Tag: Alzheimer’s disease

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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.

By Jennifer Brooks

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↩!

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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↩!

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Need for formal bereavement support in dementia care is largely underestimated

by University College London

The need for grief counseling in dementia care may be substantially underestimated, according to new research led by a UCL academic.

The study into levels of pre-death grief for caregivers of someone with dementia found that the need for formal counseling was around 300% higher than current predictions.

The new International Journal of Geriatric Psychiatry paper was supported by the end of life charity Marie Curie.

The current public health framework model for care states that most people will adapt to loss through from their social network but suggests that 10-12% of people will require professional support.

However, this new study found that 30% of dementia caregivers needed professional support.

The paper describes pre-grief as the caregiver’s response to “perceived losses in a valued care recipient”, adding that, “Family caregivers experience a variety of emotions (e.g. sorrow, anger, yearning and acceptance) that can wax and wane over the course of dementia, from diagnosis to the end of life.”

Lead researcher Kirsten Moore, who completed the study while based at the Marie Curie Palliative Care Research Department, UCL Psychiatry, said, “Our research showed that 78% of those caring for someone with dementia reported experiencing pre-death grief. The participants cited that finding the right person to talk to wasn’t always easy and that some feel they can’t access bereavement services as the person is still alive.

“We can see that the current bereavement models may underestimate the level of formal counseling and support these caregivers need and that services are under-resourced to meet the demand, meaning people are going without much-needed support. These caregivers provide vital care to people living with dementia, and they have a right to access appropriate support for their own well-being.”

Deborah Paget, 61, is a retired nurse who cared for her mother, Audrey, when she was diagnosed with vascular dementia and Alzheimer’s. Deborah says, “When I was caring for my mum, I found there was nothing in terms of support for pre-grief, there was no framework, no structure, nothing. I was in deep mourning for my mum, and I didn’t know how to reach out to anyone for emotional support

“The grief I experienced before she died, compared to after, was so different and I felt so unprepared. Looking back, I should have tried to reach out but when you are caring for someone, you need to be encouraged to reach out for support. There needs to be a structure in place that signposts you to the support you need. After my mum died, I was so overwhelmed, and I felt so lost and alone. With a bit more support to manage my grief, while she was still here, perhaps I would have been able to cope just a little better.”

Marie Curie says change is needed urgently, not just to meet the current need but to ensure that bereavement services are ready to meet the increased future needs of the UK’s aging population.

Rachel Warren, Senior Policy and Research Manager at Marie Curie, and researcher on the UK Commission on Bereavement, says, “Caring for a loved one with dementia can be a lonely and distressing experience. When someone mourns a loved one who is changing every day they can experience grief for the person who is still alive.”

“Without appropriate support some caregivers are at risk of later experiencing prolonged grief disorder which can have a detrimental impact on their well-being. We know from the findings from the UK Commission on Bereavement that being well supported before and during a death is vital to how someone copes when the death occurs.”

“The number of people living with Alzheimer’s is increasing with the aging population, so we urgently need to ensure better support is in place for caregivers. If the Government invested just the equivalent of a pint of milk for each person in the population, it would help to transform the availability and accessibility of bereavement support to those who need it.”

The UK Commission on Bereavement, an independent commission launched in June 2021, looked at the experiences of people who had been bereaved over the past five years. Based on the findings, it made eight key recommendations for a vision for bereaved people in the future. These included being well supported before and during the death, and to be able to easily find and access the right emotional bereavement support that suits their circumstances.

Dr. Richard Oakley, Associate Director of Research at Alzheimer’s Society, said, “This study shows what we see every day on our Dementia Support Line—we desperately need an improved, better-resourced grief and bereavement support system that not only supports at end of life but in the case of dementia, from diagnosis onwards.”

“For a , strong feelings of grief can arrive well before a person living with dementia reaches the end of their life, as there is a loss of a shared future and intended relationship and lifestyle.”

