the path ahead

What If … ?

Written by Ron Posno – a person with dementia

Everyone asks this question of themselves, their parents, friends, spouse … anyone who’s close enough to care.   Sometimes it’s frivolous;   sometimes it’s speculative;   and, sometimes it’s just plain, absolutely necessary.   For people with dementia – like everyone – it can be all those things and … painful, sad, and unavoidable.

It starts with diagnosis and continues through every progressive stage of debilitation to an end-of-life which may be anticipated, but never known until it evolves.

Scary!   Yes, but it can be dealt with.   The diagnosis need not be the end:   it can be the beginning of creating a new life of caring and compassion;   of finding new strength and joy in living each and every day … even if you have dementia.

Let’s consider two real stories:   Ronnie Reagan from California and Gus (Anybody*) from Ontario.

*   Name has been changed upon request of the family.

Ronnie Reagan was an American politician and actor who served as the 40th President of the United States from 1981 to 1989.   Prior to the presidency, he was a Hollywood actor and trade union leader before serving as the 33rd Governor of California from 1967 to 1975.    Dubbed the Great Communicator, the affable Reagan became a popular two-term president.   He cut taxes, increased defence spending, negotiated a nuclear arms reduction agreement with the Soviets and is credited with helping to bring a quicker end to the Cold War.   It was not generally known, but Ronnie Reagan was diagnosed with MCI(Mild Cognitive Impairments) early in his first term as president.   His MCI later evolved into Alzheimer’s – one of 13 forms of dementia.

Reagan is still remembered as one of (if not the only) the great Presidents.   And most of what he accomplished as President, he did as a person with dementia.   Having MCI (and later Alzheimer’s) did not stop him.   Surely he had help, but foremost he was cared for and supported with love and knowledgeable people who helped him deal with the tough personal and political decisions of the day.   He approached everything with grace, civility and a self-effacing sense of humour.   One of his most telling moments was just after his assassination attempt – while lying on the pavement in the arms of his wife, he said, “Sorry Nancy, I forgot to duck.”

Gus Anybody from Ontario is now(not history) and he represents most of us – ordinary, hard working, and relatively, unknown Canadians.   He was diagnosed with Alzheimer’s about five years ago.   He didn’t know what to do;   his family did not know and Gus struggled.   He was retired but he liked to work in his workshop and visit with his friends at Tim Horton’s and the Legion.   He couldn’t tell them he was losing his mind and as he withdrew from his friends, he lashed out at his family.   They were hurt and confused by this man who used to be an affable, loving parent.

Last month, in the wee hours of the morning, he committed suicide by jumping into the Detroit River.   His daughter, who was attempting to be a care-provider, couldn’t find her dad.   Gus had talked about it so she believed he’d “done it.”   She and her family, stifled with fears and guilt, began combing the shore and rocks downstream.   For ten days they struggled with the cold and freezing rain.   The police finally convinced them to quit.   His body may be found sometime after the winter.

Ron and Gus:   two different people with dementia with very different consequences.   It wasn’t the time difference, it’s entirely the difference in understanding and support.

Ron Regan, right from the moment of diagnosis was accepted and supported with love and active counsel in pursuing his abilities and interests.   As his dementia progressed, he was taught how to cope by focussing on what he could do and not wasting his last few active moments by fretting and worrying about what he could do no longer.   He didn’t hide.   His family, his friends remained close and shared the triumphs of his last days.

Did Ron Reagan fail .. absolutely.   The entire nature of dementia is a series of progressive failures.   But as Ronnie failed, he could cry but not for long.   His supporters grieved with him and then pushed him with all kinds of love, into the next step of doing something that was possible.   His failures were quickly forgotten(a real benefit of dementia) in his efforts of taking the next, real step.   Life with dementia can be marked with more laughter and smiles than tears of defeat and failure.   It all depends upon support .. and that’s not a matter of wealth.   In fact, there’s often more love and support in poorer families than wealthy families.

Gus did not have wealth in a measure of dollars, but he was not poor.   He had a livable pension and he had a family.   A family like most with differences of love and abilities;   a family who thought they knew “dad.”

Gus’s diagnosis changed everything.   He didn’t know who he was and feared what he was going to become.   His family didn’t know much more and they feared what was going to happen to dad.   Gus was adamant, “I’m not going to some “gd nursing home.”   And he retired into his workshop.   He couldn’t tell his buddies at Tim Horton’s or the Legion that he was “losing his f*****g mind,” and as his frustrations increased in his workshop, he came into his home and flailed at his family.

He started wandering the streets at night.   “I don’t want to see nobody.”   After five years of pain and all the agonies of fear, he told his daughter, “I’m going to do it.   I’m going to commit suicide.”   And he did, in the wee hours of a cold November morning, he crawled over the walkway railing into the river.

Now what if … Gus was properly advised and supported at time of diagnosis.   Does his hometown have the supportive resources available to counsel Gus and his family through all the stages of dementia?   It should.   Could his family be supported and counselled?   It should.   Are there acceptable alternatives for living with dementia in his hometown?   There should.   Did Gus get the help he should have had?   No!   Was Gus vulnerable … yes!

Can all people with dementia reach an end-of-life like Ronnie Reagan?   No, because every case is different;   every person is different;  and not everyone wants to deal with some of the more egregious aspects of late stage progression.   There are many people like Ronnie and Gus who are well supported and live relatively good lives until that last stage.   Then it becomes more than they can handle and more than their loving and supportive families can handle.   What then?

In Canada, the Supreme Court ruled(Carson 2015), “ … to avoid intolerable suffering against their wishes … a new law must be created to establish choice in dying as a right for all Canadians.”   Consequently, In June, 2016 MAID(Medical Assistance In Dying) was legislated by the Government of Canada.   It supports many people driven into intolerable circumstances, but … from misplaced fears to “protect the vulnerable”,  it was designed to exclude people with dementia.   Bad law doesn’t protect the vulnerable.   Support and counsel protect the vulnerable.

What if … MAID was changed.   Suppose people with dementia, by means of an Advance Request – prepared while they are still cogent and fluent – could access MAID at a time of their specified request.   Gus’s family was ready to provide all the supports that were outlined above and Gus may still have wanted suicide.   If he knew he could “go” when he wanted, would he have been relieved of the basic worry of all people with dementia – last stage discomfort, ignominy and shame?   For sure.   If he didn’t need to worry, would he participate more?   Absolutely.   If Gus was actively and positively participating in activities, would his family feel relieved and enabled to provide more love?   Absolutely!

MAID need not be considered as a negative.   It can help people.   Not everyone need choose MAID, but if it’s available and accessible, then many people with dementia could lead a richer and more fulfilling life … right to the end.

What if … every Canadian with dementia could access all the rights afforded by the Charter?

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.