Purple Dot — The Mark of Aggression

Is my father truly aggressive or is it understaffing and/or the lack of skills in redirecting?

Imagine my surprise upon seeing a Purple Dot on my father’s name card and on his door and being told that the Purple Dot is a sign of aggression. My father, for the first time in his life, at 91 years old, was marked as aggressive! I couldn’t believe it. “Aggressive” is truly not a word that would ever have been used to describe my father by anybody who has ever known him. For seven months prior to his arrival at what we thought of as the facility of our dreams, there was a huge change in my father's life. We had all felt as if we'd been living a nightmare of little stability or consistency with the home support service care provided. Some weeks we had 19 different care/support people.

Many working for the home support service had no skills, I felt, in caring for elders suffering with delirium and dementia. Many arrived rushing, trying to get my father to move quickly as the time allotted for my father's care also included their travel time to their next client. If Dad wasn't cooperative with rushing or moving quickly, they pulled at my father or began talking loudly, even sometimes yelling at him and being impatient with him when they were running out of time. Some of it was awful treatment. My father would curl up in his bed into the fetal position and cover his ears with his hands and ask them to go away. (But that's another blog.)

Having said this, there were some wonderful home support workers. The gentle, kind, and unhurried home support workers taught me and my husband many valuable care skills, which my father responded to positively, and we are grateful to those beautiful people. Then he moved into the long-term care facility and we were so relieved! Dad would finally have good consistent care and we would have peace of mind.

My Father's PURPLE DOT

Shortly after his arrival in the “facility of my dreams,” I was approached by the nurses informing me that Dad had been/was aggressive. They wanted my permission to give him an antipsychotic on an 'as needed' basis. (See the blog: Medicating - Is 'As Needed' Being Overused?)

I'm not saying that my father did not get confused, frustrated, stubborn, or wander into other’s rooms at times, or that there wasn't an incident or two (or three?) of nakedness in early 2017; however, I have not been informed of any incidents since. I suspect that this was a period of adjustment. The question I ask myself is this: was sedation truly needed or was this a matter of staff simply not being trained or skilled with redirecting? I feel this is a very important point as more and more seniors are suffering from dementia and Alzheimer's disease. There needs to be staff training to develop skills in redirecting residents towards reasonable behaviours, which take minutes, vs. sedation. Sedation takes hours to work its way through the body, while skillful redirection takes only a few minutes. How many care aides currently caring for dementia or Alzheimer's residents actually have training for dementia or Alzheimer's residents?

Truthfully, I don't know why my father still has a Purple Dot in 2020.

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My PURPLE DOT

I was told by a care aide that my visits were being noted in their book and there were whispers of my being 'passive-aggressive'. I found it interesting that there was time to record my visits in their book, but no time to record toileting and diaper changes. Is "passive-aggressive" the judgment used instead of "assertive or tenacious"? How many family members have felt this judgment?

Transparency and getting information from staff have been an indescribably tangled process. My questions were often met with a variety of responses such as: "I'm too busy", "I've got no time", “who can say”, “who knows”, “what shift, it's my colleague and they're on break,” etc. Getting to an answer requires being tenacious at following up, if you get an answer. Some questions don't receive an answer. It is exhausting! Not for the faint at heart and not a welcoming process.

If you have read my blogs Is This Adequate Basic Care? and Medicating - Is 'As Needed' Being Overused? you may understand my journey. Perhaps there are many family members on the same journey feeling the same. Trying to care for, protect and advocate for our loved ones is hard. There needs to be staff training to develop skills in redirecting residents towards reasonable behaviours, which take minutes, vs sedation.

It's been heartbreaking and exasperating to witness the inconsistencies negatively impacting my father. Heartbreaking and exasperating because so much of it is preventable.

Our intention has been to give my father the best possible senior years that we can, and it remains our commitment. But the journey has been fraught with advocating, worry, mistrust around inconsistent care and care practices, mistrust around medications and not being consulted or informed, trying to maintain some level of care consistency for him while still trying to create joyful, fun, and loving memories. The experience has felt traumatizing, yet filled with what I call stardust moments. Moments so meaningful, magical and moving, that my heart is forever changed by them and I am forever grateful for them.

