Stan Here,
I have been having some trouble getting good sleep here. Last night I found myself thinking about the old phrase " In 1492 Columbus sailed the ocean blue". I found myself thinking about how he and the sailors embarked on a journey to find a new land in a world where they thought the world was flat.
There are some parts about this that describe the situation we are in right now. Mostly we are sort of on uncharted ground here. There is no part of this that both of us do not know the final result of but at the same time the quest for life is something that has a pull that cannot be put down. We are visited by days of adjusting meds, confusion, pain, swelling, and about every other thing you might be able to think of as it relates to options and issues that relate to human life.
There have been times of late where the pain has been so strong that Deb has expressed the desire for a peaceful end. At the same time there have been moments of holding a grandchild on the lap that generates the desire to keep on going. So it has been difficult to determine the correct path on this.
One thing that has been important and appreciated is the many e-mails and greetings that you have sent. She can read them, We read them to her also but she is not able to respond so please understand this.
Presently we are trying to make her comfortable by the transition to the pain med of Methadone but this has been sort of a tough venture. We are told that at the end of the week she will be able to enjoy a period of time of being "with it and the same old Deb for a period of time". So the ship has has not sailed off of the end of the world yet and we have perhaps a little more time but it is a tough journey.
If you are praying people please pray for some relief from a level of pain that is sort of off of the charts. It means a lot to her that people are with her.
Stan
Thursday, January 28, 2016
Tuesday, January 26, 2016
Stuck in the Mud
Stan here:
We have all been stuck in the snow. Salt, shovels and human pushes eventually solve those problems but somehow we sort of got stuck in the mud here for a few days and no matter what we did we were not making progress.
Due to some of the difficulties of transitioning some of the drugs we made a decision last week to have Deb be cared for at a local facility. On that day we decided that Deb was having some confusion problems and some response problems so Hospice decided it would be best to get her outside of the home to help with the care.
Without pointing fingers we had problems at the care facility. For some reason they just could not seem to figure out how important it was to get the medications for pain on time and the consequence was more pain than she had here at home so we did kind of a "jailbreak" and decided to come home and just do the best we could. So today we are attempting to transition from the Morphine to the Methadone right here at home. So far that seems to be going good. I do not have that many other details right now as things are changing now almost daily but I did want people to know that Deb is home.
I am not sure either how to really explain how this all happened but I do know that the situation as it relates to pain has a small window of getting the stuff needed for relief. More later but for now we are doing a good job of this at home.
Stan
We have all been stuck in the snow. Salt, shovels and human pushes eventually solve those problems but somehow we sort of got stuck in the mud here for a few days and no matter what we did we were not making progress.
Due to some of the difficulties of transitioning some of the drugs we made a decision last week to have Deb be cared for at a local facility. On that day we decided that Deb was having some confusion problems and some response problems so Hospice decided it would be best to get her outside of the home to help with the care.
Without pointing fingers we had problems at the care facility. For some reason they just could not seem to figure out how important it was to get the medications for pain on time and the consequence was more pain than she had here at home so we did kind of a "jailbreak" and decided to come home and just do the best we could. So today we are attempting to transition from the Morphine to the Methadone right here at home. So far that seems to be going good. I do not have that many other details right now as things are changing now almost daily but I did want people to know that Deb is home.
I am not sure either how to really explain how this all happened but I do know that the situation as it relates to pain has a small window of getting the stuff needed for relief. More later but for now we are doing a good job of this at home.
Stan
Saturday, January 23, 2016
A better Letter
Stan here:
Many of you responded to my request that you e-mail Deb and I thank you for that. Today around 2PM it looked like she was experiencing some relief from the pain. Deb and I watched a movie today. It had a few humorous lines and as they hit the screen I saw the old smile on her face and frankly that is the first time I have seen this in a while.
We have had some trouble getting the communications figured out between Hospice and the care facility she is in but today we had some good meetings to get everyone on the same page. I am not sure why this has to be hard and sometimes it would be easy to do some finger pointing but I think we have it figured out. We are going to attempt to bring Deb home for lunch on Sunday. All the family is going to do what we can to make this happen.
It is very difficult to tell if the problems with pain could be controlled with medication or if they are due to the progression of the disease. And there is a fine line of controlling pain to the level that she can be conscious and aware compared to be knocked out and sleeping all of the time. It is our first experience with this. So it is difficult to determine the correct path on this.
