CARING FOR THE CAREGIVER: A FAMILY GUIDE
LAKE OSWEGO STAKE WOMEN'S CONFERENCE
February 29, 2011
According to A.A.R.P., 83% of the over 15 million caregivers in the U.S. are unpaid family members and friends with 80% of these care providers being women. If you are reading this, you probably are a caregiver or have someone in your family who is. More and more families are being affected by this challenging situation because:
1. Our population is aging: 8,000 people will turn 60 every year for the next 18 years. These and millions of others, called baby-boomers, have parents who are now in their 80's. They, along with their aging spouses, are needing more and more care.
2. In addition to the thousands of veterans from the Vietnam war, many soldiers are returning from Iraq and Afghanistan who will never be whole, requiring care for the rest of their lives.
3. We have grandparents caring for grandchildren because parents must work full-time.
4. More children are being diagnosed with special needs.
5. With auto-immune diseases and life-threatening illnesses such a cancer still on the rise, we have an increasing number of caregivers serving those who are chronically and terminally ill.
To those of you who are caregivers, our hats are off to you and our hearts go out to you. To those who have a caregiver in your family and to those who may have stewardship over a caregiver, it might be helpful to understand the treacherous path caregivers walk, filled with huge challenges and dangerous risks.
• ISOLATION As the caregiver’s world shrinks because more and more care is required by their loved one, they can become more and more isolated. They have less and less time to meet with friends, attend social events, church services, exercise, and a host of other activities. They may find that they eventually have little time to even talk on the phone or Email. Becoming isolated from family and friends and not able to do the things one loves to do can destroy hope and feeds the despair so common in these situations.
• LACK OF SUPPORT Support seems to be more readily available from family and friends in the short-term scheme of things. We tend to be of service to one another when a temporary or crisis mode exists but when help is needed for months or even years on end, many caregivers feel it is unfair to expect others to stay involved. Extended family members can provide some support but they can live great distances away, have their own challenges and family responsibilities. Friends are well-meaning but many feel uncomfortable providing some of the care requirements like helping with personal hygiene, dispensing medications, especially injections, or even communicating effectively. Sometimes lack of support exists because the loved one and/or the caregiver does not want others to know what is really going on. They may have difficulty sharing what they perceive to be “private” matters. Government-sponsored programs can be costly or require certain qualifiers and many resources are only available at inconvenient times or locations. Loneliness, feelings of abandonment and resentment can come with lack of support.
• INEXPERIENCE Professional caregivers have classes and other opportunities to learn how to provide care in a variety of situations. However, family caregivers oftentimes have no clue about what they should do or not do, what to say or not say, where or when to find help or even much about their loved one’s issues. Family caregivers can get easily confused, frustrated and overwhelmed because they are forced to function in uncharted waters. Navigating through the medical and legal communities, government agencies and insurance companies can compound feelings of inadequacy. Fear, anxiety, pressure, guilt and stress often come with inexperience.
• CHANGE AND TRANSITION “Everything changes, nothing remains without change.” -The Buddha For the caregiver, change becomes a much bigger part of daily life and can lead to feelings of insecurity. Change can be uncomfortable in the best of times. Moving, learning a new job, getting married, starting a family, retiring, all are exciting events but they can bring with them some anxiety, fear of the unknown, and even unexpected challenges.
When dealing with the disabled, those with chronic illness, and the aging adult, however, change is rarely exciting. It usually signals an unfortunate consequence, upheaval, an “end” of something, a shift to a “new normal”. This can be painful for both the caregiver and the care receiver who usually is the one experiencing some type of loss. In making a change, caregivers can feel a sense of self-doubt and even guilt. Their loss can come in the form of missing what had become a comfortable routine, a reliance upon what the loved one had been able to do, a realization that the past cannot be recaptured and the future is now even more uncertain. And if a change occurs that is not anticipated, both the caregiver and the care receiver can be thrown into a crisis mode which hardly helps the situation.
In his book, Transitions, William Bridges says that whenever a change occurs a transition follows. “Change is the external situation...transition is the internal emotional process we go through to come to terms with what has changed.” Whenever we experience a transition, there can be feelings of confusion, emptiness, grief and anxiety.
