Menstuff® has compiled the following information on care
giving from a man's perspective.
All In The Family: Men As
Caregivers
Are You Ready to Be a
Caregiver?
Knowing When to Jump in and
Help
Fraud and the Elderly
Guardianship &
Caregiving
Resources
All In The Family: Men As Caregivers
Marty Beilin plays many roles in his day-to-day life -- from breadwinner to husband to father of two daughters. But for the past five years, he has also found himself thrust into a new and unanticipated role -- as primary caregiver for his wife, Debbie, who has multiple sclerosis.
"It changed everything," says Marty, who teaches school in the Philadelphia area. "There's shock, denial, anger, guilt, and then finally acceptance."
Marty has assumed a long list of responsibilities in caring for his wife who must use a wheelchair or a motorized scooter when she leaves the house. "Debbie has chronic, progressive MS, but luckily she has not been so impaired that I've had to stop working," says Beilin. "At this point, we try to live as normally as we can. The key is to find a way to be a caregiver, but also to go beyond just coping skills and to have a life."
According to the National Family Caregivers Association (NFCA), there are more than 54 million Americans like Beilin who have provided care for an elderly, disabled, or chronically ill family member or friend during the past year. Even though caregiving is often thought of as a role assumed primarily by women, an NFCA survey found that 44% of caregivers are men.
Beilin is president of the 14-year-old Well Spouse Foundation, which provides information and support for spousal caregivers. "There hasn't been enough attention to the needs of family caregivers," says Beilin. "People see the person in a wheelchair, but they don't really focus on the person pushing the wheelchair."
Rising to the Challenge
Whether an ill relative has been diagnosed with Alzheimer's disease, Parkinson's disease, multiple sclerosis, Lou Gehrig's disease, or a stroke, male caregivers often find their new role to be daunting and all-consuming. Most men have grown up in a household -- and certainly a culture -- in which females have been perceived as the primary family nurturers. Yet often by necessity, more men than ever are rolling up their sleeves and helping an ill loved one with day-to-day tasks such as dressing, toileting, bathing, eating, changing dressings, and managing medications.
Kathleen O'Brien, vice president of program services for the Alzheimer's Association, says that many men may not have the same comfort or confidence level as women in handling the tasks of caregiving. "Some have a particularly difficult time with the more intimate care, such as a son bathing and dressing his mother," she says.
To compound the stress in their lives, baby-boomer men may find themselves sandwiched between elder care and child care, and as they juggle work, family, and the needs of an aging parent, their stress and frustration can often turn into anger, despair, exhaustion, and burnout.
Finding Help
In confronting the responsibilities before them, men are more likely than women to delegate some of the caregiving responsibilities to others -- either to other family members, or to outside help who they've hired to handle many of the home-care duties.
"Some men feel that they don't have to do it all on their own, and they're better than women at saying, 'I need some help with this -- you do this part, and I'll do that part,'" says Carole Cohen, MD, associate professor of psychiatry at the University of Toronto. "In the work world, they may have become accustomed to this kind of delegating, whereas women of the same generation may be less likely to feel that it's OK to get help."
Gerontologist John Khajit, a family consultant with the Family Caregiver Alliance, agrees. "Men tend to approach caregiving a little differently than women, and are more likely to try to problem-solve the situation," he says. "They seem quicker to hire a home-care worker, to call social workers, and to contact local agencies. I've talked with men who want to move things forward, want to take the next step, and who ask what they need to do to handle the immediate problems in front of them."
Financial pressures can become part of the caregiving equation as well. A study by researchers at San Francisco VA Medical Center found that caregivers of frail elderly relatives frequently miss work or quit their jobs altogether because of their responsibilities at home.
"Caregiving can be a huge financial strain upon families," says Mary Mittelman, DrPH, author of Counseling the Alzheimer's Caregiver. "But the emotional strain tends to be even greater."
The Benefits of Caregiving
Although the stress and hardships of caregiving are undeniable, the experience isn't necessarily without positives. A study by Cohen, published in the February 2002 International Journal of Geriatric Psychiatry, evaluated close to 300 people (more than 30% of whom were men) who were caring for seniors. More than 70% of these caregivers said they were happy in the caregiving role, or had positive feelings about at least one aspect of it. Most commonly, they described enjoying the companionship, and the satisfaction of meeting an obligation and providing a better quality of life for the individual receiving care.
