Caregiver Burnout

“Before a catastrophe, we can’t imagine coping with the burdens that might confront us in a dire moment.  Then when that moment arrives, we suddenly find that we have resources inside us that we knew nothing about.” – Christopher Reeve

Over the past several months I have had a number of Healthy Mind – Healthy Future readers contact me requesting I once again publish my column from late last year on “caregiver burnout”.

In our society we oftentimes rely on families to provide care for a family member with a disability.  In fact, recent studies have shown that some 80% of such care is provided by family members; at a work value of approximately $400 billion per year.  If it were not for family members providing this care U.S. healthcare costs would be some 15-20% higher than they already are.

Families do not have to bear their burden alone.  Extended family, neighbors, religious groups, not-for-profit organizations, and other non-governmental social institutions often lend a hand.  Yes, there is Medicare and Medi-Cal which pay for some in-home assistance, day services and for certain institutions (e.g. nursing homes), but does nothing of significance to support families who do not turn to the government for care giving.  The question of how and to what extent government should provide care for people with disabilities and support their family caregivers is a complex one given the many different forms family care giving can have:

  • Working age adults take care of their parents, grandparents, or siblings.
  • Grandparents and other relatives raising grandchildren, nieces, nephews, and cousins because their biological parents cannot.
  • Children providing care for siblings, parents, and/or grandparents.
  • Parents care for young children and adolescents with disabilities as well as grown-up children with disabilities.
  • Married people and people in long term committed relationships taking care of their spouses and partners.

Not only are there differing relationships of family members and their caregivers, there are a wide range of disabilities being attended to.  Some are short-lived, but many are long-term.  Some are physical and others mental.  Although each form of family care giving has its own dynamics there are some common elements of care giving.

  • The vast majority of caregivers have great difficulty getting the services either they, or their family members, need.  This is primarily because:

v  There is a disgraceful shortage of services.

v  Most people do not know which services would be helpful, or how to access them when they do exist.

v  Caregivers often need help at the moment of crisis, and except for emergency rooms, there are hardly any that are available at such a time.

  • Physicians and other treatment professionals all too often assume that family members will be caregivers no matter what.  Although many physicians I know are bright enough to assign a social worker, or other such professional, to assist the person assumed to be the caregiver to work through just what it is that needs to be done, all too many family caregivers I have met report stories that are quite the opposite.  Actually falling upon their shoulders to help the professionals think through what needs to be done to help manage the family member with a disability.  At the root of this problem is the fact that all too many healthcare professionals fail to acknowledge the family caregiver as an equal amongst the members of the treatment team.
  • Family care giving is incredibly difficult and extremely stressful.  The average family caregiver of an older adult spends almost twenty hours per week attending to them.  It is exceptionally hard economically, and particularly difficult emotionally.  The fact that a close family member has a disability can often be the source of great sadness.  How exactly is the best way to take care of the family member with a disability is all too often a source of conflict within the family as well.  Caregiver burnout is quite commonplace as the stress leaves caregivers at a heightened risk of developing major depressive and anxiety disorders, as well as physical illness.

There are clearly many more aspects to the challenges of being a family caregiver, but these three are at the root of what needs to be addressed in our healthcare system policies in order to create a strategy that provides true support and helpful services to the caregivers of family members with disabilities.

Parents, spouses, adult children and other caregivers of individuals with illnesses and disabilities do not have special gifts.  They are very average people who tap into their superhuman strengths which we all have, but do not always need to draw upon.

Caregiver burnout can happen at any age and at any time.  It is often seen when a spouse becomes ill, when caring for an elderly spouse or parent, or when faced with exceptional parenting challenges of a young child with a disability.  Take a few moments and think about what it would be like if suddenly you were so physically ill or injured that you could not take care of yourself.  Think about the people in your life; your spouse, your children, your friends and relatives.  Think long and hard about who you would want to have taking care of you.  Who is it that you would want to depend on?  Now, consider the prospect that the person caring for you has had to move into your home in order to appropriately care for you. They may have given up their job.  They may have given up their friends.  And, they do all this because they love you; likely the penultimate love for another person.