When I arrived at the room today she was enjoying a time with Mieke and her daughter so my guess is that our best path right now is to work on the pain issue. We are getting there but even though the pain might be a little less it is still rather strong. As many of you know Deb is a tough soldier so I know when she says she is in pain that it really has to hurt. It mostly comes from her midsection area and frankly most of the meds do not touch it all that much.
It was however good today to see the smile return for a few moments so it is better than before and that is a blessing.
Stan
Many of you responded to my request that you e-mail Deb and I thank you for that. Today around 2PM it looked like she was experiencing some relief from the pain. Deb and I watched a movie today. It had a few humorous lines and as they hit the screen I saw the old smile on her face and frankly that is the first time I have seen this in a while.
We have had some trouble getting the communications figured out between Hospice and the care facility she is in but today we had some good meetings to get everyone on the same page. I am not sure why this has to be hard and sometimes it would be easy to do some finger pointing but I think we have it figured out. We are going to attempt to bring Deb home for lunch on Sunday. All the family is going to do what we can to make this happen.
It is very difficult to tell if the problems with pain could be controlled with medication or if they are due to the progression of the disease. And there is a fine line of controlling pain to the level that she can be conscious and aware compared to be knocked out and sleeping all of the time. It is our first experience with this. So it is difficult to determine the correct path on this.
When I arrived at the room today she was enjoying a time with Mieke and her daughter so my guess is that our best path right now is to work on the pain issue. We are getting there but even though the pain might be a little less it is still rather strong. As many of you know Deb is a tough soldier so I know when she says she is in pain that it really has to hurt. It mostly comes from her midsection area and frankly most of the meds do not touch it all that much.
It was however good today to see the smile return for a few moments so it is better than before and that is a blessing.
Stan
Thursday, January 21, 2016
Update that is not all that great.
Stan Here:
We had a turns of events here in the last few days. Deb woke up this morning with a level of pain that was off of the charts. We called Hospice and today we had to opt to have her care be given by one of the local facilities who can provide the care and pain management needed. She is now at the Lakeside care facility on 40th street here in Holland.
A decision has been made to change the main med for pain from morphine to methadone. This transition involves slowly decreasing the morphine and increasing the methadone but it all has to be done under the supervision of professionals. This process will start on Monday and it will take about 2 weeks according to what we are being told. If it is not done this way the body can have withdrawal symptoms which are very harsh and worse than the pain itself. We do not want that so we have to go through this to get the pain under better control.
Many of you have asked what help they can give. One thing I can think of right now is that these care facilities can be somewhat depressing. They have all of the feel of "not the place you want to be". Most all of you know that Deb treasures her friends and at least for now visits seem to take a lot out of her. She does however like staying in touch and perhaps if people have the time she likes to read e-mail. She is not always able to respond so please understand that. We are in for a few tough weeks and the e-mail thing is the only thing I can think of right now. deb.hoksbergen@gmail.com
I am going to go tomorrow morning and bring a few plants and pictures from our home to her room to make it feel a little warmer. I will also update on when and if visits would work better than they would now. In all of this Deb has a tradition of reading every word of every card, every email, and any type of connection she can have with the people she knows. She is touched by every thing that comes her way like this.
Stan
We had a turns of events here in the last few days. Deb woke up this morning with a level of pain that was off of the charts. We called Hospice and today we had to opt to have her care be given by one of the local facilities who can provide the care and pain management needed. She is now at the Lakeside care facility on 40th street here in Holland.
A decision has been made to change the main med for pain from morphine to methadone. This transition involves slowly decreasing the morphine and increasing the methadone but it all has to be done under the supervision of professionals. This process will start on Monday and it will take about 2 weeks according to what we are being told. If it is not done this way the body can have withdrawal symptoms which are very harsh and worse than the pain itself. We do not want that so we have to go through this to get the pain under better control.
Many of you have asked what help they can give. One thing I can think of right now is that these care facilities can be somewhat depressing. They have all of the feel of "not the place you want to be". Most all of you know that Deb treasures her friends and at least for now visits seem to take a lot out of her. She does however like staying in touch and perhaps if people have the time she likes to read e-mail. She is not always able to respond so please understand that. We are in for a few tough weeks and the e-mail thing is the only thing I can think of right now. deb.hoksbergen@gmail.com
I am going to go tomorrow morning and bring a few plants and pictures from our home to her room to make it feel a little warmer. I will also update on when and if visits would work better than they would now. In all of this Deb has a tradition of reading every word of every card, every email, and any type of connection she can have with the people she knows. She is touched by every thing that comes her way like this.
