‘Duo euthanasia’

— In the Netherlands, a famous couple chooses to die together

Former Dutch prime minister Dries van Agt and his wife, Eugenie, in Den Bosch, the Netherlands, in June 1983.

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The vow is “til death do us part.” But for former Dutch prime minister Dries van Agt and his wife, Eugenie, the aim was to leave this life the same way they had spent the past seven decades — together.

The couple, both 93, died “hand in hand” earlier this month, according to a statement from the Rights Forum, a pro-Palestinian organization that Dries van Agt created. They chose to die by what is known as “duo euthanasia” — a growing trend in the Netherlands, where a small number of couples have been granted their wish to die in unison in recent years, usually by a lethal dose of a drug.

A longtime politician who had conservative roots but campaigned for numerous liberal causes, van Agt served as prime minister of the Netherlands from 1977 to 1982. He later became the European Union’s ambassador to Japan and the United States

Photos of the couple from their decades-long careers as public figures often show them walking in step: waving to crowds through a car window, voting together at an election site and giving each other a smooch at a public event.

The van Agts’ health had declined in recent years, Dutch public broadcaster NOS reported. The former prime minister never fully recovered after suffering a brain hemorrhage in 2019, which happened while he was delivering a speech at a commemoration event for Palestinians. Eugenie’s health issues were largely kept private.

“I feel like it’s kind of beautiful, honestly, that you’ve lived your life together, you both happen to be gravely ill without a chance of getting better, you’re ready to go, and you would like to go together,” said Maria Carpiac, director of the gerontology program at California State University at Long Beach.

When it comes to the right to choose one’s own death, the Netherlands is “kind of the model” for any U.S. legislation on the topic, she said.

At least 29 couples — or 58 people — died together via duo euthanasia in 2022, the most recent year of data from the country’s Regional Euthanasia Review Committees. That’s more than double the 13 couples who did so in 2020, when the committee first started looking at partners specifically, but it still represents only a small fraction of the 8,720 people who legally died by euthanasia or assisted suicide in the Netherlands that year.

“It is likely that this will happen more and more often,” said Rob Edens, press officer for NVVE, a Dutch organization focused on research, lobbying and education about assisted suicide and euthanasia in the Netherlands. “We still see a reluctance among doctors to provide euthanasia based on an accumulation of age-related conditions. But it is permitted” in the country’s legal guidelines, he said in an email.

Assisted suicide is when a person self-administers a lethal dose while a physician is present, while euthanasia is when a medical professional administers the dose. Both are legal in the Netherlands when specific criteria are met. (Some groups prefer the term “medical aid in dying,” or MAID, due to religious and social stigma around suicide.)

Euthanasia is illegal in the United States, but assisted suicide is allowed in D.C. and at least 10 states: Oregon, Washington, Montana, Vermont, California, Colorado, Hawaii, New Jersey, Maine and New Mexico. Eligibility requirements tend to be strict across the country, Carpiac said, but there are differences between jurisdictions.

The Netherlands, a country of almost 18 million people, has allowed assisted suicide and euthanasia since 2002. It requires that individuals willingly request the termination of their life in a manner that is “well-considered,” with a sign-off from a doctor that they are experiencing “unbearable suffering with no prospect of improvement.”

Another physician then has to agree that the person qualifies, and doctors can choose whether they are involved in the procedure. After every death, doctors are required to notify a regional review committee, which examines whether each case was handled lawfully. Couples who seek duo euthanasia are required to apply and undergo the review process individually, with separate doctors.

“An accumulation of age-related complaints can lead to unbearable and hopeless suffering,” Edens said, explaining the Dutch guidelines. “The expectation is that if doctors are increasingly willing to provide euthanasia when there is an accumulation of old-age complaints, the number of duo euthanasia [cases] will increase.”

Research suggests that older Americans are at a higher risk of dying after losing a spouse, particularly in the first few months after their death. While the cause of this phenomenon is unclear, studies have found that grieving partners have higher rates of inflammation and are at increased risk of heart attack and stroke, often due to stress-induced changes in blood pressure, heart rate and blood clotting.

“The first thing that came to my mind was the widowhood effect,” Carpiac said, referring to the van Agts’ choice to die by duo euthanasia. “I have a grandmother who is 96, and she’s like, ‘I’m not going anywhere!’ But if I had a partner and they were my person, and we were both kind of at the end of our lives, would it be worth it if he were to go without me? Would I die of what I considered to be a broken heart? I would want to have a choice.”

Complete Article HERE!

