SEOL CARE Special End of Life Care for People with a Disability

If you reside in Halton, this is newsworthy .

The Burlington Ontario Health Team is excited to announce the launch of the Burlington Integrated Palliative Care Outreach Team (IPCOT)!

The Burlington IPCOT is a collaboration between multiple organizations that work together as an interprofessional team to deliver integrated palliative care in home.

This partnership between Ontario Health atHome, Carpenter Hospice, HOPE, and the BOHT brings together a team of specialist palliative providers, which includes a Nurse Practitioner, Psychosocial Spiritual and Bereavement Clinician, Physician, and System Navigator.

Visit our website for more information ➡ https://www.burlingtonoht.ca/burlington-integrated-palliative-care-outreach-team/

Worth your time

Registration is open for our next webinar! Speaker: Susanna Mierau

Wednesday, September 11, 2024, 7-8.15pm ET
𝗧𝗼𝗽𝗶𝗰: 𝗔𝗰𝗰𝗲𝘀𝘀 𝗕𝗮𝗿𝗿𝗶𝗲𝗿𝘀 𝘁𝗼 𝗠𝗲𝗱𝗶𝗰𝗮𝗹 𝗖𝗮𝗿𝗲 - 𝗪𝗼𝘂𝗹𝗱 𝘆𝗼𝘂 𝘁𝗿𝗲𝗮𝘁 𝗮 𝗯𝗿𝗼𝗸𝗲𝗻 𝘁𝗼𝗼𝘁𝗵 𝘄𝗶𝘁𝗵 𝗔𝗯𝗶𝗹𝗶𝗳𝘆?
Live Q&A included. All NCSA webinars are free. Pre-registration is required.

Please register here: https://us06web.zoom.us/webinar/register/WN_EjTcWPjRQYKV8eE1-274kg

The talk focuses on the challenges limited verbal or non-verbal adults with autism spectrum disorder (ASD) face getting access to medical care and strategies for addressing these needs in our community. A recent study of over 1500 adults with ASD in the Kaiser medical system revealed that nearly all medical conditions are more common in people with ASD than age- and sex-matched controls (Croen et al., 2015). Yet limited verbal or nonspeaking adults with ASD can have difficulty getting the standard of care even for common conditions in adult medical facilities. Dr. Mierau will discuss these challenges and strategies for providing adult services to this highly vulnerable patient population. This talk will focus on using a neurology lens to understand more about the brain areas that can be affected in autism spectrum disorder (ASD) and how this alters communication styles. Following this session, participants will be able to:
--identify challenges adults with ASD and limited communication skills face in getting medical care.
--discuss behavior as a form of communication in limited verbal or nonspeaking adults with ASD and the role altered sensory perception may play in behavior.
--discuss strategies for improving access and quality of medical care for limited verbal or nonspeaking adults with ASD in our communities.

A tool to consider....

RecordMeNow – free legacy app Record Me Now, the not-for-profit legacy app The RecordMeNow App lets you make a lasting video legacy for yourself, your family and loved ones. It is also good for life review. The app is question-prompting and video-recording. It is non-denominational, private and free. We made it because it needed...

The exact conversation our FAMILIES and our SERVICE PROVIDERS are to begin having ....

SEOL CARE is immersed in the disability community and starts these essential conversations...

When I am dying. When I am dying, I don’t want the last sounds I hear to be machines beeping and alarms going off telling me what I already know, which is that my body is shutting down and I am dying. I don’t want machines keeping me alive.I don’t want machines feeding me.I don’t want to feel the suffocation...

Legacy Projects:

Memorial benches are a great way to remember loved ones for generations to come. Placing a bench at a loved one's favourite viewpoint or resting place

https://www.loveliveson.com/memorial-trees-canada/
https://www.legacybench.ca/Memorial-Benches.html

Give A Mile is a non-profit organization that gifts free flights to bring loved ones to the bedside of an end-of-life adult, child or infant who cannot afford the flight. The organization can also repatriate patients to their province, state or country of origin for end-of-life care.

