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2024 MAR Family Caregivers Blog

Family Caregivers' Blog is available to share helpful information to support families caring for those with dementia.



Entering a Facility, Yet Continuing Family Caregiving. Let's Take a Break!

Mrs. E's mother moved into a facility early in January, but in February, an opening became available at a preferred facility, prompting another move. With continuous changes in environment, staff, and activities, it's challenging for her mother to adapt. Meanwhile, Mrs. E finds herself busy addressing her mother's grievances and advocating for her needs to the staff. Her mother used to have access to a resident phone in the previous facility, but it's unavailable in the new one, leading to frustrations. She also complains about not receiving lunch boxes from neighbors (even though she does). Moreover, Mrs. E, noticing her mother's visual impairment and the dim room, requests brighter lighting from the staff. She also searches for suitable activities and ends up visiting the facility three times a week to improve her mother's environment. All these efforts leave Mrs. E feeling exhausted. She plans to reduce her visits this week.

It's okay to take a break! Even if things aren't perfect, there are caregivers in the facility. Rest for family caregivers is crucial. While caregivers endure physical strain, many also experience feelings of guilt and mental anguish because they can't provide adequate care due to the energy and time consumed by environmental adjustments, advocacy for the care recipient's needs, decision-making, idea generation, and seeking support outside the facility. Neglecting one's physical, mental, and emotional well-being leads to accumulating stress. It's important to prioritize self-care. Shift your focus a little, be kind to yourself, and carve out some time for yourself every day. Free yourself from the rigid expectations of being a family caregiver. Create mental boundaries like "Today, I'll only do this much caregiving," then switch gears. Acknowledge that shifting your mindset and emotions is crucial. "I'll limit caregiving to this extent today," but afterward, engage in "what I want to do." This mental shift might relieve some tension. Create a mental endpoint for caregiving and transition to doing what you want afterward.

Are Family Members Looking in the Same Direction in Dementia Care?

Mrs. N is caring for her mother at home. Last September, a lively baby was born, and it seems her mother enjoys helping with her grandchild. Mrs. N's husband is actively involved in childcare and caring for her mother, for which Mrs. N is very grateful. However, she has started to feel that her expectations regarding her mother, who has dementia, differ from those of her husband.

While Mrs. N aims to maintain the current status quo, her husband believes there's still a possibility of improvement, such as in memory loss. This leads to discrepancies and differences of opinion. Is this due to differing views on the potential for improvement in individuals with dementia? This may have been something that resonated with other participants as well.

It depends on the stage of dementia, but in the early stages, there may still be plenty of room for learning and adaptation. Similar to other chronic conditions, as an incurable illness progresses, the most important aspect becomes the person's "quality of life." The focus of care shifts from "curing" or "enhancing the person's function and abilities" to "enabling a comfortable life." The meaning of a "comfortable life" or "quality of life" may vary from person to person, but primarily it entails being free from suffering. It's about being able to spend time calmly and without irritation.

While observing the progression of her mother's dementia, determining whether the current goal is to maintain the current state or to seek functional improvement, the family may need to decide based on her mother's response. Consulting with others involved and discussing with case managers or doctors about the progression of dementia and what the family can do may be beneficial for both the individual with dementia and the caregiving family.

Refusal to Participate in Care and Activities - Common in Dementia

It's a topic we've touched on before, but today, several participants mentioned that family members with dementia often refuse assistance with bathing or participating in activities.

It's a common occurrence with individuals who have dementia. Even without dementia, we all have days when we feel lazy or unmotivated to engage in activities or routines. Skipping a workout or opting to sleep instead of taking a bath are things we may do when feeling tired. Similar phenomena may occur with individuals who have dementia. However, what may seem routine to us can be incredibly challenging for someone with dementia. Bathing and activities (such as walks, facility-based activities, or outings) require not only physical effort but also cognitive engagement. For individuals with dementia whose cognitive function is declining, these tasks can be monumental. Consequently, they may often respond with "no" or refusal to anything that seems overwhelming. This can be considered one of the symptoms of dementia.

Instead of trying to persuade them, it's often more effective to find ways to gently transition them to activities, perhaps by engaging in other conversations while moving towards bathing or activities. Depending on the stage of dementia, logical reasoning or persuasion may not work well. Trying to make sense of reasoning or persuasion can further burden the brain and lead to more resistance and refusal.

For example, when Mrs. N's mother has to wait a long time at the dentist's office, she distracts herself by singing songs instead of waiting silently. Employing such strategies can help manage refusals. It might be beneficial to have several such strategies in place. While medications may be used to reduce frequent refusals and outbursts, it's essential to reserve them as a last resort and prioritize trying various approaches to address refusals.

How to Navigate Healthcare Systems in Caregiving

- A Comparison between Canada and Japan -

Mrs. M's mother resides in Japan, while Mrs. M herself provides remote caregiving support. In Japan, the care managers conduct monthly assessments for Mrs. M's mother and provide monthly updates on her care. Furthermore, they coordinate with day care centers and maintain effective communication.

In Canada, although the caregiving systems vary by province, they are operated in a similar manner across the board. In British Columbia (BC), the Home Health services provided by the Health Authority oversee caregiving tasks, with each client assigned a case manager. However, unlike in Japan, there is no monthly assessment system in BC. Unless concerns from physicians, families, or staff involved in care are communicated to the case manager, there is little contact outside the annual review. Of course, clients at higher risk may undergo more frequent reviews.

Yet, if there are concerns regarding family or caregiving, it is essential to proactively contact the case manager. It's important not to hesitate but to call and share concerns openly. Case managers are obligated to respond to communication from families. While there may not always be a solution to the concerns raised, informing the case manager about any issues is crucial, as it may lead to the identification of specific improvement measures. Unfortunately, family caregivers must adhere to the caregiving system in their respective regions.

If someone requires caregiving but has not yet received it and does not have a case manager, in BC, they need to contact the Home Health Intake Line based on their address to request a caregiving assessment. It's essential to clearly communicate the type of caregiving required, which typically includes assistance with bathing, dressing, medication management, daycare, and facility assessments.

In Ontario, there are organizations that provide services such as peer mentoring for family caregivers. Here is a link for reference, as recommended by participants in support groups.


March's convenient gadgets!

Image of Water Leak Sensor Alarm
Image of Starfish Bath Alarm

Prevent bath water overflow!

It's troublesome if you leave the water running and forget about it!

Here is a cute item that both adults and children will want to use for their bath time.

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