Friday, September 03, 2010


Claudina in New York, 1940s.
A photo I took of my grandmother in July, as I
left for the airport to return to New York.
My grandmother was diagnosed with dementia in early May of this year, and in just four months' time, it seems everything has sunk straight down. At the beginning, her condition showed itself as occasional impatience and hallucinations. My grandmother, who is 86, thought there were bugs crawling on her or in the food. If there was a disagreement, she'd refuse to back down. She'd always been a strong person, strong-willed, and, let's be honest, damn stubborn. But this was different. It was irrational, and it was as if something had taken her over when she was having one of these moments. Some other force.

These episodes didn't occur often, just sometimes, and it was sad to see her altered, not herself, and it meant being extra patient when she was in a prickly mood. But it was manageable—for my two aunts, her daughters, who live near her, and for my grandfather, who's 89.

Amazingly, by July, the situation had become a crisis. My grandmother has the sort of dementia that manifests as rage. Her paranoia is no longer manageable. She is certain my grandfather is having an affair. Many affairs. When bills arrive in the mail, she reads them and sees other women's names. My grandfather is paying for other women. She finds an item of clothing belonging to one of my aunts and holds it up as proof that one of his mistresses has been there.

This would all be almost comical, as sad as it is, except that she is so enraged at these (imagined) infidelities that she wants to hurt my grandfather. She already does so verbally. When she's having one of her rages, she'll talk for hours about what a terrible, disgusting person he is. How he has wronged her. How she has no money now because he has given it all to these women. That he is the lowest person on earth. Ugly things, she tells him, and her face becomes distorted with an anger so potent that it's frightening.

Sometimes these rages end in her weeping, because she feels vulnerable and betrayed. Her sadness seems to come from deep inside her. It's so heartbreaking to see. And sometimes there's no sadness, only hard anger. She threatens to hurt him. Once, my aunt had to call the police because my grandmother physically attacked her. Once, my grandfather called 911. 

They all live in Orlando, not far from the subdivision where I grew up. I moved to New York 17 years ago and at first visited them at least once a year. Probably since 2005 or so, I've been going three times a year. Each visit, my grandmother would talk about how quickly time passes, how fast life goes by, and I knew she was dreading the end. I knew she was afraid of death and felt it coming ever closer. It became easier—for me, because her sadness tore me up—to visit more often so that I could always cheerfully say, "I'll see you in a few months." Of course, she'd always reply, "God willing." Writing that, I find it funny. Like she's some mordant character from Moonstruck. But really, her response was a reflection of how powerless she felt.

From left: My grandparents, Claudina and Domingo, in Culebra
circa 1941 and in Long Island, New York, in the early 1970s.
In New York (probably at either Jones Beach or Orchard Beach) in the
1950s with Myrna (left), Diana, and my father. They had a fourth child,
who is just four and a half years older than me, in 1963.

This summer, since the diagnosis, I have been to Orlando twice, for a week at a time. My aunts needed a break. They both work full-time, and taking care of my grandmother is a full-time job too. One that is unpredictable—distressed calls from my grandfather at 2 in the morning, calls at work, calls after they've just gotten home from spending hours with my grandparents. And one that is endless. And thankless. And let me say it again: endless.

Of course, there's an even crueler twist to it all. I say of course because my grandmother has probably never been an "easy" person. We all love her. And we're all in awe of her strength. When my father, her firstborn, was just a few years old, she and my grandfather split up for a while. He was in the Merchant Marine and was away on a ship. She was in Culebra, Puerto Rico—she's from Vieques, and my grandfather's from Culebra—at the time. (This was in the early 1940s.) And she saw that there would be few opportunities for my father once he grew up. So she moved to Brooklyn to stay with an aunt of hers so that she could make a new life. Neither she nor my father spoke English. She found work as a seamstress in factories, and she took care of them both till she and my grandfather reconciled I guess a year or more later. No small feat to make it in a strange city, when you don't speak the language, have only an eighth-grade education, and grew up on a farm that had no electricity or running water. You better believe we admire her strength.

Plus, she's beaten cancer (she's had two mastectomies), has lived with diabetes for almost 20 years and managed it flawlessly, and very nearly died one recent Thanksgiving—heart failure—but pulled through. This woman cannot be taken down. My aunts call her "The Tower of Power."

A photo I took of her in her kitchen, just before bed, last Christmas.
A photo I took my first morning there,
when I visited her in June.

That same June visit, I asked my grandfather how
he was feeling about things. He closed his eyes.
My grandparents sleep in separate rooms now, at my
grandmother's insistence. Here's my grandfather in
the spare room where I used to stay when I
visited. I used to read by that lamp just before bed. 

