ALS caregiver support
Anyone can be a caregiver and their duties are unique to every situation. Caregiving is done out of love, devotion, and responsibility to the person with ALS. While it can be personally rewarding, it can also extract a huge emotional toll on the caregiver.
Caregiver rights
Remember, as a caregiver, your health and well-being are just as important as those of the person you’re caring for. Review your rights as a reminder that your needs matter as much as those of the person you’re caring for.
I have the Right to:
- Take care of myself. This is not an act of selfishness. It will give me the capacity of taking better care of my loved one.
- Seek help from others even though my loved one may object. I recognize the limits of my own endurance and strength.
- Maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things myself.
- Get angry, be depressed, and express other difficult feelings occasionally.
- Reject any attempt by my loved one (consciously or subconsciously) to manipulate me through guilt, anger, or depression.
- Receive consideration, affection, forgiveness, and acceptance for what I do for my loved one for as long as I offer these qualities in return.
- Take pride in what I am accomplishing and to applaud the courage it sometimes takes to meet the needs of my loved one.
- Protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full-time help.
- Expect and demand that as new strides are made in finding resources, similar strides will be made toward aiding and supporting caregivers.
– List from Family Caregiver Alliance Organization
