Tuesday, June 28, 2011

Why I Hate the Word "Caregiver"

Caregiver: (n) a person who cares for someone who is sick or disabed.  (Dictionary.com)

Female nurse Cecile Dumas bathes and dresses workman Tom Heard's eye at the Arvida Aluminum Company of Canada plant. / À l'usine Alcan Aluminium Limitée d'Arvida, l'infirmière Cécile Dumas lave et soigne l'oeil de l'ouvrier Tom Heard

Photo Credit: Ronny Jaques. National Film Board of Canada. Photothèque. Library and Archives Canada

Yes, I fit in this category.  But, I purposely do not use this word to define my relationship with S.  I use a lot of words to define my role, but not this one.  I feel it adds a sense of superiority and resentment to my side of the relationship.  One spouse feeling superior to another in a relationship spells the doom of the relationship.  Unless you've just won a really good argument. But, that sense of superiority will go away at the next argument. Anyway, S and I are equals.  Neither one of us are superior (no matter what he tells you!).

The resentment is discussed in any caregiver website you look at or book you pick up. The article listing at Caregiver.com includes articles such as:

  • A Silent Crisis: Working Caregivers Are Begging For Help
  • Caregiver Burnout
  • Depression in the Caregiver
  • Caring For The Caregiver
  • Give Yourself a Break
  • Managing Caregiver Guilt
  • Respite Care Spells Relief for Stressed  Out Caregivers
  • When and How To Say "No" to Caregiving
In other words, how do you deal with or avoid the resentment that comes with "caring" for another individual.

I've worked in the social services field for a long time before having my kids and maybe that is what colors my perception.  No matter what job I had, I was told at the onset not to expect it to be a life long career.  "You will get burned out," they told me.

Well, I plan on being with S for at least another 30 to 40 years.  I can't afford to get burned out.  So, instead of defining us as caregiver and caregetter, I simply say our roles have changed and I focus on what he can do, rather than what he cannot do.

Does resentment still rear its ugly head?  Hell, yeah, I'm not perfect.  Since his first surgery, I have taken on more and more responsibilities.  Things that he used to do without thinking -- mow the lawn, move furniture, clean out the dryer vent -- are now up to me.  Plus, the inevitable ups and downs are incredibly frustrating.  One day he has no problem caring for our 1 year old child.  The next day he can barely stand to get a shower.  Even though I understand this is the nature of both his diseases, I get tired and angry and resentful.

But, then I remember that I got angry and resentful even before he was disabled.  And, he got angry and resentful with me.  Doesn't every spouse have feelings like that once in awhile?  These feelings are temporary and will go away. 

I also remember that I'm not really angry with him.  I'm more or less angry with the disease.  S would rather help mow the lawn and play with the kids, than lay on the couch in constant pain.  It's really hard to remain angry at something that can't fight back, so I let it go. 

This is why you will rarely see me use the word "caregiver" on this site, unless I'm discussing someone else's ideas.  I am my children's caregiver, not my partner's.

Monday, June 27, 2011

About Us

Lumbar Spine X-Ray L4 L5 S1

Three years ago, my fiance, S, started a long journey to repair a herniated disc that included two posterior lumbar and one anterior lumbar fusions.  Due to his inability to grow bone, the posterior fusions never "took".  The anterior fusion was simply to stabilize his spine.  The area where the disc used to be is now completely encased in a titanium cage.  The titanium cage does not move like the rest of the spine, which puts pressure on the discs above the fusion.  The failed fusions, combined with the pressure on the adjacent discs have left him in constant pain, unable to stay in one position for any length of time and on heavy narcotics.  He will never get better without a miracle, he will probably get worse, and he's 40 years old.

In addition to his back problems, S also has rapid cycling bipolar disorder.  We have spent the last five years finding and tweaking the medicine that works for him.  Unfortunately, his bipolar medication causes his body to absorb the narcotics at a much higher rate than most other people.  And, the narcotics affect the way his body handles the bipolar medication.  He walks a very fine line, medication wise.

As anyone who lives with and loves a person with a disability knows, his health problems do not only affect him.  It affects the whole family.  As his partner (for lack of a better term), I have become an "expert" in S.  Ask me anything about his medications, how they interact, what happens when he misses a dose, his pain levels, his moods, etc., I can give you the answer.  I am his advocate, his cheerleader, his chauffeur (he doesn't drive), his nurse, his whipping bag, his spouse.   The order of these roles changes on a daily basis.  I am the person who tells the doctor how it really is, because S is so sick of talking about it and just wants it to go away.  I pick up the pieces of our life that he can no longer do along with the chores I already did.  And, I try to smile while doing it.  I am 37 years old.

I am starting this blog to help other people in my situation.  There is all kinds of information out there for caregivers for the terminally ill or older individuals.  What about those of us with small children and a life ahead of us?  How do we deal with the fact that our plans for the future are drastically changed?  How do we deal with the fact that we will be living with this for the next 40 years?  Where do we fit in? My hope is that I can be a help to other people in my situation and that they can help me.