Thea Maria

Categories: Living with Dementia, Voice of Lived Experience|By |Published On: May 1, 2022|

A daughter celebrates her resilient and gutsy mom.

This article was written by a guest contributor, and the views, thoughts and opinions expressed in this article belong solely to the author.

My story begins before I knew it started. My mother Mary came to Canada in 1955 and was a matriarch for many of her family members. She had gone through hard times (World War II), was resilient and gutsy and made a good life for herself and for her family.

Mary in 1955

Through her strength, one could not see her anxiousness and overprotective nature. She shielded her children and restricted their social circles out of sheer love. She didn’t want them going anywhere or taking risks of any kind while they were growing up.

She was a workaholic from young but was always loving and had a funny and quirky personality. Even in her old age, she continued to work on her farm and things appeared status quo, so there was no clear signal to alert us that she may have been suffering from anxiety, or early dementia for that matter. Furthermore, mental wellness was not on the forefront back then and was not discussed openly. So, no one really knows when it began because there were many impediments for diagnosis or even simple awareness to occur.

Mom’s endless jest

Mary never wanted to celebrate her birthday, ever. She claimed she was 27 years old, and that was that. Her being 27 became a humorous sentiment that the family honoured in chagrin. Things started to get weird when her children were older than she claimed she was. Over time, even her grandchildren became older than her, but she insisted she was still 27. The grandchildren would laugh, and she would laugh too but be ironclad in her claim.

Ironically enough, it is now — at the age of 96 — that she has been diagnosed with dementia and asks for her real age. She asks, “How many more years do I have until I turn 100 and become a centenarian?” She continues to ask because she wants a letter from the government or the Queen recognizing her 100 years of life.

Mary in 1998.

Having said that, it’s not that she is more aware now — on the contrary — she doesn’t want to be called “yiayia” (grandmother in Greek) because she believes she is too young for that title. This change of title has been an adjustment for the adult grandchildren that she helped raise, for they have always called her yiayia. She now wants to be called Thea Maria (Aunt Mary) because she says she is not old-looking. As a matter of fact, she continuously asks her children, “Are you sure I gave birth to you, or did you guys give birth to me?”

As immigrants my parents became Canadian citizens and learned English, but mom’s English was always somewhat unique. She used to laugh and say, “Why should I worry about speaking English properly? My daughter teaches English.” She would giggle incessantly.

With dementia most people forget their newfound languages and go back to their mother tongue, which becomes an obstacle — one my mother is facing now. It’s not that she didn’t learn how to speak English, she just can’t remember most of it. Some words are there and random but more like salutations and rote phrases used in typical conversations.

Mary in 2022.

I share this because there may be other adult children out there facing the same problems I am facing. Her being unable to converse in English prevents her from participating in organized dementia events, and thus, I attend webinars and transfer the shared ideas to my mother.

She is quite proud, and her quirky personality and humour have masked a great deal of what she was feeling, and probably more so, what she was suffering. For instance, she insists she does not need glasses, when in fact she does. But she will not wear them and hasn’t, even though she has gone to the optometrist and bought a few pairs. Unfortunately, her farsightedness prevents her from doing tasks she might otherwise like, but she says that’s not so, and she does do what she likes. So, we leave it at that.

"She knows all the words and recalls stories of her youth when she hears those familiar tunes ... her head bobbing up and down."

– Patricia Dipede

Prolonging joy

I would like to share some things that have helped my mother tremendously and hope it might help others who are caregiving.

Mary driving a tractor with her husband in 2015.

Her mobility is not great now. She still gets around gingerly with a walker, but she can’t do too many things physically. With COVID, one good thing came about — churches put their masses/sermons online and offered them to those who couldn’t leave their houses. Whatever one’s religion is, it seems to be the one thing that sticks in dementia patients’ minds. She is amazing! She recites all the hymns and prayers word for word and gets up and down during the mass to abide by the religious rituals, whereas if mass was not on, she would remain sitting the whole time. My sister does the incense and the candle lighting that my mother used to do all the time.  When she smells the incense and sees the religious candle her eyes light up. This sensory journey fulfills her and reminds her of her life’s special moments and traditions.

The other facet of inclusivity that has helped her is her traditional Greek music. Again, she knows all the words and recalls stories of her youth when she hears those familiar tunes that spark memories of happy days in her past. She “dances”, she says, with her head bobbing up and down and swinging while sitting on the couch. This melodic time gives her happiness and some physical activity.

My brother takes her out all the time for drives. She counts the cars and likes to watch the people out and about. This reminds her of her time with my father, who just recently passed away last fall. Curiously, my brother reminds her of her husband and that gives her comfort. We know now that she is suffering from a sickness, so we do not correct her.

In fact, the entire family tries to make it as easy as possible for her, so whenever we chat with her, each of us introduce ourselves in conversation so she doesn’t have to ask. She has children, grandchildren and two great-grandchildren, so there are quite a few.

Things to do with older adults who are non-English speaking and have little mobility:

Mary [right] and her husband [left] in 2021.

  • Watch church mass via YouTube.
  • Listen to their favourite songs in their mother tongue.
  • Read at bedtime: stories and poems from early readers from their homeland.
  • If religious, do prayer with them at night and recite family member names, wishing them wellness.
  • Drive to the places they lived and worked when they were young.
  • Fold laundry.
  • Stretch and do simple yoga moves with the walker or while they sit, playing relaxing music in the background.

There is so much to write, as 96 years of living does not just happen. In hindsight, for the longest time we all protected her and covered for her because no one really thought anything was wrong. Looking back, she could have had early-onset dementia, but to put things in some constructive timeframe, it wasn’t until she was 92 and came to live with us that it became apparent, and she was diagnosed with dementia — which took a lot of advocating on my part.

Now, if she wants to be called Thea Maria, then so be it — she has earned it!

GET MORE INFORMATION

Discover more articles about living well with dementia, such as The Soothing Power of Music and Nature as Nurture.

ABOUT THE AUTHOR

Patricia Dipede is a retired teacher and the youngest of Mary’s three children, with James being the oldest and Demetra being the middle child. All three live less than 10 minutes apart in the Greater Toronto Area, which helps to make the shared experience of caring for Mary as seamless as possible. Prior to their father's passing in September 2021, the three were care partners to both their mom and dad.

Dipede is also a mother of two beautiful adult children with wonderful spouses and a proud grandmother of two little boys. She says it helps to have all the siblings and their partners working together, for it is not easy living with dementia and watching their loved ones endure it.

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