec.
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