A story of Mother’s Day, dementia and ukuleles

This Mother’s Day was the first time I wasn’t able to speak to my mom or wish her a happy Mother’s Day.

It was sad for me, and difficult to deal with, and all the other things you’d expect it to be. But it wasn’t anything at all for my mom, since I’m pretty sure she didn’t even know it was Mother’s Day.

My mom is suffering from dementia and was locked away in a hospital this Mother’s Day. I say “locked away” because my family and I have very limited contact with her and aren’t able to get much information about what’s happening with her.

She was admitted on an emergency basis a few weeks ago and seems to be stuck there for now. My dad usually gets voice mail when he tries to talk to her caseworker, and a day or two can go by before anyone gets back to him. He says when someone finally calls him back, they’re always apologetic. I’m sure that the people who work there have a lot on their plates and have many families of many patients to speak with, but it’s still hard to spend long periods of time without knowing what’s going on.

My dad goes to see her each visiting day, but visiting hours are only twice a week for 1.5 hours per day.

Is it just me, or does that seem draconian? My mom has been in nursing homes and hospitals before, but we’ve always been able to visit whenever we wanted. Three hours a week isn’t much.

I called to wish her a happy Mother’s Day, but the nurse who answered said that my mom couldn’t talk because she was asleep. She told me my mom spent most of the day spitting out her food to avoid taking the medications they’re trying to give to her.

Wow. Happy Mother’s Day, mom. Sounds like you had a hell of a day.

But the worst part isn’t that she’s locked away in a hospital. It’s that she’s starting to become locked away in her mind. I haven’t yet made the 10-hour journey to see her (I’m the one person in my family who lives several states away), but my dad and brother give me updates when they see her. They throw around heartbreaking phrases like “paranoid” and “not eating much” and “didn’t recognize us.”

I was home visiting shortly before she went to the hospital. I saw my mom have ups and downs, good days and bad days. She went through periods of anger and lashing out, but she also had periods of relative content and calm.

My trusty ukulele, excellent for singing Elvis songs

My trusty ukulele, excellent for singing Elvis songs

I brought my ukulele, and we spent a few minutes one evening singing some of her favorite Elvis songs together. Her face lit up with joy, and I could see her grin as she swayed in time to the music and sang along. I’m not sure she remembered that I was her daughter, but she remembered every word of the songs we sang.

The hospital is “evaluating” her and adjusting her medications. Apparently they’ll release her when they’re done.

I don’t even know what that means.

Dementia isn’t curable, and I’m terribly afraid that “adjusting her medications” is code for making into her a listless zombie so she doesn’t cause trouble.

I hope “evaluation” means that they’re trying to find a balance of medications that will help her live as normally as possible in spite of what’s happening to her mind. I hope the hospital is full of doctors and nurses who specialize in the care of people with dementia. I hope my mom is surrounded by people who will treat her respectfully, even when she’s angry at them and being stubborn and unreasonable.

I hope these things will all my heart. But I don’t know because most of the time she’s kept away from us. And she’s drastically worse now than she was before she went into that hospital.

She’s never been able to abide being told what to do or where to go, and I think this hospital is full of people telling her exactly that, as well-intentioned as they may be. She’s going to be at her best in an environment in which she has some sense (either real or imagined) of control over her own life. And I’m pretty sure this hospital is the opposite of that.

So here’s the real question: what if what’s causing this extreme, extended decline is her environment and not her medications? How can the hospital accurately evaluate her when it’s likely that her being in the hospital is a huge part of her current decline?

Her “evaluation” has been going on for a few weeks now, and it’s unclear when it will end.

I know this is just one of so many sad stories about dementia. And I’m starting to realize that there’s a serious lack of good options for people suffering from dementia, especially in its advanced stages.

So what can I do?

I’m trying to educate myself. I’m reading books and researching forums for advice and support. I see so many people’s stories about parents, spouses, grandparents. Updates on how their loved ones are doing. Questions on how to deal with doctors and nurses, hospital and nursing home rules, legalities. So many sad stories. So many cries for help.

It’s heartbreaking and disheartening.

I try to have hope, but, honestly, things seem pretty bleak right now. I’m afraid my mom’s stubbornness and fierce independence are not going to serve her well as she goes through this. She doesn’t think anything is wrong with her, and she’s angry that she no longer has control over her life.

Please hang on, mom. I’m coming to visit soon.

And I’ll bring my ukulele.

We can sing some more Elvis together, and maybe I’ll see the smile spread across your face again as you flawlessly remember every word of every song you love so much.