“These feelings may develop or change as the person’s dementia progresses and can start when they first notice they are unable to do the same things they used to, when they are diagnosed, or at any other point while they’re living with the condition. While family and social networks play an important role in providing support, this research shows that these networks alone are often not enough.”

“With dementia cases set to rise to 1 million by 2025, it’s not acceptable that families continue to face their alone. We need to have the right support available for families to support them along the whole journey from diagnosis to end of life.”

Complete Article ↪HERE↩!

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Learning to live

— Dementia brings ‘unofficial loss’ and often leads to grieving alone

By Lauri Perman

When my teenage sister died in a car accident, friends and neighbors blessed our family with oodles of food. The large dining room table, used only on holidays, was covered with food, enough to serve all the out-of-town family members who crowded in the living room. In the aftermath of a horrific death, community support was abundant and healing, a source of comfort, both emotional and practical. Our family’s grief was recognized and honored; it was “official” grief in the eyes of the world.

This is in sharp contrast to what happens when a spouse develops dementia. In her November 2019 New York Times article, “The Loneliness of Frontotemporal Dementia,” Dr. Sara Manning Peskin quoted a spousal caregiver as saying:

“This grief is not official … Casseroles do not appear at the front door, flowers are not delivered, condolence letters are not received.”

At a time when a spouse has lost a partner, the community often retreats rather than rallies around. It’s well known that spousal caregivers end up isolated. What is less well known is that in their isolation they are grieving alone.

Their spouses are alive and yet no longer present. It is what family therapist Pauline Boss calls an “ambiguous loss.” During my husband’s long years of decline, it often felt as if someone had kidnapped him. I’d look at the stranger in the familiar body and ask myself, “Who are you? And what have you done with my husband?”

Friends disappear. At first I wondered what was wrong with us that our friends had disappeared. Then I realized it was normal and happens to most people. I learned to treasure those rare people who stayed or re-appeared. When my husband was in skilled nursing care, it was a great comfort to me when other people recognized his existence by visiting or sending him a birthday card.

To engage in conversation with someone with dementia it helps to let go of expectations. The person we once knew is no longer present. If we recognize that loss and acknowledge our grief, we are better positioned to engage with the new person before us. Visiting with someone with dementia can be an opportunity for creativity and to practice cognitive flexibility. It can be good for us, a different form of exercise and meditation.

When my husband was still well, he had a lovely dinner with his mother at a Chinese restaurant when her dementia was quite pronounced. They ordered two entrees to share. My mother-in-law took some of the first dish, declared it excellent, and then did the same with the second. Next she returned to the first dish and said, “Oh, I haven’t tried this one.” And try it again she did, once again for the first time. Each dish she tried, no matter how many times she’d tried it before, was for the first time. By the time dinner was over, my husband estimated she’d enjoyed a full Chinese banquet. He exercised cognitive flexibility in not correcting her.

If you know someone whose spouse has dementia, please reach out. Take the person to lunch and listen, really listen. Ask the spouse what he or she misses the most. Acknowledge that their life has changed, that they have had an “unofficial loss.” Sometimes it may be more helpful to take the person with dementia out for lunch or for a walk, to give the caregiver some precious alone time.

It can be especially hard to comfort a caregiver who denies their loss, and many do. This semi-heroic stance seems admirable, but the pain is present nonetheless. It’s a delicate balancing act to acknowledge both the presence and the absence of the person with dementia. Of course dementia is a gradual loss not a sudden death and the caregiver’s needs change over time and sometimes even from day to day. Staying in touch helps you know what kind of support is most helpful.

What happens when the person with dementia dies? Does the community rally around the bereaved spouse? Unfortunately no. Often the community consoles the bereaved spouse with words such as “It’s a blessing.” Or, “I know you wouldn’t have wanted him to live much longer.” Or, “He didn’t really have much of a life any more, did he?” “Now you’re free. You’ve been so burdened with caregiving.”

