Stan Here:
I can recall three of four times when someone gave me directions and they told me the place I was looking for was on the "medical mile" in either GR, Ann Arbor, Cleveland of Minneapolis. I must tell you that as I have viewed the medical mile in Ann Arbor and Cleveland it is more like the medical 2 miles and while I have not seen Mayo clinic I understand it is even larger. Not sure why I wanted to start like this other than to say that what we have here is more like the medical 10 feet.
Debs world has been confined of late to a 10ft circumference between chair and hospital bed as even small movements have been overwhelmed by increasing weakness and pain.. The largest medical issue right now is swelling and pain in both legs and especially in the left leg that has some discoloration and more advanced swelling than I think I could have thought of before.
We want people to know that we have had over 4 years to prepare for this. I think Deb has always known that some of the worst medical times are yet to come and now we are in that stage. An outside observer might say that perhaps the best option is sedate to the point of sleeping all the time. I must tell you though that bright moments and smiles do happen as she interrelates with her caregivers (all who she knows well) and in this way this part of life has brought both value and quality. Also, the grandchildren bring moments of quality and today they are coming to see her and this is very important to her. So we are trying our best to provide those moments during this time.
All of this would not be possible without a very appreciated effort on the part of many friends who have shown support in a special way during this time.
So that is the update from the medical 10 feet. That 10 feet has with in it a strong person, strong friends, a strong will for life, and a strong vision of a future life beyond this one. In that way we are blessed even though at moments it is hard to remember those facts.
Stan
P.S. For the medical people out there the Methadone has been increased and the short term pain relief is something we are trying to decrease. We are looking for a spot of being "in the game" and controlling the pain as best possible. Yesterday Deb was able to visit with her caregiver in the afternoon for several hours and I think the changes in the meds have helped that
Saturday, February 13, 2016
Tuesday, February 9, 2016
Home
Stan Here:
In the Wizard of Oz Dorothy had to click her heels and say the words "There is no Place Like Home" several times. I am not sure about the heel kicking but Deb wanted to come home from Freedom Inn. She was allowed to do so with the provision that at least for a week there are always 2 people here to help and fortunately we have friends and family that are willing to assist us with this. I am the chosen 2nd person.
Deb is a fall risk and there is enough care needed now that it is hard to provide with one person. So for all intents and purposes walking is minimal but getting her up can be a challenge with one person. We had the option of continuing care at Freedom Inn but she wanted to come home real bad so we are trying that route. We had some different opinions in the family about what was best in this regard but Deb was having trouble with the idea of staying there. Freedom Inn did a god job but somehow being in any place of that nature takes a toll of its own in way that you cannot describe until you have experienced.
The swelling in her legs is a problem right now and she is having trouble and pain with her right leg especially It is very swollen and hard to the touch. So that has been causing a problem for the last few days. It seems like she will have a good day and then the next day a tough one so we are asking people who might wish to visit to call her number 616-299-2996 and somebody will answer that phone and provide some direction on that.
Her spirits seem better here at home so at least that brightens a pretty tough situation.
Stan
In the Wizard of Oz Dorothy had to click her heels and say the words "There is no Place Like Home" several times. I am not sure about the heel kicking but Deb wanted to come home from Freedom Inn. She was allowed to do so with the provision that at least for a week there are always 2 people here to help and fortunately we have friends and family that are willing to assist us with this. I am the chosen 2nd person.
Deb is a fall risk and there is enough care needed now that it is hard to provide with one person. So for all intents and purposes walking is minimal but getting her up can be a challenge with one person. We had the option of continuing care at Freedom Inn but she wanted to come home real bad so we are trying that route. We had some different opinions in the family about what was best in this regard but Deb was having trouble with the idea of staying there. Freedom Inn did a god job but somehow being in any place of that nature takes a toll of its own in way that you cannot describe until you have experienced.
The swelling in her legs is a problem right now and she is having trouble and pain with her right leg especially It is very swollen and hard to the touch. So that has been causing a problem for the last few days. It seems like she will have a good day and then the next day a tough one so we are asking people who might wish to visit to call her number 616-299-2996 and somebody will answer that phone and provide some direction on that.
Her spirits seem better here at home so at least that brightens a pretty tough situation.
Stan
Thursday, February 4, 2016
Correction
Stan Here:
I want to take a moment to correct something from the last post. Deb took a call yesterday and told me she was going to Holland Hospital. Like I mentioned she has been somewhat confused and this morning I found out that she was going to Freedom Inn which is a local skilled nursing facility here in Holland.
She is there now for a 5 day respite stay during which time they will try adjust the meds and build a plan to better care for her at home. We have been doing a good job here but she has had 3 falls and we will need to make some adjustments if in fact she can come home after the 5 days. That decision will also be made over the next days. Presently she does not have all of the pain and at least that is a good thing.
They are decreasing the methadone as it is felt that the dosage might be a little high right now. It is also believed that the confusion and falling are partly due to the methadone. The combination of that and the progression of the disease are perhaps both culprits of some of the recent problem. Deb has a black eye from one of the falls in our restroom.
It is very difficult to get her back on her feet after those falls so we had no choice but explore other options like the above. She cannot have visitors today and I will let you know if that changes.
My cell is 616-335-0195 if people have questions or suggestions. Not that much to do here and I would be glad talk if anybody has any ideas.
Stan
Wednesday, February 3, 2016
Fusion and Confusion
Stan Here:
Somehow years ago I became interested in Theoretical Physics. Problem is that when I get to about the third chapter of any of the books I start to not understand very much about what they are talking about. I does make me think more about the planets and light years and gravity and black holes and all that goes along with that.
