Sugar in the Morning, Sugar in the Evening

With Jane and Ralph finally here from London, we are ready to celebrate Christmas on New Years Eve. Secretly Dennis and I will also be celebrating our 10th Anniversary. Neither of us believe he will make it to our real anniversary date in May.

Yesterday was a day filled with frustration and anger. Dennis had an appointment for a feeding tube change and I asked Raquel if she would take him by herself. It did not turn out well. They exchanged unkind words and he came home angry and she came back crying. I let her go for the day.

Then Dennis and I joined Jane, Ralph, Hamed and Ashely for lunch at a local Persian/Turkish restaurant and Dennis was still in a mood and I was angry with him for running off Raquel. We made it through lunch, but the drive home was a bit hincky.

A new perspective came to me this morning. I have too many rules that I have put in place to keep Dennis alive longer. He can't have anything with sugar, corn syrup, dairy products, etc - anything that causes phlegm build-up. He can't eat anything after 2 pm, because he just spits it up and makes a mess for me to clean up. He can't eat in the car for the same reason.

All of these rules are in place for his benefit - or are they? I really prefer not having to vacuum out the crap in his throat each night from over indulging on sugary stuff. His doctor did say no more food so he would not choke at night. I hate cleaning the floor every day, every where he has decided to munch on food.

I could give up any kind of food so easily, but Dennis lives for food. Other than me, food is his number one love. Especially anything with sugar. He lives for desert. My sister understands this - she makes sure he always has a pie whenever he comes over.

This morning I understood that I was taking away his life from him. Oh, I was doing everything that I could to lengthen his life, but I wasn't giving him what he really wants - control over his own life.

So after today (so he can eat and talk tomorrow) he can eat and do whatever he wants. If he wants sugar, he can have it. Chips, not a problem. A bag of sugar, a cookie, whatever he wants, whenever he wants it. I will dig the food he cannot swallow out of his mouth. I will pick up the spills and spit from the floor and his chest. And I will not complain.

I did sob and cry and sob some more all day, though. I don't want him to die. But he will, he is dying. And I don't want to fight with him anymore about anything. We just do not have that much time together anymore.

Until later,
Dennis and Ann

Just the Two of Us

It isn't easy for Dennis to move, but every once in a while we manage to find a way to hold hands. Here we are in the champagne/martini bar before dinner while on the cruise.

This is the two of us at the back deck of the ship. We sat here and watched the ship go through the Panama canal from this spot. It had both shade and sun - something for each of us.

And finally, a picture of us sharing a kiss beside the Christmas tree.

Until later,
Ann and Dennis

Lima, Peru Colores

Through out South America, color abounds. Some areas of Lima have multiple colors like the picture above. Side by side you will see rose colors, rust colors, blues and the mustard yellows (painted for a pope visit - his favorite color).

The government center was all a whitish gray, however. This color was only broken up by the cars, the guards and the Santa Claus waving to the crowds.

The changing of the guards was slower than molasses, and after 1/2 hour we had to stop watching. First a band what I assume was the national song two times. Then the new guard came out and slowly marched down the stairs and began to cross to where the guards leaving duty were situated.

It was all very regal. Lastly, in the center of the government plaza were several gardens of marigolds.

We enjoyed Lima, but as on any cruise you only get a small taste of what is available to see. I believe Lima is a place that I will put on my bucket list for the future. What we saw, we liked.

Until later
Ann (finally feeling a bit better) and Dennis (in for a tube change today)

Hospice, Part II

I had my 50 minute hour with my therapist yesterday, crawling in on my hands and knees. I came away feeling stronger and ready to fight in spite of how my body feels.

I will not settle for a social worker that says "NO" to a feeding tube. A good social worker will fight and scrape to find a way to get what the client needs.

So last night I wrote to a few different agencies that provide hospice/palliative care. And today I received a response from one that is willing to work around the feeding tube business.

We have an appointment next Monday at our home. Maybe they will be a good fit. Maybe not. But at least, once again, I have not given into the rules. One thing I have learned over the years is that there are no absolutes. And today I am feeling strong enough, once again, to find the right fit for Dennis.

And Jane and Ralph are both coming home sometime today. Life is good, once again.

Until later,
Ann and Dennis

Thanks, Tracy

This article regarding hospice care was sent to me by Tracy. Thank you Tracy for sending it to me. I thought it warranted posting a link here for others.

http://www.hospicepatients.org/hospic28.html

This article discusses, among other things, how it may be possible to get around the issue of a feeding tube while having hospice care at home.

