Thursday, October 31, 2013

Change of Venue

Today, I brought Trent to a hospice facility.

I struggled a little with this decision.  I first had to reconcile to myself that I would have to make this decision without his input.   I want to do what is best for Trent and what he wants.  Those 2 things don't always mesh.  I look at him and watch him grow weaker every day.  I think about the logistics of our house - tiny doorways and walkways, tiny bathroom.  I wonder how much weaker he will get before this is over.  Even if I can handle his care now at home, will I be able to if he gets much weaker?  Honestly, I just don't know.  I see how hard even a little bit of noise and motion are on him, and I know it is not realistic to expect the kids to be silent and still all of the time they are home.  There is also the factor that at home I am more than just total caregiver.   I am also Mom, and there are dishes and laundry and phone calls and clutter and homework, etc. - all while keeping things quiet and still.  When I am spread that thin, am I really doing anyone the good they need?

I know my kids need me.  Trent needs me, too.  I can meet my kids' needs and still have them feel secure using the help that has been offered to me.  Trent has requested that I be with him - that is what makes him feel secure right now.  His needs are for a brief season.  I have put much prayer into my decisions and have gotten counsel.  I know some people may disagree with my choices, but the fact is that I have to make the choices that I feel are best, and I am at peace with the decisions I have made. 

The plans were set in place yesterday.  The social worker ordered an ambulance transport, but when she said that, I saw a look on Trent's face that I really hate to see -- It was a look that tells me he feels things are being done to him rather than for him.  He also thought that I was sending him away and not going with him.  I stepped in and told her that I would bring him in our van.  She really never agreed with me, but it is my choice; and I want to do what makes Trent feel the best as a whole - physically, mentally, and emotionally.  Dr. Illig agreed with me, too. 

I have had to talk with Trent several times about this decision -- he doesn't remember many conversations.  I talked to Trent about the facility and told him I thought we should give it a try.  I talked about the fact that it is a little bit more like home - definitely less clinical, but offers advantages we don't have at home -- an easy-to-maneuver set-up and less busy-ness.  I did tell him that, if he really doesn't like it, we don't have to stay.  I felt badly because he really never agreed to this - I think he just resigned himself to it.

Even though he has had much confusion lately, he was surprisingly lucid this morning.  He could answer all of Dr. Illig's questions.  He knew where we were going and why.  He said to me, "So this is where I am going through the end of my life?"  Oh, how I hated to answer that question!  I answered that it did seem likely.  Then he asked, "Is that why you've been so quiet about it?"  I told him I had been quiet about it because, first of all I hated to see him upset about it; and the second reason is that I don't like to think about it because I will never be ready to say goodbye.

The emotional weight of the day has been great.  The conversations were heavy.  There was a great deal of finality in leaving the hospital.  I really have no words to describe the emotions of bringing Trent here.  Many times today I have cried out to God to strengthen me and to direct my focus and to rule my emotions.

I don't know that I've said it here, but I have told friends that this has been such a journey of trust and surrender.  Trust that God has a plan, that He will give the grace and strength that I and the kids (and the rest of the family ) need, that He is in absolute control.  Surrender of our plans, surrender to His will, and to His timing.  When I purpose to trust and surrender, then I can have His peace.  It is God's grace and peace that carry me through each day.

Tuesday, October 29, 2013

Slow Steps

Things have not changed a lot in the past few days.  There is no schedule for this time of life - and they tell me that is even more the case with a younger person.  It is just 'wait and see'.    I'm certainly not rushing things.

Trent had quite a few visitors over the weekend.  Some of them, he just slept through the visit, which is fine.

I was supposed to decide today about taking him home or moving him to a hospice facility.  I really felt like it was not the right time to make that decision.  I felt like I didn't have enough to go on to make it today.  When Dr. Illig found out how I was feeling, she said to postpone a decision until Wednesday when she is back at work.  I was thankful for that.

We did discuss, though, the fact that I would like a different Hospice nurse assigned to Trent if we do go home.  There have been a couple of things that weren't the best with this last one; but the biggest factor was that Trent was no longer comfortable with her.  I could work with and around her if I needed to do so, but Trent has to be comfortable with the person caring for him.  It was time for a change.