"Caregiving is a challenge and a difficult job for both men and women," says Cohen. "But the people who report finding positive aspects find it a little less challenging."
Leslie Gerber was the primary caregiver for his mother from the time of her diagnosis with Alzheimer's disease in 1995 until her death in January 2002 at age 85. "I was very close to my mother," says Gerber, who lives in New York City. "It was the right thing to do."
Nevertheless, Gerber admits to feeling plenty of frustration in the beginning, "but then I learned to just go with it." He handled many of his mother's immediate needs, managed her checkbook, and arranged for her doctors' appointments and trips to the beauty parlor until he finally hired live-in help to share some of the burdens. He also joined a support group sponsored by the Alzheimer's Association, which he found "very helpful in that it allowed me to meet others going through the same experiences."
Beilin says that becoming active in the Well Spouse Foundation, and participating in one of its 50 active support groups, has helped him avoid burnout. "No matter how kind and considerate your friends and co-workers are, they can't fully understand what's happening to you and your family," he says. "I needed people to connect with who really understood the kind of emotional stress and pressure I was under."
Getting Men Involved
Some studies have documented the ability of support groups to ease the emotional pain and anxiety and fight the social isolation associated with caregiving. But even though these support groups for caregivers are available in most parts of the country, men lag behind women in their willingness to take the initiative to participate.
In an attempt to attract more men, the Alzheimer's Association sponsors support groups solely for male caregivers, which are becoming increasingly popular. O'Brien says that although the association offers services in more than 300 communities in the U.S., some men prefer participating more anonymously in online support groups through the organization's web site.
Men also tend to react differently to the depression that can accompany long-term caregiving. They are less likely than women to admit that they feel depressed, and to talk with their doctor about it or to take antidepressant medication. Men, in fact, are more likely to deal with their depression by working long hours at the office or by abusing alcohol.
By contrast, women are often more receptive to counseling to manage their depression, says Khajit. "They cope with their emotions in a different way."
Overlooking Self-Care
Male caregivers may neglect themselves in other areas -- eating an inadequate diet, ignoring their need for exercise, getting too little sleep, and postponing visits to the doctor for their own medical ills. But the consequences of these behaviors can be serious.
Recent research at Ohio State University found that the chronic stress associated with caring for a family member with dementia can weaken the disease-fighting immune system of elderly caregivers. At the University of Pittsburgh, investigators evaluated elderly individuals (48% of whom were men) who were caring for an ill spouse; the strain of caregiving increased their risk of death, compared to counterparts who were not caregivers. As a result, many doctors and social workers tell caregivers that they can't care for someone else unless they're also caring for themselves.
"Caregivers often make themselves the last priority," says Khajit. "Some of them haven't had a day off in literally years. We talk to them about ways to arrange for a little time away so they can recharge their batteries and nourish themselves."
Mittelman, research associate professor of psychiatry at New York
University School of Medicine, notes that if the caregiver isn't
healthy, then the patient is going to suffer. "Counselors often say,
'Take care of yourself because you're the only person who can take
care of the patient,'" adds Mittelman.
Source: my.webmd.com/living_better_content/him/article/1685.53535?page=1
Are You Ready to Be a Caregiver?
Realizing that each caregiving situation is unique, we want to
help you think through your own situation by asking a series of
questions related to typical caregiving issues. Discussing your
responses with others who may be available to support you is a good
idea -- and one that may help you find the extra help you need. Don't
think you must meet this responsibility solely on your own. Being a
caregiver requires more than an "army of one." It's a family
affair.
Select the number (on a scale of 1 - 3) that best describes your situation for each item or issue. You can total your scores if you wish to get a big picture of the situation. Lower scores indicate less manageable situations -- situations requiring additional support beyond the primary caregiver -- and higher scores indicate situations that may be more readily managed.
The care receiver is usually:
_____ (1) Confined to the bed
_____ (2) Homebound, but not bed bound
_____ (3) Able to get about on his / her own
The care receiver is:
_____ (1) Not able to feed himself / herself
_____ (2) Able to feed himself / herself but needs supervision,
coaching, and company
_____ (3) Able to come to the table for meals
The care receiver is:
_____ (1) Not able to bathe himself / herself or provide other
routine care (ex: shaving, dressing)
_____ (2) Able to take a tub bath or a shower but must have
assistance and support to do so
_____ (3) Independent in bathing, grooming, and dressing
The care receiver is:
_____ (1) Not able to control his / her bowels or bladder
_____ (2) Able to control bowels and bladder but must have assistance
using a bedpan or getting to the bathroom.
