MEMOIR: ENTANGLED

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ENTANGLED 1: CAUGHT BETWEEN CHOICES

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When Jen's mother, Darlene, vanished, the police didn't classify her as a "missing person." Jen's estranged father knew exactly where she was—but he was determined to keep Darlene and his own secrets well hidden.

Only one other person—Jen—knew her father's dark and destructive nature. As a child, she'd experienced his cruelty first-hand when her father tried to break her down, but his ruthlessness had the opposite effect: she blossomed into the type of strong woman he hated.

Jen flourished when she left her parental home, but her need to protect her fragile mother from her father's tyranny kept Jen returning to harm's way. Healthy choices seemed few and far between. With no one willing to help, would Jen's dogged loyalty to her mother cost both women their mental health? Or would Jen finally submit to her father's will and end her desperate search before discovering her mother's true fate?


THE FAMILY SAGA CONTINUES IN 2016
ENTANGLED 2: BETRAYED FROM WITHIN

Dan wasn't his wife, Darlene's, other half. He owned her. His domination took a toll when he treated both her and their only daughter as objects to toy with. Eventually Darlene became so debilitated from a mysterious illness that he had her locked up in a derelict institution. A hellhole from which Darlene wanted to escape.

After carefully crafting his "Mr. Benevolence" persona to impress Darlene's health care team, Dan refused to let their daughter, Jen, know anying—buttressing his actions behind all-powerful privacy legislation. Jen and her mother were at a complete loss as each of Darlene's rights were stripped away from her. When Jen sought answers, each hard-won revelation was worse than the next in a world gone morally askew.

Finally Jen had no choice but to confront her cruel father, the master manipulator. Jen thought a high-stakes court case would prevail and prevent the castastrophic loss of her mother. But then an even deadlier threat arose. Unfortunately, the solution was linked to her own father—a man who was motivated to hurt her the most.

My Motivation for DIAN

My introduction to the Dominantly Inherited Alzheimer’s Network, DIAN, was almost accidental. I learned about early-onset Alzheimer's disease during introduction seminars hosted by the Alzheimer's Outreach Program at London, Ontario's McCormick Home. This genetic—and highly inheritable—form of Alzheimer’s was mentioned, than dismissed as being exceptionally rare.

I took some comfort the words of Dr. Borrie, who was London's Alzheimer's expert. However, I had a problem.  My mother was rapidly succumbing to dementia, in her fifties, which made her a candidate for this rare form of early-onset Alzheimer's. In addition, my mother's eldest sister, who was also in her fifties, was deep in the throes of dementia. Two sisters struggling with dementia heightened my fears.

To ally my anxiety, my family doctor arranged a referral for me to visit Dr. Borrie's Aging Brain and Memory clinic. During Dr. Borrie's consultation, he decided that I should meet with a genetics counsellor. In parting, Dr. Borrie handed me information regarding the Dominantly Inherited Alzheimer's Network (DIAN) http://dian-info.org/ .

Later, I met with Genetics, and was dismayed when they confirmed that they were unable to do genetic testing for me--because I had no symptoms of memory loss--without the genetic confirmation of as Alzheimer's mutation in my mother. Mom's loved ones were unable to pursue their own healthcare without a confirmation of her health status.

Unfortunately, I was forbidden to have a confirmation of Mom's diagnosis because of my father's misuse of decision making law, bolstered by privacy law.  His motivation for withholding this valuable information was to use it for leverage against me in court. Although my father's orders were contrary to my mother's wishes, this occurred because the power of his decision making was stronger than my mother's ability to defend her human rights. The healthcare team followed my father's orders, not my mother's wishes.

My father stubbornly forbade mom's health care team from sharing information with Mom's loved ones.  His "privacy" restrictions were so severe that we were not to be told if mom was moved, became seriously ill or even if she died.

More about the situation regarding decision making and privacy is available on CBC’s White Coat, Black Art radio program. http://www.cbc.ca/whitecoat/blog/2011/01/07/patient-privacy/

Time elapsed until the expensive legal battle removed my father's abusive control of my mother.