The spouse is denied support when the person with dementia is living and denied support again when the person with dementia is dead. We can and must do better. When someone with dementia dies, the bereaved spouse has still lost a beloved person whose death merits the same compassion any death does.

Complete Article ↪HERE↩!

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Genetic testing for Alzheimer’s is on the rise. But what happens when the results are dire?

— Few support services available to help people deal with the implications of at-home testing

Lexi Nelson talks to her mother Wendy at their home in Foxborough, Mass., March 21, 2023. Wendy’s mother died from Alzheimer’s disease, her father suffers from it, and genetic tests show that Wendy and her three daughters each carry a gene variant indicating an increased risk.

Wendy Nelson watched her mother slowly die of Alzheimer’s disease, unable to move or swallow at the end.

“All her pleasures of life were gone,” Nelson said.

Grief-stricken, terrified of facing the same death, Nelson ordered 23andMe DNA test kits for Christmas 2020 for herself and three adult daughters.

A Boston-based biotech executive who is now 52, Nelson hoped the kits would provide reassurance. They delivered the worst possible result. Nelson has two copies of the APOE4 gene variant that increases the risk of Alzheimer’s, which means her risk of developing the disease is eight-to-12 times higher than people with the most common version of APOE.

“It totally backfired,” she said.

Millions of people are expected to test for Alzheimer’s in the coming years — some like Nelson, with at-home test kits, others at labs, as new drugs for people with early Alzheimer’s from partners Eisai Co Ltd and Biogen and Eli Lilly usher in sweeping change in approaches to treatment of the disease.

Testing for the APOE4 gene variant among Americans being treated for Alzheimer’s has more than doubled from a year ago, an exclusive analysis of medical records for Reuters by health data firm Truveta found. The increase was driven by the new treatments that promise to slow the progression of the disease, but also carry risks, especially for people like Nelson carrying two copies of APOE4.

Yet few support services are available to help people deal with the implications of APOE4 testing, according to interviews with more than a dozen neurologists and genetic counselors. Alzheimer’s patients and caregivers face a shortage of genetic counselors to explain the tests and help them navigate the psychological, medical, financial and legal consequences.

Eisai and Biogen’s Leqembi, which arrived on the market in January, costs $26,500 US a year and is not covered by U.S. Medicare outside of clinical trials. Medicare has said it will expand coverage if the drug is granted full U.S. approval, expected this summer.

‘Existential dread’

“When you learn that information, you’re potentially learning information about your siblings, about your children,” said Emily Largent, a bioethicist and health policy expert at the University of Pennsylvania Perelman School of Medicine.

“People describe feeling existential dread.”

As a scientist, Nelson understood intellectually what her APOE4 results meant, but they created emotional havoc for her family. She had inherited one copy of APOE4 from her mother and the other from her father, who was showing no symptoms of Alzheimer’s at the time.

When her father’s memory began to fail a year later, one of her two sisters doubted it could be Alzheimer’s, Nelson said. Nelson knew he had to have the disease, because of her genetic test results.

The tests also showed that each of Nelson’s three adult daughters had one copy of APOE4, which triples or quadruples the risk of developing the disease — confronting them with their own Alzheimer’s risks along with their mother’s.

Nelson’s daughter, Lindsey, 22, and a fourth year nursing student at New York University, said she was traumatized when, even before testing, Nelson talked about exploring assisted suicide rather than suffer her mother’s fate.

“I would yell at her, cover my ears and run away,” Lindsey said. “There are many complicated emotions involved.”

Nelson’s eldest daughter, Lexi, 24, who works in data analytics, turned to research showing that lifestyle changes such as weight lifting can improve cognitive function. “I’ve tried really hard to improve my sleep, I’m exercising a lot,” she said.

Her youngest, Pam, 20, a sophomore biology major at UCLA, said she takes comfort in knowing that her mother’s result is not a diagnosis. “It’s just a risk factor, and there are many other factors that influence what will happen.”

