Sunday, November 9, 2008

Farewell Lucila

Lucila Santos will be waked at

Rivera Funeral Home
4543 Kennedy Blvd
North Bergen NJ 07047
(201) 861-6899

Tuesday 2pm - 9pm (November 11, 2008)
and Wednesday morning from 8:30 am (November 12, 2008)

The funeral procession will begin at 10:30 am Wednesday morning to

St. Augustine's Roman Catholic Church
3900 New York Avenue
Union City NJ 07087
(201) 863-0233

Following the Funeral Mass, Lucila Santos will be interred at the

Arlington Cemetery
748 Schuyler Avenue
Kearny NJ 07032
(201) 991-1611

(Please note that these directions are to the corner of Schuyler Ave & Belleville Turnpike, and not to the burial site. Please follow the funeral procession as it departs from St. Augustine's, as the procession may enter from the Belleville Turnpike side entrance instead.)

Thank you all for your kind words.

Friday, November 7, 2008

Lucila Santos 1909-2008

"I Love You. I Love You."
"Me Too."

With that Lucila took her last breaths in the arms of her niece Soledad, and began her everlasting journey with her Diosito.

"I Love You, I Love You"

I didn't sleep much of the night. I just couldn't find a comfortable position. Rita and I just kept exchanging glances the whole night. "You sleep." "No you sleep" "Close your eyes." "You first." "No you first." I enjoyed having my niece spend the night, although she couldn't sleep unless I slept, so she hardly slept the whole night.

In the morning, my doctors started seeing me early. My doctor, a young Cuban woman Resident came in at 7am. She wanted me sitting up more so that I can keep my lungs clear. Soon after 8am, I was down in x-ray getting my chest and abdomen checked, when my people came in to check on me. I was happy to see that my little buddy came down to the 3rd floor to find me and escort me back to my room. I had a good morning. I ate and enjoyed those moments with my visitors.

I got a bit of rest after breakfast, and ate well at lunch. I wasn't eating as much as I normally do, but certainly more than the last few days.

I was very dry, and was outputting very little from my kidneys. My urine was very, very dark. My bowels were hyperactive, and so I was asking for the bed pan constantly, although I didn't have much to excrete. Most times, nothing came out.

I was restless much of the day. Again, I couldn't find a comfortable position. My fever was down a bit, and I was eating better. These signs were giving many some optimism about my condition. My Soledad had to step out for the afternoon. An extra afternoon soup and yogurt was ordered for me; both pureed. Plus I had some special thick cranberry juice, one spoon at a time.

I had a general unease. Nothing was giving me comfort. My intestines were giving me pain, so they gave me a little something for relief.

Sergio went to get Soledad. I was so happy when they got back. He came in first and told me Soledad is here. I looked him in the eye and asked where. She's coming in, he said. I was so happy to see her. She came in and cried. I was worried about her, and told her not to cry. She said she loved me. She stepped out. When she came back in, again she cried and told me that she loved me over and over. I had another sip of thick cranberry juice. I looked at my Soledad and she looked at me. "I love you. I love you."

Thursday, November 6, 2008

Hopeful But Concerned

I spent most of the day resting. My fever had spiked higher so the staff was busy checking to determine what was causing the fever. They took new blood cultures, and additional labs. I slept much of the day, as I needed rest.

In the evening I got better. I was eating and talking, and made everyone feel a bit better. My improved condition came just in time for some visitors, including Rita who stayed with me the whole night.

Evening Visitors

I was looking good and feeling good just in time to receive some visitors.

Jessica feeding Luci

Jessica and Patrick hanging with Lucila

Wednesday, November 5, 2008

Back to the Hospital (Again!)

I woke up early today needing to move my bowels again. The only problem was that it was now dark, green and the scent had changed. That meant that my bowel was infected. Plus, I continued to have a sustained fever. Calls to the hospice, and them waiting for a response from my doctor was taking hours. We called my clinic directly and spoke to my doctor. She suggested that we go back to the hospital for IV rehydration, chest x-rays to make sure my pneumonia hadn't come back, and treatment for my bowel infection.

Back to Hoboken University Medical Center. We arrived late afternoon and spent the entire evening getting the necessary exams and labs. The medical service admitted me to the hospital. the residents and medical student reviewed my case in detail for a couple of hours and sent me up to the floor just before midnight with complete set of orders.

