Caring for mom with dementia a journey of compassion

Disease doesn't change the person, writes Linda Fiddler.

My mom's dementia was temporal, vascular. She lived with me for 14 years, throughout her illness and also her death. When her doctor described her frontal lobe as decimated, I quit work to tend to her.

As her caregiver, I covered all costs. By 2017, I had spent my pension, savings — everything. However, I knew from caring for my hospitalized brother that I would not leave her with strangers. My keeping her was important, juxtaposed with our survival, and I struggled to do both.

During that time, she became ill and was admitted to the hospital. The doctors and nurses encouraged me to put her into a home, as she required full care and I was in my 50s. Briefly, I considered this because I was broke and tired ... but my mom decided for me.

While she was in the hospital, she had a few lucid experiences. During one such moment, her doctor asked me about my decision about placing my mom in care; in response, my mom took my hand and said, “Linda, you do what you need to, it's OK, I will be OK.”

Thanks to her words, she stayed with me until she died. What is striking about those moments of lucidity, however, is that during those brief times she became relaxed, calm and loving.

As the destruction of her brain progressed, she had more bad times than good, but her unselfish words of support motivated me to study the sounds and the gestures her frustrations evoked.

With observation, my understanding grew; like a non-verbal child, her sounds often carried meanings, like hunger, pain, anger.

Her brain and body became sentinels of her suffering.

This small realization helped me better read her needs and feelings, and I soon realized that my mother had her same basic needs including hugging, touching, conversation and entertainment — listening to readings from favourite books and music.

Her disease hadn't changed her, it had implemented a functional baseline change. She was communicating without words, and as her disease progressed she would also operate without sight, taste and sound.

Yet most people failed to recognize her as the same person that existed before her affliction, so many trite, cruel, dismissive comments were used in my mother's presence; “She is not the same” or “She is not who she was” or “She is in there somewhere.”

These comments dismissed my mother as non-social and the visitors dwindled away. Her responses to all these losses, unmet needs and pain were limited by the resources her changed baseline of function allowed her — anger, yelling and aggression.

A comparative life situation occurs when we work for bosses who don't hear us. As workers, we become angry, frustrated and, after each workday, we go home and these feelings manifest as grumpiness, affecting those we love.

Dementia is like that boss! It eliminates the right to self expression and communication by destroying sensory capacity, memory, language and leaving its victim grumpy.

Dementia changed the baseline my mother operated from, and left her with nothing but frustration, anger, pain and fear. Then it continuously minimized her world until it became a box where she lived, without loved ones, self identity, belonging or joy.

Yet the frustrations, agony, loneliness, depression and anger her illness inevitably led to were locked in that box with her and the key was discarded by her illness. Her brain and body became sentinels of her suffering.

She responded with the only resources left to her, aggression and frustration, but there were still moments her love and goodness escaped that guard.

We as caretakers see only the outside, but to be caring and effective caregivers, we have to remember and understand that the person we loved will still and always be the person we love.

Because, when all is said and done, the only relief in all that pain and terror they are forced to live in is you.