Hospice

Throughout Mom’s illness, we met some wonderful caretakers and we developed lifelong friendships with some of them.  Dad was Mom’s primary care taker during her terminal illness and there were times he needed to step away so he could relax.  Rochelle scheduled an appointment for Dad at Skilled Touch and Massage in Gretna.   During his first appointment, he met the owner, Jean.  Jean is a very compassionate woman who understood firsthand what we were going through.  Jean’s daughter was getting ready to undergo a stem cell transplant in November due to leukemia. 

Dad and Jean connected as caretakers and Jean asked if she could come to Rochelle and Scott’s home to give Mom an oncology massage.  Dad was thankful for the offer and he took her up on it.  Mom thoroughly enjoyed the massages from Jean and her staff.  The sessions provided relaxation for Mom and she always looked forward to the next massage.  

Jean called Dad early in the week (October 8, 2012) to see if she could come give Mom a massage.  Mom did not have an appointment until later in the week but Jean told Dad she really felt a strong need to see Mom.  Mom welcomed the extra massage and after the session, Jean told our family she would like to have one of her staff members to try a technique called “Reiki” on Mom.  Reiki is a Japanese technique for stress reduction and relaxation that also promotes healing. It is administered by "laying on hands" and is based on the idea that an unseen "life force energy" flows through us and is what causes us to be alive.  Following the Reiki session, we asked Mom how she felt and her response was, “I feel like I am moving in the right direction.”  

The nurse practitioner from the VNA revisited Mom on Monday, October 8, 2012.  During the visit Mom was in the recliner in the living room and Ro and Dad were sitting at the kitchen table behind the recliner discussing with her the issue we had on Saturday night regarding the adverse reaction to the medications.  Once again the medications were changed due to Mom’s needs and the nurse practitioner left after all of their questions were answered.  Apparently Mom was sleeping with her ears wide open.  Later that day Mom said to Ro and Dad, “I guess I was a pain in the ass the other night” as she shrugged her shoulders and somewhat grinned.   The details of the night were spared but Mom was reassured she had not lost her mind and those medications would not be given to her again.  Thankfully Mom did not remember a thing about that night, much like the way she did not remember a vast majority of the clinical trial in 1994.  

It was much easier on Mom to have her on the main floor.  I think it was a huge relief that she did not have to go up and down the stairs daily.  Rochelle also found it very comforting to have Mom at their home.  On the days she worked, she missed Mom terribly but she knew that Mom would be there waiting for her when her shift ended.  Ro and Mom had a conversation about dying.  Ro asked her one night if she was afraid to die.  Mom paused and responded by saying she was not afraid to die but she was sad to leave her family.  Mom adored her family and she did anything for us.  She once said she would take a bullet for her family.  She was used to being the patient and if anybody had to be in that position, she was thankful it was her and not one of us.  

The thought of not being able to have our daily phone calls, or to exchange our daily emails at work, or schedule weekend visits (the list goes on and on) was starting to sink in.  Selfishly we wanted to hold on to Mom and not let her go but we all knew this world had nothing left to offer and she would soon make the journey to heaven.  As a family you want to do everything to keep your loved one “just one more day” but you also get to the point where you are so sad to continue to see your loved one suffer that you are ready to let them go just to end the physical suffering. 

The calls on Monday and Tuesday morning were hard to hear.  Ro reported that Mom was having a hard time breathing and her lungs were really starting to take on fluid.  She was so weak that moving her from one space to another was becoming more of a challenge than ever.  The only food mom consumed was a little bite of pudding so her pain pills could be swallowed.  He throat was weak and her appetite was gone.  During our conversation on Tuesday morning, I was not prepared for Rochelle was ready to tell me.  She and Dad had time to talk and with Mom’s input, they decided it was time for hospice.  I did not want to hear the “H” word because I knew it was the final step before death.  I knew the day was drawing near but it all seemed to happen so fast.  No matter how prepared you think you are, it does not make it any easier when the dreaded day finally comes. I knew this decision was in Mom’s best interest therefore I had to put my selfish desires aside and accept we were at the point of hospice.  Once hospice takes over, we would no longer be involved with the palliative care nurse practitioner and staff.  We developed strong relationships with the palliative care staff in such a short time and we will forever be grateful for the wonderful care they provided to Mom.  Dad and Ro called the VNA to let them know we were ready to put Mom on hospice. 