Once I became my mother's court appointed decision maker, it took another three months for the lab to analyze mom's DNA for one of three known early onset Alzheimer's mutations:  APP, PS1 and PS2.  During that time, I hoped that my mom would have a treatable dementia. Doubt and despair ground holes into my optimism and resilience. Genetics has such a finality about it.

I had plenty of time and mental preparation prior to hearing my mother's genetic results.  Even so, I was flabbergasted by the result:  Mom was positive for the APP early onset Alzheimer’s Disease.

The implications of my mother's confirmed genetic disease took time to sink in.  My ironic fate was cast in conception. My 50% odds depended on whose gene I inherited: my adored mother’s defective gene or my estranged father’s safe gene. By the time I was aware of the genetic nature of my mom's dementia, I already had kindergarten age children of my own.  The thought of passing the defective gene onto my beautiful girls made me ill.

Armed with Dr. Borrie's information about DIAN, I made the first contact with the American-led world wide research study.  My Mom had talked to me about donating her organs to others and to science.  It seemed like a perfect progression for me to participate in the study, while honouring my mother's wishes.

Because the early onset Alzheimer's genes were so rare, DIAN desperately needed participants.  Participants were valuable because they provided the researchers with a glimpse of  "pure Alzheimer's," uncluttered by diseases associated with the elderly.  The researchers at DIAN are flexible to allow anyone who has a direct relative with a confirmed diagnosis to participate.  The best part about DIAN is that participants do not need to know their own mutation status.  It is the participant's choice to be informed of their genetic status.

The choice to learn one's genetic status is a very personal one.  Undoubtedly, life was easier before I had the dark cloud of Alzheimer’s hanging over me. But then the latent realist in me would torment me every time I forgot a name, or a grocery item… It would make me wonder... Is my forgetting actually Alzheimer's starting?

My goal driven and planning personality eventually prevailed. I made the decision to proceed with genetic testing. With a young family, I thought it would be prudent to make informed decisions about my future health.  I braced myself for another three month wait for my genetic results. I distracted myself with a cross country road trip, visiting relatives in the far flung corners of Canada.

It was thrilling to learn that I do not share my mother’s APP gene. Because I don't have it, my daughters are safe as well.  The mutation is dominantly inherited, which means it cannot skip generations.

In keeping my pledge to honor my mother, I engaged to participate in DIAN at their Boston location. I recognized the unique research opportunity that families who carry the gene possess. It was my first time being away for an extended period of time from my husband and girls. I do find it exciting that I can be a part of the solution for such a cruel disease.

Everyone I have met at DIAN has a very hopeful and optimistic attitude about a future without Alzheimer's.  I look forward to learning more through forums, webinars and participating in research. I am a willing advocate now. My motivation is not an accident.

Update about my Mother

After the public airing of my personal issues with my mom on CBC radio’s, White Coat Black Art, I learnt of the Ontario Consent and Capacity Board (OCCB).

I sent applications regarding my mother’s Substitute Decision Making. Since I was unfamiliar with the procedures and forms, I fumbled through an incorrect application prior to the correct forms and was able to arrange a hearing.

I went unrepresented to the OCCB’s Hearing, because I had already spent a great deal of money defending my mother’s basic human rights, and I felt the evidence I had was strong. It worked out in my favour that I did submit incorrect forms to the OCCB, because this triggered inappropriate slander and decisions by my father which illustrated the depth and consistency of his abusive behaviors.

The hearing lasted two days, and was difficult for me. It was a true David and Goliath situation. I am not a lawyer, and unaware of procedures and protocols. My fathers lawyer is recognized as being a top expert with regard to Consent and Capacity. Despite this major disadvantage, I was able to present my case, endure the cross examinations and have my problems heard by the OCCB, who had the authority to change Mom’s abusive situation.

