This is a section of the blog that I hope will grow. For now, I am listing the organizations that helped us in tremendous ways and taking the opportunity to thank them.
Please feel free to contact me with additional resources-organizations, blogs, …- that you believe should be posted.
ALS Association– Information about the disease and finding local resources for support and assistance. Ben worked with the team based at Mount Sinai Beth Israel.
Mount Sinai Medical Center’s Visiting Doctors Program– This unique program offered regular medical care and support services (through VNS) to our home. As Ben became homebound, this program provided much compassion, comfort and relief, for which I am, and will always be, grateful. This is a Manhattan-based program, but talk to your doctors to see what is available in your area.
Visiting Nurse Service– This is a link to the NY area network, because that is where we were, but look for your local chapters. Your doctors can provide referrals and other information. Through VNS, Ben received a number of services, including physical therapy, social work and speech therapy. I attended a support group for people who lost spouses run by VNS and I continue to be in touch with the wonderful people in this group.
The US Department of Veterans Affairs Veterans Health Administration – My dad received such wonderful care there. He spent his last months at the hospice in Northport, Long Island, NY, and I cannot say enough wonderful things about the staff there.
The 92nd Street Y, NYC– . Back in the early 90s, I attended a support group for people who lost parents and found it helpful. I recently participated in a support group for people who lost spouses and also found it extremely valuable. I am grateful to continue to be in touch with the beautiful people from this group.
National Family Caregiver Support Program– Learn more and sign the petition to help get support for family caregivers.