Getting me through (part l)

One of the things that have helped me get through is certain Christian songs.  My favorite right now is written by Jeremy Camp.  The name of the song is, “I Still Believe.”  I had to stop typing for a minute because right after I typed the title of the song, it came on the radio.  I got goose bumps!  It brought tears to my eyes because just today, I thought to myself that I haven’t heard from the Lord in the past few days.  As I started typing this chapter, I wanted to write down the words of the song, and thought it would be neat if the song came on the radio.  Another co-worker came into my office, and I knew he would be able to tell that I was crying, so I told him what happened.  He commented, “Ain’t that the Lord at His best.”

Jeremy Camp wrote a little bit about the song in the jacket cover of the WOW 2004 CD.  He wrote, “We all experience trials and tribulations in our lives, but the hope in the midst of them is that the Lord is always faithful.  2 Timothy 2:13 states, ‘If we are faithless, He will remain faithful, for He cannot disown himself.’ “This song was written when I was facing a trial and could have either given up, or rested in the fact that the Lord would carry me through.  I had just lost my wife to a bout with cancer and finally laid it down before my Lord Jesus.  I just knew no matter what, I could still believe in His faithfulness.”

As I am about to start typing about the other song that has gotten me through, it came on the radio also.  I got goose bumps again!!  The title of the song is, “You Get Me.”  The song is written by ZOEGIRL.  Written in the jacket of the CD cover, “God is truly the only one who knows our thoughts before we think them.  He’s the only one who knew every day of our lives before we even took our first breath.  No one else but God could ever love us and accept us for who we are the way that He can.  He’s the only one who gets us.”

Camp, Jeremy. “I Still Believe.” WOW Hits 2004. Sparrow Records, Brentwood.

         2003.

ZOEGIRL. “You Get Me.” WOW Hits 2004. Sparrow Records, Brentwood.

               2003.

**There will be more posts before I post part II.

Mom’s surgery

Mom was admitted into the hospital March 2^nd.  She had to be there by 7:00 a.m.  They gave her intravenous fluids during the day.  Around 5:00 p.m., they performed surgery to give Mom a feeding tube.  She was supposed to be admitted for twenty-three hours.  She was only given a local anesthesia because of her ALS.  This upset Mom because she thought she was going to be "knocked out".  The surgery went fine.  I had asked for God’s wisdom for the doctors.  I am glad they only did local anesthesia because she may not have made it out of surgery if they had put her under.  Mom complained about a few spots that were bothering her on her body.  It turned out Mom had Shingles.

The hospital was going to make her checkout and wait until 3:30 p.m. to see the doctor about the trach.  This upset us because the doctor’s office was across town.  I spoke with Jennifer, and she was frustrated too.  It would have been a patient courtesy for the doctor to come see her.  Here was Mom, just having surgery to get a feeding tube, Dad not knowing much, yet they were trying to discharge her. The reason they were trying to discharge her is because she was pre-approved for only twenty-three hours by the insurance company as an observation patient.

Jennifer did not know how insistent Dad was with the doctors.  I told her to talk to the doctors and stick up for Mom.  She told me she would tell them to kiss her butt.  The hospital decided to admit her.  They fed her through her feeding tube and all was well.  The only thing that really upset Mom was when a nurse accidentally pressed on the spot where Mom had the surgery.  Mom cried.  It is a big deal when Mom cries, because Mom does not cry.

U  Do you have the ability to advocate what is best for your loved one’s needs?  U

U  If necessary, can you speak up and challenge the hospital, nurses, doctors, and the insurance company in order to get the appropriate care needed for your loved one?  U

Jennifer said Dad had been discussing Mom’s upcoming care with her.  He mentioned about putting Mom in a nursing home on the island.  She told me Dad does not understand the ratio of nurses to patients, and Mom would need more care than a nursing home could provide.  My concern was for a nurse to be there to help with Mom, especially at night. 

Joann was going to visit Mom and could give Dad a break at night.  She had to leave her kids behind because Mom had Shingles.  I am going down to see Mom in a week with my kids if the Shingles are gone.  I can delay my trip if I need to.  I was planning to be at Mom’s house for about nine days.  I know the days are going to be very exhausting.  I still want to get Mom to the movie, The Passion, and to push her in her wheelchair to the beach.

The next day, I needed to talk to Dad about a few things, so I called the hospital room.  I talked to Dad then wanted to tell Mom I loved her.  I told her I loved her, and if I did not know Mom always responds by saying the same in turn then I would not be able to tell what she had said.

Breaking point

 

Last night, I would say, was my breaking point, or when I had a meltdown.  During all of this, Paul and I have just opened a new business which has added stress.  One of my joys has been going to our cookie and ice cream shop and working.  I think our shop has done great, and I have been very optimistic.  Paul lately has made a lot of pessimistic comments about the shop not making a lot of money.  I told him I could not handle him making these statements because of what all I have been going through.  We got in another argument about the shop, and I retreated to the shower and cried.  I felt I could not handle it any longer.  I cried and prayed, mostly cried.  I pulled myself together and went up to the shop to get away.