My fever is roaring and Dennis pooped in his sleep again, so I am in a rotten mood. I will say no more.

Tomorrow

I am tired and probably should not be doing a blog entry right now. But here I go, anyway.

This has been a boring Christmas. I have an airport cold, and Dennis is as needy as ever. Naturally there is no help because of the holidays and I have become spoiled. I had to cancel dinner with my nephew and his girlfriend. I just could not get Dennis ready and dinner ready and maintain a smile on my face.

So we are stuck with $100 dollars worth of food that I don't particularly like and Dennis cannot eat.

Yes, I am complaining. LOUDLY.

I will admit that I am unhappy. This is most likely Dennis' last Christmas and neither of us enjoyed much of the day. We did watch Penelope late in the afternoon, and we were able to smile a bit, but it just was not quite right.

Even though Dennis has been pooping at night in bed, after clean up the pressure sore seems to be improving. But I am not a nurse or doctor, so I don't always know what I am looking for in a problem.

Enough complaining. Tomorrow may be better. I mean, tomorrow will be better. It's only a day away.

Ann and Dennis

Pressure sores

Off the topic of travel for a moment.

Pressure sores. They used to be called bed sores, but obviously times have once again called for a new label that is more acceptable. This one actually makes sense to me. Tissue is damaged from too much pressure on one particular area of the body. While this may happen from being in one position in bed, it may also happen because a person is wheel chair bound.

Dennis is beginning to develop pressure sores. What do I do? I call the doctor, I look up information on the Internet, I check out the Mayo clinic site and blah, blah, blah. What do I get?

A bunch of contradictory information.

Keep it dry. Keep it moist. Bandage it. Don't bandage it. Move the patient every 15 minutes (yet another toil on my sleep). Again, blah, blah, blah.

It seems to me that bed sores have been around as long as man has existed. How can it be that there is not a real treatment for such an every day occurrence? Have we, as a medical field and a society, just ignored the pain a patient must be in once bound to a bed or a chair? Why hasn't anyone warned me about this before it became a problem?

Okay, I am frustrated. I am sick myself, and since it is a holiday, I have no help. My sister and brother in law are not here because of bad weather (3 inches of snow) in London and some paper work that the US requires for visitors (Ralph is still considered a visitor). I invited Hamed and Ashley over for Christmas Day, and I feel like shit. So perhaps this is not the best time for me to write about such a common ailment.

Maybe I should just make myself a hot brandy (I actually do have brandy in the house for my "famous" Christmas coffee) and try to go back to sleep.

And, no, there will not be a picture today!

Until later,
Ann and Dennis

Arica, Chile

In Arica, Chile, we found an area that had geoglyphs. In the picture above you can see the remmanents of an old community and the geoglyphs below. Some believe they were works of art, others believe they were used for communication between communities. At least this is what I was able to figure out with my Spanglish.

We all fell in love with Arica. It is a desert with tons of sunshine. The locals were beyond friendly and went out of their way to please. I think I would love to return there one day soon.

As we entered the port, we were greeted with this image.

Since cars were not allowed up the hill to see the view, we were unable to climb to the top. Neither Raquel or I were inclined to push Dennis up the hill. In reality, I wasn't all that interested in the hike and Dennis made a good excuse for laziness.

As we feasted on cheese empanadas, fries, spicy chicken and cold beers, I knew I had landed in a little piece of heaven.

Ann and Dennis

Lima

Since it is Christmas Eve, I thought I would post a picture of a manger scene from Peru. We were in Lima, and saw many different types of manger scenes - most tacky, some colorful and some, like this one, rather regal. This particular manger scene was in the government section of Lima.

However, do you notice that there is no baby Jesus?

I am not going to pretend to understand other cultures, let alone the catholic faith. I am a traveler, but mostly an observer of life, seldom a scholar. I have no idea why the cradle was empty, and my Spanglish is very, very limited.

In Lima there were several tours that were suggested by the cruise line, but none were set up for a disabled person. So we simply hired a taxi driver and asked him to take us to places he wanted to share. He took us to the old town center (I may have mentioned we like this) and the government center was in the old town. So was a museum that housed the bones of many, many, many dead people. For some reason, the monks that buried the bones, decided to divide the bones up by size. There were piles of femurs, piles of skulls and piles of hip bones. Pictures were not allowed, and neither was Dennis.

