November is National Caregiver's Month

by Adele Marano, LCSW Director of Patient Services, Greater New York Chapter

When someone you love is diagnosed with ALS, the events that follow can result in a wide range of emotions -- from anxiety to feeling overwhelmed. For caregivers, these emotions, combined with the new demands placed on them can lead to a sense of frustration, loneliness, and guilt. In fact, more than 50 million people provide care for an ill, disabled or elderly family member or friend during any given year. A number of these caregivers take on their new responsibility as a full-time job.

Being a caregiver is hard work, involving emotional, financial, social, and nursing skills, often on a 24/7 basis. Many find themselves doing things they could not have previously imagined to ensure their loved one is properly cared for and their needs, both basic and complex, are met. However, when caring for another's needs, it's important to remember one's own needs, for a caregiver's work cannot get done if the caregiver is burned out.

Perseverance is a constant for ALS caregivers. But no matter how difficult the journey, please know that you are never alone. There are approximately 30,000 people living with ALS in the United States today and many times as many caregivers, some part-time, some full-time, some paid, some uncompensated, but regardless, all caregivers must be mindful to care for themselves, as well as the person with ALS in their life.

Here are ten helpful tips that may help caregivers cope:

1. Choose to take charge of your life and don’t let your loved one’s illness or disability always take center stage.

2. Remember to be good to yourself. Love, honor, and value yourself. You’re doing a very hard job and you deserve some quality time, just for you.

3. Watch out for signs of depression, and don’t delay getting professional help when you need it.

Feel free to speak to a Chapter social worker when they're visiting or calling your home. They are there as a resource, not just for the patient, but for caregivers as well. Also call the Chapter office to speak with a trained social worker.

4. When people offer to help, accept the offer and suggest specific things that they can do. This brief respite could allow you to run errands, visit with friends and family, or just relax.

5. Educate yourself about your loved one’s condition. Information is empowering.

Information about ALS can be found on the Chapter website: www.als-ny.org. Also, caregivers should engage with healthcare professionals during medical visits, so you have a better sense of the disease and the toll it's taking on your loved one.

6. There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.

The Chapter has an Assistive Technology Specialist - Ben Lieman - on staff to help you figure out what equipment or augmentative communications device is right for you and the one you care for. Such equipment can help with a variety of daily tasks, from lifting to moving throughout the home, to communicating. Ben can be reached at blieman@als-ny.org or 212.720.3057.

7. Trust your instincts. Most of the time they’ll lead you in the right direction.

8. Grieve for your losses and then allow yourself to dream new dreams.

9. Stand up for your rights as a caregiver and a citizen.

The Chapter has a robust legion of ALS Advocates who work to seek change in government. The ALS Association also hosts National ALS Advocacy Day & Public Policy Conference each year. Become an ALS Advocate.

10. Seek support from other caregivers. There is great strength in knowing you are not alone.

The Chapter offers a number of support groups throughout the region for PALS and caregivers, both in person and on the phone. Many people share your same concerns. Meet others coping with ALS. There is no need to feel alone.

To learn more about these or any of the services the Chapter offers for caregivers, please call (212) 619-1400.