_____ (3) Independent in getting to the bathroom
The care receiver:
_____ (1) Requires 20 hours personal care a week
_____ (2) Requires between 10 and 20 hours personal care a week
_____ (3) Requires less than 10 hours personal care a week
The care receiver is:
_____ (1) Usually mentally confused
_____ (2) Sometimes mentally confused
_____ (3) Able to think clearly and make competent decisions
Some things to consider from the perspective of the primary caregiver
The caregiver is:
_____ (1) In frail or poor health
_____ (2) Has some limitations in activities
_____ (3) In good health and is physically active
The caregiver is:
_____ (1) Employed full-time outside the home
_____ (2) Employed part-time outside the home or has a flexible and
supportive work setting
_____ (3) Not employed outside the home
The caregiver is:
_____ (1) Responsible for children or other family members
_____ (2) Responsible for no one other than the care recipient
_____ (3) Able to hire full-time assistance
The caregiver:
_____ (1) Lacks skills or confidence in providing care
_____ (2) Has adequate skills and confidence to meet home care
needs
_____ (3) Can hire any needed assistance
The caregiver:
_____ (1) Has less than four hours "off duty" time each week
_____ (2) Has at least one day "off duty" each week
_____ (3) Can pursue personal interests and activities
The caregiver:
_____ (1) Will lose sleep regularly in order to complete all of
the daily care needs
_____ (2) Will suffer occasional sleep deficit in order to complete
all the daily care needs
_____ (3) Will be able to get regular, solid intervals of sleep and
not build a sleep deficit
Scoring
Lower scores indicate less manageable situations -- situations
requiring additional support beyond the primary caregiver -- and
higher scores indicate situations that may be more readily
managed.
Lowest possible rating score for this section: 12**
** indicates a need for significant caregiver support
Highest possible rating score for this section: 36
Your total rating score for this section: ______
Select the number (on a scale of 1-3) that best describes your situation for each item or issue. You can total your scores if you wish to get a big picture of the situation. Lower scores indicate less manageable situations -- situations requiring additional support beyond the primary caregiver -- and higher scores indicate situations that may be more readily managed.
For the care recipient and caregiver:
_____ (1) There are no community support services available
_____ (2) There are some community support services available such as
transportation, meals
_____ (3) There is support ready and available to help with long-term
care
For the care recipient and caregiver:
_____ (1) There are no informal support groups available
_____ (2) There are inadequate informal support groups
_____ (3) There are networks of informal support available through
neighbors, family and friends, or religious groups
The primary caregiver:
_____ (1) Does not "believe in" accepting help of any kind from
anyone
_____ (2) Does not "believe in" accepting help from anyone outside
the family
_____ (3) Is open to accepting help from others
The primary caregiver:
_____ (1) Is essentially cut off from participating in social or
recreational activities
_____ (2) Is significantly restricted in participating in social or
recreational activities
_____ (3) Is able to continue to participate in at least one
important social or recreational activity
The primary caregiver:
_____ (1) Will be isolated from previous activities /
relationships with significant others
_____ (2) Relationships outside the home will be significantly
restricted
_____ (3) Relationships with significant others can continue on a
regular, if somewhat reduced, basis
The primary caregiver:
_____ (1) Will be essentially cut off from participation in valued
religious activities
_____ (2) Will be significantly restricted from participation in
valued religious activities
_____ (3) Will be able to maintain participation in valued religious
activities
Scoring
Lower scores indicate less manageable situations -- situations
requiring additional support beyond the primary caregiver -- and
higher scores indicate situations that may be more readily
managed.
