This material has been developed by and is presented by The Sandwich Generation ®
THE 4 As OF ROLE REVERSAL
by Carol Abaya, M.A.
Note: Each person ages differently and each scenario is different. But there is a commonality about the "process of aging" in relation to adult children, Sandwich Generationers We have turned to four experts for their comments
Watching parents become frail and lose capabilities is a very emotional experience and often can be traumatic
While each scenario is different and no one can ever be fully prepared, there is a 4-step process which can help Sandwich Generationers deal more successfully with the situation and their feelings.
The ultimate goal of using this procedure is to deepen the understanding of the parental aging progression and the Sandwich Generationers own feelings.
The four steps are
Going through these steps may be strictly a linear route -- moving on from one step to the other, or waffing -- moving back and forth, particularly between the last two steps. A person, for example, might have to go back to the acceptance stage during the action stage.
Morris in the Introduction to her book makes some important points, one which she admits surprised her as she wrote. "The first is the need, both the depth of the need of individuals looking for answers and support, and the sheer volume of the need. More than ten million elderly people require assistance getting through the day, and 90% of the help they receive -- with shopping, bathing, eating, medical care and getting around -- comes from family members.
"No matter what story is told, no matter how troubling the details, caring for an aged parent is always about giving. It is about compassion, about family ties that we cannot turn our backs on, about a drive so basic, so powerful, that we cannot ignore it. It is about closure and saying good-bye. Faced with the reality that life does, indeed, end, that this parent will one day be gone, our most human, most tender, most protective instincts rise to the surface. This response, this need to care, while brought on by heartbreaking circumstances, feels good. It reminds us of whats really important in life and forces us to look beyond the routines of our daily lives. It comes from the heart, and so it can feed the heart."
So, all Sandwich Generationers can take heart as they move through the process themselves and take over tasks and chores for their parents. Parental caregiving is not always about negatives, especially in relation to feelings. It gives everyone a chance to forge new and loving bonds and erase from the slate old hurts.
Awareness: of the changes in a parent(s) capabilities and your feelings about these changes.
Kratz: Parents and children often cling to stereotypes (past picture of parent) which interfere with or even block their ability to deal with current issues. Everyone needs to address this as they address their parents changing physical and mental capabilities.
The negative feelings often are the first to be felt: anger, anxiety, impatience, fear for self. We might feel guilty over the sense of duty we see ahead of us, inadequacy, helplessness and resentment. We may also feel threatened by the loss of a parent.
But there are also positive feelings. Of affection, of protectiveness, and of a sense of pride in what the parent is doing, in spite of infirmities or illness.
Tremoulet: Often we deny that a parent is getting needy. If we live nearby, the changes are often so gradual that we dont see them. Someone who visits periodically often sees more. Very important is the fact that couples, where one is becoming more frail or is ill, shield each other from their children. And then the children dont realize what has been happening until the caregiver spouse becomes ill or passes away.
We also become fearful for our own selves. Is it going to be the same for us as it is for our parent(s)?
What we need to do is reach back to the past when our parents were our good friends and supporters and let those memories offer comfort to us as we take over their care.
Turek: We all have a sense of frustration when we see a parent "lose it" and we cant prevent it. We often are angry, and always sad, and in a sense already anticipating grieving. And seeing one parent not able to help the other because both are ill is difficult.
Acknowledge that the changes are a natural process of aging and that everyone needs to verbalize their feelings.
Kratz: Facts can be hard to face, particularly if they run contrary to what each would prefer to believe about the other. Whether a person likes the facts or not, the deepening of understanding has to be given with the recognition of what actually exists.
Often the first feelings that come to the forefront in this stage are those of doubt -- doubt of the ability to deal with impending burdens.
It is in this stage that one must also acknowledge that there may be some unresolved issues from the past, both in relation to the parent(s) and siblings, who should be involved in the care and decision making process.
Tremoulet: Adult children may need help in acknowledging exactly what is happening to a parent. Seeking help from a doctor, who can explain the physical realities, is important. Talking with friends and other family members can more clearly identify needs. Whether one lives nearby and hasnt seen the gradual changes or lives far away, it will take three or four visits to see the full picture of need. Parents are marvelous at hiding their weaknesses and may be on their "good behavior" the first visit.
Turek: Acknowledging ones feelings is very important. Sandwich Generationers can spot their own emotional situation if they become more irritable, have tiffs at work or with family members; if they are tense. Or if they are backing away from responsibilities or their social life. Everyone needs to acknowledge where the source of stress is coming from.
Morris: Delaying, postponing or looking the other way is a natural, but risky, approach. Staying one day ahead, one question ahead, will give you and your parent time to evaluate options carefully.
