The “C” Word – 1 Year plus 124 days Disastrous, Dastardly December

This could easily go down in the record books as one of the worst months ever!  Just when you think things are falling into place, something upsets the dominoes and they fall haphazardly all over the place.

We started out the month having a surgery date in place for February 5, 2016.  Then, of course, there was the terrible fall that fractured George’s neck vertebrae.  He spent nearly a week in the hospital learning how to move about with his brace and get his medications under control via oral medications in order that he be able to come home. 

Within an hour of arriving home his new chair arrived and he has, just as I figured, spent at least 80% of his time there.  The first few nights he slept 11 hours without moving a muscle.  He was still on some pretty high dosages of medication so he was, for the most part, comfortable.  As comfortable as one can be in this awkward brace.  But it does require a lot of work on my part – between adjusting blankets behind him, helping adjust the brace, getting things for him in the way of food, drink and sometimes just picking up things that he has dropped.  There are some days I hardly had a chance to just sit and relax because every time I did something happened and I had to get up and “do” something. 

I had arranged for several friends to come spend the day with George so that I could go to work.  Lan was insistent that he not be home alone during the first few weeks.  The medications can cause some instability and the last thing we need is for George to take a tumble and finish the job. In our case we were very lucky that he did not sever his spinal column… he came close, within 2mm so it would not take much more to effectively cause much more damage. 

George did not like the fact that I arranged for “sitters”, but the people that were able to come over were able to have some great conversation with him so that the hours would go by as quickly as possible.  One of the side effects of the medications is that they made him very loopy AND very talkative.  My goodness, I don’t think I ever heard him talk so much.  In fact, it got to a point that I told him that I would probably start leaving the room when he told the story of what happened to him and the treatment, etc. because not only had I heard the story many times already, but there was never a “short” version of the story.  It would take him 30-45 minutes to get through and whoever was the recipient of his tale did not have opportunity to inject a word in edgewise until he was done.  He did not believe me when I told him that - - but it was true - - and, as I have to remind him from time to time - - I  am not the one on any medications so my facts will be closer to truth than his. 

By the first weekend home we were starting to, more or less, settle in a little bit.  I did manage to get a little more cooking in for the holidays and such – but only because I had stocked the house before or during George’s hospital stay.  We were looking forward to having the family here for Christmas day.  All was going fairly well.  I started to wean George off the heavy duty medications ever so slowly so the after-effects would not be hard to take. And then, things started to go downhill once again.

On Christmas Eve morning George awoke with terrible ear pain.  He asked to have hydrogen peroxide drops in his ears.  This was a great feat because he cannot bend his neck or lean over very far in the brace to do this – but we managed.  He said his ear felt better after doing so and we went about our day of final preparations.  The kids all arrived on Christmas Eve and we sat around and chatted and laughed.  By the time we wound down it was midnight and I headed upstairs to go to sleep.  I turned on the baby monitor (for Mom) and heard her voice.  It is not unusual for her to sometimes talk in her sleep – but as I listened I heard her say, “Please help me.  Somebody please help me.”  So I ran down the stairs to her bedroom thinking that she had fallen or something (even though I had not heard a fall).  She was lying in bed and stating that she had to go to the bathroom.  I told her to get up and go but she wouldn’t budge.  I finally tried to help her get up but she couldn’t/wouldn’t bend at the waist or at the knees and I couldn’t lift her on my own.  I laid her back down in her bed and told her that if she went in her pants that would be okay because she had depends on.  After five or ten minutes I went back upstairs to bed – of course, now I am wide awake.  Forty-five minutes later I heard the same call for help and went back downstairs.  Again, she could/would not get up.  Again, I explained that she could lay and go in her pants if necessary because she and her bedding were all protected.  Rather than go upstairs I decided to sleep on my new recliner so I wouldn’t have to go so far if she needed help.  Forty-five minutes later another cry for help.  I then took my pillow and blanket into her bedroom and curled up next to her to see if I could get her to settle down.  That did not work.  So I made an effort to get her to her bathroom.  This time, while I could get her to stand up, she required full body support.  I wrapped my arms around her and I walked backwards to get her to her bathroom.  After getting her on her toilet and changing out her panties I stood her up and did the same walking routine – but decided to let her sleep in her recliner rather than go all the way back to the bedroom.  Got her tucked in – and walked out to go back to bed to find the twins standing in the hallway near Mom’s bedroom.  I asked, “What are you guys doing awake?”  Their response, “We’re cold…”  Yeah, right.  I took them back upstairs where they’d been sleeping in my bed and we all went to sleep (mind you, it is now 3AM).  At 5 AM they were wide awake!  I turned on the TV for them so I might get a little bit more sleep.  Very little… I told them that we could not go down until 7AM.  They waited patiently, for the most part. 

