The CACTI Blog: SibSpot - A Sibling's Perspective on Aging

March 3, 2017
Sonoran Center Community Advisory Council Member
Marianne Joey, who was diagnosed with Down Syndrome and his sister as a caregiver.

By Marianne Marts, 2015 - 2017 CAC Member

Thanks to the Sonoran Center for sponsoring me to attend the National Task Group on Intellectual Disabilities and Dementia Practices train the trainer workshop on Fundamentals of Intellectual Disability and Dementia.  As a sibling and guardian to my oldest brother, Joey, who is 57 and diagnosed with Down Syndrome, I plan to pass along the wealth of information and personal experience by collaborating with the Sonoran Center for trainings across the state to inform families and professionals working with aging individuals with ID.  I have been fortunate already to train my brother's current staff with some tidbits learned, and it is proving to be beneficial for the staff and residents. Thank you Sonoran Center for taking the aging issue seriously and doing something about it. 

Being a sibling caregiver can carry many roles - one which is called the sandwich generation. Where we caregive for our sibling at the same time we begin caring for our aging parents.  You will find planning ahead and surrounding yourself with support will help you have a healthier transition.  The old adage that you have to take care of yourself in order to take care of others is true.  Reach out and find resources...don't take no as an answer.  Find someone who will help you keep others accountable, as well as help you relax.  

If you are looking for support in aging and DD, a great place to start is our local Alzheimer's Association Desert Chapter(link is external), which has a great program for caregivers called CarePro to help teach and support family members.  Another great resource if you are a sibling is Sibnet(link is external) or go to the Sibnet Facebook group(link is external) and ask to join (it is a closed group for privacy reasons).  Finally, your local Area Council on Aging (Pima Council on Aging(link is external) in Tucson) is a huge resource as well.  Don't be afraid to ask for help and keep asking until you find what you need.  Persistance is key.  

Joey is an integral part of my life.  He has taught me more than any teacher, training, agency or program ever will.  Even when it is hard to handle the truth and the future, his smile and hugs always brighten the day! Follow our facebook page - Joey's Ups with Downs(link is external) - as we share Joey's life and my own as a co-guardian to show the importance of family/sib roles in the life of a person with a disability.

 

The CACTI Blog features the voices of our interdisciplinary trainees and Community Advisory Council members as they highlight diverse images of people with disabilities and provide community information and advocacy on disability issues. Check Out The CACTI Blog