We wouldn't change our decision to travel this journey alongside my father; caring, protecting, loving, and doing our best to honour a man who selflessly and cheerfully dedicated his whole life to others and that is deserving of the same in his last and most vulnerable years. We changed our lives to support my father in his final years and we are continuing our love and commitment. Ruminating about my rumbles with emotions of love, worry, disappointment, broken trust, grief, resentment, frustration, and wanting to protect is a lot to think about and try to make sense of.

SO, what did I do?

I went for professional counselling and sat in a comfortable chair with my binder of letters and emails, a new box of Kleenex close at hand, and I shared the whole story with my counsellor (who had also been my father's counsellor). I shared the letters ... the photos ... my concerns ...my worries ... my feelings of helplessness in trying to protect him ... my fears, feelings of resentment, and disappointment. I shared that I was feeling very alone and unsupported, and how my repeated concerns seemed to be falling on deaf ears and had resulted in a difficult place for me to be. Nothing had actually changed for my father with all the letters, emails and meetings; all the inconsistencies remained. The facility was adhering to their message of providing excellent care, yet I was questioning: is the care my father is receiving adequate basic care? Is this what basic care looks like for seniors who are not able to advocate and protect themselves? I couldn't pretend everything was OK when I distinctly felt — this is not OK.

My counsellor listened and then suggested that I keep doing what I was doing. It is important! And, it's not OK.

"There is no greater agony than bearing an untold story inside you."

~ Maya Angelou

It was that deep inner agony that prompted me to start writing Herbie & Me.

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Care Aide PURPLE DOT

Sometime in March or April of 2019 I was confronted by an angry care aide in the dining room area, who yelled at me in front of residents, the Licensed Practical Nurse (LPN), the co-care aide, and the resident student as I was discussing my father's safety with the LPN. It was then that I realized bringing forward issues of concern is not welcomed.

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The PURPLE DOT of FEAR

Asking questions about care practices affecting health and safety for our loved ones is hard! Does asking questions equate to perceived antagonism?

Nov. 21, 2019 Letter

“I feel that a different working group is needed to discuss and share the more difficult issues and concerns with those advocating for loved ones that cannot advocate for themselves.

The entire Care Team has built in support to discuss issues and family members, but I as a family member advocating for my loved one, I have no one to discuss difficult issues with, and it’s hard to get information or bring forward concerns for my loved one’s health & safety and quality of life.

I would like to suggest that there be a person, like an ombudsman or separate working group for residents and person(s) advocating for a resident, to be able to bring forward issues of health, safety and concerns in an open way that doesn't create an adversarial environment for the resident or person(s) advocating for the resident.

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 rather be met with resistance, defensiveness, contempt and anger and affect the resident’s quality of care.  Because of this, advocates might remain silent rather than share information that could benefit the facility and its residents.

My father is unable to advocate for himself.  For example, he does not realize he has a button to press for help, nor does he ever ask for help. He has a strong tolerance for pain and doesn’t like to make waves.  Because of this it’s up to me and the care team to create a Care Plan that best meets his needs for comfort and safety.  I have found that working with a care team that welcomes family in a more inclusive manner, sharing information about dad, works amazingly well and my father benefits greatly.

I have experienced firsthand that advocating is not always welcomed:  One Thursday morning (end of March/early April, 2019), when I brought forward a safety concern that was written on my father’s Care Plan placard, I was confronted by an angry care aid in the dining room area and yelled at in front of all the residents, the LPN, the co-care aide and the resident student.  Also, after that incident, I was told by another care aid that she was angry with me over a photo I had sent to a care leader that she was questioned on.  She was defensive and upset.  She mentioned that she didn’t know what would become of the wing where my father resides (implied she may be leaving) and felt sorry for its residents.  She was not open to dialogue about my father’s care and my worry.