Stan
Wednesday, January 20, 2016
What do we Know and What we do not Know
Stan Here,
I am sure that almost everyone has experienced some sort of thing where at some point you are at a camp someplace in younger years and somebody asked you to shoot a arrow at a target. I recall those days. The types of bows and arrows they gave you sort of sent those arrows in a way that nobody would ever be hurt. They sort of followed the laws of Newton as they arched to the the targeted bail of straw.
And that is analogous to what we have here. But the arrows have sort of sharp point to them. They come in the form of delivering sharp pain, they arch their way in to a body that is not able to take much more and they come with a poison tip which arrive at spot in a way that really can hurt.
And that folks is exactly what we face here. As the Hospice people have visited a question they often ask is on a one to ten scale how might you describe the pain. I have not witnessed a answer of anything less than a seven. Long and short, we are in trouble here and the pain is sharp and consistent.
One of the most interesting things that happens here is that a different person wakes up every day. Good nights and bad. From a husbands stand point the level of meds are stunning. While I know that others have faced this I would not be honest if I did not say that this is a stunning event. In that same frame is a respect for the quest of life and the desire to get out and do a few things. We have experienced a week or so of "getting out".
Deb has attended most all of the "January Series". We went to dinner with some friends this past weekend, we attended our church, she still knows how to get mad at me (which is a good sign) and life on some fronts goes on as normal.
Most of all though is that our friends have stayed with us in this most difficult period of life. So we do not know the path this will take. We do see the destiny and the related emotion that comes with this all. What we do know is that in whatever path this might take we revel in the support of our friends. Deb said it best the other day, "It is over the top"
We thank you all,
Stan
I am sure that almost everyone has experienced some sort of thing where at some point you are at a camp someplace in younger years and somebody asked you to shoot a arrow at a target. I recall those days. The types of bows and arrows they gave you sort of sent those arrows in a way that nobody would ever be hurt. They sort of followed the laws of Newton as they arched to the the targeted bail of straw.
And that is analogous to what we have here. But the arrows have sort of sharp point to them. They come in the form of delivering sharp pain, they arch their way in to a body that is not able to take much more and they come with a poison tip which arrive at spot in a way that really can hurt.
And that folks is exactly what we face here. As the Hospice people have visited a question they often ask is on a one to ten scale how might you describe the pain. I have not witnessed a answer of anything less than a seven. Long and short, we are in trouble here and the pain is sharp and consistent.
One of the most interesting things that happens here is that a different person wakes up every day. Good nights and bad. From a husbands stand point the level of meds are stunning. While I know that others have faced this I would not be honest if I did not say that this is a stunning event. In that same frame is a respect for the quest of life and the desire to get out and do a few things. We have experienced a week or so of "getting out".
Deb has attended most all of the "January Series". We went to dinner with some friends this past weekend, we attended our church, she still knows how to get mad at me (which is a good sign) and life on some fronts goes on as normal.
Most of all though is that our friends have stayed with us in this most difficult period of life. So we do not know the path this will take. We do see the destiny and the related emotion that comes with this all. What we do know is that in whatever path this might take we revel in the support of our friends. Deb said it best the other day, "It is over the top"
We thank you all,
Stan
Sunday, January 10, 2016
Musical. unusual. and Realistical.
Stan here,
I am not sure why I always find the need to put some sort of rhyme to the titles, But allow me to do so. My mind sort of goes this way. It is interesting to me that in the course of life we all find adventures that bring us to a spot in life that words do not find the proper definition of the the spot that we reach.
The spot we are on right now is the very fact that we have a situation that requires a great degree of care and involves some degree of confusion. It has within the picture some optimism. Recently Deb has had 3-4 days of being able to get out and do some things. As we talk one of her friends is taking her to the January series which is a group of talks sponsored by a local college. She always has dwelt in the feelings that come from the smart people and I guess that will continue till the end.
Can I say this? We have been blessed by some good days. We have been blessed by some good friends who have stayed overnight and during the day to help with the meds. Also, some of the finer meals we have experienced. I said to Deb a few days ago that one thing I would never understand is how many of our friends do not weigh 350 pounds at least. Culinary skills around here have never been at the top of the list but the fine thought and preparation of some of the meals and treats we have seen and are appreciated in a special way. The end of life has a gentle exit ramp. The friends we have have shown me in a special way how it is a gentle turn. I cannot thank you all enough.