Alzheimer’s: Watch for signs it’s time to start hospice care

By DANA TERRITO

When is someone with dementia ready for hospice care?

Considered to be the model of quality and compassionate care for individuals facing a serious or life-limited illness or injury, the concept of hospice care began in England in the 1950s.

A pioneering physician named Dame Cicely Saunders created the first modern hospice there in 1967. Hospice care focuses on caring, not curing, and in most cases, care is provided in the individual’s own home. Hospice care is also provided by self-supporting hospice centers, hospitals and nursing homes and other long-term care settings.

Hospice services are available to individuals of any age, religion, race or illness and is covered under Medicare, Medicaid and most private insurance plans, HMOs, and other managed care organizations.

The characteristics of dementia and Alzheimer’s disease are that they are life-altering and eventually fatal conditions for which curative therapies are not available. When someone reaches the stage of Alzheimer’s disease or other dementias in which everyday activities become too difficult for family caregivers to manage, and the symptoms become dramatically more pronounced, a doctor can refer the patient to a hospice provider for end-of-life care.

Some of the characteristics the affected individual may be exhibiting include the lack of ability to ambulate without assistance, incontinence of bowel and bladder, inability to dress and bathe properly, and speech limited to approximately a half dozen or fewer intelligible and different words. There are also intercurrent illnesses associated with advanced dementia in which hospice services would be a benefit. These include aspiration pneumonia, urinary tract infection, septicemia and impaired nutritional status. Hospice care is also available when co-morbid conditions significantly impair the affected individual’s health. These include congestive heart failure or cardiovascular disease, COPD, diabetes, renal insufficiency or malignancy.

Hospice services provide exceptional benefits for those with Alzheimer’s disease or other dementias. Each affected individual receives an individualized care plan, considering the individual’s condition and specific symptoms to determine what services are needed. Hospice provides durable medical equipment and medical supplies to assist family caregivers in managing the symptoms of their loved ones’ disease.

Additionally, hospice care workers can offer families recommendations for creating routines that help the individual feel more comfortable. A multidisciplinary team, including a medical director, oversees the individual’s care.

To begin hospice care, the family caregiver needs to obtain a physician referral. Hospice care is intended for individuals with a life expectancy of six months or less, so individuals with advanced dementia or Alzheimer’s must meet the criteria to qualify for care and receives a doctor’s referral. It can be difficult to assess when the end-of-life will occur since the disease progresses at different rates for everyone, so families need to begin the conversation with a doctor when the individual enters the later stages of the disease.

Most people use hospice care far too late. For more information about hospice care, reach out to the Hospice Foundation of America at hospicefoundation.org; the National Hospice and Palliative Care Organization at https://www.nhpco.org, or the Alzheimer’s Association at www.alz.org.

Complete Article HERE!

Your Partner Was Diagnosed With Dementia

— What Now?

Dementia can be a devastating diagnosis, but there are steps you can take to plan ahead and care for your partner. Learn about the early warning signs of dementia, what to do if you suspect a diagnosis, and how to create a legal, financial and end-of-life plan.

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Maybe you knew there was a possibility that it could happen. Maybe your partner’s mother or father had dementia, and maybe even their siblings, so you were watching for the signs. Or, maybe, it came out of the blue, and you never thought that dementia would ever impact you or your family. 

When you start to notice changes in memory, behavior and judgment that are not normal with your partner, it gives you a sinking feeling, whether you may have been expecting it or not.

Warning Signs of Dementia

According to the Alzheimer’s Association, there are 10 early warning signs of Alzheimer’s and Dementia that you can be watching for:

1. Memory Loss That Disrupts Daily Life

Forgetting recently learned information, forgetting important dates or events, asking the same questions repeatedly and increasingly needing to rely on memory aids or family and friends for things they used to handle on their own are all signs.

2. Challenges in Planning or Solving Problems

This may involve changes in the ability to follow a plan or work with numbers. For instance, they may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and/or taking longer to do things than they did before.

3. Difficulty Completing Familiar Tasks

Examples include having trouble driving to a familiar location, organizing a grocery list or remembering the rules of a favorite game.

4. Confusion With Time or Place

This may involve losing track of dates, seasons or the passage of time, trouble understanding something if it is not happening immediately and possibly forgetting where they are or how they got there.

5. Trouble Understanding Visual Images and Spatial Relationships

Some people experience vision changes that may lead to difficulty with balance or trouble reading. This may also lead to difficulty judging distance and determining color or contrast, causing issues with driving.