• MAKING DIFFICULT DECISIONS Increased needs of the care receiver, a decrease in the caregiver’s ability to provide care, or other changing circumstances may require making difficult decisions. This could include determining if a loved one is still safe driving, adjusting financial and legal arrangements, hiring in-home help, or moving a loved one into a different care setting.
Making caregiving decisions can bring upon great stress and fear because: 1. these decisions mean change in the care receiver’s life; 2. there are no guarantees a decision will work; 3. you can do your best and still wonder if you are making the right choice.
It can also be very stressful to abide by the decisions of the care receiver, particularly if you don’t agree. “Please don’t tell anyone about this” or “Just tell them I’m fine” or “It’s my life and I don’t want you telling me what to do,” can all bring frustation, feelings of helplessness, or even resentment.
• UNREALISTIC EXPECTATIONS, PERFORMANCE ANXIETY Many caregivers put themselves at risk when they try to do it all, all of the time and do it well. They hear or read stories about other caregivers who “never complain” or are “always so patient and loving” or who “take such extraordinary care” of their loved one. There can be tremendous pressure to continually step up to the plate and be the one whom everyone admires for the countless years of dedicated, compassionate service. To express any form of weakness or negative emotion not only impacts their relationship with their loved one, but also risks falling off that path to sainthood and is wrought with feelings of disappointment, remorse, guilt or even shame. This is not a pretty place to be when caring for someone else and particularly caring for yourself.
• GRIEF When you have a family caregiver living without help in the home, his or her job as caregiver eventually can overtake all other aspects of their life until they sadly become the sum of their responsibilities, to others and unfortunately, to themselves. This obviously affects a person’s sense of self, how they manage their lives and how they relate to those around them. The process of loosing yourself just adds to the continuous grieving process that exists in these situations.
• The stages of the grief come into play because of the many losses that are experienced. As caregivers devote time to the actual care, they lose time to spend on other important and/or enjoyable activities. They can lose their sense of financial security, especially if the care receiver has been the breadwinner, or if medical bills begin to mount up or if their home has to be adjusted to meet the physical needs of their loved one. Many lose the relationship they once had with a sibling, a spouse or a parent as they become their parent and nurse. They can lose their independence and sense of self-reliance. They lose friends and other close relationships. Caring spouses can lose opportunities for intimacy. Most cargivers lose sleep. Some lose hope. Others lose their employment. They can lose perspective, their health and sense of well-being. They lose their dreams. According to Michael Leming and George Dickenson, in The Grieving Process, "Whenever one's identity and social order face the possibility of destruction, there is a natural tendency to feel angry, frustrated, helpless, and/or hurt. The volatile reactions of terror, hatred, resentment, and jealousy are often experienced as emotional manifestations of these feelings."
In addition, when someone normally experiences a loss of any kind, they move through the different stages of the grieving process as described by Dr. Elizabeth Kubler-Ross: from denial, anger, bargaining, then depression and finally, acceptance. More recent publications by John Bowlby, a noted psychiatrist, indicate that this process can also include shock and numbness, yearning and searching, disorganization, despair and withdrawal. The person simply feels unable to come to terms with what just occurred.
Take all of these emotions and, rather than move through them to eventual healing, put them in the context of caregiving, and you have caregivers struggling to leave this process and move on because the losses are incremental and continual. Add to that the likelihood that the care receiver could be equally bereft, and you have an emotionally-charged environment that few outside the home understand.
• FINANCIAL STRESS Medicare, Medicaide and a majority of private medical insurance plans offer little or nothing in the way of payments for home-care assistance. Many caregiving families find themselves reaching into their own pockets, often straining family budgets to provide necessary goods and services. Some caregivers have to pass up job transfers or promotions. Many abandon hobbies or forgo vacations due to lack of funds. And for those on a fixed income, additional caregiving expenses can mean cutting back on even the basics of life.
