I know that many reading our blog have not wanted to contribute to the chaos, so I just want to let everyone know who may be contemplating an order, we are back and functioning. Its time to get ready for trek.
Thanks all for your concern and prayers.
Wednesday, February 11, 2009
Monday, February 9, 2009
Our new adventure
Its early Monday afternoon. The funeral was Saturday. I was very touched at the things that were said and the musical numbers. I planned the service, but I had no idea that at the response that I would have. I have had so many people helping me through the last week. I could never have made it through it all without so many people. Everyone has gone home. Mary is in school, although she never stopped going.
We now begin a new chapter in our lives. I keep trying to tell myself that it really shouldn't be that hard. Afterall, I was single for 38 years before I met Earl. But the reality is that Earl did come into my life and changed it forever. Going back is impossible. And now I am a single mom.
I have a mountain of stuff to sort through. There are many things that I definately want to keep. There are also many things that just need to be thrown away. However most of the stuff, falls into the really have to think about it category. I have had several people offer to help. I'm not sure that I am ready to tackle that yet. For the last eight years, Earl has done the bulk of the housework. I have to remember how to clean, do dishes and laundry. I know that it is just a matter of digging in. But then you add in the Earl factor. I can not do any of those things without thinking of him and then I start crying.
Then I wonder if I really did everything I could to keep him alive for as long as he could? Sometimes I don't feel sad at all. I actually catch myself laughing. Is that appropriate behavior for someone who's husband has just died? People ask and I tell them I'm doing okay. I think that I am and then in the next minute, I don't know if I am or not. I guess I have a lot of mental sorting as well as physical sorting.
I have orders that need to be completed. Work is therapy. Or is it escape?
We now begin a new chapter in our lives. I keep trying to tell myself that it really shouldn't be that hard. Afterall, I was single for 38 years before I met Earl. But the reality is that Earl did come into my life and changed it forever. Going back is impossible. And now I am a single mom.
I have a mountain of stuff to sort through. There are many things that I definately want to keep. There are also many things that just need to be thrown away. However most of the stuff, falls into the really have to think about it category. I have had several people offer to help. I'm not sure that I am ready to tackle that yet. For the last eight years, Earl has done the bulk of the housework. I have to remember how to clean, do dishes and laundry. I know that it is just a matter of digging in. But then you add in the Earl factor. I can not do any of those things without thinking of him and then I start crying.
Then I wonder if I really did everything I could to keep him alive for as long as he could? Sometimes I don't feel sad at all. I actually catch myself laughing. Is that appropriate behavior for someone who's husband has just died? People ask and I tell them I'm doing okay. I think that I am and then in the next minute, I don't know if I am or not. I guess I have a lot of mental sorting as well as physical sorting.
I have orders that need to be completed. Work is therapy. Or is it escape?
Tuesday, February 3, 2009
Earl's Funeral Plans
The funeral will be Saturday at 11:00 at the 10th Ward Church which is on the corner of 400 South and 800 East in Salt Lake City. There will be a viewing one hour before the service.
There will be a viewing on Friday evening from 6 to 8 at the Larkin Mortuary at 260 E South Temple, in Salt Lake City
Burial will be in the Lewiston City Cemetery in Lewiston Utah. We will be travelling there immediately following the service.
I want to thank all for their kind words, thoughts and prayers throughout the day. My phone hasn't stopped ringing. So many people care so much.
There will be a viewing on Friday evening from 6 to 8 at the Larkin Mortuary at 260 E South Temple, in Salt Lake City
Burial will be in the Lewiston City Cemetery in Lewiston Utah. We will be travelling there immediately following the service.
I want to thank all for their kind words, thoughts and prayers throughout the day. My phone hasn't stopped ringing. So many people care so much.
Earl's passing
Earl passed away at approximately 1:00 a.m. this morning, February 3, We haven't had time to make funeral arrangements or anything. I will post them when I know.
Saturday, January 31, 2009
Saturday January 31, 2009
We are receiving lots of help. We have started hospice. They do many things. I am mostly not emotional. I'm sure when the time comes to morn, I will morn. I do cry some everyday. My conversations with Earl have changed. In many ways it is like he is leaving on a trip. We talk about friends that he will see. We saw a monument of Brigham Young and Joseph Smith today and I wondered if Earl is going to get a chance to meet them. There have been a few people from the wagon train who have already passed on and we have had conversations about them.
In addition to hospice, we have friends that come in and help. One of the ladies from the ward, came yesterday and cleaned my kitchen. She is from Brazil. My kitchen hasn't been that clean since I don't know when. We have some other friends coming in today to help me move some furniture around to make it easier for Earl to move around when he needs to.
