The death of a loved one is one of the hardest things an individual can go through, and there’s no set formula for how their grief will manifest itself.
Bereavement affects everyone differently, and at times it can leave you feeling bereft, alone, hopeless or angry.
The Coping with Bereavement guide from older people’s charity Independent Age reminds us that: “There’s no one way of grieving – everyone deals with bereavement differently. There’s no expected way you should be feeling or set time it will take for you to feel more like yourself again.”
And it’s not just our emotions that are in disarray after the death of a loved one, our bodies feel it, too. Like any other form of emotional stress, the body has a physical reaction which can further add to the sufferer’s distress.
With guidance from the team at Independent Age, here are the physical, emotional and behavioural symptoms of grief. It can be reassuring to know that what you are experiencing is normal, and that the symptoms of grief can be far-ranging. However, if you are worried about anything you are thinking or feeling, including physical symptoms, it’s a good idea to speak to your GP.
Physical symptoms of grief
People are often less aware of these, but grief can affect your body just as much as it can affect your emotions. This is related to the stress of the situation. Everyone is affected differently, but you might experience:
Aches and pains, such as chest pain and headaches.
Your feelings can be chaotic after a death and this can be overwhelming and sometimes frightening. However, this is usually normal and intense feelings tend to ease over time. Emotional symptoms can include:
Anxiety – including worries about your own mortality.
Relief – for example if someone died after a long illness.
Irritability – although family can be a source of support when you’re grieving, family quarrels are not uncommon after a death.
Feelings of detachment – these are particularly common in the period just after the death. You might feel detached from your life, but these feelings usually fade over time.
Depression and loneliness.
Behavioural impact of grief
Bereavement can also affect your behaviour. Again, you might expect some of these effects, such as being very tearful, but not others. You might experience:
Restlessness or hyperactivity – this can be a coping mechanism.
Inability to concentrate – you might be preoccupied with the death and go over and over what happened.
Disturbed sleep or nightmares – nightmares and flashbacks can be more common if someone has died through suicide or other traumatic death.
Loss of appetite or comfort eating – which can of course also cause physical changes to your weight.
WHAT CAN YOU DO TO HELP EASE GRIEF?
The Independent Age guide explains that it’s really important to be kind to yourself and do things that help you. This doesn’t mean ignoring your grief – allow yourself to feel sad and give yourself time to grieve and remember the person in your own way.
Allow yourself to also grieve for any secondary losses you may experience after a death, for example, having to move out of the family home or no longer having to maintain a role such as mother, wife, career etc.
1. Talk about it
Talking to others about the person who has died, your memories of them, and how you’re feeling can be very helpful. You might want to talk to:
New research from Independent Age has revealed that almost half (44%) of the sandwich generation (40-64 year olds) do not feel comfortable talking to their parents about death. However, according to the older generation surveyed (over 65s), 58% think it’s important to open up about death. Janet Morrison, Chief Executive of Independent Age says:
“It’s understandable that many people struggle to talk about death and final wishes. As a nation, we need to start embracing these conversations and promote a positive change in how we perceive and talk about this subject. We don’t expect this to change overnight, but it’s time to take action, be brave and talk about death.”
2. Books that might help
Many people find it consoling to read about other people’s experiences of grief. This can help us to process our grief and feel less alone in our experience. This could be particularly valuable in the early days after a death, when you might not feel ready to talk to others.
You can try:
1. Cruse Bereavement Care – Recommended reading list 2. The Compassionate Friends – Recommended reading list. The Compassionate Friends also operates a postal lending library. 3. Your local library 4. Your GP may also be able to recommend self-help resources. 5. Overcoming Grief, part of the Overcoming self-help series, endorsed by the Royal College of Psychiatrists.
3. Take practical steps
It’s easy to stop caring for yourself when you’re grieving, but a few simple things can help to make this period easier:
Try to get plenty of sleep.
Be kind to yourself and don’t put pressure on yourself to feel better too quickly.
Avoid numbing the pain too much with things like alcohol, which won’t help you in the long run.
Try to keep to a routine – it might feel easier to stop doing things and seeing people, but in the long run this can make you feel worse.
Try returning to activities you enjoyed before you were bereaved such as going for a walk, listening to music or swimming.
Find small things that help you feel better, like buying yourself flowers.
Approximately 64% of Americans don’t have a will. Are you one of them? If you pass away without a will, it means you have died “intestate.” When this occurs, the intestacy laws of the state will distribute your property at death. Dying without a will creates many hassles for your loved ones: A probate judge appoints your executor, you have no say in distributing your property, and a judge will decide who will raise your kids if they are minors, to name just a few.
The inflexible nature of intestacy rules will fail to account for special situations or unique circumstances. Serious problems can arise in situations with second marriages, and estates that pass by intestacy rules are more likely to become the subject of litigation.