Flights must originate in or have a destination of Canada or the United States but can be to or from anywhere in the world. More information is available at [email protected].

https://giveamile.org/

𝐃𝐨𝐮𝐥𝐚-𝐢𝐧𝐠:
The act of educating, respecting, caring, empowering, listening, embracing, loving, advocating for and assisting

A leaf has much to teach us.

SOME FUNCTIONS OF A LEAF

To whisper. To applaud the wind
and hide the Hermit thrush.
To catch the light
and work the humble spell of photosynthesis
(excuse me, sir, if I might have one word)
by which it's changed to wood.
To wait
willing to feed
and be food.

To die with style:
as the tree retreats inside itself,
shutting off the valves at its
extremities
to starve in Technicolor, then
having served two hours in a children's leaf pile, slowly
stir its vitamins into the earth.

To be the artist of mortality.

-Don McKay

Our disability community requires a disability informed approach to the palliative care needs of those with a disability....

Palliative care can't wait: what I wish I'd known as my wife was dying - Healthy Debate My wife Suzanne had done everything she could to prepare for her death. But without access to palliative care, we were not prepared for her final days.

The University of Alberta is hosting a free Zoom Health Ethics Symposium on November 21, 2024 about "Disability Ethics: Within and Beyond a Canadian Context."

Disability Ethics challenges traditional societal conceptions around normalcy and ability not only to ensure the rights of people with disabilities are upheld, but also so society benefits from the knowledge, insights, and other contributions of individuals living with disabilities.

The target audience for this symposium is broad and people with disabilities and familiy members are encouraged to consider attending. Note: pre-registration is required.

More information and registration can be found here: https://www.ualberta.ca/en/john-dossetor-health-ethics-centre/events/health-ethics-symposia/health-ethics-symposium-2024.html

Welcomed Words of wisdom

See the person, not just the illness, distinguished physician urges new medical students To truly care for patients, you must recognize them as whole persons and not reduce them to their medical profiles, an expert on dignity in health care told UM’s newest class of future doctors. “S

SEOL CARE believes firmly in the power of advocacy. More importantly in being a fierce health care/patient advocate during end of life support for people with a disability..

SEOL CARE educates the individual/ the family / the service provider on the art of health /patient advocacy.

THE ESSENCE OF SEOL CARE IS EXACTLY THAT

TO CARE.....

SEOL CARE provides disability informed end of life support to people with a disability, families and service providers of the disability community .

SEOL CARE also presents ,educates about 3 key topics
1st Basic DISABILITY awareness
2 nd Disability Informed End of Life support
3 rd Disability Informed Grief Support

SEOL CARE educates and presents to a varied audience audience from the funeral service industry , the bereavement and death care communities. As well as the disability community .

For specific information or for any questions reach out to SEOL CARE www.seolcare.ca

Doulas at the end of life “The individual who has received the diagnosis has entered the experience of the last days of their life, and that is a daunting task. Fortunately, an ancient profession has become new again.…

PRE PLANNING are common words, PRE PLANNING for end of life are words that have yet to become common....
within our disability
communities...PRE PLANNING FOR END OF LIFE continues to be unmentionable...

CHANGING THAT MATTERS..SEOL CARE EDUCATES, PRESENTS AND WRITES ABOUT

DISABILITY INFORMED PRE PLANNING FOR FAMILIES AND SERVICE PROVIDERS.

PRE PLANNING

PRE-ARRANGEMENTS

The primary advantages of pre-arranging your funeral wishes are to relieve the emotional and/or financial burden on your loved ones at a time of death, to ensure your wishes are carried out as you want them to be and to lock in costs at the time of arrangement. Prearrangements are also transferrable from funeral home to funeral home for whatever reason, whether you have moved too far away or you have simply decided to use another provider. All you need do is talk to the new funeral home you’ve chosen and they will instigate the transfer on your behalf. No money is lost and it may be cancelled at any time.

Pre-planning and/or pre-paying your funeral is one of the most thoughtful gifts you can give to your family.