Up on the floor, Bernadette was my nurse. She had taken care of me last week on the same floor. Bernadette got me admitted to the unit and set up in my room. She started my treatment protocols including IV fluids and IV antibiotics. The irony; I needed antibiotics to counter the infection that antibiotics had made possible in the first place. The antibiotics that I had received to cure my pneumonia(s) also cleared my intestines of most of its bacteria. This left my gut with very little bacteria and an environment in which a nasty bacterial infection could take hold quickly.

My ahijada Rita was with me much of the day, including waiting with me in the Emergency Department most of the evening. Soledad and Sergio went home between 1am and 2am.

Tuesday, November 4, 2008

A Matter of Perspective

Today was a struggle. I was feeling a bit under the weather. I woke up with loose stools. My intestinal irregularities continued the whole morning, until finally someone had to run to the pharmacy and pick up some Immodium. That finally plugged me up.

I had a couple of visitors today. My compadre Jorge stopped in to help care for me for several hours in the middle of the day. My niece Beatriz also stopped by to take over from Jorge later in the afternoon. It gave my people a much needed break on Election Day.

At night, Barak Obama giving his acceptance speech was an exciting moment for my niece. At the very same moment we were excited that I went to bathroom and was able to pee without any intestinal issues whatsoever. It meant that everyone went to sleep a bit more relieved. I just got Tylenol for the fever. One down, one to go.

It's all a matter of perspective; the things that will move one. Some moments of excitement can lead to national and international change. Others like my little moment are of a more simple nature. 

Monday, November 3, 2008

I Looked Great

Liesal, my personal home nurse, from the hospice care program, came to see me this afternoon. She was so excited to learn all about me. Liesel will be my regular nurse. This being her very first visit; she asked lots of questions about me.

Liesal said I looked good. You can't imagine how much comfort that brought to me. I held up well over the years, and look so young, she added.

I knew from the moment that she came in that I liked her. She made me feel good about everything. Mostly, she said my pressure and my lungs were good; that's what I'm most concerned about.

Just as my nurse was about to go, I asked for an apple sauce. I was hungry I said. So, I was eating apple sauce as Liesal left for the day. I wasn't properly dressed to go out to the living room, but after she left, I got dressed and went out to the living room. I hadn't moved a bowel for hours. Yeah! But had to again, on the way out to the living room, and again, soon after getting there. This super-regularity is becoming a bit bothersome. I'm going to take some Pepto-Bismol and have some water pudding. Guess, I'll stay in bed a bit longer; it's closer to the bathroom.


Stress can be almost unavoidable.

I was discharged Friday, and everyone was expecting that I'd be doing better than I did the last couple of days. I will likely get better soon, but my current state is stressful to those who car about me nonetheless.

I've been having very frequent bowel movements, so many that some blood was found in my stool this morning. This is a likely indication that I have an irritated colon from going so much, and developed some hemorrhoid(s). The hospice care nurse and my niece Raquelita were both reassuring when called for advice. Liesal, my home nurse from the hospice care program, will come for the first time this afternoon.

Nonetheless, the constant worrying about my health and life is stressful. The struggle with the philosophy of hospice care, and trying to reconcile the desire for a continued peaceful life with the possible call of urgency of a medical condition that could need hospitalization. Hospice care tries to keep patients at home where they are more comfortable and familiar, instead of in a hospital setting. To complicate matters, until recently I've been in absolutely great health, much better than many decades younger. So trying to figure it all out is not easy. Will I quickly get back to my old self, or does everything continue to get harder for me each day?

End care is stressful for myriad reasons. There are these questions of life and death that consume those who love you. There is also stress from the physical, financial, and emotional concerns. My daily needs take a physical toll on my immediate care takers as their own needs for nutrition, sleep and rest are often set aside to make sure that I'm cared for properly. Financial concerns can also cause stress because not only do my needs add extra costs, but the time taken to care for me interferes with their income generating activities. Emotionally, this is all hard for those who care.

My niece who loves me very much and took me in two and a half years ago is bearing the greatest amount of this stress. Unfortunately, she relieves her stress on my other little buddy, who is always here to help me with everything. He was here for me last weekend when I needed to get readmitted for Pneumonia; when most of family was able to go off to Miami for the wedding. He has followed my medical care constantly for these few years, especially during my two most recent hospitalizations, and every time that I need medical care. If there are two reasons that I'm doing so well these last couple of years, they are: 1) these two have provided me a stable home, and 2) he has directed my medical care, always being present at each doctor's visit so that my physicians' diagnoses could be properly understood and their orders properly followed. This misdirected stress is hurting the two people I depend on most in this world right now. Because of all this stress, she can get very angry, which can make things unnecessarily difficult. I don't blame her. The burden is unbearable. Yet she manages.

