— A husband tries to strike a balance between living in the present and contemplating the future as his wife’s Alzheimer’s disease progresses
“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.
“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.
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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.
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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Dementia: How long can a person live without eating or drinking?
By Belinda Weber
Many people living with the later stages of dementia may not eat or drink. They may also develop dysphagia, which prevents them from swallowing effectively. How long a person can live without food and liquids varies, but doctors believe that sufficient end of life care may help improve their quality of life.
Dementia refers to a group of neurocognitive conditions that can permanently damage the brain. Alzheimer’s disease is the most common type, accounting for between 60% and 80% of dementia cases, according to the Alzheimer’s Association.
This article explains why someone living with dementia may stop eating and drinking. It also suggests ways carers can support them.
There are many reasons a person may stop eating and drinking. As a neurocognitive disorder progresses, most people become less active and do not need to consume as many calories.
According to the National Foundation of Swallowing Disorders, at least 45% of people living with dementia also experience dysphagia, which refers to difficulty swallowing. This can cause a person to be unable to consume adequate nutrition and liquids.
People living with dementia may also notTrusted Source be as diligent about their oral hygiene as they once were. This can cause them to have sore mouths, teeth with infections, or ill-fitting dentures.
Another reason may be that the damage in the brain has spread to the hypothalamus, the area that regulatesTrusted Source food intake. Alternatively, it could be that the person no longer recognizes things as food or forgets about eating.
Age can also play a part as the muscles involved in swallowing lose mass, resulting in a loss of strength and range of motion. The person may feel as if they are choking on food or cannot move it out of their mouth.
No one can say for sure how long someone can survive without eating or drinking, as it involves many factors. These include the person’s age, overall health, and how well their immune system can fight infections.
If someone has dysphagia, this can indicate that their neurocognitive disorder is progressing, as dysphagia usually occurs in the later stages. This increases the risk of a person inhaling food or liquid, leadingTrusted Source to chest infections.
While it is impossible to predict exactly how long someone can live without eating or drinking, having dysphagia can mark the beginning of end of life careTrusted Source.
People living with a neurocognitive disorder may benefit from end of life care for days, weeks, months, or years.
Artificial nutrition and hydration (ANH) is a procedure where doctors deliver nutrients and fluids intravenouslyTrusted Source into a person’s body via a tube. This tube runs into the stomach from the nose or a device fitted into the stomach.
However, these doctors need to administer these treatments in a medical setting, and many people with a neurocognitive disorder find the experience distressing. Some individuals may try to remove the tubes.
Doctors do not agree about recommending ANH for people living with late stage dementia as it is unclear whether it provides any overall benefits.
The American Speech-Language-Hearing Association notes that tube feeding does not improve the quality of life of a person with a diagnosis of dementia. Additionally, it states that tube feeding does not reduce their risk of developing a chest infection.
The Alzheimer’s Association recommends people living with a neurocognitive disorder plan their late stage care while they can still express themselves and make decisions. This can include whether or not they want ANH.
When someone living with dementia is nearing death, they tend to deteriorate more rapidly. They may develop incontinence and agitation.
According to the United Kingdom’s Alzheimer’s Society, signs that death is near for someone living with dementia include:
- loss of consciousness
- irregular breathing
- restlessness
- rattly sound in the chest
- cold hands and feet
A 2019 study listed pneumonia as the cause of death for 50%Trusted Source of people who required hospital care due to dementia.
Doctors recommend helping someone eat and drink for as long as they can, even if they eat in small amounts. The Alzheimer’s Association suggests:
- offering soft foods
- thickening liquids with cornstarch or unflavored gelatin
- alternating bites of food with sips of drink
- offering sherbet or ice cream
- serving finger food if someone has difficulties using cutlery
- helping the person sit in an upright and comfortable position
Many people living with a neurocognitive disorder may stop eating and drinking. This may be due to infections, but it may also result from individuals experiencing swallowing difficulties.
Swallowing difficulties, or dysphagia, often indicates that the person’s neurocognitive disorder is progressing and may have reached the later stages.
