A diagnosis of dementia, a category of diseases affecting memory and thinking that includes Alzheimer’s disease, can feel overwhelming and upsetting. You might worry that you will lose control over your life and ability to make your own decisions. Fortunately, receiving a diagnosis of dementia or Alzheimer’s does not mean that you cannot execute legal documents or make decisions about plans for your future finances and health care.
People with dementia can execute legal documents to plan for their futures when they have the mental state — or capacity — to do so. Capacity refers to your ability to understand the contents of a legal document, such as a will, and know the consequences of executing it. If you know who your family is, understand your assets, and comprehend your will, you can execute a valid will and plan for the distribution of your estate after your death, provided you understand what you are signing and its effect on your life.
The following can help you in planning where you wish to live, what kind of care you receive, and what happens to your assets if you get severely ill or pass away.
Health Care Power of Attorney
Consider appointing a health care agent to make medical decisions if you become incapacitated. You can name a health care agent using a health care power of attorney, sometimes called a medical power of attorney or a durable power of attorney for health care. Your health care agent can make medical choices if you can no longer do so.
Picking someone you trust, such as a responsible child or spouse, or another family member, can give you peace of mind that they will have your best interests and desires in mind when they make decisions. For instance, dementia patients who prefer receiving in-home care can express this wish to their agent.
In the power of attorney document, you can also state your intentions regarding health care and limit your agent’s capabilities if you wish.
Living Will
For an added layer of protection, you can also draft an advance directive or living will that states your desires regarding medical treatment if you are unable to communicate with your physician. Your living will can express whether you want treatment to prolong your life.
Financial Power of Attorney
Using a financial power of attorney, known as a power of attorney for property, you can select a trusted individual to handle your financial affairs if your disease progresses such that you can no longer make financial decisions. Your financial agent can manage your money and pay bills on your behalf, but they cannot use your money for themselves.
In the power of attorney for property document, you can restrict your agent’s powers. For instance, a person might specify that the agent can manage personal accounts, but not sell the family home.
Long-Term Care Planning
After a dementia diagnosis, consider whether you would like to receive long-term care at home or in a facility, and whether you intend to apply for Medicaid or long-term care insurance. If you want to apply for Medicaid, you might need to prepare your finances to become eligible.
Last Will and Testament
Making a last will and testament, also known as a will, can help ensure your assets go to your family and friends when you pass away. You can determine how much of your money each beneficiary will receive and make bequests to individuals. For example, if you have items of sentimental value, you can leave them to specific people. Without a will, your assets will transfer to your heirs according to the law in your state.
At a certain point, the emphasis shifts from keeping terminally ill seniors alive to keeping them as comfortable as possible. Saying goodbye to our loved ones can seem unbearable. But the silver lining is that your senior doesn’t have to suffer unnecessarily. Instead of continuing painful and tiresome treatments until their last moments, a senior’s care plan can change to focus on quality of life. Hospice services are often the best senior care option when a serious illness becomes terminal. A hospice provider will focus on compassionate, dignified end-of-life care.
If you’d like to learn more about options for hospice care in your area, our Resource Hub can help you easily track down senior care services in your neighborhood. This free online resource contains detailed listings of local hospice services, allowing you to assess and choose the best options for your senior.
In this article, we’ll explore everything you need to know about hospice care. This type of care is a common choice for those facing a terminal illness, and the National Hospice and Palliative Care Organization reports that more than 50% of Medicare recipients were enrolled with a hospice provider at the time of their death.
In 2014, the Huffington Post reported that the hospice industry in the United States had quadrupled in size since the turn of the century—to the point where 65% of all Americans spend the last stage of their life in hospice services. But how do you know if this type of care is right for your senior?
Hospice care: allowing your senior to die with comfort and dignity
What is hospice care?
The goal of hospice care is not to cure your senior or extend their lifespan. Instead, hospice care professionals strive to make the last few months of your senior’s life as peaceful and as comfortable as possible by addressing pain and other problematic symptoms in the best way possible.