The crueler twist is that apart from the rages, my grandmother is almost exactly as she was before the diagnosis. She seems entirely herself. She takes care of her appearance. She takes care of the house. She cooks. She enjoys spending time with her dog. She certainly remembers all of us. It's not like she doesn't know what's going on around her. Until the rages. So it really cleaves our hearts to think about putting her in a nursing home, against her will—because she does not want to leave her home; she loves her home and her dog and her plants—during those times when we're talking with her just like before, when we're all eating dinner together and it's nice, when we see her in the back porch sitting with her dog and looking out at the trees and sky and enjoying the beautiful yard. How can we stomach putting her somewhere with strangers? How can we be at peace thinking of her alone at night?

With her dog, who has become her closest,
and most trusted, companion.
During my visit in July, she had an episode that was
a combination of despair and vitriol. She went outside
and sat alone on a plastic bench by the pool. I went
and sat next to her. She was fuming, talking about all
the wrongs done to her by my grandfather. I just listened.
Eventually, I asked if we could look at photo albums
together. She agreed, but she would not go back
inside where he was. So we sat together by the pool,
and she took my through some memories.   
My grandmother and me in Long Island,
probably 1970.
But that's where we are now. It's just gotten so bad at the house. It really can't go on. My aunts and my grandfather—who are bearing this every day, while the rest of the family, myself included, is far away or perhaps staying away because they're just not able to cope—are all beyond exhausted. They're deteriorating, emotionally and physically. I can hear it in their voices.

So my aunts are talking with a lawyer about having my grandmother committed. It has become an issue of survival. I cannot believe that this is where we are. Already. None of us can.

My grandmother's name is Claudina. She is a person, not just a patient. I hope the people at the nursing home, who we will be trusting her with, will remember that.

Oh, mi abuela.


Myrna Feliciano said...

My niece Kristina has described this situation perfectly. It is hard to see the person who has raised and spoiled you all your life become so angered with the person she has spent 68 years of marriage with. At times we feel helpless trying to find solutions to cure her dementia rage. Since my sister and I have been closer to her most of our lives, we blame ourselves for not capturing this sickness sooner and relieving her of rages, but it is possible that even if we did, nothing would have changed. This is a crazy sickness. It is not like having a headache and taking a pill that makes the headache go away within an hour. It is a Dr. Jekyll and Mr. Hyde syndrome. We have been amazed at the verbal attacks and are always in fear of the possibility of physical attacks. It is a guessing game every day and a game I would not want anyone to learn to play.

One thing is for sure, the woman having these rages is not my mother. Sometimes I think she has been possessed by demons and that the "worms" she consistently is pulling from her pores are the demons she is trying to pull out of her body. She also sees a bunny every other day in the yard, which no one else can see but I think it is a Guardian Angel coming to be near her. At least I know it has to be a Guardian Angel because our little dog Onyx runs out there wagging her tail.

My real mom is an amazing person; she has always been there for us no matter what obstacles have been in her way. I remember being diagnosed with colitis and was suffering for 2 years with this sickness. My mother knew this was not the right diagnosis, and amazingly enough she took me to many doctors until she found the one who cured me (it was a rare amoeba, not colitis). I also had severe double pneumonia and was told I had to be in the hospital 2 weeks. They said if I didn't stay in the hospital, I wasn’t going to make it. What did my mother do? She said, "I will take her home and take care of her," and she did. In short, she has saved my life many times. So seeing her in this condition is heartbreaking to me, and I feel helpless not being able to do the same for her as she has done for me. Yes, we have taken her to every doctor we can think of and gone through the same tests over and over (it's like a loop) and it has not gotten us anywhere. I pray God will be there to guide us and make the rest of her life, even if it is just for a few moments a day, pleasurable.

As my niece mentioned in her writings, we are in the process of trying to place her in a nursing home, which we hate but we have avoided this solution too long and my poor dad will not be able to cope too much longer. My sister and I unfortunately cannot be there 24/7, so we are dreading the day she will be placed in a nursing home and are scared she will not survive the change. So I pray I have the same strength my mother has had all her life and will continue to do so……………… Myrna

David said...

I find that it is not possible to put my feelings into words. All that has been said so far is true and emotionally difficult for me to even read. For most things,due perhaps to arrogance, I have been fortunate enough to solve problems or offer several choices for resolution. Now a feeling of helplessness is all that is felt; the arrogance of knowing anything is gone. I am especially praying for my sisters and my Dad who are in the front line of this....
David, Mom's first Son.

Margaret Ruggieri said...

I just had to post a comment on this situation your family is having to live with. This has touch my heart so close to what I had to go through with my very own mother, a person who was also so strong and always there for me. My mom had dementia so bad she could no longer see her face in the mirror only a stranger it was so hard on me to also chose a nursing home for her. But someone at the home told me I did the right thing and not to blame myself for what I had to do. Their are so many levels of dementia that family's out their have to deal just know that God will give you the strength to make the right and best decision for you and your Father. My Prayers are with you Myrna and Diana to make the best choice for your mother. Love always Margaret

Paul Heald said...

My heart and prayers go out to all of you. I dealt with similar issues with my father. I hope it helps to know that others care. Your mother father and all of you are in my thoughts and prayers.
Paul Heald