We Come To a Time

The time has arrived to close the story of a long journey. The story of a life and the recording of the events that led to the end of a life. This last entry has perhaps a greater level of emotion than any of the others. It was always difficult to write these. We did so to keep people informed, with the secondary purpose of transmitting some of the emotion that was difficult to tell over and over to people that showed interest in the whole situation. It was mentioned to us not to close until the birth of our 4^th grandchild and that happened on April 26^th.

This part of this post was fun to write. Ross and Rumy are now proud parents of a nice little baby that is named Oliver James. This young man weighed 6 lbs and 12 oz and 20 inches long. He came out after Rumy worked about 1 ½ days to deliver him and he did so without the need for a “section”. I am told by Ross he looked around for a few seconds with a look of “what just happened”, then opened his mouth wide and let out one of the stronger cries that even trumpet players can behold. In short order he was placed in his mothers arms and soon settled in to enjoy his first day of life. It appears to me that this young man might be quite well dressed. The people in the church Ross and Rumy serve have seen to that. It looks to me that he might also be quite well protected in the car, might sleep well in the crib and might be warm in the blankets mostly due to the christian love shown by the people in that church.

So today we come to the time to close, and a beginning of a new chapter. The past documented by over 4 years of blogging and kept open for this chapter. The future perhaps picked up on some future writing not determined yet. All three of our children now have children. There is no doubt that Deb would have been proud to see this last one but as one friend suggested perhaps that is not so far out of the question. I had a special feeling as I saw this young man for the first time and with it a sense of her presence. No proof just a sense. And that was enough for me.

I did have the chance to review some of the writings. My daughter suggested over 4 years ago that we do this thing called a blog and I kind of knew what that was. As I read back a little it has about every human emotion that can be experienced. The repeated adjectives of love, care, endurance, pain, perseverance, all flow out of the writings no matter who wrote them. The experience of new life and a death are reported. The feelings of smiles and tears are reported. About every element of human emotion are held someplace in the 300 or so blog posts.

The feelings of loss are slowly and carefully being replaced by feelings of thanks and respect for a life well done. The feelings of thanks are coming through like a sun rising. The feelings of pride are there as they relate to a life lived with vigor and love. The witness of courage as death was imminent was the exclamation mark of facing the day that not one of us wishes to face but all of us must at some point do so.

Allow me to mention a few things I am thankful for and proud of. We designated Beacon Ministries and Hospice as causes for memorial. In each of these cases I am told that the gifts were just stunning and I thank all who helped with this. Deb's brother Jim worked very hard to give his sister the service she deserved (his funeral home provided the service). Deb's sister helped me with the tough parts of dealing with clothing and personal things and did so in a way that my home today keeps some of the memory but passes on many things that others can use Deb's sister in law Nancy helped us with so many things and never gave up in that help over this entire journey. Deb's brother Ken and wife Shelly, just last weekend planted new trees on the north property which will be available to the family for Christmas Trees in about seven years or so in his sisters memory. Gift from her parents aided with some of the financial demands that come with a long term disease.

Perhaps for me the most stunning thing is how Deb's friends stayed with the situation and helped. If life needs to close I can think of no other way that people could show care at a deeper level. It is hard to mention each one and I am still in the process of writing thank you notes but I will get them all done.

Somehow each day gets a little better for me. Slowly but surely the feeling and good memories outweigh the tears that come with an event such as this death. I never really knew what to do and how to report some things. It seemed to me that the events of this illness were always very serious but somehow she put a good of  face on it in public to the point that many would say “I can't see that much wrong". That was different at home many times. She was granted one year right in the middle of the whole thing of somewhat normal activities. She was able to cross off many things on a bucket list she made 4 years ago and able to purge through pain that at times went beyond words I can find.

This little Oliver guy has something I have not seen before. I almost seems to me he has kind of a sharp look in his eye. Sometimes babies have about a week before you know what they see. Perhaps what you are hearing here is just a proud grandpa that thinks Oliver sees something. But I want to use this thought to close the blog.

