Helping to Preserve Dignity and Autonomy

Imagine one day you wake up and despite your years of education, work experience, and raising a family, suddenly your every choice and direction in life is being decided by another adult.  Maybe that other adult is a stranger or maybe they are a family member.  It would be soul crushing!  To have lived decades and built the life you wanted for yourself then suddenly, it is taken away from you just like that.

For those with a traumatic or acquired brain injury with long-term effects, that is exactly what they live every single day.  Not only do they lose the life they have built for themselves, but they often also lose their careers, friends, hobbies even sometimes they may lose relationships with family members because of their discomfort with seeing their loved one as this new person with a brain injury.

Personally, I have seen this exact scenario in my own life with my husband Mark.  After he had a subarachnoid hemorrhage due to an undiagnosed genetic disease, he went from working full-time, PhD student and athlete to completely dependent on everyone for everything.  In those early days, Mark was not able to even walk to use the restroom independently.  While many family and friends came initially to visit, those visits, texts, phone calls and cards have stopped.  Mark’s great big world and productive life he had built for himself was gone.

In the years of being Mark’s wife and caregiver, I have tried very hard to focus on making sure that he remains independent in the things that he is able to do, in an effort to preserve his autonomy and dignity.  Trying to let him control the things he can and allowing him to participate in decisions for his life has helped him to remain happy and thriving.

Being 100% honest, it took me years to get to this point.  My anxiety about Mark getting hurt or something bad happening had me on the edge of my seat everyday.  I was always over him, trying to manage and supervise everything.  Then I noticed how my actions and attitude were condescending and hurtful.  Yes.  Mark had a brain injury and did have cognitive deficits, however he was still a grown man and my husband and partner.  I knew I needed to make some changes.

For those with brain injury, including traumatic or acquired, like a stroke or disease process, their ability to make decisions can be impaired by multiple things.  Where the injury is in the brain will impact their ability.  Frontal lobe damage, like Mark has, can decrease the ability to access the things needed to make a decision.  If your loved one has issues with long-term, short-term, working memory and emotion, it may be more difficult for them to make decisions like they used to.

Here are some of the things I use daily now with Mark to ensure he is still participating in our household decisions and decisions regarding his own care and goals.

  • Keep the choices simple
  • Limit options
  • Slow down with your speech
  • Allow time to decide
  • Remove distractions
  • Review options prior to having to make a decision

I will use Mark as an example for the above suggestions.  Let’s say we are going to a large social event.  I know that the people and noise will make Mark very tired very quickly so I know that I need to help him formulate a strategy prior to the event.  Our conversation may go something like this:

Me: We have your family Easter dinner Sunday.  Would you like to go right when they are ready to eat or go a little early to visit?

By asking him this question in this way, we are not in the middle of the party with him trying to decide if he wants to spend more time visiting or eating.  I’m also keeping the choices simple, arrive late or early.  I’m asking him well in advance to give him some time to think about what’s most important to him.

You can use these for any scenario, if it’s something fun like a party, or something more serious like a medical decision or treatment.  The bottom line is, we want to ensure that even though our loved one cannot make all their own decisions, they can still participate in some of their decisions.  This will decrease conflict, increase self-esteem, all while taking the burden off of you, as the caregiver to make every last decision.


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