April 12
I have a hard time answering people when they ask how Rob is
doing. I sooooo appreciate their asking
(so don’t stop), but I have a hard time knowing exactly how to answer. I want to be real. To be honest and truthful and descriptive –
so that others understand this disease and what our life is like. However, I do not want to merely sound like I
am whining about things or complaining about symptoms that are out of Rob’s
control. I don’t want t sound like I am angry with him or throwing him under
the bus. But I do need to attempt to be
real and honest about his symptoms. There is a fine line to walk between
complaining and explaining. It is one of
the reasons I have not started a Caring Bridge page, and also why I do not
update this blog as often as I should.
But…here it is, already April, and I said I would try to
keep everyone updated more often.
In mid-February we upped Rob’s antidepressant. It was an immediate relief from the
negativity, the curtness, the misguided anger, the constant criticism and
complaining, and the general hatred of everything and everyone. What a relief! Rob is still confused, but at least it is a
happy confused.
His cognition levels have declined substantially. He is much
more confused. He has a difficult time knowing what is going on around him or
understanding a conversation. Combined
with a constantly fading memory, he has a hard time. He has a very difficult time communicating –
partially because his cognition level most often about that of 3 or 4 year old –
but also because he slurs his words or talks in circles.
Because of his difficulty swallowing, I have been making him
smoothies for breakfast every morning for the past 2 years. For the past month, every morning he asks me
“what is for breakfast?” I try to make
him exercise his brain, so I answer with a question, “what do I always make you
for breakfast?” Some days he will again ask
me what is for breakfast fifteen to twenty minutes later. We will have our normal morning routine, and
just as I am leaving for work, he will ask me if I am going to work. His questions are very repetitive, and they
are all things that he knew a month ago.
In the past 2 weeks, he has rapidly declined. He repeats the
same phrases over and over throughout the day.
Last week Thursday (April 9), I was tempted to tally up how many times
he said the same phrases. It is almost
like he wants to have a conversation, but he doesn’t know what to say, but it
is also as though his OCD/repetitive actions include repeating the same phrases. Quite often, he is simply repeating the same
thank you phrases. Thank you for making
smoothies. Thank you for cutting my hair
(I cut it 10 days ago). What is for
dinner? Thank you for cooking. There is a bird. I see a robin.
During the past 2 weeks, our daily conversations follow
along these lines. I get up, do devotions, clean the kitchen, check my email,
say goodbye to Heidi, then go in our room to get him ready for the day. He will be dead to the world snoring, but when
I walk in the room, he panics and throws the blankets around, “Issssittt
sshhshshwer im?” (Is it shower time?)
Yup. He jumps out of bed – but doesn’t have his balance yet and often
weeble-wobbles into furniture and walls, then sits back down and takes his
socks off while I get things ready for the shower. He will eventually stumble into the bathroom
while I am running the water to get it the right temperature. Some days he will say “I’m not going to
church today” even if it is a weekday.
Other days he will go about his normal routine and into the shower we
go. Yesterday he took a tumble in the bathroom doorway, and was in such a hurry
to get up, that when I helped him up he started tipping over backwards the
other direction. I’ll have to watch that
more from now on. Into the shower we go,
and “thksssss frrrrrr hrrcit” (Thanks for the haircut). Again…it was 10 days ago…I appreciate that he
is grateful!! For sure! But it is like he
doesn’t know what else to say. He knows
that when he gets in the shower, he says thank you for the haircut. Sometimes, he thanks me 2 times for the
haircut in one shower. Most of the time,
we shower with little to no conversation. Somedays he complains about things or
asks what I am making for breakfast (smoothies, remember?). Turn off the water, puts the towel on his
head, and “thkkkssssss agin hrrrrrrcit” Yup.
We go through the morning routines of getting ready. He will
often ask about breakfast while getting dressed, or complain about a certain
pair of sweatpants. I need to hide them
so he doesn’t drag them out and complain about them! I move to the kitchen, make his smoothies,
pack my lunch and work bag, then I make sure he is ready for the day. I remind him if it is a Meals on Wheels day
or tell him what his lunch options are in the fridge. He turns the radio on to the Christian station
(loudly), puts on his Carhartt vest (he is always cold, so he wears a shirt, a
heavy fleece pullover and a carhartt vest with wool socks and slippers for
inside the house) and he sits on the couch with his smoothie. Once I know he is
good to go, I take off. Some days he
will not have anything to say. Some days
he will say “thkssss frrrr ssssssssmmmmmmmthsssss” (thanks for the smoothies)
3-4 times before I leave the house.
