For CaregiversCaregivers

Coping with the diagnosis of ALS is complicated. Facing changes in independence may lead to anger, sadness, grief, and frustration which makes it all the more important that caregivers not only get help to aide in the daily routine of care but also in the coping process. It can be difficult for people to accept the need for assistance in activities of daily life, even though assistance can ease daily tasks and hardships and alleviate stress. 

While there are outside services that provide caregivers for a fee, the largest source of long-term care services in the U.S. are unpaid family caregivers. The intricate relationship between a family caregiver and the patient requires the caregiver to manage assisting with daily tasks in addition to coping with the diagnosis. It is common for family caregivers to set aside their own feelings and first take care of the family member in need. However, it is important for caregivers to cope with the diagnosis first so they are able to remain strong and supportive for his or her family member.   

The following steps will help you learn to cope with not only the disease, but your new role as a caregiver.  

Learn about ALS - Seek out any and all information and become an expert. Staying informed helps you understand what is happening and what will happen so that you can be physically, mentally, and emotionally prepared for yourself and your loved one.

Express your emotions - Caregivers feel an array of emotions that change almost daily. Many emotions are normal, and it is important to express them, whether it’s through dialogue, writing, or even exercising. You should never feel guilty or ashamed of your emotions.   

Know your resources - Ask your Florida Chapter Care Services Care Manager about support groups for both patient and caregiver. If friends and/or family members offer help, accept their offers. Don’t be afraid to ask for help.

Stay on track with your own life - Keeping a balance in your own life and avoiding neglect of the simple things (i.e. a regular hair cut, personal doctor appointments, and sleep) may help you avoid suffering depression or anxiety.

Additional Resources:

Caregiving - When A Loved One Has ALS

Caregiver Action Network

Caregiving.org

Caregiver Respite Resources  

Caregiver Bill of Rights