What’s next? (part II)

Jennifer called me again to ask me to call Dad because she forgot to tell him to pack her pillow.  She had called home so many times concerning taking Mom’s medicines and other things that she forgot to remind him.  She did not want him to get mad.  Since I was not at home and my cell phone went dead, she could not get in touch with me and called Jamie.  Jamie went over to Mom’s house and helped Dad pack her things since he would not know what to pack.

She said Mom has not been able to eat much for the past couple of days because she could not swallow well.  When Jennifer was at Mom’s house, Mom only ate about a cup of apple sauce and one-fourth of a banana.  She did not know if they would have to put her on fluids and help her get stronger before they did the surgery.

One of the frustrating things patients go through once they have had a trach is communicating their needs to their caregiver.  They can mouth the words, but sometimes it is hard to read someone’s lips when they are not used to doing so.  Jennifer suggested Mom meet with a therapist so she will know how to communicate better with us.  They can teach patients to blink once for no, two blinks for yes, or use flashcards, so they can communicate better.

U  Have you utilized resources such as speech, occupational, and physical therapists who can aid in improving the quality of life for your loved one?  U

Last night’s devotion again was very relevant.  I had read it the night before because it was February 29^th and there was not a devotion for that night.  The title was, “Calling with Confidence.”   The scripture the devotion comes from is Psalm 44: 23-24, 26, “Wake up, O Lord!  Why do you sleep?  Get up!  Do not reject us forever.  Why do you look the other way?  Why do you ignore our suffering and oppression?  Rise up!  Come and help us!  Save us because of your unfailing love.”  The devotion talked about us going through difficulties, and we too may also question God in the same manner.  We may feel the Lord may be looking the other way but to remember He will never let you down.

The prayer at the bottom stated, “Lord, thank you for your promised presence with me today.  Although my circumstances may seem overwhelming, I call to you with confidence because you are all powerful and you love me.  Come and help me!  Save me because of your unfailing love and help me experience you as my sure refuge.  I wait expectantly to see you move in a mighty way in my life today.” 

I do not in feel in any way that the Lord is asleep.  He has shown His face to me even in the clouds.  He is constantly reminding me He is going to heal her.  I just have to trust in which way He will heal her. 

U   Do you trust in God’s promise that He will never forsake you?  U

 Fuller, Cheri. The One Year Book of Praying through the Bible. Wheaton: 

    Tyndale House Publishers, Inc., 2003. March 1.

What’s next? (part I)

Monday night rolled around and Jamie called me to tell me the report from Mom going to her doctor.  Mom really liked this doctor, and she suggested Mom not get the feeding tube or the trach.  She suggested Mom go through Hospice.

Angie, the Hospice nurse, came by and evaluated Mom.  She told us the options Mom had.  They did not have someone from Hospice which could come home with Mom and take care of her.  Our family was to be the caregiver.  We knew Dad could not handle taking care of her anymore and was not an option.  An option was for her to be admitted into the Hospice facility which has twelve beds.  There are two nurses on staff and two helpers which would mean if Mom needed to use the restroom she may have to wait before someone could help her.  She pretty much needs someone with her at all times.

U  Are there suggestions your health care provider can give you concerning negative events/things they know will probably happen to better prepare you?  U

After she got out of the hospital, she could be admitted to the Hospice facility, or get care at home.  If Dad needed temporary help, they could admit her for five days to give Dad a rest, or if she did not like the facility, she could go back home.

At first, Mom did not want anything to do with a trach or a feeding tube.  She did not want any outside help to prolong her life.  Then after the visit to the doctor and getting evaluated by Hospice, she has decided to get both the trach and the feeding tube.  Dad called the doctors from Mayo and now something needed to be done immediately.

Jennifer stayed with Mom this past weekend, February 27^th, to let Dad rest during the night; she stayed up with Mom.  She told me the most Mom slept was about thirty minutes.  The doctor put Mom on a patch to help dry up her secretions so she would not choke.  Since she was on this patch, they did not put her on the medicine that helps her not go to the bathroom as much.  They were up a lot of the night going to the bathroom, sometimes every fifteen minutes.

Jennifer told me Mom is talking a lot in her sleep now.  Joan, Mom’s friend in her Sunday school class, had been trained with Hospice up North.  She gave Jennifer a book called, Final Gifts.  It spoke of things patients go through when they are near death. 

Jennifer told me Mom woke up during the night and with a blank stare looked at her.  She knew Mom was still asleep.  Mom talked in her sleep about the conversation she had with Angie.  One of the things she said in her sleep that disturbed me was, “Stop breathing.”  Since Mom does not share her feelings with us, I did not know if she had already given up. 

