Caregiving Blog: The Duty to Caregive; How to Manage Caregiver Burnout When You Hate What Caregiving is Doing to Your Life
Caregivers accept the duty to caregive without realizing how quickly life changes. The question of “how to manage caregiver burnout” when you hate what caregiving is doing to your life is commonly asked by caregivers for aging parents, spouses, and other family members.
Family caregivers feel overwhelmed. Aging parents and spouses want to remain at home, while caregivers are not always sure how to make this happen. Caregivers worry about what happens when things get worse? Caregiver burnout happens when caregivers feel a duty to caregive and when balance in life disappears.
How to Manage Caregiver Burnout
Caregiving burnout is real. The experiences of burnout negatively affects the physical and emotional health of caregivers. How to manage burnout when you hate what caregiving is doing to your life comes in two parts.
The first part is finding ways to better manage care in the home or wherever a loved one lives to avoid unexpected events and health declines. The second part is taking care of caregiver health and well-being. Managing caregiving burnout is a balancing act.
Caregivers are thrown into a whirlwind of activity when caregiving starts. After a period of time, a routine settles in but is changed by unexpected events. Ups and downs occur. Time for tasks and projects increases and decreases. When you hate what caregiving is doing to your life, managing your life and caregiving for a loved one feels impossible.
Caregivers Fear Making the Wrong Decision
A sinking feeling in the pit of the stomach is commonly described to me by caregivers. Other caregivers feel like they are drowning because of their duty to caregive. Caregiving responsibilities take over life. Many caregivers do not realize they are experiencing caregiver burnout, they do know they feel emotionally upset and physically drained.
Caregiving is unfamiliar territory. There are usually few warnings that one is about to become a caregiver — unless a loved one has experienced declining health over a period of time.
Fear of making the wrong decision is a common caregiving concern that results in caregiver burnout. Feelings of stress and anxiety make caregivers hate what caregiving is doing to their lives. Caregivers learn by trial and error, which is not always ideal. Few caregivers ask for help or seek caregiving support which can be of significant benefit to the caregiver and to the care of loved ones.
When caregivers become overwhelmed, they fail to manage caregiving burnout. Many continue to go through the daily routine but feel emotionally distraught.
The Practicalities of Keeping Loved Ones at Home
Most aging adults want to remain in their homes but are unsure of what it takes to avoid placement in a nursing home. Caregivers want the same but are equally unsure.
Here are 5 areas of risk for aging adults that if not managed will result in having to leave the home for a care facility. Talking to aging parents and loved ones about these risks may improve the balance in the caregiving relationship to more of a shared caregiving responsibility.
1 Difficulty Performing Activities of Daily Living
Activities of daily living include bathing, managing continence, dressing, eating, toileting, transfers, and mobility. Physical weakness results in falls. Falls result in physical injuries like fractures that make mobility more difficult.
Declining mobility is a path to leaving the home because of increased safety concerns and the likelihood of more falls. Safe transfers meaning standing from a chair and rising from the bed are important to remaining at home safely.
The ability to independently perform personal hygiene tasks like bathing, managing continence, and dressing supports self-esteem. Family caregivers often assist with these activities for the purpose of safety and to avoid falls.
The ability to prepare meals and eat a good diet is another factor in remaining at home. A daily routine of completing activities of daily living becomes like a job after retirement. This job is what allows older adults to remain at home and out of care facilities. When caregivers physically help with hands-on care for aging parents and loved ones caregiver burnout is more likely to occur.
2 Managing Incontinence
At the time loved ones have difficulty managing incontinence, assistance from family members is often required. Aging parents and loved ones may be embarrassed to discuss incontinence. Solutions like disposable underwear, portable commodes, and urinals exist. Items to protect the bed like mattress and pillow protectors, and items to protect furniture like lap pads are also good ideas.
In spousal situations where one spouse is the caregiver, managing incontinence may become the reason that a loved one is moved to a nursing home or care facility. Managing multiple loads of laundry and clothing each day can be exhausting in addition to other caregiving responsibilities.