Leqembi is not suitable for Nelson, who is not symptomatic. Even if she were eligible, she said she is not a fan because of the risk of brain swelling, which is higher for people with two copies of APOE4.

Nelson is pinning her hopes on an experimental pill from Alzheon, which is being tested in people with early Alzheimer’s who have two copies of APOE4.

Vials and packing are seen for a medication.
This Dec. 21, 2022 image provided by Eisai in January 2023, shows vials and packaging for their medication Leqembi. Leqembi is not suitable for Nelson, who is not symptomatic.

She is working her way through a bucket list of trips. In February, she climbed Mt. Kilimanjaro to raise money for a cancer charity, and she would like to visit Patagonia, the Greek Islands, South Africa, possibly Antarctica.

If treatment fails, she said she has her “exit plan”: legal euthanasia through a clinic in Switzerland. “I do not want to live the way my mom had to live her last five years of life. She was miserable,” she said.

The testing revolution

Until recently, most doctors tended not to order genetic tests to determine Alzheimer’s risk, because there were no effective treatments to slow or prevent the disease.

That changed with Leqembi, which was shown to reduce the rate of cognitive decline by close to 30 per cent in patients with mild Alzheimer’s. Eli Lilly’s donanemab is in clinical trials with results expected by June.

Both drugs remove the buildup in the brain of amyloid plaques associated with Alzheimer’s, and are viewed as a first step towards even more effective treatments. Both can cause swelling and microbleeds in the brain. U.S. regulators recommend genetic testing before starting treatment with Leqembi.

“With this drug, it behooves us to check,” said Dr. Sarah Kremen, a neurologist at Cedars-Sinai in Los Angeles.

In the four months ahead of U.S. approval of Leqembi in January, APOE4 testing among people over 55 who visited a doctor within the last 30 days increased 125 per cent. From September 2022 to January 2023, the rate averaged 1.4 tests per 100,000 patients, compared with 0.6 tests per 100,000 patients in the same period a year earlier, the analysis by Seattle-based Truveta found.

The analysis was based on a review of medical records from 7.9 million adults at 28 major U.S. hospital systems. It does not include at-home consumer tests.

The National Institutes of Health estimates up to 25 per cent of people in the United States have one copy of APOE4 and up to five per cent have two copies. Yet there is a shortage of genetic counselors to help families deal with the implications of having two copies of APOE4.

A 2018 study in the European Journal of Human Genetics found the U.S. had just one trained genetic counselor per 82,000 people. The United Kingdom had 1 per 193,500.

Banner Alzheimer’s Institute in Phoenix, which is testing Lilly’s donanemab, is researching an interactive online platform to deliver APOE results to volunteers being screened for enrollment in the trial.

“We needed a scalable way to warn people about the potential benefits and risks of genetic disclosure,” said Dr. Eric Reiman, Banner’s director.

Better not to know?

While the U.S. Genetic Information Nondiscrimination Act (GINA) bans discrimination in employment and health insurance, it does not cover long-term care and disability and life insurance.

Some members of families with increased genetic risk of Alzheimer’s say it might be better not to know at all.

Dovie Bryant, 77, who is taking part in the Lilly trial, lost her mother to Alzheimer’s in 2012.

When she shared with her five siblings that she had one copy of the APOE4 variant, none wanted to find out their own status.

Her brother Jim Painter, 71, said he feared testing could make it harder to pass a health screening to move into a retirement community that offers increasing levels of care as a person ages.

“That might be a red flag,” Painter said.

Complete Article ↪HERE↩!

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Notes From a Caregiver

— A husband tries to strike a balance between living in the present and contemplating the future as his wife’s Alzheimer’s disease progresses

David and Cheryl McNally

“I hate it! I hate it! I hate it!” The tears that flow down her cheeks I am powerless to stop. I hold her hand and respond in the way she has requested, not with words of encouragement but with the truth of her reality.