   

Wednesday, October 10, 2012 Dad called me fairly early at work on my cell phone.  I could tell he had been crying.  He reported that Mom had a rough night and the morning was not going well.  He said she could not catch her breath and she was panicking which was making it worse.  He said they had been in contact with hospice and they were going to be starting Mom on morphine to make her comfortable.  It was his understanding the morphine was going to be administered that afternoon/evening so he suggested if I wanted to have one final conversation with Mom I should probably get to Gretna sooner rather than later. 

I got off the phone with Dad and told my boss what was going on.  I did not have time log off my computer because my boss and co-workers were handing me my purse and coat and pushing me out of the door.  I was very appreciative and I cried as I pulled out of the parking lot.  I called Josh to let him know what was going on and that I needed to leave town immediately.  I went home, threw in a few items and rushed out the door.  As I was packing, the magnitude of the situation had not set in.  I packed some comfy clothes, toiletries and hair products.  At one point the thought crossed my mind about packing something for the funeral.  I had an outfit picked out but I put it back on the hanger and left for Gretna.  I must have been in denial.  I thought I would have time to return back home and this cycle would continue for some time.

As I was driving on I-435 north towards Omaha, I felt the need to call somebody.  My heart was racing and I wanted to snap my fingers and be in Gretna with my family.  I called my uncle Brett to update him.  I am so thankful he took my call during his work hours.  He and I had a good conversation.  We talked about how he was 21 when Grandpa Cliff passed away and how difficult it was to see him suffer.  I was only 28 at the time and I could not imagine losing Mom.  I was terrified.  I started feeling like I was having a panic attack.  I had never previously experienced one but I know that is what was happening.  I could feel my heart beating so hard, my body was numb and all of a sudden I could not focus on the road.  Everything started going black and as I looked down at my speedometer, I was traveling well over 80 mph.  I had a strong feeling I was going to pass out as I was flying down the highway.  I was traveling in the left hand lane and quickly pulled over and stopped.  I never passed out but I sat there for several minutes before continuing to drive.  Brett stayed on the phone with me the whole time which was very reassuring.  

I turned on my iPod and started listing to “One Thing Remains” and sang my lungs out over and over until I got close to Omaha.  I finally turned on K-Love for a slight change of pace and the song “Even If” by Kutless was playing.  That was the first time I had ever heard that song and it was very fitting and timely.  I previously linked the video to the entry titled “The End Is Near.”  I really feel God was speaking directly to me at that point.  He was telling me it was not His will for Mom to beat the battle but we have to continue to have faith and to trust Him.  That was a defining moment for me.  It was that very moment I came to terms that Mom was going to pass away soon.  The thought brought me to tears but I was at peace with it.  I knew she was going to soon be walking through the gates of Heaven and be greeted by God and her friends and family that had gone before her.  It was comforting knowing she would no longer have to endure the pain she had been experiencing throughout her battle with cancer.  She was going to leave this cruel world and be welcomed to a place with no sadness or worrying and to a place that was filled with angelic choirs and streets of gold!  I knew we would have our personal guardian angel and we would no longer have to arrange weeks in advance to see each other because I knew she would be walking with each one of us every step of every day.

The following quote was taken from the Kutless website which talks about the meaning behind the song, “Even If.”

“From a spiritual perspective, ‘Even If’ is probably the most difficult and challenging song on our new record,” explains frontman Jon Micah Sumrall. “It directly addresses the question of ‘what do we do when the answer to our prayers is no?’ I have grown to realize that while we often pray for temporary or immediate comfort, God is doing a work on an eternal scale that far exceeds anything we could have ever imagined. He never promises that life will be easy, only that He will be faithful to never leave us or forsake us, and He promises that the end of the story will be glorious.”