In these situations, caregiving burnout happens quickly. Many caregivers do not have strategies or tactics to manage caregiver burnout.
3 Managing Medications
Taking medications as directed is a concern for older adults who may forget to have prescriptions filled, forget to take medications, or take medications incorrectly. Medication issues are the number 7 reason for emergency room visits by older adults. Assistance from family to pick up and set up medications is often necessary.
4 Poor Nutrition
It may be surprising that 35-50% of aging adults are mal-nutritioned. In most situations, it is difficult to tell if a person has poor nutrition by looking at the body. Weight loss occurs in older adults quickly.
Poor nutrition also relates to poor digestion. Many older adults complain of indigestion which results in limiting the diet and eating less. Poor nutrition relates to more frequent illness, days of not feeling good, infections and skin wounds that do not heal.
Good nutrition is very important for older adults. A single serious illness can be devastating and result in a significant weight loss that places health at risk. Options like family delivering meals or having Meals on Wheels come to the home may help improve poor nutritional status.
Dehydration is a revolving door of concern for older adults. I tie dehydration and poor physical condition together because staying hydrated can improve physical condition.
Older adults hesitate to drink because they don’t want to have to get up and walk to the bathroom. Dehydration results in urinary tract infections and mental disorientation that results in a visit to the emergency room. Falls occur as a result of urinary tract infections.
One event causes another, and another. Staying hydrated should be thought of as a positive, as a preventative measure. Getting up to fill a glass of water is exercise. Getting up to go to the bathroom is exercise. Physical activity like walking strengthens the body. Physical body strength avoids falls. Avoiding falls helps older adults remain in the home.
If only older adults would think about hydration in this manner, falls and emergency room visits could be avoided. Walking is a simple activity that supports physical strength and balance for individuals of all ages.
6 Memory Loss
Memory loss is an unpredictable factor that eventually results in safety concerns and moving to a care facility. When memory loss is identified early, preventative measures can be taken.
Statistics indicate that 50% of aging adults over the age of 85 have dementia and are undiagnosed. Being proactive and seeking a diagnosis when early signs are noticed is the best preventative measure to remaining at home as long as possible. Caregivers of loved ones diagnosed with Alzheimer’s and dementia experience higher levels of stress and caregiver burnout.
What Happens When Things Get Worse?
Caregivers worry about what happens when things get worse. This worry becomes part of the duty of caregiving and how to manage caregiver burnout when you hate what caregiving is doing to your life.
An interrupted night’s sleep becomes a dream of the past for caregivers. Phone calls from aging parents at work increase in number. To-do lists grow in size and in scope. Caregiving becomes like a part-time job and takes over the caregiver’s life.
A solution to what happens when things get worse is initiating care discussions with loved ones about areas of concern. Having these discussions can be difficult if a loved one denies that help is needed or that health is becoming worse.
Older adults fear losing their independence. Many do not want to have to rely on family members to be caregivers.
Here are areas of common disagreement between aging parents and adult children caregivers:
1 Driving Accidents
Giving up the car keys represents a loss of independence for older adults even though they may realize difficulty exists. Loved ones diagnosed with memory loss lack insight into the risks of driving and injuring another person. They will often swear that they drive as well today as they drove at the age of 16.
Slower reflexes, physical weakness, vision, and hearing difficulty contribute to decreased driving skills. Before having the discussion about taking away the car keys, have a plan to provide transportation for your loved one. Having a transportation plan may ease the conversation when a solution is presented at the same time the concern about driving is discussed.
Money can be another sore subject between aging parents and adult children caregivers. Whether your parents have the money or not they may not want to discuss the subject with you.
It’s important to talk about the costs of care to see if the information is shocking to your parents or if they are able and prepared to pay for care. Having power of attorney documents should occur at the same time.
If your parents hesitate to talk to you about money, to whom will they talk? Have they appointed a financial power of attorney who is assisting them with financial matters? If not ask who they will appoint if not you.
