This is an open letter to the First Lady, Dr. Jill Biden.

Dear Dr. Biden,

I belong to a group of ten women all of whom have one thing in common: we live with beloved husbands who are battling various neuro-degenerative  conditions. None of us are doctors; we are caregivers. We came together to support each other as our loved ones decline.

My group has learned to live with Alzheimer’s, ALS, CTE, Parkinson’s. My husband has Parkinson’s, but you might not recognize his symptoms. Very little of the tremors. Only late at night do they appear slightly. No hallucinations. He’s not ‘fine,” but we manage to stay happy and healthy.

I’m being presumptive in thinking that you might be part of our extended group. We don’t know, but we have seen President Biden change in appearance, in gait, in the way he uses language. If I may, here’s what we are going through. I’ve selected the most obvious differences between the Joe Biden we elected four years ago and the man we see today.

Sami was the first to notice the change in the president’s facial expression. His face is more of a mask, slacker than it used to be. We are used to watching emotions play across the president’s face, but now they aren’t as apparent. My husband’s face goes from slack to animated. I can tell when he gets up how engaged he’ll be throughout the day.

I noticed how the president walks. It’s more of a shuffle than a stride. He doesn’t stand as erect as normal. Three of our group husbands no longer stand erect either. Mine leans to the right with a slight rounding of the shoulders. The right-leaning causes him to be more careful with his balance. We walk a mile up and down hill daily, which is important for his balance and general health. Many times on the downward path, we hold hands. I ask him to balance me when it’s me who is balancing him. I ‘m lucky because he’s good on stairs. Helps because we have three stories in our house.

I’m really lucky because my husband doesn’t often show anger. He knows he’s slipping and seems to accept it better than three friends’ husbands. I was warned that there were triggers to watch for. Many of the women faced challenges when it became obvious that their husbands couldn’t drive any more. Fights and interventions when it was time to give up the car keys.

One day, my husband moved to the passenger door when we were getting ready to run errands. He never drove again, and I never mentioned the change. We moved through that trigger as it my husband knew it was time. He’d already given up the motorcycle when his riding group disbanded. We kept the bike for a couple of years before he decided we should donate it to charity.

My friends who’ve been challenged verbally by husbands who didn’t understand why things were changing. Where they had been polite, they became rude. This lasted for a months to years before it passed. Sometimes it took medication; other times it took patience and love.

I had to make a couple of extremely difficult decisions. I cut ties with former friends who didn’t want to see me unless I came alone. I NEVER leave my husband alone where he can become agitated. I left those friends. The cruelest was a woman I had known for twenty years. I knew her to be kind and caring. I never thought she’d be the one who wanted me to put my husband in a home. I don’t know what was going on in her life, but she has no room in mine.

Had I not had a loving family and a strong support system, I would have found it harder to be the sole caregiver.

So, Dr. Biden. You are not alone. We are with you and hope you and the president can come to a decision that will protect his legacy and his health.