Alzheimer’s

On my Father’s Birthday + Zun Lee’s Father Figure Project

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Zun Lee's Father Figure Project

Yesterday I read an article on PetaPixel and learned about street photographer and physician Zun Lee. His work is tender and beautiful examining the complexity of what it means to be a father. The way he describes his craft and style is far better than I can do, so here is a snippet from his website.

As a clinician, I’m trained to work with people at their most vulnerable who grant me permission to invade their privacy. As a result, I have always had an intense interest in the dynamics of trust and control when it comes to that interaction. At best, it can reveal a unique connection, a kind of truth that would otherwise not be foregrounded.

When a human being connects with another and – even if for a split second – relinquishes a certain level of control, it is fascinating that complete strangers can share an alternate truth about themselves that was hidden not only to others, but perhaps even to themselves. It is in these moments that individual emotion transcends the personal realm and gains universally understood context.

Learning about his Father Figure project struck a deep chord with me as I read about it yesterday and looked at all the pictures. Today is my father’s 84 birthday. As I’ve mentioned before, my father has Alzheimer’s and it is absolutely heartbreaking. He still knows who I am, but is very confused most of the time and our immediate family is shaken to the core.

We do the best we can and focus on the time that we still have with him. I am so grateful for my father. The older I get, the more I see how lucky I was to get him as my Dad.

The timing of seeing this Father Figure project and trying to be a good daughter, especially on a day that was always important to him and our family has made me even more emotional. I was in CVS last night and saw a father and daughter out shopping together. I had a pang of sadness, then remembered that I had that. At least I had it.

Lee’s project focuses on photographs that break the cruel stereotype of the absent and uncaring black father and instead shows the strong and loving bonds between black men and their children.

Growing up I never thought of myself as a Daddy’s girl. Me and my father have definitely had our moments of major disagreements. We still do. Plus I’m very close with my mother. But a few years ago, one of my parents’ friends referred to me as a Daddy’s girl. I started thinking about it and maybe I am. For the time that I have left with him, I will relish the term.

I’m getting ready to bake my father’s favorite birthday cake and will have dinner with him, my Mom and my brother later today. Luckily, he still likes my baking! Though when I bake the cake now, I just do one layer. We all are watching our weight!

I find that what saves us all, is keeping a sense of humor and being grateful for so many wonderful memories of my childhood. Even as my father is losing his memories bit by bit.

If you have a few minutes, I hope you’ll watch the video about Zun Lee. He reveals his own family struggles and you can see more of his amazing work.

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Screenshot: Vimeo

Recently Read: Inside Alzheimer’s

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Inside Alzheimer'sSome topics you hope to never need to know too much about. They are difficult and sad. Most of us are juggling very busy lives in the best of times.

But bad luck, accidents, political upheaval, war and disease can burst in without a warning and disrupt what order and peace we may have been able to achieve. So many bad things can happen that I still feel blessed and thankful to have led a relatively easy and comfortable life.

But this past winter, amid work chaos and struggling to get around in the snow, my father was diagnosed with Alzheimer’s. It has been a very difficult adjustment for me and my family. We continue to adjust and adapt.

It’s a process and a journey. Definitely not one that any of us would have chosen or predicted. Especially since my brother, my only sibling, has developmental delay and other physical issues.

There is not a lot of solace with this illness. Alzheimer’s is a cruel disease. I’ve struggled to learn how to continue communicating with my Dad. I feel helpless and lost sometimes.

He is in very early stages and still knows who I am and is sometimes very much himself. Except for not really. We can’t talk quite the same way we used to and I have to be careful to try and not upset him.

I was looking for books to read and found Inside Alzheimer’s by Nancy Pearce. It is a beautifully written, inspiring and uplifting book. I highly recommend it for anyone looking for answers about dealing with a loved one who has dementia. The tagline of the book is How to Hear and Honor Connections with a Person who has Dementia. Below is an excerpt from her website.

There is a person inside Alzheimer’s and any of the other dementias—a person, just like the rest of us. The person, no matter how progressed the dementia, maintains the ability to feel the joy and satisfaction that comes from being in the rhythm of human connection with others. The disease does, however, diminish that person’s ability to reach out in familiar ways which poses challenges for those of us who want to stay connected.

For over 25 years, I interacted with persons who have dementia and paid attention—looking hard at each interaction for the ways in which she (or he) had been affected by me, by others, and by the world even as she progressed through the disease. Each person guided me during all of the connections and disconnections toward understanding that connection is not so much about knowing what to do or say as it is about learning the ways in which we can “be with” the person in her world so that we can allow her strengths to emerge. Being in the moment and engaging the person with dementia in her world offers constant surprises and gifts of wisdom, insight and compassion—each of us moves beyond isolation and hopelessness; each of us empowered to move forward, to grow.

When I started reading this book I thought I would feel even worse than I already did, but more informed. Instead, I felt uplifted and confident that there would still be some good times ahead.  I really needed to believe this, because I didn’t know how to cope otherwise.

The author writes about interactions that she has had over the years working with Alzheimer’s patients. She showed a lot of humor and joy along with the difficulty. I so needed to hear this.

Since my father’s diagnosis, we still have many good times together. He still has his deep intelligence, sharp wit and love of good food. Sometimes I feel like he is even more open and loving towards me and my brother now than before. Like a barrier has come down.

The future scares me, so I try not to dwell on it and focus on the good that exists now. The present really is a gift.

On Family: Boston, Politics, Love & Donuts

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Kane's Donuts window BostonLast 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. donuts thru glassAs 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.

honey dipped + plain donutsMy 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.