Deb always had a sharp look in her eye. A keen eye and heart for a friend, a keen ear for music, a keen sense for family, a keen sense of a bargain, a keen love for people that needed love. It never really came out that much at the end but along with the above came a pretty strong sense of humor. Rooted inside of all of this was a zest for life that had a contagious quality. And that is how the Diary of Deb must now come to a close. Thank you all for following along. We could always feel the love and the prayers. They were a gift from God.

Here are a few pictures of Oliver James.

Oliver James Hoksbergen- April 26- 6 lbs 12 oz, 20 inches

Ross and Oliver post birth-here we go!

Stan drove in all the way from Michigan!

Rumyana is MUCH happier now than a day ago, especially with Great Grandma nearby

Great Grandma Shirley and a biiig yawn! you worked hard little guy, put your feet up for a while!

Ok Dad, is this what you meant!?

I think I'll just take a nap right here, ok Mom?

A personal reflection from Stan

I want to write to all of you guys.I am in the process of writing many thank you notes and I am almost finished and will put them in the mail.  One of the problems when you are married to Deb is that many thank you notes are going to be in the the picture. Frankly though this has provided for me some therapy and instead of a chore it has been a joy.

Like I said last time I am going to close down this blog, but a good friend suggested I not do so until Ross and Rumy have their baby. So I am going to keep this open till that date and hopefully put up a post of joy when that day happens.

I was honored by the many friends and relatives that took the time to come to the visitation and the funeral. I was also thankful that my children could participate in the service.  I listened to the service on the Beechwood Live Feed and I thought that Deb would feel honor in the words and somehow that is important to me right now.

I have never been sure how one would feel after a loss like this.  I must tell you that the last couple of weeks of her life were perhaps the toughest times I will ever witness.  But it was also a witness to courage in it highest form.  So someplace in that is a lesson. Can I also tell you an emotion? Of all the things that were hard about this, the hardest thing for me is the thought of her body laying in the cold ground. I know that is kind of a dumb thought and I am aware that that the soul now passes to another place, but somehow this has still been hard for me.

My kids gave me a good suggestion. I have a little dog now.  I paid a few bucks for this dog but so far it has been worth it. I named it Minnie.  If it was a male I was going to name it Stan because I have been worried they were going to retire my name, but instead I named it Minnie which is the name of one of my grandmothers.  In fact looking at this dog it resembles her somewhat.

I am somewhat puzzled by dogs.   I have been watching this dog pretty close and I let it out often. The other day I let it out and it walked in to the house and pooped right when it came in.  I sat the dog down and we both looked over the evidence and I explained that this could not happen again.  So far this method of training is working. There have been no more mistakes.

Thank you all once again for your love and care.  I am doing OK.   I am overwhelmed by the thought and care all of our friends have shown.  You are fine people.

Stan

2nd to last Post

Stan here:

Sad to say that it is time to close down this blog. Several people at the service asked if this poem could be on the blog so following is that poem.   In  a day or so I am going to post one more time with some reflection and thank you's.  Even though  very sad, our family learned a lot through this entire journey and I thought after this I might pass on a few thoughts that may be of help in the event that any of you are called on to face events like this of similar nature.

A poem for this Day and Something I want to Say.

It was about 44 years ago that a ship started to sail

In the hold were a few cents and a desire to never fail

On the mast was a man in a basket with a telescope

All relationships should start with this level of hope

A wedding, a party, and soon the study of nursing

A test, a quest and medical issues rehearsing

A passage to adult life and the pursuit of a medical careers

A bill or two from the Harper School that left us in arrears

A love for the piano and the ability to make it ring

A happy smile when she could hear that ring and sing

Of every note she sang and played over all her 60 years

Of every trip she took to far corners with no fears

Of every friend she met that were captured by her smile

Of every time she had to hold her happiness if even for a while

Of every time she played a sport like golfing with her dad

Of every time she told me she that her dad made her glad

In this regard a shift to a honoring her father and her mother

In so doing a deep feeling for her sister and two brothers

In fact to tell the truth a love for most all people she met

In so doing a return feeling from them, no lie, good bet

Kinda happens to all who hold high the right values in life

Kinda helps to always worship and hold high the virtues of a fine wife.