Trent's confusion remains - I'm guessing it will stay that way.  It varies in intensity and topic.  I wonder if part of it comes from the struggle with and against the reality of what Trent is facing right now.  I am doing my best to answer the questions he has as delicately and as positively as possible.  It is not always easy. When my answers don't satisfy him, he becomes more frustrated and upset.

God's grace is sustaining us through these days.  He strengthens us when we have no strength of our own.  He gives us amazing peace in a time that can feel so tumultuous.  I am thankful that I can trust Him with all of the aspects of life -- all of the things that are out of my control are completely in His control.  I am thankful for God's goodness.

Saturday, October 26, 2013

When the End of the Path is in Sight

It appears that the end of this path may be in sight.  I don't like to look ahead to it.

This week brought changes again.  On Sunday and Monday, Trent was still recovering from the high doses of medication he had been given on Saturday.  We continued this week trying to manage the nausea and vomiting.

Wednesday night, Trent was insistent that he was going to church.  Considering how the day had been and how he was feeling, I thought he would give up on that idea.  He was adamant that he wanted to go.  I had my doubts as to his strength to be able to go, but since he was so determined, I decided I would do my best to make it happen.  We arrived late and left during closing prayer.  Trent was absolutely, completely wiped out from the effort. 

Thursday morning, Trent was still exhausted, and I expected that.

Thursday night things changed.  Trent went from his state of being sleepy and 'loopy' from the medication to being severely confused.  There was also a definite change in his eyes.  On Friday morning, he was still severely confused, but he was also unsteady and very emotional.

Trent was scheduled for more IV fluids on Friday, and he said he wanted to try to make that appointment.  We had his usual infusion nurse, Heidi, and she was visibly taken back by the change in him.  She started his IV, and we talked.  For some reason, the Hospice nurse was delaying calling me back; and that did not set well with Heidi.  Heidi got the Hospice nurse on the phone, and I could hear her as she told the Hospice nurse that she MUST get someone out there to evaluate Trent that day!  Heidi walked us out to our van and offered to step in if our Hospice nurse did not take action.

In summary, the nurse did come to the house and the decision was made to have Trent admitted for evaluation.  My biggest issue was wanting to know where we were in this.  The nurse had her opinion; down to the very core of my being, I felt differently.  I was glad we were going in.

Hospice admits directly, so we did not have to go to the ER or stand and wait in the Admitting line.  We arrived, and I brought Trent directly to the floor.  We were greeted by familiar faces.

The Lord worked things so beautifully!  Our regular Palliative doctor, Dr. Illig, 'happened' to be the one on call for the weekend, and she just 'happened' to be on the floor when we arrived.  When she saw Trent's name, she came right to us -- she was in our room within minutes.  Trent was pleased when he saw her.  We talked about what had been going on.  Then she asked me to step in to the hallway to talk.  Her 'gut' feeling is that we have entered an active end-of-life stage, and she believes we are looking at anywhere from hours to days.

I started making phone calls -- our pastor, Trent's dad and brothers, my sister, and one of Trent's best friends from college.  I made sure my sister was bringing the children up to the hospital.

When the kids arrived, I told them that Dr. Illig had been in to see Daddy and that she just doesn't know how much more Daddy's body can take because it has been through so much and had gotten so weak.  (The conversations you never imagine having . . . .)

Trent's parents and brothers were able to come to the hospital as well as one of his uncles and an aunt.  There were tears and prayers and serious things -- and even a little laughter.

Trent was so very tired, and I encouraged him to lie back and sleep.  He told me he didn't want to sleep because he didn't know if he would wake up.  I reminded him that he will wake up -- it is just a matter of whether he will wake up here with his family or in Heaven with his Savior.

I sat by Trent's side all through the night.  I dozed off a few times, but mostly I sat and listened to his breathing.

Today is a day of just 'sitting tight'.  We wait to see what the day will bring.  We feel loved by friends and family both here and far away.  We trust in our God and rest in His plan and in His peace and comfort.

Tuesday, October 22, 2013

Candid Thoughts

For the general public, I am an emotionally-reserved person.  Some people have said that I never cry or that things never bother me.  I even had one person comment that I had been totally unaffected by all of the events of this year with my husband -- nothing could be further from the truth.

I thought maybe it could be a help to someone else to know some of these things that I have gone through thus far.