There are two types of formal preparation when it comes to your final affairs:

1. A pre-discussed arrangement without payment(s) or
2. A pre-discussed arrangement with payment(s).

The pre-discussion part means that your wishes are documented at the funeral home in order to carry those wishes out when the time comes, along with all of the important information needed to do the government paperwork that Rutherford Cremation & Funeral Services does on your behalf. A file with your wishes and the vital information is kept at the funeral home and that may be all that is done. This is simply called a “pre-discussion.”

The pre-payment part means that those pre-discussed plans have been fully paid for or are being paid in installments, as you see fit. Installments may be made at regular monthly intervals or on a notification basis by simply calling the funeral home when you would like a payment to be withdrawn from your account. The money does not go to the funeral home at this time. Pre-paying means that the money is held in an interest-bearing account (usually within a depository that is specific to the funeral industry) and will gain interest over time, so that there will be more money when you die than what you initially put into it. The interest earned is often better than a bank will give you and any money that is left over after the funeral is paid for, goes back to your estate for family or friends.

WHY DO I NEED INTEREST ACCRUED ON MY PRE-PAID FUNERAL OR WHY WOULD I PUT MORE MONEY INTO THE PRE-PAYMENT THAN IS NECESSARY?

For two reasons.

1. A family member may decide that they would like to purchase flowers or publish a newspaper notice or do something that was unthought of at the time of the
arrangement and the money would be there to use. Hopefully the interest would cover any additional wishes, but if it does not, any added funds you’ve put into your prearrangement would be available.
2. While the funeral homes costs are guaranteed, the section on a funeral home contract entitled “Disbursements” is not guaranteed. These are things that are paid for by the funeral home on your behalf to other parties, such as an officiant honorarium, or the cremation/aquamation cost itself at the crematorium or aquamation site, or the death registration fee to register the death, etc. These are costs by others that the funeral home has no control over – so if those costs go up, again, hopefully the interest gained or the small additional amount you placed into your pre-paid arrangement would cover the cost of these.

So truly - getting prepared is easy, flexible in how you would like to carry it out and a wise and satisfying thing to do. And at Rutherford Cremation & Funeral Services, pre-arrangements may be carried out at the funeral home, in the comfort of your own home or in a local café. It takes about one hour.

I often share this quote with my clients.

The hard part of death (the catastrophe) just happens.

The blessing is something we have to make.

When we meet a death with the intention to bring healing and beauty to it, the blessings we find can be profound. The blessings don't cancel out the catastrophe, but they make it easier to live with.

Worth pondering..

Our bodies are on loan to us from the earth.

When we're born, the elements give themselves to us, they coalesce around us. Earth, air, fire and water. These aspects of the land come together to build the physical body that we live in in this lifetime.

When we die, and we return to the earth what we’ve borrowed from it, that contract is completed.

When you think about your body, or the body of someone you're responsible for, and how it's going to return to the earth, think about those elements. Think about the returning of what was borrowed, the completion of that contract.

It's a beautiful interweaving because we can't complete our own contract. It's a debt we leave to those behind us, and it's their job to return us. When that's done, the cycle continues.

How we die ......a usefull book

A Recommendation from a Death Doula's Library

Chances are, you will die from one of these causes: heart attack, stroke, old age, su***de, murder, accident, Alzheimer's, or cancer. A runaway bestseller and a National Book Award winner, "How We Die" explains the physical experience of each of those processes.

Uncharted territory can be frightening, but Nuland, a surgeon, gives us a firsthand view of the journey we will all eventually take. A sobering but eye-opening read.

When we get the news that someone we love is dying, it takes a while for our souls to accept it, because we don't want it to be true.

I've seen a series of stages that people go through in this process, and there’s a model from Family Systems Constellations that I find really useful to describe it. The stages are: Acknowledge, Accept, and Agree.

At the beginning, sometimes people don't want to acknowledge that this person is dying. They don't want it to be true. They don't talk about it, they just don't let it into the space.

This approach can come either from the dying person, or from the people around them. People say things like, "No, no, don't talk like that. You're going to be just fine." Or, "I'm just going to stay positive." Or, "You're looking great, and you're going to beat this." When, in fact, the person really is dying.

Not acknowledging an upcoming death is hard. It's hard for everyone around the dying person, and it’s hard for the dying person. When our inside truth and the outside truth don’t match, our souls feel the difference, and it’s hard.