6. New Problems With Words in Speaking or Writing

This often presents as difficulty following or joining a conversation. They may stop during a conversation and have no idea how to continue or repeat themselves. Moreover, they may simply struggle to find the right words.

7. Misplacing Things and Losing the Ability To Retrace Steps

They may put things in unusual places, lose things and be unable to go back over their steps to find them again or accuse others of stealing, especially as the disease progresses.

8. Decreased or Poor Judgment

Experience in changes in judgment or decision-making. For example, when dealing with money or keeping themselves clean.

9. Withdrawal From Work or Social Activities

Because of the changes in the ability to hold or follow a conversation, many people experiencing changes due to dementia may withdraw from hobbies, social activities or other engagements.

10. Changes in Mood and Personality

This shows up as being confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, with friends or when out of their comfort zone.

If You Suspect Your Partner Has Dementia…

Don’t ignore the signs. Schedule an appointment with your partner’s primary care physician immediately to seek a diagnosis and take the next steps.

If there is a dementia diagnosis, you are likely completely overwhelmed. Your world has been turned upside down and it is likely hard to think beyond each day at a time, let alone the next month or year. However, taking steps to plan ahead can help things go more smoothly for you and your entire family. 

As the disease progresses, things are likely to only become more hectic, making it even more difficult to think clearly. Getting your legal, financial and end-of-life planning finalized early on will make it easier for you to make the appropriate decisions needed and to communicate those decisions to the right people before things get even harder.

Legal

Make sure your partner has updated legal documents in place (if they don’t already) before they are designated as being unable to make those designations/decisions for themselves due to their new diagnosis.

  • Patient Advocate/Health Care Durable Power of Attorney: This names someone as a “proxy” to make medical decisions for someone when they are not able to.
  • Living Will: This informs medical professionals of how one wants to be treated at the end of life (dying, permanently unconscious, etc.) and cannot make decisions on their own.
  • A Do Not Intubate, or DNI, order: This lets medical staff know someone does not want to be put on a breathing machine.
  • A Do Not Resuscitate, or DNR, order: This lets medical staff know not to perform CPR or other life-saving procedures in case the heart or breathing stops.
  • General Durable Power of Attorney: This names someone as a “proxy” to make financial decisions and handle financial transactions for someone when they are not able to.
  • Will: This names someone to be the executor to handle their estate after they are deceased.
  • Trust: For some, a Revocable or Irrevocable Trust naming someone to handle assets on their behalf and for their benefit either during their lifetime or after death is appropriate.

Financial Planning

It is important to work with your financial adviser to make sure fiscal affairs are in order for several reasons:

  • Make sure that all of your financial records are accounted for by using a Personal Recording Keeping document. Keep it stored in a safe place before that information is lost or forgotten by either or both partners.
  • Work with your financial adviser to make sure you have planned well to provide for your financial future, including your now more certain long-term care needs including dementia care.
  • Make sure assets are positioned and titled properly to assist with future long-term care needs and any future resources and assistance that may be needed.
  • Research any insurances you may currently hold to make sure you understand how they may be used for future long-term care needs.
  • Talk about how you might want to handle future care needs for your partner with dementia. If that includes you, as the healthy spouse, taking time from work (if you are not yet retired), plan for how you will handle that financially. Planning ahead for how care will be funded, if needed, is a key piece of future planning.
  • Research community and professional resources in your area. Put together a team to help you when needed.
  • Communicate your future plan to your family so that they can help you execute it when things are more hectic and the disease is more difficult to deal with.

End-Of-Life

There is currently no cure for Alzheimer’s disease or any other dementia. Some treatments, though, can manage some of the symptoms for a time. 

However, a person who has been diagnosed will gradually decline and the condition itself (or combined with additional health problems) will eventually result in death. For that reason, it is also important to plan ahead and make decisions for end-of-life early on. 

Making sure the important legal documents are in place is the first step. Communicating preferences for end-of-life to important family members is the second step. If there are any preferences for end-of-life services, that should be documented. Using a Letter of Last instruction document is a good idea.

When your partner is diagnosed with dementia, it can be a shock. For many, it can be so overwhelming that it can be hard to breathe, let alone get your head around doing anything. But once the numbness wears off, lean on your financial adviser and professional team of advisers to get a plan in place so that the legal, financial and end-of-life pieces are in order so that you can concentrate on caring for your partner and their ongoing needs.

Complete Article HERE!

Assisted dying

— ‘I do not want to end my days as a lost soul in a nursing home’

Jule and Wayne Briese copy

One couple’s story of four years from dementia diagnosis to assisted death

By Sheila Wayman

On the morning that Wayne Briese had chosen for his medically assisted death, he was out shovelling snow in front of his house at 6am, to make sure the doctor would be able to get her car in.

