Where we are – Year 2
Year
2…Where are we? How are we?
Rob
is doing well.
This
disease is like one step forward, and two steps back each day.
Big
picture wise, we are good. We understand
that God has a plan and a good and perfect will for our lives. He works all things together for our
good. But, sometimes, in the small
things, it is hard. There are hard
things. Hard days. Hard moments.
But these help show us God’s strength and peace, and I can only pray the
HE is glorified through this walk.
So
– 2 years since Rob’s diagnosis…
He
goes to physical therapy once a week. They
mostly work on keeping his balance. His
balance and walking is getting significantly worse, but he is working hard to
keep it. I am so grateful our trip to
Alaska was this past summer, because I don’t think he would be able to do most
of it by this coming summer. Part of his balance problems are compounded by the
involuntary movements, as he rocks side to side. Some days he starts to tip over
backwards. He has not fallen much,
except for times on snow and ice. Stairs
are a challenge for him. Getting in and out of bleachers in the gym are not fun.
He
has lost quite a bit of confidence and independence. Which is very hard to see. I mean – he was like… McGuyver and John
Coulter or Jeremiah Johnson and Davy Crockett and Fred Bear all rolled into
one. I’ve always said, you could kidnap him a night, blind fold him, drop him
out of a helicopter, and he’d know exactly where he was and walk out in hours
with a smile on his face. And he could build
or repair anything. A survivor not
typically seen in today’s world. But…now,
he doesn’t like to sit in church without me.
If I am sick or need to sit in the nursery – he would rather stay
home. If I am serving in the nursery or
as a tot church teacher, he comes down to my room to find me before going to
the fellowship hall. He has stopped going
to basketball games if I need to work concessions and can’t sit with him. Regardless of the fact that every single
person in either building (church or MCS) would LOVE to sit with him and “keep
an eye on him” and care for his needs…he would rather stay home. Running errands around Christmas became
difficult, as he cannot be alone in a store.
He has to be next to me. He isn’t
sure where to go or what to do without someone else keeping track of him. The kids would try to lead him one way or the
other so we could split up and do our Christmas shopping…but he always returned
to me. I took Heidi to the mall and
wanted to do some girl-shopping, but he stands in the middle of the clothing
store, rocking back and forth and following me.
He could not be more than 10 steps from me. He follows me around our home, much like a
pre-schooler. Even if I announce that I
am going to the bathroom, he will follow me and stand there.
Please
understand…I do not say these things as a complaint or out of frustration or
because I’m annoyed, or as though I am blaming him for these things…but I MUST share
them to be completely honest about what life in our home looks like.
He
has lost his confidence. Yet, at the
same time, he fights to keep his independence.
He refuses to watch tv or movies during the day. He tries to stay active. He does some house chores for me or tries to
work on projects in the garage. He
messes around with the snowmobiles. He
drives himself to his PT appointments and occasionally to the parts store. But, I have seen him have difficulty using
his credit card at the gas pump or the store.
And he called me in a panic one day, while I was in a meeting at work, because
he was trying to use an ATM and it charged him, but did not give him his money.
So I am going to have to start giving
him cash allowance, I suppose. He has
not been going anywhere on his own lately, as he doesn’t like walking on
slippery roads/parking lots/sidewalks without someone there with him. So that is good.
His
involuntary movements are significantly worse, but he just started a (very
expensive) medication that should make a difference. I had to fight with insurance companies,
manufacturer, etc. to get all the paperwork straightened out, but…now we are
set for the year. His voluntary
movements are jerky and somewhat uncontrolled. For example, if he wants to hand me something,
it often ends up shoved in my face. If
he wants to take a drink of water, the cup ends up at eye level and sloshing
over. He knocked his water glass over so
many times that we got him a camelback water bottle for Christmas and now he
can stay hydrated without spilling water everywhere. He also has lost his dexterity, so if he is
working on something, he will either drop parts or break them. He doesn’t know how hard he is squeezing
things, and he wants to “do it right” so he squeezes too hard and breaks
things. The hope is that by controlling
his involuntary movements with this medication, his balance and voluntary or
controlled movements will improve.