Lowest possible rating score for this section: 6 **
** indicates a need for significant caregiver support
Highest possible rating score for this section: 18
Your total rating score for this section:
The care receiver:
_____ (1) Has few if any financial assets
_____ (2) Doesn't qualify for government assistance programs
_____ (3) Is financially able to pay for needed support and care
The caregiver:
_____ (1) Has no financial assets to give to the patient's
care
_____ (2) Has minimal financial assets that will soon be depleted
_____ (3) Is able to assume financial support of patient
For either caregiver or care recipient:
_____ (1) The financial situation is expected to worsen in the
future
_____ (2) The financial situation is expected to remain stable in the
future
_____ (3) The financial situation is expected to improve in the
future
How permanent is it?
_____ (1) The decision to provide in-home caregiving cannot be
reversed
_____ (2) The decision to provide in-home caregiving cannot be
readily reversed
_____ (3) The decision to provide in-home caregiving can be readily
reversed
How long?
_____ (1) In-home caregiving is expected to be a long-term
situation
_____ (2) The duration of in-home caregiving is very much
uncertain
_____ (3) In-home caregiving is expected to be a short-term
situation
Legal Factors
_____ (1) There are complicating legal factors to consider
_____ (2) There are a few minor legal considerations
_____ (3) There are no legal complications to consider
Relocation
_____ (1) Required relocation is unwanted on the part of both
caregiver and care recipient
_____ (2) Required relocation is unwanted on the part of one
party
_____ (3) Relocation is not required, or if it is, it isn't a
problem
Size of Home
_____ (1) Caregiver's home is inadequately sized and equipped to
provide the needed care, and renovation is not possible or
affordable
_____ (2) Caregiver's home is inadequately sized and equipped, but
renovation is possible
_____ (3) Caregiver's home is adequately sized and equipped to
provide the needed care
Household Privacy
_____ (1) Privacy for each household member is not possible
_____ (2) Privacy can be arranged for each household member with
minimal effort
_____ (3) There is adequate time and space for each household member
to have some privacy
Caregiver Responsibilities -
Sharing the Load
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Changing bed linen |
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Giving a bath |
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Turning & repositioning |
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Getting to the shower/tub |
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Meeting bathroom needs |
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Dressing & grooming |
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Feeding breakfast |
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Feeding lunch |
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Feeding dinner |
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Preparing meals & snacks |
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Providing wound care/exercise/therapy/other care |
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Giving medications |
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Doing laundry |
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Shopping for food & essentials |
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Getting patient to the doctor |
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Finding information about legal and/or financial issues |
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Writing checks/managing finances |
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Finding information about community resources and support services |
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Caring for house |
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Caring for yard |
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Caring for automobile |
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Caring for other family members |
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Time out for religious or social occasions |
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Other situation-specific needs/commitments |
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Knowing When to Jump in and Help
It's the worry shared by a generation, an entire middle-age demographic layer watching nervously as its aging parents' ability to live independently declines. If those older adults neglect to make decisions and plans for their own futures, it's the grown offspring who must take on the responsibility.
Trying to assess an older relative's ability to function is painful and difficult. "It's hard for all of us to accept that our parents are no longer in charge," acknowledges Ann Von Essen, a consultant on aging issues in Woodside, Calif. "The adult child is often in denial. They just know they don't want to be the caretaker."
"There are no 'six easy steps' to feel great about taking care of your aging parents," cautions Harriet Lerner, an author and psychologist at the Menninger Clinic in Topeka, Kan., whose most recent book, The Mother Dance: How Children Change Your Life, describes coming to terms with her aging parents' increasing needs. "It's a profoundly difficult emotional issue."
Even professionals in the aging field have trouble facing their own parents' situation, agrees Dorothy Howe, a senior program specialist with the American Association of Retired Persons. "We find that in our offices, when it's your own situation, you don't always deal with it any better than anyone else."
Adult children need to initiate communication, begin exploring options, and do their best to "proceed with calm and clarity," as Lerner puts it. This is the time to tune into aspects of aging parents' lives that we normally regard as their own business. That's not easy for anyone, and it's harder when the parent lives far from the child.
Sometimes only a crisis makes the situation clear. "I've seen cases, especially when the children are far away, where the older person gets sick and is hospitalized. That's when it suddenly becomes clear that they can't live alone," says Cathy Alessi, MD, a staff geriatrician at the Sepulveda Veterans Administration Geriatric Research, Education and Clinical Center in Los Angeles.
Specialists in the gerontology field gauge abilities with a list of "activities of daily living," or ADLs. In the six basic ADLs, loss of function is unmistakable: continence, feeding, getting in and out of bed, getting to the bathroom, bathing, and dressing.
