New Roles

Robin
Rocky Mountain Stroke Survivor

February 22, 2013

On the surface, it may seem to others that nothing has changed.  Brain injuries (including strokes) are invisible, out of sight, and usually out of mind.  Those of us with brain injuries usually look pretty normal.  Unfortunately, most people with brain injuries are injured enough to have trouble speaking out for themselves.






I’m here to say that no matter how functional someone with a brain injury appears, something is different, something is harder, something has changed.  I am struggling mostly with dizziness; and with appropriate accommodations I can do most of the activities I once did (though not at the same rate I did before).  But I will be the first to tell you that everything has changed.

This truth is perhaps most obvious in the new roles my husband and I have.  Overall we have a very good relationship.  That said, our one ongoing argument over the years has been about who takes responsibility for what.  I have nagged and complained because I felt that I “had to” take responsibility for “everything.”  He complained back that I didn’t “let him” be responsible for things.  I replied that nothing was stopping him…I only stepped in and took care of something at the eleventh hour when he still hadn’t done it.

That argument doesn’t make sense in our new situation.  I simply can’t physically muster even half of what I used to do.  He is now, by definition, my “caregiver.”  (Or on websites from Great Britain, I’ve seen the role labelled as “carer.”)  There is no question of who is responsible.  He is.

Here’s from a great resource: The Stroke Caregiver’s Handbook by Joyce Dreslin.

Stroke Caregiver: An Unwelcome Job Opportunity 

It’s not a job you apply for. Chances are, if already employed, you don’t need or want another job, much less this one. Usually you have no prior experience, you don’t know the language, you don’t have the proper tools to do it, the pay isn’t compensatory to the task, it may come at a time in your life when you don’t have the energy required to do the job well, you may be expected to do it without giving up all the other jobs you may have, but there IS job security – as it may last forever! 

It’s like you’re on your way to the restroom at the theater on opening night, and someone says, “YOU!” The star is sick, the conductor hasn’t shown up, the stagehands have gone on strike, and you’ve been tapped to step in and make sure the show goes on for 20 years. If you don’t, someone dies (or so you’re led to believe). Caregiving isn’t like parenthood where you have had nine months to prepare. You were once a kid, and you’ve seen millions of parents in the act of doing their job prior to having to do it yourself. And it’s not a decision you can just say no to, like when you were threatened with not having your kid in Scouts unless you became the scout leader. So? The kid can play soccer and not be a Scout. This is a bigger deal. Stroke offers few options.  Suddenly you’re front and center stage in the wrong outfit and totally clueless.

I read this to my husband and he said he could relate.  Because I can function normally in the right setting, it’s hard for me to step into my new role of being cared for.  I do not for a moment consider myself a “victim.”  Horrible word.  That said, realistically speaking, I need my husband to not only take care of everything extra I can’t take care of, but also ensure that my environment is such that it allows me to function the best for the longest period of time.  This means he must make sure meals are ready on time, surfaces are cleared of clutter, the floor is clear of toys and furniture arranged such that I don’t fall, the children are cared for while I sleep in late in the morning and take a nap in the middle of the day.  A “normal” person doesn’t need their spouse to do all these things for them. I was comforted by these paragraphs from the same handbook:

Remember our mantra of the early chapters: No two strokes are alike? That meant that we couldn’t put a pattern down and trace exact methods guaranteed to work towards recovery or figure out just when everything was going to occur. We used terms like “expected to,” “probably,” “may,” and “in all likelihood.” But when it comes to leaving rehab or hospital care and coming home, the following statement has no such flexibility. We even use the forbidden term “never.” You can bet the farm on this one: Life after stroke will never be the same as life before. It’s guaranteed…. 

It also doesn’t matter how much recovery has or hasn’t taken place or how much recovery can be expected to take place through therapy or with time. At this time, however, we can repeat it with absolute and irrevocable certainty. Even if the patient has a seemingly full recovery, life will not be the same after the stroke as before.

To those not in this situation, this might not sound very comforting.  But to me…I feel almost normal, within a certain definition of normal.  These new roles are expected.  And neither is desirable.  That said, we’re doing this dance, figuring out these new roles because we love each other and our children and are determined to make this work.  I’ll finish with one more piece from the handbook:

You got this job as caregiver because you love the person who has been affected. This love will make you very observant, sensitive to the *patient’s wants & needs, and carry you through the darkest hours. Even though you didn’t train for this job, you’ve been tested mightily and have obtained an encyclopedic knowledge, so you can become an outstanding caregiver. You can’t go wrong if what you do is done with love for someone you love. Believe in yourself and know that it’s within your power to do whatever needs to be done. We know you can. We’ve all done it.

Thank you my own caregiver for all you do.  I love you and am so glad you love me enough to take on this new role, even though it is difficult and largely thankless.  Please accept this thank you for all the times I forget.

* Just a note, I would avoid referring to your loved one as a “patient”.

See the original article:

New Roles

in

Rocky Mountain Stroke Survivor