My cousin Sharon may come over for a couple of weeks. She is a nurse and has done home care before so she would come and help me when hospice isn't here because they can't be here all the time. I have asked if one of the Service Missionaries from the ward could sit with Earl while I go to at least Sacrament meeting tomorrow. They are in the process of releasing me from the library but this all changed so fast they haven't had time to do it yet. They were going to release me anyway we just thought we had a little more time.
I need to find a baby food mill. Earl gets hungry, but sometimes doesn't have the energy to chew a lot. He doesn't eat very much, but I refuse to make him eat bottled baby food.
Earl's son, Jacob, is in the process of getting a 2-week leave from Iraq to see his Dad. This is a miracle all by itself. They haven't spoken in years.
In addition to hospice, we have friends that come in and help. One of the ladies from the ward, came yesterday and cleaned my kitchen. She is from Brazil. My kitchen hasn't been that clean since I don't know when. We have some other friends coming in today to help me move some furniture around to make it easier for Earl to move around when he needs to.
My cousin Sharon may come over for a couple of weeks. She is a nurse and has done home care before so she would come and help me when hospice isn't here because they can't be here all the time. I have asked if one of the Service Missionaries from the ward could sit with Earl while I go to at least Sacrament meeting tomorrow. They are in the process of releasing me from the library but this all changed so fast they haven't had time to do it yet. They were going to release me anyway we just thought we had a little more time.
I need to find a baby food mill. Earl gets hungry, but sometimes doesn't have the energy to chew a lot. He doesn't eat very much, but I refuse to make him eat bottled baby food.
Earl's son, Jacob, is in the process of getting a 2-week leave from Iraq to see his Dad. This is a miracle all by itself. They haven't spoken in years.
Wednesday, January 28, 2009
Where we are
This has not been a good week. Starting Thursday, Earl has taken a bad fall each day. His ammonia is really high. His breathing became irregular Monday morning about 3:00. Thanks to good neighbors, I took Earl to the ER while Kathy stayed with Mary. As suspected, his ammonia had gone up even more. The medicine that they give to bring it back down, causes intense diarrhea. Earl doesn't like it (who would?) so it is hard to get him to take it. Generally liver disease patients are on it to keep their ammonia in check. Earl has been on something else because he is so sensitive to it. Now he has no choice. However, he has been on it for two days with no apparent change.
We saw the oncologist yesterday. The long and short of it is that Earl may only have weeks left. The uncontrollable ammonia is yet another indication that he is suffering liver failure. We are starting Community Nursing Services today.
I wasn't expecting the end to come so quickly. Earl seemed to be doing really well during our trip to Seattle. I thought for sure when we got back that his bilirubin would be down when we got back. The bilirubin hasn't come down and the ammonia has risen. Earl doesn't sleep much. Trying to get him to stay in bed at night is a challenge. When we were at the doctor a week ago, Earl mentioned that he was afraid that he would die in his sleep without being able to say goodbye. Turns out that generally when you have liver failure, you just go to sleep and that's it. I think that Earl is avoiding sleep because he doesn't want to die. I don't blame him. I would be the same way I think. They have at least temporarily taken him off his chemo pill so we can find out if it is, somehow, causing the raise in the ammonia.
I talked to Mary about all this yesterday. Her first response was that she doesn't want a new daddy. I told her that it took me so long to find her daddy and I really doubted that we would have to worry about that any time soon. Later when we talked about the good and the bad of her day she said that the good part was painting Wendy's snow. The bad part was finding out that her dad is going to die. I have been wondering if she was really comprehending all of this, I guess she does in her own 7 year old way. Meanwhile, she is sad that because he is so sick and has no immune system, she doesn't get to have friends come over. We didn't let her have many friends over as it was, now it is even harder because she can't have any play dates at our house.
Each day seems to bring new questions and new answers. We are thankful for each day that we have with Earl. I really wanted to have a wagon train reunion for him before he got too sick, now I'm not sure how we could ever get that to happen. Our mailing list is buried on a zip disc and we no longer have a zip drive. I don't know how many of the addresses would even be valid anymore. We haven't mailed out a Mormon Trail News in years.
We saw the oncologist yesterday. The long and short of it is that Earl may only have weeks left. The uncontrollable ammonia is yet another indication that he is suffering liver failure. We are starting Community Nursing Services today.
