I imagine that every year you look forward to celebrating your birthday. Even if as we get older we joke about not celebrating our special day or not wanting a big fuss made out of growing a year older, deep down, I’m sure you appreciate receiving well wishes. Birthdays are for celebrating, after all; they mean another year of life was lived and a new one is beginning.

Now imagine that you have no concept or recollection that it is a special day. When people wish you a happy birthday, your response is, “Me? You mean it’s my birthday?! Oh, thank you!” You pretend that you were joking and that you do indeed know it’s your birthday, but you really don’t. Were it not for people calling or visiting to wish you a happy birthday, it would be just another regular day for you.

Even as people celebrate your special day around you, you wonder just how old you are because you can’t remember. Eventually, you give up trying to remember for yourself and ask, “So, how old am I now?” Sixty-nine is the response and again you fake the situation, laughing while saying, “69 of course! I just wanted to see if you knew!” But, you really didn’t know.

This scenario is repeated throughout the day each time someone wishes you a happy birthday. It’s as if a reset button on your brain was pushed each time, causing the scene to play again. Only those around you have seen it before; you are seeing it for the first time, each time it plays.

My father’s birthday is today. He turns sixty-nine years old. This is his repeated scene. This is life with dementia. Happy birthday papi.

Photo: Aih/Flickr

As ironic as it seems, my dad’s dementia and memory loss is strangely helping us to reconnect. My father and I have never been very close – not in the way you normally think of a father-daughter relationship. We had no issues and did have a relationship, just not an emotionally close one.

My father was a typical, old-fashioned, Puerto Rican father. That means that while he was a provider and was there for us as a husband and father, he was never the go-to guy for talking about problems. He did not nurture, play, or goof around. He did provide: he worked hard, provided financially for our family and provided sound, logical advice. That’s who he was.

Because of the type of father he was, it resulted in me knowing I could count on him for things like financial advice, logical solutions, and life lessons, so to speak. I also knew I could not count on him for heart-to-heart talks about feelings or seek emotional support, something us girls often need. For that, I went to my mother.

However, my father was always a storyteller. I do remember hearing many stories about his childhood in Puerto Rico, his family, and music. As such, even with the disease of dementia affecting his mind, he still enjoys telling stories.

These days, my father’s stories may be full of inaccurate statements, inconsistencies, and mixed-up facts, but they are still interesting to hear. I may hear a particular anecdote five times within a span of ten minutes, but to me, it’s allowing for us to talk. I simply sit and listen. I respond at the appropriate cues, prompt him for more at certain points, and pretend I’m hearing him share the story for the first time. Sometimes I do let him know he’s told me before, but I give him only part of the story and let him finish the rest.

Hearing him tell his stories is how we now talk, connect, and spend time together. In a way, it’s helping us patch up the bond that was always loose. Ironic as it is, I feel closer to him now, than I ever did before.

Photo: hapal/Flickr

Every time I visit my parents’ house, it brings about bittersweet feelings. I’m glad to be able to spend time with them, but seeing my dad fall deeper into his dementia and be forced to succumb to the disease, is heartbreaking in many ways.

This was a man that growing up I saw as strong and in control. He took care of things, made rational and logical decisions, and was a provider. Now, he doesn’t even know how to properly tie his shoes. He has trouble following a conversation. He asks about things we take for granted; “Do I eat with this?” he says, as he points to the fork on the table.

It’s tough to see him worsen almost daily. The disease has completely transformed him into a different man. There are traces of who he used to be still around, but he acts and looks different. It’s frustrating, sad, and at times, maddening. And, there’s nothing we can do.

Photo by Jenny Downing

As I’ve mentioned before, my father has dementia. He was diagnosed with it about three years ago, but began to show symptoms close to six years now. His dementia manifests itself in many forms and shows in various things my dad says and does. Forgetting things is not all it’s about, but it does play a part, of course.

Two things my father holds on to very dearly are memories of Puerto Rico and music. He spends much of his day listening to the radio, old CDs and cassette tapes. He’s particularly fond of music he grew up with, especially boleros and other love songs sung by Trios Puertorriqueños, a popular grouping of three musicians. These songs remind him of his childhood in Puerto Rico, and those formative years we all cherish. He sings along and recounts memories that amazingly his mind refuses to let go.

Photo: Molly Stevens

These memories sometimes get mixed up, but overall, he has a vivid picture in his mind of Puerto Rico back then. The Puerto Rico he mostly remembers is that of his life in Aguadilla, the city he was born in, and the city he lived in until his late teenage years. His memory of Puerto Rico dates back to the late 1940s through right around 1960, before his family moved to New York City. Of course, this is not the same Puerto Rico he saw when we last visited in 2009. Though we tried to show him the areas where he grew up and played, it was not recognizable to him, since his vision of Aguadilla is not what it currently looks like.

