Is the Elder Voice Heard?

Families have been entrusted by seniors to be their advocates, and they need us to be heard.

Here's why our voices are important:

With the news shining a light on the systemic problems in long-term care facilities and accredited professionals stating that these problems will take much time and money to resolve, why isn’t there greater concern for our most vulnerable being shut IN with these systemic problems? Is there a public perception that the systemic problems within long-term care facilities have magically been removed? Have the problems been tucked under the protection of Covid-19 and now shielded from view?  

In our experience there are some wonderful care aides with really good care abilities and practices, and if the care my father received had been similar to that of those wonderful care aides, you wouldn’t be reading this blog. But that’s not how it has been for my father. There has been so much inconsistency with care aides – so many new faces over the years with varying degrees of care practices and skills and a real problem with not enough staff and not enough eyes overseeing the whole situation. It's been heartbreaking and exasperating because so much of it is preventable. I have been his most constant caring person, looking after his personal care and his well-being for years. I was my father’s consistency-of-care in the facility as it struggled with recruitment and retention of staff. Staff don't have time to genuinely check in with family to ensure that physical needs are being addressed while the core values of the whole person are supported.

I have written countless letters and emails to the administration of the facility regarding my concerns about my father’s care and we have had meetings to discuss my concerns, but care concerns never seemed to get corrected and the staffing issues were still a challenge. My husband and I couldn’t bear the negative impact this all had on my father, so we took on more and more of his daily physical care and the results were verifiably positive. see blog photos in: Family Caregiving & Care.

Clearly, it's very important to keep long-term care facilities safe for our seniors and staff – I can assure you that I take Covid-19 and its control and prevention seriously – certainly no less seriously than any care aide or care team – in fact, I have more to lose. I have my beloved father to lose, and that I take most seriously. But, safety is not enough. I feel that it is equally important to ensure that the focus is not just on preventing the infection – we cannot disregard the importance of the physical, emotional, and mental well-being of our most vulnerable loved ones living in long-term care.  

Family visitors understand the need for masks, health checks and distancing. They are highly motivated and just as capable as health workers of ensuring that their loved one is kept safe.

I have asked the facility to include me in my father’s daily care during this uncertain and unprecedented time of Covid-19, promising to adhere to all procedures and agreeing to any and all testing required. My husband and I have gone so far as to isolate completely from all social interactions, not allowing anyone into our home, etc. We are happy to forgo my husband's help to comply with the one essential visitor allowed. I have been told that the only visitors permitted are for residents who are essentially “actively dying." I find this disturbing; my father is 94 years old. Is he not “actively dying” at 94?  If not seen as "actively dying”, is he seen as “actively living” at 94? What about those "actively living" needing additional physical care and support with disabilities and mental well-being? What has happened to the important principle of supporting value-of-life for our “actively living”? For those of us already concerned about our loved one’s care before Covid-19, this is alarming!​

Six months after the public health emergency was declared in B.C., many family members are still being denied Essential Visitor access to their loved ones or their access is restricted, even though provincial health policies clearly provide for their right to have that “essential” status. There are two defined categories of visitor access: Essential Visitor and Social Visitor. Essential visitors come into the residence regularly to look after one resident (patient), following the same safety precautions as staff. This allows families to be involved in the residents’ care again, as they were before COVID-19.

However, the responsibility for deciding who is an essential visitor is being left in the hands of individual care facilities. Although the policy assigning essential visitor status has been established, there remains a great deal of variability in the interpretation of 'essential' and arbitrary denial of the status. Care facilities can simply decide that a resident’s care needs are being met by staff and deem the family member not essential. This is wrong and a violation of the resident’s rights. I was denied and told my father's care needs are being met by care staff and deemed not essential. I disagree with their denial of my essential visitor access. I know that my father does need my care and support at this time.

On Vancouver Island, the only recourse for a family member denied essential visitor status is to ask for a review from the Patient Care Quality Office at Island Health. But the granting of Essential Visitor status is the responsibility of the individual long-term care facility and Island Health cannot reverse the denial. Even if your family advocate feels that your care needs are not being met, there is nothing that family advocate can do. We are helpless to help our loved ones and have no voice to disagree.

How can we advocate for our loved ones' care and safety during Covid-19?

For those of us already concerned about our loved ones' care before Covid-19, this is alarming! This also makes our responsibilities as outlined in our legal Representation Agreements impossible to carry out. This is wrong and unjust.

Many of us have watched our vulnerable elders rapidly decline during Covid-19 without family care, oversight and protection. Our concerns vary from an alarming decline in general health, increased falls, medication changes, concerns for hydration, infections, changes in their mental well-being or behaviour, confusion, profound loneliness, to concerns about their feelings of abandonment and feeling unloved.

The media is shining a light on systemic problems in long-term care facilities such as fragmentation, understaffing, inconsistent care practices and standards, and lack of oversight. Accredited professionals are stating that these problems will take much time and money to resolve. So why isn’t there greater concern for our most vulnerable elders being shut into these facilities with these systemic problems? 

It does appear as though long-term care facilities are not willing to acknowledge the systemic issues under their collective roof and choose instead to pretend that everything is OK. It seems contradictory for long-term care facilities to present themselves as meeting care needs, and supporting physical and mental well-being, while also requesting more money from our government to increase staffing levels and provide appropriate training and supports to meet their residents' needs.

Covid-19 may be part of our new reality for some time to come. It’s time to rethink the way “essential” visits are implemented.

Most residents in care homes live in single rooms, where a safe visit by family members caring for only one resident should be possible without undue risk to other residents or staff. Yet many long-term care facilities have not responded to the genuine concerns that families have about the impact this separation is having on their loved ones’ health and quality of life.

Quote near end of the Royal Society’s Report. We as a soiciety have a choice, “What choices are we willing to make so that none of us needs to fear the quality of life and care that may await us in a nursing home?”

How can Canadians help seniors currently in long-term care?

We are the family advocates for seniors currently living in long-term care facilities. The voices of family advocates have been silenced right at the time when our loved ones in care need us the most. Covid-19 is setting a precedent that we have never before experienced, creating an assault on the human rights of our seniors in long-term care. There are just too many issues and problems within the LTC system to revoke, remove, or deny a senior this right of care and oversight by their family advocate or legal representative.

Please help us to help them. We need your voice and your support, to protect our vulnerable seniors in LTC facilities.  We are petitioning that our health ministers do the following:

RESTORE the human right of seniors living in long-term care to access their family advocate or legal representative.

GRANT family advocates and legal representatives Essential Visitor status in a federally and provincially mandated process that is fair and transparent.

Covid-19 has been a challenge for everyone and has had consequences hard to foresee. But those of us caring for beloved family members in care could never have imagined this journey of overwhelming helplessness, voicelessness, and grief.  

Please help us, the family advocates, in creating a strong voice that returns residents’ human rights by giving them access to our care and oversight. By signing this petition, you are asking our provincial and federal ministers of health to protect this right from ever again being revoked, removed or denied. By your support, you not only help us help give a voice to our seniors in long-term care, you will be helping your future self should you find yourself living in a long-term care facility and needing your voice heard.

Thank you from Herbie & Me and all family advocates of seniors in long-term care.

“There is no substitute for the love and quality of care a loved one receives from his or her own family member. There is no other more powerful care, support, love or bond.”

— Herbie's daughter