It was January 6th, 2022, almost four years after he had been diagnosed with Alzheimer’s disease at the age of 73. As soon as he received that news, Wayne made it clear to his wife, Jule Briese, that when he no longer had the quality of life that was acceptable to him, he wanted to avail of Medical Assistance in Dying (Maid), which was first legislated for in their home country of Canada in 2016.

“I do not want to end my days as a lost soul in a nursing home,” he told her.

At the outset, there was some doubt in their minds about whether Maid was available to somebody with dementia. Once it was clarified it could be possible, Wayne described it as “the light at the end of the tunnel”.

“I was very supportive because I know Wayne would have honoured what I wanted,” explains Jule (78), in a Dublin city hotel on a sunny September morning. She is holidaying here when we meet, her first trip to Ireland. Aware that this country is looking at the possibility of making provision for medically assisted dying, she is keen to share her experience.

The Oireachtas Committee on Assisted Dying is due to resume its public hearings today after the summer break. At the first of the committee’s five hearings so far, on June 13th last, its chairman, Independent TD Michael Healy-Rae, outlined: “The committee may recommend that changes are made to existing policy and legislation around assisted dying, but it could also recommend that no changes be made.”

The committee was set up after a Private Members’ Bill, Dying with Dignity Bill 2020, which seeks to allow for somebody with a terminal illness to request a medically assisted death, had passed the second stage in the Oireachtas.

In 2013, Marie Fleming, who was living with advanced multiple sclerosis, lost a landmark Supreme Court challenge for the right to an assisted death without putting anyone who helped her at risk of prosecution. She had claimed the ban on assisted suicide was discriminatory in that an able-bodied person may take their own life lawfully, but she could not be lawfully helped to do the same.

Wayne was always open and ready to talk. He never hid it. He wanted to be treated as Wayne, not as Wayne who had Alzheimer’s
— Jule Briese

Jule and Wayne had been married for almost 52 years at the time of his death and had been “each other’s best friends” since meeting as teachers in Ontario. For the last four years of their marriage, they comforted each other in the carrying of their individual burdens: he sensing the disease was erasing the blackboard of his life, and she the witness to its unstoppable advance. The fact that Wayne never lost his insight into what was happening “was both a blessing and a curse”, she says. He could empathise that it was hard for her too.

Jule Briese: Aware that this country is looking at the possibility of making provision for medically assisted dying, she is keen to share her experience.

Jule’s way of working through anticipatory grief of the loss of her husband was to write. A memoir booklet, entitled In the Hot Chocolate and Decadent Cake Society (2018), captured some of her early thoughts and those first telltale signs of confusion. In October 2017, as Wayne looked for his pyjamas in the wrong cupboard instead of going to the shelf where they were always stored, “fear scrapes its finger along hollows, unsettling my insides”, she wrote. She knew they were reaching the stage where “no longer content to be ignored, this elephant trumpets for more attention”.

When the anticipated diagnosis of Alzheimer’s was confirmed three months later, at the Brain Health Centre in Vancouver, it was “still surreal”, she tells me. They initially wondered, as it was a research centre, could they be involved with some research. But there wasn’t anything for Alzheimer’s and they felt “cast-off and adrift”.

How they navigated the next four years, from diagnosis to his date with death, is a story of personal choice, stresses Jule. But she believes there’s healing power in telling stories because it gives permission to other people to share theirs, with every listener, or reader, taking out of it what is for them and passing it on. She also wants to honour Wayne’s courage and “to give voice to what he was passionate about, and that was the right of the individual to an end-of-life choice”.

The couple, she says, did not choose to avail of Alzheimer’s medications for what is an incurable and progressive condition. “Diet, exercise and making your life meaningful… that is what was important to us.”

What was also at the back of their minds was that some of the drugs mask the progression.

“You get to a point where they don’t work any more – you were here, and there you are now,” she says, demonstrating a gulf that they had no wish to cover in a sudden leap. It is not that they were anti-medication, and Wayne did take a pill for anxiety from the second year onwards, but rather, it was a matter of weighing up the benefits and side effects.

Wayne lodged documents with a lawyer straight after his diagnosis, outlining his desire for Maid and his definition of quality of life. Jule knew it would be her job to look out for the red flags that would signal stages of decline. Meanwhile, they got on with life, in which the outdoors had always played a large part. “We hiked, we camped. We weren’t overly social people; we had a small circle of friends.”