It appears that an adversarial relationship has been created by my undertaking to advocate for my father’s care and safety.  Yet, when I look back, I feel I have never brought forward unreasonable issues.  I now fear for my father’s quality of care in an environment that is angry with me for my efforts on his behalf.

This institution is ultimately about serving its residents and it is also learning and teaching environment.  If residents’ advocates are afraid to voice concerns of health and safety as I am now, what will be missed by the silence or silencing of the advocates?  What valuable information or better idea will be unspoken in this learning and teaching environment that could better serve all residents?   What level-of-normal will be adapted with care and respect of residents or advocates if their issues of concern are not valued when they are voiced?  If an advocate or resident is not comfortable with calling into question some practices or issues of health and safety, who is?  Is the appointed advocate not appointed for the very purpose of being that voice?

It is my opinion that feedback from residents or advocates is vital to making this facility inclusive.  Feedback is a function of respect.  A family or advocate voice is important.

I would like to propose a person or environment where a resident or an advocate brave enough to come forward with concerns, can be met with support and openness, in an environment that promotes effective communication and respect.  Working together in identifying and following through on difficult issues.

My observation of the residents is that FAMILY is most important to them.  I ask that a working group be created to engage with FAMILY or residents with honest conversations about medications, care, and safety and to promote/enhance their quality of life, which in turn, benefits all residents.

Thank you.

Herbie’s daughter”

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January 22, 2020 meeting

There were two family members present at the meeting, bringing forward the concern and intention:

Concern

We feel at the moment that there isn’t a welcoming forum, support group or environment for collaborative dialogue as mentioned in my Nov. 21st, 2019 email, in advocating for our loved ones.

Intention

To create a Forum, Support Group, or Environment to voice concerns, issues and compliments. An environment that promotes collaborative dialogue, effective communication, support, openness and respect. Working together with the facility to find a common understanding or a shared solution in identifying and following through on issues, to ensure adequate care in an open and collaborative relationship. We feel that families have a unique perspective and providing input to the facility is of most value when the focus is on what families are observing and experiencing, as per the facility Handbook - “We take your concerns and recommendations seriously”.

A solution - "What is possible?"

Outcome

It was felt that a separate group or environment was not required. We were told that some solution, would be created. Then the Covid-19 pandemic arrived.

The Hard Questions and Conversations

Here are the hard questions I have been wanting to ask, but never felt safe asking, in hopes of starting an honest conversation about long-term care facilities:

Questions

• When a family member brings forward a repeated request for an answer to why an antidepressant has been prescribed without the family member being informed, consulted or giving consent, why is an answer not given?

• When a family member brings forward repeated skincare concerns, such as the skin not being cleaned before a new diaper is applied, why is this a concern not addressed as a skincare practice that needs attention, oversight and consistency?

• Why when a family member brings forward repeated concerns of believing urine is having a negative effect on skin and causing discomfort, itching, pain, and at times risk of infection.  Are concerns not addressed as a skincare practice that needs attention, oversight and consistency?

• Why when a family member brings forward repeated concerns, is this not an indication that certain practices may require investigation, oversight and consistency?

• My father's sensor was disabled on September 17, 2017. This is worrisome. Why would any sensor be disabled at night in a resident's room? Is this not what alerts staff to the resident being on the move, or another resident being in the room? Why are sensors disarmed at night?

Conversation

• After years of letters, emails, meetings and discussions about repeats negative effects, I felt there needed to be a place to have an honest conversation about the inconsistencies of care practices and how the correspondence created a pattern of information gathered. Perhaps something of value could be learned here?

"Insanity is doing the same thing over and over and expecting different results.”

~ Albert Einstein

The PURPLE DOT of DENIAL

I feel nothing is going to change with regard to the repeated care concerns and inconsistencies that have been creating preventable negative effects for my father (some mentioned within my blogs) unless all long-term care facilities are willing to admit that they too, harbour some of those same systemic issues exposed by Covid-19 and drawn out into the public eye. It’s so important that these systemic issues be acknowledged, especially for those with dementia and those requiring additional care. For more on this, see the blog: The Concerns with Covid-19.