  • I am absolutely human in every way.  There is no item in my wardrobe containing a large S on the chest.  If there were such an item, it would be in the wrong home.  It is true that I am, by nature, strong willed and independent and a care-taker and a problem-solver.  But . . . just like anyone else, I have emotions, and I have 'limits', and my strength fails -- I fail.
  • Some days, I do feel overwhelmed! 
  • Some days, it feels too hard!  There are moments when I feel, "I can't do this!"  Later, I look back and feel so stupid for feeling that way because I have to do it -- it's not a choice.
  • I don't want to do this!
  • It hurts me greatly when people are harsh with me or my kids.  I already know I'm not perfect.  My kids aren't perfect, either -- I know that, too.  Yes, I absolutely want them to be well behaved and to obey, and I don't want to make excuses for bad behavior, BUT sometimes, I just want to say to people, "REALLY??  You can't extend them (me) just a little bit of grace right now?  Do you realize at all what we are dealing with?"
  • It is hard when people distance themselves.  I know sometimes it is just circumstances.  Sometimes it is because they don't know what to say or do.  Sometimes they feel badly because their situation turned out differently than ours.
  • It absolutely rips my heart out when people reference 'the natural progression of things' or the fact that things are 'just to be expected.'  I'm not in denial, I just really don't want to think about it all the time or have people talk about it.  The same goes for references to life on the other side of this situation.
  • There are times I experience fear.  There have been some moments when that fear has resulted in feeling panic.
  • I feel like a failure.  I can't do for my husband what I want to do - to fix it.  I can't do for my children what I want to do and feel I need to do.  Things have been set in place to do for my kids the things I can't do for them right now.  (Where is that shirt with the big 'S' when I need it?)  There are things that we have done as tradition that we can't do right now.  As much as I try to keep things as normal as possible, the fact is that I can't keep it normal because life simply is NOT normal right now.
My limitations keep me humble and remind me that I am not supposed to depend on my own strength.  I really believe that it is a matter of being purposeful.  I have to purpose myself to ask God for help - and then to accept His help -- sometimes that comes simply from His presence and His strength from within, and sometimes it comes from people.  I had an instructor in college who said to me one time that I needed to learn to be gracious and simply accept things from people some times.  I had another friend recently who asked me how I was doing with allowing people to help me through all of this because they know it doesn't come naturally to me to accept help.

When the comment was made (and it was said ever so kindly and appropriately) that help was being offered so others could do for my children what I could not do for them right now, it did hurt.  The fact is that what it hurt was my pride.  Pride separates us from others, but worse than that is the fact that pride separates us from and puts us at odds with God -- that's not a place I want to be.  I choose to lay aside that pride and be genuinely thankful for what is being done for me.

The times that I fail are really no different than any other point in life.  I have to ask forgiveness, do my best to make things right, and move forward.  Period.

When I am overwhelmed and it feels too hard, those are the moments when I must shift my focus upward.  I cry out to God -- it may be just a simple, "Dear God, please help me!" or "Lord, I need Your strength because I just don't have any of my own!"  I thank God for giving us today and try very hard to find blessings in the day and the moments. 

There have been several points in time when I have told the Lord that I don't want to do this!  However, my heart's desire is to live a life pleasing to Him.  So, I follow that statement with, "If I must walk this path, then help me to do so in a way that honors You."  I know that, if God has this path for me to walk, then He will give me the strength to do it if I just stay close to Him.

When people say or do things that hurt, I do my absolute best to just let it go.  I have asked for help in situations where a person just maybe needs to hear it from a different perspective.  In the end, though, my goal is to extend grace to people.  I'm not perfect, either, and I'm absolutely sure that I don't always say or do the right things.  We all need grace.  And, if, maybe someone truly was being unkind, well -- that's not my problem.  Only God knows a person's heart, and that is His place to take care of a problem there.

Even though it is hard when people distance themselves, I don't hold that against anyone.  I do understand that each person has their own set of circumstances they are dealing with and that it is simply too much at times to add to the burden they are already carrying.  One very dear friend admitted that they needed to distance themselves a little because it hasn't been too terribly long since they had a loss in their family, and our current experiences have caused them to feel that grief all over again.  I understand that.  I think it took a lot for this friend to open up about that, too.  It is a growing process for all.

The conversations about 'the natural progression of things' are sometimes necessary, I suppose, to some degree at least and from certain sources.  It doesn't make it any easier to hear, and it doesn't make me want to hear it any more.  It's just one of those really tough things about this journey.