• PERSONAL STRESS All of these challenges and risks bring with them not only powerful emotions but tremendous stress. The level of stress is influenced by many factors, including: 1. whether your caregiving is voluntary or not, 2. your relationship with the care receiver, 3. your coping abilities, 4. your caregiving situation, and 5. whether or not support is available. Stress affects all of our body systems, our mental health, and our emotional well-being. It can compromise our spirituality, our relationships, our lifestyle and our decision-making.
• EMOTIONAL ABUSE This challenge is something that few want to recognize much less discuss but it can and does exist and can be pervasive and cancerous in it’s destruction of relationships. Most commonly, it comes from the care receiver but it can originate from other family members or even close, albeit well-meaning friends. Even in the best of situations where the caregiver is emotionally healthy, situations can occur that trigger emotional outbursts or comments from others that sting. Rather than feeling supported, respected and appreciated, they are often criticized, misunderstood, harshly judged or ignored.
Some care receivers find it difficult to manage their feelings and lash out, manipulate, withdraw and/or generally disregard the feelings of those around them. They can become very self-absorbed, selfish, even demanding, using their illness or disability as an excuse to treat others in an unkind way. They can also choose to use their condition to control others, especially when they feel out of control themselves. Caregivers oftentimes will excuse these behaviors in their own mind. “He’s just having a bad day.” “It’s the pain talking,” “It’s the medications or the side-effects making her do this,” or worse, “I’m sure he’s right and I need to be a better parent, spouse, etc.” There can be huge guilt trips associated with emotional abuse as well as low self-esteem and depression.
It can be very tempting for caregivers to swallow their negative feelings, concerns, and complaints.
If they do say something less than positive, their loved one might feel like a burden. Their loved one may invalidate the caregiver's feelings by responding with more serious complaints. I call this the “one-up-manship” of caregiving. The loved one can invariably come up with something more painful, more difficult, or more urgent than the caregiver’s expressed issue. Finally, it just becomes easier and less emotionally painful to keep things to oneself. However, in the end, this can cause serious withdrawal or a stronger temptation to bail out.
RISKS OF BAIL-OUT & BURN-OUT
All of the above challenges can contribute to the two greatest risks for caregivers: bail-out and burn-out. Would you be shocked to learn that the divorce rate among caregivers is higher than the national average? Whether care is being provided for an adult child, a sibling, a parent or a spouse, when faced with years, perhaps decades of a life filled with these challenges, it is extremely tempting at times to just walk away in hopes of recapturing a more fulfilling, healthy, balanced life.
When discussing burn-out, it might be helpful to know that the mortality rate among caregivers is higher than that of those for whom they provide constant care. The main contributing factor is self-neglect. Add stress and exhaustion to self-neglect and you have what medical professionals have begun calling, “caregiver syndrome”.
From a study at the University of Ohio: “Caregivers appear more likely than non-caregivers to get infectious diseases and are slower to heal from wounds. They also have greatly elevated blood levels of a chemical linked to chronic inflamation. They are at greater risk for heart disease, arthritis, diabetes, cancer and other diseases. These blood levels are still higher three years after caregiving duties end, especially among care providers over 65.”
Then, particularly among us baby-boomers and our parents, health issues arise simply as a part of the aging process. Mild-to-moderate hearing, vision and memory loss, joint pain, bladder issues, osteoporosis, hormone imbalances, and a whole host of other conditions, commonly mentioned in many television commercials, plague those of us who must care for others. If these health concerns are not treated in a timely and effective manner, they can cause much more serious problems. Add to that sleep deprivation, stress, depression and pre-existing conditions such as diabetes, high blood pressure or high cholesterol, and you have a potentially high risk for hospitalization, surgery or even death.
Why would someone neglect themselves medically when caring for someone else?
1. Because oftentimes there just isn’t time to even turn around. Simultaneous work, homemaking and care responsibilities can squeeze all personal time from the calendar.
2. Because if and when they do get a break they would rather watch a movie, play with grandchildren, get a haircut or sleep, either because they’re exhausted or depressed or both. If they do get a break, many times it’s in the evening or on the weekend when medical offices and labs are closed. .
3. Some caregivers may be in denial about their own needs, think they can power-through their health challenges or succumb to what I call the Scarlet O’Hara syndrome: they’ll just think about it tomorrow or when their loved one is “feeling better.”