Financially, they are hurting. Business is not what it used to be because of the economy. The financial meltdown is interfering with business.  Yet they always somehow find a way to take care of me and my needs. I don't mean to be a burden, but they need help. 

I have family all over the world, but they have their own problems, and these two are too proud even to ask for help. My scattered family is found in countries with weakened economic opportunities, or in countries with better opportunities but in a current slump, or in school, or also dealing with businesses or investments that are not doing as well as hoped.

Please help. Taking care of me for even short periods of time, or taking care of the people that take care of me would be of the greatest sources of assistance that I could get at the moment.

Sunday, November 2, 2008

Special Water Pudding

I'm a bit stronger than yesterday, but still running a fever and having a bit of intestinal difficulties. The loss of body fluids, together with a thin fluid restriction creates a special problem for me. To fix this problem, I was given a special homemade water pudding.

Special Pudding Recipe

1 qt cold water
3 heaping tablespoons flour
3 heaping tablespoons sugar
pinch of salt

Mix flour with cold water in large sauce pot. Add pinch of salt. Bring to boil on medium heat and simmer on low heat, mixing constantly until mixture thickens. Add sugar. Mix thoroughly until all sugar has dissolved. Pour onto large wide plates for rapid cooling, or into shallow soup bowls for use later.

This special water pudding provides much needed water. The cooked flour helps bind loose bowels, the sugar provides much needed glucose, the salt provides some electrolytes.

Be sure to add potassium elsewhere in the diet to compensate for potential loss of electrolytes. Possible sources of potassium include eating a banana for anyone who can tolerate it, or some cooked smashed plantain for those who are a bit more delicate. The starch in these can also provide some binding. To add more binding, feel free to add an extra heaping tablespoon of flour or two. Also, potentially useful for binding are apple sauce, and rice.

Salt can be adjusted to accommodate low-sodium diets for hypertensive individuals, but ought not be omitted entirely unless a bit of sodium is present elsewhere in diet, in order to provide for possible electrolyte deficiency.

Sugar can be adjusted for diabetic individuals, or replaced entirely with sugar substitutes or omitted if absolutely necessary for reasons of blood glucose levels. For everyone else, the glucose in the sugar provides much needed nourishment.

The Roller Coaster

I started getting my nebulizer breathing treatments last night, which as helped. My weakness increased overnight. I had been getting progressively weaker throughout the day. Because I developed a fever I was given Tylenol. It is early Sunday morning and I feel a little better, but haven't gotten much sleep. I wonder if anyone else at home slept any. I'm going to try to grab a few minutes of sleep before Raquelita comes to visit this morning.

The nurse who answered the hospice care hotline in the middle of the night said that it can be like a roller coaster. Some days everything seems so well, others not quite so. Yesterday was a not quite so day. Let's hope today is a little bit better.

Trying to figure out whether to go back to the hospital is tough for everyone.

Saturday, November 1, 2008

First Home Care Nurse Visit

Brenda, the nurse from Compassionate Care Hospice, came over this afternoon to evaluate me and admit me to their service. She was very nice. I made her smile several times. When you get to know me, you'll realize that I'm a handful. Even in my condition, I requested that the lights be turned on when Brenda was reviewing the paperwork.

To help me with my breathing, Brenda ordered a nebulizer machine and breathing treatments. That way, I can feel like my old self again.

Today more on my mind is, "Que Dios me lleve al cielito." - May God take me to heaven.

This is right in line with hospice philosophy; a compassionate end. Yesterday, when I was feeling much better; having just received outstanding care at Hoboken University Medical Center I was more inclined to return to the hospital for acute care if need arose because of a similar episode in the future. Today, I'm not so sure.

I'm sorry for the pain and suffering that I cause those who worry about me. I'll be fine. Don't worry about me. God has given me a great life, and many people who care about me. Every day that God gives me breath is a gift.

First Morning Home

I woke up this morning at home, which makes me happy. However, I'm not feeling so good. The oxygen compressor was filling my small room with electrical motor smell so my oxygen was turned off during the night. Plus, My last nebulizer treatment was yesterday at noon. I'm struggling a bit for air. I'm only complaining about the arthritic pain in my legs or arms. I don't complain about these pains when I'm feeling better, usually reserving such comments for my less well days.

Right now I am awaiting the arrival of the hospice care nurse, who will do my initial home evaluation. I'll drop you all another note later to keep you informed of my condition.