Her quality of life right now is not much.  She truly is suffering.  She even struggles to say a few words.  I called her last night to talk to her.  Dad answered the phone, and I talked with him for a few minutes.  He said he was resting for a little while.  I told him I knew it must be hard on him and he replied, “You have no idea, no idea.”  I told him I wanted to talk to Mom.  Mom got on the phone, and I told her I loved her and was praying for her.  She said a few words I could not understand.  I did not ask her what she said but commented I knew she could not talk very well.  She said she loved me and then we hung up the phone.  It was a very brief conversation, but I wanted to talk with her because tomorrow she would go into the hospital.  Dad had gotten in touch with the doctors at Mayo.  They decided to admit her to get a feeding tube at 7:00 a.m. the next day, which was March 2^nd, 2004.

Doubting Thomas

During the next week, I really struggled a lot.  I knew the Lord was going to heal her, but I did not know in which way, physically or Him taking her to be with Him.  I don’t want Mom to pass away and the whole time I was expecting her to be healed physically.  I also do not want to be a doubting Thomas.

A blanket of snow

The following day, a beautiful blanket of snow fell to the ground.  Lauren and Ashton were looking forward to a snow day and having a snowball fight.  We spent the morning making snowmen and playing in the snow.  I called Mom to let them tell her we had snow.  No one answered.  A few, very rough days would start today.

Jennifer called me on the phone and asked me if I had read Dad’s e-mail.  I had not.  Dad wrote this e-mail on January 16, 2004.  Also in the e-mail it talked about Mom needing a wheelchair soon.  It read, “Girls, Elaine is getting worse every day.  She is choking, real bad, on her drainage, it’s real scary.  I talked with a doctor from Mayo tonight.  He is recommending a tracheostomy (trach) at the same time as they put in the feeding tube, and the BIPAP machine.  They will probably do it late next week, if they can get a bed at the hospital.  We will see a local heart doctor tomorrow at 8:15 a.m.  I will discuss all this with her.  I’ll try to send another message tomorrow night.  There is a lot going on.  I’ll try to keep you posted.  Love, Dad.”

Dad had called Mom’s doctor and the doctor’s recommendation was not to get a trach or feeding tube but to go through Hospice.  Here are a few important terms:

*A tracheostomy (trach) is an artificial airway that is surgically placed in the lower neck area to ease breathing and clear secretions. 

*A feeding tube is a temporary or permanent tube surgically placed through the abdomen usually through the stomach to provide nutrition. 

*The BIPAP machine is used to aide breathing in order to help the patient get a bigger volume of air in their lungs. 

*The Hospice Foundation of America helps patients and their families that are going through a life-limiting illness.

Mom had a decision to make.  Live a while, maybe a couple of years on a feeding tube and a machine to help her breathe, or to do nothing and live a much shorter life.

U   Have you sought out resources available to you such as Hospice? (A doctor’s referral is necessary to enter Hospice care but can be initiated by anyone.   Most Hospices accept patients with six months left to live or less.)  U

Tonight’s devotion was a doozie!  The title was “Recognizing God’s Presence.”  It spoke of how we focus on miraculous events instead of looking at God’s presence and Jesus Himself.  It even spoke of a wheel-chair-bound person getting up to walk again.

The scripture was Mark 8:11-13.  “When the local Jewish leaders learned of his arrival they came to argue with him.  ‘Do a miracle for us,’ they said.  ‘Make something happen in the sky.  Then we will believe in you.’  “He sighed deeply when he heard this and he said, ‘Certainly not.  How many more miracles do you people need?’  “So he got back into the boat and left them, and crossed to the other side of the lake.”

The prayer at the bottom of the page was very relevant, “Dear Lord, forgive me when I demand evidence of your working and power instead of thanking you for all you do.  Please open my eyes to be aware of your presence, to sense your nearness, and to see the works of your hand everywhere I look.  With all my heart I welcome your presence today, however you choose to reveal yourself to me.  And don’t let me forget to thank you.”

 Fuller, Cheri. The One Year Book of Praying through the Bible. Wheaton:        Tyndale House Publishers, Inc., 2003. February 26.

Get the picture?

The past few weeks have been difficult for me.  Patience was not so much what was so difficult, it was constantly being bombarded with being reminded of her being healed.  I guess I am looking at this negatively instead of positively.  Yes, the assurance is nice, and I guess it comes more frequently than I think I need. 

We went to the movies this past week, and the previews for upcoming movies were playing. The word HEALING came on the screen and underneath the caption was, “Coming in February.”

The scripture that comes to mind is Psalm 139: 1-6, “O Lord, you have searched me and you know me.  You know when I sit and when I rise; you perceive my thoughts from afar.  You discern my going out and my lying down; you are familiar with all my ways.  Before a word is on my tongue you know it completely, O Lord.  You hem me in—behind and before; you have laid your hand upon me.  Such knowledge is too wonderful for me, too lofty for me to attain.”   I guess He knows if He told me once or twice I would not get the picture.

As I have been typing, the last couple of days, I have realized I do need the constant reassurance from Him.  I guess Satan likes to plant seeds of doubt.