The emotions are a very big part of this journey, and I know they will come in varying forms.  Fear is natural, but what I do with that fear is what is most important.  When I turn that fear over to God and replace that fear with trust, then I can have peace.  When I let the fears have free course, that's when the panic hits.   I do have questions about what the future holds, but I cannot let fear reign.  I told my husband a few months ago that I was confident that, just as God has a plan for his life, He has a plan for me and the kids, too.  I do not believe that God wants our lives ruled by fear, and it is an active choice to trust and not fear.

When I feel like a failure, I need to check my perspectives.  It may be that I have failed in an area that I can correct.  If that is the case, then I need to make those corrections.  Sometimes, though, those feelings are because my expectations are not what they should be.  Way back when this all started - long before we knew what we would be facing now - my dear friend Francie said to me that I would need to learn to accept 'good enough as good enough', that this is not 'normal life'.  There are many things I wish I could change that I simply cannot.  I am doing my best to balance the things I must take care of.  There are many things that I cannot take care of the way I would like to or the way I have in the past.  I don't have the time to spend with my children that I really wish I could, so I do the best I can to still make life enjoyable for them and to make the moments that I do have with them moments that really count.  Life isn't 'ideal' right now, but it is where God has placed us, and He has a purpose for doing so.  I want to learn the lessons He has for me, and I want to help my children learn about God's love and grace through this, as well.

It is true that there have been many tough moments along this path, but God's goodness has been right there, too, and there is much for which to be thankful.  I am thankful for God's grace and patience and forgiveness.  I am thankful for His ever-constant presense -- He has never left us alone.  I am thankful that He loves me in spite of my failures.  I am thankful, too, for those that He has put in our lives who have walked along side us in this journey thus far.  God has been so good to us, and I feel blessed beyond measure.

Sunday, October 20, 2013

Maintaining the Course

This week was more difficult for managing symptoms than we have faced lately.  Over the course of the week, Trent's nausea and vomiting became less and less controlled.  We tried yet another medication which did not seem to help at all.  Trent had still been able to keep down his pain meds and so things were somewhat okay on that level -- until yesterday.  When the pain meds won't stay down, and we get several hours behind, then things start to spiral downward at a terrible pace.

I was thankful that my brother in law had arranged for the kids to be with another family for a few hours.  That way, the kids didn't have to see how bad off Trent got, and I could focus solely on trying to help Trent.

We tried several things - all to no avail.  I decided to call the on-call Hospice nurse.  She gave me instructions on using the concentrated liquid meds we had been given when we signed up with Hospice, and I did as instructed.  However, an hour later, he was still in agony.  I called back and she told me that she would be on her way to the house as quickly as she could.

She did arrive in a relatively short time, and she got right to work.  She said she was going to hit this hard with meds to get it under control, and then we would talk about maintaining.  Between what she had me give him an hour before and what she gave to him when she arrived, the concentration was many times more than what he would normally have, but it did get the pain under control. 

Once Trent's body had settled, she and I sat down to talk.  We are switching approaches to pain meds.  We are now using as few pills as possible and, instead, giving concentrated liquids.  Since the nausea and vomiting has been so hard to control, this approach requires less to actually have to go into the stomach and should, therefore, be less irritating.  I was also given much higher limits for the medications than I had been instructed to give prior to this point.

After all was said and done, the adrenaline level dropped, and I felt like I'd been hit by a truck.  The emotional and mental drain of the day was taking its effect.  I am thankful for God's strength to get through the 'crisis' moments.

As much as I had hoped we wouldn't end up in another 'pain crisis', I am extremely thankful for the benefits of Hospice care.  Without that, we would have been back in the ER, and possibly back in the hospital.  This way, I did not have to transport Trent anywhere, and we are home today.  I feel blessed.

Trent has been pretty out of it today - I fully expected that knowing how the one medication affects him and knowing how much he was given.  His head is a little more clear this evening, and that is good.  I just hope he was awake enough  this evening that he will sleep tonight.  I'm hoping the kids will sleep tonight, too. This Mama could use a decent night's sleep.

Psalm 4:8 I will both lay me down in peace, and sleep: for thou, LORD, only makest me dwell in safety.