The end result is a dignified death that allows seniors to spend more time creating valuable memories with family members instead of preoccupying themselves with futile medical care.
Hospice care is only for seniors with terminal diagnoses. If there’s still a reasonable hope for a full recovery, hospice services are not recommended. Some seniors take it upon themselves to choose a hospice care plan when faced with months of grueling surgeries, chemotherapy and overnight hospital stays. They’re perfectly within their rights to refuse medical treatment as long as they are of sound body and mind.
If your senior has become incapacitated for whatever reason (either physically or mentally), family caregivers may choose a hospice care provider on their behalf.
Hospice care involves a number of services, including:
Medical social services
Occupational therapy
Physical therapy
Speech therapy
Caregiver support
Grief support
Medical equipment
Physician services
Pain medication
Nursing services
Counseling
Spiritual support
Emotional support
When should my senior start hospice care?
If you start hospice care too early, your senior may miss opportunities for potentially lifesaving treatment. On the other hand, starting hospice care too late can reduce the positive impacts this type of care can have on quality of life.
According to a report released by the National Hospice and Palliative Care Organization (NHPCO) in 2019, the average time Medicare patients spent in hospice during 2018 was about 90 days. However, about 28% of beneficiaries spent seven days or less in hospice care—which the NHPCO considers far too short to be beneficial.
Generally, hospice care is provided when a senior has less than six months to live.
Is hospice care the same thing as palliative care?
Both hospice care and palliative care are types of “end-of-life” care options for seniors. However, they’re not the same. Palliative care is provided while a senior continues to receive medical care for a terminal condition, while hospice care essentially abandons any potential cure or treatment and focuses entirely on comfort.
Why would my senior need hospice care?
In order for a senior to be eligible for hospice care, they must have received a terminal diagnosis. Seniors may benefit from a hospice care plan if they feel like they can no longer face further painful and uncomfortable medical procedures. Many seniors accept the reality of their situation and choose to die on their own terms instead of fighting for a highly unlikely recovery.
What are some signs my senior should seek hospice care?
There are a number of signs that could suggest it’s time to consider hospice care:
Treatment is no longer having any effect.
Your senior no longer wishes to receive aggressive intervention.
The side effects of their medical treatments are becoming difficult to manage.
They seem confused or drained by constant medical treatments.
They are losing the ability to communicate effectively.
They are losing their appetite.
They spend much of their time sedated or sleeping.
Medical professionals indicate that continued treatments will provide no benefit.
Your senior expresses a desire to die on their own terms.
Questions to ask yourself as you consider hospice care
Is my senior suffering from a life-limiting disease or illness?
Is my senior suffering serious signs of decline?
Shouldn’t my senior die on their own terms?
What services does hospice care provide?
Limiting pain and increasing comfort
Seniors who receive hospice care can limit pain with a number of options, and their pain can be controlled without frequent trips to the hospital. Whether your senior is aging in place or living in a nursing home, hospice care can make their days as comfortable as possible. For example, medical appliances and supplies can be brought to their residences (such as hospital beds and wheelchairs).
Certain therapeutic treatments can also provide relief to seniors, including physical and occupational therapy. Note that this therapy is not intended to “cure” your senior; it’s only intended to make their life more comfortable. Hospice care features a strong emphasis on holistic well-being, and it may include home health care, nursing services, medication and even respite care for family caregivers. These services are often available around the clock.
Seniors can also receive emotional support from trained professionals when they choose hospice care. Confronting our mortality is never easy, and a range of mental health care experts, social workers, counselors and other skilled individuals can help seniors find peace and well-being as they approach the end of their life.
Spiritual support
Seniors who choose hospice care may find themselves seeking spiritual guidance. Religious leaders can visit your senior as part of their hospice experience, helping seniors navigate the process of death and consider the afterlife. Some religions suggest followers go through certain steps before they leave the world.
Limiting medical procedures
Another important aspect of hospice care is limiting medical care. If your senior chooses hospice care, they can stop undergoing difficult treatments, such as chemotherapy or dialysis. However, they may still continue with other types of treatments, such as medication for low blood pressure.