Kutless wants listeners to know that even when hurt and heartache persist, they must trust that God knows best, and that while we may not understand immediately why we must endure these things, ultimately He is in control and is creating what will some day be a glorious ending. (http://www.todayschristianmusic.com/artists/kutless/news/kutless-newest-radio-single-even-if-resonates-strongly-with-fans/)

As I was nearing Gretna, Rochelle called me and asked me to stop in at the Gretna Wal-Mart to pick up some supplies for Mom.  As I was nearing the store, I had a strong urge to call Bruce.  Bruce is a very spiritual man and I knew he would have great in sight and would provide comfort in such a difficult situation.  I was a nanny for Bruce’s family during a summer in college.  I also lived with family during the summer of 2006 through October 2006.  They are such a wonderful family and I grew very close to each of them.  I called Bruce on his cell phone and he answered. We greeted one another and he told me as he was driving a few days prior, he felt the need to pray for me so he did.  I was very humbled and taken back by our conversation.  I then told him about Mom.  He was the person I needed to talk to at that very moment.  He provided words of wisdom and I will be forever grateful for meeting Bruce and his family.  Our paths crossed for a reason and it was so comforting visiting with him.  

Once I finally arrived at Ro and Scott’s I saw an unfamiliar vehicle in the drive way.  As I was walking to the house, a lady introduced herself as a respiratory therapist via hospice.  She was delivering the oxygen supplies needed for Mom.  This was very surreal and I knew it was going to be hard for me to continue to put on a brave face.  I wanted to curl up in a ball and cry.  I knew we had to be strong for Mom and God gave us the strength.  I went inside and hugged Mom as she was patiently waiting in the recliner.  She smiled and was glad to see me.  The respiratory therapist got Mom hooked up to the oxygen machine and explained it to us.  Rochelle was very familiar with it so I did not pay close attention to the instructions.  I sat and talked to Mom and she seemed at peace.  She did not look scared or afraid.  She acted as if this is how it was supposed to be and she seemed confident in her decision to welcome hospice into the home.  Before the respiratory therapist left she confirmed that another nurse would be stopping by soon to put in a catheter.  Mom was getting too weak to use the restroom and with the start of morphine the catheter was necessary.  Mom seemed very comfortable and relieved once she was hooked up to the oxygen.  When the nurse arrived for the catheter, I went to the basement with Scott and the girls. 

Scott and I had a good conversation while waiting.  We shed a few tears but we were okay.  The procedure seemed to take longer than it should have and I was growing more impatient than ever.  Rochelle came downstairs and I could tell she was upset.  She too was frustrated how slow the process was going.  Rochelle is a very good nurse and it was difficult for her to stand back and let someone else take care of Mom. We later learned that Mom was his last patient and the supplies were somewhat limited.  He eventually got Mom settled and he left for the evening.  

It was surreal to see Mom on oxygen but it was nice to see that she appeared more relaxed.  The oxygen provided more mental support than physical support but it was comforting seeing her not struggle and panic when it came to breathing.   We all take breathing for granted but when you literally wonder where your next breath is going to come from is a very scary thought.  

We had supper and were sitting in the living room watching the DIY channel.  She had been fairly quiet most of the evening, as if she was processing information.  All of a sudden, Mom sat up and said, “We need to have a family meeting.” Dad, Ro, Scott and I gathered around the recliner.  I wish Josh could have been there but he was at home taking care of the boys.  

Mom wanted to address several items and she had quite the agenda.  Shortly after the meeting started, all of us were crying except for Mom.  Not once during the meeting did she shed a tear.  She was very matter of fact and she definitely controlled the meeting.  She told Dad not to be "stupid" on the farm.  She worried about him having an accident on the farm during harvest and the late nights.  Ro and I promised to call Dad every day to check in on him to make sure he was doing okay.  Mom also told Dad that she did not want him to live alone.  At that time, it was hard for Dad to imagine being with anyone other than Mom but Dad listened to what she had to say. 

Mom looked specifically at Scott and told him to take care of our family.  Mom really loved her son-in-laws and she trusted them to look after our family.  Scott agreed to keep Dad in line as well as the rest of us.  