By David McNally

“Yes, darling, it’s bloody awful,” I say. What must it be like to be losing your mind, to be in a mental fog, desperately seeking to find your way through, only to discover the fog thickens?

My wife’s vibrant personality still shows up, yet the joy from social interactions is dissipating.

I keep this at the forefront of my own mind as my wife’s Alzheimer’s progresses, and I am pulled every which way with caregiving duties. Despite needing personal support, the one person who previously was my source of comfort is incapable of giving it to me. And I accept this reality. Her emotional pain is as much as she can handle. My resilience to stay the course must come from other sources.

Caregiving for a spouse with Alzheimer’s is the experience of watching the person you love gradually disappear. My wife’s vibrant personality still shows up, yet the joy from social interactions is dissipating. Not without a fight, mind you. It’s her inability to track a conversation, however, that is becoming too difficult. Her withdrawal is slow but evident.

Our journey is unique in that my wife is choosing to die on her own terms. We are now at the stage where she has put down a marker as to when this will happen — within the next year. Cheryl, my wife, will VSED (Voluntary Stop Eating and Drinking). There will be no memory care unit, no unnecessary suffering for her or her loved ones. When life holds no more joy, and nothing matters anymore, she will begin the process.

Suspension of ‘Normal’ Life

In so many ways, therefore, “normal” life is suspended for me. But then, what is normal at the age of 76? My role as a caregiver is not an aberration; there are millions meeting the needs of loved ones with debilitating, terminal illnesses. What racks one’s own emotions is witnessing the incremental progress of this disease, and the waiting. One is caught in the conundrum of not wanting your wife to suffer but not being ready to let her go.

There is also the guilt associated with looking to the future, a future beyond and without Cheryl. How can I think of such things! Yet wisdom tells me my thoughts are understandable. It is nature’s instinct for survival. Almost twenty years ago, my first wife died of ovarian cancer. I was 56 with potentially many years ahead of me. Now at 76, there are obviously fewer years, but what if there are ten or more? Giving up on life is anathema to me.

This attitude sustains me until it doesn’t. The confidence that I will be okay can be severed unexpectedly. Recently, while cleaning the kitchen, I asked “Alexa” to play Andrea Bocelli. As if to ensure I was fully aware of the grief to come, Bocelli began with, “Time to say goodbye.” I sobbed, as the enormous void soon to be in my life washed over me.

“Then again,” says my incredibly active mind, “who is to say you won’t go first. There is no evidence of illness, and you have a high sense of well-being, but don’t get ahead of yourself. Remember your own debilitating cancer treatment ten years ago. Yes, you were cured but another unpleasant surprise could be on its way.”

This is not a negative thought, but rather a reminder to stay present, to stop waiting, to be awake to the gifts each day brings.

Trying to Make Sense of Caregiving Experience

This is also not Pollyannish or being in denial, but an understanding of how joy and grief can co-exist. Ironically, Cheryl and I laugh a lot. I have the heritage of a British wit and she has a wonderful sense of humor. I don’t believe I have seen anything more beautiful than when her face lights up with a spontaneous smile. She is a magnificent audience of one. That is more than enough applause for me.

This is not a negative thought, but rather a reminder to stay present, to stop waiting, to be awake to the gifts each day brings.

Life is a mystery. That is my current conclusion from my time on this planet. How does one reconcile two wives with terminal illnesses? Railing at God serves no useful purpose. Well-meaning people utter a popular admonition: “God doesn’t give you anything you can’t handle.” My theology is God does not designate illness to one person and not another. That being said, I do believe that within each of us is a spirit that enables the transcendence of enormous difficulties.

Being a reflective person, I endeavor to make sense of this caregiving experience. Several years ago, I wrote a book called “Even Eagles Need a Push.“To quote from my own writing, I stated: “I have been down many paths looking for happiness. But nothing has made more sense and resulted in more contentment and fulfillment than this understanding — the purpose of life is to be a growing, contributing human being.”

