Dad has dementia and I'm losing myself
I don't even know where to start. My dad was diagnosed with early-onset Alzheimer's 2 years ago. I'm his primary caregiver. I also have a 14 year old who needs me. I also work full time. I also apparently need to eat and sleep at some point??
Today he didn't recognize me. It was only for a few seconds and then he snapped back and said my name. But those few seconds... I can't describe what that feels like. It's like your whole childhood is being erased in real time.
I'm tired. Not just sleepy tired. Tired in my bones. Tired of being strong. Tired of answering the same questions 15 times a day with a smile on my face because he can't help it and getting frustrated makes me feel like a monster.
I know I need help but I don't even know what kind of help or where to find it. If anyone has been through this, please tell me it gets... I don't know. Not better. Manageable?
Lisa, I'm so sorry. What you're experiencing is one of the hardest things a person can go through, and I need you to hear this: the guilt you feel when you get frustrated? That's proof you're a loving daughter, not a bad one. Frustration is a NORMAL response to an incredibly difficult situation.
Some concrete resources:
- The Alzheimer's Association helpline: 1-800-272-3900 (24/7, free)
- Look into your local Area Agency on Aging for respite care options
- Adult day programs can give you 6-8 hours of relief while providing your dad social stimulation
- Many communities have caregiver support groups — both in-person and virtual
Also, please ask your dad's neurologist about the full spectrum of support services available. Many families don't know what they're entitled to.
Lisa, I don't have experience with dementia caregiving specifically, but I know what burnout feels like and what you're describing is textbook. The bone-tired thing. The losing yourself. I was there 2 years ago and it scared the hell out of me.
You are not a monster for feeling frustrated. You are a human being in an impossible situation carrying more than any one person should carry alone. Please reach out to those resources Diane mentioned. You cannot do this alone and you shouldn't have to.
Lisa I dont have answers but I want you to know you're not alone in here. that moment when they don't recognize you — my grandmother had dementia and I saw my mom go through exactly what you're describing. it broke something in her.
please get support. not just for him, for YOU. you matter in this equation too even tho it probably doesnt feel like it right now.
Lisa, sending you so much love right now. I know I'm the "tech solutions" person here but some things technology can't fix. What I CAN offer: if you need help navigating insurance stuff, finding local resources, or even just organizing his care schedule using the tools we've talked about, I'm here. DM me anytime.
Also — the fact that you reached out here? That took courage. That's the first step.