Questions about hospice care
What types of options are available with hospice care?
Hospice care can be divided into the following main categories:
Nursing home hospice care
In-home hospice care
Hospice care facilities
Nursing home hospice care is an excellent choice for seniors who need to remain in long-term care facilities, while home care can be delivered to those who are aging in place. Although your senior may also attend dedicated hospice care facilities, excessive transportation is not recommended for those with terminal illnesses. For this reason, the first two choices are most common.
Is hospice care safe?
Hospice services are an established part of the medical industry in the United States, and it’s completely safe when carried out by qualified, experienced professionals. Hospice care is often misinterpreted as “helping someone to die,” but medical treatment still continues until the moment of death.
Is hospice care available for Alzheimer’s disease and other forms of dementia?
Hospice care can be catered to the needs of seniors with Alzheimer’s or dementia. Along with the aforementioned services, dementia-specific hospice care options include:
Mental health care support specifically geared toward dementia
Feeding
Respite care for overwhelmed family caregivers
What questions should I ask hospice care providers?
What will my senior’s hospice care cost?
Does my senior meet the criteria for hospice care?
How long will my senior survive on hospice care?
What kind of workers/medical professionals will be assisting my senior?
Are counselors and social workers included in hospice care?
How often will nurses and other medical professionals come to help my senior?
How will you manage my senior’s pain?
What is the role of a hospice doctor?
What happens if my senior’s condition improves?
What happens if I decide to halt hospice care?
How to talk to family members about hospice care
Broaching the topic of hospice care can be uncomfortable. It’s important to approach this topic in a careful, considerate manner.
Hospice care is a topic you should also discuss with the entire family. Some family members may want your senior to continue fighting until the bitter end and may not want to accept that the battle is already lost. When you discuss this type of care, try to bring the entire family together and give each person a chance to speak.
How to approach the topic of hospice care with your senior
Seniors may not want to confront the possibility of their own mortality, and the conversation may become extremely emotional.
On the other hand, many seniors achieve a sense of calm and focus when they accept their fate, and they may be glad that you brought up the possibility of hospice services. Indeed, they may be thankful that you’re giving them the option to end life on their own terms and cease painful treatments.
Questions to help a senior consider hospice care
You’ve been fighting your illness for so long. Wouldn’t you like to be more comfortable now?
Wouldn’t you like to go out on your own terms?
You’ve been spending so much time in the hospital. Wouldn’t you like to spend more time with your family members before you leave us?
Paying for hospice care
How much does hospice care cost?
The cost of hospice care depends on the services and treatments your senior requires. Some seniors require only pain control and emotional support, while others might require more extensive care options like rehab, medical equipment and more. It’s worth noting that hospice care will probably be cheaper than continuing additional medical treatments that will not cure your senior.
Can I get help paying for hospice care?
The good news is you can get help paying for hospice care from a number of potential sources:
Medicare: Medicare can provide funding for hospice care under certain circumstances. Medicare’s hospice benefit applies if your doctor certifies your senior has a life expectancy of six months or less. Once your hospice benefit begins, Medicare will not cover anything intended to cure the terminal illness but will cover all hospice care costs.
Medicaid: The Medicaid hospice benefit provides nursing, physician services, counseling and more to those with a terminal diagnosis. Coverage includes home care, short-term inpatient care, respite care, equipment and more. Patients must file their election statement with a chosen hospice provider to be eligible.
Veterans Benefits: Veterans Benefits provides VA Palliative Care for enrolled veterans. Coverage includes the cost of a health care team, which not only includes medical professionals but also mental health workers and chaplains.
Private insurance: In some cases, private insurance plans will cover hospice care. However, it really depends on your specific plan, and you’ll need to read the fine print to be sure.
How can I find hospice care near me?
If you’ve been searching for hospice care near you, it’s easier than ever to locate qualified, reputable care options. Refer to our Resource Hub for detailed listings of hospice care providers in your neighborhood. It’s as easy as visiting this free online resource, browsing your options, and choosing the best hospice care provider nearby.
