It was hard being in
Kansas City away from my Mom, my Dad and my sister. I wanted to be there for
them and with them while Mom was going through her first round of full brain
radiation. I worked Wednesday, Thursday
and Friday and as soon as I got off work for the day we headed to Omaha for the
weekend.
Once again God’s timing
was perfect! Josh and I had worked flex hours
in order to help minimize daycare costs.
When Bryson was first born, I worked Monday through Friday from 5:00 a.m.-1:00
p.m. Josh worked Monday through Friday from
2:00 p.m.-10:30 p.m. We literally were
like ships passing in the night. Our 10
minute conversation consisted of Bryson’s feeding schedule and bowel
movements. All you Moms know what I am
talking about. We never saw each other
but we valued our one on one time with Bryson.
We continued to work opposite hours after we were blessed with Holden in
May 2010. We were so thankful to spend
quality time with the boys. We continued to work these hours for approximately
four years.
A position became available at Josh’s work in
a different department which would allow more family time. The hours would be Monday-Thursday from 9:30
a.m.-8:00 p.m. with Friday’s off. We
were very excited for this opportunity because the odd hours we had been
working were starting to take a toll on us.
We felt more like roommates rather than a married couple. Should Josh get the position, I would be able
to work 7:00 a.m.-3:00 p.m. and we would get to spend more time together as a
couple. This also meant I would not have
to go to bed at 8:00 p.m. so I could get up at 4:00 a.m. Josh applied for the position late Spring
2012 but unfortunately there was a hiring freeze so changes were not being
made. His application was being held
until the hiring freeze was lifted.
Josh received an offer
for the new position the same week Mom was terminally diagnosed! Our prayers were answered and Mom was
thrilled when we told her Josh was offered the position. We were so excited and of course he accepted
the position. He no longer had to work
on Fridays which would allow us to travel to and from Omaha as a family! This
made life a whole lot easier. We could
leave home a lot earlier on Friday afternoons to see Mom and we did not have to
continue to be separated from one another.
How awesome it was to watch God’s perfect timing play out right in front
of our very own eyes. His timing is
always perfect!
Rochelle and Scott
opened their home to Mom and Dad.
Knowing Mom’s doctors were within minutes versus hours provided
tremendous comfort. Mom and Dad were
hesitant at first because they did not want to interfere with Rochelle and
Scott’s lives. Even more so, Mom expressed
she did not want to leave bad memories associated with her illness at their
home. Rochelle and Scott insisted and
with some convincing Mom and Dad finally agreed. The wonderful acts of kindness and
compassion were displayed when Rochelle and Scott opened their home up to Mom
and Dad. Dad is a very capable man but I
am not sure he would have been able to care for Mom by himself at their home in
Indianola given Mom’s rapid decline in health.
There is no doubt in my mind our neighbors, family and friends would
have helped with Mom’s care but there was something very special about being
able to spend as much time as possible as a family during Mom’s final days.
Not surprisingly, my
boss accommodated our situation very well.
He told me to do what I had to do in order to spend as much time with
Mom as possible. I worked
Monday-Wednesday and after I got off work on Wednesday I would drive to
Gretna. There were times Josh would take
off work and come with me and there were other times I brought the boys and
Josh would come up on the weekends. We
would stay until Sunday afternoon and head back home so we could be back to
work on Monday. Rochelle’s co-workers
and boss continued to accommodate her schedule as well. They were willing to switch her days so she
could spend time with Mom.
Fall was Mom’s favorite
time of the year. She loved winter and
Christmas but fall was her favorite!
When she was terminally diagnosed she brought up the fact that it was
around the holidays and we were always going to associate the holidays with her
diagnosis. Typical Mom, thinking of
others rather than herself.
A major part of the
hesitation to temporarily reside in Gretna was the fact that harvest was right
around the corner. Once again, Mom was
concerned with harvest. As you recall,
she waited to mention the lump in her breast in September 2010 because she wanted
to get the crops out. At this point, it
was clear there was no way Mom would be able to drive the combine and Dad was
not going to leave Mom’s side. As noted
in a previous entry, God knew what he was doing when he blessed us with the
most amazing neighbors! The area farmers once
again stepped in and took care of the farm.
It was quite the operation!
Several farmers offered their time and equipment to get the crops
out! We would periodically receive text
messages with pictures and it was breathtaking! Multiple combines, tractors, grain carts,
semis and other equipment were in the fields ensuring the crops were going to
get out before winter set in. Our
family is forever grateful for those that helped lift the burden of harvest so
we could spend time with Mom. These
generous people put their own farms and livelihood aside so they could help our
family. Below are a few pictures taken by our good friend Doug. Dad always enjoyed getting pictures of harvest while we were in Gretna caring for Mom.
It is definitely a lot
easier to help than to be helped but we were positively overwhelmed with the
acts of kindness towards our family.
That was the first time in 35 years Dad did not participate in corn
harvest. It was hard for him to not
harvest but he knew the farm was being taken care of by some of the most
talented, caring farmers around. He was
so thankful to be blessed to spend every second of the day with Mom knowing her
time on earth was limited. It was sad to think just a year prior, Mom was
running the combine and life was “normal” and then to fast forward a year
seeing Mom in the position she was in.
