This blog has two main goals:
- Raise awareness for the chronically ill, especially those with invisible disabilities
- Offer advice to those who care for the chronically ill
I’ve talked quite a bit about the first point in my first few
posts. Now, I’d like to say a few words
about the second objective.
In the past five or so years, I’ve learned that there is no
way you can be a caretaker without the right attitude. I don’t mean that to sound condescending, and
I’m certainly not trying to say that if you just “think positive” everything
will be OK. Life ain’t a Disney movie.
What I will say is that keeping the following general points
in mind will help get you through the day.
These are points that work for me.
I’m not trying to be presumptive and say they will work for you, but
mull them over and see if they can be of benefit to you in your situation.
And please note, every single one of these things is much
easier said than done.
1. Don’t sweat the small stuff
When you are a caretaker, every day is an
adventure. When things don’t go the way
you want them to, and they often won’t, you need to step back and put
everything into perspective. The thing
you need to ask yourself is, “Is this worth getting upset over?” My wife has a doctor’s appointment at 4. We need to leave at 3. I've taken time off and come home from work early
to give her a ride. It’s now 2:45. She’s not even in the shower. Is this a problem?
You need to objectively evaluate the
situation. As a caretaker, I’ve found
it’s critical that I detach myself from a situation in order to objectively
evaluate it and make the right decisions for my wife’s health. The trick is to do this without becoming numb
as I’ve discussed in previous posts (Spring is Here, March 1, 2015). If you aren’t able to learn this skill,
you’re going to be in a constant state of emergency, and you will lose your
mind in about 3 weeks. This skill is
essential when you are in potentially serious situations. Like when the bell rings at 2 AM and I enter
the bedroom to find my wife on the verge of a shaking incident/ writhing in
pain/ otherwise in distress. Although
my wife can’t stand my standard line of questioning in a flat voice void of
emotion (What’s wrong? Where do you hurt?
What do you want to do? Can I do
anything?) it allows me to evaluate the situation and determine if this is a
serious matter, or if it’s status quo for her situation. It’s easy to see why not going to the
hospital when she is in dire need of health care could have serious
consequences, but getting a chronically ill individual out of bed and bringing
an immune-suppressed person to an emergency room when they don’t need to be
there can create serious problems too, especially when conventional medical
doctors have not been able to help her condition thus far.
So once this judgment has been made, if
it’s a problem, you’ve gotta do what you’ve gotta do to correct it. Adapt, improvise, and overcome.
But if it’s not a problem, don’t worry
about it.
In the example above, let’s say it turns
out that the reason for the delay is that my wife felt nauseous when she woke
up, that led to her having trouble getting her breakfast, and that pushed back
the schedule for the whole day. The
nausea is not a life-threatening issue, there’s the first part of the answer.
As for the appointment, it looks like we’ll
be a half hour late. Simply call the
doctor and apologize and say you’ll be a half hour late. Work it out and reschedule the appointment
for a later slot. Most doctor’s run late
anyway (there’s a reason they have waiting rooms.) If the doctor can’t appreciate that his
patient is very ill, you might want to find a different physician.
The situation described above is not a
problem. Don’t worry about it.
2. That said, appreciate the little things
You know when apples are perfectly crisp
and they have just the right balance of tartness and sweetness? They’re the best. I just had one. It was fantastic.
3. You’re not perfect. That’s OK.
This is one of the hardest things for a
perfectionist like me to deal with. The
fact is that we are all human and we are all going to screw some things up
sometimes. Caretaking also requires a
bunch of different skills, many of which I don’t have. I do my best at what I’m good at. I try to improve at what I’m not good
at. There are going to be days when I
forget to check a food label and accidently serve my wife a food she’s
intolerant to. There are also going to
be days when I’m just not feeling it, or when I feel like just running away. People need a break sometimes. I can’t be perfect. I can just do my best.
4. Don’t worry about what people think.
Remember that doctor in the first
example? He should appreciate that my
very sick wife put forth a tremendous effort to keep her appointment
today. If he thinks I’m rude for showing
up a half hour late, that’s his problem.
5. Make a plan
I’ve talked a lot about being organized and
making efficient use of your time. It’s
very important for caretakers to develop a plan that works for them. Without one, it’s easy to feel
over-whelmed. However, when caring for
the chronically ill, on many days, that plan gets tossed out the window. When that happens, refer to Item #1.
The other important thing that is worth talking about is
literally taking care of the caretaker.
Now if you are a caretaker, ask yourself, “Who takes care of
you?” Look around. See anybody?
That’s right, you’ve got to take care of you. That’s not because people are horrible or
mean, it’s just because many of us don’t live near family, and even if we did,
there are practical limits to what people can do to help.
The analogy I’m sure many of you have heard before comes
from the airline industry. Everybody
knows the pre-flight spiel, “In the
unlikely even the cabin loses air pressure, the oxygen mask will drop form the
overhead compartment…For those of you travelling with small children, first don your mask before assisting your
child with theirs...”
The simple fact is if you’re not healthy yourself (or if
you’re gasping for oxygen), you can’t take care of anybody (or help out with an
oxygen mask). Then you’re both in
trouble.
Now nobody can never get sick. I just got over the flu last month
myself. It makes caretaking that much
more difficult. But it’s important that you
keep yourself as healthy as possible.
