If you are caring for a family member who is physically or mentally disabled because of progressive illness, statistics show that you are most likely exhausted and living beyond your capabilities. According to Family Caregiver Alliance, 85% of unpaid family caregivers do not reach out for help when they need it and 70% report depression.
Caring for and watching someone you love deteriorate before your eyes can be one of life’s most miserable and emotionally painful experiences. It can be such a struggle that “50% of spousal caregivers die before the spouse they are caring for”. (1)
Read on to find out what symptoms can evolve from burnout and how to find respite care for your loved one so that you can take a much needed break.
What is Respite Care?
According to Wake.gov, “Respite Care is a temporary, substitute living arrangement for dependent adults which provides a brief period of relief or rest (usually more than 24-hours) for the family members, guardians, or other people who are their regular caregivers.”
Often, caregivers need a break, but are unaware of their needs because they are too busy caring for their loved one.
Burnout Sneaks Up on Us
Caring for a sick invalid family member can start off feeling ok. It is possible to feel like you are handling things and even be happy that you can take on this responsibility so that your loved one does not have to leave home for care.
- What happens when you slowly burn out and become a shell of your former self?
- What happens when you spend more time taking care of someone else than yourself for months or years?
- What happens to your loved one when you reach the end of yourself and have nowhere to turn?
Burnout is a state of chronic stress in which you can no longer perform your duties. It is noble and self-sacrificing to care for others, but there are ways to care for your loved one without ending up physically and emotionally devastated yourself.
Know Your Limits
There are signs that you are stressed or that your body is exhausted. If you don’t pay attention to these obvious tells, you can reach a level of burnout where you can no longer care for yourself, much less someone else. Choose to take care of yourself too.
According to Sherrie Bourg Carter Psy.D., signs of physical and emotional exhaustion include:
- Chronic fatigue. In the early stages, you may feel a lack of energy and feel tired most days. In the latter stages, you feel physically and emotionally exhausted, drained, and depleted, and you may feel a sense of dread about what lies ahead on any given day.
- Insomnia. In the early stages, you may have trouble falling asleep or staying asleep one or two nights a week. In the latter stages, insomnia may turn into a persistent, nightly ordeal; as exhausted as you are, you can’t sleep.
- Forgetfulness/impaired concentration and attention. Lack of focus and mild forgetfulness are early signs. Later, the problems may get to the point where you can’t get your work done and everything begins to pile up.
- Physical symptoms. Physical symptoms may include chest pain, heart palpitations, shortness of breath, gastrointestinal pain, dizziness, fainting, and/or headaches (all of which should be medically assessed).
- Increased illness. Because your body is depleted, your immune system becomes weakened, making you more vulnerable to infections, colds, flu, and other immune-related medical problems.
- Loss of appetite. In the early stages, you may not feel hungry and may skip a few meals. In the latter stages, you may lose your appetite altogether and begin to lose a significant amount of weight.
- Anxiety. Early on, you may experience mild symptoms of tension, worry, and edginess. As you move closer to burnout, the anxiety may become so serious that it interferes with your ability to work productively and may cause problems in your personal life.
- Depression. In the early stages, you may feel mildly sad and occasionally hopeless, and you may experience feelings of guilt and worthlessness as a result. At its worst, you may feel trapped and severely depressed and think the world would be better off without you. (If your depression is to this point, you should seek professional help immediately.)
- Anger. At first, this may present as interpersonal tension and irritability. In the latter stages, this may turn into angry outbursts and serious arguments at home and in the workplace. (If anger gets to the point where it turns to thoughts or acts of violence toward family or coworkers, seek immediate professional assistance.)
Solutions to Burnout
As hard as it may be, you must learn to reach out for help. If you are going it alone as a caregiver, you may need to let go of the idea that you can do this alone and ask for help. Your life and the life of your loved one depends on it.
First check out what your community has to offer. Often there are programs put on by community senior centers that older adults can be a part of. Whether it is a dinner or an outing, giving you a break and your senior dependent a time with others can be beneficial for you both.
Family and Friends
After seeing what kinds of programs your community has, call up your friends and family members and let them know about your struggle. If they don’t seem to understand, share this article or other information about caregiver burnout.
Find out who might be able to help. Ask for specific kinds of help. If you need to get out once per week for a day trip somewhere to clear your head, ask for 8 hrs of help every Monday. Let them know exactly what is needed so that they can know exactly how to help.
You can also talk with religious groups in the area who may want to reach out to your loved one and help. If your loved one was involved in a religious group, let the Pastor or Leader know what is going on and that you are in need of help. Your loved one may have friends in a group like this who would be happy to help.
There are also community groups unaffiliated with government or religious organizations that can help you find respite care. One such group in the Triangle area is Project C.A.R.E. (Caregiver Alternatives to Running on Empty). It is the only state funded support program for individuals who directly care for loved ones with Alzheimer’s disease or related dementias.
“Project C.A.R.E. offers persons with dementia and their caregivers counseling, care consultation, dementia-specific information, caregiver assessments, caregiver education, respite care, and connections to social support networks. They also help to connect families with available community resources in an attempt to meet unmet needs of family caregivers including local support groups, supportive services, entitlement programs and other community resources.”
Elder Day Care
NC also has Adult Day Services, an organized program in a community group setting that promotes social, physical and emotional well being of elder adults. “These programs offer a variety of activities designed to meet the needs and interests of each older adult who receives care. Costs to consumers vary as there is limited funding for adult day care from state and federal sources.”
Time to Stop
If you reach a point where you realize that you can no longer physically or emotionally care for your loved one well, it is time to look at somewhere they can get the help they need AND so that you can get the break that you need.
- Assisted Living provides care for the day to day and helps with medicine distribution and other medical issues. Generally, there is only one nurse for an entire assisted living center.
- Nursing homes have more access to RN’s and other types of medical professionals when needed. There is always a nurse on call in this type of environment.
- Continuing Care Retirement Communities are generally a high end solution in which a person pays a large fee to buy-in to the community plus the cost of their home. As they begin to need care, it is provided so that you age in place and do not need to move away as more care is needed.
In NC, you can start with a look at the Area Agencies on Aging located across the state. You can also talk with community groups and others who may be struggling or have gone through a similar experience so that you better understand what you need and how to find help.
Don’t struggle through this on your own. Taking care of a loved one in need of help for their day to day activities of life can be more draining than you realize.
As Life Fades
At Renaissance Funeral Home, we want to provide solutions for the process of dying by offering care and help during the difficult moments that families and caregivers face when caring for a family member. We know how difficult it can be. We can help plan for the types of care needed as they eventually slowly fade from life into death.
Contact us for any funeral needs or direction in pre-planning for yours or another’s funeral. We want to be a community resource and are happy to help and share our experiences with death in order to benefit your journey.