It still brings tears to my eyes to think about how quickly life can
change and how often we take life for granted.
We got into a routine
rather quickly. Mom and Dad’s belongings
were set up their space in the basement at Rochelle and Scott’s house. The large walkout basement, king size bed, full
bathroom and a sitting area was the perfect set up for Mom. Mom and Dad had their own space but they also
had the convenience of 24/7 help from Rochelle and Scott. Mom’s radiation appointments were scheduled
for mid-afternoon so the goal each day was to get Mom up in the morning and
move to the main floor for the day. Mom
had to tackle the stairs each day. One
person would walk in front of her to help guide her up the stairs and another
person would stand behind her in case she lost her balance.
Mom struggled with the
stairs and each day became more of a struggle than the day before. She got tired quickly and she had a hard time
breathing. The lymphedema was starting to
get more intense which would in turn compromise her breathing. Once we got her
upstairs we positioned her in the recliner in the living room so she could
catch her breath and gain some energy to take a shower. We would make her a small bowl of oatmeal and
a cup of hot tea for breakfast. Occasionally
she would request fried eggs with toast and jelly. It took her quite a bit of time to eat
because she was pretty weak. Her eye
hand coordination was affected because of the cancer attacking her brain. Typically she would take a cat nap after breakfast
and then we would bathe her.
I am so thankful
Rochelle is a nurse. Things were
definitely more calm with Rochelle and Dad were helping Mom. The situation was a bit chaotic when it was
Dad and I. Dad did fine but I added
nervous energy to the situation. I
freeze under pressure and my mind turns to mush. I am happy to gather the supplies, make meals
and various other tasks but I do not have it in me to be the primary care
taker—not because I don’t care but I just do not have the God given talent
caretakers have.
Frankly there were
times I failed at gathering the supplies.
The first time I helped Dad with the morning routine, he told me to make
some oatmeal for Mom for breakfast. I
was more than happy to help and thought there was no way I could mess up making
instant oatmeal. I remember scrambling
in the kitchen and throwing open every cupboard looking for the box of
oatmeal. I couldn’t find it anywhere! I remember thinking how pathetic I was for
not being able to do something so simple but after the first couple of days I
became more comfortable and confident with my limited role as a caretaker. I know Mom was appreciative of our efforts
and I am sure it offered her a bit of entertainment seeing us run around like
chickens with our heads cut off. She
always remained calm during the hectic situations. She acted as if she did not have a care in
the world!
I really got nervous
with Mom’s medication schedule given the fact she was on so many pain
medications. Speaking of which, we still
reminisce and get a little laugh when we talk about our system for
giving Mom her pain medications. It was very overwhelming knowing when to give
which medication and the schedules and medications were always changing in
response to Mom’s needs. Dad developed a
system and it worked quite well. Rather
than using the actual name of the medication, he came up with his own names for
each medication so we knew what each prescription was for. He would write the made up term with a black
sharpie on the bottle so we knew what each med was. I cannot begin to remember all of the
medications that were prescribed but I can vividly see “Mec” “Dec” and “Itch”
in Dad’s handwriting written on the medication bottles. You had to be there to appreciate the humor
but we laughed at this. Dad did a
phenomenal job at managing Mom’s pain and her medication schedule. He faithfully wrote down the time whenever a
medication was given. We joked and said
maybe he should have been a pharmacist.
I have to share another funny story. One evening we were upstairs and Rochelle had
given Mom her blood pressure medications after supper. Once we were done with supper, we headed back
downstairs to get Mom settled in for the evening. She wanted to sit in the recliner down stairs
and watch TV before bed. I was sitting
on one of the sofas and was talking to Mom.
I could see Dad in the background at the medication table getting the
pills set out for the evening and night.
He continued to give her some of her bedtime medications. Mom never questioned what she was
taking. A few minutes later Rochelle
joined us downstairs and I could see she and Dad were having a conversation
about Mom’s meds. I could tell something
was wrong but I wasn’t sure what. All I
could see was Rochelle laughing and Dad lipping, “Shit!” Dad was pacing back
and forth and rubbing his forehead. I
was trying to maintain a normal face and continue the conversation with
Mom. Rochelle signaled to me in the
background that we accidentally doubled up on Mom’s blood pressure
medications.
Later on in the
evening, Rochelle warned us to be careful during the night when Mom wanted to
get up from bed. Due to the fact we accidentally
doubled up on her blood pressure medication, her blood pressure would likely be
very low therefore she may feel light headed and even more unstable on her
feet. Thankfully the night went well and
we had no incidences of Mom having issues with her blood pressure. Once again you had to be there to fully
appreciate the situation but it was funny.
A few days later we told Mom we accidentally doubled up on her blood pressure
medication and her response was “Oh well” as she was grinning and shrugging her
shoulders. She also said, “What’s the
worst that can happen?” again while she was grinning. Mom had a great sense of humor and she never
lost it during her illness.
