Selfishness

Over the years I have been very open about the medical issues that have impacted my life.  I have always advocated taking care of yourself, as well.  For the past year my father has fighting the uphill fight with cancer.  Due to many factors treatment options have been limited and we are now at the end of the road.  I am not sure how much longer we have with him, and frankly I don’t want to know.  Over the past month or so we, my family, have made sure to make every minute count.  We have taken extended out of town weekends, we celebrated his birthday in style… 

Unfortunately he past two weeks have been extremely difficult on the cancer front.  My mom and I provided round the clock care for him (give me a second and I will address hospice) which can be exhausting.  Hospice has been brought up multiple times, it is an option to ensure the end of one’s life is as comfortable as possible.  From my understanding, the issue with hospice is once it starts most other medical care stops.  While it is in the home it is still not around the clock care, nurses and CNAs (among other individuals) come in on a regular basis every week to help care for the patient.  This is something we have discussed but there are still medical treatments that are being utilized for my dad (not directly related to cancer, but definitely an indirect correlation).  So, we do have in home care involved, just not to the hospice level. 

Now, what does all of this have to do with being selfish?  A lot!  I take great pride knowing I am helping my parents through a very difficult time but I also know I need to take care of myself otherwise my lupus with stop me dead in my tracks and I will be of no use to anyone and I will need someone to care for me.  I have sat down with my mom and broken the day up into sections.  I take this time off and she takes that time off.  I could care less if she sets up a lawn chair in the front yard and takes a nap or goes and gets her hair done.  My time can be used for beating the snot out of a heavy bag or going through the drive thru at Dutch Bros getting my fill on their amazing coffee!  As a caregiver it might seem selfish to take time for yourself but nothing could be further from the truth.  If you do not take care of yourself then you are of no use.  So caregivers… be a little selfish!!!!

Put your heart, mind, and soul into even your smallest acts. This is the secret of success.

–Swami Sivananda

When is it time?

Prior to deploying service members are asked questions that most people their age do not even consider.  This questions are addressed again when chronic illnesses and/or advanced age come into play.  These is NOTHING pleasant about this conversation, but it is one that everyone needs to have with their loved ones. 

I have been chewing on this for the better part of the day (actually, it has been a lot longer but), at what point is it time to… call it quits? You’re not quitting anything.  Admit defeat? Nope, that’s not right either.  Move on? What do you call it?  How do you determine when it is time for the doctors to stop doing everything in their power?  How do you…??? It is not an easy place to be but it is something that needs to be communicated.  Advanced directives are important.  It might save your family from the guilt in knowing they “killed” you, when in fact they did not, they were truly doing what was in your best interest.  I mean it is easy to say ‘if I’m brain dead, pull the plug.’ There are so many more factors that need to be taken into consideration… If you are in constant unmanageable pain, is that your limit?  If you suffer a stroke and you end up with lock-in syndrome, would that do it?  Would you do what Brittany Maynard did? These are all facts that should be discussed as a family (whether your family is blood or people who have come into your life and are there for you through thick and thin).

As a lupie, these are decisions that are I have thought about and discussed with my family to a certain extent, but nowhere near to the level it needs to be. 

Put your heart, mind, and soul into even your smallest acts. This is the secret of success.

–Swami Sivananda