Care for aging loved ones can be expensive if paying for care was not in a financial plan. In-home caregivers, assisted living, memory care, and nursing homes can be an unpleasant surprise.
3 Safety in the Home
Discussing safety in the home with aging parents can be another difficult subject. Installing grab bars in the shower and other safety equipment is practical. Aging parents may deny the need because they don’t want to appear that they need help.
An honest discussion about staying in the home and safety may sway parents in favor of installing safety equipment. Falls and fractures result in older adults leaving the home for a care facility. Nearly 70% of falls in the home are preventable.
Add talking about home safety to the list if you have not yet spoken to loved ones about this subject. Small precautions can have major benefits.
Examples are installing nightlights in the bathroom and hallways for night time use. Raised toilet seats and shower seats in the bathroom improve safety and prevent falls. Options for increasing safety in the home are many.
4 Managing Medical Concerns
If a loved one has not been proactive about health during a lifetime, they may have many chronic medical conditions by the time aging occurs. Some individuals have a great dislike of going to the doctor. Others are proactive and attend appointments as scheduled.
Having medical care discussions with aging parents can be positive and support preventative measures that support staying at home. Independence is supported by good health and the ability to manage health concerns already identified.
While changing a lifestyle or habits may not be possible, even small changes like eating oatmeal to decrease cholesterol can be positive. Talk to loved ones about their health and also look at your health habits. Caregivers can learn lessons from aging family members about the benefits of prevention.
5 Talking about Care Wishes
This discussion follows the discussion about being proactive about care. If your loved one has not talked about what they would want if an unexpected event happened now is the time. Does your loved one have a medical power of attorney?
If yes, have care wishes been discussed with the medical power of attorney? Arguing about care wishes at the time an emergency happens is not an ideal situation. If no medical power of attorney exists, it’s time for this discussion.
Medical and Financial Power of Attorney
Medical and financial power of attorney is more than a piece of paper with a name listed as the agent. The process of choosing a power of attorney includes many steps.
My experience as a court-appointed guardian, medical and financial power of attorney provided me with the opportunity to experience the best and the worst of care situations. The below are process steps for power of attorney that many caregivers fail to consider. These result from my experience of being the “name on the piece of paper.”
Better than Average Care Results from Power of Attorney Advocacy
Many attorneys do not discuss these steps with the potential power of attorney-client because attorneys do not have caregiving and healthcare experience to know what happens when the documents are put into use and what steps should occur before the documents are initiated. Power of attorney is a process that results in a serious responsibility for the individual appointed as power of attorney.
My experience is based on 1:1 care situations in hospital emergency rooms, nursing homes, care communities, medical offices, and in-home care situations. These experiences were valuable to me in supporting better than average care for my clients.
These experiences allow me to help aging adults and family members through the power of attorney process. Many individuals are unfamiliar with the responsibilities of being a power of attorney. Challenging situations like family disagreements and medical errors occur to which the power of attorney must respond.
Power of Attorney is More Than a Piece of Paper – It’s a Process
It is important for family members creating power of attorney or who already have their documents completed to consider the following:
- Understanding legal terms so that everyone in the family is aware of the responsibility of a power of attorney
- Choosing the right power of attorney; family is not the only or the best choice.
- Discussing care today and desires for care in the future that include wishes listed in a living will.
- Understanding all of the unexpected things that happen so that plans may be made to avoid issues and disagreements that may occur years into the future.
- Being realistic about whether the family will work together when care is needed.
- Taking into account blended and stepfamilies and how this might affect care wishes and the actions of the appointed power of attorney
- Being realistic about whether the power of attorney chosen has the time to devote to being the power of attorney at the time of need.
- Deciding to have an attorney draft the documents or to download and complete documents online.
- Identifying what happens after the documents are drafted and steps to stay in touch with the power of attorney in the event of an unexpected situation.