His
choking is becoming worse. He eats very
slowly, taking small bites and trying to chew, but he regularly coughs, chokes
and clears his throat while eating or drinking. He concentrates very hard and
always sits at the table and we try not to have him talk while we eat, although
after sitting home alone all day, he would like to connect with us
somehow. Not that he can keep up with a
conversation very well even when he isn’t eating…unless, of course, you are one
of the people he catches after church and he can go into GREAT detail about
something that happened in the past. J Although he has begun to mix up people's names or mix up dates, or give the wrong information out to people in a conversation. I don't bother trying to correct him.
His
dementia, short term memory loss, moods, etc. are all deteriorating as
expected. He will insist he has "never been" somewhere, but we all remember him being there. He argues with us about things, but we try not to argue back...for what good would it do? In the long run, it does not matter if he has the wrong information or his memories are incorrect. No need to start an argument and get him agitated.
His
reaction time, time awareness and spatial reasoning are worsening, but I am
very grateful he can still back the sled trailer in the tiny gap next to our
house. J
He
tires out easily and usually naps every afternoon. He says he wakes up well rested in the
mornings, but I believe he has a terrible time sleeping. He tosses and turns and twitches and moans
and makes it nearly impossible for me to sleep.
He is usually awake from 2:30 or 3 am until 4:30 or 5. But, I try hard not to be frustrated for lack
of sleep, because someday I will get plenty of sleep as I lay in bed all alone.
He does take a sleeping pill before bed
which seems to help the first half of the night. But regardless of his sleeping habits, he
wears out easily. We need to make sure
he gets regular naps and snacks or else he gets a little “testy.” We do see Dr. Jekyll and Mr. Hyde more often…but
who can blame the guy? Besides, the kids
and I remind each other that “it is the Huntington’s, not Rob.” We do miss Rob. Which probably sounds strange. But we do miss the old Rob a lot…he shows up
sometimes, but most of the time, Huntington’s Rob is the person in the
house. And we just remind each other,
again and again, it’s the disease, not him.
He
is able to stay home by himself and work on little projects. He tries to stay as busy and active as
possible so that he keeps those functions as long as he can. He is slowed down because his back gets sore
easily. His circulation isn’t the best,
as this disease just continues to attack every part of his body. His hands and feet are always cold. The circulation effects his eyes and they get
dry and are easily irritated, so it is especially difficult for him to remain
in one position for very long. He
usually only lasts 20-30 minutes of sitting, standing or laying down at the
most before he needs to readjust. So
sitting in church is difficult for him.
It also seems like everything bothers his eyes or his back.
He
works hard to maintain what he can, because he says, “it’s just easier on
everyone if I fight this.”
In
quiet moments, he will say, “Well, I have no regrets. We’ve had a good run.” God bless him.
So…it
is difficult. It is hard. It is not easy or a cake walk.
So
how do I continue to say, “we’re doing good” or “he’s doing good”?
Through
it all, we know that God has us in His hands. He is in control. He loves us, He has a plan for us, and He
will see us through. We have 100% confidence
in the Lord. He has blessed us in
countless ways through our church and school families. We are blessed by many prayer warriors. Everyone wants to help, but I don’t have many
practical ideas yet, although I am going to have to do something about our
bathroom at some point. Ill cash in
those rainchecks then. J
But honestly, we are SO blessed….anonymous gifts that randomly show up
in our mailbox, meals delivered, cards, cookies, so many ways. It is so wonderful to be blessed by each
person.
Overall,
we are doing well, but there are the daily struggles and frustrations you would
expect. It isn’t easy, by any means, but
God is strong enough to carry us through, and we are blessed in so many
unexpected ways! God is good all the
time! We pray that He alone can be glorified as we walk this path. Thanks for walking it with us!
