Caregivers encounter many challenges in supporting their loved one with ALS, some of which include the new experience of understanding how to provide assistance for physical limitations affecting mobility, swallowing, speaking, and breathing. Cognitive issues, including a diagnosis of frontotemporal dementia, present an extra layer of difficulty in providing care.
Caregiving Tips and Hints
Coping With Burnout
Being a caregiver of someone with ALS is a very important role. It usually involves a number of tasks that can be very time consuming, and can require a great deal of effort. If we do not learn to recognize that certain tasks and expectations can take their toll on us, regardless of what role(s) we play in life, we may find ourselves headed down the path of burnout. Burnout can be defined as exhaustion of physical or emotional strength or motivation, usually as a result of prolonged stress.
A key to guarding against burnout is to be willing to take a close look at our lives, in order to become more conscious of our thoughts and behaviors. Some practical questions to ask ourselves are, "What causes burnout?", "How do I know if I am burning out?" and "What can I do to prevent burnout?". We will attempt to answer these three very important questions...
Being a family caregiver, while a fulfilling role, can consume a great deal of physical, mental and emotional energy. Consequently, respite care is very important because it gives family caregivers of persons with ALS an opportunity to create a plan of care for themselves; something a caregiver often overlooks.
Respite care simply means an interval of rest or relief. Respite care gives you, the family caregiver, an opportunity to take a much-needed break from the daily care that you provide for your loved one. A period of respite may be a few hours or a few days at a time, depending on what is decided between you and the care recipient. There are a number of ways you can spend your "time off" during your respite. Here are just a few examples:
- Go to the movies
- Read a book at a nearby park
- Go on a short vacation
- Have someone else care for your loved one while you retreat to another part of the house and watch TV, read a book, or take a nap
- Attend a caregiving support group
- Sit in the sun
- Take a walk
- Treat yourself to lunch at a restaurant with a friend
- Get a massage / facial / manicure… do something for you
It is important to have a plan for your own self care because doing so can enhance the quality of life for you and the quality of life of your loved one. The more relaxed and fulfilled you feel, the more easily you will be able to provide the necessary care to your loved one. It is also possible that your loved one will appreciate a respite from the normal routine of care as well!
The lack of a conscious plan of self-care can result in caregiver burnout. How do you know if you are burning out? Some symptoms of caregiver burnout are:
- Social withdrawal
- Inability to concentrate or relax
- Inability to sleep
- Lack of appetite
Caregiver burnout makes the task of caregiving very difficult, if not impossible. It can lead to resentment on the part of the caregiver, and even illness. It is your responsibility as a caregiver to care for yourself as well as the person you are caring for.
Respite care is one tool you can use to help yourself avoid caregiver burnout.
Lots a Helping Hands is a simple online tool that helps organize the community of people who want to help. It’s a network of volunteers from the community – friends, neighbors, members of community organizations like your church, or other service groups – that provide help for the person with ALS and his or her family, and often give the caregiver a break from their day-to-day responsibilities.