So what can we do to manage all of these emotions, challenges, and risks? What can caregivers do to increase their coping skills? CTR!
C = COMMUNICATION
Caregiving offers enough challenges without having to struggle to be heard and understood. Often the words we choose to say, or choose not to say, can have a major impact on our relationships. For many caregivers, a big hurdle is getting needed information from healthcare providers and/or getting help from family members. Some caregivers are afraid to ask for help for fear of becoming a burden or risk loosing the help they already receive. Some feel they shouldn't have to ask for help, that others should see what they need or read their mind and offer to help. Others don't set limits or communicate those limits because they feel guilty saying no or because they don't want to let people down, disappoint them or have them think less of them.
Speaking up can be daunting! Sometimes saying nothing seems easier or safer but eventually issues need attention and decisions must be made. Telling others how you are feeling and what you need is a vital component of self-care.
One of the best tools you can use as a caregiver is to be able to communicate effectively. Using “I” messages, being clear and specific, speaking directly to the person involved and being a good listener all can contribute to good communication. In addition to respecting the rights or feelings of other people by what you say or do, it is also best to be open, honest and timely so both of you can address concerns before they become overwhelming and distructive. “I really need to get to the dentist. Is there a time that would be convenient for you to stay with Grandpa so I can make an appointment?”
Communicating with others is a necessary step in helping them understand your challenges and concerns so they can provide the support you so desperately deserve. Selected family members, a compassionate Visiting Teacher and/or Home Teacher, a close friend, healthcare professional, church leaders, all can be valuable resources in managing yourself emotionally.
Communicating with the care receiver is vital in maintaining a relationship that is livable. Sometimes uncomfortable or emotionally-charged issues are better discussed in a non-threatening environment. e.g. Talking within the framework of a FHE where the Spirit is strong, is more beneficial than bringing up issues in the heat of a difficult moment. It may be helpful to seek advice before approaching the care receiver about a particular concern. Considering options and consequences beforehand, planning your approach and remembering to be respectful can all move a discussion in the right direction.
One key item to communicate to others and perhaps, more importantly to yourself, is that being a caregiver is what you do. It is not who you are. Caregiving is your job. It should not soley define you. Once this is understood and respected, it will help tremendously with how you manage your time and energy during this difficult chapter in your life. It is unfortunately common in our society to define the handicapped by their disability. We label individuals by their disease or disorder, forgetting that they are individuals first, children of God, with thoughts, ideas, and opinions, with talents and skills, with feelings and sensitivities. Caregivers as well can be looked upon as only that; one-dimensional players on the family stage, or worse, backstage to the drama of the care receiver.
Communicating to others that you are happy to be of service but simply not capable of working 24-7 will help everyone keep things in perspective even if the care receiver cannot. Women who have mothered little ones seem to more readily understand what it's like to be “on-call” and the sacrifices that are made while raising tender spirits toward greater independence. However, with caregiving, the constant vigil and sacrifices made are not rewarded with maturity and self-reliance. They are usually met with just the opposite: a decline in capabilities. Unlike the light at the end of the parenting tunnel, that is, graduation, mission, marriage, etc., in a caregiving situation, there is rarely any end in sight. Letting others know that the long-haul will require more of a community effort is vital in assuring your ability to function in this vital role.
R = RESPITE
Before you consider various forms of respite, it is important to recognize what respite is not. Respite isn't exchanging one stressful activity for another. Nor is it focusing on the very thing from which you need respite! It can be very benficial to attend a series of caregiving classes, on-going support groups and occasional workshops, to read books about caregiving, to visit caregiving websites and talk with family and friends about your caregiving situation but it is not considered respite to do so.
Respite is taking a break physically, emotionally, and mentally from the demands of your caregiving responsibilities. It is an opportunity to focus on yourself and others besides the care receiver. It is an attempt to fill the well from which your service flows. It is personal, on-going and absolutely critical in maintaining your sense of self and keeping as much balance as possible in your life. Caregiving can throw a lot of normal routines out of whack and is so frought with risks and challenges that without adequate respite, caregivers are headed for very serious consequences.