The next stage happens when people acknowledge that death is coming, but they don’t accept it. In this stage, I hear people say, "I hate this. This is not supposed to be happening. I will not go along with this." They know it's happening. They're not in denial, but they're still fighting against the truth.

An image a client gave me for this stage was of being on a conveyor belt that was moving forwards, while she was running backwards as fast as she could. She had acknowledged that death was coming, but she didn’t want to accept it.

The third stage, if people can get to this, is agreement. We don't want what's coming. But instead of running backwards against the movement of the conveyor belt, we say, "This is what’s coming. How can we meet it as well as we can?" And we begin to walk towards it. The phrase I like for this stage is, "Unconditional cooperation with the unavoidable."

There's an incredible peace that comes from agreeing with the unavoidableness of death. When our inner experience (what our souls know to be true) and what we're living on the outside (how we communicate with those close to us and how we actually live our lives) are in congruence, our souls relax.

It's not anything we want to have happen, but, if we can come to agreement with death, we can meet it with much more grace and confidence.

WHAT TO DO WITH THE FLOWERS ?????

UNCLAIMED......

What Happens to the Dead If No One Comes Forward to Claim Them? In Ontario, It’s a Growing and Costly Problem

The funeral home workers carried the modest poplar casket to a freshly dug grave. There, two cemetery staff paused for a few moments before lowering the box to its final resting place.
“This is someone whose life has ended and we take a moment to just think about that,” said Scott Miller.

The four funeral home workers brought a second casket to a plot beside the first, and cemetery staff repeated the ceremony. About five feet away was another grave, where they’d soon do it again with a third casket. The workers gathered that afternoon did more than just bring remains to their final home. They bore witness to the lives, and deaths, of three men they did not know. A 59-year-old, 70-year-old, and 78-year-old.

From 2021 to 2023, Ontario had 2,908 people whose bodies went unclaimed. Most of them were older adults, about 2,500 were Ontarians age 50 and older. The number of unclaimed bodies is rising and there are fewer places to bury them. Public funds for burying the unclaimed have not kept up with the increasing value of land and cost of operations, sources say. And those involved in putting these people to their final rest worry not enough is being done. There are unclaimed burials at Highland Park Cemetery every week, said Miller. On rare occasions, loved ones attend. But most of the time during these burials, Miller said, “there’s never anyone but us there.”

In 2023, there were 1,183 unclaimed bodies in Ontario, according to the Office of the Chief Coroner. Of those, about 980 were adults 50 and older. Nearly 900 of the total were male. Most were from the Toronto region.

In the last couple of years, the growing number of unclaimed bodies caught the attention of the Ontario chief coroner’s office. Staff started to track why it was happening. In 37 percent of cases in 2023, no next of kin was identified. But in the 59 percent of cases where family was located and they didn’t claim the body, the most common reason given was financial restrictions, said Dr. Dirk Huyer, the chief coroner for Ontario.

Two years ago, Miller remembers a Kitchener woman visiting Highland Park Cemetery looking for the grave of her brother. Cemetery staff looked him up and found the plot where he was buried unclaimed some months prior. The man had been estranged from his family for about 50 years, Miller said, and attempts to reach his family had failed. The woman ended up purchasing her brother’s grave as well as a gravestone to identify his place of rest.

If someone does end up claiming the deceased, they can, if eligible, seek funding from the municipality or region where the person lived, said the chief coroner’s office.

To be claimed holds special meaning for Felicia Kontopidis.
Over the last six years, the director of care at Toronto’s Journey Home Hospice, which serves vulnerable individuals including those experiencing homelessness, has performed many searches to help patients avoid becoming unclaimed. In one of her first cases, Kontopidis desperately tried to find the family of a man who had died to ensure he had a timely burial. She contacted the local police, hospitals, and homeless shelters seeking leads. Kontopidis also looked up the man’s surname online, calling dozens trying to find people who could be related.