He will also look out
the window and tell me if he sees a bird and then try to tell me what kind of
bird, but he struggles to come up with the right name. He likes the mourning doves that frequent our
yard, but 2 weeks ago forgot the word dove so now he calls them his morning
birds. If it is sunny, he says, “I like
sunny days.” If it is snowing, the same, “I like snowy days.” But some days, he
does not say a word, even when I tell him goodbye and to have a good day. (Or, he will say, are you going to work?)
If I am at work, I don’t hear from him until 3:06, when I
get a text “How’s work going today?” I
get this text every day at the same time, even if I am not at work, if I am in
the kitchen working from home, if it is a weekend and Heidi and I just left the
house to go to the store (and told him where we were going), or I walked
outside to get the mail. No matter what
I tell him in my response (I swear I could say there is an angry grizzly bear
in my office) he always replies with “okay dokey artichokey big fat blokey
smokey” or a combination of those words.
He used to send a “what’s your 20?” text every 5 minutes starting at
3:30 or 4:00 until I got home, but then I explained that I don’t want to text
and drive, so he has not sent one in a while.
If I am working from home, or we are trying to do something
(I took a day off last week and drove everyone to Radersburg for a day outside
the house), he will repeat, over and over, all day long thanks for the haircut,
thanks for the smoothies, I like sunny days, the Bridgers look nice (even when
he can’t see them), there’s a cold breeze, etc.
Some days we get upwards of nearly 20 times per phrase per day. It can be 90 degrees, stifling and a barely
there hot whisper of a breeze or 30 below zero and no wind and he will say,
“there’s a cold breeze” or “it’s too windy.”
In the evenings, I cannot even walk in the door from work
without him asking who I am and what is for dinner. Multiple times. He has to eat at 5:20 on the nose. No matter
what my answer is, he will say he can’t eat it because it will make him choke –
even foods that he regularly eats and can eat with no trouble. He will thank me again for the smoothies and
the haircut. He chokes a little during
dinner, which makes his nose run, so he tries to blow his nose (he really isn’t
coordinated enough anymore), then he tosses his used Kleenex on the dinner
table where the food is set and we are eating, then always says “I’ve had a
runny nose for 4 years!” Or he will start complaining about the neighbors cars as
they drive past the window and why they are terrible people because they have a
loud car or a sled deck or whatever. It
all comes down to someone waking him up from his afternoon nap and he will hold
it against them for the rest of his life.
Before we even leave the dinner table, he will ask me to
change his socks. I’m obviously not
changing them during dinner, but he knows I will change them after dinner, so
as soon as we are eating or getting close to finishing dinner, he starts asking
about changing his socks. I clean up the
dinner mess and the kitchen, then change his socks. He will then say “thkkkssssss chin
ssssckssss” (thanks for changing my socks) a minimum of 3 times before he goes
to bed.
His watch beeps at 7 and he stands up and says “its pee
time”. It beeps at 8 and he says
“itssssss snck time” Last week for 4 days in a row he said, “well, are you
going to get me a snack or not?!” um…definitely not with that attitude buddy –
besides right now his 8:00 snack is a glass of chocolate milk that he is capable
of pouring. I hope it does not sound as
though I am being harsh or mean or unwilling to help him. I usually do help him…but even the doctors
and his old physical therapist and occupational therapists always said that
when there are things he is capable of doing, he needs to continue doing them
as long as possible. As soon as he stops trying, it is a task he will lose
forever.
There are certain tv shows he likes to watch in the
evenings. He won’t watch tv all day, but
that’s the only thing I can do to entertain him in the evenings. His headaches are worse in the evenings, and
if he is tired, so is his cognition. I’ve
tried games and stories and used to read him books, and lots of different things,
but he is pretty well done for the day. I
try to keep funny movies and outdoor adventure type shows running in the
evenings. About a month ago we watched a
Jackie Chan movie, and he always plays his bloopers at the end of his movies.
