WHERE DID MICHAEL GO? Caring for a spouse....

I follow Michael Whelan on X. His wife has Parkinson's Dementia. He posted this today. He has written many books & is currently writing one about his beloved wife Rebecca and their journey. He is also talking to people who may do a documentary. This is what it feels like for some who care for their spouse with dementia.

WHERE DID MICHAEL GO?

By Michael Whelan

My silence isn’t absence. It’s oxygen. It’s me trying to stay alive as long as Rebecca does. Lately, I’ve crashed and burned—hard. And part of what finally took me down is something people rarely talk about, or don’t want to hear: how brutally mean people with Parkinson’s and other neurological diseases can treat their caregiver—especially when that caregiver is their spouse. When the disease moves from the body into the mind, love doesn’t disappear, but it gets buried under anger, paranoia, agitation, and fear. The person you’re trying to save can become the person hurting you the most. The last two weeks have been ugly. Not dramatic. Not cinematic. Just relentless. Being screamed at, fought against, blamed, rejected—hour after hour—by the person you love more than your own life. And knowing, with your whole heart, that it’s the disease talking… but still having to absorb every word, every outburst, every cruel moment with no shield, no relief, no escape. When people ask how caregivers burn out, this is how. Not from lack of love—but from being emotionally beaten down while still expected to be endlessly patient, gentle, and strong. Make that caregiver a husband or wife, and the damage cuts even deeper. You’re losing your partner in real time while being treated like the enemy. I understand now—truly understand—why some spouses leave their Parkinson’s partner. I would never do it. Never. But I understand the breaking point. This is an impossible situation, and pretending otherwise helps no one. Compassion doesn’t mean denying the truth. If I’ve been silent, it’s because I’m trying to survive this. To stay alive as long as Rebecca does. To protect what’s left of my heart while giving everything I have to someone whose illness no longer knows how to give back. I’m not okay. It’s been a brutal stretch. But I’m still here. Still breathing. Still loving. Still fighting.