We had a lot of laughs
despite the rough situation. We also had a lot of tears but I definitely
remember laughing so hard at nothing.
Mom joined right in with us during out outbursts of laughter. We did the best at making the most out of
what little time we had. We never really
slept very well so I am sure a lot of the laughter was a result of sleep
deprivation. We never lost hope for a
miracle but knew science was saying she was not going to survive.
My anthem during this trying time was “One Thing Remains”
by Kristian Stanfill. I downloaded it on my iPod and I put it on repeat. I listened to it most of the way to Omaha and
back. I felt an overwhelming sense of
comfort when listening to this song.
Your love never fails
It never gives up
It never runs out on me
Your love
It never gives up
It never runs out on me
Your love
Higher than the mountains
That I face
Stronger than the power
Of the grave
Constant in the trial and the change
One thing remains
One thing remains
Because on and on and
On and on it goes
It overwhelms
And satisfies my soul
And I never, ever,
Have to be afraid
One thing remains
One thing remains
In death, in life
I’m confident and covered
By the power of Your great love
My debt is paid
There’s nothing that can separate
My heart from Your great love
I still hold this song very close to my heart. I continue to listen to it and last time I
checked, iTunes shows I have listened to the song over 300 times! Yes, that’s 300! I know it is (borderline) obsessive but I feel
a strong connection with Mom when I listen to it so I will continue to listen
to it, especially on the days I really miss Mom.
Mom really went downhill fast. When we were first told she had a year to
live, I was naïve thinking we would have 9-10 months to go on vacation and live
a normal life and then thinking the last couple of months would be a
struggle. Unfortunately this was not the
case. Each day it was apparent she was becoming
increasingly weak. Physically she was
completely dependent on us to care for her.
Mentally, she was sharp and she could converse but the fight in her was
weakened. She knew where this was going
and I feel she felt defeated. At one
point she said, “I knew cancer would hurt but I didn’t know it could hurt this
bad.” Mom also lost her ability to make
a decision. We would give her choices
and her response more times than not was, “I don’t know. What do you guys think?” For those of you that knew Mom, she was a
decision maker and she stuck to her guns.
It was sad to see her lose the functions we all take for granted.
Rochelle and/or Dad would call me every Monday,
Tuesday and Wednesday morning to let me know how Mom’s night was and how she
was getting along. Mom’s skin continued
to get worse. On September 11, 2012 she
met with Dr. Reed. Dr. Reed’s notes from
the visit are as follows:
HISTORY OF PRESENT ILLNESS- Nancy presents today
with a chief complaint of itching and discomfort of her right arm. Patient has tried numerous lotions and
ointments for the itching and it seems to make her feel more sweaty and in turn
itch more. She has removed compression
garment and has applied calamine lotion today and thinks this has helped. She does say that the itching is much worse
during the night and it makes it difficult for her to sleep.
PHYSICAL EXAM- Extensive over entire right arm. More intense in the axilla and medial
arm. Rash on back and abdomen. She has a
normal mood and affect. Her behavior is
normal. Judgment and thought content
normal.
ORDER- 1) Hydrocodone-acetaminophen; and 2) Zolpidem
(Ambien).
Rochelle quickly recognized the decline in Mom’s
health so she recommended getting Mom on palliative care. Palliative care is the step before
hospice. The goal of palliative care is
to focus on relieving pain without treating the underlying cause of the pain. This
was very difficult to hear and accept but we all wanted the best quality of
life for Mom. The pain meds she was on
were not working as effectively as they previously were and we wanted nothing
but the best for Mom. The cancer in
Mom’s skin had taken off and she was absolutely miserable. Her skin was so red, almost purple and
comparable to the texture of leather.
Mom described the pain as overwhelming stinging, burning and
itching. We had some special lotion we
would put on her and as long as we were applying the lotion her skin felt
somewhat soothed. The lotion had menthol
in it and honestly I hope I never have to smell menthol again. It brings back terrible memories.
Rochelle contacted the Visiting Nurse Association
(VNA) to start Mom on palliative care.
The VNA is an awesome organization and I would recommend it to anybody
with a family member with a terminal illness.
They immediately got Mom on some pain patches to help control the
pain. These seemed to work pretty well
for the first couple of weeks. We had a
brief meeting with the VNA and they briefly touched on the dying process. One
thing that sticks out in my mind is when they said most of the time, the patient
will get a burst of energy in the days leading up to their death. It was hard to imagine how somebody who is so
close to death could get a “burst of energy.”
They are the experts and they have seen it time and time again so I had
complete trust in what they were saying.
Mom got stuck in her routine and she wanted to go to
bed at 7:30 every night. Again, for
those of you that knew Mom she liked to plan but she was very good at doing
things on the “fly.” Dad was such a trooper.
He was not ready for bed at 7:30 but he did not want Mom to be
alone. The good thing about going to bed
at such an early time was they had a lot of time to visit. Mom and Dad talked about several things. One thing Mom was worried about was Dad being
alone on the farm. She did not want Dad
to be alone the rest of his life.
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