Friday, October 11, 2013

A Strange Place

That is the best description of life right now that I can give.  It is a strange place.

I say that it is a strange place because there has been no other time in life that can really compare.  There is no 'point of reference' for walking this part of the path.  I'll be candid and say that there are times when it is very surreal -- It is hard to believe that this is actually where we are in life.

This is a strange place of trying not to live where we have not yet arrived, and yet still preparing for what seems likely to be coming.  When I think too much about what the future may hold, I quickly become overwhelmed.  When that happens, I remind myself to thank God for today and to ask Him to give me the strength I need for this moment.  I try to find blessings in that moment.  I don't know what tomorrow holds.  For that matter, I don't know what later today will hold.  I have to focus on living right now.

It is a strange time of waiting.  We are in a time where much of life doesn't seem to be moving forward, but rather standing still.  I'm not a fan of 'in-between times', but this is one I'm not ready to move beyond.  I'm doing my best to maintain where we are.

It is a time of strange perspectives.  Just a very short time ago, we wouldn't have called it a 'good day' if Trent were too sick or tired to go to work.  Now, it is a good day if he is able to eat something and is not throwing up, even when he is too weak to go anywhere.

It is a strange time for the kids, too.  Though we try to keep life as normal as possible, it isn't 'normal'.  The motion and commotion that comes with having 3 kids is sometimes too much for Trent to be able to deal with.  It is hard on the kids to always have to be quiet and slower than their normal pace.

This week, we turned over the responsibility of getting the kids to and from school to Trent's brother and sister in law.  Trent has had a couple of episodes of severe pain and nausea while he has been home alone and prefers not to be left alone as much as possible.  This has been hard on the youngest  -- yet another change.

We changed a couple of medications again this week, and we were able to get some IV fluids for Trent.  The fluids made a huge difference.  The doctor said that, if I think it helped, then he is willing to put in orders for more fluids as I think they are needed.  That was good to hear.  I have high hopes for one of the new medications -- I would love to see Trent get some relief and feel a little better.  He has definitely felt much better they past 3 days; and he was even able to go in to work for 2 hours yesterday.  He did have some kind of a medication reaction, though, this week.  I am in the process of trying to sort out which one - or combination - it may have been.  I think I may have figured it out and am testing my theory today and tomorrow, and I will see how things go.

We met the Hospice physician, Dr. Duane, this week.  He is very nice, and he spent quite a bit of time just getting to know Trent and where we are in this.  We also met our assigned social worker, Heather.  They each asked us, essentially, the same question -- "What do you see life like from this point forward?"  That's not an easy question to answer.  It's not something we want to think about too much.  We responded that we are doing our best just to live each day as it is given to us.  They were both surprised and pleased at our answer.  They said that most people enter Hospice care planning to die.  That would be a hard way to live.  I think I could sink into a state of despair pretty quickly if that were the focus of every day.  It is true that all of us face death -- our human bodies don't live forever, but I don't want that to be foremost in my thinking each day.  I choose to put my faith in God and trust Him with my future - with each of our futures.  I am choosing faith over fear.

Last evening, some men from church came over again to be an encouragement to Trent and to pray with him - to pray for us.  I am thankful for men who will do that.  I am humbled by their willingness to serve in that way.

So . . . here we are.  We are determined to live each day as God gives it to us; determined to see the blessings along the path.  We don't know what tomorrow holds, but we never did.  We place ourselves and our future in God's hands.  He will not fail us, and He has a purpose and plan for each step along this path; and for that I am grateful beyond words.

Wednesday, October 2, 2013

Blessings in Trials

I believe I've said it before, but I have felt challenged to focus on the blessings through all that we've been experiencing these past months.  Here are just a few of the many blessings along the journey:
  • A pastor and his wife who have been such an incredible support and who show their love and care for our children in an amazing way
  • An unrelated trial that has brought blessings now
  • Nurses and doctors who truly care and have a compassion that makes all the difference
  • The Hospice team that jumps into action so quickly in order to relieve Trent's discomfort
  • Friends who come to visit to encourage Trent
  • A friend who called me literally within 2 minutes of when I emailed him to let him know our current situation
  • Meals that have been brought to ease our load
  • For the many offers to help (even when I don't know what we need)
  • For my God who I know has prepared our steps for such a time as this
For these things - any many more - I am truly thankful!