AMA CXO Todd Unger discusses caring for LGBTQ seniors and addressing disparities during end-of-life care with Carey Candrian, PhD, an associate professor at the University of Colorado School of Medicine in Denver.
0:00 AMA Moving Medicine for June 21, 2022 1:04 What disparities affect LGBTQ older adults, specifically? 2:04 What is driving these disparities in LGBTQ older adults? 4:06 How have previous stigmas taken a toll on LGBTQ seniors mental health? 5:35 Why are LGBT older adults at particular risk for receiving inequitable end-of-life care? 8:17 How is end-of-life care different from other areas of health care where we don’t see these huge gaps? 8:43 What are the drivers of this discrimination? 9:53 What kind of data would be helpful—and how can it best be collected by care providers? 11:46 What do you mean by “breaking the script” when it comes to communication with LGBTQ older adults? 13:30 How would you like to see end-of-life care evolve and what do we need to do to get there?
My father was 92 years old. He had congestive heart failure and COPD. He was living on oxygen and a dozen medications that had kept him alive since a debilitating stroke paralyzed him forty years ago. Last year, when his doctors told him that he was dying in a matter of weeks, or months, he urgently, desperately needed to end his life on his own terms.
My phone would ring in my Brooklyn apartment.
“Dad?”
“You have to help me die today, Rachel. I need to die today, please.”
“I can’t help you die today, Dad.”
“Rachel, please, you have to help me.”
This is how it went, day after day, sometimes several times a day, until my brother realized that in California, where they live, it was legal for my father to choose to end his own life.
And that is how I found myself at my father’s bedside in Los Angeles, supporting him as he took his own life, as his daughter and as his rabbi.
Judaism holds life sacred. In Genesis, when creating humans, G-d sees that it is very good. G-d creates us in G-d’s own image and breathes life into human beings, giving human life supreme value. The Mishnah teaches that saving one life is like saving an entire world. Pikuach nefesh (saving a life) supersedes all other mitzvot, except those forbidding murder, adultery, and idolatry. This love of life is the foundation of Jewish ethics and has led our tradition to stand firmly against any action that would lead to death.
Thus we read in the “Comprehensive Guide to Medical Halakha,” published in 1990 by Abraham S. Abraham:
“One may not hasten a death, even that of a patient who is suffering greatly and for whom there is no hope of a cure, even if the patient asks that this be done. To shorten the life of a person, even a life of agony and suffering, is forbidden.”
And in “Modern Medicine and Jewish Ethics” by Fred Rosner in 1991:
“Any positive act designed to hasten the death of the patient is equated with murder in Jewish law …. only the Creator, who bestows the gift of life, may relieve man of that life, even when it has become a burden rather than a blessing.”
I am a rabbi. I know well Judaism’s ban on euthanasia. But when I understood that my father would take his own life, I knew without a doubt that I would be by his side. He had soldiered on in this life for 92 years, uncomplaining, to be there for us and for his grandchildren. Now he wanted to leave the world, and all I could do was honor his wishes.
As this became my father’s story, I began to inquire more deeply into our tradition and found voices questioning this consensus in Jewish law. For example, Rabbi Leonard Kravitz argues that the story of the torturous death of Rabbi Hananiah at the hands of the Romans, which is usually read as a proof-text for the ban on euthanasia, can equally be read to make the case that hastening death when death is inevitable is an act of mercy. Rabbi Kravitz argues that Jews who are terminally ill and suffering should be able to choose a mitah yafah, a good death, which Rashi defines as sheyamut maher, that they should die quickly, particularly given that the Talmud prescribes this kind of death for criminals who will be executed by the court. If criminals deserve a good death, a death in which they are spared long, slow agony and suffering, Rabbi Kravitz argues, shouldn’t those who’ve committed no crime be allowed to choose this as well?