Accept that you cannot eliminate the aging process; your own feelings; and the fact you cant do everything yourself.
Kratz: In accepting what is occurring one must have better communication with the parent. We need to focus on the needs of each stage of aging and then be able to take appropriate action.
Tremoulet: Acceptance is crucial because if we hide our head in the sand, we wont do anything. We need to accept before we can start planning. And if we dont accept today, an outside force, such as the state through Adult Protective Services, may move in and then the family may loose control.
Siblings may be seeing things differently. Others may still be denying parents changes and needs.
Sometimes parents cover up what is happening, and other times they accept the changes more readily than their children.
When one parent is caring for the other, that parent needs relief from caregiving. If children try to maintain the previous status quo, they are putting a tremendous burden and feelings of guilt upon the caregiver parent.
Turek: We have to learn to deal with the situation. We may not like it (whats happening), but we need to learn different ways of coping. Talking it out with a minister or rabbi, a friend, or counselor often helps. A good way of looking at and accepting ones feelings is to keep a diary, a log of events and how one feels about them.
Remember, as awkward as it may be, talking about the worst case scenarios wont make them come true, but refusing to talk about them wont make them go away. Ignoring the inevitable will only leave you unprepared for a crisis.
Action: research, identify and evaluate care options and make decisions that will provide appropriate care for the parent as well as protect your own "I" Self.
Kratz: Work with realistic expectations of who can and will do what and talk about this. Be clear as to what your parent can and will do for his/ herself and what each sibling will do. Have a family conference that includes the parent. Set up a realistic pattern of help also using support groups and community services. But dont take on more than really needs to be done at any given time.
If action cannot change circumstances, then you need to change your own expectations to be realistic and to help parents adjust their expectations.
Talk with doctors to determine whether there is a reason for confusion, for example. Tests might pinpoint something than can be treated and the confusion condition reversed.
Tremoulet: Most important is to remember that together with whatever action is taken that we need to have empathy to support and to help maintain the dignity of the elder.
Identify people and programs for support and services. Look outside the family to community and church groups. Talk to business colleagues, family members and friends who have dealt with similar situations. Get names of organizations and referrals.
Turek: Sandwich Generationers cannot be afraid of doing and changing. Do what is reasonable. Women tend to overdo things and take over. You need to decide what you can do comfortably and get help for the things you cant do yourself. Tell siblings what you are doing and ask for help.
Sometimes you have to say no. The first time its hard to get rid of the feelings of guilt. But you have to also take care of yourself and your health. As time goes on and you may have to say no again, you will realize you have made the right decision for yourself. Then you feel better.
The above purposely deals only with the emotional aspects of the four step process. Because once you have dealt with the first three steps and understand the emotions coming from step 3, then you will be able to organize and proceed in dealing successfully with needs.
THE RULE OF A-B-C ORDER
Among my earliest memories are the times our Mom impressed my two sisters and me by converting to "A-B-C Order" whatever message she wanted us to remember. As we were trusted to cross the street alone, we chanted A-B-C: Always Be Careful. Our manners were guided by A-B-C: Act like Beautiful Children. Applying the alphabetical order tactic, we went on to devise our own magic codes and silly games to serve whatever need we found.
Now the Rule of A-B-C Order comes into play as we consider the matter of aging and change. Think of change as a form of conflict and follow the rules that apply to conflict resolution.
ADDRESS THE SITUATIONAre you dealing with reality? Sometimes its hard to let go of the dream BEWARE OF EMOTIONAL INTERFERENCE It's not about being right or wrong Its not about being happy or sad Its about how you feel, what you want or dont want. CONSIDER YOUR OPTIONS You cant change the past.<o:p</o:p You cant unsay whats been said or undo whats been done You can only choose to move forward in dealing with change Know your limits. Set your boundaries. Take control
Change is the name of the game. Play it honestly and well
A reader from Suburban, Seattle.
THE SEVEN SECRETS OF SUCCESSFUL CAREGIVING
Note: There is nothing magical about parent caregiving. There is no wand that one can wave to make it really easy. Here Helen Susik, who is a gerontologist, a faculty member at the Suncoast Gerontology Center, University of South Floridas College of Medicine, and an author, shares her thoughts with The Sandwich Generation on some of the basic elements and "to dos."