When I received a complimentary copy of the DVD, Una Mirada a Puerto Rico, from Vme, a former sponsor of ModernMami.com, I knew right away that it was a documentary my father would enjoy. Sure enough, when I first showed him the film, he immediately began to say things like, “Mira que bella…mi isla.” (Look at how beautiful my island is.) He sang along to the background music used in the film, recognized many sights, and quizzed me on my knowledge of various historical facts. He also continually expressed his wish of wanting to go back to Puerto Rico and visit the area where he grew up, forgetting he saw much of it just two years ago. In fact, every time he watches this documentary, he has the same reactions, since to him, each time is the first time he’s seen it.

Documentaries like these help people like my father keep memories alive. But, they also help create new memories when shared with a new generation. This film will allow my children to see imagery of and hear music from La Isla del Encanto (The Island of Enchantment), the island their mother was born in and that makes up half of their heritage. For that, I thank Vme.

How do you share your heritage and keep memories alive?

Custom Hispanic Heritage Banner by Justin Edwards
and © ModernMami.com

My father recently had his 66th birthday. His father lived to the age of 64. These are the things I think about sometimes when I have a few seconds of silence and my brain takes a break from the every day hustle.

66

It’s not really that old. But, when you factor in incidents that have occurred in just the last 4 years…well, I start to worry.

In the last 4 years, my father has retired from work and has developed dementia. This may not mean much at first, except when you realize the side effects of such a disease.

For example…

Though my father has always been in pretty good physical health – despite the family health history of heart disease, diabetes, cholesterol, and high blood pressure that is common in Latino families – the dementia is making my father act differently. You expect differences in mannerisms, conversations, and daily routines, but I wasn’t prepared to see him make himself physically unhealthy.

And I could totally be way off here and incorrectly blaming the dementia. But, it’s all I have to go by at this point. I have no other way of explaining why suddenly he refuses to eat foods he always ate in the past. Or why he is a picky eater now just like a toddler. Why sometimes he won’t eat at all.

Which has all resulted in him weighing 149 pounds. One hundred forty-nine.

So I worry.

I worry that despite my mother’s efforts to make him eat, be active, and drink water, the disease will win over. I worry that a slight cold will make him land in the hospital and will completely invade his body. I worry that he’s just not strong enough to withstand…well much of anything really.

Extreme concerns perhaps, but valid given the circumstances and non-progression for the better.

And then I go past worried to just being sad.

I guess we’re on a personal phase here at Modern Mami. At least for a bit. It must be part of the whole trying to open up and un-censor myself thing. Let’s roll with it.

It’s been almost a year and a half since my father was diagnosed/un-diagnosed with early Alzheimer’s. They haven’t actually given an exact diagnosis. The exact words were “Well we don’t *want* to call it Alzheimer’s, but there’s been a significant loss of memory for a man of his age and education.”

Ummm ok. What the hell *should* we call it then?

What do you call it when you’ve known a man to be a certain way all your life and suddenly for no apparent reason, he begins to start acting differently? What do you call it when he suddenly can’t remember his PIN number? How about when he suddenly has to ask his wife if the throat drops she gave him are to be swallowed or chewed?

What *do* you call that?

Aging?

Maybe. But, it’s definitely hard to pass it off as just old age. There’s just too many little things he’s doing and saying differently.

No matter what you call it, it’s becoming very difficult to deal with. And I am a few steps further back from it than my mother. She actually has to live with the man and sees/hears it 24/7. I see bits and pieces of it all when I visit, but mostly I live it through my mom.

The more difficult part is figuring out a way to help my mother deal with things. Thus far, she’s had nothing but constant frustrations. From being told SHE’S the one that remembers something wrong, to being asked the same things over and over, to just seeing the man she’s known and loved for over 40 years slowly deteriorate…mentally. It’s a little hard to just dismiss it and suddenly have to completely shift your thinking to try to remember that’s it’s not him actually doing all that, not on purpose.

But, I can only do so much. I can’t make her understand. I can’t tell her how to handle the situations because I’m not living them. I can only suggest.

Suggest that she have patience. Suggest that she listen. Suggest that she not take things to heart. And remind her that he’s not doing it on purpose. He’s not out to get her. It’s nothing personal.

We all know that’s much easier said than done.

How do I help her change her ways to make things easier for herself? How do I help him see we’re just trying to help? How do I force myself into a scenario where I’m not being invited, but rather pushed away? And how in God’s name do I carve out even more time to actually make a difference?

It’s hard for me to be there. Truly be there – for her or for him. Time. It only allows for me to be halfway there. Sometimes.

Because it’s not just the kid, the husband, the house, work, and the second job. It’s also spending time with the parents and helping out if I can. It’s all of those and more combined.

It’s the Modern Mami effect I suppose.

P.S. As I finish up this post, the official diagnosis is back. Dementia. “You can basically say it’s early Alzheimer’s.” Officially.