I wasn't expecting the end to come so quickly. Earl seemed to be doing really well during our trip to Seattle. I thought for sure when we got back that his bilirubin would be down when we got back. The bilirubin hasn't come down and the ammonia has risen. Earl doesn't sleep much. Trying to get him to stay in bed at night is a challenge. When we were at the doctor a week ago, Earl mentioned that he was afraid that he would die in his sleep without being able to say goodbye. Turns out that generally when you have liver failure, you just go to sleep and that's it. I think that Earl is avoiding sleep because he doesn't want to die. I don't blame him. I would be the same way I think. They have at least temporarily taken him off his chemo pill so we can find out if it is, somehow, causing the raise in the ammonia.
I talked to Mary about all this yesterday. Her first response was that she doesn't want a new daddy. I told her that it took me so long to find her daddy and I really doubted that we would have to worry about that any time soon. Later when we talked about the good and the bad of her day she said that the good part was painting Wendy's snow. The bad part was finding out that her dad is going to die. I have been wondering if she was really comprehending all of this, I guess she does in her own 7 year old way. Meanwhile, she is sad that because he is so sick and has no immune system, she doesn't get to have friends come over. We didn't let her have many friends over as it was, now it is even harder because she can't have any play dates at our house.
Each day seems to bring new questions and new answers. We are thankful for each day that we have with Earl. I really wanted to have a wagon train reunion for him before he got too sick, now I'm not sure how we could ever get that to happen. Our mailing list is buried on a zip disc and we no longer have a zip drive. I don't know how many of the addresses would even be valid anymore. We haven't mailed out a Mormon Trail News in years.
Friday, January 23, 2009
New this week
Earl has been on his chemo for about 10 days now. We have just increased his dose today to half of the full dose. I would imagine if it does okay at this level we will be at the full dose by the end of next week.Wednesday we saw the symptom management doctor for the first time. She had a lot of good information for us. She talked to us about pain and the levels of pain. If you have been to the Emergency Room lately, you might be familiar with perceived pain levels. Zero being no pain. 10 is the worst pain you can imagine. In the lower levels of pain the brain can be drawn away from the pain only feeling pain when there is nothing to draw the attention away from the pain. At the upper levels of pain you need to have stronger pain killers to help the brain not dwell on it. Untreated, high levels of pain can break down the immune system and in the case of cancer, can cause the tumors to grow more quickly. Also some pain killers are not effective when your liver isn't functioning properly.
The doctor also recommended that Earl get his abdomen tapped. Earl is retaining water in his abdomen. His belly is expanding. It hurts. So today we had that done. They drained off 3 liters of fluid. No wonder his belly was tight. We had labs done earlier in the week but the lab didn’t do all that we needed to have done so we also had new labs done today. His bilirubin in down but still higher than they want it do be to do Theraphere treatment. The ammonia in his system is really high. We will be working to get that down this week-end. When the ammonia is high, it causes Earl to be a little dingy as far as thought process. It also causes him to be very tired. His body make involutary movements. If it gets too high, it can cause him some serious brain damage, even death so we don't want the ammonia to be high.
Many have expressed concern for me in my role as Earl’s main care giver. I am touched by other’s willingness to help us. I have been thinking about things that I can ask for help with. It has been suggested that I list everything that I do in an average day, then mark off the things that only I can do. Finally, prioritize what is left. Some things may not really be that important. I have been trying to make my list the last couple of days. Although this approach makes it easier, it is still a difficult task. Why do we have such a difficult time asking for help but are so willing to offer to help others?
The doctor also recommended that Earl get his abdomen tapped. Earl is retaining water in his abdomen. His belly is expanding. It hurts. So today we had that done. They drained off 3 liters of fluid. No wonder his belly was tight. We had labs done earlier in the week but the lab didn’t do all that we needed to have done so we also had new labs done today. His bilirubin in down but still higher than they want it do be to do Theraphere treatment. The ammonia in his system is really high. We will be working to get that down this week-end. When the ammonia is high, it causes Earl to be a little dingy as far as thought process. It also causes him to be very tired. His body make involutary movements. If it gets too high, it can cause him some serious brain damage, even death so we don't want the ammonia to be high.
Many have expressed concern for me in my role as Earl’s main care giver. I am touched by other’s willingness to help us. I have been thinking about things that I can ask for help with. It has been suggested that I list everything that I do in an average day, then mark off the things that only I can do. Finally, prioritize what is left. Some things may not really be that important. I have been trying to make my list the last couple of days. Although this approach makes it easier, it is still a difficult task. Why do we have such a difficult time asking for help but are so willing to offer to help others?
Subscribe to:
Posts (Atom)