I raise this now in this public forum because my sister has made a film about my father’s death called “Last Flight Home,” and her film is premiering at the Sundance Film Festival today. In the film, viewers will see me, acting as a daughter and also a rabbi, loving and supporting my father as he ends his own life. I am aware that this will be upsetting and even offensive to many in the Jewish community. I do not wish to create controversy on this issue, and I would not have chosen to make this film. I would not have chosen for my father’s death to be viewed by the public at all, and I would not have chosen to champion this issue. But I have cared for others who desperately wished for this choice at the end of their lives, and I think it might be time for the Jewish people to reconsider our views on this important matter.
March 3rd will be my father’s first yahrzeit. May his memory forever be a blessing.
The reports from covid-19 patients are disconcerting. Only a few hours before, they were enjoying a cup of pungent coffee or the fragrance of flowers in a garden. Then, as if a switch had been flipped, those smells disappeared.
Young and old alike are affected — more than 80% to 90% of those diagnosed with the virus, according to some estimates. While most people recover in a few months, 16% take half a year or longer to do so, research has found. According to new estimates, up to 1.6 million Americans have chronic smell problems due to covid.
Seniors are especially vulnerable, experts suggest. “We know that many older adults have a compromised sense of smell to begin with. Add to that the insult of covid, and it made these problems worse,” said Dr. Jayant Pinto, a professor of surgery and specialist in sinus and nasal diseases at the University of Chicago Medical Center.
Recent data highlights the interaction between covid, advanced age and loss of smell. When Italian researchers evaluated 101 patients who’d been hospitalized for mild to moderate covid, 50 showed objective signs of smell impairment six months later. Those 65 or older were nearly twice as likely to be impaired; those 75 or older were more than 2½ times as likely.
Most people aren’t aware of the extent to which smell can be diminished in later life. More than half of 65- to 80-year-olds have some degree of smell loss, or olfactory dysfunction, as it’s known in the scientific literature. That rises to as high as 80% for those even older. People affected often report concerns about safety, less enjoyment eating and an impaired quality of life.
But because the ability to detect, identify and discriminate among odors declines gradually, most older adults — up to 75% of those with some degree of smell loss — don’t realize they’re affected.
A host of factors are believed to contribute to age-related smell loss, including a reduction in the number of olfactory sensory neurons in the nose, which are essential for detecting odors; changes in stem cells that replenish these neurons every few months; atrophy of the processing center for smell in the brain, called the olfactory bulb; and the shrinkage of brain centers closely connected with the olfactory bulb, such as the hippocampus, a region central to learning and memory.
Also, environmental toxic substances such as air pollution play a part, research shows. “Olfactory neurons in your nose are basically little pieces of your brain hanging out in the outside world,” and exposure to them over time damages those neurons and the tissues that support them, explained Pamela Dalton, a principal investigator at the Monell Chemical Senses Center, a smell and taste research institute in Philadelphia.
Still, the complex workings of the olfactory system have not been mapped in detail yet, and much remains unknown, said Dr. Sandeep Robert Datta, a professor of neurobiology at Harvard Medical School.
“We tend to think of our sense of smell as primarily aesthetic,” he said. “What’s very clear is that it’s far more important. The olfactory system plays a key role in maintaining our emotional well-being and connecting us with the world.”
Datta experienced this after having a bone marrow transplant followed by chemotherapy years ago. Unable to smell or taste food, he said, he felt “very disoriented” in his environment.
Common consequences of smell loss include a loss of appetite (without smell, taste is deeply compromised), difficulty monitoring personal hygiene, depression and an inability to detect noxious fumes. In older adults, this can lead to weight loss, malnutrition, frailty, inadequate personal care, and accidents caused by gas leaks or fires.
Jerome Pisano, 75, of Bloomington, Illinois, has been living with smell loss for five years. Repeated tests and consultations with physicians haven’t pinpointed a reason for this ailment, and sometimes he feels “hopeless,” Pisano admitted.
Before he became smell-impaired, Pisano was certified as a wine specialist. He has an 800-bottle wine cellar. “I can’t appreciate that as much as I’d like. I miss the smell of cut grass. Flowers. My wife’s cooking,” he said. “It certainly does decrease my quality of life.”