“I called all over Ontario,” she said. Through her queries, she learned the name of another man believed to be a relative. But despite multiple efforts, Kontopidis couldn’t reach him. She told the coroner’s office about her search and mentioned the one man she couldn’t reach. Then one evening as Kontopidis was leaving work, she got a phone call that has stayed with her ever since. It was the dead man’s brother. The coroner’s office had tracked down the individual from her report.

“I can’t forget … the tone in his voice,” she said, noting the family had thought their loved one may have died in the last few years, but weren’t sure until then. The family ended up claiming the individual and performing his funeral themselves. “It just showed me early on that it’s so important to make that diligent effort, even though it’s so exhausting trying to find family, particularly if it’s a common last name,” said Kontopidis. “To be claimed it just means so much,” she adds. “He wasn’t forgotten.”

A search for next of kin, which takes about four to six weeks, is performed once a person is declared unclaimed. In rare cases, for example where there are issues identifying an individual, bodies have sat in a morgue for more than a year before burial, the chief coroner’s office said. When there’s no next of kin, anyone, including friends, co-workers, or agencies such as government ministries or places of worship, can claim the body. At the end of the search, if a claimant is not found, the Office of the Chief Coroner authorizes the municipality to make burial arrangements.

Caring for the unclaimed is not a job funeral home staff take lightly. At Hulse, Playfair & McGarry in Ottawa, staff usually accompany the remains to the cemetery and say final prayers for the deceased.
“Our staff become the extended family to bury remains with some kind of dignity,” said Tom Flood, funeral director at the home. “We’re the last people to bring that person to their final resting place.”

In Ontario, municipalities are responsible for burying an unclaimed body, though the municipality may recoup funds from the deceased’s estate. The municipality can also recover funds from government programs such as the CPP death benefit. The City of Ottawa pays $1,794.22 plus tax for direct disposition, a rate which it said it adjusts annually based on the Consumer Price Index.
Industry representatives call for better government supports at the time of death, noting that the CPP death benefit (a one-time payment of $2,500 for those eligible) has not risen in years. Same with municipal financial aid for burials, for which the City of Ottawa pays $1,300 plus tax, an amount the city said hasn’t risen in a number of years.

At Highland Park Cemetery, $1,300 only covers the amount to open and close the grave. It doesn’t include the additional $3,000 to purchase the plot, of which roughly 40 percent goes toward ongoing care and maintenance, said Miller. That means end-of-life costs become more expensive for others. “Everybody else that comes here subsidizes it,” Miller said. “But there are cemeteries that no longer will look after (unclaimed remains) because they either can’t afford to, or they realize that the space is too valuable to let it go for such a low amount of money.” Parts of Ontario, he said, are “basically running out of space for unclaimed interments.”

“You’re having fewer and fewer cemeteries that are willing to accept unclaimed remains. And more and more people going the route of unclaimed,” said Miller, who is also a funeral director at Cole Funeral Services. He and others have noted that cremation is less expensive, but is not generally performed for unclaimed people. The exception is if the deceased (or their family, if they’re involved) expressly wished for the individual to be cremated, said Dr. Huyer. That’s because cremation is not acceptable in all religions, and if a family member later steps forward and wants to disinter the remains, they won’t have that option.

After the three caskets were lowered into the ground that June day at Highland Park Cemetery, the dirt that had been unearthed while digging was returned to its place. The cemetery normally pre-assigns plots for unclaimed remains to ensure a speedy burial when a funeral home calls. But due to the volume of requests this year compared to last, the cemetery opened up more space. To the naked eye, once the grass is replaced over the graves, and topsoil and seed sprinkled on top, the plots would resemble parts of the cemetery that have yet to be used. Besides the small numbered marker, there would be no clue as to who, if anyone, is buried there. Their life story, and how they ended up alone, is a secret that rests with them in their graves.

Worth Sharing ...

The Accessible ACP Learning Community - ACP in Canada | PPS au Canada The Accessible Advance Care Planning (ACP) Learning Community is for people who work in healthcare, community and social services, and disability sectors. Community members are passionate about raising awareness of advance care planning and ensuring ACP is accessible to all people in Canada. This g...