Someone was supposed to say turtle, but they said turkey. Rob says, “Yeah, turkeys are okay, but they
have color vision and something something about turkeys. I like blue birds.” We cannot follow his
thought process, but at least it was happy.
Some days he sits and complains about the people on the
shows to no end. We are watching a
hunting show and he started yelling about sleeping in tents and it’s cold and
he hates it. (he never hated sleeping in tents before) So I tell him, well, no
one is asking you to sleep in one, so you don’t have to worry about it. He
yells, “I’m not doin it!” then he starts saying that the guy on the show is a
horrible person and a horrible hunter because he shoots a hoyt bow and blah
blah blah. I turn the tv off. He starts yelling at me something about a
snowplow. “What?” after that basketball
game!!” “What about a basketball game?” “AFTER that BASKETBALL game! You did
it!” I have no idea WHAT he is yelling about. Then he starts yelling about
where I am going to sleep.
I have been having a terrible time sleeping in bed with
him. He takes up the whole bed –
sleeping like a starfish – and then spends all night hitting me, kicking me,
slapping me upside the head and shoving me out of bed. I “sleep” on the very edge of the bed as far
down in the bottom corner as I can and even then he is violently smacking me. I
have a constant headache from clenching my teeth all night (and that’s with a
dental mouth guard) and my shoulders are both going bad from balancing on the
edge of the bed. So, out of the blue, he told me I could sleep on the couch. I was in shock. I had been planning on trying to have a
discussion with him about our sleeping arrangements, but needed him to be in
his right mind – if he is talking about bluebirds and sunny days and 10 day old
haircuts, I can’t have a discussion with him.
I slept like a BRICK. He said he
slept fine because I turned the heated mattress pad way up without me in
bed. I slept on the couch a second
night. MARVELOUS, glorious sleep. Then he went into this tirade about me
sleeping in bed and how he needs my body heat.
So, I lay in bed now…I have to take a benedryl or Nyquil or something or
I don’t get any sleep. He talks at me
(usually yelling at me in a whisper) about something all night long. I can’t hear him or it doesn’t make
sense. One night he woke me up from a
dead sleep, calling me horrible names, and accused me of hitting him 3 times in
a row. I was sleeping on top of my arm
to keep from falling off the bed…so….??
I can’t be mad at him. He doesn’t
know the difference between his dreams and reality. OR tv and reality. Or a story he heard one
time and reality – OR that it happened to someone else and not him.
BUT….now I’m off topic and in danger of complaining about
things he cannot control. The main point
of this was to describe his cognitive declines.
As I tuck him in, he will either say “thanks for the
smoothies” or thanks for breakfast or thanks for the haircut. Sometimes he will tell me that I need to go
to bed right now (he goes to bed at 9, I need to stay up and finish chores,
talk to the kids, get on the computer and do my job remotely, etc.).
He has so many mental lapses. He can barely have a conversation other than
his repetitive phrases. Sometimes he can
try to tell a story, but he starts a story and goes down 8 or 9 rabbit holes
and we never get where he started going.
I miss being able to talk to him.
He has no clue what is happening in the world or our lives. I try keeping him up to speed but he doesn’t
understand. Every day he asks about
church, the pawn shop or other places and I keep telling him they are
closed. I mean – Cody is home all day
and not at school but he still doesn’t know what is happening. It would be lovely to have my Rob back so I
could talk to him more than “Thanks for the haircut and I like bluebirds.” Or
describing what he sees out the window every 5 minutes. “It’s snowing.” “It was snowing but now it
stopped.” “It’s snowing” “It’s sunny, but it should be snowing.” “It’s snowing
again but it was sunny.” “I like sunny days.” “I see a bird.” “I like morning birds”
“It’s snowing.” “Is it tax season?” (His friend Ray was here 2 times to pick up
and deliver our tax paperwork) “Thanks for the smoothies this morning.” “thanks
for the haircut”…
I have been working from home more than usual…but when (if)
things ever get back to normal and Cody is at school and Heidi is working…I’m
going to have to have someone come keep him company during the day. Companion care, in home care, whatever – he
is not able to keep track of what is happening around him. Most days he has the
cognition level of a toddler or pre-schooler, but he has the physical limitations
of an elderly person. That is the truth of where we are right now.
No comments:
Post a Comment