It's the eight ADLs known in the field as "intermediate" or "instrumental" that may need to be monitored more closely: using the telephone, shopping, preparing food, keeping house, doing laundry, using transportation (whether driving or other transit), taking medications and managing finances. These are vital abilities for maintaining independence, but it's not necessarily time for the nursing home when aging parents begin to lose them.
"A lot of older people with impairments in these areas can remain relatively independent in the community if they can get the right kind of help," Alessi points out.
The adult child needs to find a middle ground between patronizing, prying, and full retreat from the older adult's situation. Such an inoffensive act as opening the refrigerator can provide clues to how someone is functioning. Specialists suggest areas to keep an eye on and some ways to spot problems.
Poor nutrition poses a common hazard to the elderly, especially those who live alone. "If the refrigerator doesn't have food in it, that's a bad sign," says Von Essen. "Older people who are in trouble also forget to finish their meals." It's not always poverty -- the apocryphal image of an old person living on cat food -- that causes nutritional problems. One older woman with a Mercedes in her garage was hospitalized after living for weeks entirely on Pepperidge Farm cookies and tea. "That's really not rare, even among the wealthy," she says.
In the case of a patient of Alessi's, eating habits were the signal that she was no longer competent to live by herself. "This woman had mild dementia. She was buying all her meals from a small convenience store nearby, and losing weight." At that point, her family realized it was time to make a change, and she moved in with a son.
For adult children living near their parents, it's not hard to keep an eye on the condition of the house and personal grooming habits. It's also wise to be aware of bruises and other signs of trauma, possible clues that the parent has fallen. A common problem in the elderly, falls are both cause and symptom of an inability to function independently. They can signal general weakness, balance problems, or other medical troubles, as well as possible overmedication.
Not that every older person will cheerfully tell the family about an embarrassing or frightening fall. Indications that a person is at risk for falls include difficulty walking and inability to get up from a chair without pushing off.
It's not unusual for older people to try to hide problems, points out Von Essen, who does regular assessments of the residents of a San Francisco Bay Area retirement community. "If they aren't telling you things, if they withdraw and insist they're doing fine, that's an alarm signal," she says. "Though they may also withdraw and not want to see people because of hearing problems. It's difficult to socialize when you can't hear the conversation." Becoming reclusive and showing signs of paranoia can also be signals of depression, a common and devastating -- but often treatable -- affliction among the elderly.
Sometimes it's money issues that bring out paranoia symptoms. "Some people accuse family members and other people around them of stealing," Von Essen says. "That could be a way of covering up for areas of uncertainty, covering up that they can't balance their checkbook.
"Then you see the opposite situation -- people giving money away," she adds. The predator taking advantage of a confused older person is most often a caretaker, a political cause or a purported church official. ("What seems to happen is a church member getting the money for themselves," Von Essen notes.) Occasionally an older person gives money to every junk-mail solicitation that lands in the mailbox. Others fall for scams and get on "sucker lists," which put them in the sights of other swindlers. Phony sweepstakes are a common ploy. Any talk about sweepstakes or prizes should raise an immediate alarm.
Visiting adult children can keep an eye out for overdue bills lying around or fishy-looking mail being saved, both signs that the senior needs help. "Once the problem is in the open and there's cooperation between the adult child and the older parent, you can just keep a small amount of money in their checking account," Von Essen suggests.
Unusual behavior can also signal loss of memory. The AARP'S Howe sums up the kind of forgetfulness that signifies serious decline: "Forgetting where you put your car keys is not a problem. Forgetting what the car keys are for is a problem."
But less drastic memory loss can still be serious, as in the classic hazard: forgetting to turn the stove off. One woman in her 60s who spent years dealing with elderly parents suggests casually checking the kitchen cabinets for blackened pots.
Medical illness can mimic symptoms of decline, as can overmedication. Von Essen recalls assessing one woman whose withdrawn behavior turned out to be a sign that she was taking overdoses of a sleeping pill. "When I rang the doorbell, she peeked around the door in a very tentative way, almost hiding, and I found that she couldn't walk without holding onto the wall. I asked if I could look at her medications."
