Advocating Within the Facility

Are family concerns feeling inconvenient, not valuable, unheard? As if facilities are making decisions about our elders, without us? Yet we are their designated advocates and voices.

I had thought I would be the daughter who spends time with her father creating joy and loving moments; the one who rides the journey with her aging dad to his last breath, making this journey the best it can be, in the most loving way. But life has other plans...

The Advocate

I wonder how many family members or advocates feel viewed as a "pain in the ass," or as being adversarial, for simply asking questions and wanting answers to issues and concerns that negatively impact their loved ones? Advocating is not easy! It is a whirlwind of emotions moving through grief as we watch life gently erase abilities recently enjoyed. Looking out for our elders, monitoring their care, trying to protect them and advocate for them is a brave, wearing, and unsupported venture, in environments that are understaffed, fragmented and can often feel unwelcoming and strained.

I want to send a huge shout out to the family members and advocates trying to create a better life for our seniors living in long-term care. I believe it is the most noble and important of journeys! Who else is more willing to stick their necks out to protect our seniors? Who else really cares that much? Our seniors are beautiful humans deserving of quality care and the best quality of life we can offer them. But, we do have to advocate tenaciously in this environment and it can be exhausting.

In my fathers LTC facility the Resident and Family Advisory Group was unbiased and chaired by the CEO of the facility. When the topic of Resident Care Plans arose, and family members shared their concerns and frustrations, none of it was recorded in the meeting minutes. Seniors or their advocates don't seem to really have a voice.

Residents’ Councils and Family Councils need to be empowered and impartial, so that recommendations are implemented.

The Elder Voice

Family have been entrusted by elders to be their advocates, and they need us to be heard.

I wonder how many family members or advocates feel as if they're not being heard? Voiceless? Helpless? As if concerns seem to be repeating over and over and over, but falling on deaf ears?

A Safe Place for Issues of Concern

I feel there needs to be a separate working group, a safe container, for residents and those advocating for them within long-term care facilities. We need a place within each facility where family can share experiences honestly, knowing they can bring forward issues of health, safety and valid concerns in an open way, one that doesn't create an adversarial environment for the resident or for the person(s) advocating for the resident.

We need to engage in conversations with each other, even if we don’t agree. Our unique perspectives add to the narrative and bring us closer to a solution.

The entire care team has support when discussing issues, but as a family member advocating for my loved one, I have no such support group.

It takes great courage to come forward with issues of concern. No one wants to create waves; it’s uncomfortable. There is always the risk that bringing forth concerns will not be well received but instead met with resistance, defensiveness, contempt and anger and may ultimately affect the resident’s quality of care. Advocates, therefore, may remain silent rather than share important information.

My father is 94 and not able to advocate for himself. He does not realize that he has a call button to press for help, nor does he ever ask for help, for water, or for someone to wash his urine-burned skin. He does not ask for his hearing aids or glasses, or for better placement in his chair if the position he's been placed in hurts. He has a strong tolerance for pain and was never one to make waves. It’s up to me to advocate with the care team to create a care plan that best meets his care needs, comfort and safety. Yet it is very difficult to be included in this process. We were granted a one-time opportunity to be involved in creating my father's care plan in 2018. Since then, my father’s condition has deteriorated and his needs have changed and yet there's been no further invitation to be included. It would be wonderful to be included in his care planning to ensure that not only the care team schedules and needs are met, but that my father’s needs are truly met and represented.

The advocate is vital: The advocate is a frontline person seeing what is happening with their loved one and how they are impacted by the chronic understaffing and inconsistent care of long-term care facilities. The advocate is another set of eyes on the possible negative effects, bravely sharing the details in order to protect the ones they love. Again, who else cares enough?

Who cares for our loved ones more than we do?

"The pandemic, among other things, exposed the fact that elders don't really have a voice, especially those in institutional care. Tens of thousands of people were placed in lockdown for months, ostensibly to protect them from infection. These sorts of draconian measures should never have been imposed without residents and families having a say. Advocacy groups fought these restrictions, but, as outsiders they had limited power. Residents' councils and family councils need to be empowered so their recommendations are implemented by managers and owners. Care homes are supposed to be homes, not prisons."

~ Neglected No More, book by André Picard