When life starts together you never sense a dark spot on the lens

At this juncture I must share something with all of our friends

Trouble entered our scene some 35 years ago

Full term infant deaths, pain deeper than you can know.

The telescope of life though, remained focused on the hope

That her future held a within its boundary the power of her hope

That has included the birth of two boys and a daughter

Gathered in to her arms as a gift her God brought her

Treasured in a way that was enhanced by the trouble

And followed by a love that I think was at least double.

In 2012 on a trip to a reunion

A moment occurred that caused great confusion.

"Something is wrong with my dress it does not fit

I have pain when I stand I have pain when I sit."

And so started a journey of courage and endurance

A life that was guided by the Lords assurance

A life that was blessed with 4 years of making each day right

A life that was witness to how to live a really strong fight.

A ship now arrives at an undesired destination

A family now tries to find some explanation

A thinker knows though of something that can be sure.

A God we serve in the end will make it pure

Let us all go forth with this level of hope

Let this life show large in every telescope.

Let it bask in the glow of new found eternity

Let us be assured of this with God granted certainty 

I must share with you that this poem was hard for me to read at the funeral.  But it was not near as hard to read it to you guys as it was to Deb several weeks ago. It was the first time however that she said I could read it without chopping out a verse someplace.  She was honored by it and that was important to me.  

Stan

Obituary

Following is Debbie's obituary and details of arrangements. This was kind of hard to write, as the reality sets in...

Debra Jean Hoksbergen was born on June 28, 1955. Her life ended on February 21, 2016. While the end of her life was very difficult, she can be honored and remembered in countless joyful ways. Her life was complemented by the gifts God granted to her, and she used those blessings to live life to the fullest.

From an early age, she enjoyed the gift of music and spent countless hours playing the piano with a passion that rang to the heavens. Her family and friends were at the core of her life and she enjoyed them all. Deb cared deeply for the people she knew by extending a hand of welcome, evaluating cuts or a possible broken arm, and wrapping arms around you during hard times. She enjoyed her nursing career and provided care over many years in surgery, neonatal, labor and delivery, endoscopy, and birthing classes. Deb's incredible work ethic was evident whether caring for patients or completing any project with which she was involved.

She had a deep love for her husband and children, her parents and siblings, and for all people she encountered in life. Many years ago Deb had to endure the loss of three infants. Jason Brandon, Megan Leigh, and Grant, who were born with Potter’s Syndrome and died shortly after birth. So the treasure of life took on special meaning when we were blessed with 3 healthy and thriving children.

Dear wife of 41 years to Stan. Loving Mom of Ross (Rumy), Alden (Mary) and Mieke (Aaron) Mutschler. Proud Grandma of Ainsley and George Hoksbergen, Lorelei Mutschler and number four, a grandson soon to be born to Ross and Rumy. Deb had a deep desire to meet this little one, but will now get to witness this from heaven.

Beloved daughter of Jim and Sylvia Vermeulen and daughter in law of Shirley Hoksbergen. Cherished sister of Krista (Tim) Schaafsma, Jim (Nancy) Vermeulen, and Ken (Shelly) Vermeulen.

Deb had a special smile. As her family and friends viewed this smile, they could sense a love that transcends any words.

After the diagnosis of ovarian cancer, Deb battled 4 1/2 years in which she had the deepest level of pain but the highest level of perseverance.

God takes home a soul, the world loses a friend, the husband loses a love, the children lose a mother and the grandchildren lose a mentor. However, we all gained the gift of a person that was special in so many ways.

To celebrate the gift of Deb's life, a service will be held at Beechwood Church, 895 Ottawa Beach Rd. Holland, MI 49424 at 11 AM on Saturday, February 27. Visitation will also be at Beechwood on Friday from 3-5 PM and 6-9 PM.

Memorials may be made to Hospice of Holland, 270 Hoover Blvd., Holland, MI 49423, or Beacon Ministries c/o Beechwood Church, (Deb helped co-found this organization, which provides free baby items to local migrant families).

