A Caregiver Fallacy

I was blessed to be apart of the majority of learning/educational Passover last night, with the songs, the food, the stories, traditions and contemplative questions. As I reflected I began to build out in my mind and heart that we tend to misunderstand burden. The concept of release from burden when one is a caregiver sets us up to have interrupted or repressed grieving. For those unaware unprocessed grief can create the same mental, emotional and physiological responses as PTSD, even a misdiagnosis and mistreatement.

Why is this in mind? Well, I have played a role as caregiver with other relatives like my Mum and Dad, with various relatives. Though in the moments, and at that time in history it was and is being family. Though over time and even then, when the caring ended, as the loved one transitioned to the next adventure (as we would explain to my kids, the great tea party), some things always perplexed or landed wrong.

Yes it was emotionally draining, rolling with emotions and new experiences. Seeing my loved Granddad struggle physically with his emphysema. My Nan, who began to see the effects of dementia. My Granmda with her falls, and then in hospital in the last days where her mind had regressed to a point in time in history where I was no born, so I was either my uncle or cousin, but I still got to have time with her and show her love. With each of them. With my Mum as she journeyed towards the end with breast cancer, and her own mental health struggles. Same thing, it was hard emotionally.

But then the phrase, the essence being, “while isn’t it wonderful it is over” or “think of how much better things will be now”. Sentiments echoed with my own son.

Yet, NO.

It was time spent. It was time together. Yes, if our society did not have systemic issues of emotional constipation around chronic conditions. Emotional phobia of death. Perhaps these journeys would be more supportive by all. If our governments did not see citizens as the enemy and fight against supports or enforce constant cycles of advocacy to prove personhood… Yeah, caregiving is hard emotionally but it is being family. What breaks one’s spirit, heart and yes body, is the constant fighting with the world crafted by those elected that do no see the one with the chronic condition as person. That is the true draining.

And then because we are to see this work of caregiving (not the advocacy and systemic “isms” and prejudices as the burden) we are to be gladdened when the life is lost and grieving should be nicely wrapped up as the employer dictactes (no longer than 3 paid days if in Calgary, or 5 outside of town), and it better fit the description human resources provides as kin, God help you (and yes that is intentional, not blasphemous) if you family functions differently.

So as I reflect on my journey of family, as caregiver, my own chronic conditions. The support and story of loss, and what is reflected. I know the release, of unrepressed grieving. Of letting the tears flow anew, to understand that the burden was not the caring, and time with the loved one. The burden is what our systems create for proper care and support of professionals and ensuring those systems are properly equipped.

I encourage the caregivers, the personal ones, let us raise our voices. Let us push for proper caregivers allowances to reduce the systemic burden, to allow for our time with loved ones to exist so we can continue to care and together thrive.

Let us raise our voices for government to get out of the meta-fallacy-myth that citizens are out to defraud the system, and use the fact checker of the CRA at the end so that thriving can happen for those we care for.

Let us raise our voices, and stop the politicos and the populists and the anger mob from shaping the faux ballot box questions and direclty speak to those running and not accept the non answer anymore.

Let us raise our voices, and admit the burden that is being released in loss is constantly fighting for our loved ones to be seen as person.

Let us raise our voices, and celebrate the extra time we have had.

Let us raise our voices, and let the tears come,

for our friends lost.

And know, it is okay.

Dying with Dignity: The Alzheimer’s-Dementia Enigma

Okay up first is a disclaimer: I am over joyed with the passing of the dying with dignity law of the current Canadian Government. I do believe all living things should have the right to transition into the next life with dignity. But even though I am happy we have reached this ethical milestone, we shalt not plateau.

This brings up the next question, the  idea of an advance directive that the government shied away from, but the Supreme  Court of Canada laid out was necessary.

See, for the physiological entrapping diseases (Multiple Sclerosis; Parkinsons and the ilk) it is apparent that the brain is trapped within a body that does not function anymore and at some point when of sound mind the individual now has a route to maintaining their life with dignity.

The challenge is for the neurological diseases that do not fit the parameters of the law: Alzheimer’s; Dementia; and their kind.

First two statements as an ethicist and holistic psychologist:

1) I am not going to entertain the fallacy of the slippery slope argument around this.

2) There shalt be no reference to “holocaust” or “Nazi” or Murderer whether you support or not the position.

Read, process, sit with and craft a belief in yourself for what you believe around it and more importantly why you believe it. For myself, this understanding has come from the lived journey of chaplain, caregiver and family member.

I have walked with those in long-term/lock down care who have had these diseases slowly eating away their memories.

Some would say that is not a bad thing and how can we say they are not enjoying life. Simple, what we know is the person in the beginning is aware of the loss, and the confusion. We do not know as the journey progresses if the awareness stays, or not, or if shame drives the silence, but what is experienced:

1. I have walked into lock down with adults in their 50-90’s crying and feeling that their families have abandoned them, or they have been kidnapped because they have regressed into their childhood.
2. I have been in shelter’s with those who have been lost within the system or under a bridge or rough camp because they no longer know who they are, but paranoia has gripped them in the piece of their history they are living in and will not accept help.
3. I have witnessed the self harm to break out as they try to compute why they are alone.
4. I have slowly watched as a grandparent has lost the idea that their grandchildren exist and slowly enter into the reality that their children begin to fade.
5. The conversations when you are not aware of which decade you are in with them, or which relative they believe you are.
6. The most peaceful human being switching into a homicidal rage addict.
7. The neurological regression that can cause physiological impediments as their muscle memories regress to younger years—even toddler years, then think of a senior falling like a toddler would learning to walk, or not knowing their own physical limitations and refusing to use the assist technology of cane, wheel chair or walker. Sadly with this regression, or a blessing the fall can lead to transition…and end to the psychological/emotional pain they are walking through.

