Boston

Last week I was stalking Kane’s Donuts. If you follow me on Instagram, it was quite easy to see.

Years ago, my cousin had told me about how good these donuts were and I never forgot.

When I heard they were opening in Boston last week, in the building where I was working in no less, I decided to seek them out.

My project ended the same day they opened. But I got a dozen donuts so I could try them myself and share as well. Their slogan is “Donuts are love.” Remember this.

Love isn’t a state of perfect caring. It is an active noun like struggle. To love someone is to strive to accept that person exactly the way he or she is, right here and now. ~ Fred Rogers

Also last week, I learned that my father has Alzheimer’s. As an NBC News article says, it’s hard to get a diagnosis for Alzheimer’s.

More than half a million Americans will develop Alzheimer’s disease this year, but as many as half will never be told their diagnosis, according to a new report.

Doctors are reluctant to give the bad news, are afraid of the reaction, or fear they won’t be believed, the Alzheimer’s Association says. But Alzheimer’s patients and their caregivers say they want to know.

I’ve written about my father on my blog many times before. I perfected my chocolate birthday cake for his 79th birthday.  He and I did a tour of a rum distillery. I blogged his story of when he met Jalen Rose’s father Jimmy Walker on the basketball court back in the day. My Dad has so many stories. I’m so lucky to be his daughter.

I’ve been conflicted about whether to write about what my family is going through. I’m still not sure if it’s the right thing to do. I hope this isn’t a mistake. But for me, “writing it out” is therapeutic. My father has been so supportive of my writing and creative life. Even more so over the past couple of years.

My father is in denial and says nothing is wrong. Over the past five months, so many things have gone wrong. Horribly, horribly wrong. My mother and I could not ignore them any longer. Safety becomes an issue and denial is not an option. But it all happened so fast. One thing after another. We were not prepared. It is so hard. My heart is breaking.

My father will turn 83 soon. He played basketball twice a week until he was 79 years old. He was and in some ways still is the picture of health. He injured his shoulder and had to stop playing basketball. That changed everything.

This — Alzheimer’s, was not supposed to happen to him. Not to my father. He recites poetry from memory and has a story for every occasion. My father is special. This happens to other people. But each of us is “other people” to everyone else. Everyone is special.

The details of all that happened are personal and don’t really matter for the big picture. For everyone who develops Alzheimer’s, I imagine there will be similarities, but the exact details will be different. I’m trying to learn more about this disease, but it’s a steep learning curve and I know that to a certain extent I must still be in shock.

I’ve been a fan of B. Smith for a long time. When I learned that she had early onset Alzheimer’s I was stunned.

Strangely enough, when Smith went missing in November, it was around the time that things started happening with my father. She is becoming more public with her diagnosis and speaking out about Alzheimer’s. I had no idea that it was such a big issue for African Americans. There needs to be more diversity in clinical trials, according to a BusinessWire article.

Although older African Americans are twice as likely to have Alzheimer’s disease as non-Hispanic whites, diagnosis and treatment are more likely to be delayed. In addition, Applied Clinical Trials reports African American participation in clinical trials of potential Alzheimer’s disease treatments has declined to only two percent. Despite an increasingly ethnically diverse US population, African Americans, Hispanics, and other minorities are under-represented in medical research. As a study published in Alzheimer Disease and Associated Disorders found, over 95 percent of subjects in a typical Alzheimer’s disease clinical trial are white.

It seems that the only way to deal with a big societal problem is for the people who are dealing with it to go public. Today I saw Angelina Jolie’s piece in the New York Times about her latest surgery and all the health issues and decisions she continues to go through. She is so brave and I admire her for it. I decided to follow in her footsteps and write here today.

As I’ve been helping my parents over the last several months, I’ve had to take time from work. The article that I wrote for The Atlantic about the Family and Medical Leave Act back in November has been on my mind and especially today. One of the issues is that most family leave is unpaid.

Today I read that Boston may soon have an ordinance for eligible city employees to receive paid parental leave. What a huge and wonderful first step!

But when I think of paid family leave, it should not only be for parents. Not everyone is a parent. I don’t have children, but I still have a family. The work I’ve missed was unpaid and I needed the money. But priorities. I do contract work and this type of legislation never helps those in my work situation. We are not “true employees” receiving benefits.

However, I hope that those otherwise eligible Boston city workers who take time off to help family can be paid regardless of parental status. Should an adult child’s time spent helping an elderly parent be deemed less important than the time parents spend bonding with their newborn? Aren’t they just opposite sides of the same coin?

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Maybe my writing this piece will help someone who is seeing signs in a parent or other loved one, but is unsure about what is happening and about what to do. I don’t have all or even most of the answers, but there is help. Me and my mother have been reaching out to family and friends, different organizations, doctors, nurses, social workers, and more. You name it. Keep reaching out and asking questions. Push for answers. Stay as organized as you can. Take time for yourself. Push for more answers. Appreciate the small victories.

My father has a sweet tooth. When I visited him last week, I brought him some of these donuts. I have never seen his face light up with such pure joy than at the sight of them. Maybe donuts are love.