I took the question to the talented members of Riverstone's "Memory Club" and the upcoming list is what we thought of.
(I am truly the luckiest person in the world. As I sit here typing in Starbucks, one of the lovely barista's just came by to take my cup to give me a free refill).
Many of the answers listed below can be used in context for both support groups of both caregivers and FTD/Dementia patients.
For me, the most valuable thing I learned is number O:
0. Find happiness and purpose in life again.
a. You need to learn to keep adapting to the changes made by dementia.
a. You need to keep a positive attitude and work around all obstacles.
3. A sense of belonging.
a. You are a part of something and feel comfortable with the people and atmosphere.
4. Expressing our experiences to peers in an effort to minimize our problems.
a. Having others that can relate to your life and you to theres.
5. You learn you are not alone.
a. You might be lonely, but your not alone.
6. Learn you can function with your crazy ways.
a. No one is perfect. Live life and enjoy. Get over things fast and move on.
7. Life is not over, we can rebuild our lives.
a. You can have a full and wonderful life. Just different than before.
8. Awareness of Dementia.
a. Be aware and accept the a changes in your life. You can't be happy if you keep fighting for the life you had before Dementia. You need to be aware of yourself and your life to move forward.
9. Get a 2nd opinion, don't necessarily trust every doctor you see because they are a doctor.
Listen to medical opinion, but don't disregard your instincts and don't think twice of seeing someone else when it comes to matters of health and wellness.
10. A friendly, supportive, understanding environment.
a. You can breathe and relax. Better and cheaper than a psychiatrist office.
11. We are like brother/sister.
a. You can develop new close relationships with others that understand you and you them.
12. Learn how to live, not how to die.
a. Get busy living, never give up.
13. Dementia is a not a mental illness. Medications for mental illnesses do not necessarily work with Dementia.
a. Be extremely careful of all medications and there side effects.
b. There are no FDA approved drugs for FTD. The UCSF website has a guide to medicines for FTD.
c. Do not take Aricept for FTD.
You have a progressive terminal illness with no cure.
You're told to make end of life plans. The only thing you can think of when leaving the doctors office is life is that I have Dementia and I'm going to die. You are in shock and many people do not get over it.
To find a FTD support group for caregivers in your area. Check the AFTD Website for the regional coordinators.
For caregivers of other types of Dementia's and if there is no FTD support group in your are, contact your local Alzheimer's Association.
Those diagnosed with FTD should try one of the Dementia Support Groups. They can find out where these are from the Alzheimer's Association. It was nothing short of a life changer in my case.
Remember, you get out of it what you put into it.
It will not be the life you once knew, but it can be a life with happiness and purpose.
I am looking to start a FTD patient support group in Manhattan. The purpose will be to help us find happiness, purpose and to deal better with having FTD. Please contact me if you are interested.