The end result is that my father was removed as substitute decision maker and I was put in place for all personal care decisions for Mom. The decisions can be read at the OCCB case file HA 10 4596 and HA 10 4597. It was emotional to get the results. I was deeply sad that the process had taken me so much time, and my mother was now so ill. However I was deeply relieved that Mom would not become hidden to me again, and I could begin to search for some answers about what happened and is happening to her. I no longer have the stress of not being informed of my mothers well being (or passing). I sent out for medical testing as soon as I was able to for a confirmation of her diagnosis to make sure her treatment had been appropriate as well as enabling me to get the genetic tests done for the benefit of me and my daughters. Very Bittersweet.

My Secret is Out

August 2009: Mom is 52 years old in the photo

The CBC radio show White Coat Black Art, with Dr. Brian Goldman released Jan. 8, 2011 discussed the misuse of Privacy Law. Instead of being helpful, my mother and her loved ones suffered because Privacy Law.  The only person who was benefitting from the Privacy restrictions was my abusive father. Dr. Goldman's interview revealed a small piece of the abuse that has tainted my family for decades. Plus the role that Privacy played in my mother's demise.

Listen to the Podcast here:  http://www.cbc.ca/whitecoat/blog/2011/01/07/patient-privacy/

The root of the problem is that my father's legal power and control is stronger than my mother's ability to defend herself.  Privacy Law is merely the enabling mechanism--and in theory should be the easiest to correct.  However, the secrecy provided and protected by Privacy Law enabled my father to perpetuate abuse with impunity with no checks and balances.  Using my mother's case, I provided several perversions of Privacy Law:

Privacy Law allowed my father to shield his abusive actions from scrutiny.  The organizations and individuals who are mandated to protect and care my mother, instead blindly followed my father's abusive instructions.

Privacy Law allowed my mother to be moved to undisclosed locations so that she was isolated from her loved ones during her time of need.  My father treated my mother like a pawn in a shell game, moving her eight times between four institutions in one year, making it difficult for her loved ones to reunite with her.

Privacy Law prevented my mother from sharing her medical information with her loved ones--which was particularly cruel because my father claimed my mother's disease was genetic.  According to him, I was genetically fated to follow in my mother's dementia.  I was unable to pursue my own healthcare without a genetic confirmation of my mother's illness.  My father's  misuse of Privacy Law prevented my own healthcare autonomy.

Privacy Law caused my mother confusion and distress.  My mother had stated that she would willingly share information with her loved ones.  Her dignity was stripped when her health care team ignored her stated wishes in favour of my father's abusive instructions.

Dr. Goldman had followed up his interview on Privacy with the Privacy Commissioner of Ontario.  She claimed that my mother's issues were not a privacy issue but a decision making issue.  She refused to acknowledge the role that Privacy Law had in my mother's demise.  She refused to acknowledge that the Privacy Law was my father's shield.  Privacy Law provided the cloak of secrecy, preventing proper scrutiny of his actions.

The fact of the matter is that it would have only taken one person, who had access to the "private information" to stand up to my father, especially when his instructions were contrary to the Long Term Care Facility's Bill of Rights.

Allowing the power of the Bill or Rights legislation to override my father's improper use of Privacy Law would have gone a long way in solving my mother's and her loved ones' distress.

The big questions are which law is most powerful- decision making or human rights?

And what protections are in place when a law is being misused?

So, since the Privacy Commissioner shuffled the responsibility for my mother's abuse from Privacy Law to Decision Making Law, and let's pursue the solution she suggested:  Civil litigation.

In a time of heightened crisis, the option provided to my mom and her family was expensive civil litigation.  This is a solution that is described in the Globe and Mail as "legal fees exhausting their financial resources before they even reach a trial."
m.theglobeandmail.com/news/national/ontario-courts-only-open-to-the-rich-judge-warns/article12942343?service=mobile


So, to defend my mother's human rights, I needed to be willing to bankrupt my family.  It is a sham that the price to protect my mother's rights is prohibitively expensive.  The costs should be born by the abuser.

But the Privacy Commissioner did hit on the nerve of the issue.  It is undeniable that my mother has been emotionally, financially and psychologically abused by my father.  Unfortunately none of these acts are not considered a crime in Canada.  In fact, at every turn, it seemed the law seemed skewed to enable my father's abuse rather than protect my vulnerable mother's rights.  Because his acts are considered "civil" and not "criminal" wrongs, the costs to defend them are extracted from the victims.

