http://onepartwidow.blogspot.com/

Thank You

Thank you to each of you for following my blog. It was written with love, pain and frustration. I started a new blog, Life After Care-giving, but it did not have the right feel for me.

I have started a new blog, one that feels more up-lifting. It is called One Part Widow. If you wish to remain a part of my life I would love to have you tag along.

Thank you for reading this blog for the past 3 years. I hope you decide to join me once again.

Ann

New Blog

I guess I have become a writer. I also know that my story has changed. I am closing this blog and beginning a new one. You can find me at Life After Caregiving. Of course, you may also follow Shiva's blog. She seems to be channeling Dennis at the moment and definitely has her own take on our world.

I hope you decide to join our journeys with us.

Ann, after Dennnis
Life After Caregiving

About Saturday, 1/08/2011

Dennis woke me up about 12:30 with his gurgling in his throat. I got up and tried to suction it out and he bit down, and ended up nicking off the tip. I tried to reach it, but he bit me and it went further down the throat.

Despite his wishes, I had to call ER to see if they could get it out. There was no way that I could let something as silly as a blue piece of rubber be the death of him.

As we sat in ER, reading over his health care directive with the doctor, I was writing a blog entry in my mind. I was going to make it a light story, and end it with "he is resting well at home."

But that was not to be the case.

I was on the phone all evening with the on-call hospice nurse. We were trying to figure out a way to get him back home once the little blue devil had been removed. We worked together on getting oxygen for him at home by 4:30 AM, then moved it to 8:00 AM when it was apparent we were not going to get home before sunrise.

The ER staff recommended a few things that were not heroic. They were unable to reach the blue devil, but with a camera at the end of a tube they were able to spot it laying on top of his voice cord. Dennis was clenching his jaw. In the very tiny recesses of my mind, I suppose I knew that was his was of saying "No", but it wasn't making much sense to me at that moment. Someone said this is a natural reflex and  I said go ahead.

They sedated him because he was still holding his mouth shut at all costs. I opened one of his lids and he was still sparkling, looking at me with love. I asked him if he would cooperate and open his mouth and he squeezed my hand, saying yes. Looking back, I know he was just doing this for me.

Within minutes it had been removed and I cheered, but one nurse said - "not yet." They injected him with something to counter-act the sedative and with the aid of a mask and a hand held pump, they got him breathing again. Not entirely on his own, but he was breathing. The nurse and I rubbed his chest and encouraged him to breath. As we did this he would take deeper breaths on his own.

Then they told me he had pneumonia and would need to stay at the hospital. I said I wanted him treated at home. I was told it would be impossible to transport him at this time, and that he would need to stay for a while. They changed the hand-held pump to a machine to support his breathing. The antibiotics were then started.

Then they tried to suction him out. He spewed out green bile all over the place - both out his nose and mouth. I took this as a good sign; they were clearing his lungs and he would be home for our 8:30 appointment with the hospice pharmacy and visiting nurse.

He was stable, and I asked if I could leave to drive the 2 miles to my house, brush my teeth and feed the cat. "Yes! I am right here watching and he is doing great." I returned 20 minutes later and they were preparing to move him to a room. I followed along.

Dennis has had cases of pneumonia before, and I figured he was going to general population. But we stopped on the ICU floor. He was wheeled into a room, surrounded by nurses and doctors asking questions, changing his breathing mask, trying to suction him again, giving him more drugs......

After I was able to reorient myself, I asked the doctor how long they were going to keep up this drug routine.

Until he can breath on his own.

How long will that be?

I don't know.

Is this worth it, I asked him - will he improve?

Are you asking will he ever leave the hospital?

I suppose that is one way to put it.

I have very little doubt that he will ever leave here.

Then we need to pull off the oxygen, all the other supports and let him go now.

So they did. The nurse pulled him over to one side of the bed, and made room for me. She removed the mask and removed the wires and all the other jazz that was standing in my way of holding him close to me. And I held him. I held him until he took his last breath. I held him for a few more minutes and then left the room to tell the doctor. He was pronounced dead at 8:30 on January 8, 2011.

Until a bit later,
Ann, without Dennis

Dennis Died

I don't know what else to say right now. He died of complications due to his MSA.

Thank you for following my blog.

Beginning the Art of Dying

What a whirlwind week. Bed in and bed out. Old feeding pump leaving and a new one arriving. Nurse visit, social worker visit, Pastor and another nurse visit. A few new medications, including a patch to dry up the mouth, a dressing called a skeleton band aid for the bedsores and morphine, something Dennis has always dreamed of trying. Two new PCAs interviewing and filling out applications. Calls and emails to inform family and friends of a change in Dennis' care.

Yes, it's been busy, but everyday that something new happens, it's been good. Every person that has come into the condo has been friendly and caring. Each visit has assured us that we have made the right decision to begin hospice care for Dennis.

For the first time in a very long time, I don't feel over-whelmed. For the first time in a long time, Dennis feels free of pain. For the first time in a long, long time, we both have slept through the night.

This may not be a time for great joy, but it is a time for gratitude.

As Dennis said today, we made the right decision once again.

Ann and Dennis

Dennis' New Bed

Our new hospice organization already supplied Dennis with a new bed. It is a pressure guard mattress. Since I can't explain it well, I have put the link to the particular mattress that he has right here.

Dennis' New Bed

It is eligible for medicare reimbursement, according to the ad.

I am not promoting this particular model, but I am promoting the type of bed. Dennis slept like a baby. Until last night, he had only used his medical bed twice. Now I am sure that I won't be able to keep him out of it!

As for me, I slept through the night for the first time in months. There were no wake up calls for repositioning because the bed automatically does this for Dennis.

I know that some of you out there are dealing with positioning issues and bed sores. If you are, I highly recommend that you find a way to get one of these beds into your home.

Of course, tonight might be different. Stay tuned.

Hospice, Part III

We found the right hospice.

Do you know that feeling, when someone walks in the room, that the decision is really already made? It wasn't quite that easy, or that swift, but it was close.

When I talked with my therapist last week, I mentioned that I had diagnosed Dennis long before his doctors had given his disease a name. Then we were talking about the last hospice we interviewed and the problem with the feeding tube. I didn't want to do the fighting on this one/ I am tired and I knew the right person could find away around the feeding tube dilemma without having to play games.

So I went online again and looked for a new hospice team. I wrote to two agencies and let them know what our needs were. One wrote back saying they could not help and the other told me their mission was to meet the needs of the patient, whatever those needs were.

We met with them today and after ALL of our questions were answered, we signed up. We only met two of the staff today, but by the end of the week we will have met with two more. A new mattress for Dennis' bed that somehow adjusts his position through-out the night so I don't need to get up every two hours, has already been ordered.

I have been called a good advocate for Dennis, but maybe I am just trying to take care of myself. When he sleeps, I sleep. When he is in good care, I am happy.

This may not be the way we wanted life to turn out, but no matter how life rolls out for us, we always manage to find good people to help us along.

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