Mom told Rochelle and I to be proactive with our health.  She emphasized the importance of getting our baseline mammograms and staying on top of things.  She told us she never wants us to experience what she had and we promised her we would take care of ourselves.   Ro told Mom that she would get her baseline mammogram once her OB/GYN agreed.  Her doctor wanted her to be at least six months post-partum before she would order a baseline mammogram.  I informed Mom that I had already made an appointment at the Breast Cancer Prevention Center for my baseline mammogram.  My appointment was set for October 23, 2012.   I could tell Mom was pleased with our news on our preventative measures. 

Mom told us to enjoy every day with our children.  She reminded us of the importance of letting them be kids and to be thankful they are able to be active.  She told us to hug and kiss them every day and to let them know how much they are loved.

One thing Mom focused on was not going to bed mad.  She told us that when she and Dad would have disagreements, they would always make up before bedtime.  I will never forget when she said, “Do not go to bed mad.”  She was very matter of fact and adamant.  Mom and Dad stood by this rule for the 33 years they were married.  I believe they were a couple that were admired.  Mom and Dad had something very special and it was beautiful to see them together during the time they had.

Through the tears, Scott had a very heartwarming, genuine visit with Mom.  We were all still in the room but it was as if it were only Scott and Mom.  I do not remember everything that was said but I recall Scott saying how much he loved Mom and was so thankful to be blessed with such a wonderful mother-in-law.  Had Josh been there, he would have said the same thing.  

Once everything was said that needed to be said, Mom basically said she was done and she laid back in her recliner and took a short nap.  Shortly after the family meeting and her nap, Mom was ready for bed.  We got her to the room and positioned into bed for the night.  Once again, tears rolled down her cheek as we were positioning her for the evening.  We kissed her on the cheek, told her we loved her and that we would see her in the morning.  

Mom was so strong both mentally and physically.  We concluded that the only way she made it through the family meeting without shedding a tear was by the grace of God.  We feel as if divine intervention took place and Mom was at peace with what was in the very near future.  We also wondered if the “burst of energy” during the family meeting was the same energy the nurses previously told us about.  We knew we were heading into more unfamiliar territory but we were thankful that hospice was going to be there to help us through the process. 

On Thursday, October 11, 2012 we met with the hospice nurse through the VNA.  Mom rested in her recliner and Dad, Ro and I sat at the kitchen table with the nurse.  She brought a booklet and discussed with us their role and what to expect.  It was uncomfortable talking sensitive subjects in front of Mom but it was something that needed to be discussed.  For example, we talked about contacting the local funeral home and arranging transport from Gretna to the funeral home in McCook, contacting the cemetery, the emergency kit of medications that were to be kept in the refrigerator and the physical signs of end of life.   They told us she would eventually start sleeping more and ultimately quit eating.  The nurse also emphasized that patients need reassured/permission to pass away.  I am sure Mom had her ears open just like she had in the past but not one time did she seem uncomfortable with the conversation.  I would occasionally get up from the table and sit by her to try and distract her from the conversation in the kitchen.  Mom was a realist and very matter of fact.  If she was listening, she knew it was something that needed to be discussed and the planner in her was probably thankful we were getting the details discussed in advance.  

Below are the lyrics and the song to “Hold On” by 33 Miles

 

I've been there a thousand times
Felt the rain like a thousand knives
And it hurts, I know it hurts

I've been there like a fighter plane
Trying to fly my way through a hurricane
And it's hard, I know it's hard

Don't be afraid, you'll make it through
Just call out to me and I'll come running to you

And hold on, hold on
When the current pulls you under
And your heart beats like thunder
Just give me your hand

And hold on, hold on
Until the storm is over
And I'll be fighting for you
Just give me your hand and hold on

I give you hope, I give you faith
And if it's dark I light the way
For you, for you

By your side until the end
Until you're standing tall again
I'm here, I'll always be here

And if the tide sweeps you out to sea
When your strength is gone and it's hard to believe
Hold on, hold on

http://www.youtube.com/watch?v=WNwS4cGc2Wk&feature=kp