Smell loss is also associated in various research studies with a higher risk of death for older adults. One study, authored by Pinto and colleagues, found that older adults with olfactory dysfunction were nearly three times as likely to die over a period of five years as seniors whose sense of smell remained intact.
“Our sense of smell signals how our nervous system is doing and how well our brain is doing overall,” Pinto said. According to a review published earlier this year, 90% of people with early-stage Parkinson’s disease and more than 80% of people with Alzheimer’s disease have olfactory dysfunction — a symptom that can precede other symptoms by many years.
There is no treatment for smell loss associated with neurological illness or head trauma, but if someone has persistent sinus problems or allergies that cause congestion, an over-the-counter antihistamine or nasal steroid spray can help. Usually, smell returns in a few weeks.
For smell loss following a viral infection, the picture is less clear. It’s not known, yet, which viruses are associated with olfactory dysfunction, why they damage smell and what trajectory recovery takes. Covid may help shine a light on this since it has inspired a wave of research on olfaction loss around the world.
“What characteristics make people more vulnerable to a persistent loss of smell after a virus? We don’t know that, but I think we will because that research is underway and we’ve never had a cohort [of people with smell loss] this large to study,” said Dalton, of the Monell center.
Some experts recommend smell training, noting evidence of efficacy and no indication of harm. This involves sniffing four distinct scents (often eucalyptus, lemon, rose and cloves) twice a day for 30 seconds each, usually for four weeks. Sometimes the practice is combined with pictures of the items being smelled, a form of visual reinforcement.
The theory is that “practice, practice, practice” will stimulate the olfactory system, said Charles Greer, a professor of neurosurgery and neuroscience at Yale School of Medicine. Although scientific support isn’t well established, he said, he often recommends that people who think their smell is declining “get a shelf full of spices and smell them on a regular basis.”
Richard Doty, director of the University of Pennsylvania’s Smell and Taste Center, remains skeptical. He’s writing a review of smell training and notes that 20% to 30% of people with viral infections and smell loss recover in a relatively short time, whether or not they pursue this therapy.
“The main thing we recommend is avoid polluted environments and get your full complement of vitamins,” since several vitamins play an important role in maintaining the olfactory system, he said.
— A Geriatrician Learns the Emotional and Physical Toll of Caregiving
Dr. Rebecca Elon’s life took an unexpected turn in 2013 when she noticed personality changes and judgment lapses in her husband, Dr. William Henry Adler III. He was eventually diagnosed with frontotemporal dementia with motor neuron disease and died in February.
The loss of a husband. The death of a sister. Taking in an elderly mother with dementia.
This has been a year like none other for Dr. Rebecca Elon, who has dedicated her professional life to helping older adults.
It’s taught her what families go through when caring for someone with serious illness as nothing has before. “Reading about caregiving of this kind was one thing. Experiencing it was entirely different,” she told me.
Were it not for the challenges she’s faced during the coronavirus pandemic, Elon might not have learned firsthand how exhausting end-of-life care can be, physically and emotionally — something she understood only abstractly previously as a geriatrician.
And she might not have been struck by what she called the deepest lesson of this pandemic: that caregiving is a manifestation of love and that love means being present with someone even when suffering seems overwhelming.
All these experiences have been “a gift, in a way: They’ve truly changed me,” said Elon, 66, a part-time associate professor at Johns Hopkins University School of Medicine and an adjunct associate professor at the University of Maryland School of Medicine.
Elon’s uniquely rich perspective on the pandemic is informed by her multiple roles: family caregiver, geriatrician and policy expert specializing in long-term care. “I don’t think we, as a nation, are going to make needed improvements [in long-term care] until we take responsibility for our aging mothers and fathers — and do so with love and respect,” she told me.
Elon has been acutely aware of prejudice against older adults — and determined to overcome it — since she first expressed interest in geriatrics in the late 1970s. “Why in the world would you want to do that?” she recalled being asked by a department chair at Baylor College of Medicine, where she was a medical student. “What can you possibly do for those [old] people?”