A prescribed sleeping pill piqued Von Essen's interest. The woman was apparently taking an extra pill when she woke during the night. Von Essen has since worked with the woman's physician to make sure she takes medications as prescribed.
In one cautionary horror story, a California man appeared to be in terminal decline three years ago, until his grown daughter asked his doctors what all his pills were for. Eugene Daly was dazed, immobile, in diapers, and not eating when his daughter, Adair Lara, insisted that his medications be stopped. A week later, an enraged Daly got out of his wheelchair and stalked out the door in an attempt to escape from a nursing home he describes tartly as "far worse than jail." Now 77, he's back in the Marin County, Calif., apartment that Lara and her siblings had begun clearing out.
Lara, a writer at the San Francisco Chronicle who described the episode in her newspaper column, says her father had "started to slow down like a train" after his doctor prescribed a tranquilizer. Unaware of the drug, Lara took him to the San Francisco Veterans Administration hospital, where he was put on a powerful antidepressant. He fell rapidly into decline, and Lara blames the VA.
"They said he was senile," Lara says. "When I asked how it could happen so suddenly, they showed me a brain scan." It was after he was transferred to a nursing home that Lara questioned her father's prescriptions. When the drugs wore off, Lara says, "He awoke in a fury." Against medical advice, Daly's children moved him back to his apartment. "He's living fine on his own," Lara says, "even though he has a form of senility and he's confused sometimes. " A VA spokesman said he couldn't comment on an individual patient's case.
Whether the error is the patient's or the healthcare provider's, overmedication is frequently mentioned as a hazard of aging. Some experts suggest routine "brown-bag" consultations: Put all medications in a bag and take them to the doctor for evaluation.
When the parent insists everything is OK in the face of all evidence, that's a red flag, Von Essen warns. "If they're falling and forgetting where their car is and making accusations about their money and taking two sleeping pills instead of one and they deny that there's a problem, that's an inappropriate response and it's time to take action," she says.
But whatever is done next needs to be done with respect for the parent as a decision maker and as a human being, Alessi cautions. "In general, I find older people are extremely wise," she says. "They're the survivors. They've thought about death and what to do.
"Your parent is still an independent person," she emphasizes.
"Even a person with early or moderate dementia still has needs and
wants and opinions, and they need to be respected."
Source: Caroline Grannan, my.webmd.com/content/article/4041.129
If you are concerned that a loved one may have become the victim of fraud or financial exploitation, consider the following questions:
Telemarketing And Mail Fraud
We all receive "junk mail" or phone calls from telemarketers, but because the ill and elderly are often isolated or lonely, they are more likely to respond to phony offers and become the victims of fraud. Fraudulent telemarketers often:
To help protect a loved one from fraud, try as many of these preventative steps as possible:
Source: FamilyCare America, Inc. All Rights
Reserved. For more caregiving information, please visit
www.FamilyCareAmerica.com
Individuals who fit the legal definition of mental incapacity may suffer from:
By themselves, these conditions are not sufficient to classify a person as mentally incapacitated. Instead this judgment is made with regard to the person's ability to make an informed decision, and takes into consideration any harm or risk that the person may experience due to an inability to provide for or manage his or her personal affairs.
Guardianship is only recommended when other alternatives have proven to be ineffective. Before considering guardianship, families should look into less restrictive ways to help with decisions, including conservatorships and power of attorney contracts.
To informally assess a loved one's decisional capacity, consider the following kinds of questions:
If your loved one understands the above, can he or she identify the appropriate person(s) to inform about the decision?
For a formal analysis of your loved one's mental capacity, review the official definition of mental incapacity given by the Guardianship and Administration Act of 1993:
The inability of a person to look after his or her own health, safety, or welfare or to manage his or her own affairs, as a result of (a) any damage to, or illness, disorder, imperfect or delayed development, impairment or deterioration, of the brain or mind; or (b) any physical illness or condition that renders the person unable to communicate his or her intentions or wishes in any manner whatsoever.
Because many states base their definition of mental incapacity on this law, it works as an informal definition, but you should check with an attorney for the specific rules governing guardianship in you loved one's state.
Specific responsibilities for a guardian typically include:
Source: FamilyCare America, Inc. All Rights
Reserved. For more caregiving information, please visit
www.FamilyCareAmerica.com
Hope is one of those things in life you cannot do without. - LeRoy Douglas
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