With Wayne’s permission, Jule recorded the two of them talking about issues. She devised questionnaires relevant to how he was coping with daily life, and they could use his responses to give a fuller answer to the “How are you?” opening gambit at medical check-ups. Extracts from these recordings, along with selected email exchanges with his doctor and notes from Jule’s journaling, were published earlier this year in a book, Shared Conversations – Glimpses into Alzheimer’s.

The book Shared Conversations – Glimpses into Alzheimer’s was published earlier this year.

“Wayne was always open and ready to talk,” she says. “He never hid it. He wanted to be treated as Wayne, not as Wayne who had Alzheimer’s.”

In the main, friends were really supportive, but “there are those who don’t know how to cope, and they leave”.

Once the couple had established that assisted dying was a possibility for somebody with dementia, they contacted Dr Tanja Daws, who Jule had heard spoken warmly of as the doctor at the centre of somebody else’s experience of Maid. At the first meeting with the couple, Dr Daws told them it was going to be a long journey, “we are going to be together for a while”.

“And we were,” says Jule. They met her every three months after that, over nearly four years. A second, independent doctor must be involved in the assessment for Maid, so Daws referred Wayne to a geriatric psychiatrist, Dr Pawel Juralowicz, for parallel appointments. Both of them would have the chance to get to know Wayne in the lead-up to him making a formal Maid application.

A big concern for Wayne was that a time might come when he would no longer be deemed capable of giving consent, and then his choice of a medically assisted death could no longer be enabled. But a Canadian legislative amendment, Bill C-7, in March 2021, removed that worry. It allowed, in certain circumstances, for assisted dying to go ahead for an eligible patient who had agreed in advance a waiver of final consent with their doctor.

“Sometimes it’s called Audrey’s Bill,” says Jule in reference to a high-profile campaigner, Audrey Parker, who had stage-four breast cancer and had been assessed and approved for assisted dying. She had hoped to see out one more Christmas, but, afraid that pain medication would remove her ability to give final consent, she went early, choosing November 1st, 2019, for her death.

‘When I set my date for Maid I don’t want anyone to try to change my mind’. That stayed with me. It’s about Wayne
— Jule Briese

By early 2021, an escalation of Wayne’s dementia was unsettling both him and Jule. By July, he was struggling to know how the people around him fitted into his life. In a conversation recorded on July 22nd, 2021, Jule said to him: “We’ve talked about red flags and you said something like: ‘When I get to the point of not knowing who my wife is and when I get to really being in a confused state, then it’s time to think about Maid.’ Would you say that you are actually beginning to experience those things that you did not want to have to happen to you?”

“I think that is a correct observation by you,” he replies. “Is it all right to say that?”

They agreed that episodes of confusion were becoming more prolonged and that they were nearing “10 minutes to midnight”. This is a term Dr Daws used for the time at which Wayne would need to apply for a Maid assessment, to verify that he met the criteria and was fit to sign a waiver for it to go ahead without his last-minute consent, if incapable at that point.

Everybody has their own definition of quality of life, says Jule. “You had to deteriorate to a certain point, where your quality of life as you defined it was in jeopardy, and it was at that point you could set your date for Maid.”

Choosing to be formally assessed is one thing, but how do you know when to set the date? It was a question Wayne asked both of his assessors in December 2021. Jule recalls how Dr Juralowicz suggested to him that the consciousness knows when the time is right, while Dr Daws replied: “Wayne, if life is a stage, how do you want to take your final bow?”

“Within a week, Wayne said, ‘I want to have Maid after Christmas’ – that was on December 18th. I said ‘before new year’s?’ and he said ‘No, no, after new year’s.”

He set the date for January 6th, 2022, at 10am.

“Two months before he set the date, he’s in the shower and he called me, ‘Come quick’. There was his smiling face, ‘When I set my date for Maid I don’t want anyone to try to change my mind’. That stayed with me. It’s about Wayne, it’s not about me, and I think that’s really important.”

With the date set, the challenge was how would they spend the finite days left? They had envisaged they would enjoy a quiet getaway together on the west coast before Wayne said his goodbyes to relatives and friends. But, as it turned out, he had already reached a stage where he didn’t want to leave their home at Qualicum Beach on Vancouver Island.

Jule Briese: ‘He passed with love and we opened the windows so his soul could go. Yeah, it was beautiful, it was peaceful, it was the way he wanted to go.’

So they stayed put, and Wayne made phone calls to people important in his life. The couple invited close friends over to dinner and a special friend played a clarinet concert for him.