Feeding, grooming and toileting an ill or incapacitated adult, often for years on end, is one of lifes most challenging and difficult tasks. It is well known that caregivers are at a special risk for exhaustion, stress and burnout. What I call "seven secrets" can help caregivers take better care of themselves and their loved ones:
SECRET #1: GIVE YOURSELF A BREAK
Even the most dedicated workers need an occasional vacation, and this is especially true of caregivers. Caregivers require a one-hour break from caregiving tasks each day. They also require a minimum of 4 hours of uninterrupted time to do as they wish each week. "Respite" may be obtained by having family members, neighbors or friends fill in for a short time, or through in-home sitter services provided by community agencies. Respite is also available on a day-long basis at adult day care centers. Overnight/holiday respite is offered by some nursing homes, hospitals or retirement centers.
SECRET #2: TAKE A CRASH COURSE IN THE DISEASE
When it comes to caregiving, knowledge is power. Learning all there is to know helps with long-term coping. Caregivers should discuss with a health-care professional the stages of a particular disease, the symptoms and behaviors associated with each stage, treatment options available, and projections of life expectancy. It is also helpful to contact a health-related agency, such as the Alzheimers Association, American Cancer Society or American Heart Association, for printed information, as well as referrals to support groups and community agencies.
SECRET #3: SEEK FAMILY ASSISTANCE
Because of the overwhelming physical and emotional burdens associated with long-term illness, it is essential that caregivers request assistance with caregiving tasks. A family conference should be held to discuss each family members contribution to care, be it hands-on assistance, errands, financial support, or investigating and implementing services. Because discussions of "who is going to do what" can often lead to family conflicts, (or, re-activate long-simmering ones) it is often helpful to have an objective third party present to mediate the discussion. A member of the clergy, a social worker or other professional can help maintain harmony while solutions are found.
SECRET #4: DEVELOP A "PHYSICIAN PARTNERSHIP"
Even in cases of long-term debilitating illness, for which no cure is available, both the caregiver and patient should consult with a physician at least every six months. The patients general health may be monitored, and routine health conditions treated. The physician should be the source of "care to the caregiver," being on the alert for stress-related illnesses, and advising on how to best manage difficult patient care problems. The physician can also help caregivers with the worlds most difficult decision: knowing when the time has come to place a loved one in a nursing home.
Because of the devastating emotional toll exacted by caregiving, it may also be helpful for caregivers to seek out other kinds of professional advice. For instance, discussing issues such as guilt, anger or despair with a trusted psychologist, mental health counselor or spiritual leader can offer much in the way of hope and healing.
SECRET #5: IMPLEMENT FINANCIAL AND LEGAL PLANNING
Long-term caregiving can be financially as well as emotionally devastating. Upon receiving a diagnosis, measures should be immediately undertaken to preserve assets, honor end-of-life wishes, and to institute legal safeguards. Three legal documents are essential: a durable power of attorney, a living will, and a health care surrogate document. (A power of attorney grants the power to someone else to take care of the patients finances and property; a "living will" documents wishes about life-prolonging medical procedures; and a health surrogate document designates someone to make health care decisions for an incapacitated person.)
SECRET #6: JOIN A SUPPORT GROUP
Support groups are a good example of "people helping people." These self-help meetings are amazingly beneficial and are usually free. Support groups are sponsored by hospitals, nursing homes, social service agencies, associations and other organizations. Some groups address specific problems such as Alzheimers, Parkinsons or stroke; others are open to caregivers who provide care to any chronically ill or incapacitated person. These groups allow attendees to provide moral support to one another, as well as to share ideas about patient care and information about the best and most affordable services. Some groups feature lectures by professionals, films and videos, and printed handout materials. Others focus more on emotional support and the sharing of experiences and feelings.
SECRET #7: ACCESS COMMUNITY RESOURCES
Our world is literally exploding with products and services designed to assist families care for their loved ones. Many of these services are free - such as those provided to persons aged 60+ through the federal Older Americans Acts. Some of the most popular OAA services include nutritious home-delivered meals, transportation, adult day care or in-home services, including homemaker and personal care services, and free legal advice. These services are coordinated by "Area Agencies on Aging" in every community across America.
Remember, a burned-out caregiver cannot provide quality care. The "Seven Secrets of Caregiving" can provide the key to coping longer and coping better -- and, in many cases, can help families keep ill or incapacitated loved ones at home and out of a nursing home.
STOP .... HELP ....
Caregivers are often pressed for time in which to do all their chores and often rush to get everything done.
And just as often, the caregiver -- rather than the care recipient -- decides on the schedule.
The result can be chaos. The recipient resists, becomes agitated and resentful, and acts out either verbally or physically, or both.
The caregiver also reacts negatively. Her feelings overflow to the elder. And no one is happy!
