Following is a guest post I previously wrote for Alzheimer’s Reading Room.
Wham! You got the big news, a spouse, parent, loved one, friend, maybe even your Alzheimer’s diagnosis. You were just going about your life, and now it’s taken a 180 degree turn. To describe it as overwhelming would be an understatement. It’s easy to enter denial or become frozen with shock. While there is little that can be done for that beyond a little time, there is some comfort knowing that you’re not alone, you’re not the first, and you won’t be the last.
Information! Where do you ask questions? What questions do you ask?
Where do you ask questions?
Where you turn for help largely depends on the help you need. The biggest initial problem may be you don’t know what help you’ll need, but we’ll get to that in a moment. For now, you’ll probably want to know more about the disease, caregiving, financial implications, long-term care, etc. Those subjects are all daunting to the novice.
I could recommend specific resources for each, but for the person first learning of the diagnosis, general information on all subjects is most helpful. For this, it’s hard to beat your local Area Agency on Aging (AAA). These agencies support elders within a set community. Their funds come largely from the federal government, authorized by the Older American’s Act (OAA). The OAA funds go to promote healthy aging, help people understand and apply for programs, family caregiver support, etc. What this means is within your local Area Agency on Aging there are trained people ready to help you with a myriad of questions, but more importantly, they can assess your exact situation and refer you to the right people in your community or state.
My next recommendation is the Alzheimer’s Association itself. Makes sense, doesn’t it? They have an office in every state and they want to help. They hold the professionals, they lobby, and they advocate. You can find both your Area Agency on Aging and your local chapter of the Alzheimer’s Association by visiting ElderGuru’s Resources by State page.
The financial implications may require the assistance of an attorney; however, this is impossible to advise without knowing an individual’s specific disease situation, care needs and financial situation. That being said, for people that can afford them, hiring a private care manager is an option, a Licensed Social Worker or Registered Nurse that helps individuals and families navigate the process.
What questions do you ask?
The only way to determine this is to talk with people, read, research and self-educate. You’ll need to hear what other people are doing or have done. You should consider connecting with a support group, the Alzheimer’s Association will have a list. There is a large selection of books available on the subject. You can also do what you’re doing now; visit web sites like Alzheimer’s Reading Room, ElderGuru and others. The best thing about this process is that you find the answer to the question before you knew you should ask it.
I highly recommend support groups, however. I’ve organized and led them. Many people are too private and uninterested in discussing their personal thoughts and emotions with strangers. These people miss out on a valuable exchange of thoughts and ideas. They miss the opportunity to make valuable and lasting friendships. Don’t try to do this alone.