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Sunday, May 8, 2016

When the angels came......

Thank you for continuing to follow our journey. Since my mother's passing, it has become more important than ever that I continue. 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 always, I will attempt to be delicate and tasteful, but some of you may find some of the details to be a bit graphic.


For today, just a poem..........


When the angels came......


When the angels came and took you
I’m sure they had to know
The following day was mother’s day
And I would miss you so.





When the angels came and took you,
Did they feel a little shame?
They had to know how much I’d hurt;
That Mother’s Day would never be the same.





When the angels came and took you,
Did you ask if you could stay?
If I had been there with you,
Would they have allowed us one more day?




When the angels came and took you
They delivered you from pain
But did they know, for me at least,
Mother’s day will never be the same?




Poem By Brenda Case - May 8, 2016 in honor of my mother, Mary Adams 6/13/36-5/9/2015

Saturday, May 7, 2016

"Here's your sign"

Thank you for continuing to follow our journey. Since my mother's passing, it has become more important than ever that I continue. 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 always, I will attempt to be delicate and tasteful, but some of you may find some of the details to be a bit graphic.




September 4, 2013 started out just like every day for the previous 2 months.  With my eyes barely focusing after only a couple hours sleep, I stumbled out of bed and in to the shower.  I listened to the morning news as I dressed and got ready to head to the hospital.  Finally feeling human and ready to face the day, I headed out.





Maybe I hadn’t been ready to “face the day”.  I found myself experiencing a little road rage as I made my way through the end of the morning rush hour.  By the time I pulled in to the parking lot, I had lost count of how many people had irritated me during my 15 minute drive.  I was feeling like Kathy Bates in Fried Green Tomatoes as I circled the parking lot.  I was even fantasizing a little as I saw yet another car swung in to a space I was clearly waiting for – TOWANDA!



My mood didn’t improve a whole lot when I finally made it to the in-patient rehab unit and got the results on moms’ hearing test from the day before.  Seriously?!  Why even bother to do the test?  The
results showed mom to have “severe to profound hearing loss” that was “unlikely to be corrected with hearing aids”.  I could have told them that without any fancy equipment!  First, even if the aids might have been beneficial, there was no way mom would be able to put them in with her crippled hands and lack of mobility.  Besides, the thought of one more thing on my “to do” list was enough to make my blood pressure skyrocket.  I wanted to know what caused it and why it happened so quickly; their only purpose for testing was to make sure it wasn’t caused by her new medications.  Since they determined it was “unlikely” the medication caused it, there would be no further testing; we were welcome and encouraged to seek the opinion of an off-site audiologist once mom was released.


Of course, I was pretty sure I knew the real reason that “no further testing” would be done.  It all boiled down to Medicare guidelines.  Since they determined it was “unlikely” the medications had not caused the sudden loss of hearing, Medicare would not pay for any further testing until she was released.  I was still mumbling to myself about the ineffectiveness of the Medicare program as I walked in to moms’ room.  I was a little surprised that the TV volume was at a normal level; I was very surprised to hear my mother carrying on a phone conversation.  “Well, Brenda just got here, so I will let you go” mom ended her conversation and smiled brightly at me.


For the next ½ hour or so mom & I chatted and there was no sign of hearing loss at all.  Then, all of the sudden I noticed moms’ brow furrow as she started increasing the television volume.  There was something oddly familiar about the way she was tilting her head.  “Does it feel like you have water in your ear? I questioned mom; no answer.  Mom giggled as I stuck my face right in front of hers, “What are you doing?  I told her I was trying to get her attention and while we were face to face, so she could read my lips, I asked again, “Does it feel like you have water in your ears?”  Yes, she said that was exactly what it felt like.  Wouldn’t they have noticed fluid in her ears?  Could it be that simple?  I was making a note in my phone to make an appointment for mom with the ENT when we got back home, just as PT showed up for moms’ daily therapy.


I continued to be amazed at my mother’s strength as I watched her in PT; her resilience was pretty incredible.  I could tell she still was not hearing well, if at all, but mom worked through her exercises like a pro……..until they attempted the two stair practice.  Even with one leg fused straight with a rod from her thigh to just a few inches above her ankle, mom struggled up the first step and then time seemed to freeze.  “Good job, Mary”, the therapist exclaimed, just as mom started to sway.   “I’m really dizzy” mom said in a voice just above a whisper.


“I got you”, the therapist stepped closer to mom and was visibly supporting most her weight.  “I need some help over here”, the therapist shouted without taking her eyes off of mom.  Within seconds there were 4 therapists hovering and discussing what they needed to do.  After what seemed like forever, but was probably only a few seconds, the four of them had devised a plan.  They were easing mom in off the step and in to her wheelchair just as the nurse appeared with a blood pressure cuff & stethoscope.






“Weren’t you getting enough attention?” the nurse joked with mom while she took her vitals.  Surprisingly, mom, all the sudden, could hear again, “No, they were ignoring me”, mom joked back.  Even though mom insisted she was fine, the decision was made that she needed to rest instead of continuing her “routine”.






Once mom was safely in bed and we were alone, she looked at me with tears in her eyes and asked, “How are we going to do this at home?”  The truth of the matter was I had absolutely no idea how we were going to do this at home; I was scared.  Mom was looking expectantly at me while she waited for an answer; I honestly didn’t have one.  “We’ll figure it out mom”, I brushed her hair away and kissed her forehead.  “I’m going to go back to the hotel and do some laundry.  Do you want me to order your lunch before I go?” I was trying to change the subject to anything other than what I knew mom was thinking.



Mom wasn’t ready to change the subject; she needed reassuring.  We went through this every time she had any set back at all.  I sat patiently as mom clicked off all the pro’s and con’s of going home with me vs. finding a Skilled Nursing Facility for her to stay in.  As I listened to mom go through her lists, I vividly pictured her previous two stays in SNF’s.  “What do you want to do, mom?” I already knew her answer was the same as mine; she wanted to go home with me.


Wanting mom to go home with me didn’t nullify the fact that I was scared to death of the new
challenges we would face.  It also wasn’t lost on me that once we went home, I would have very little, if any, time to myself.  I desperately needed some “me” time; time to do anything I wanted or do nothing if I so chose.  I just wish I could have figured out how to balance the need for “me” time with the deep seeded need to make sure my mothers’ every need was met; her every whim catered to.  I had planned to leave hours before.  I had told mother goodbye at lunch time; she had finished dinner and was ready for bed before I finally prepared to leave.  I hated that everything seemed so out of control; I couldn’t plan for anything.


I also couldn't seem to tell my mother that I needed a break; a couple days without spending hours at the hospital.  It somehow seemed almost hypocritical of me when she had spent many more hours than I had.  "I won't be here very early tomorrow" was the best I could make myself do.  I gazed out the window as I gathered my jacket and keys.  The sky looked ominous; I hoped it wasn't a preview of what was yet to come.  That thought had no sooner crossed my mind when a huge clap of thunder struck.  "Here's your sign" I thought to myself as the next bolt of lightening lit up the sky.


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?