Estate Documents Every Adult Should Have
Regardless of age, income or occupation, every adult should have the following estate planning documents:
Will: A will is the heart and soul of your estate plan. It will transfer your assets, appoint a guardian for minor children and name an executor—the individual or institution that takes charge of your estate after you die and distributes your property per your instructions.
Durable Power of Attorney: This document appoints a trusted friend, family member or advisor as an agent to act on your behalf in a variety of financial and legal matters. (For related reading, see: Power of Attorney: When You Need One.)
Health Care Proxy: Sometimes referred to as a health care agent or health care power of attorney, this document authorizes someone to make medical decisions on your behalf. You also may want to consider obtaining a living will (also called an advance directive), which expresses your preferences about certain aspects of end-of-life care. These issues may be covered in the health care proxy or in a separate document.
How to Obtain These Documents
The best way to get these documents drafted is through an estate planning attorney who practices in your state. If you know of one, call them and arrange a meeting. Once they learn about your overall situation and objectives, they may offer recommendations that go beyond the basic documents recommended in this article. Nothing beats personalized advice and planning from a specialist who thoroughly understands your situation and what you want to accomplish. If you don’t know an estate attorney, try to get a referral from a friend, family member or colleague.
If you can’t or don’t want to meet with an estate attorney for whatever reason, you have online options for drafting these documents, which is certainly better than doing nothing. Three of the more popular online resources for drafting estate planning documents are: Quicken Willmaker, Rocket Lawyer and Legal Zoom.
There is a famous expression: “You can prevent what you can foresee.” When you foresee the problems of dying intestate, you can prevent such problems by drafting the estate planning documents covered in this article while you are alive and well. If you’re one of the 64% of Americans without a will, what are you waiting for? The future is uncertain, so get started today!
While I enjoy almost every day of my job, I am often faced with formidable challenges. One of the most difficult challenges I encounter is discussing plans for end of life with family members, clients and my contemporaries.
During the course of life, most people are required to handle many stressful situations. One of the most stressful and life altering is dealing with the passing of a loved one. Even when families have had the forethought to discuss a shared plan and how to honor and execute the loved one’s wishes, managing emotions, fears and anxieties of family and friends can be tenuous.
When a loved one’s life nears its end, so many areas need to be addressed. Often, it is easy to become overwhelmed and, thus, become immobilized. However, for those who have chosen to accept that the end will eventually come and have taken the time to develop a thoughtful plan, much emotional pain can be spared.
Some of the specific topics that need to be addressed in developing a plan include:
“It is obviously one thing to write about what you should do to initiate these difficult, but necessary, discussions. However, it is quite another issue to face the reality of what to actually say when you are facing a loved one and thinking about how best to break the ice with the topic of death and dying.”
Where does the person wish to die, at home, a nursing home, hospital?
Who will be a caregiver until the very end? Will it be a family member or friend? Will they have the fortitude to assist properly? Will it be a homecare agency or hospice?
What do they want as far as medical intervention, and who is going to make sure the passing person’s wishing are going to be honored and run as smoothly as possible? (Don’t assume a spouse or child will be the best choice.)
Establish advanced directives and medical and financial powers of attorney.
For those who have not yet had to experience end-of-life discussions and planning, you will eventually. Don’t shy away from the hard discussions.
It is important to make time and find a place to begin discussions revolving around end-of-life issues. Maybe a group situation might make it easier, such as during a time when families gather together. These conversations can benefit from the “safety in numbers” theory and tend to be more philosophical than one-to-one situations.
Generally speaking, there are four steps to expressing end-of-life wishes:
1. Ask the right question.
2. Record those answers.
3. Discuss among the pertinent people (i.e., family members, loved ones, doctors, attorneys, etc.).
4. File documents. Make certain the important documents are filed on your computer, given to medical providers, family and anyone else who may be involved in advocating.
For those who would like to learn about which documents should be in place when planning for end of life, here are some to consider: advanced directives, living wills, medical durable power of attorney and do not resuscitate orders. Here in Colorado, the Colorado Advance Directives Consortium has made available a document called the Medical Orders for Scope of Treatment, which is designed to help you convey what your wishes are for medical care at the end of your life.
It is obviously one thing to write about what you should do to initiate these difficult, but necessary, discussions. However, it is quite another issue to face the reality of what to actually say when you are facing a loved one and thinking about how best to break the ice with the topic of death and dying.
Should you choose to further educate yourself, there are a number of resources available to assist in starting a conversation: Conversation Starter Kit (the conversationproject.org), Aging with Dignity (www.agingwith dignity.org) and Take Charge of your Life (www.takechargeofyour life.org) are just a few that you may want to look into.
When end-of-life discussions take place among doctors, family and patients, all the participants tend to feel better. Medical treatment is usually handled with more professionalism and is more effective. And, perhaps the most difficult to measure, the stress of such a difficult situation is drastically reduced.