In Canada, domestic abuse is considered a “family problem” unless there is physical harm ie. broken bones. It ignores the harm and pain caused by the abuse and isolation when the method is psychological and financial. Domestic abuse grows unchecked and unpunished all the time.  Domestic abuse flourishes under the watch of top administrators, similar to other historic human rights abuse issues. 

And yet, because his actions are hidden by the secrecy, provided by Privacy Law, it makes the only solution-- civil litigation--even more difficult.  A final irony is that my mother and her loved ones are denied from accessing information helpful for protecting her human rights.

Privacy Law creates quite the conundrum.

Maximum "Wow" with your Renovation

Secrets about Commercial Art- Murals and Paint Finishes

Here is a shocking fact: commerical art can influence whether a project looks impressive with 10% or less of the total renovation cost.

Now here is the key… It has to be professional art. We have all seen the proud DIYer who uses lavish materials to renovate and then slaps on a messy finish coat of paint, and makes the whole project look like it was completed in the dark by a teenager.

Humans are tactile and visual, so it is important to note that regardless of that expensive insulation or steel beam you installed, first impressions are built on what you see and feel. Commercial art realizes the tone for the success of the whole project. Often in less than three days, Muralfx can transform a room with a striking mural, or create the appearance of expensive wall or cabinet paint treatments for a small fraction of the total renovation costs.

Attention to detail, interesting colour combinations and quality of paint finishes can make a project look luxe. Muralfx returns to the values of craft and tradition when creating commercial art. So go ahead and treat yourself to the granite and designer fixtures, but remember to pay the same attention to the paint and finishes to complete your renovation with a “wow”.

Save your Money- Be Art Smart

I am going to let you into a little secret about gallery art...

Did you know that you can support local art by buying original paintings often with less money than designer art prints?

There is a wealth of local artists producing exquisite art struggling to get it to seen and purchased. You can buy inexpensive (read “mass produced”) prints, which will be on low quality paper and will likely fade and loose its lustre. You have to pay to get a high quality print. Often the cost is similar to what you can buy locally produced art by emerging artists. Emerging artists works are less expensive because they have not yet achieved the status of big city gallery representation. It is difficult to get a big city art dealer or gallery representation for a new artist. Most galleries are booked at least a year in advance for shows, and require that you have a full portfolio of 15 or more paintings for them to choose from. You see, large galleries have to spend money to sell the art as well. They invest and promote their selected artists.

So how can you discover this hidden art treasure? Buy direct from emerging artists. Local art galleries are more receptive to emerging artists, and you can discover artists before they achieve the big city representation later in their careers. You buy original locally produced art that looks like a million dollars, and only you and the artist will know about your deal.

Textured Paintings

Jen Romnes Artist Statement


My paintings are iconic landscape images. The medium I prefer to paint with is acrylics over wood in mid to large sizes. My technical style is heavy texture with saturated colour in layers. The layering makes my paintings hard to photograph, as this misses the three dimensional quality of the colour.

She is amazed at how beautiful nature can look when it is manufactured or as it is being degraded . The paintings capture nature’s struggles in a moment of beauty.

Although my paintings do have a sometimes serious underlying theme, it was important to capture the beauty and dignity of nature. I hope that collectors will love the paintings and develop relationships with them, and hopefully create their own memories of the snapshot of the landscape at that particular moment. Some environmentalists try to shock people with these horrible images of garbage, and destruction of nature, and I did not want to do that. I think when you shock people it perpetuates the idea of hopelessness, and it is important to me to leave a window of hope, and show how resilient nature can be and it is worth saving.


People don’t respond to abstract explanations of climate change. Jennifer’s paintings capture iconic images of Canadian landscapes exhibiting the effects of humans including climate change. It is amazing how anthropomorphic and beautiful nature can be as it is adapting to the sudden changes.







Web: www.muralfx.ca Email: muralfx@execulink.com Cell: 519-495-2721