Q: I am caring for my father and mother. We are afraid he has Alzheimer's disease. I know so little about this. What information is out there to help us?
A: I have heard this particular scenario a lot recently. Many families and caregivers are reaching out for help when their loved one has Alzheimer's or any form of dementia. Alzheimer's disease is a form of dementia that affects how the brain functions. Plaque builds up in the brain and blocks how the brain communicates. This creates difficulties in day-to-day functioning for the person. The disease does not have a predicable progression. Some days are better than others; sometimes it affects how an individual behaves; sometimes it makes walking and moving difficult; sometimes it makes speech difficult; and sometimes it does all of that and more.
There are stages of this disease. I really don't want to sound like I know a lot about this disease because I don't. The absolute best resource is the Alzheimer's Association. This is a national organization that is dedicated to providing resources for all those affected by this disease. The local chapter is in Williamsville, but offers programs in our neck of the woods, as well.
In fact, they are having a very interesting "Dementia Care Symposium" on Friday, April 11, from 8 a.m. to 4 p.m. at the Millennium Hotel at 2040 Walden Ave., Cheektowaga. This event is a wonderful opportunity to learn about this disease, and how to cope with it everyday. This symposium is especially exciting because it has two tracks - one for family caregivers and one for health care professionals. The program has some interesting speakers on the science of Alzheimer's and coping with Alzheimer's. I am really pleased with the two tracks offered. This offers us each - professionals and families/caregivers - the opportunity to learn what we need to know to better help those with whom we work.
The family/caregivers track has topics like, "How to Find the Services You Need," "Managing Caregiver Stress," "Preparing for Important Healthcare Decisions" and "Purposeful Activities for the Memory-Impaired." These are topics that I know I have gotten lots of questions on and are probably things you are thinking about yourself.
This program has a registration deadline of April 4, so if you are interested, call today. The cost for family caregivers is $35. The contact information is 1-800-272-3900 or www.alz.org/wny. The website allows you to register right there. If you call, they answer any questions you may have.
Senior Life Matters
There are also some local resources your have right here.
The Alzheimer's Caregiver Support Groups that meets locally are always available to you. One group meets at the JAMA building at 15 S. Main St., on the second floor on the second Tuesday of every month at 1 p.m. The second group is an evening group that meets at the Fluvanna Community Church on the third Thursday of each month at 5:30 p.m. The social worker who facilitates these groups is Maggie Irwin, and she can be reached at 483-5448.
Chautauqua Adult Day Care and Tanglewood Manor/Memory Gardens also provide specialized care for those with Alzheimer's.
I would highly recommend that you try to attend this educational care conference. The registration number is 1-800-272-3900.
I have been to many of their programs over the years and always walk away feeling like I learned a lot. There will also be other agencies there for you to reach out to. You will be given information about the progression of the disease as well as ways of helping you and your family cope with this diagnosis.
The questions you have asked about resources available are much the same as when one is diagnosed with cancer. "I have so many questions, I don't know where to begin." The Alzheimer's Association should be one of your first stops. This organization is dedicated to helping you in many different ways.
This training could be a wonderful opportunity to begin this learning process.
Your situation today is different than it was a month ago and will be different again in another month. Begin reaching out to resources like the Alzheimer's Association for many of your answers. Home care agencies, Office for the Aging and professionals in the area will also be of help to you. So don't stop answering questions.