On a lighter note, Jule recalls how a niece, Kashmir, who had spent time with them while attending university nearby, had bought a gingerbread train kit as a fun gift for Wayne that Christmas before she knew he had set a date for Maid. “She said to me, I don’t think somebody that is dying is going to want to do this. I said ‘I think you’re right and we will give it to grandchildren of a friend’.”

However, when there was a power cut one afternoon, they decided to take it out and assemble it between the three of them.

He did not want me to be the worn-out caregiver. He said to me: ‘My life is finished, my quality of life is gone, you need to live your life’
— Jule Briese

Kashmir was disgusted to discover the kit did not include icing. “She said, ‘Who on earth would do this for kids and not have icing?’ I said I have honey. It was a mess, but it was like we were all kids. It was such a priceless memory.”

Although describing themselves as “more spiritual than religious”, the couple invited a local Anglican priest to be with them on the day Wayne had chosen to die. He came at 9am and, in the course of conversation around their pellet stove, Wayne spoke of how he had been blessed in life and had no regrets.

“Then he turned around to me and said beautiful things and to Kashmir.” When Dr Daws and a nurse arrived, the couple moved into the room that overlooked the garden though double glass sliding doors and the priest gave each of them an individual blessing for their diverging paths.

In a last-minute flash of Wayne’s characteristic humour, he looked at the nurse and said: “Where have you been for the last 40 years? Finally, somebody that can put in an IV.” Then he told them: “I’m ready.”

“I held his hands and Kashmir held his feet,” says Jule. “It’s like he was on his journey and preparing to leave, we had said our goodbyes. I was there to witness his leaving.” Opera singers performing some of his favourite John Denver songs, from the album Great Voices, were playing in the background.

“He passed with love and we opened the windows so his soul could go. Yeah, it was beautiful, it was peaceful, it was the way he wanted to go.” When it was over, Jule asked to spend some time alone with him and played a song she had written for him called My Best Friend.

As medically assisted dying goes, she feels she and Wayne had the “gold star” experience. Training she had done in her 50s for conflict resolution, mediation and negotiation had equipped her to communicate with Wayne throughout the lead-up.

“If I had not taken those [courses], we would never had had those conversations. It taught me to be curious.” Out of their discussions, she has created a one-act play, Ten Minutes to Midnight. She believes it will be an educational tool, showing how to communicate with somebody with dementia, as well as giving insight to doctors.

With a number of countries, including Ireland, currently looking at legislating for assisted dying, Jule hopes that what she has to share might help in some way towards them doing it better. “You look and learn from what other countries have done.”

Jule is grateful for what Wayne’s choice meant for her. “He did not want me to be the worn-out caregiver. He said to me: ‘My life is finished, my quality of life is gone, you need to live your life’. There’s the compassion. He gave me the gift of his life,” she says, as her composure throughout the interview falters for the first time. “Therefore I have to use that.”

Complete Article HERE!

5 Common Signs of Dementia You Need to Know to Support Older Adults

— It can be challenging to spot the signs and symptoms — here’s what you need to know

By Terry Fulmer, PhD, RN, FAAN

There’s been exciting progress on what we know about dementia — which is the loss of memory and reasoning to such an extent that it interferes with a person’s daily life. New technologies and therapies are on the horizon. Influential groups such as the Davos Alzheimer’s Collaborative are forging partnerships between science, business, government and other organizations, and a new treatment was recently approved by the FDA to slow the progression of Alzheimer’s disease, the most common form of dementia.

While these advances are positive, we know that science takes time and new treatments can be expensive. People who are concerned about dementia need support now.

One in four family caregivers in the United States cares for someone with Alzheimer’s disease or another form of dementia, which can be costly and stressful. It can also be challenging to spot the signs and symptoms of dementia, since they may be misinterpreted as normal age-related memory loss.

Spot the difference

For anyone who cares for, lives with or regularly sees an older adult, here are some common scenarios you might observe and how to distinguish between normal behavior related to aging and more concerning changes related to dementia.

