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Monday, February 24, 2014

.....but still, I felt alone.

If you're "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you take the time to go back and review my earlier posts so you can catch up with our story.
For anyone who has been along for the whole wild ride - Thank you!

I am interrupting this story for a public service announcement.........

....but still, I felt alone.

During the weeks before mom was sent to the SNF from the ACU, I spent hours at a time on my computer researching the many afflictions mom was dealing with.  I also spent a good deal of time
preparing my blog posts.  Unfortunately, I also spent a lot of time alone; wondering if I was the only person in the world dealing with the trials and tribulations of care giving.  Logically I knew there must be hundreds of thousands of people around the world in the same situation, but still, I felt alone.

Each night I cried myself to sleep as I prayed that my mother would be OK; that life would get back to some sense of normalcy.  Each day I would straighten my back; hold my head high and carry a smile in to the hospital with me.  I didn't want mom to know how dark my thoughts sometimes became; how scared I was that she would never walk again.  I needed someplace to vent; someplace to share my worries; someplace to get advice and support; someplace safe where I didn't have to filter my thoughts or worry about offending anyone with my words.

At some point I decided that maybe I could do something to connect other caregivers that might be experiencing similar feelings, but I didn't know what.  I knew I didn't have the time or energy to get out much; it would have to be an online forum.  I had perused many sites that claimed to have just the right combination of information to help but had found that while there was information available, there still was no one to talk to; no human touch to many of the sites and I was craving that human interaction.

One night, shortly after posting to my blog, I received a message from another caregiver; and then another; and another………  It seemed that somehow I was touching people through this blog that I had started as a challenge from a friend; and accepted as an outlet for myself.  In one of those messages was an invitation to join an online caregiver group; maybe I didn't need to reinvent the wheel!  As much as I wanted to join and participate in this new group, I was hesitant and I didn't know why.

For over a year I had been interacting with a small group of friends that had become a life line for me
and while I knew they were (and are) always there for me; we had connected through a game and were now connected through the heart, I feared that my constant complaining about so many things healthcare related would hinder the closeness we had shared in other arenas.  I didn't want to lose the friendships due to my negativity and neediness.  It wasn't that these friends ever did anything to make me feel that way; quite the contrary, they asked (and still do) every day how I was and how mom was doing and they listened; offering sympathy, suggestions and advice along the way (Thank you Ian, Brenda & Sally – I don’t know where I would be without you!).  While I was continually amazed at the brainstorming abilities of this small group of people, I couldn't help but wonder about the information that could be gleaned from dozens (or hundreds) of people.

The first few days after joining the new group, my wonder turned to amazement.  Like I said before, I was sure I couldn't possibly be the only person who has faced the pains of care giving, but my heart ached as I read through the various posts from the members of this new “support” group I had joined.  I stopped reading (and sobbing) long enough to chase the maid down the hall in the hotel to ask for another box of Kleenex, I was going to need them!  Then I continued to read.  On some level I could relate to nearly every post on that board; but none of them spoke directly about the many afflictions my mother was suffering from.  Still, I continued to read.

I have to admit, at first, I wondered how hearing of other peoples experiences about other diseases/afflictions in various stages was going to benefit me (kind of selfish, huh?), but then I came to realize that although their experiences were different, they were also much the same; everyone in the group shared some commonalities.  Everyone in the group (in some capacity) was, has or is caring for a loved one; we all had questions; we all had frustrations; we all had dark days when we just didn't think we could face another one; we all had unique experiences to share; and we all had opinions!

By sharing our personal experiences; voicing our concerns; and offering our opinions, we promote awareness to those who have not yet been where we have been, while gleaning helpful information from those who have gone before us.  While I’ll admit I sometimes have some grandiose ideas, I still believe there are hundreds of thousands of people who would benefit from the amazing support I have found with this group.  Unfortunately, I am also a realist, so I know only a fraction of those people will reach out for the support caregivers so desperately need.  Hopefully some of those will be found (as I was) by someone who understands; someone who “gets it”.
It’s not always easy to share our most personal thoughts and experiences when it comes to caring for someone who means the world to us, and sometimes it’s not eloquent, but it’s so very important that we share – the good and the bad.  I have heard so many complaints from so many people about so many facets of our health care system, especially when it comes to the care/treatment of Seniors; the Mentally and/or Chronically ill; or the financially challenged, it makes me cringe to think about how many more stories there are that I haven’t heard.

Of course, there are also stories of overcoming obstacles; an outstanding health care provider going the extra mile, reminding us that humanity still exists; or a successful outcome after the agonizing decision to place a loved one in a facility for their own safety and/or well being.  Those stories, the good ones, also need to be heard – and told.

If you are (or know of) a caregiver who is feeling alone and struggling to make sense of the craziness
that we sometimes experience in this arena, please know that you are not alone.  Even if you haven’t reached a point that you feel you need outside support, my guess is that even the strongest of us will, at some time through their journey, benefit from the wisdom and support of others.  The other thing I am pretty certain of is that it’s much easier to look for something BEFORE you need it; before we are to a breaking point, so my call to all caregivers is REACH OUT NOW, regardless of the venue – online support or a community support group is somewhere within your grasp.