So while we debate, and enter into the hard questions of life. Especially a life that can be unnaturally extended due to medical science keeping the physical life alive.

What happens when the very identity of you ceases to be? We are not independent entities whose self is crafted in a vacuum.

We are interdependent, communal beings with holistic life histories that are shared with others…so when you no longer have that connection/memory with the other are you still you?

That is, when the neurological illness has destroyed the identity, much like when the physical has left you only on life support; are you still a person? Are you still you?

Do you deserve the write to pre-state at what point you are no longer a you?

Dying with Dignity Canada Voice Your Choice click here.

I do not look for all to share my view, this has come through personal tears, pain and loss even before the medically signed off transition…in my mind the soul transitioned long ago within my family and friends that walked this path.

But the question is—what is your choice? Where will your voice be heard?

Decompression Ruminations

It has been a unique and stressful last 6 months in my family. We have taken a journey that happens with children with special needs, and understanding what is linked to Cerebral Palsy and epilepsy, worst case scenarios for neurosurgery or SUDEP, to have the Universe bless us at the light at the end of the tunnel for the spells to not be seizures, but rather Attention Deficit that there was 3 options for treating: do nothing, Ritalin, or a mild natural stimulant (coffee, a cuppa in the morning to re-align the brain properly) until he outgrows.

This leads me to ponder more into our world, and my specialty of holistic psychology, and health. Think about it. We are a new world in the 21st century that due to technology has removed activity of the conscious and subconscious mind. We are without routine, that allows for times of activity, times of relaxation and a structured day. This is a recent development, even when I was a kid I remember coffee and/or tea time depending on the family that we were with. I remember playing outside, reading and watching television, a structures school day, where we learned structured sports, rules, and how to be a participant in society as a healthy citizen.

yes I was part of the generation on the cusp of mass attention issues and drugging, yet it has exploded as a cottage industry for Big Pharma, that in a majority (not saying all, as sometimes pharmaceuticals are needed) could be corrected by a different paced life style that allows for proper activity, rest, and yes natural stimulants.

End Rumination 1.

Rumination 2

begins with the Dying with Dignity laws, and rumours coming out of Ottawa. I can understand why they are looking at the person seeking this needs to be an adult deemed competent. Unfortunately this removes dying with dignity from a section of the adult population who will be ravaged by dementia and Alzheimer’s. Makes me wonder what role Personal Directives will take prior to these diagnosis to ensure legally wishes can be respected.

End Rumination 2.

Rumination 3

ties into Pope Francis’ address on family, birth control and same-sex unions. The “well-duh” moment if you will for Catholics in that the clerics are basically said be like Christ, and the faithful are told to follow their conscience and what they have been taught. For the ultra-conservative Catholics though the Irony of believing the Pope Infallible, yet that the Pope is wrong on this.

End Rumination 3.

Rumination 4

Tom Mulcair as the NDP leader, and his review starting up this weekend at the convention in Edmonton. The cracks in the party are showing with the Alberta Governing NDP and membership up in arms over the Federal wing’s stance on fossil fuels, and a major driving point of Alberta’s economy (oil) now in recession. Will it shatter the “solidarity” of the party that one membership encompasses both federal and provincial parties? Or is it just good sound bit media to aid a government under attack by the Right?

Also will Mulcair the man who decided to play safe, and fight for the centre instead of going for broke in Canada’s historic socialism thus loosing the “Official Opposition” position, and possibly the Federal Government to be reduced once more to the “Conscience of Parliament” survive his leadership review?  As a former candidate and member I for one would love for the ravenous socialists with economic sense to once more be running the party.

End Rumination 4

Rumination 5

Through the practice of simplicity every so often I give away things. This year’s spring cleaning saw some comic books/graphic novels go to an affordable housing program we support. It was great to see how people of all ages and backgrounds were brought back to a safe memory time by picking up comics and spending time reading.

There is much to be said, and Joseph Campbell has written a lot about meta-narratives; and Carl Jung on archetypes, but truly the comic book is this for the 20th-21st century, a bonding story much like the gods and heroes of mythology in the ancient world.

End Rumination 5.

Rumination 6

How much of an overproduction marketing machine is Disney when much of their graphic novels and toys from Disney, Marvel and Star Wars winds up a Dollarama. Not complaining as it has been great to pick up graphic novels for cheaper than a monthly comic ($3 each) whoo hoo.

End Rumination 6.

So yes just some time to exhale, decompress, let the stress leave the body and monitor how this bundle of energy affected one throughout the time with down days of sickness for no reason, but even in the glow of a blessing how it still takes time for the mind, body, and soul to recover fully when you leave the heightened state.

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