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Thursday, May 5, 2016

Would we?

Thank you for continuing to follow our journey. Since my mother's passing, it has become more important than ever that I continue, it is also more difficult than I ever imagined. Mom and I discussed my blog often and she always encouraged me to share the WHOLE story, but even with her unending support and encouragement, I felt somehow the sharing many things would strip some of the dignity I struggled so hard to help her preserve. I made a promise to my mother that after her journey home to The Lord I would reveal some of the more personal "stuff" about my role as a carer and hers as her need for care increased. 

As usual, mom was exceeding expectations in therapy and a discharge date of
September 10, 2014 (11 days following her most recent major surgery) was prominently posted on the white board in her room when I got to the hospital on the 3rd of September.  I was pleased at how well mom seemed to be bouncing back, but leery she might be pushing a little too hard.  Of course, I didn’t voice my concerns to mom because I didn’t want to discourage her in any way.

Mom was almost giddy as we made plans to finally go home.  We had a great afternoon and I loved seeing the smile on my mother’s face as she showed me different methods of transferring she was working on in therapy; her eyes lighting up as she moved herself from the bed to the chair.  Mom didn’t seem the least bit tired after all the activity that day.   

I, on the other hand, was exhausted.  I was also irritable.  There is something about spending hours on end visiting someone in the hospital that is, in and of itself, tiring.  Since I also suffer from insomnia, to the tune of sleeping maybe 2-3 hours night, I was completely wiped out!  I needed to recharge and I just couldn’t seem to make myself relax.  There was always something that needed taken care of; planned for; or executed.

While I was also very excited to get home after living in a hotel room since early July, I knew it wasn't going to be easy to coordinate the trip back home, but I wasn't stressing too much about that as my older sister would make the 5 hours trip over to help us make the trip back.  There was simply no way to get mom and her essential medical equipment AND all our stuff back home in one car.  Then my mind shifted to all that had to be done once I got her home.

Doctor's appointments; Home Health; medications; more home modifications and medical equipment to accommodate mom's ever declining health........  The list just seemed to go on and on in my head; everything seemed urgent and I was feeling overwhelmed.  I felt like I was going to lose my mind and I knew I needed a break.

“Mom, I’m going to take off for a while”, I tried to get her attention over the blaring TV.  “Do you want me to order your lunch before I leave?” I knew if I didn’t order for her, she either wouldn’t eat (and be really cranky by the time I returned) or one of the staff would have to order for her and help her with dinner.

Mom was, I assume, watching the television so closely because she was trying to read their lips as she didn’t seem to be hearing anything at that moment.  She didn’t even notice I had moved to beside her bed and turned the volume almost to zero; mom was still watching intently.  “What do you want for lunch”, I asked again; still nothing.

I clicked the TV off and mom finally looked at me just as a transporter showed up with
a wheelchair.  “Mary?” a very nice young man asked.  Of course, mom didn’t hear him and instead asked me if I would mind ordering her lunch and proceeded to give me her order.  “I will, but it looks like you’re going for a ride somewhere”, I tipped my head in the transporters direction and looked at him as if to ask “where are you taking her”.  Mom was a little startled when she noticed we weren’t alone.  A few minutes later mom was settled in the wheelchair and heading down the hall for a hearing evaluation. I didn't know who had ordered the evaluation, but the thought that went through my mind, was "it's about damn time!"

I had taken the opportunity to tell mom I would order her lunch and then was going to leave for a bit, her sandwich would be here when she got back.  “I’ll be back to order dinner” I said even though I was sure mom couldn’t hear me.  I held for ten minutes and then repeated the order twice; I still wasn’t sure they got it right.  Of all the things I had to be irritated about, I still don’t know why I was so darned irritated at that cafeteria worker as I walked to my car.

“How hard can it be?  Egg salad sandwich on white bread; a pickle wedge, not hamburger chips like last time; whole milk; a strawberry ensure.  How hard can that be?” I didn’t realize I was talking out loud, VERY loud, until I saw people standing by the car next to mine looking at me like I was crazy.  I blushed, quickly got in my car and smiled at them as I backed out of the parking space.  Maybe they would think I was just a very rude person with a blue tooth ordering take out.  I think I’d rather they thought I was crazy than rude.  I just didn’t like that I was feeling a little crazy.

I had so many thoughts jumbling through my head; I was having trouble sorting them.  I couldn’t seem to focus on any one thing long enough to accomplish anything.  When I got back to my hotel room, I decided making a list would help me prioritize what was most important; what had to be done before I could take mom home and be able to provide the care she needed.  Feeling like I was a little more in control, I was ready to tackle the first item on the list.  I figured I may as well tackle the one I dreaded the most first.

“Hi, my name is Brenda, I’m Mary’s daughter” I quickly told her that I was sorry that I had to change mom’s appointment again and I hoped the doctor would still take her as a patient.  I had been trying to change moms’ primary care doctor for months and had finally gotten this new doctor to agree to take mom as a patient, only to have to change the appointment – THREE times now!  I finally finished rambling and took a deep breath.  “No problem, I’m sorry your mom’s had so much trouble.  When would you like to reschedule?” the receptionist was so kind.  I was so surprised, that I literally took my phone away from my ear and looked at it.  Had I heard her right?  I realized I was still holding that deep breath and it took me a minute to recover, “Well, she’s scheduled to be released on September 10th, do you have anything within a few days after that?”  The nice young lady squeezed us in as late in the day on the 11th as possible, “The doctor will be out for a few days starting on the 12th and we don’t want your mom to have to wait any longer than necessary”.  Wow!  What a difference from her current doctors’ office.  At least I didn’t dread making that call as much now.

“Hi, this is Brenda, Mary’s daughter” I told the receptionist who I had probably talked to a hundred times over the previous couple years.  She crisply went through her rote series of questions to “verify” who I was before saying, “How can I help you”?  Deciding I didn’t need to go in to a lot of detail, I simply said “I need to cancel mom’s appointment”.  Now, these are people who have been seeing my mom in that office for many years, you would think they might ask “why”.  After all, the doctor had told me a year and a half ago that mom was “lucky to be alive” and another time that I should “just call hospice”, didn’t they even care if maybe I was cancelling because the doctor had been right and mom didn’t survive the surgeries that he seemed to be so against her having.  Nope.  She didn’t even ask if we wanted to reschedule.  The only response was “OK, got it”, before she hung up.  Although I was irritated with this call, I shrugged it off pretty quickly as I reminded myself that if the new doctor worked out as well as I hoped she would, we would never have to see the old doctor or his hateful, non caring staff again…….

would we?


Tanya said...

You remain in my thoughts and prayers

healthcare hostages said...

Thank you, Tanya. You are always in my thoughts and prayers also! :)

Alana said...

I started last year on that caregiving journey (thankfully, at this point, my mother in law is somewhat fairly independent) enough to have great respect for all those whose footsteps I am following in.

healthcare hostages said...

Alana, for me, caregiving was a lot like raising children, only harder!! I'm glad your mother in law is fairly independent and I pray the best for you both! If you find yourself in a position of needing a place to find support from MANY caregivers, let me know. I am involved in some great online support groups.