To share a memory please visit vermeulenfuneralhome.com

The Journey is the Destination

Stan Here:

At around 2 AM on Sunday morning Deb peacefully passed away.  After spending 24 hours in a very quiet non-movement state she had a brief time at around 10:30 of being able to open her eyes and we were able to communicate  for the last time.  This was not in verbal form. Instead a light smile, a few tears and some idea that the words we said to her were reaching her. It was evident as Saturday went on that it was likely the end of life.  A different breathing pattern and some other signs that life could not be able to continue for much more than a day.

After resting all day Saturday, the end came in a very peaceful way. Mieke decided to stay overnight and was sleeping, holding Lorelei, next to Deb. She woke up around 2am and noticed her hand moving slightly and slow breathing. A few moments later, she was no longer breathing.  There was no final struggle and a very peaceful look on her face even after her death.  I will post again soon with arrangements but one thing I do know is that her service will be at Beechwood Church next Saturday at 11AM.

294 is the score

Stan Here:

These blog things somehow keep score.  I think some people write blogs and somehow advertise on them.  So built in to the program they have some stats and a moment ago I looked at that.  I was interesting to me that the one I am writing now is the 294th time we have posted something on the blog and we tried to never do so unless something had changed.  I did count up the other day the total number of hospital days and that is 149.  There have been 9 pretty major surgical procedures.  Mixed in between have been some pretty good days, a few trips, some days of little or no pain, 3 grandchildren and a 4th on the way.  It was really hard the other day when Hospice came here and it took three of us to get Deb from a chair to her bed.  I asked the Hospice nurse later if I had just seen the last steps and she shook her head up and down.

I must tell you an amazing story.  The trips from the bed to the chair were getting more difficult by the day. Pretty much a walker and a person on each side to assist.  2 nights ago I slept on the couch in case anything was needed by Deb who sleeps in the living room on a hospital bed. I woke up around 3 and she was sitting in the chair and had done so unassisted.  I asked how she had reached the chair and she had no recall of the trip.   Hospice uses a term and it is called "terminal restlessness". I am told that they have had it happen when patients who are 90 years old and have not been out of bed for 6 months have been found at the end of a hall a long way from their room.

The latest around here is that each day we witness a declining condition.  This morning we had a pain pump installed that will control the pain but it will make it so that Deb is not able to respond all that much.  We had to do so because the pain and the restlessness had reached a point of even the slightest touch or bed adjustment leaving her calling out in pain.  Deb has not had any food now for 2 days and with the medication level now she will not eat, nor has any desire to eat.  She is able to open her eyes at times but not able to express much what we can do for her. Her parents came to see her today but even that was kind of hard as she just is not able to express the normal emotions that come with human life.

So  number 294 has to exist as a good score in bowling only, but very hard and sad to write.  Folks, it is just tough to watch. I am starting to understand that many of you have experienced something like this with a parent or spouse.  Forever I will have a deeper understanding of all who have needed to endure something like this.

Thanks for staying with us.

Stan

Just the Facts

Stan Here:

When I was  kid I used to watch a show by the name of Dragnet. One of the characters was a guy by the name of Joe Friday and as he was was investigating the cases he would often say "just the facts maam." So this report has just that. They are kind of blunt but they are the facts.

Going back several days Deb had a fine weekend of being alert, with her children and grandchildren, with visitors, and moments where the quality of life returned in a good way.  Tuesday morning it was evident though that a strong decline in condition had taken place.  This was evidenced by increases in the pain, some levels of confusion, a change in color and alertness and all of the rest of the stuff that points to a decline in condition.  On Wednesday things  reached the point where I called Hospice and when the nurse arrived and the vitals and signals indicated that action was required on several fronts
Blood pressure was down to 80/60 and blood oxygen counts were down.  They brought in a oxygen machine to help with that. They changed some of the pain meds and they had a meeting with us to let us know that it was clear that the final stages of life would be experienced in a short time.

Deb's sister is here today to help with the care but Hospice encouraged me to have no other visits so that Deb could attempt to have the changes in treatments reach the point of being of being more lucid and have a few days in the future better than the ones of late.  Presently we are struggling. No other way to put it.

And those are just the facts.

Stan

The Medical Mile

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

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

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

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

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

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

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

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

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

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

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

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