“If there is a ‘war’ on cancer, and treatments and hopes for cures are portrayed as ‘fights’ in media, then societal beliefs may push men, in particular, to fight the disease over receiving palliative care,”
A small study has found that men with cancer were less likely than women to prefer palliative care if informed that continued treatment would not be helpful.
“These findings, which could partially account for the observed gender disparities in end of life care, underscore the need for future interventions to promote palliative care services among men,” Fahad Saeed, MD, University of Rochester School of Medicine and Dentistry, and colleagues wrote in the Journal of Pain and Symptom Management.
Prior research had shown that men and those with low educational attainment are more likely to still be receiving “curative” treatments weeks prior to death and are less likely to undergo palliative care or hospice. With this study, Saeed and colleagues hypothesized that these two groups would be less favorably disposed toward palliative care.
To test this hypothesis, they used data from 383 patients that were gathered in the Values and Options in Cancer Care (VOICE) study. In this study, patients were asked about their preferences for palliative care if they had been informed by their oncologist that further treatment would not be helpful. Palliative care was explained to the patients as care intended to provide comfort and improve the quality of life but not to cure.
Included patients ranged in age from 22 to 90 years, and 55.1% were women. The majority of the patients had also attended college.
Almost 80% of patients reported that they definitely (45.2%) or possibly (33.9%) would desire palliative care if informed that further treatment would not be helpful.
Women were about three times more likely to prefer palliative care compared with men (odds ratio [OR] = 3.07; 95% CI, 1.80–5.23). These odds decreased slightly in sensitivity analyses that accounted for additional covariates and ordinal regression.
“These gender differences may be explained by gender differences in role socialization,” the researchers wrote. “Men and women adopt beliefs about gender roles that reflect prevailing social norms. These beliefs guide decisions about socially acceptable and unacceptable attitudes such as being stoic, fearless, less expressive of symptoms, and invulnerable.”
“If there is a ‘war’ on cancer, and treatments and hopes for cures are portrayed as ‘fights’ in media, then societal beliefs may push men, in particular, to fight the disease over receiving palliative care,” they continued.
In contrast, the data did not support a greater preference for palliative care among those with more education. Patients with a high school education or less and those with a college education had comparable preferences for palliative care.
“It is not very likely, therefore, that education disparities in end-of-life care can be explained by education differences in preferences for palliative care,” the researchers wrote.
In addition, the study showed that older adults were less likely than younger ones to prefer palliative treatment (OR = 0.54; 95% CI, 0.31–0.94). To explain this, the researchers suggested that older patients may have a lack of knowledge about palliative care.
“In a survey of patients across the adult age range, more than three-quarters of the sample had never heard of palliative care,” Saeed et al said.
I live in a world filled with grief. My work dictates that I see it every day.
Grief is not universally the same for everyone. Professionally, I have observed that it is uniquely coded into a survivor’s collective history. It is personal with recovery predicated upon one’s abilities, strategies, and skills.
Although some would have you believe it is depression, ADHD, PTSD, a personality disorder, or some other pathological condition, it is not. It is a normal and natural reaction, albeit painful, to significant loss. It carries emotional, physical, and psychological consequences through interference into one’s comfort and health by reducing abilities to concentrate, sleep, and eat. It decreases one’s tolerance levels and coping skills and evokes fear in a multitude of facets. It imposes loneliness, creates insecurity, causes significant and immediate lifestyle changes, and at times catapults one into dire straits. In short, grief is a foe whose significance is based on the survivor’s reliance, depth of love, and/or responsibilities toward the deceased. It is the ultimate adversary to harmonious living. Additionally, one should not treat grief as a pathological condition through self-medicating or prescription drugs as these will only mask the pain, inviting illness to set in and disease to take hold.
Lack of resolution carries extreme consequences. If a survivor has compromised health or engages in a prescribed medical treatment for illness or disease, he/she would be well advised to avoid interference in their regime. A study of widowed persons found that the overall death rate for the surviving spouse doubled in the first week following the loss. Additionally, heart attacks more than doubled for male survivors and more than tripled for female survivors. Overall, surviving spouses were 93 percent more likely to get into fatal auto accidents and their suicide rate increased by 242 percent. (Mortality after Bereavement: A Prospective Study of 95,647 Widowed Persons, American Journal of Public Health 1987)
According to the US Census Bureau (USCB), 13 million survivors enter grief annually. Many of them suffer the pain of grief for 10 to 40 years. If grief-stricken survivors stack up over an average of 25 years, the number increases to 260 million suffering within the US borders. That is 80 percent of America’s population. “Thousands of mental health professionals report that although their clients come to them with other presenting issues, almost all of them have unresolved grief as their underlying problem.” (The Grief Recovery Method, Guide for Loss)
Unfortunately, many confuse Elizabeth Kubler-Ross’ study, a.k.a. “Kubler-Ross Model” on death and dying as the “Recovery Road Map” for survivors. The confusion lies in that her study concentrated on the stages of grief suffered by dying persons. She does not apply her findings to the survivor’s experience of recovery. In the blink of an eye, the survivor is faced with a very different scenario of life. He/she must instantly face the financial, physical, emotional, psychological, and spiritual realities and adjustments of survival after loss. The senseless association of the Kubler-Ross Model as grief recovery by universities and media has led to misinformation and confusion for those suffering grief.