Let us then say your illness or recovery time is many many times longer than anyone ever envisioned.  Or, you learn that you may never fully recover.  And, throughout this entire time the same kind, compassionate person has been your caregiver.   Helping you bathe, cooking your meals, taking you to doctor appointments, and helping you go to the bathroom.  Two years have passed, maybe three, maybe even more, and this astonishing individual has not had a vacation, or even been away from you for more than a day.  They worry that no one else can truly understand what you need.  This may indeed sound wonderful, to have someone so totally committed to you.  But, guess what?  It cannot, it absolutely cannot, go on forever.  Burnout will inevitably rear its ugly head.  It will exhibit itself as constant fatigue, depression, and a declining interest in engaging in outside activities.  It may include further withdrawal from social contacts, or maybe an increase in the use of alcohol, caffeine, or other stimulants.  And, these are just some of the symptoms.

Along with these symptoms the quality of care ultimately diminishes.  Impatience, anger, and even abuse can happen in extreme cases.  Caregivers will often not see, or admit, these symptoms in themselves.  If you are a caregiver, please think long and hard about what other people are telling you.  Think about the possibility of burnout.  If enough people are saying the same thing to you, it is probably true.  Take a break!  Get out of the house!  Two of the most difficult things to do are to admit that you do need a break and, to reach out for the help.   For your own sake, for your own mental health, develop and maintain a network of friends and colleagues, and attend a support group.  Even a group that does not specifically match the diagnosis or care you are giving will be of benefit.  Talking to other people who understand what you are experiencing can be a tremendous relief.  They can also assist you in tapping into resources that you may not have known were available.  Somehow, some way, any way, get a break.  You need a breather.  Guilt free time away from the burdens of care giving is essential.  You do not have to, and cannot, be all things to all people.  Yes, you may in fact be indispensable and irreplaceable to the person you love and care for, but they will survive at least some time without your help.  It is ok to let someone else give his or her best efforts at care so that you can take some time for yourselves.  All caregivers need time to rest, to recuperate, to come back somewhat refreshed.  You cannot continue with superhuman powers indefinitely.  It is imperative to get a break in order to keep yourself physically and emotionally healthy.  If you become sick, or have a medical emergency, who will provide the care you have been giving?  Who will take your place?

Ask any caregiver who has been at it for any length of time and they will tell you that their own health has suffered when the focus was on another person and they neglected to take care of themselves.  Remember that guilt is a self-made emotion.  Yes, we do it to ourselves.  We internalize our actions and reactions.  Guilt is a waste of energy, energy that very much needs to be conserved.  It would be nice if there was some magical wand that could be waved to avoid illness, to avoid dementia, to avoid disabilities, but that wand does not exist, and denial is not going to work for very long when faced with challenging situations.

The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age.  For more information regarding this Association go to http://www.nfcacares.org.  NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers’ lives by removing barriers to health and well being, thereby helping caregivers attain and maintain a healthy mind and healthy future.

Locally, there are agencies available to assist caregivers with support and respite care:

Hospice of Santa Barbara, Inc.
2050 Alameda Padre Serra, Suite 100
Santa Barbara, CA   93103

Phone: (805) 563-8820

www.hospiceofsantabarbara.org

Coast Caregiver Resource Center

1528 Chapala Street, Suite 302
Santa Barbara, CA   93101

Phone:  (805) 962-3600

www.coastcrc.org

Visiting Nurse & Hospice Care of Santa Barbara
Santa Barbara:
222 East Canon Perdido St.
Santa Barbara, CA   93101
Phone:  (805) 965-5555

Santa Ynez:
436 First St Ste 201
Solvang, CA   93463
Phone: (805) 693-5555

www.vnhcsb.org

California Caregiver Resource Centers
www.cacrc.org

To all of the family members who are caregivers, I commend you for your hard work, your strength, your commitment, and your dedication.  Now, go take a break.  Actually, take several breaks over the next weeks and months.  Doing so will help ensure that you, the wondrous giver of care, maintain a healthy mind and healthy future.