“Michelle” is a full-time family caregiver to her Mom, “Rita,” who has dementia. Like other family caregivers, she wears many hats. She is the family caregiver, the caring daughter, who also maintains a full-time job. 

Although Rita currently lives on her own, Michelle comes over every day to help with daily activities. These include cooking, cleaning, laundry, running errands, taking Rita to appointments, and being her main companion. We are all too familiar with the very busy “lifestyle” a primary family caregiver often has when supporting someone with dementia.

Rita’s Routine

Being the primary caregiver for Rita afforded Michelle a level of informal “expertise” through her many years of hands-on caregiving. Through trial and error, she was able to figure out and appreciate how important daily routines are to her Mom’s well-being. Sticking to a daily routine and adhering to certain “do’s” and “don’ts” gave Rita a feeling of safety and security. 

Feeling safe and secure for someone with dementia, or anyone for that matter, positively impacts our well-being. Strictly adhering to the “do’s” and “don’ts” also allowed Rita and Michelle to keep the peace in their relationship. Sticking to a routine for someone with dementia gives them a sense of “familiarity” and calmness.

When Good Intentions Go Wrong

Michelle knew that Mom would be having visitors from out of town who will stay with Rita for a week. Michelle did everything correctly. She clearly communicated to her Mom’s visitors the importance of Rita’s routines. She alerted them about the “do’s” and “don’ts” that they should follow in order to make this visit pleasant for everyone.

Sadly, her visitors did not really “listen.” They didn’t feel the need to follow the instructions shared.

Rita does not like to go out for supper. On the rare occasions they do go out, Michelle does not let Mom pay for the meals. She knows that her Mom would become obsessed with the departure of her money. Michelle is also careful not to move anything out of its place in Rita’s home.

The very first night after the guests left, Michelle received dozens of distressed phone calls from her mom. 

“Where is my pillow?” 

“Who were the strange people in my home?”

“They took my money!”

“Why did I have to pay for the food at the restaurant?” 

This went on for several days after the visitors left.

Walking a Mile in Rita’s and Michelle’s Shoes

Have you ever experienced a loved one going through your stuff and leaving things out of place? What about a good-intentioned partner “cleaning and organizing your desk” as a surprise? Have you ever felt upset not being able to find things afterwards?

Our routines may not make sense to others, but it does for us. “There is order in our chaos.” Our habits, routines and peculiarities give us a sense of security. Can you imagine the level of stress that both Rita and Michelle were under simply because well-intentioned others chose not to listen? All these could have been avoided.

Meaning Behind the Behaviour

The meaning behind the behaviour in this story is that someone can become so displaced from altering a routine. Familiar routines can really help a person living with dementia to stay more independent, reassured, confident, less distressed and more at peace.

In some cases, the meaning behind the dementia-related behaviour is not always clear or easily determined. In Rita’s case, it was already clearly established.

The moral of this story is to listen and be respectful to the familiar routines of someone with dementia. We must consider the person with dementia and their primary caregiver the informal “experts” on what is best for them.

When a dementia family caregiver tells you something about how best to support their loved one, believe them.

The story shared above is for informational purposes and to share best practices in dementia behaviour management. Each person is unique and what may work for one person, may not necessarily work for another. If you are in need of advice on how to keep routines or needing help on understanding ways to have a successful visit, contact us for our no-cost 20 min phone or Zoom consult for new clients.