He was allowed into a museum, however, that had mummies on display. They had been preserved in the simplest of manners, with banana leaves and such. Here is a picture of a baby that was several hundred years old.

South America, in the ports we visited, does have a long way to in means of accessibility. But the people we met were kind and helpful. And that goes a lot further in my little book than almost anything else.

Dennis and Ann

The Local Loco

I am starting with this picture, because it comes attached with one of my favorite stories from our trip. Our last stop before the disembarking stop was La Serena, Chile. It is a small fishing village located in a bay. On the opposite side of the bay is a developing tourist area. We did not make it over to the tourist area - we usually prefer to hang out where the locals spend there time.

There were quite a few fishing boats that had docked before we arrived and the fish were cleaned and ready for sale. But several sea lions and pelicans were still looking for more entrails, bait fish and other assorted foods to fill there bellies. I don't think this little cutie has ever had to hunt for his own food.

Dennis wants to return to this earth as a pelican, so I had to include a picture of these guys too. Frankly, I think his karma is quite a bit higher than a pelican, but then again, maybe this is the easy life that he deserves next time. He has promised to come to me if he ever sees me on a beach somewhere out in this big old world. And I will call "Danielito" every time I see some pelicans, just in case.

After we finished taking in the scene, we entered the restaurant area of the village - all serving the catch of the day. I ordered a pisco sour for all of us because a person is not supposed to leave Chile without trying at least one, since it is the National Drink. It's a bit of a cross between a Daquari and a Margarita.

Then we ordered empenadas. Dennis and Raquel were not feeling so well, so they went for the cheese filling. I could not leave without downing some fresh seafood and I ordered one filled with the catch of the day. Out came a meal in a pocket - it was the size of two fists put together. It was delicious.

There was a single man sitting at a table behind Dennis and Raquel, but in my view. He started at us the whole time. Not a luring stare, or a curious stare, but a very menacing stare. He was talking into a phone and playing with his hair. He wasn't really eating, though he had food in front of him.

All of a sudden Dennis started chocking. I dashed out of my seat and started a Heimlich while Raquel and the table of people behind me pushed the table away and called for help. It was all over in a minute, and we went back to enjoying our food.

A few minutes later, the people at the table behind us began to leave. The woman spoke English and said she didn't want to scare us, but the man that had been staring at us was calling the authorities. He was ranting about how I was trying to kill my husband and he had witnessed the whole thing. The waitress came over and hid our pisco sours, trying to protect us in case the police did show up.

The dude then left the restaurant, and we paid our bill and left too.

We named him the Local Loco. Raquel and the waitress figured he was taking some sort of drugs. I think he was simply delusional. Whatever, we made it out safe and sound, and Dennis survived his latest chocking event.

It's nice to have my computer back!

Ann and Dennis

Home Again

What a wonderful trip. It turns out that it was a "repositioning" cruise, so it really was a once in a life time trip. We visited Columbia, went through the Panama Canal, Ecuador, Peru and Chile. It was spring, for most of the trip, and I even found myself with a bit of a tan at the end.

Dennis did fairly well. We decided to skip the doctor's orders and let him eat. But I was strict about the dairy and sugar. Of course, he was always trying to get Raquel to give him some sweets when I wasn't around, but she just told him she did not want to face Ann's wrath later.

I am busy unpacking, washing clothes and Christmas shopping this week, and my computer is still in the shop. I won't be blogging much, but promise to catch up with some pictures and stories soon.

In the meantime, I wish you all the happiest of holidays and a very, very merry New Year.

Ann and Dennis

Vacation

We are headed out early Sunday morning for our cruise. The three of us (yes, we are taking Raquel again) will leave from Miami, make a stop in Columbia and the we cruise through the Panama Canal. After that we head down the west side of South America, making stops in Ecuador, Peru and Chile. Two weeks of warm weather and sun.

I ask that anyone who has a few moments each day, to send positive thoughts down our way. I know that sounds strange since we are vacationing, but Dennis has not being doing well lately. He has been waking at 3 am gasping for breath. He is breathing through a nights worth of plegm gurgling in his throat. We spend the next few hours suctioning, nebbing, and repositioning. We are both exhausted.

Dennis is now unable to eat any food. At least that is what the doctor ordered. How well he will follow this order remains to be seen. We hope that it will decrease the plegm and increase the sleep.

Look for pictures in a few weeks.

Until later,
Ann and Dennis