I never imagined the journey for a senior would be like this. The treatment of seniors and their struggles is overwhelming.

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My father Herbie is now 95 years old and after the years of disregarding our very real concerns about my Father’s care in the long-term care facility, we removed my Father from the system and brought him home to live with us.

 

However, I don't believe much has changed in the long-term care system and here is our story.  It was written when my father was still living in the LTC facility.  I have kept the blog live because I  feel the story is one shared and experienced by many family members and our story and voices should be heard.

 

My father has dementia, a hearing disability, and is unable to walk or care for himself.   He is unable to ask for help, not able to press a call button or pull the emergency string, unable to ask for what he needs or protect himself. Before Covid-19, I was personally involved in my father’s daily care, lovingly supporting his hearing disability and his mental and physical well-being. I have also been advocating for my elderly father both inside and outside his facility and it has been, overwhelming, concerning and at times, inhumane. I'm not alone in this, there are many family members advocating to exhaustion to offer their loved ones the best life possible at this time in their lives, but our voices of concern aren't heard. see the blog:

 

• Is the Elder Voice Heard?

 

I've been calling into question practices such as medicating, basic care, and care inconsistencies. For more on this, see the blogs:

 

•  Is This Adequate Basic Care?

•  Medicating — Is ‘As Needed’ Being Overused?

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I have repeatedly asked to be included in decisions made about and for my father and have been striving to maintain consistency for him. I have learned to be his caregiver, and before Covid-19, my husband and I were his consistent one-on-one caregivers within the facility because we felt his basic care needs were not being met and we had concerns. For more on what we discovered and what we did about it, see the blog entry, Family Caregiving & Care.

 

I am deeply disturbed by what I am witnessing with elder care, especially for those with dementia who are no longer able to communicate their needs and wishes — those who have lost their voices. My father has entrusted me with his voice, and I find myself trying to navigate through a system that, it appears to me, would prefer my silence. I’ve written myriad letters and emails calling a lot of issues into question, and it all feels like talking into the wind, care concerns never seem to get corrected. For more on what it feels like to be a family member on the inside of this swirl of systemic problems, wanting to ask hard questions and engage in hard conversations around the care and safety of a much-loved father, see the blog: Purple Dot — The Mark of Aggression.

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During Covid-19 isolation, I tried repeatedly to be granted ‘essential visitor’ status to help assist with his care—I promised to follow all PPE protocols – but I was continually denied.  I was told by the Patient Care Quality Office “there was an assessment undertaken by the responsible Care Leader and Occupational Therapist and your loved one does not have an essential need for visits. His care needs are being met by the care staff.”  How shocking it was for me to discover that the Care Leader with whom I shared my concerns with over the years about my fathers care, within the LTC facility, was apparently the one responsible for granting or denying my EV access.  I can’t help but believe my denial was retribution for advocating for my father. 

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"Seniors living in long-term care facilities who have an advocate or legal representative to oversee their health and personal care should NEVER have this right denied them.  Seniors cannot protect themselves; they need their advocate or legal representative.  No long-term care facility should have the right to remove this loving care and protection by denying family advocates the ability to carry out this care and legal duty of care."

— Herbie's daughter

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A little about us and the intentions of this blog ...

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In May of 2016 my father (Herbie) had a urinary tract infection (UTI) treated with antibiotics that went sideways quickly and he was hospitalized for two weeks. Within those two weeks my father’s independent-living lifestyle was changed — he was labelled with Dementia and Delirium — a common symptom of UTIs in the elderly. With that, my husband’s and my life changed too. Upon my father's returned from the hospital, he was incontinent and confused. It was a messy start for all of us as my husband and I began our steep learning curve on how to be caregivers and my father grappled with acceptance of being cared for. This new reality was shocking and tumultuous for all of us. Whatever my husband and I were feeling, Dad was feeling as well. He was scared, confused, and having difficulty accepting and understanding his new reality, as were we. My husband and I soon realized we had to find a loving way through this to make dad feel safe, loved, and protected while giving him breathing space to find his own way through. It is important for us that he feels he has a voice and feels heard. Thus, the reason for my writing his story. It’s been a huge struggle to keep his voice, his rights, and his humanness valued.

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My husband and I are still working and trying to keep up with our busy life and its rhythms, while caring and being caregivers for my father. Not an easy task. I never imagined my soul would be so deeply stirred that I would be compelled to write the blog "Herbie & Me", about our story and journey together.

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As I bear witness to the level of elder care, I find myself not only exhausted, but swallowed in fear that it may offend some people if I call into question their care practices and procedures. I'm deeply concerned that by speaking out I could affect, in a negative way, the dearly loved person I am trying to protect — my father.  But silence is not the answer.

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Let me be clear, this blog is a story about love. The love of a daughter who is grateful to have had a father who has "had my back" whenever I needed support. And now that he's at his most vulnerable, I've got his. It doesn't matter at all which facility my father is in as I suspect all facilities are struggling with the same issues of chronic understaffing. This blog is not intended to harm or be harmful to long-term care (LTC) facilities or the staff who work in these facilities. It is intended to share our experience in detail — one family’s experience trying to navigate, work with, and advocate for their loved one within a long term care facility that no doubt, like many others, struggles with:

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• The need for appropriate staffing levels

• The need for appropriate levels of training

• The need for accountability and oversight

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I’m afraid the above-needed supports are not going to be in place any time soon for our seniors living in long-term care facilities.  The excruciating pain imposed by the draconian measures to protect seniors from infection has been traumatizing for families, separating them and denying their vulnerable loved ones a voice at a time when it was needed the most should have never been imposed without residents and families having a say.

 

I feel it’s not ok that residents of LTC are housed in broken systems, inadequately cared for, and stripped of their human rights without residents and families having a voice, especially in this 'system' environment with elders that have health conditions that are extraordinarily fragile and complex.

 

I am deeply worried our vulnerable seniors living in long-term care facilities and this blog explains why.

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My intent is to shed the light of awareness on a painful truth — that those in long-term care facilities need help NOW. My plea is to stop dehumanizing elders.  There absolutely could have been a more humane way to care and protect our seniors through Covid-19.  For more on this see the blog entry: The Concerns with Covid-19.