Deb pounded out on the piano a rendition of the songs she knows. Let them ring in a special way. It was so good to hear this again.The days of normalcy are a treasure, the days of pain are a pain, the days of music are a blessing and a gift. Through this all though are some strong days of late. The best we have seen in while.
Thanks to all.
Stan the Man
I am not sure why I always find the need to put some sort of rhyme to the titles, But allow me to do so. My mind sort of goes this way. It is interesting to me that in the course of life we all find adventures that bring us to a spot in life that words do not find the proper definition of the the spot that we reach.
The spot we are on right now is the very fact that we have a situation that requires a great degree of care and involves some degree of confusion. It has within the picture some optimism. Recently Deb has had 3-4 days of being able to get out and do some things. As we talk one of her friends is taking her to the January series which is a group of talks sponsored by a local college. She always has dwelt in the feelings that come from the smart people and I guess that will continue till the end.
Can I say this? We have been blessed by some good days. We have been blessed by some good friends who have stayed overnight and during the day to help with the meds. Also, some of the finer meals we have experienced. I said to Deb a few days ago that one thing I would never understand is how many of our friends do not weigh 350 pounds at least. Culinary skills around here have never been at the top of the list but the fine thought and preparation of some of the meals and treats we have seen and are appreciated in a special way. The end of life has a gentle exit ramp. The friends we have have shown me in a special way how it is a gentle turn. I cannot thank you all enough.
Deb pounded out on the piano a rendition of the songs she knows. Let them ring in a special way. It was so good to hear this again.The days of normalcy are a treasure, the days of pain are a pain, the days of music are a blessing and a gift. Through this all though are some strong days of late. The best we have seen in while.
Thanks to all.
Stan the Man
Saturday, January 2, 2016
The family glue
Hello All,
Mieke here...I feel that it is time to update. I am here with mom and Lorelei, both are sleeping. Mom is in the recliner and Lor is tucked in the hospital bed that has become a piece of furniture in the living room. Please excuse me as I allow a bit of emotion to come through this post, sometimes I just post facts, but today I'm feeling like I want to share my heart.
Mom is really sick. Some days she seems better and I get hopeful that this is the "new normal" and we can enjoy time together. I talk with her about all the stuff that I would normally share in the old days. About my recent shopping finds, how my friends are doing, how long Lor slept through the night. Then other days I come over to find her much sleepier and hardly able to respond to questions. Saying this journey has its ups and downs is a major understatement.
Earlier today Ross and Rumy left with dad for the airport. It was emotional for both to hug mom and say goodbye, hoping that this would not be the last time they would see her. Unfortunately, we just don't know. Our visit with them included good laughs, lots of time with all three kids (Ainsley, George, and Lorelei) and plenty of reminiscing about times we all wish we could go back to. It is hard to enjoy time together when mom is sick, because it turns out that moms are what hold a family together. They coordinate the meals, make beds, wrap the presents, make sure everyone is happy, and insist on ONE good family picture. When this person is not present or too weak to fulfill these needs, life just doesn't function like it should. My brothers, dad, and I try as hard as we can to keep up everything that is void because of mom's condition but...we don't even come close. Moms...know how much your family needs you and appreciates you even if they don't express it.
I am experiencing something that I'm sure many do when someone they love is close to death. I look around and see everything that reminds me of mom. I am fortunate to have spent much time with mom these past few years and as a result, my house, my yard, my classroom all have reminders everywhere I look. My headboard was painted by mom this summer after we picked up the old shutters from a house nearby, Lor's nursery doesn't contain a single picture/mirror/decoration that mom didn't have a part in, my classroom's bulletin board fabric was stapled in with care after mom insisted that we iron the 10+ yards or chevron to make them "perfect" for my 4th graders. I love that my life and surroundings have been so influenced by my mom, but I get a major heartache when I think about those memories and the coming absence of them in my life. Sometimes I go to bed and Aaron looks over and sees my crying (once again) and I express to him, "I'm just not ready to lose her". He always replies something like, "Meek, you're not ever going to lose her, you are your mother. You act like her, talk like her, sing like her, and raise our baby like she raised you." Thank goodness I have him to remind me of this important truth. My mom will always live on in me and in Ross and Alden.
