Monday, January 7, 2013

Decisions in Caregiving

Everyone makes decisions day in, day out.  Small decisions (hmm, should I really eat that piece of chocolate right now?) to big decisions (which school should I send my child to?) to everything in between.

(Of course, the answer to the first question is always: Yes! How can I turn down chocolate?)

Decisions in caregiving can be much more serious with the possibility of significant consequences. 

What treatment should I get for my caree?

Is it time to step in to help my loved one or is it too soon?  Will they want my help or see it as an intrusion?

Is it time to find a care facility for my family member?

Do we try new medications to help with [insert condition/disease/disorder here]? 

In Robert’s case, he was on the same medication for years and still having seizures.  A few months after I took over his care, I not only had taken over his care after he lived independently with slight family oversight for years but I had moved him to a new city, placed him in a care facility, changed his neurologist and primary care physician.

Quite a few decisions which were not made lightly but which could have involved dire consequences if I hadn’t stepped in when I did.  (Short version: Robert and his companion had taken in a homeless woman to live with them and she got into a physical argument with Robert, giving him a black eye.  Other Brother and I got the woman out of the house and, because of a series of other events (recurring infections, the main one), Robert was moved out of the house he lived in for 20+ years.)

Long version can  be found here.

Did my Other Brother and I act too late?  Should we have stepped in before Robert got all those infections and the black eye?  Or did we act too hastily in not letting Robert live independently any longer? 

The timing of these types of moments is never lit up on the calendar with a big arrow pointing to a date and a note saying, “THIS is the day to step in.”

No.  We have to make decisions and we grapple with them and sometimes caregivers still question whether or not this was the time to step in with more help.  Or try the new treatment.  Or place a loved one in a care facility. 

Shortly after starting with a new neurologist, she had a great plan.  Let’s try New Meds!  The seizures may be stopped with this New Med!  The New Meds just came on the market and could work! 

After 45 years of Robert having uncontrolled seizures it was hard not to get caught up in the excitement.  A medication that might relieve Robert from having seizures?  I was reluctant to try something new because even though he still had seizures, he seemed stable enough.  However, I agreed. 

This was three years ago and he was on the new medication for a short amount of time.  Unfortunately, he had such a reaction to the medication (losing his balance, actually not being able to walk), he landed in the hospital. 

Okay, not the best decision but that’s how decisions in caregiving go.  We grapple with them and sometimes they work out and sometimes they don’t.  Robert was immediately taken off the New Med and left on the medication regimen that we know worked as well as could be hoped.  Robert’s balance continued to suffer so we made the decision to get him a walker which he still uses.

Other caregivers go through decisions about placement or treatment every day, giving them great thought, care and always, always doubting if it’s the “right” time or the “right” decision. 

I have invited a few fellow caregivers to be my guest here and share with you the decisions they are wrestling with now.  Over the next week or so, we will share what they are going through when making caregiving decisions. 

I’m interested to know what decisions have you had to make for your caree, your loved one.  Please share in the comment section below or contact me at if you're interested in sharing the struggle you've had with a caregiving decision. 

Now, about that chocolate . . . decisions, decisions. 


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