  1. Withdrawal from work or social activities. Most people occasionally feel uninterested in social obligations, but people with dementia may struggle to hold or follow a conversation. This can lead to withdrawal from social activities or hobbies that were once a favorite pastime.
  1. Confusion with time or place. It’s normal to forget the date or location where something happened if you eventually recall it later. But what may be cause for concern is if an older adult forgets they’re at a friend’s home, for example, and doesn’t remember that you drove them there, despite your explanation. This could be a warning sign of dementia.
  1. Trouble finding the words. We’ve all been tongue-tied trying to find the right word in a conversation — that’s typical. For people with dementia, however, they might find themselves stopping in the middle of a sentence because they can’t recall a familiar word or repeating the same story over again because they don’t know how to advance the conversation.
  1. Problematic decision making. Forgetting to pay a bill or change the oil in the car is normal behavior, but consistently making poor decisions with money or neglecting everyday tasks like bathing or brushing one’s teeth could be a sign of dementia.
  1. Major mood swings. People with dementia may become confused more easily, causing feelings of fear, anxiety, depression or anger to arise quickly, especially when in unfamiliar situations. This is different than mild irritation if a daily routine is disrupted.

Give and get support

If you notice any of these changes in an older adult and are concerned they may have dementia, there are several research-backed steps you should take and tools to ensure they get the care they need.

First, make an appointment with their primary care doctor to get tested. Though the prospect of a dementia diagnosis can be frightening to consider, catching it early affords more time to plan. If their care providers are part of the Age-Friendly Health Systems initiative, dementia screenings are a routine part of the care they’d receive.

Next, make sure you understand what matters to the older adult in terms of their care priorities. Having a conversation with them about their care plan as early as possible before dementia progresses helps ensure their wishes through the end of life are understood and implemented. In fact, most older adults with dementia appreciate discussing their care priorities and having a care partner who actively listens to their concerns before other decisions are made. Tools like this conversation guide can help.

At the same time, tap into an available support system for yourself, too. Navigating a new diagnosis and caring for a person with dementia can be overwhelming for caregivers, so contact your local Area Agency on Aging, join a support group, and seek resources to help you manage any feelings of stress or social isolation.

While we wait for more widespread therapies, drug discoveries, and detection strategies to combat this debilitating disease, we all should remember that there are support systems and organizations available to help now. By understanding the signs and symptoms of dementia, family caregivers can better help older adults plan and get the kind of care that matters to them when they need it most.

Complete Article HERE!

A good death for a Minnesota woman who championed the right to die with dignity

Gallery: Cheryl Hauser smiles as she looks out the window Friday, Nov. 5, 2021 at her home in Hopkins, Minn. Hauser, who has Alzheimer’s disease, has decided to eventually hasten her death by voluntarily stopping eating and drinking after watching her brother die from it.

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It’s not the dying I mind, Cheryl Hauser used to say.

It’s the leaving.

She left us this month. On her own terms, in her own time; surrounded by as much love, music and kindness in death as in life.

This is her parting gift to us. A chance to talk about the part of life nobody wants to think about.

The end.

“We would sing to her and rub her feet and her hands,” said Cheryl’s daughter, Wendy Longacre Brown, who chronicled those final days as her terminally ill mother voluntarily stopped eating and drinking to hasten the end.< "You're in it together," said Brown, who has worked for years as a death doula, easing the transition from this life to whatever comes next. “There’s a lot of joy and laughter. But there is sadness.”

Cheryl had loved the life that Alzheimer’s was stealing from her.

“She was everything,” her daughter said. “She was someone who could sing in the grocery store aisle, then have a long conversation out in the parking lot with a total stranger.”

But Cheryl knew what was coming. She lost her brother Bill to Alzheimer’s, years before the disease actually killed him.

When she was diagnosed, she knew how she wanted her story to end. When the time came, she would VSED — voluntarily stop eating and drinking.

“When the day comes when nothing matters anymore, I’ll begin,” she told the Star Tribune in 2021. “My brother died of this disease and it was torture. I don’t want that for me and my family.”

Instead of languishing for years in memory care, she chose to spend her last weeks at home in Minnetonka. Friends visited, musicians serenaded her, and her grandchildren pressed her thumb into soft clay to create keepsakes. She sat outside in the sun, surrounded by summer flowers and birdsong.

One of Cheryl’s daughters is a birth doula. The other a death doula. Welcoming us into the world and helping us say goodbye.

“The more that death is part of the conversation and less of a taboo, the more we as a community can be present for one of the two most significant moments in your life,” Brown said. “It’s never too early to start a conversation of what people wish for around their end of life.”

Brown had helped other families through the goodbyes that nobody wants and everyone needs. Now she was the one saying goodbye. Every day, she shared photos and updates on her mother’s condition on cherylhauser.com.

The site started as a way to share news with family and friends. But it also drew strangers, who grieved with them and marveled at their generosity. In a culture that shies away from talk of death, here was a family showing us what dying looks like. Or what dying could look like.

“People often ask, did she have doubts? I can honestly say she did not,” said her husband, David McNally.