Christmas day was a lot of fun.  Between stockings, and breakfast and gift exchange, we all had a great time.  I left Mom to sleep all morning since she’d been up most of the night.  That gave us an opportunity to just relax and have a good time.  Most of the kids were gone by noon so we had a relatively quiet afternoon.  The twins thoroughly had fun playing with their new American Girl dolls that Santa brought. 

By Christmas night, however, George’s ears were bothering him more and more.  He was in excruciating pain.  Good thing we had strong meds on hand so I just ramped them back up to where they’d been after getting out of the hospital.  They only partially worked however.  So Christmas night I was up on and off all night every hour and a half doing something for him.  Night two of very little sleep.

Took George to urgent care on Saturday morning and yes, he had a double ear infection.  Woo hoo.  More medications.  Since it would be a few days before those did their thing, we stayed on some of the heavy duty drugs for just a little while.  On Sunday we had a pretty quiet day.  Mom was doing okay.  George was on the mend.  Yippee.  Things are turning around…. NOT…

On Monday night Mom was coughing a lot all night to the point that she was weak the next morning.  Rosemary took her to the doctor and… once again, she has pneumonia.  This morning she was pretty weak because she had still been coughing up a lot during the night.  While she did go to SarahCare she was pretty tired and required an extra hand to get out to the car.  This evening she was falling asleep early so the caregiver put her to bed a little early.  Right now she is not coughing too much – but he was so very tired.  Hopefully the meds are doing their thing and she will get a lot of rest right now.

On top of all that, we had the first follow up for George’s neck on Tuesday morning.  He had hoped they would say they saw some healing going on but that was not the case.  In fact, Lan said that she did not expect to see healing.  She mainly wanted to see that the bones were not shifting which means that the neck is currently stable with the brace in place.  She does not expect to see anything happen for at least a few more weeks and will have us see the neurosurgeon at the end of January.  She feels that the healing will require a full three months at the very least.  This was all discouraging news for George and by the end of the day he was feeling quite useless and depressed about the turn of events. 

The twins have been with us for the week and tonight is their last night with us.  We have had a lot of fun with them.  I taught them how to play Yahtzee, we did a couple of ice cream runs, they played very well together this week for the most part.  They have been very sweet with George, even playing “nurse” to observe him shaving and help where they could. 

Tomorrow is Christmas Eve, a time when most make resolutions for the new year.  For me, I just pray for strength to keep it “all together”.  For, as frustrating and discouraging as it is for George, everything that happens to him AND his mom affects me as well.  Having the two weeks off for the holidays has not been especially relaxing for me as I have had to cope with ear infections, neck pains and brace issues, pneumonia, etc.  I pray that all the medication start doing their thing so that I can perhaps relax for at least part of the weekend! 

I already know some of what will take place in 2016 and it will be a very busy year.  For work I have to transition to a new database that was installed over the holiday week – to train the staff in how to use it and also figure out how to build out reports and such.  There will be more incorporations to it in order to have not only a client database but a donor and volunteer one as well.  A grant for 2016 will allow us to do more for our older clients but there is a lot of work involved and some extra training that we will be able to do (including learning Spanish) – so I have more hours incorporated into my work weeks for eight months.

On a personal note we will have to deal with whatever comes our way in regards to George’s neck issue.  Will the neck heal and fuse on its’ own or will there need to be an 8 hour surgery.  Whatever treatment works, we know that once we have that stabilized and healed we will be re-scheduling the cancer surgery.  That means another 7-8 hour surgery PLUS the recovery time afterwards.  2016 will be, for George, a year of healing/recovery and surgery/recovery.  For me it means my caregiving role just got extended and will last most of the year.  As long as George has a brace on he can do no driving which means I get to handle any of the errands, doctor appointments, etc. on top of working.  With Mom’s health being declined recently (oh, I forgot to mention that not only does she have pneumonia but she also managed to fall three times this past week prior to the pneumonia!), there is a constant need to monitor and assist the caregivers to keep up with the changes. 

As we keep saying, God never gives us more than we can handle - - we just wish he would slow down a bit on the demands!  This is exhausting – frustrating – sometimes discouraging work, and the work is never done.  While George is frustrated that God has not yet revealed to him what he should be doing with his life, the only thing I can concentrate on is getting through the hours and days at hand.  The future will reveal itself in time, I only have time and energy to expend on what is needed in this very moment and the ones immediately following. 

So, my main wish for 2016 is to just get through it!  I see a lot of adapting and caregiving in the year. Lots of changes to take place even many I do not know about yet.  I think, once it is all said and done, that we will be able to get our lives back. It is just going to take some time to get there.

While December has been disastrous and dastardly, I can only hope that January will bring some joy.  … not as much for me but for George.  I pray that his neck heals n less time than expected, I pray that the second surgery is approved and that it rids George of all visible and invisible cancer cells.  I pray that I have the strength to get through whatever happens to George and his mom over the course of the year and that I have the wisdom to not repeat some of the same mistakes I made the first time around.