To recover from grief, one must travel through it; not dance around it. We need smaller experiences of loss through earlier years from which to draw. The loss of a favorite toy, the death of a pet, or relocating and making new friends all serve as foundational experiences to prepare us for the ultimate loss of our loved ones. Unfortunately, society has robbed us of many of these foundational losses and recovery experiences. Many have never learned good sportsmanship by experiencing the disappointments of defeat while playing ball against their schoolmates as children. Others have never had to overcome relationship disappointments, as their friends are virtual rather than actual. The point is that our society is ill-prepared for the pain associated with loss. We live in a pseudo-reality filled with desensitizing scenarios of death. At some juncture, however, reality comes our way. One day, we will look at our electronics and feel-good scenarios and realize that whether we are prepared for it or not, we will participate in life based on the terms set forth by eternal laws of truth. That is the day that you will receive an unwelcome wake-up call into the pitfalls of adult realities, responsibilities, and crushing grief.
Do yourself a favor. Put down the electronics, the virtual realities, and the hyped up desensitizing entertainment programs sensationalizing violence and mass death. Doing so will allow you to experience life as it should be, with real joy, real fulfillment, and the ability to achieve meaningful recovery.
What happens when seniors who can’t recognize their own kids try to navigate the hazards of physical intimacy with one another? Zosia Bielski looks at the challenges for elderly people, nursing homes and families
By Zosia Bielski
When Karen Best abruptly lost her communications job at the age of 57, her family found it strange: she’d been a workaholic all her life. For a while, they assumed she was depressed, as she whiled away the hours watching cat videos online in her housecoat.
Within the year, Ms. Best was diagnosed with early-onset Alzheimer’s and frontotemporal dementia. By the time her family placed her in long-term care in Welland, Ont., Ms. Best had stopped calling her grandchildren by their names and lost most of her language. Staff would ask if she wanted a blueberry or a chocolate-chip muffin; she couldn’t reply.
Which made the phone call from the nursing home one month into Ms. Best’s stay all the more alarming: caregivers were anxious about her and a male resident. Staff needed her daughter, Cassandra Trach, to come in right away. “She had been found with no pants on, and he had no pants on, in his room,” said Ms. Trach, a 33-year-old account executive in the Niagara region. “This was something I was wholly unprepared for.”
Ms. Best and the elderly man would walk together, holding hands, and she would also seek him out for closer contact, according to staff. Like her, he was able-bodied but suffering from dementia. Ms. Best and her new companion were also both married – in Ms. Best’s case, for three decades – but had seemingly forgotten their spouses.
Every time nursing-home employees discovered the couple undressed together, they’d call Ms. Trach and her father, who jointly possess power of attorney for Ms. Best. “It felt like they wanted us to decide, do we let this relationship go and happen, or do we try to redirect?” Ms. Trach said. “It’s so grey. What do I do?”
For Ms. Trach, it was a painful predicament. Could her mother – an advanced dementia patient who sometimes couldn’t communicate what she wanted for breakfast – meaningfully consent to a new sexual relationship? Dementia had rendered most of her thoughts inscrutable, her desires opaque. Who could tell if she wanted or understood this?
Amid ever-widening cultural conversations about sexual consent, dementia remains uncharted territory. As Canadians live longer, more are moving into long-term care with advancing dementia disorders. It’s a growing population with complex needs, not least of all in their intimate lives.
In the close-quarters environment of nursing homes, these people’s sexuality poses difficult ethical dilemmas for staff and for families. Those who care for uniquely vulnerable dementia patients walk a fine tightrope. They have to protect their residents from sexual abuse while respecting their needs for human connection – and a private life.
This is proving challenging for Canadian caregivers. There is no unified strategy on sexuality and dementia in this country. No cognitive test exists to determine, once and for all, whether a person with Alzheimer’s can consent to sex or not.
Instead, nursing-home employees are often left on their own to decide whether their residents with dementia can consent to intimacy safely – even as residents’ awareness shifts from moment to moment, their speech recedes and their thoughts become difficult to access.