There are certainly growth opportunities as a caregiver: patience, surrender, compassion in action, letting go, and acceptance, to name a few. Moreover, contributing to the safety and security of another is as purposeful as it gets. I have no answer to why life has led me to this place and no idea of what the future holds. I am willing, however, each day to step into that mystery.

Complete Article ↪HERE↩!

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Anticipatory grief: How to cope if you’re struggling to watch a loved one age

— Here, experts break down anticipatory grief, an under-talked-about and all-too-common experience of watching loved ones get older.

By

It can creep up on you slowly or happen in a single moment, but anticipatory grief finds its way into the lives of most adult children or caregivers at some point. And the confusing part: Most people don’t know it when it hits them. Unlike grief after loss, which gets its fair share of air time, anticipatory grief is relatively unheard of, making it difficult for folks to recognize—  and process — when they’re experiencing it.

“Anticipatory grief is a process that occurs prior to an expected loss,” explains Alicea Ardito, a licensed clinical social worker in private practice with Loudoun Adult Counseling and Northern Virginia Older Adult Counseling. “Often, anticipatory grief is associated with the loss of a loved one to death, but the definition has expanded to include many other types of losses as well.” (Think: Cognitive decline.)

Whether you’re experiencing it now or want to be prepared, here’s what experts want you to know about anticipatory grief. 

What is anticipatory grief?

A viral tweet about anticipatory grief sparked a recent conversation, but the concept isn’t new — or rare. “Anticipatory grief is a very common experience for caregivers and/or adult children,” says Iris Waichler, a licensed clinical social worker in Chicago and author of “Role Reversal: How to Take Care of Yourself and Your Aging Parents.” “It references watching the physical, cognitive, behavioral and emotional changes you witness in a loved one. In a sense, you lose them twice. Once you have seen these changes over time, and the second time is at the moment of death.”

What triggers it?

While a concrete moment, such as a diagnosis or obvious cognitive or behavioral change, can set off feelings of anticipatory grief, there isn’t always one particular event that prompts it.

“Anticipatory grief can be triggered by many things,” explains Ardito. “It may be the realization that a loved one is nearing the end of their life, witnessing the process of a physical or cognitive decline or observing the progression of a life-limiting illness.”

This moment or phase then can then take you to a place where you begin to imagine life without them, Waichler notes. “It sometimes becomes an unconscious way to prepare for their death.”

What does it look like?

“Anticipatory grief involves complicated and complex feelings similar to those feelings associated with grief after a loss,” says Ardito. While each person will experience it differently, many will have some, or all, of the following feelings, according to Ardito and Waichler:

  • Depression.
  • Anxiety.
  • Anger.
  • Sadness.
  • Disbelief.
  • Denial.
  • Dread.
  • Fear.
  • Shock.
  • Guilt.
  • Helplessness.
  • Hopelessness.
  • Numbness.
  • Dissociation.
  • Confusion. 

“There also may be other emotions involved, such as gratitude or acceptance,” notes Ardito.

“While there may be empathy for the parent as they decline in health, there may be residual feelings, such as anger, abandonment, confusion or frustration. Luckily, there is space for all of these feelings.”
— ALICEA ARDITO, A LICENSED CLINICAL SOCIAL WORKER

For Carly Nguyen, a mom of two who runs the blog Little Voice, Big Matter, anticipatory grief presented in the form of wanting to make sure she provided closure for her father before he passed. “When I accepted that there was nothing else that could be done for my father, who was dying of cancer, I felt this great sense of urgency to let him know that we would all be OK,” she explains. “I wanted to be sure I eased any burdens he might be feeling and reassure him that he had done a fine job as a parent and a husband. I felt like I needed him to leave this world with that peace of mind.”