Maxcine Maxfield is a clinical nurse specialist with a BSN and Ph.D. in gerontology and adult education at a rural hospital in Virginia. She uses two acronyms to help caregivers -- whether family or professional -- step back and take a look at what should be happening. The results can easily turn around a very troublesome and emotionally charged situation.
"As caregivers we need to stop and think," Maxfield says. "You need to think about the situation, what is really happening, identify options and then plan." Maxfields first key word is STOP.
S == stop
stop doing whatever it is you are doing
T == think
think about what you are doing, why you are doing it, and what is happening when you are doing what you are
O == options
if what you are doing isnt working, what else can you do
P == plan
look at things from a different perspective and try something new
H == happening
what is really happening?
E == emotions
what are the emotions generated by the happening from the elders and caregivers points of view
L == listening
Are you listening to what the elder is saying both verbally and physically?
P == planning
Plan new ways to handle on-going and changing problems
Look at what is happening, she says, particularly in relation to emotions. "Look at the elders emotions and look at your own emotions. What is happening? Listen to the care recipient and then plan accordingly," notes Maxfield. Often the caregiver works and either rushes to help a parent before she leaves the house or when she comes home, after a tiring day. She relates the story of a daughter who went to her parents home early in the morning in order to get her mother (a stroke victim) up, out of bed, bathed and dressed before she went to work. The daughter did not want anyone to visit her parents and not find her mother perfectly groomed. However, the mother had always been a late sleeper, and did not like to be forced to get up so early. So emotions flared.
"The daughter approached the elder in a rush. She imposed her time frame and wishes on the mother. The daughters tolerance level was down when the elder couldnt go at the same pace. The daughter was doing too much herself and not using available help," she says. Also, the daughters resentment in having her daily routine interrupted flowed over to the mother. (It probably also overflowed into her work place.)
Maxfield says that there was no reason why the mother had to be bathed first thing in the morning. A bath could have been done at night. Also, the father was home during the day and could help his wife with washing her face and brushing her teeth in the morning. And at night the daughter might not be so rushed and could spend quality time with the mother.
ADVICE: STOP. Follow the elders own routine rather than the caregivers. It is less stressful for everyone. Other STOPS and to dos: Use the products the elder has used whether it is for personal care purposes or food. They are comfortable with these and will be more accepting. There will be less resentment and bad feelings.
The "H"appening of the HELP acronym deals with reality. What is happening? Clarify it.
The "E"motional element of the HELP acronym is also very important. Caregivers need to understand where the elder is mentally and emotionally, especially if the elder is confused, has dementia or Alzheimers. In many cases, behavior problems can be resolved by using the HELP process.
Maxfield relates the story of a woman who fought attempts to bathe her. "She was afraid of being hurt. She couldnt understand what was being said because her hearing aid had been taken out so it wouldnt get wet. Her glasses also had been taken off, so they wouldnt get wet. So the woman was afraid of where she was being taken to. And if she couldnt remember who the caregiver was, there was further fear because there was no trust," she says.
Each time the caregiver deals with a confused person, she needs to re-establish a rapport before doing the task, Maxfield advises. "They dont know you. They dont trust you. Therefore they will fight you."
Aggression, verbal or physical, is often a response to intrusion into a persons personal space, and may be more of a defensive reaction than an expression of real anger.
ADVICE: clarify what is really happening and why. What is the person really reacting to? Identify what the person likes and is comfortable with. Establish a comfortable environment before the chore, e.g. bathing.
One women, she says, liked to sing. Singing put her in a good mood and she was more receptive to the caregivers bathing her and doing other things for her.
In both the STOP and HELP acronyms, the world "planning" is the step that will determine the success -- or problems -- in caregiving.
Says Maxfield, "planning needs to be done for both the elder and the caregiver. Continuous planning outside a crisis environment."
Maxfield suggests writing down plans of action, with names and telephone numbers of resource people so that in the time of a crisis a name on that piece of paper may be the needed lifeline. "Make yourself a list of who can help out given a particular situation and how they can help. Include names of people you can also call for emotional support. And when there is a crisis write down what happened and how you handled it, what was successful. People tend to forget what worked in one crisis after time has passed," she notes.
She also suggests sharing the plans with others so they know what will be needed and might work given a crisis.
Maxfield says that often caregivers wear down and face the guilt trap. "They feel bound by their religion and honor to give back everything to their parent. Often the parent will continually remind the adult child of their sacrifices when the child was growing up."
Her best advice: Allow people to help you plan when you are in a calm state of affairs and not in a crisis. Plan for yourself as well as the care recipient. And call for help!
This material is copyrighted by Carol Abaya Associates and cannot be reproduced in any manner, print, or electronically.