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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.

Thursday, February 20, 2014

............a long three weeks.

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.

.......a long three weeks.

It was obvious that the meeting with the department heads of the Skilled Nursing Facility on August 1, 2013 had been a waste of time.  The Intake Coordinator, who had called the meeting and made many unfulfilled promises, wasn't there; the Director of Nursing had been flippant and dismissive; the Director of Therapy had been defensive and borderline combative; the Social Worker (who was brand new – 3rd day on the job) was timid, but pleasant.  Although, after some negotiating, each department representative had acquiesced to my…….let’s call them requests, my expectations were not being met.  This was going to be a long three weeks!

the light chain extension I fashioned
out of rubber gloves.

I didn't think I had made unreasonable requests, things like the commode being emptied and cleaned; a light chain long enough that mom could actually reach it; a shower twice a week (at least or as needed); someone to help dress and transport her to meals, etc.; a therapy program congruent with the goal of mom going home on or about the 23rd of August, 2013 and also to have the necessary equipment to facilitate her therapy not only while she was at the facility, but when we went home too.

It seemed moms’ goal (and mine) of going home as soon as possible following her six week check up with the knee surgeon and the discontinuance of her IV antibiotics, were not the same as the goals of the powers that be at the Skilled nursing facility; we were continually reminded that mom had 100 days of rehab that would be covered by Medicare and her supplemental insurance.  I continually reminded them that she was to have her prosthetic knee replacement in October; she would need those days once the rods and spacer were removed and she was no longer straight legged.  It seemed everything was a battle.

Although there were a couple of nurses and several CNA’s who were very good and obviously took pride in their work (I made a point to make fast friends with this bunch!), there were just as many (actually many more) who seemed indifferent to the needs of the patients (well, you know, keep your enemies closer!).  I had relocated to an Extended Stay motel about a mile from the facility.  Not only did I intend to pop in several times a day at various times (at least for a few days until I felt more comfortable), I wanted to be close in case of an emergency.  While a lot of people might interpret a true “emergency” as a LIFE OR DEATH situation, my definition was somewhat different.

While I was fairly certain my mother would not starve to death, in my mind it was an emergency when she called at 5:50PM and had been ringing for staff since 5:30 with no response, the dining room
would close in another ten minutes and she needed help to get there.  Of course, this happened before I was able to make my move to a closer hotel; there was no way I could get there in ten minutes (especially during rush hour).  As I skirted across town via the side streets, hoping to not get caught in a traffic jam, I dialed every number I had been given for the facility.  I was swearing like a truck driver when I dialed the last number.

Finally, at Six O`clock straight up, someone picked up the phone.  As calmly as possible I explained my plight and implored the very nice lady on the other end to help.  She assured me that everyone had been taken to the dining room and then made the mistake of trying to placate me by saying, “Don’t worry, your mom will be well taken care of here”.  I almost drove off the road as I screamed in to my phone, “Not everyone has been taken to the dining room, MY mother is still in her room”.  The oh, so sweet voice on the other end of the line made me have visions of wrapping the phone cord around her neck when she said, “I’m sure your wrong, but I will have someone check”.  As graciously as I could, I thanked her just as I pulled in to the parking lot.  I stepped off the elevator just in time to see mom being wheeled toward the dining room; everybody else was heading in the opposite direction.

The CNA who had taken mom to the dining room stopped at the nursing station where I was letting it be known, in no uncertain terms, that what happened that evening was totally unacceptable.  It was clear
that the nurse I was unloading on did not understand why I was so upset, in fact I wasn't sure she understood anything I was saying as she stood there smiling at me.  The CNA stepped in and said something to the nurse in a language I wasn't familiar with.  The nurse quit smiling and quickly busied herself with another patient as the CNA turned to me, shrugged her shoulders and with a smile of her own said, “Sorry, I thought your mom had decided to eat in her room when she didn't come to the dining room.”  The aide visibly flinched and took a step back when I glared at her.

I’m sure the aide thought I was going to hit her; and for a brief second I thought so too.  Somehow I managed to focus and knowing that, for the time being, I was stuck with the situation as it was, I tried to explain my anger as politely as I was able.  “My mother isn't able to get herself to the dining room; the bathroom; or even out of bed, that’s why she’s here.  I also don’t understand why you would just assume she didn't want to go to the dining room, or what you thought she was going to eat in her room.”  I was rewarded with a blank stare and a “sorry again” before I turned and headed towards the now closed dining room where my mother was sitting all alone waiting for them to find something for her to eat.

Mom was fighting the tears as she explained that since she was late getting there she would have to settle for whatever they had left.  I knew it wasn't because she was getting chef’s choice that mom was
upset.  I also knew it wasn't because she hates to eat alone, which she does.  There was a lot more at play here.  Mom was scared that we had made the wrong decision in bringing her here; I shared her fears, but kept them to myself.  I tried to console her by reminding her that she hadn't been there very long and I was certain things would smooth out, I tried to stay positive.  “They just have to get to know you”, I was trying to convince myself as much as I was mom.

I sat with mom as she picked at something unidentifiable on her plate.  Mom hadn't had her food for
more than 5 minutes when that same aide wandered back through the dining room; “You’re still here?” she barely looked at us as she walked through tapping on her cell phone.  A half hour later I wheeled mom back to her room and helped her get ready for bed.  Since I knew mom was suppose to call before getting up, I pressed the call button and after waiting nearly fifteen minutes, I continued helping mom with her nightly routine.

After her teeth were brushed, her face was washed and her face cream applied, we waited for someone to come help her up to the bathroom and into bed........and we waited.  I pushed the button again and we waited......and waited.  Finally I decided that I would just do it myself.  When mom was finished with the bathroom, I helped her in to her bed and made her as comfortable as possible.

The next thing I knew I was being scolded by the nurse for getting mom up without calling for help.  "But, we did call.  No one came", I countered.  "Here's your pills", the nurse handed mom the cup full of pills and glared at me and said something to the effect of, "she's not the only patient we have".  "I have to watch you take them", the nurse said as a way to hurry mom.  Mom smiled condescendingly and asked, "Could I have some water, please"?  The nurse huffed out of the room, presumable for water, and we waited......and waited.  You think there might be a pattern here?

This was going to be a long three weeks!