News worth knowing

Canadian Press article:
'A moral issue':
Canadian funeral directors warn of unauthorized obituaries

Funeral directors across the country are warning grieving families about a trend of third-party websites republishing obituaries for profit.

Jim Bishop, the funeral director for Bishop’s Funeral Home in Fredericton, said he’s noticed an increase in grieving people who use his services complaining of altered death notices, sometimes with erroneous details, appearing on one such website called Echovita. Bishop said Echovita's actions are part of a trend of scraping information from funeral home and newspaper websites and reposting it alongside options to buy flowers and digital candles. He said this data-scraping poses "a moral issue” because it is capitalizing on obituaries without the families' knowledge or permission.

“When people click on Google, and they search a person’s name … they don’t always realize they’re not dealing with the funeral home’s website with that source. They’re being sent a link to a third-party outfit they think is us, and it’s not.” He said that since mid-July, about a dozen people have advised him their loved one’s obituary had been taken.

Jeff Weafer, president of the Funeral Services Association of Canada, said the practice is particularly problematic because writing an obituary is the last chance a family gets to tell the story of their loved one’s life. Having that story taken and used without permission can feel like an invasion of privacy during an especially vulnerable time. “Part of the expression of grief for families is they want to proudly tell the story of their father, their brother, their mother. It’s very therapeutic to tell that story, whether that’s done through an obituary or a Facebook note that shares the details of one’s life,” Weafer said in an interview.

The website of the Better Business Bureau, which has not awarded Echovita accreditation, shows five complaints against the company. One complaint from 2022 called Echovita a "trolling company" for posting an unapproved and altered version of an obituary, causing great distress to the grieving family.

An unnamed Echovita official responded to the complaint that the company had removed the obituary from its site. "I would like to add the information we share was not private as stated, since the original obituary was posted publicly on the internet," the response said. "In further sharing the basic facts, as we do, which is legal, we made a human error and we apologized."

A review of Echovita last month on the Better Business Bureau site also expresses distress over the website’s practices.

“My grandfather recently passed away, and when I Googled his obituary, the first hit was from some random site I’d never heard of, Echovita. The obituary was not what my family had published,” the review reads. The review continues to say that on top of “being terribly written,” the republished obituary named living family members mentioned in the original notice as deceased. “My family was devastated that this fake obit was the first hit people would see when they looked up my grandfather’s name. We were so embarrassed that people would think we’d written something of such poor quality to ‘honour’ our late loved one.” In a reply to the review, Echovita apologized "for any errors within the obituary."

Echovita representatives did not agree to an interview with The Canadian Press. In an emailed statement, a public relations agent speaking on behalf of the company said family members who notice errors in obituaries can request a revision directly on the website but provided no details about the company's verification processes. The Canadian Press also asked how Echovita verifies that flowers purchased on the website, which range in price from $90 to $334, make their way to grieving families or the funeral homes where services are held. Echovita's spokesperson said that 95 percent of all flowers that are ordered arrive at their destinations; however, the spokesperson offered no details to back up that claim.

Weafer said the Funeral Services Association of Canada is lobbying the federal government to strengthen privacy legislation and prevent families from suffering more, but he said the funeral association has yet to see a "significant response" from lawmakers.

The Bereavement Authority of Ontario has also published two separate notices about Echovita's practices, one in February 2021 and another in February of this year. A spokesperson for the authority said 11 people have complained since the beginning of this year about being "deeply upset" about their loved ones' obituaries being used on the website.

Quebec's registry of businesses lists a Quebec City address for Echovita and says Paco Leclerc is the president. In a 2019 court decision, Leclerc was named as one of the directors for the now-defunct website Afterlife, which was ordered to pay $20 million in damages to grieving families for the unauthorized use of death notices and photos. The ruling found that Afterlife repeatedly violated copyright rules by using data to market flower sales. At the time, Erin Best, the lawyer representing the plaintiff, expressed hope the decision would act as a “deterrent” against pirating obituaries, and warned that people copying obituaries should expect legal action.

While their push for tougher legislation continues, Bishop and Weafer both encourage grieving families to ask any third-party companies posting obituaries to remove unauthorized posts, or to contact government consumer protection where it is available.