Falling off a Cliff
May 2018
Degenerative diseases like Huntington’s are hard to
describe. Every day is different. Each day has a new challenge. As soon as you think you know what to expect,
everything changes.
It has been easiest for me to describe Rob’s journey as “one
step forward, two steps back.” A gradual
decline, but one that continues to speed up.
It used to be one step forward, two steps back every 6 months. Then every month, his symptoms were one-step-forward,
two-steps-back. Then weekly, Rob took
one step forward and two steps back. As
the disease has progressed, it became one step forward and two steps back
daily. But, he continued to hold his
own, for the most part. We’ve lived the
last year or so, living a modified version of our normal life. Then one day about the end of April, he took
his one step forward, and two steps back, but stepped right off a cliff and plummeted. Overnight.
We had been snowmobiling once a week, and Rob was working on
projects at home with his same positive outlook. Yes, his balance was getting worse. Yes, his memory was getting worse. Yes, his involuntary movements were getting
worse. Yes, he struggled with his
voluntary movements. Yes, he lost
patience quickly when working on projects…but it was do-able. He was still simply living a changed version
of his normal life.
And then, he stepped off that cliff.
Overnight his symptoms increased 10 fold.
Mentally: His dementia increased. He became paranoid and suffered panic
attacks. He had extreme anxiety about
being home alone. He became very
depressed and frustrated and despondent about his symptoms and his future.
His short term memory was gone. He
was very confused. He couldn’t keep
track of anything. He would take advil
and forget he took it one minute later.
He developed extreme OCD – he would
do nothing but stare at the clock and check his watch every 20 seconds, waiting
for his next dose of medicine 4 hours later.
Physically: He developed insomnia – also overnight. One night he slept and the next he
didn’t. He got 6 hours of sleep in 8
days. We went through 3 prescription
sleep meds before we found 1 that works for about 3 hours per night.
Suddenly, he was in constant
pain. He developed a permanent headache. His back started hurting. He was miserable, uncomfortable and in pain
with no relief. He can’t sit, stand or
lay down for more than a few minutes. His
back and neck started getting really tight and sore so he could not find a
comfortable way to sit down during the day. We tried every OTC pain medicine we
could with little success. He has
extreme OCD about taking his “headache medicine” every 4 hours. We tried chiropractic treatment, physical
therapy, cryotherapy, massage, etc. to no avail.
He is miserable, negative, anxious
and obsessive compulsive. He looks at his
watch every 10 seconds, to see when his next dose of medicine is. He says he can only “kill time” between doses
of medication. He argues that he can’t
sit down long enough to watch tv or a movie, but then he sits all day. We bought him a recliner because the couch
wasn’t comfortable, but the recliner is not comfortable enough. He argues with every suggestion I have for
him.
I knew days like these were coming, but I expected the
change to be gradual and the sudden downturn in his health caught me by
surprise. I have to help dose his
medications. I have to give multiple
back rubs and apply icy hot/deep blue/biofreeze/etc all day and night. He calls me at work and talks for an hour
about how miserable he is. If I get him
off the phone, he calls after 10 minutes go by.
He is trying so hard to sleep, that he can’t sleep. He spends hours
analyzing how he feels. Sometimes I
wonder if the pain is as bad as he says it is, or if he just thinks it is that
bad, or if he is panicking because he is afraid it will get bad. But he has called and said, “this is killing
me!” so I assume it is pretty painful.
His circulation is so bad that if he lays down, his hands
and feet get cold and his vision gets blurred, so he sleeps with wool socks and
gloves on. He dwells on his immediate,
earthly future and is depressed. He
argues with me over every suggestion I make. He wants the recliner, so one of
us will get out of it, but then won’t sit in it because it hurts. He wants something to do, but then says he
doesn’t have the energy to do it. He
wants to lay down, but won’t because he thinks he will get a headache. He wants to sleep in but is worried about
waking up in 3 hours to take his meds.
He wants us to spend all our time with him, but when we try to get him out
of the house he becomes angry and refuses to do stuff with us. He struggles to
have a conversation, so instead of talking to us, he sits with his eyes closed,
“listening” to us talk, or else he repeatedly tells us over and over how
miserable he is…over…and…over…24-7. For
over a month, he only talks about being miserable. We sympathize with him, but it is relentless
negativity. The kids and I are exhausted
from the negativity but it is all his brain can think of. We try hard to distract him, or encourage him
to participate in family time, or look at the positive side of things…but he
just argues with us. He complains he has
nothing to do to fill his days, but when I suggest having people come visit
with him for an hour here and there, he gets very agitated and has an anxiety
attack and doesn’t want to attempt to have a conversation with them.
So, more appointments are on the calendar. Neurologists, pain specialists, back doctors,
etc. Because we HAVE to do
something. We have to give him quality
of life during these last years. He
deserves to at least be comfortable. It
is so strange. It is like we were
suddenly thrust into a hospice care situation, without an imminent death, so it
is a never-ending hospice….more like a hostage situation for Rob. Trapped in this earthly tent, waiting on his
mansion in heaven. This is not hospice
care for 6 days or 6 weeks or even 6 months.
This could last years. So we HAVE
to get some pain relief. We HAVE to get
him to sleep again. We HAVE to do
something about his anxiety.
Every day I ask God for strength, peace, wisdom, patience,
compassion and kindness. This is the job
the Lord has given me – to care for Rob – and I need to do a good job for the
Lord. And for Rob, whom I love. I need to serve the Lord by serving Rob. I have to love him the best I can love him
and care for him the best I can care for him.
He is still my best friend and the person I wanted to spend the rest of
my life with, even though I don’t get to see that person very often. I can’t get frustrated or annoyed when he
expresses his negative thoughts for the umpteenth time. I have to continue to fight him to get him
out of the house to go to church. I have
to force him outside or on even small family activities with the kids. Because he deserves to be treated well, and
because the Lord has asked me to do so.
I try. I fail. I try again.
I fail some more. I want God to
be glorified, somehow, through this journey, but how?
I know the Lord is burning the impurities away. I know He is purifying our character. But many days I feel as though I fail God and
Rob. Trust me – any good you see in me
is ALL Jesus. It is only Him, it is not
me. It is HIS strength covering my
weaknesses. And I need more.
More of
His strength
More of His peace
More of His wisdom
More of His love
More of His tender mercies
Morning by morning new mercies I see. All I have needed, thy hand has
provided. Great is Thy Faithfulness,
Lord unto me.
Update May 25:
Depression comes in waves. Rob’s
attitude is improving. He is
adjusting. This sudden change in his
symptoms also caught him off guard. But
he is slowly learning his new normal with us.
He has tried to come along with us to certain things. He tried to come along when Heidi wanted to
do something outside for her birthday.
All we did was go to the Three Forks ponds to drown some worms, because
we didn’t think he could do more. We had
to force him and bring good lawn chairs.
But he spent most of his time sitting in the car. Then we took the fastest route home because
he could not even handle sitting in the seat any longer. He came along when I drove Cody to basketball
training and came into Home Depot with me to buy a toilet seat and a shower
head. But that was enough to completely
wear him out. He was done. I got more advil in him and he even came
inside to watch the last 10 minutes of basketball. He has become quite grateful for us. He is constantly thanking us for helping him,
even when he is being demanding. He says
he has no regrets. He says, “well, we’ve
had a good run. I couldn’t have done it
without you.” Huntington’s is just one,
long goodbye.