When poorly trained staffers are left to untangle such ethical knots, they can bring their own value judgments to bear. A prevailing squeamishness about elder sex can provoke alarmist reactions. The result is great inconsistency around dementia patients’ sexual lives in long-term care across Canada, a point that troubles Alzheimer’s advocates.
“It’s all over the map,” said Judith Wahl, a Toronto legal consultant who fielded complaints about homes for three decades as executive director of the Advocacy Centre for the Elderly and now educates long-term care staff across the country about consent and dementia.
In interviews, more than a dozen sources detailed questionable attitudes on the ground.
They described personal support workers seemingly making up policy on the fly, with some barring any kind of touch between residents, and others not paying close enough attention to their most defenceless patients and those who might exploit them.
“Homes should put their minds to looking at how they manage this,” Ms. Wahl said. “It’s really hard to do this well.”
Consent and capacity
Despite an ever-widening social reckoning around sexual consent, dementia presents a new frontier.
Just 28 per cent of Canadians fully understand what consent entails, according to research conducted earlier this year by The Canadian Women’s Foundation. Consent becomes decidedly more complicated when one or both people involved have dementia.
Just as a person’s sexual consent can quickly swing from “yes” to “no” during an intimate encounter, so can dementia patients’ abilities to recognize and navigate what’s happening around them.
“Consent is so challenging,” said Mary Schulz, director of education at the Alzheimer Society of Canada. “It’s a moving target. Our instruments for assessing that are quite blunt.”
The starting point is Canada’s sexual-consent law, which is no different for people living with dementia than it is for anybody else. The Criminal Code is clear: Consent can be spoken or unspoken, but it needs to be affirmative and happen in the moment; passivity cannot be construed as a “yes,” and nobody can consent (or dissent) on anyone else’s behalf, not even with power of attorney.
“With medical treatment, if you’re not competent, [the decision goes] to somebody else on the hierarchy – often a family member,” said Jane Meadus, a lawyer with the Advocacy Centre for the Elderly. “With sex, you can’t do that.”
Although the law is clear, it’s not always helpful within the context of nursing homes. Who determines “capacity to consent to sex” is not readily established in Canada. Often, it falls to personal-support workers to resolve the most critical questions: Do their residents with dementia understand what they’re doing, including the consequences? Can they pull back at any time?
With little consent training, staff aren’t always equipped to answer with full certainty.
Deepening the dilemma is the contradictory nature of the nursing home. These places are supposed to serve as patients’ homes, where they’d normally enjoy a private life. At the same time, these are highly monitored environments where every risk is mitigated. Caregivers have to prioritize safety and dignity simultaneously.
“They’re in a bind, because we’re not really good at telling them how to do that,” Ms. Meadus said.
At long-term care homes in most provinces, residents now have a “bill of rights” that allows them to receive visitors of their choice in private. Ontario and Prince Edward Island spell out residents’ rights to form relationships in care, even letting friendly residents share rooms. “Residents are treated with respect and dignity at all times, including during intimacy,” reads Nova Scotia’s patient bill of rights, the only document to use the word directly.
These philosophies represent a stark evolution from the oppressive old-age institutions of the past. But, even as residents’ rights are increasingly protected on paper, what happens on the ground doesn’t necessarily follow.
“It gets extremely tricky,” Ms. Meadus said. “You get some homes that have tried in the past to say, ‘Nobody can have sex, that’s it.’ And you get other homes where it’s laissez-faire: ‘As long as it feels good, they can do it.’ It is a very difficult balance that people are trying at, but we haven’t got it right yet.”
Advocates voiced concern about caregivers overstepping. They described religious staff members taking moral exception to LGBTQ patients and to residents having extramarital liaisons. They spoke of homes that have operated as “no sex zones,” where caregivers overzealous about their duty to protect patients have dissuaded them from engaging in all touch with one another, right down to holding hands. Staffers are afraid that such simple, comforting gestures might spiral into sexual abuse and liability.
They’ve got some cause for concern. Long-term care is one of the most highly regulated sectors in Canadian health care. Homes track everything and must report sexual abuse to their provincial ministries of health and long-term care, and to police. Ministries will cite homes if staff members fail to protect their residents from harm. Families of residents can also sue a home for damages; these cases are overwhelmingly settled out of court.
“The default position for long-term care staff – not necessarily rightly, but quite understandably – is in case of doubt, nobody touches, nobody hold hands, nobody is allowed to have sex,” said Ms. Schulz of the Alzheimer Society of Canada. “They go to that extreme position because they’re at a loss. But that is denying a person their human experience, which is just not on.”
On the other end of the spectrum, employees at more progressive homes don’t always consider the sexual risks as closely as they should, some legal advocates say. Ms. Wahl said she’s dealt with too many complaints about employees looking the other away, assuming the affection between two residents is mutual when it might not be. “Just because somebody’s old,” she said, “doesn’t mean that you just ignore the fact they could be sexually assaulted.”