Elon ignored the scorn and became the first geriatrics fellow at Baylor, in Houston, in 1984. She cherished the elderly aunts and uncles she had visited every year during her childhood and was eager to focus on this new specialty, which was just being established in the U.S. “She’s an extraordinary advocate for elders and families,” said Dr. Kris Kuhn, a retired geriatrician and longtime friend.
In 2007, Elon was named geriatrician of the year by the American Geriatrics Society.
Her life took an unexpected turn in 2013 when she started noticing personality changes and judgment lapses in her husband, Dr. William Henry Adler III, former chief of clinical immunology research at the National Institute on Aging, part of the federal National Institutes of Health. Proud and stubborn, he refused to seek medical attention for several years.
Eventually, however, Adler’s decline accelerated and in 2017 a neurologist diagnosed frontotemporal dementia with motor neuron disease, an immobilizing condition. Two years later, Adler could barely swallow or speak and had lost the ability to climb down the stairs in their Severna Park, Maryland, house. “He became a prisoner in our upstairs bedroom,” Elon said.
By then, Elon had cut back on work significantly and hired a home health aide to come in several days a week.
In January 2020, Elon enrolled Adler in hospice and began arranging to move him to a nearby assisted living center. Then, the pandemic hit. Hospice staffers stopped coming. The home health aide quit. The assisted living center went on lockdown. Not visiting Adler wasn’t imaginable, so Elon kept him at home, remaining responsible for his care.
“I lost 20 pounds in four months,” she told me. “It was incredibly demanding work, caring for him.”
Meanwhile, another crisis was brewing. In Kankakee, Illinois, Elon’s sister, Melissa Davis, was dying of esophageal cancer and no longer able to care for their mother, Betty Davis, 96. The two had lived together for more than a decade and Davis, who has dementia, required significant assistance.
Dr. Rebecca Elon’s sister Melissa Davis (right) was the primary caretaker for their mother, Betty Davis, for the past 10 years. But new living arrangements had to be made for their mother when Melissa Davis died of esophageal cancer in May 2020.
Elon sprang into action. She and two other sisters moved their mother to an assisted living facility in Kankakee while Elon decided to relocate a few hours away, at a continuing care retirement community in Milwaukee, where she’d spent her childhood. “It was time to leave the East Coast behind and be closer to family,” she said.
By the end of May, Elon and her husband were settled in a two-bedroom apartment in Milwaukee with a balcony looking out over Lake Michigan. The facility has a restaurant downstairs that delivered meals, a concierge service, a helpful hospice agency in the area and other amenities that relieved Elon’s isolation.
“I finally had help,” she told me. “It was like night and day.”
Previously bedbound, Adler would transfer to a chair with the help of a lift (one couldn’t be installed in their Maryland home) and look contentedly out the window at paragliders and boats sailing by.
“In medicine, we often look at people who are profoundly impaired and ask, ‘What kind of quality of life is that?’” Elon said. “But even though Bill was so profoundly impaired, he still had a strong will to live and retained the capacity for joy and interaction.” If she hadn’t been by his side day and night, Elon said, she might not have appreciated this.
Meanwhile, her mother moved to an assisted living center outside Milwaukee to be nearer to Elon and other family members. But things didn’t go well. The facility was on lockdown most of the time and staff members weren’t especially attentive. Concerned about her mother’s well-being, Elon took her out of the facility and brought her to her apartment in late December.
For two months, she tended to her husband’s and mother’s needs. In mid-February, Adler, then 81, took a sharp turn for the worse. Unable to speak, his face set in a grimace, he pounded the bed with his hands, breathing heavily. With hospice workers’ help, Elon began administering morphine to ease his pain and agitation.
“I thought, ‘Oh, my God, is this what we ask families to deal with?’” she said. Though she had been a hospice medical director, “that didn’t prepare me for the emotional exhaustion and the ambivalence of giving morphine to my husband.”
Elon’s mother was distraught when Adler died 10 days later, asking repeatedly what had happened to him and weeping when she was told. At some point, Elon realized her mother was also grieving all the losses she had endured over the past year: the loss of her home and friends in Kankakee; the loss of Melissa, who’d died in May; and the loss of her independence.