Doctors believe that the person’s body adjusts to the reduced food and liquid intake and that people do not feel hunger or thirst.
Swallowing difficulties increase the risk of inhaling food particles or fluids, which can lead to chest infections, including pneumonia.
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Race and ethnicity affect end-of-life care for dementia patients
— More than half of Medicare beneficiaries are diagnosed with dementia during their lifetime and, of those diagnosed who receive intensive end-of-life care, most are from racial and ethnic minority groups, according to a new study.
Intensive treatment includes mechanical ventilation, intubation, feeding tube initiation, and new dialysis.
Researchers have known that race and ethnicity play a role in the intensity of medical care at the end of life, but the difference is more pronounced among individuals with dementia, they say.
“Dementia appears to have a multiplicative effect,” says Elizabeth Luth, an assistant professor in the family medicine and community health department at Rutgers University and lead author of the study published in the Journal of the American Geriatrics Society.
“This difference is not problematic if it reflects patient preferences for intensive services,” says Luth, who is also a faculty member at Rutgers’ Institute for Health, Health Care Policy & Aging Research. “However, additional research is needed to understand whether these differences may be attributable to other factors, including systemic racism, discrimination, poor physician communication, and other barriers to accessing health care.”
To measure the role of race and ethnicity in end-of-life care for people with dementia, Luth and colleagues calculated total medical costs for 463,590 Medicare beneficiaries nationwide. Using claims data, the researchers tallied inpatient, outpatient, carrier, skilled nursing facility, and hospice expenditures for patients’ final 30 days of life. Higher costs indicated greater care intensity.
In addition to determining 51% of Medicare patients die with a dementia diagnosis claim, the researchers made another discovery: Race and ethnicity may influence how people with dementia live out their final days.
“While people with dementia received intensive services less often than people without dementia, those with dementia who did receive intensive services were more likely to be from racial or ethnic minoritized groups,” Luth says.
The magnitude of this effect differed by dementia status. For example, among people without dementia, compared to non-Hispanic Whites, Asian American, and Pacific Islanders had 73% higher odds of intensive care at the end of life. However, among persons with a dementia diagnosis, Asian American and Pacific Islanders had 175% higher odds of receiving intensive procedures.
The findings should prompt efforts to improve end-of-life care and outcomes for people with dementia, Luth says. Medicare reimbursements for physician-led advance care planning conversations could help, she says, as would end-of-life care counseling for all hospitalized patients.
“In the absence of a designated decision maker, the default approach in end-of-life care is to provide intensive services,” Luth says.
“If there isn’t anybody advocating either way, whether it’s the family or the patient themselves, the default is always more hospitalization, which might not be the type of care the patient wants or needs.”
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After a Dementia Diagnosis
— Preparing for the Future
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.
Consider meeting with an elder law attorney in your area to discuss your plans for your future.
For additional support and to learn more about Alzheimer’s disease and related disorders, reach out to your local Alzheimer’s Association chapter.
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Dementia in Prison Is Turning into an Epidemic
— The U.S. Penal System Is Badly Unprepared
Older prisoners will make up a third of the prison population in a decade, and many of them will develop dementia
By Sara Novak
Terrell Carter remembers one prisoner in particular. They had both been seeking commutations of their life sentence so they could eventually apply for parole. But Carter says that in the midst of the process, his fellow inmate became so debilitated with dementia that the man could no longer function well enough to complete the paperwork.
Within a few months, Carter says, this prisoner was incapacitated, lying in bed with arms outstretched over his head, calling for help. Carter, an inmate who volunteered in the hospice ward of State Correctional Institution Phoenix in Collegeville, Penn., says that his fellow prisoner languished and eventually perished in prison because he was too mentally impaired to file for forgiveness. “By the end, he didn’t know the crime he was charged with committing,” Carter says
In the October 2021 issue of Northwestern University Law Review, Carter, along with Drexel University associate professor of law Rachel López, argue that the current sentencing structure all too often locks people up and throws away the key. A former commissioner on Pennsylvania’s sentencing board, López is especially concerned with the number of elderly people who are incarcerated. “It’s all part of the legacy of the ‘tough on crime’ era,” she says.