Being a power of attorney is an extension of being a caregiver. Many caregivers find caregiving to be an unknown. Many individuals appointed a power of attorney feel the same way. They are unfamiliar with the roles and responsibilities of being a power of attorney – which are serious. In many circumstances, even the person appointing the power of attorney is not aware of the responsibilities and duties of the power of attorney.
A medical power of attorney is responsible for making medical decisions including the end of life care decisions. A financial power of attorney is responsible for financial matters and managing money. Both are positions of extreme trust and responsibility. Education in this area benefits all involved and can smooth challenging situations if and when they occur.
How to Manage Caregiver Burnout When You Hate What Caregiving Is Doing to Your Life
All of the above are reasons that the duty to caregive can become overwhelming. Caregiving can be like a full-time job with many roles and responsibilities.
The type of care needs of loved ones depends on many factors that include health status and the level of independence. When more hands-on care is needed, stress by caregivers increases. A diagnosis of Alzheimer’s or dementia increases caregiving stress because of the additional concerns of managing behaviors and the increasing need for hands-on care.
Caregivers of all ages and skill levels benefit from caregiving support. We’ll transition to ideas and recommendations to manage caregiver burnout when you hate what caregiving is doing to your life.
One of the main stresses of caregiving is doing all of the work and tasks and feeling unappreciated. It is true that some parents expect adult children to provide care and feel no need to express appreciation. Other loved ones may have been demanding all of their lives and the need for care brings out the worst in personalities and behaviors. These are truly challenging situations that require greater levels of patience and compassion.
Caregiving can feel like a trap for the caregiver and the aging loved one. Caregivers become trapped by long to-do lists, spending time caregiving during the evenings and weekends outside of a regular full-time job.
Caregivers give up friends and social activities to caregive which is not positive. Caregivers suffer health declines in both emotional and physical health as a result of caregiving.
While caregiving can have many positives, each caregiving situation is different and has different demands. One can hope for the ideal caregiving situation and make the best of difficult situations.
Aging adults feel trapped by aging bodies, having to take medications, being physically limited due to medical conditions, and in some situations being unable to drive or leave the home. Caregiving is rarely an ideal situation but it is a situation where if 50/50 participation can occur then balance at least for a period of time can be achieved.
Stop Believing You are the Only One That Can Provide Care
Another trap for caregivers is that they feel they are the only person who can or will provide care. My recommendation to caregivers is to never take on full caregiving responsibilities if other family members exist.
Share the responsibility from the beginning or you will quickly become the only caregiver. If other family members do not exist or will not agree to provide care then discussions with loved ones must occur about other options.
It is not practical or healthy for a single family member to bear the total responsibility of caring for a loved one. While this frequently happens – change must occur. Caregivers must ask for help and speak up to balance the caregiving situation.
Find Caregiving Support
Finding caregiving support for all caregivers and care receivers is critical. Not talking about feelings about caregiving situations is common and harmful.
Caregivers who experience burnout become angry and resentful about caregiving. Many are afraid to discuss feelings and concerns with the care receiver who is also likely experiencing uncomfortable feelings. Few caregivers know how to manage caregiving burnout without some type of support or education.
Caregiving support groups and courses help caregivers and care receivers talk about caregiving feelings. Courses help improve caregiving skills and increase confidence in navigating the healthcare system and in decision making. So many caregivers fear making the wrong decision.
Caregiving support results in better than average care for loved ones through learned advocacy and increases skills. Feelings of caregiving burnout and hating to what caregiving is doing to life, decrease through talking and learning from caregivers in similar situations.
Caregiving support and courses are a win-win for everyone involved in the caregiving situation. There is an old saying, “an intelligent heart acquires knowledge and the ear if the wise seeks knowledge.” As caregivers, we can never know too much to be able to support the care of loved ones.
Online caregiving support groups and courses are offered by Pamela on an ongoing basis. More information is available on the main page of the website.
Appreciation for even the smallest things in life can turn feelings of caregiving burnout to the positive. Be thankful for a good cup of coffee, your car starting this morning, a loved one eating their entire meal, taking medications, or agreeing to take a shower.
