Connect
← Return to Caregivers: Early Onset Alzheimer's, diagnosis age 19 to 65
Discussion
Caregivers: Early Onset Alzheimer's, diagnosis age 19 to 65
Caregivers: Dementia | Last Active: Oct 25 4:13pm | Replies (45)Comment receiving replies
@laughsloudly @gail60, I'm glad you've connected. I'm wondering what tips or tools your families have found to help with the challenges of young dementia. What challenges have you faced and what adjustments helped to adapt?
Replies to "@laughsloudly @gail60, I'm glad you've connected. I'm wondering what tips or tools your families have found..."
Having a support system is most important. Friends and family that can help when needed. Most of them don't truly understand how impactful this is to our lives, but they are usually willing to help, so I think it's important to ask for help when I need it.
In addition, Ashley Varner at Emory runs a virtual caregiver support group for those with young onset dementia that I've been to a few times, which is really helpful. It's the third Tuesday of each month at 6:30pm and you can reach out to Ashley.elizabeth.varner@emory.edu for more info.
I've also found a couple of Facebook groups that are helpful: Early-onset/Young Alzheimer's Female Spouses Caregiver Support Group and Spouses of those with Early Onset Alzheimer's Disease.
For kids, there is a great group called Lorenzo's House - https://lorenzoshouse.org/
If anyone has any other resources that have helped you, please let me know!
Connect
Hi Colleen,
I have learned so much and continue to learn every day. Here are my initial thoughts:
Generally, if it is early enough in the disease process, make sure you have all the hard conversations. Finances, Insurance, Legal - Will, POA, Health Care Surrogate, Advance Directives, Care expectations, Funeral planning, who will take the kids & pets if you are both incapacitated. Then discuss the Bucket list stuff. There will be no "Golden Years" - do it now. Record their voice and messages for the kids, especially for milestones like weddings and graduations.
Next, I would downsize and simplify. Say "No" a lot. But also say "Yes" as you are able. I would also let go of any preconcieved notions of who will help, and who will go running in the opposite direction. Expect that people wll say some really, really stupid things. They have no way of knowing what they don't know. And, at this point, I am grateful they have been spared the burden of the knowledge gained on this journey. Find your support and educate yourself about all things having to do with dementia.
Lastly, grant yourself and everyone around you Grace & Space, to feel your feelings; even to be in denial or to have an experience that isn't rooted in reality. One lady said the Improv skill of "Yes, and..." works well. This is a Family Diagnosis, no one comes out unchanged. Ask for what you need.
I say these few things in hopes of helping someone else but there is much more to know.