Ms. Wahl rattles off what she’s seen. Some staffers will decide that a resident is seeking out sex because he or she walked into another resident’s room – this even as clinicians know that dementia patients often wander without aim. Other caregivers mistakenly assume that sex between a resident and visiting spouse is automatically consensual. This disregards Canada’s 1983 marital-rape law, which makes clear that even those married for decades need to get agreement from each other before having sex.
Ms. Wahl is most perturbed by family members infantilizing their elders. She said she’s seen many adult sons and daughters objecting to parents forming relationships in care. Sometimes, Ms. Wahl said, staffers hand over the sexual decision-making to these family members, assuming it’s the right thing to do because they have power of attorney.
“You can’t have substitute consent to sex,” Ms. Wahl cautioned, pointing to Canada’s sexual-assault laws.
Adult children can be the strictest gatekeepers. Many will try to stymie their parents’ late-in-life
relationships, lawyers and Alzheimer’s advocates say.
Children are rightly protective, but many are also simply recoiling from their parents’ sex lives.
“Unnerving” was the word Ms. Trach used as she fielded call after call about her mother being found undressed again with her new boyfriend at the nursing home in Welland. “What am I supposed to do with this information?” Ms. Trach asked, exasperated.
Even though staff reported that her mother encouraged the intimate relations, Ms. Trach was distressed. She wondered about her mom’s motivations for pursuing the man.
“Is she consenting to it because, like a teenage girl, she’s seeking approval? … Is she doing this because she’s lonely?” Ms. Trach asked. “How can you tell with someone with dementia?”
She got few answers. Balancing her mother’s need for affection with her safety was “agonizing.” In the end, the family did not interfere with the relationship, although they asked that the pair be monitored as closely as possible by staff.
“If this is something that gives them joy and happiness,” Ms. Trach said, “maybe we have to put our own discomfort aside.”
Along with the other adult children of parents with dementia who spoke with The Globe and Mail, Ms. Trach decided to speak out on behalf of her mother, who is now largely non-verbal, to spread awareness about the sensitive issues of consent and connection in long-term care homes. Ms. Trach said she went public so that nursing homes “are awesome by the time we have to live in them.”
Today, in old-age institutions and outside of them, deeply ageist aversion persists toward elderly adults and sex – never mind those beset by Alzheimer’s.
“It can seem kind of, almost obscene, in some people’s minds, to be thinking about sex when you’re talking about someone who’s perhaps cognitively impaired, elderly or physically frail,” Ms Schulz said. “And it can seem somehow irrelevant: ‘How can you even be thinking about this when we’re dealing with massive issues of cognitive decline?’”
The Alzheimer Society of Canada is in the midst of overhauling its resources for families and other caregivers on the issue of sexuality and dementia. It’s enlisted the help of Lori Schindel Martin, an outspoken associate professor at Ryerson University’s Daphne Cockwell School of Nursing.
At Canada’s first sexual-consent conference, held in 2016 at Trent University in Peterborough, Ont., Prof. Schindel Martin asked the next generation of nurses to consider what human touch means for residents’ well-being.
“Research tells us,” Prof. Schindel Martin told the audience, “that older people will have an increased quality of life, enhanced self-esteem and will heal from their depression because they connected with someone on a level that involves their skin.”
Prof. Schindel Martin took the opportunity to call out what she views as pervasive censorship of elderly people’s sexuality.
She laced her keynote with eye-opening composite cases from two decades spent on the front lines as a gerontology nurse working with dementia patients. There was the man who adorned his walls with framed Playboy centrefolds; nurses protested and refused to go into his room. Another woman would lift her skirt over her shoulders and proposition male residents, or “sailors” as she called them. And there was the husband who visited his wife every day from lunch till 7 p.m.; the housekeeper was shocked to walk in on him one day with his head between his wife’s legs.
They were visceral vignettes meant to illustrate the very real sexuality of older adults, as well as our profound unease around it. Speaking from her small, turquoise-blue office at Ryerson last April, Prof. Schindel Martin argued that ageism permeates everything about this issue: we see elderly people as asexual beings taking afternoon tea together, not pinning nude centrefolds to their walls.
The academic says we need a rethink. Pointing to nursing homes’ risk assessments, cognitive questionnaires and panicked phone calls to family, Prof. Schindel Martin wondered if anyone would ever subject randy first-year college students to any of this heavy-handedness.
“One’s humanity and capacity for relationships become examined very deeply in ways that we don’t do with other people,” Prof. Schindel Martin said. “What we’re able to control are older people … to remove them from each other and create rules.” (At Trent, she likened it to “killing a mosquito with a hammer.”)
Prof. Schindel Martin insisted that most of what she’s witnessed in clinical practice involved people seeking each other out for company, belonging and warmth. She wants stronger training so caregivers can better discern harmless courtship from more problematic sexual behaviour.
