Caring for someone with dementia presents very unique and difficult challenges. Their loved on could experience: the loss of cognition, memory, judgement, recall, communication, and the ability to carry out basic activities of daily living. This is why it’s very important for dementia caregivers to receive the support they need to reduce their risk of developing chronic illness that could impede their ability to care for their elderly family member.
Often people who are caregiving don’t even identify as a caregiver. In many communities, families take care of their own. If momma gets sick or needs to go to the doctor, someone in the family takes her or makes sure she gets there. This person does not necessarily consider him/herself a caregiver, but rather feels that this is his/her responsibility. If you accept responsibility for providing any level of supervision; hands on care; transportation; and/or medication assistance for a loved one, you are a family caregiver. Studies support that most family caregivers experience high levels of stress (www.aarp.org/caregiving/health/info-2023/report-caregiver-mental-health.html). However, many enjoy caring for their loved ones and wouldn’t have it any other way.
It is possible that the demand for Long Term Services and Supports (LTSS) is going to surpass the number of support services available. That means that the brunt of the responsibility for providing care will rest on the family members.
As a caregiver, you may have become worn out by giving your all to others, day in and day out, and perhaps there is very limited, if any, support left for you. When this happens, you are increasing your risk of developing compassion fatigue. Compassion fatigue, also known as secondary traumatic stress or vicarious trauma, is a health condition that is characterized by deep mental, physical, and emotional exhaustion, and a pronounced change in the helper’s ability to feel empathy for others. Compassion fatigue can prove to be very dangerous if not addressed as early as possible.
Signs of Compassion Fatigue
Below are the most common emotions/symptoms that may be included compassion fatigue:
- Anger
- Grief
- Sadness
- Loneliness
- Guilt
- Resentment
- Feeling Helpless
- Feeling Hopeless
- Feeling overwhelmed
- Feeling Exhausted
- Feeling detached or numb
A few signs in addition to the above that compassion fatigue may be occurring are:
- Reduced empathy or sensitivity
- Difficulty sleeping
- Blaming
- Pessimism
- Insulting others
- Defensiveness
- Irritability
- Headaches
If you are experiencing or displaying any of these feelings or actions, and they begin to impede your ability to enjoy activities and/or complete tasks, such as going to dinner with friends; exercising daily; shopping; going to work, etc., you may be experiencing compassion fatigue. Once you notice the signs, you’ll need to address them immediately.
You might consider taking time off from work (and yes caring for a loved one is work), or hiring a caregiver to watch over your loved one so that you can get the much-needed break and respite. Your mind, body, and spirit are screaming for it. You might consider joining a support group. Join a group of people that has been through what you are going through and is able to offer you tangible support and strategies.
One of the things that helped me when I was emotionally exhausted after working ten years with the aging and disabled population was taking true time far away from work and from anything that reminded me of work. I began to schedule vacation time, even if I did not leave my house. The mindfulness I was able to experience during my away time was priceless. Whatever you do, DO NOT IGNORE your body’s messages. It is a necessity to respond, as no one else is responsible for you but you!
One support that is available is the respite program at the Area Agency on Aging. Each county in the U.S. has a Area Agency on Aging that helps families with respite, education, meals on wheels and so much more. This program may offer supportive services, such as Respite vouchers, so family caregivers can pay for care. When it comes to respite care, it can be provided in your home, or you might consider visiting an assisted living in your area to inquire about doing out-of-home respite at that facility. This will give you an added layer of the type of respite and rest you need and deserve.
For support groups, the Alzheimer’s Association and Leeza’s Care Connection have been extremely helpful to my clients, as they offer in-person and virtual support groups for different types of caregivers, such as African American caregivers; LGBTQIA+ caregivers, spousal caregivers, male caregivers, millennial caregivers, etc. Simply tap into your county by going to www.alz.org for more information. You can access the virtual support groups at Leeza’s Care Connection by going to www.leezascareconnection.org
References
- https://www.aarp.org/caregiving/health/info-2023/report-caregiver-mental-health.html
- https://www.alz.org/alzheimers-dementia/facts-figures
- https://www.cdc.gov/aging/publications/features/supporting-caregivers.htm
ABOUT THE AUTHOR:
Dr. Macie P. Smith is a Licensed Gerontology Social Worker and an award-winning Alzheimer’s and Dementia educator and author with more than 24 years of experience. She provides support for those living with Alzheimer’s, dementia, cognitive impairment, intellectual and developmental disabilities, traumatic brain injury (TBI) and chronic traumatic encephalopathy (CTE) and their families. Dr. Smith is the owner and operator of DTC Group, a Geriatric Care Management organization, and the author of two best sellers A Dementia Caregiver’s Guide to Care and A Dementia Caregiver Called to Action. Dr. Smith has also been a featured panelist at the White House.
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