I was cleaning up a bit in the kitchen today and something fell off the fridge. A wedding invite for mom's close friend's son. I picked it up and looked at the date, January 2. Uh oh. I brought it over to mom and asked her if she RSVPed she was going. Her face fell...yes, she had planned to go. No...she will not be able to make it today. Another life event that she was so excited for that she must miss. I'm not sure I will ever understand why my mom has to go through ovarian cancer and all the pain and heartache it brings...for now I will appreciate how strong she is and has taught me to be. I will try my best to take care of her and help dad as he deals with the loss of his life partner.
Please understand how hard it is to communicate back to everyone as they reach out to her. I try to read her texts to her and answer emails...but I don't always succeed with all avenues of communication. Please use this website to sign up for ways to help mom as needed. I just created a daily task of checking in around 2pm. Go to the calendar and click on the task to sign up.
https://my.lotsahelpinghands.com/community/debhoksbergen/home
Much love, Mieke
Mieke here...I feel that it is time to update. I am here with mom and Lorelei, both are sleeping. Mom is in the recliner and Lor is tucked in the hospital bed that has become a piece of furniture in the living room. Please excuse me as I allow a bit of emotion to come through this post, sometimes I just post facts, but today I'm feeling like I want to share my heart.
Mom is really sick. Some days she seems better and I get hopeful that this is the "new normal" and we can enjoy time together. I talk with her about all the stuff that I would normally share in the old days. About my recent shopping finds, how my friends are doing, how long Lor slept through the night. Then other days I come over to find her much sleepier and hardly able to respond to questions. Saying this journey has its ups and downs is a major understatement.
Earlier today Ross and Rumy left with dad for the airport. It was emotional for both to hug mom and say goodbye, hoping that this would not be the last time they would see her. Unfortunately, we just don't know. Our visit with them included good laughs, lots of time with all three kids (Ainsley, George, and Lorelei) and plenty of reminiscing about times we all wish we could go back to. It is hard to enjoy time together when mom is sick, because it turns out that moms are what hold a family together. They coordinate the meals, make beds, wrap the presents, make sure everyone is happy, and insist on ONE good family picture. When this person is not present or too weak to fulfill these needs, life just doesn't function like it should. My brothers, dad, and I try as hard as we can to keep up everything that is void because of mom's condition but...we don't even come close. Moms...know how much your family needs you and appreciates you even if they don't express it.
I am experiencing something that I'm sure many do when someone they love is close to death. I look around and see everything that reminds me of mom. I am fortunate to have spent much time with mom these past few years and as a result, my house, my yard, my classroom all have reminders everywhere I look. My headboard was painted by mom this summer after we picked up the old shutters from a house nearby, Lor's nursery doesn't contain a single picture/mirror/decoration that mom didn't have a part in, my classroom's bulletin board fabric was stapled in with care after mom insisted that we iron the 10+ yards or chevron to make them "perfect" for my 4th graders. I love that my life and surroundings have been so influenced by my mom, but I get a major heartache when I think about those memories and the coming absence of them in my life. Sometimes I go to bed and Aaron looks over and sees my crying (once again) and I express to him, "I'm just not ready to lose her". He always replies something like, "Meek, you're not ever going to lose her, you are your mother. You act like her, talk like her, sing like her, and raise our baby like she raised you." Thank goodness I have him to remind me of this important truth. My mom will always live on in me and in Ross and Alden.
I was cleaning up a bit in the kitchen today and something fell off the fridge. A wedding invite for mom's close friend's son. I picked it up and looked at the date, January 2. Uh oh. I brought it over to mom and asked her if she RSVPed she was going. Her face fell...yes, she had planned to go. No...she will not be able to make it today. Another life event that she was so excited for that she must miss. I'm not sure I will ever understand why my mom has to go through ovarian cancer and all the pain and heartache it brings...for now I will appreciate how strong she is and has taught me to be. I will try my best to take care of her and help dad as he deals with the loss of his life partner.
Please understand how hard it is to communicate back to everyone as they reach out to her. I try to read her texts to her and answer emails...but I don't always succeed with all avenues of communication. Please use this website to sign up for ways to help mom as needed. I just created a daily task of checking in around 2pm. Go to the calendar and click on the task to sign up.
https://my.lotsahelpinghands.com/community/debhoksbergen/home
Much love, Mieke
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