Advice for Caregivers: Accepting Help By Toby Tider, MSW Having worked with over 100 families living with ALS, I have come to believe that opening yourself up to accepting help is one of the most important strategies a family can use while coping with the diagnosis of ALS. Often, the emotional and psychological pain that accompanies this disease is not acknowledged by those around us. Both patients and caregivers experience sadness and suffering due to the multiple losses in their lives. The patient loses an established identity as a worker, the use of his or her physical body and future dreams, to name just a few areas of loss. But caregivers also experience deep personal loss as their long time relationships with spouses, parents, children, or siblings change. In addition, they are taxed by multiple new tasks that have become their responsibility. Because of these realities, accepting help becomes essential to people living with ALS. Help can take many forms. I hope you will consider using some or all of these in the future. First, you need to help yourself. Ask for support from a social worker or a psychologist who can assist the patient, the caregiver, and even the family as a whole to stabilize their lives after the shock of the diagnosis of ALS. These professionals can help the family find ways to move forward productively. Second, formally organize family and friends who offer assistance. If you have been a "giver" in life, a person who offered assistance when others were in need, it may be particularly difficult to be on the receiving end of help now -- especially when offers are non-specific. People want to do something, but are unsure what will actually offer relief. Writing out a list of tasks, and then identifying which helpers are most capable of handling those tasks, can be very effective. The list could include shopping for groceries, being a liaison to the financial planner, researching the purchase of a handicapped van, driving to a doctor’s appointments or car-pooling the kids to after school activities. With an organized system, caregivers include shopping for groceries, being a liaison to the financial planner, researching the purchase of a handicapped van, driving to a doctor’s appointments or car-pooling the kids to after school activities. With an organized system, caregivers can be freed to do other tasks or to have a bit of spare time to take care of themselves. Third, reach out to your religious or civic community. This can be a wonderful source of assistance if you are willing to allow others into your life. Sometimes this means accepting help from strangers, and initially this can be a challenge. However, when a new person enters the life of someone who is in need, I always feel the connection has been directed through a higher order. Over the years I have heard many stories about the comfort that a stranger brought to a family, and always it was without any expectation of repayment. My favorite story came from a Columbia ALS patient who was 45 years old and bed bound. As his sister sat having her nails done one day, she updated her manicurist on her brother's progress. At the end of the story, a woman sitting next to her apologized for having eavesdropped, but explained that she was a physical therapist, and asked if the family might allow her to visit. The patient’s sister accepted the offer. When the physical therapist met the patient the first time, she showed her credentials, they talked for a while and then she offered to come back and give him a massage. Having hit it off with his guest, the patient accepted and a wonderful friendship grew between them. I will never forget my surprise when I heard many months later that this one-time stranger had continued to visit weekly and had given the patient a free massage at every visit. Often, accepting help is difficult. No one wants to feel beholden to other people or unable to repay their generosity, but acts of kindness are an important part of living a good life. In addition, setting a positive example extends and heightens the value of any action. But remember, until the potential recipient agrees to accept help none of this is possible. So please, accept help.