“We need to step back and rethink what could happen in our worst imaginings,” Prof. Schindel Martin said. “We don’t even have good prevalence incidence data about how often these things happen.”
Canada does not collect comprehensive data on sexual abuse perpetrated by residents against other residents in long-term care. A cross-country scan revealed many provinces lump together reports of all kinds of abuses – physical, verbal, financial and sexual. Most provinces also fail to differentiate between different types of abusers, counting exploitative residents, visitors and staff members all together. Provinces that did break out these statistics reported “founded investigations” and not all reports, meaning tallies appeared conspicuously low. (For example, between 2012 and 2017, Nova Scotia reported just 18 proven investigations of non-consensual sexual activity between residents in 135 long-term-care homes.)
What we do know is that Canada’s dementia population is swelling. The number of Canadians over 65 with dementia increased 83 per cent between 2002 and 2013, according to the Public Health Agency of Canada, which found that some 76,000 new cases are diagnosed every year in this country. Today, more than half a million Canadians are living with dementia, according to the Alzheimer Society of Canada. By 2031, that number will nearly double.
As baby boomers become caregivers to aging parents and round the corner into old age themselves, they want long-term-care options that actually feel like home, not the cold, controlled institutions of generations past. They want their rights recognized, including the freedom to enjoy intimate relationships in some semblance of privacy, the way you would at home.
Experts believe the way forward lies within a broader push for “person-centred” health care that focuses on knowing patients individually: if you don’t bother trying to know them or their needs, how can you help them? Person-centred care doesn’t solve all the difficult, sometimes inscrutable questions facing nursing-home staff about consent, capacity and dementia. It’s by no means a magic bullet, but experts believe it is, at the very least, a more empathetic approach that doesn’t stigmatize ailing, elderly people looking for human connection.
At Sherbrooke Community Centre, a long-term-care facility that houses 263 people in Saskatoon, chief executive Suellen Beatty said caregivers need to be “really good detectives,” who decipher the unmet needs of their residents – not who admonish them. Married residents trying to take up with others in the nursing home are often seeking love and attention, Ms. Beatty said. For them, help can take on many different forms: extra hugs from staff, more visits from a spouse or something tactile, such as pet therapy.
Ms. Beatty argued that caregivers should prioritize residents’ happiness instead of only seeing them as fragile. “We want to make this a risk-free world for people, and then we wonder why they disengage,” Ms. Beatty said. “We can make this so safe that we take all the joy out of life.”
Set amid woodlands and farmers’ fields in Stouffville, Ont., Bloomington Cove Care Community is another nursing home that bills itself as person-centred. Here, all of the 112 residents have dementia. Most are women in their 80s; there are just 28 men here.
Residents are encouraged to keep their familiar routines, waking up, showering and eating on their own clock. Bedrooms are private and filled with things from home – a favourite arm chair, ornately framed oil paintings, school portraits of grandchildren. Outside each room hang memory boxes, wood and glass curio cabinets filled with war memorabilia, weathered wedding photos and other treasures. Meant to stir recollection, the boxes also remind residents which room is theirs.
Many here are in the advanced stages of the disease. Some tire themselves out pacing, others hoard, hallucinate or grow depressed.
“It’s very hard to grow old,” said executive director Janet Iwaszczenko, walking the teal and beige halls.
For those suffering from frontotemporal dementia, the disease often impairs judgment and the ability to read context and social cues. People can become disinhibited around sex. Residents will occasionally mix up staff members for their spouses and require “redirecting.” Sometimes, residents will court each other. “There’s no filter,” Ms. Iwaszczenko explained. “There’s no understanding of social appropriateness.”
Things get especially tricky when residents who are married pair off with their nursing-home neighbours. These extramarital relationships often catch families off guard. Nurses and social workers observe residents, talk to them and to their spouses and relatives, documenting everything on residents’ charts.
“[Families] have a lot of upsets going through this horrible disease with someone they love,” Ms. Iwaszczenko said. “We talk about it. That’s the most important thing.”
On a sunny morning in April, staff gathered for a “risk huddle” in a glassed-in office looking out into a communal dining room. Registered practical nurse Mun Lee went over the pressing issues of the day: patients adjusting to new medication, protocols for changing bed linens and good hygiene practice (“long toenails must be trimmed,” Ms. Lee instructed).
An elderly man sailed past the windows, blowing kisses to staff through the glass. It was Denis Underhill, a sociable, 94-year-old Second World War veteran. Talk at the meeting turned to Mr. Underhill and another resident, 80-year-old Harriette Stretton. Both widowed, the two had been inseparable for three years. “They’re very in tune with each other,” Ms. Iwaszczenko said.