In that frame I do not pretend to understand very much about the power of prayer, but I must tell you all that many of you have written and are praying for Deb's pain to be relieved and that has been granted. In our modern world and modern medicine it is always possible to medicate to the level of no pain. The problem of late however is that somehow the methadone they use has brought her to the point of being a touch beyond where they think she needs to be We have been visited by moments of confusion and deep sleep. Also some falls in attempts to do the basic daily functions. Compared to the pain though we are in a better spot. There was nothing worse than the pain she was feeling.
Hospice has recommended that Deb spend a day in the hospital (which is going to happen Thursday) to see if we can find a spot someplace in the middle. I think we will find that spot. So if all of our friends could pray for finding that balance it might work. The relief from pain worked but they worked a little too good. In any event we are in a better spot than a few days ago.
Newton's third law of motion is "For every action there is a equal and opposite reaction". So the action here has been to use methadone and the reaction has been a confused and sleepy life for Deb and little pain. I would suspect that the next action will be to decrease the dosage and we are hoping the reaction will be a better balance. If God can grant one thing we are hoping that Deb can somehow meet our 4th grandchild which is due to be born to our oldest son Ross and wife Rumy in April. Seems to us sort of light years away but it is possible and keeps hope going. And hope is a powerful thing from where we stand.
Stan
Somehow years ago I became interested in Theoretical Physics. Problem is that when I get to about the third chapter of any of the books I start to not understand very much about what they are talking about. I does make me think more about the planets and light years and gravity and black holes and all that goes along with that.
In that frame I do not pretend to understand very much about the power of prayer, but I must tell you all that many of you have written and are praying for Deb's pain to be relieved and that has been granted. In our modern world and modern medicine it is always possible to medicate to the level of no pain. The problem of late however is that somehow the methadone they use has brought her to the point of being a touch beyond where they think she needs to be We have been visited by moments of confusion and deep sleep. Also some falls in attempts to do the basic daily functions. Compared to the pain though we are in a better spot. There was nothing worse than the pain she was feeling.
Hospice has recommended that Deb spend a day in the hospital (which is going to happen Thursday) to see if we can find a spot someplace in the middle. I think we will find that spot. So if all of our friends could pray for finding that balance it might work. The relief from pain worked but they worked a little too good. In any event we are in a better spot than a few days ago.
Newton's third law of motion is "For every action there is a equal and opposite reaction". So the action here has been to use methadone and the reaction has been a confused and sleepy life for Deb and little pain. I would suspect that the next action will be to decrease the dosage and we are hoping the reaction will be a better balance. If God can grant one thing we are hoping that Deb can somehow meet our 4th grandchild which is due to be born to our oldest son Ross and wife Rumy in April. Seems to us sort of light years away but it is possible and keeps hope going. And hope is a powerful thing from where we stand.
Stan
Monday, February 1, 2016
A caucus of our own
Stan Here:
The way I understand these caucus things is that everyone in Iowa goes to a gym and they move from one corner to the other to be counted for a vote. Not sure I have that exactly right but somehow I think by the time each one of the candidates votes they will have enough money spent on them to fill a pretty big piggy bank. Also not sure why they pick Iowa first but I think it has something to do with professor Harold Hill. I mean if he could sell all those band instruments out there it must be true that these politicians think they can sell some of their big ideas out there. We will see what happens.
I know if we did a caucus here everyone we know would move to the side of the room that had a sign that said "No Pain" "No more Cancer" "Take up your Bed and Walk" and most everything else like that. And the fact is that today Deb had a slight relief from the deep levels of pain. I emphasize the word slight here. Anything is better though than the last week (or more) where it seemed like everyday things were getting worse.
Hospice has changed some of the pain meds. They have increased a few and taken away a few others. It seems like a fine line of keeping her alert and awake and it seems to me they are trying to find that illusive spot.
We did have a day yesterday of having the grandkids here with their parents. The old Deb smile was evident on a few occasions. Have not seen that all that much of late.
I am not sure what caucus sign we are standing under here. The challenge of this life is large though and the battle has some adventures with it that are really tough. Maybe that would be a good banner for her to stand under, "Really Tough". I would put my vote in for that one. Not far away from that maybe a banner could hang that says "Really Nice". Our friends and relatives could stand under that one. I know from all of our family the people under that one would get all of votes.
Stan
The way I understand these caucus things is that everyone in Iowa goes to a gym and they move from one corner to the other to be counted for a vote. Not sure I have that exactly right but somehow I think by the time each one of the candidates votes they will have enough money spent on them to fill a pretty big piggy bank. Also not sure why they pick Iowa first but I think it has something to do with professor Harold Hill. I mean if he could sell all those band instruments out there it must be true that these politicians think they can sell some of their big ideas out there. We will see what happens.
I know if we did a caucus here everyone we know would move to the side of the room that had a sign that said "No Pain" "No more Cancer" "Take up your Bed and Walk" and most everything else like that. And the fact is that today Deb had a slight relief from the deep levels of pain. I emphasize the word slight here. Anything is better though than the last week (or more) where it seemed like everyday things were getting worse.
Hospice has changed some of the pain meds. They have increased a few and taken away a few others. It seems like a fine line of keeping her alert and awake and it seems to me they are trying to find that illusive spot.
We did have a day yesterday of having the grandkids here with their parents. The old Deb smile was evident on a few occasions. Have not seen that all that much of late.
I am not sure what caucus sign we are standing under here. The challenge of this life is large though and the battle has some adventures with it that are really tough. Maybe that would be a good banner for her to stand under, "Really Tough". I would put my vote in for that one. Not far away from that maybe a banner could hang that says "Really Nice". Our friends and relatives could stand under that one. I know from all of our family the people under that one would get all of votes.
Stan
Thursday, January 28, 2016
In 1492
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
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
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
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