Decision fatigue can creep up on caregivers. I know when I
can’t even decide what to make for dinner that my decision making ability is on
overload. (I usually end up choosing breakfast for dinner at that point – easy and
comforting!)
The pandemic has added even more decisions for caregivers to
make.
Shortly before the stay-at-home order in California, I made
the decision to keep Robert home from Day Program. They hadn’t yet closed but he
is prone to pneumonia and it is virtually impossible to social distance at Day
Program.
I decided it was safest for Robert to keep him home.
There’s no set reopening date for the Day Program but, at
this point, I can’t send Robert back. Not any time soon anyway. He loves being
with friends but I can’t jeopardize his already precarious health. I am not worried
about his lack of socializing since, with the three of us home, Robert is more
engaged in our conversations, enjoying watching shows with Richard while I work
from the home office and loves petting Taz while telling him “I love ya a lot,
Taz” several times a day. He sleeps in when he needs to and can take as long as
he wants to eat a meal (now clocking in at close to three hours – per meal!).
As an added bonus, my conversations with him involve phrases other than “hurry
up, we’re late!”
For over two months, I decided it was best not only to keep
him home from Day Program but also his weekly Physical Therapy appointments. However,
I thought he would be fine since he walks more at home than he does being in a
wheelchair all day at Day Program.
After about two weeks at home, though, he was having more
trouble with his balance and with his legs “working.” Things got worse as the
weeks went by. It took both Richard and I to get him out of the recliner to
stand. It took both of us to help him walk down the hallway, all the while
telling him how to walk and sometimes patting his leg to “cue” him. We had to
literally tell him how to move.
Move your right foot.
Move your left foot.
Keep your head up.
Push the walker.
Move your right foot.
Move your left foot.
Keep your head up.
Push the walker.
Robert’s brain was having trouble communicating with his
legs. I worried that it was because I didn’t take him to PT; I worried that it
was permanent; I worried I would no longer be able to care for him like this.
I talked to his movement specialist and she thought it was a
progression of his Parkinsonism. She felt going back to PT might help.
I wasn’t convinced it would be safe to take him so mulled it
over a while longer.
Soon thereafter, Robert fell three times within a week. The
third time landed him in the ER to get checked out (nothing broken; no
concussion).
I called PT to see what their protocols were so I could
weigh the risks. They provide everyone with masks, limit the number of people
in the waiting room and gym area and thoroughly sanitize after each patient
session.
I decided it was time to get him back to PT.
He was happy to return to “work out” and I was happy to
learn that he still had muscle strength so I didn’t need to feel guilty about
not taking him to PT.
(Guilt is so often an unwelcome companion of
decision-making.)
The therapist mentioned that he should be sitting up instead
of in a slouched position which makes me think the recliner might have had
something to do with exacerbating his decline. I also decided to slightly
reduce one of his anti-seizure meds that I know affects his mobility. It had
been increased to the current dose in January but maybe a slight reduction
would give him the “boost” his brain needed. The risk is that we will see an
uptick in his seizures.
I have to decide between mobility and an increase in
seizures.
For now, Robert is going to PT weekly again, his problematic
medication was slightly reduced and he does not sit in the recliner
(thankfully, he hasn’t even asked about it!).
All these decisions have helped. He is still not as mobile
as he used to be and I haven’t dared see if he can walk down the hallway yet
but he’s better at transferring and standing up.
With all the mobility issues, I decided to let go of his
daily showers since he doesn’t have the stamina for that and I let go of the
idea of putting him in pants and a shirt every day since I don’t have the
stamina for that. Some days he is in pajamas all day and that’s fine for both
of us.
These are just a few of the decisions Richard and I grapple
with while caring for Robert during the pandemic. There are others, of course.
Do we all wear masks when we venture out? (That’s a resounding yes.) Do we go
out to eat? (No, that is not a good decision for us right now.) Do we order
take-out? (We didn’t for a couple of months but we do occasionally now.) Do I
keep Robert’s non-essential medical appointments? (No, it’s only essential
appointments for now, of which PT is included.)
Caregivers make decisions every day, all day long. They may
not be the decision that other caregivers would make but each caregiver knows
what is best for them and their loved one.
What works for someone else may not work for you. Sometimes
we might even make a decision and then change our mind! That’s allowed!
And sometimes you can give your brain a break and let
someone else decide what is for dinner (let me help you: breakfast for dinner
is always a good decision!).