Here are six pointers for doing so:
1.
Avoid
sick people
That person at the office who always comes
to work hacking up a lung? He’s a
jerk. Stay away from him. When he’s healthy, make it a point to tell
him how inconsiderate he is coming to work sick. At my job, we start every meeting with a
safety moment. I was recently asked for
one, and my health and safety moment was to remind co-workers to avail
themselves of sick leave if they are sick and to not come to work ill and
infect their fellow workers. Easier said
than done for a lot of people, but it needs to be said.
2.
Eat well
Many of us care-takers are familiar with
the variety of healing diets that those we care for (I’m still looking for a
term for these folks) follow in the attempt to allow their bodies to heal. Although we might not need to be as strict
about what we eat, it’s indisputable that good health follows from good
nutrition. Often it would do the
caretaker well to follow a similar diet to the person they care for. This is also good for the morale of your
loved one who is probably sick of eating pureed vegetable soup for the third
day in a row. Eating pureed vegetable soup develops a fellowship with the person you care for. At any rate, it’s important
for caretakers to watch what they eat as part of their overall health.
3.
Exercise
Find 30 minutes 3 times a week to keep your
body in shape. This helps deal with some
of the stress of being a care-taker as well.
4.
Exercise
not just your body
Find 15 minutes a day to do some spiritual
exercises (praying, meditating, reading, etc.)
This will help. Now, I know you
work full time and then come home and take care of somebody, and I just told
you to find 45 minutes a day to hit the gym and pray. You’re probably thinking I’m totally out of
my mind right now. Well, go back up to
point #5 in the first list or re-read my Snow and Eggs post (February 22,
2015). Find ways to save time. Maybe it takes you a half an hour Monday to
cook Monday’s dinner and a half an hour Tuesday to cook Tuesday’s dinner. What if, while cooking Monday’s dinner, you
also cooked Tuesday’s dinner? It might
now take 40 minutes on Monday to make both meals, but you just “created” a half
hour on Tuesday night. Instead of
cooking, all you need to do is heat dinner up (we never use a microwave, we
always put it in the oven.) Throw the
Pyrex container in the oven. Go do what
you have to do. Come back 20 minutes
later and dinner’s ready.
5.
Sleep
This one thing is so important. Let’s face it. You have a lot to do in 24 hours. You’re lucky if you can carve out a six-hour
chunk of time to get some shut-eye. And
that 6-hour chunk is often interrupted by duty (or a tossing and turning
bedmate). But you have to make your
sleep a priority. The best advice I have
is again just planning out what you have to do, and the working efficiently and
saving 5 minutes here, 15 minutes there, to make sure you can get to bed at a
decent hour.
6.
Make time
for you
This is important too. You may not find much time each day for
this. If you get 5 minutes, do something
for you. Maybe the easiest thing to do
is just surf the net for a few minutes and check out something stupid. That YouTube clip of the Top 10 NFL Post-Game
Press Conference Meltdowns? Sign me up
(just don’t talk to me about the Playoffs?!?!?) Or fall down an internet hole
(it’s OK, we’ve all done it). Did you
know that the lyrics of the song, “The Trooper” were based on the poem “The
Charge of the Light Brigade”? Did you
know that Tennyson’s epic poem memorialized the Battle of Balaclava in the
Crimean War? Did you know the root cause
of the Crimean War was the desire of the western alliance to prevent Russia
from gaining control of the Black Sea ports at the expense of the Ottoman
Empire? Did you know there was such
place as Crimea? Did you know that 60%
of the Crimean economy is based on agriculture? Wikipedia can be dangerous. Seriously, take a few minutes at lunch or something to just read about
something that has nothing to do with health.
We’ll all have hours to spend later reading medical journals or scouring
the internet looking for things that might help our loved ones.
You won’t be able to get away every day,
but a couple times a week, you NEED to get away. This can again be done with proper
planning. Sunday afternoons between
September and January are for football, this is not debatable. Make sure you get chores done in time to ensure
you get some couch time. I also like to
make use of weekend mornings. Sleeping
in on the weekend means getting up at 6:30 to me. As this is about the time my wife usually
goes to bed, that gives me a few hours to have a leisurely breakfast, and then
get a good run in or a hike (I’m very lucky that the trailhead up the local mountain
is seriously a two minute walk from the front door.) Maybe I can’t go camping for a weekend, but I
can find a couple of hours to take a hike.
And sometimes, if I don’t have time for anything else and I absolutely
can’t get away, just take 15 minutes and sit in a chair, throw on some music, and
have a beer.
Now I am in no way encouraging people to
abdicate responsibility. Your loved one
needs you and they come first. But when
it works out, you need to take advantage of the opportunity to have some down
time. And you shouldn’t feel guilty
about it. If you’re a disaster (and you
will be if you don’t decompress sometimes) you aren’t going to take care of
anybody. If you are constantly focused
solely on your care-giving duties, you’re going to burn yourself out. It’s all about balance. You can be a good caretaker and still find a
few minutes to allow yourself to unwind.
In fact, I don’t think you can be a good caretaker if you don’t allow
yourself some “me-time”, whatever it may be.
Find the balance point, and the strategy, that works for you.
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