These small accomplishments are blessings. One of my 95-year-old clients was thankful for waking up every morning. How many of us even think that we might not wake up tomorrow?
Simple pleasures like listening to music, reading an inspirational book, or taking a walk can decrease caregiving stress and burnout. Make time daily even for 10, 20, or 30 minutes to find time for yourself. All of these small actions when multiplied and completed on a consistent basis can change negative moods to positive.
What Happened to the Old You?
Feelings of caregiving burnout can result in us forgetting who we were before caregiving. Caregivers have expressed to me that they no longer feel like the spouse, the daughter, or the son, because of the burden and duty of caregiving.
In caregiving, we quickly lose ourselves in the care and service of others. Finding and creating balance can become challenging when caregivers allow caregiving to take over life.
Caregiving represents the unexpected. It is different today than it will be in a week, a month, or a year. It is important to protect ourselves as caregivers. Our physical and emotional health and well-being are at risk from the act of caregiving.
Create daily, weekly, and monthly routines for your benefit. Schedule time for favorite activities and time with friends. Inner strength and great patience are required to continue to caregiver over sustained periods of time. Be strong and remain strong.
Maintain Hope Instead of Hopelessness
Caregiving burnout and stress can quickly result in feelings of hopelessness. In caregiving, all thing are possible with help. Caregivers who think they can do it alone become frustrated and angry about the caregiving situation.
Until caregivers take a step forward to ask for help and to find caregiving support nothing will change. We create our lives and our daily situations, the results that we receive through our actions. If caregiving isn’t working out the way you want, take a look at your actions and the caregiving situation.
Identify what would make the situation better and work toward this. Just as caregiving is work, improving caregiving situations take work.
Balancing Caregiving Emotions
The more we are able to balance caregiving emotions the easier caregiving becomes. Caregiving burnout begins to melt. We think less about what caregiving has done to our lives. More positive things occur in our lives.
When all hope is lost think of the good times with loved ones and use these memories to make it through the difficult days. Remember that one day, our loved ones will no longer be with us. Remember that one day we will need someone to caregive for us.
Kindness and patience are necessary for caregiving as is the ability to reflect and react which is a strategy that I developed. Instead of jumping to a conclusion or immediately responding to a negative situation, taking a moment to separate emotions from facts is helpful.
Whether you ask for 5 or 10 minutes or even an overnight to respond to a situation that is uncertain, unexpected, or threatening, the strategy of reflect and react will smooth and balance caregiving situations.
Managing Worry and Stress
It is possible to manage the worry and stress of caregiving situations. When both the caregiver and the care receiver can and are willing to work together situations ease. Caregiving burnout decreases. Anxiety and worry felt by the care receiver decrease.
Working together rather than at odds benefits caregiving situations. While neither person asked for the experience, we have a duty to love and care for others. This duty goes both ways, from the caregiver to the care receiver and back. Be thankful and appreciate each other.
One of my favorite sayings is:
Do not forget to be kind to strangers, for some who have done this have entertained angels without realizing it. Hebrews 13:2.
Caregivers are angels on earth. Care receivers are angels on earth. It is not until we help each other that we realize that life is precious and that without each other we are nothing.
If you haven’t taken the step to access caregiving support and education the time is now. Relieve caregiving burnout and the feeling that caregiving has overtaken your life. Seek the positive and send the negative away.
Pamela D. Wilson, MS, BS/BA, CG, CSA is a national caregiving expert, advocate and speaker who solves caregiving problems. Since 1999, she has been a direct service provider as a court-appointed guardian, power of attorney, and care manager. In response to the need for accessible, accurate, reliable, and trustworthy information Pamela offers online caregiving support and programming to solve caregiving problems, advance healthcare literacy, and promote self-advocacy. She collaborates with professionals in the areas of estate planning, elder law, and probate, financial planning, and healthcare to raise awareness of and sensitivity to family caregiving and healthcare issues.
®2019 Pamela D. Wilson, All Rights Reserved.