A survey by the Pew Charitable Trusts found that the number of inmates age 55 or older increased by 280 percent from 1999 to 2016. Three-strikes laws and mandatory life sentences without the possibility of parole expanded during the 1980s and 1990s, and many of these laws are still on the books today. As the number of aging prisoners balloons, so, too, do instances of dementia. An article López authored in the June 2020 issue of Federal Sentencing Reporter projected that between 70,341 and 211,020 of the estimated 400,000 incarcerated elderly in 2030 will develop dementia. Alzheimer’s disease is the most common diagnosis, but dementias that involve Lewy bodies, the vascular system and Parkinson’s disease are also on the list.
Prison may also accelerate aging and the possibility of developing the disease, according to a January 2022 article published in the journal Health & Justice. Study author Bryce Stoliker, a researcher at the University of Saskatchewan, says that the high risk is because of challenges faced in prison life—and inmates’ experiences before incarceration. Prisoners are often marginalized members of society with less access to health care, poorer diet, issues with alcohol or drug misuse, mental health problems and potential traumatic brain injuries—all factors that increase the likelihood of developing the condition. “Once behind bars, a lack of stimulation and an overall poor quality of life magnifies the problem,” Stoliker says.
Prisoners with dementia are also vulnerable to abuse. Their erratic behavior and inability to follow directions is aggravating to other prisoners and to the staff in an already tense and sometimes violent environment, says Tina Maschi, co-author of the book Aging Behind Prison Walls: Studies in Trauma and Resilience.
A 2012 study she authored in the Gerontologist found that those with dementia are increasingly vulnerable to “victimization.” If they become aggressive toward staff or can’t stay in line, they’re more likely to be reprimanded. “They’re no longer in touch with the prison rules, and as a result, it appears to staff, who often aren’t trained in dealing with dementia patients, that they’re acting out,” Maschi says. Additionally, according to the study, they can become victims of sexual assault by other prisoners because they can’t defend themselves.
With strict sentencing practices still in place, the problem could get worse. The American Civil Liberties Union projects that in a decade, prisoners age 55 and older will make up one third of the U.S. incarcerated population. And prisons, López says, don’t have the resources to tend to this highly vulnerable population. Still, there may be some relatively available short-term solutions. Older prisoners are often housed together, but senior structured living programs that include daily stimulation such as puzzles, knitting and cognitive exercises may help to reduce the risk of elderly prisoners who get dementia later on.
True Grit, a program at Northern Nevada Correctional Center, is described in a review published in the December 2019 issue of Health & Justice. It teaches inmates older than age 55 skills such as latch rug making, crocheting, painting, jigsaw puzzle making and beading, as well as emphasizing the importance of physical exercise. The program has been shown to increase inmate quality of life, reduce medication use and behavioral problems, and enhance overall health and well-being.
Compassionate release is another tool that is largely underutilized, according to experts. Also called “geriatric parole,” it’s currently used once patients get to the end of their life. But for the program to reduce the elderly burden on the prison system, it would have to be used before inmates are so ill that they can no longer be integrated back into society. Once prisoners are too far gone, says Ronald Aday, author of the book Aging Prisoners: Crisis in American Corrections, it’s much harder for them to find “a place to land” outside of prison, and nursing homes are unlikely to admit a felon. Still, a 2018 report from Families Against Mandatory Minimums (FAMM) found that the program is rarely used and that, in many states, it presents aging inmates with a troubling “number of barriers” to getting out.
When inmates do develop dementia, prison workers, at a minimum, need to be provided with basic training to deal with the disease. “Correctional staff and those in direct daily contact with older prisoners need to understand both their vulnerability to other inmates and their inability to understand orders,” Aday says.
Looking ahead, dementia wards in prison may be needed to house prisoners with cognitive problems. One such memory ward opened in 2019 at Federal Medical Center Devens in Massachusetts. The facility staff is specially trained to take care of those with dementia.
