Any parents caring for adult children? Let's share

My heart goes out to you, I’m 71 and my daughter is 35 and has Down syndrome. I just recently got on Med wavier through APD and they are helping me find help at Adult Day Center and Companion Support.

@ess77
I can relate to this. My son is 45, had a TBI with craniectomy 3 years ago. He now lives with me because his wife left him. He had a stroke during the accident & has no use of left arm @ can now walk with a brace and cane. He is angry , has frontal lobe damage so I am continually dealing with outbursts and emotional abuse. It is very difficult. I spend most of my spare time crying and praying in my closet. He does not qualify for Medicaid so has limited disability. His divorce is not final he has 2 children age 8 and 14 that live 5 hours away. Is there a support system anywhere that can help?

@mlhaeger You are in a very tough and sad situation! You are responsible for total care as far as meals, laundry, trips to and from doctors, everything except personal care? Have you contacted the Area Agency on Aging in your town? I know your son isn’t “ageing” but they may know of an agency that could assist you with your son. And they may be able to help you find someone to talk to, like a therapist.
Do you have anyone who helps you and your son now? Do you have any family?

@becsbuddy Thank you for your kind reply. I have checked with the Brain Alliance & nothing will work due to the fact that he wants to move back to Omaha where his kids are eventually . I have no idea how this will work because he needs a lot of help. Anyway.. thank you for your advice. I have a daughter near me who refuses to help her brother. I am just trying to do all I can to help & keep this family together.

@mlhaeger I understand when you say that you can’t get help where you are and your son wants to return to Omaha. Do you live in Nebraska? Can you contact his state or federal legislators for suggestions or help? Check what help Omaha has for the disabled like assisted living. (My husband just helped a friend with multiple sclerosis move into assisted-living and it’s working well). You can also contact social workers who are great at knowing what resources are available. Google “social workers for the disabled in X town”. Start there. I know he wants to move to Omaha, but you need some help and information for yourself!
https://connect.mayoclinic.org/comment/1624166/ This member has a good suggestion. Keep looking and I’ll try also!

@becsbuddy also try your local area office of on aging if one exists where you are. AARP may have helpful information. I feel for you you’re doing your best but it can be a lonely road. Some assisted living facilities offer respite care to help the caregiver be able to take a break.

@becsbuddy Thank you. I will try your suggestions. He currently lives with me in Raymore Missouri, Kansas City area. So he needs to establish residency in Nebraska again. He is going through the divorce which is not final yet, so he sort of needs to know the out come of that concerning his children, marital assets, etc. before he can apply for anything in another state. Another tough hurdle is he will be dropped from his wife’s insurance plan when the divorce is final. He does have Medicare but will need supplemental insurance. He is slightly over the limit in Missouri & Nebraska to qualify for Medicaid. His disability income is not enough to sustain him. SO lots of hurdles still.

@ess77, what a great idea. I moved your post as well as the replies from @mlhaeger and @linda2910 into a new discussion group. See here:

- Any parents caring for adult children? Let's share https://connect.mayoclinic.org/discussion/any-parents-caring-for-adult-children-lets-share/

Let's use this space to share tips, get support for the tough times and to connect.

@ess77, would you like to share more about your son? How are doing today?

@ess77 I understand. I care for my 35 year old daughter with Cerebral Palsy and Epilepsy. I’m 67, starting to have my own health challenges, and worry how much longer I can do this. I welcome a group for us.

Not sure if this is relevant for you, but my best tip is this: Moments when my daughter is frustrated with her difficult life and argues with me, I take a deep breath and remember I am the adult in the room. I let her vent. I do my best to not get triggered by her words. I know she loves me, appreciates my help, and is overwhelmed. She needs me to just listen now, and help problem solve later. It’s hard for me to keep my cool, but easier than engaging in a battle that ends in more pain for both of us.