VSED is not a swift or simple death and patients in cognitive decline need special care to ensure that they are capable of giving informed consent. But this had always been Cheryl’s plan.

There were moments, as Cheryl was dying, when she would become confused and forget. Her family would sing to her, massage her legs as they cramped from dehydration, and offer her a tiny spritz of water or a cold spoon to hold in her mouth for comfort.

VSED cases are overseen by doctors and hospice staff. Caregivers were with Cheryl to make sure she was comfortable and had medicine to ease any pain or anxiety.

It was a death only possible in a family that talked about the end of life long before they needed to.

“Several times in the journey [in the four years between Cheryl’s diagnosis and death], I would say to her ‘How are you feeling about VSED?’ ” McNally said. “She would say no, I’m good, I’m going to do it. When my time comes, I will do it.”

The couple met when they were 60 and married when they were 70. Sixteen years. That’s all the time they were given. They made the most of their last four years together; traveling, going on adventures and advocating for the right to a dignified death.

Cheryl “was a very outgoing, very joyful person, just an extraordinary personality. She lit up a room,” he said. “She connected with people. She had this uncanny ability, when speaking with people, of making them feel special.”

There were incredibly sad moments, he said, as the disease progressed and her beautiful life started to slip away. Cheryl lost the ability to drive, to play the piano, sometimes she struggled to tell one grandchild from another. In the end, he said, she could do almost nothing for herself without help.

In May, she told her family she was ready.

Cheryl Harms Hauser, who had a smile that could light up a room, died on June 2, 2023. She was 76 years old.

Complete Article HERE!

How to Help a Loved One With Alzheimer’s or Dementia

By Victoria Pelham

Watching a loved one face dementia is often heartbreaking and disorienting.

They may forget where they are, repeat themselves, or get confused and agitated. Over time, as memory disorders damage cells in the brain and nervous system, they’ll need someone to care for them. Their speech, personality and thinking can also shift. There might even come a day when they don’t recognize you.

It’s called “the long goodbye.” While groundbreaking new medications could slow Alzheimer’s disease progression, there is still no cure for the estimated 6.7 million Americans with the condition, according to the Alzheimer’s Association.

On average, a person with dementia will live about 10 years or more after diagnosis, said Zaldy Tan, MD, director of Cedars-Sinai’s Memory and Aging Program, medical director of the Jona Goldrich Center for Alzheimer’s and Memory Disorders, and the Carmen and Louis Warschaw Chair in Neurology. Knowing what to expect can help you guide your loved one through those years with dignity.

Respect their wishes

Speak to your relative as early as possible in their illness, while they can still make decisions, about their plans and desires for end-of-life care and their finances—and honor them fully, Tan said.

“Just because they have dementia doesn’t mean they don’t have the right to live the way they choose to,” he said.

Losing independence can be one of the most challenging parts of a memory disorder.

“The trick is knowing how they liked to live before their illness,” he added.

When caring for or visiting with a relative with dementia, try to continue familiar activities they enjoyed. Did they often spend time with friends? Schedule regular meetings with one or two friends weekly or monthly. Did they have a sweet tooth? Then don’t cut out all sweets. Instead, space them out with healthier fruits and vegetables.

“Just because they have dementia doesn’t mean they don’t have the right to live the way they choose to.”

Dementia patients lose short-term memory first

In its initial stages, Alzheimer’s disease often causes patients to lose household or personal items, such as glasses, or to skip important appointments and tasks.

Families can help by offering cues, including placing labels on drawers, cabinets and doors to tell what’s inside and using calendars for medication schedules, meals, doctor’s appointments or due dates for bills.

While neurological diseases block these newer memories, old ones can resurface.

“Sometimes people revert to the past because that’s what’s accessible to them,” Tan said.

Their house and loved ones look different than they remember and therefore unrecognizable, and they might try to return to that past life in an attempt to “make sense of the world,” he explained.

Meet your loved one in their truth

There’s no need to correct them every time they believe or say something inaccurate—and it can do more harm than good.

If the person thinks they’re going to see a friend who died 10 years ago for a poker party, it will just upset and confuse them to mention the death. They’ll also likely forget within a few minutes.

“What does it accomplish?” Tan said. “They may not have the capacity to understand. Their reality is different from yours.”

Play along or change the topic, he suggested.

Use simple, direct and slow communication with yes and no questions (asked one at a time) and eye contact—in a quiet place with few distractions, the Alzheimer’s Association recommends. Visual and sensory signals like touch or pointing can also help you engage.

Complete Article HERE!