Physical respite can be as simple as taking a walk around the block or as elaborate as a ten-day cruise or a month-long stay at a health spa. Whatever form of respite is desired should be as regular as possible, something to which the caregiver can look forward as well as enjoy in the moment. Some respite activities even allow for fond memories to sustain the sense of self-care that they provide.
Although it can be very helpful and thoughtful for others to offer respite opportunitues, it is equally beneficial for caregivers to learn how to provide their own forms of respite. This helps with their sense of self-reliance and provides them with some control which can be sorely lacking in caregiving situations.
Practicing self-care means that you attend to your own health care needs, get proper rest and nutrition, exercise regularly, take time off without feeling guilty, reward yourself, and seek and accept the support of others. No one has to feel like they are alone in this journey
T = TEMPLE EXPERIENCE
Caregivers need another component of self-care that is often overlooked or neglected. It is the need to create what I call Temple experiences. A Temple experience can happen anywhere, not just in the Temple. It embodies the feelings we can experience as if we were in the House of the Lord. Peace, comfort, a deep spiritual connection to Diety, inspiration and personal revelation, an eternal perspective
all contribute to self-care as they nurture our spiritual self. A Temple experience can be as profound as a Priesthood blessing or as simple as feeling someone is praying for you.
Anytime you have a light-bulb moment, a witness from the Holy Ghost that you are on the right track, that a prayer has been answered, a prompting to do or say something, even music that speaks to you can become a Temple experience. The closeness we feel to the Godhead in the Temple extends to include these sacred little moments. They are fueled by our faith, strengthened by scripture study, powered by prayer, fed by fasting, rewarded by recognition and extended as we express gratitude for them. There is tremendous power in gratitude. It invites the Spirit almost immediately, it helps to balance our world, it salves our soul, it elevates our conversations and keeps us focused in healthy ways.
Recognizing the necessity of self care and respite, learning how to communicate effectively, and creating Temple experiences for ourselves can all contribute to self care and better coping skills as we navigate the turbulent waters of caregiving. (See v. 2 of “Master, the Tempest Is Raging”, Hymns 105.)
“The Lord worketh in many ways to the salvation of his people.” - Alma 24:27
“Do not give in to sadness or desperation for what you are going through today. The Savior knows how you feel. He knows exactly and with perfection what is being allowed to happen to you in your life at this precise moment.”
“God's purpose for you is simply perfect. He wants to show you things that only you can understand by living what you are living and by being in the place you are now.”
MAY GOD GIVE YOU:
For every storm, a rainbow,
For every tear, a smile,
For every care, a promise,
And a blessing in each trial.
For every problem life sends,
A faithful friend to share,
For every sigh a sweet song,
And an answer for each prayer.
It is my prayer that we will move forward under the Savior's watchful wing as we continue to be instruments in his hands toward our loved ones. May we move on, relieved, renewed, and recommitted as we access His atoning sacrifice.
Sometimes we wonder, “What did I do to deserve this?' or “Why did God have to do this to me?'
Here is a wonderful explanation!
A daughter is telling her mother how everything is going wrong: she's failing algebra, her boyfriend broke up with her and her best friend is moving away. Meanwhile, her mother is baking a cake and asks her daughter if she would like a snack. The daughter replies, “Absolutely Mom, I love your cake!”
“Here, have some cooking oil,” her mother offers.
“Yuck”says her daughter.
“How about a couple of raw eggs?'” “Gross, Mom!”
“Would you like some flour then?
Or maybe baking soda?'”
“Mom, those are all yucky!”
To which the mother replies:
“Yes, all those things seem bad all by themselves.
But when they are put together in the
right way, they make a wonderfully delicious cake.”
God works the same way. Many times we wonder why He would let us go through such difficult times. But God knows that when He puts these things all in His order, they always work for good. We just have to trust Him and, eventually, they will all make something wonderful!
That “something wonderful” will be you, ready to take your place in the presence of the Lord, with your loved one whom you are serving beyond belief at this time. All will be made whole, all will be forgiven, all will be perfect and you will have your reward, far, far greater than you can even imagine. This is more than my prayer for you, this is my testimony in the name of Jesus Christ, Amen.