For adult children who have a contentious relationship with their parents, anticipatory grief can be even trickier. “It is not uncommon to feel conflicted about the relationship,” notes Ardito. “While there may be empathy and compassion for the parent as they decline in health, there may be residual feelings about the relationship, such as anger, abandonment, confusion or frustration. Luckily, there is space for all of these feelings. A person does not have to choose just one way to feel.”

Contending and actively dealing with anticipatory grief is a personal process, but here are a few ways to approach these unique and often confusing feelings, according to Ardito and Waichler:

Talk it out.

According to Waichler, regardless of whom you speak to, talking about your feelings regarding the impending loss is key. “If appropriate, and the person who is dying shares a willingness to discuss their feelings about their impending death, it can create an intimacy and environment to help both parties begin to cope,” she says, adding: “Many people feel regret for not saying all they wanted to a loved one that is dying.”

If a conversation with the aging or ill person isn’t on the table, Waichler recommends finding “another outlet to discuss tumultuous feelings.” She offers the suggestions of talking to a “therapist, trusted friend or family member, an online or in-person support group or a spiritual or faith-based leader.”

The main take-away: Don’t self-isolate and be alone. Says Waichler: “People tend to do this when depressed and it only makes healing more challenging.”

Get inquisitive.

Ardito notes that when a realization occurs that there may not be much time left, it’s a good time to inquire about their life (even if you already know). “It can be helpful to ask questions about family history or express interest in hearing a parent retell favorite stories,” she says.

This also was a recommendation when the topic of anticipatory grief recently came up on Twitter:

Get intentional with your time.

It sounds cliché, but it’s true: Quality is more important than quantity. “It can be very helpful to focus on the quality of time spent rather than the limited quantity of time left,” says Ardito. “Try to become fully present, even in difficult moments.”

In order to make the most of your time with a loved one, no matter how much is left, consider formulating a loose plan or general ideas. “Spend time thinking about how you want to spend your remaining time together,” Waichler suggests. “What can you do to help make this time more meaningful and bring quality and purpose to both of your lives?”

“Think along the lines of creating beautiful moments and memories together,” Waichler continues. “It may be a walk in a beautiful park, spending time in a garden, looking at photos of beloved family and friends and reminiscing or sharing favorite movies or music together.” 

Set boundaries, if need be.

“Anticipatory grief can jump-start long-delayed discussions about past unresolved conflicts due to the nature of the circumstances created by impending death,” notes Waichler — but this isn’t the case for everyone, and there’s no guarantee that conversations or interactions will end on a high note.

“If your relationship with the person dying is conflictual or strained and you see no room for healing, identify another person who can step in to be the primary caregiver, if you’re serving in that role,” Waichler says. “You may need to set limits on the frequency and nature of your contacts if you see them ending in conflict. Identify tasks that can be helpful to the person, but that won’t raise conflict. Examples may be helping with meals, helping with laundry or chores or helping to coordinate a caregiving team.”

“Some people experience anger or irritability towards the person who is dying. It is important to recognize and identify the source of these feelings.”
— IRIS WAICHLER, A LICENSED CLINICAL SOCIAL WORKER

Accept your feelings — no matter what.

One of the most important things you can do during such a fraught time is to “acknowledge and accept your feelings, whatever they are, without self-criticism or judgment,” according to Waichler, who notes that “journaling can be a good outlet to process your feelings.”

“Some people experience anger or irritability towards the person who is dying,” notes Waichler. “This may be because you are angry they are leaving you or because of the physical and emotional demands placed on you if you’re caregiving. It is important to recognize and identify the source of these feelings.”

Take care of yourself.

While your aging parent or loved one may be your number one priority, it’s important to “engage in self-care activities during this time,” says Waichler.

“Make time for yourself to get enough sleep, eat healthy meals and exercise,” she says. “Additionally, try mindfulness activities, such as yoga, meditating or praying to gain inner strength and calm. The stronger you are physically and emotionally, the more you can engage with a loved one in meaningful ways.”

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