That, too, was a revelation made possible by being with her every day. “The dogma with people with dementia is you just stop talking about death because they can’t process it,” Elon said. “But I think that if you repeat what’s happened over and over and you put it in context and you give them time, they can grieve and start to recover.”
“Mom is doing so much better with Rebecca,” said Deborah Bliss, 69, Elon’s older sister, who lives in Plano, Texas, and who believes there are benefits for her sister as well. “I think having [Mom] there after Bill died, having someone else to care for, has been a good distraction.”
And so, for Elon, as for so many families across the country, a new chapter has begun, born out of harsh necessities. The days pass relatively calmly, as Elon works and she and her mother spend time together.
“Mom will look out at the lake and say, ‘Oh, my goodness, these colors are so beautiful,’” Elon said. “When I cook, she’ll tell me, ‘It’s so nice to have a meal with you.’ When she goes to bed at night, she’ll say, ‘Oh, this bed feels so wonderful.’ She’s happy on a moment-to-moment basis. And I’m very thankful she’s with me.”
The late Cloris Leachman delivers a touching swansong in this small-scale Canadian drama
Jump, Darling, with Cloris Leachman and Thomas Duplesses
By Allan Hunter
The late Cloris Leachman remains an inveterate scene stealer in Jump, Darling, a small-scale drama that provides her with a touching swansong. Phil Connell’s compact tale of a young drag queen’s emotional travails finds its heart in the chemistry between Leachman and co-star Thomas Duplessie. LGBTQ festivals should provide some traction for a modest tale that will feel at home on domestic screens.
Every time she appears, Leachman adds an extra zing to the proceedings
Writer/director Connell wastes little time in scene-setting, instead propelling us into the world of aspiring actor Russell (Duplessie) who has found a second wind and a potential new career as Toronto drag queen Fishy Falters.
His commitment to drag provokes a parting of the ways with wealthy, status conscious boyfriend Justin (Andrew Bushell). After a disastrous appearance at Peckers night club, Russell decides to leave town and take temporary sanctuary with his elderly grandmother Margaret (Leachman) in Prince Edward County.
Margaret is all too aware of her frailties and forgetfulness but remains determined to avoid becoming a resident at the local Millbrook Care Home. Russell’s arrival could be the solution to her problem.
Jump, Darling travels along predictable roads as family secrets are revealed, ghosts of the past confronted and separate generations discover the strength to be true to themselves. What makes the journey worthwhile are the performances. Leachman completed two further films before her death earlier this year aged 94. This is her last starring role. She is physically frail but delivers a sardonic one-liner with impeccable comic timing and brings out the poignancy in a spirited, frightened woman whose final wish is to have a good death in her own home. Every time she appears, Leachman adds an extra zing to the proceedings and it feels as if the film belongs to Margaret.
Russell may be trying to figure out his future but there feels less at stake for his character as he dallies with elusive bartender Zacahry (Kwaku Adu-Poku) and brings his drag persona to brighten up local bar Hannah’s Hovel.
Duplessie makes a convincing drag artiste. There is some of the relish of Tim Curry’s Frank n Furter in his Fishy Falters and Connell captures his committed lip-synching performances with dynamic camerawork and sharp editing. The film also features appearances from real life Toronto drag acts Tynomi Banks, Fay Slift and Miss Fiercalicious.
Cinematographer Viktor Cahoj conveys the charms of this wine country corner of rural Canada that are compiled into attractive montages. It is a promising first feature but the characters surrounding Russell are thinly drawn, especially Justin and Zachary. Russell’s exasperated mother Ene (Linda Kash) seems to exist merely to chide and then reconcile.
Connell’s need to keep the narrative forever moving forward comes at a cost. Jump, Darling has a trim running time but a little more complexity or contemplation would have been welcome. The lack of depth in the supporting characters is more apparent when the focus returns to the emotional plight of Margaret in her final days which feels very real and very moving.
