Monday, March 30, 2015

Caring for the Caregiver

This blog has two main goals:
  1. Raise awareness for the chronically ill, especially those with invisible disabilities 
  2. 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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