But building dementia wards in prisons shines a spotlight on a larger issue: prisons are not properly equipped to house these patients because this was never their purpose in the first place. “The original intent of prison was to rehabilitate,” Aday says. “Correctional institutes were meant to ‘correct people’ so they could go back out and work.” Somewhere along the way, he adds, we’ve lost our purpose, and as a result, 10-year sentences have tripled, and life in prison without the possibility of parole is all too common. If we don’t get ahold of our out-of-balance sentencing structure, Aday says, we’ll never be able to really address the issue.
Carter, now age 53, feels lucky that he made it out “by the skin of his teeth.” After graduating from Villanova University and spending years taking care of elderly inmates, he was able to commute his sentence to life with parole for a robbery that he says went terribly wrong when he was 22 years old. Last July he was released after spending three decades in maximum-security prison.
Still, Carter is haunted by those he left behind, especially in the hospice ward. He says by the end of their life, most of them don’t even realize where they are, let alone what got them there. “You gotta wonder what kind of punishment it is if you don’t even know you’re in prison,” Carter says.
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We all deserve a good death
– especially people living with dementia
On International Nurses Day (May 12), I commend the contribution made by all nurses involved in the care of people living with dementia in residential, home and community care, in hospitals and through clinics and health centres.
By Maree McCabe
Dementia is a terminal illness and appropriate palliative care is an essential element of quality care and end of life care for people with dementia, and for their families and carers.
People living with dementia, their families and carers deserve specialist dementia support to plan for and manage their end of life with dementia.
While people living with dementia will unlikely to be able to communicate clearly at their end of life and we may never know how much they can hear, see, feel and comprehend at that time, we need to support them and include them in decisions about their care through the continuum of the disease right through to end of life.
People with dementia share with us they need to have confidence in the system and the people involved in their care because they know they may not have capacity at the end of life to express their wishes. They rely on their families, support networks and healthcare professionals to ensure they receive quality dementia care and experience a good death.
Caring for someone with dementia can be rewarding and emotionally, physically and financially challenging. Families and carers frequently report feeling stressed and confused as to how and where to access end of life care and services, and can feel pressured to make immediate decisions for their loved ones.
Dementia Australia is calling on all sides of politics to commit to a national dementia palliative care program modelled on an evidence-based, nurse-led model of palliative care already successful in South Australia.
The Nightingale Program is the leading specialist dementia palliative care program in Australia and with the support of a federal funding commitment could be expanded across the country.
I acknowledge the support of existing funders, The Rosemary Foundation for Memory Support and Country SA Primary Health Network Ageing Well in Place initiative.
The Nightingale Program clients have access to specialist nurses who provide palliative care strategies and advice to support those living with dementia and their families and care providers. There is a focus on promoting choice and well-being.
The specialist dementia nurses are trained to deliver a person-centred approach to enable people living with dementia to:
- Stay at home longer and maximise their independence
- Promote quality of life and positive relationships
- Have a voice in their future care options and decision making
- Avoid unnecessary presentations to acute hospital settings
- Access clinical advice, including co-morbidity management, pain management, delirium and palliation.
The many benefits of the Nightingale Program include:
- Specialist nursing advice
- Comprehensive and holistic nursing assessment, which will identify current issues and anticipate changing needs
- Referral to other service providers as needed
- Continuity of care, offering a single point of contact for guidance
- Advice provided in home, residential aged care, community and hospital settings
- Consultation in the development of advance care directives for future health care needs
- Education and emotional support to support family and carers
- Interdisciplinary teamwork throughout the health and care networks.
I call on all sides of politics to commit to expanding this program nationally to ensure all Australians living with dementia are supported by staff trained and qualified to provide dementia-specific palliative care.
Improving palliative care for people with dementia, no matter where they live, must be a policy priority Australia-wide to provide peace of mind for the almost half a million Australians living with dementia and the 1.6 million people involved in their care.
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