Denial In The Caregiver Role

For many of us, we hear the word “denial” thrown around a lot.  Working in hospice for more than a decade, I can tell you denial was a part of my work day in dealing with patients and their families.  I was generally accepting of it as part of the grieving process and I tried very hard to let individuals navigate their feelings on their own terms.  However if I am being completely honest, sometimes I was judging their use of denial and thought they should accept reality faster than they actually were.

Fast forward to the day of my husband Mark’s subarachnoid hemorrhage. I had just found him on the floor, he stated he couldn’t see and his head hurt and then I witnessed him have a full blown seizure while the first responders were trying to get him into the ambulance to get to the hospital.  This was at about 3:30am.  We generally were in the gym at 5am.  So as I was driving behind the ambulance on the way to the hospital, I drove past the gym and thought, “Mark will be so sad we didn’t get to the gym today, but we will be there tomorrow.”

                                                          Mark in his pre-brain injury form

This is a great example of denial to the Nth degree.  I laugh now, but also recognize that this was my brain’s way of getting to the hospital safely and in a somewhat composed manner.  Once at the hospital, I was confronted with the reality of the situation  and everything changed.  I learned that my athletic, intelligent, hard-working husband would likely not survive.

While Mark did survive and did better than expected through intense rehabilitation, he will never be the same, physically or cognitively.  May will be seven years since this incident and I still see areas of my life where I still utilize denial to just get through a day, week or month.

                                              Exercise now involves a seated wheeled walker

One of the areas of denial that I am acutely aware of now is the fact that I cannot keep working in the capacity I have been.  While I am still responsible for supporting us and providing for us, I need to make some changes.  Mark continues to have a decline, both cognitively and physically and the days of my being gone 10 hours a day to work are soon to be a thing of the past.  I need to focus on what is best for Mark as well as for myself.

There are several types of denial and maybe some of these are things you have used as a caregiver that you identify with:

  • Minimizing the situation
  • Avoiding the issues
  • Externalizing responsibility
  • Normalizing a situation
  • Being unrealistically optimistic

While all of these types of denial may have their place.  For example, to get you through a very tough situation until your brain can process what is happening, it’s never a good idea to get stuck there.

A great example is when I worked with hospice patients and they may be in denial about how poor their prognosis is or about how much time they actually have left.  As a hospice nurse, I always honored that type of denial when I could (and it wasn’t harmful to the patient or family) because hope can be everything to someone who is facing their own mortality. I know for myself I thought Mark would drive again, work again and just get back to being my partner.  That didn’t happen and will never happen.  I can see that now and plan around our situation.  However, if I had swallowed that pill six years ago, I may have just become so overwhelmed that I would have thrown in the towel.

So when we start to recognize that we may be in denial about our situation or a specific challenge, how can we move past it?  What things can we do to get on top of these situations that seem impossible to believe?

Examine your fears- Sometimes in the deepest parts of our souls, we have the worst case scenario rolling around and it’s almost physically impossible to bring it to the surface.  However, if you take the time to really think about what you are most afraid of, you can better prepare yourself to deal with it and move forward with a plan.

Talk it out-If you have a family member or a friend that you can be 100% honest with and that can be 100% honest with you, go to that individual and talk it out.  When someone isn’t in the middle of a situation, they often have a more realistic view of things and can help us see things that we may be too close to the situation to realize.

Journal-I know that people often underestimate the value of journaling, but hear me out!  When we can write all the things out that are rolling around in our heads, it gives us a sense of relief to unload it, it helps us to see it a little more clearly and can give us much needed perspective.  Here is the other thing about journaling.  When you have an opportunity to look back in a journal, sometimes you can see how much you have been through, how much you have grown, and it will give you confidence in your abilities that you might otherwise miss.

Support groups- This is something I think everyone should be involved in.  If you can find a specific support group for your caregiving needs, it will be worth its weight in gold.  For us, we found a local brain injury support center that provided me with so many other resources, friends for life, and most importantly a place where Mark felt like he belonged and where he could really be himself without fear of doing or saying something wrong.

                                               Taking a vacation from reality isn’t always a bad thing

Trust me, I still have many areas in my life that I am struggling to come to terms with and I know that I need to move past my denial in these areas.  However, I also recognize that I won’t be stuck here forever.  Sometimes working through the heartaches and disappointments that life hands us takes a little time.  Give yourself grace and you will be surprised how strong you really are.


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