They’d share meals, walk the halls and sing old songs such as Easter Parade to each other. He’d talk about wanting to marry her, often. There were frequent hugs, kisses and naps. Ms. Lee raised the pair’s nap time at the staff huddle. “Close the door,” she said. “Give them privacy.”
Ms. Stretton and Mr. Underhill’s relationship came as a relief to their families.
“There seems to be an underlying sense of comfort that he knows he is not alone,” Mr. Underhill’s daughter, Nancy Beard, said.
Staff would phone Ms. Beard and Ms. Stretton’s daughter, Theresa Elvins – who have power of attorney – to let them know what was going on between the pair.
“There were a couple of instances where I’d get a call: ‘We found your mom and Denis in bed together.’ And I’m like, ‘Oh my god,’” Ms. Elvins recalled (Ms. Beard refers to it as “canoodling”).
Mr. Underhill’s health declined in the winter and Ms. Stretton’s recognition has grown spottier. “You can tell there’s a glimmer,” Ms. Elvins said. “She knows she should know us and that we’re familiar, but she couldn’t tell you that I’m her daughter.”
Asked if her mother was aware in her romantic relationship, Ms. Elvins was certain. “I knew that she had feelings for him,” she said. “I knew she was communicating what she felt, and not what she thought someone told her to feel.”
Today, the two infatuated elders remain together, although it’s never been clear whether they know each other’s names: they call each other “sweetie,” Ms. Elvins said.
“Even though they might not remember who you are, they still have feelings and needs just like anyone else.”
Although everyone experiences anticipatory grief—a feeling of loss before a death or dreaded event occurs—some have never heard of the term. I didn’t understand the power of anticipatory grief until I became my mother’s family caregiver. My mother suffered a series of mini strokes and, according to her physician, they equaled Alzheimer’s disease. I cared for my mother for nine years and felt like she was dying right before my eyes.
To help myself, I began to study anticipatory grief. While I cared for my mother I wrote a book on the topic. Writing a book parallel to my mother’s life was an unusual experience. Later, Dr. Lois Krahn, a Mayo Clinic psychiatrist, helped me with the final version. Our book, Smiling Through Your Tears: Anticipating Grief, was published in 2005.
Writing the book made me aware of the power of anticipatory grief and I went on AG alert. I had severe anticipatory grief when my husband’s aorta dissected in 2013. My husband was literally bleeding to death. Surgeons operated on him three times in a desperate attempt to stop the bleeding. Every time he went to surgery I thought it would be the last time I would see him.
My grief was so intense I began to plan his memorial service.
Although you realize you’re experiencing anticipatory grief, you may not understand its power. Here are some of the sources of that power.
Your thoughts jump around. You think about the past, the present, and a future without your loved one. These conflicting thoughts can make you worry about yourself. Friends may notice your distraction and think you have some sort of psychological problem. You don’t have a problem; you are grieving.
Every day is a day of uncompleted loss. If you are a long-term caregiver as I was, you wonder if your grief will ever end. Worse, you may wonder if you will survive such intense feelings. You may start to feel like anticipatory grief is tearing you apart.
The time factor can grind you down. Since you don’t know when the end will come, you are on constant alert. Friends may not understand your feelings and wonder why you’re grieving if nobody has died. Explaining your feelings to others is hard because you can hardly track them yourself.
Suspense and fear are part of your life. Because you fear others won’t understand, you keep your feelings to yourself. Grief experts call this “stuffing feelings” and you may feel stuffed with worry, insecurity, and sadness. Uncertainty seems to rule your life.
Anticipatory grief can become complex. Grief expert Therese A. Rando, PhD, author of the article, “Anticipatory Grief: The Term is a Misnomer but the Phenomenon Exists,” says anticipatory grief imposes limits on your life. That’s bad enough, but as time passes, your anticipatory grief keeps expanding. “I’m tired of waiting for my mother to die,” a friend of mine admitted. I understood her feelings.
There is a shock factor. Edward Myers, in his book When Parents Die: A Guide for Adults, says anticipatory grief doesn’t have the shock of sudden death, yet it exacts a terrible toll. As he writes, “If sudden death hits like an explosion, knocking you flat, then a slow decline arrives like a glacier, massive, unstoppable, grinding you down.”
Lack of an endpoint. Although you may think you know when your loved one’s life will come to a close, you aren’t really sure. Waiting for the end can put your life on hold, sap your strength, and prolong anticipatory grief.
You feel sorrow and hope at the same time. Hope may be the most unique aspect of anticipatory grief. While you’re grieving you hope a new drug will be invented, new surgery will be developed, or your loved one will experience a miraculous turn-around. Hope can keep you going.
Understanding anticipatory grief can keep you going too. Joining The Caregiver Space Facebook groups can be a source of support and hope. Remember, you are not alone. You are in the company of thousands of other caregivers, and we can help each other.