The Year From Hell

Hello Friends,

We approach the end of 2012.  I, for one, will not miss it a bit.

While I wish '12 gone, the worry of what 2013 might bring is weighing in my mind.  Not that I like to be a worrywart --- on the contrary, my preference is to clear my mind completely of all negativity, worry being the uppermost negative emotion --- but it's a good bet that the issues we now deal with will not vanish immediately upon the stroke of midnight 12/31/12.

A good bit has happened since our last postcards. About a week after we were told that Mom was not responding to therapy, the Doctor notified Mom, Dad and me that this was due to the paralysis.  Not only is her lower body affected, but her diaphragm and a portion of her chest is paralyzed as well.  Mom didn't buy that diagnosis, and told the Doc that she believed in Miracles, and "take a hike" was part of her scoffing.

We decided that moving Mom to a nursing center in RI was the best course of action, as Kindred Hospital was, essentially, washing their hands of her further treatment.

She was moved last Friday. On Saturday morning, her new Respiratory therapist attempted to remove her from the respirator.  For 8 minutes, Mom breathed on her own...although with some distress. She was again vented, and Dad and I went home.

Late that afternoon, Mom had visitors. Her sister Catherine, nephew Stephen, S-I-L Lillian and nieces Beverly and Carol arrived.  The Therapist again disconnected Mom from the respirator, and rigged the trach so she could talk.  And talk she did!  Now, mind you, she hasn't spoken a word since the beginning of October, and neither her husband nor any of her children has heard her voice since that day they did the tracheostomy. (sp)

We heard about this when Stephen posted about it on Facebook that evening. It appears that Mom was unaware that she was breathing on her own, because her Sister had her full attention.  She was off the machine for two hours, chatting and happy. Aunt Catherine was ecstatic! She was expecting to see her Baby Sis on death's door, instead she was witnessing an amazing recovery!

Sunday... Dad, Steve, Larry and Ro, Mike and I visited. Again she was disconnected from the vent, and we heard her speak first hand. We laughed, we cried, we danced around the room! (Mom's roommate thinks we're bonkers.).

Paralysis?   Ha!   Take that, stupid Doctor at Kindred!

She remained off the respirator for three hours that day!

Christmas Eve...many visitors, including Donna and Tom, and my husband Jerry, witnessed the phenomenon for the first time. Conversation, laughter. She talked on the phone to our Brother Lenny. Another 3 hours without the respirator. Joy. Pure Joy.

Now, it has been a fact that, whenever I post good news about Mom and her condition, she immediately has a setback. So for a while, I wouldn't post anything, but that only caused the extended fam to get upset because they were not hearing positives except through the snail-like grapevine.  If I don't write something today, everyone is gonna have a canary for not letting them know about the "Christmas Miracle".  I log in to Facebook and tentatively report that, although we are not out of the woods yet, a glimmer of light shines in the distance.

Christmas Day.  Jerry and I go to visit, about noontime.  The woman who is always smiling is uncharacteristically cranky today. She didn't want to open her gift, she didn't want to talk.  We put it down to fatigue, and left her resting, comfortably.

Yesterday, Dad and I drove out there late morning. We found her complaining of pain in her left side. Her moaning was heartbreaking. Medication was ineffective. Transferring her from the bed to a chair only caused the pain to 'move' from her left side to her back.  She was totally miserable. There was nothing we or the nursing staff could do to make her feel better. I have never felt more helpless, useless.

It may be completely irrational, ...Yes, I know, I know...it's not possible that I am causing any of the nightmares she has endured, but it sure is a co-inky-dink that the crappy stuff follows my up-beat postings.

I am not going to visit today. Unless I hear from Donna, I am going to assume Mom is OK, and try not to think about how 2012 might never really end.

One Happy Wave in a Sea of Misery

Hello, Dear Friends,

I am sad to report that the situation with Mom and Dad is not improving.

But we had one happy day.

Albert and Josephine Martineau, November 24, 2012

Despite the fact that Mom is in a hospital in Massachusetts, we had our annual Family Reunion. It was held at the hospital, and we all took turns visiting Mom between plates of the usual Feast. She was feeling pretty good, happy that we hadn't cancelled the festivities, and excited to see all of her babies. We fixed her up pretty (don't you think?) brought her lots of gifts and flowers, and showered her with affection and praise.

It was, indeed, a good day.

Then we were quickly ushered back to reality. 

You may not know how this whole thing started. A simple infection. On June 8th, she cut her leg, tried to self-doctor, and failed. At the time, she was caregiver to our Dad, who was recovering from a C-Diff infection he contracted when HE was in the hospital (what seems like a thousand years ago). Since she was put on antibiotics for HER infection, her immune system was more susceptible to acquiring the C-Diff, which she did, and she became exponentially more ill than Dad.

And the rest is...horrible.

Five hospitals, two major surgeries (triple bypass, colectomy) several minor surgeries and many screw-ups later, she is now a paraplegic, cannot speak, and is connected to a respirator and a feeding tube. This is the woman who, on Easter Sunday, was running all over the yard helping the youngest Martineau's hunt eggs.

We were told on Wednesday that she is not responding well to her physical therapy, so it is being discontinued. In addition, she is not responding AT ALL to respiratory therapy due to a fluid build-up in her abdomen which causes pressure on her diaphragm, which in turn causes pressure on her lungs causing the inability to breathe on her own.  The suggestion of the hospital staff is an additional surgery to release some of the fluids, in the hope that it will help.  If it does not, (and they are not terribly confident that it will be anything more than temporary, anyway), she will be in hospital, on life support, for the duration of her lifetime. She is completely sane and lucid, so there is no way that discontinuing life support would ever happen.  The quality of her life, however, has been reduced to shit.  (Sorry.  It's the only word that fits, here.)

And in the meanwhile...


...we are still caring for Dad, at home, 24/7.   He is failing.  As you might remember, he suffers from heart disease, emphysema, COPD and circulatory problems. In addition, we have recently been told that the likelihood of lung cancer is high, and senility is becoming an issue.

Dad is 89, and never did take care of himself all that well, so his condition is not all that surprising. He still smokes two packs of cigs per day, and a glass of wine, for him, is 20oz.  He can put away several glasses before falling into a drunken stupor. We have stopped trying to limit these bad behaviors, on the advice of his Docs.  Really.  And they're right, of course...his days are numbered, so he may as well 'enjoy' them.

But we are not enjoying watching him slowly die.
While watching our Mom 'despondently live'.

More on Mom

I can"t believe that it has been nearly a month since I was here last, and you are so totally unaware of what's been happening.  For this I apologize.

Mom was moved to Kindred Hospital in Stoughton, Ma.about 3 weeks ago  This is a Long Term Acute Care Facility, and their main focus is to wean her off the respirator and get her well enough to be transferred to a "regular" Nursing Home. However, their efforts have been thwarted by a laundry list of events, some of which they could have averted, some that Mom herself created. I won't go into them right now, because it depresses me to lows I didn't know existed before 2012.

Suffice it to say she is less well now than she was when we first admitted her to the hospital on September 10.  It is my belief that hospitals are dedicated to keeping you at their mercy rather than assisting in your recovery. (Ya' think???)

Here is my latest Facebook Update. I have been posting there since the word gets out to more Family members that way (my family isn't crazy about my blog, and many of them avoid it at all costs.)


Mom Update:
Larry, John, Dad and I went to visit Mom yesterday (Nov 10), and she is doing just ok. There are a great many hurdles for her to overcome, and she is frustrated by the whole process. Physical and respiratory therapy has been hard for her...after all these weeks lying in a bed, her strength is tapped, so even the least exertion is like running a full marathon.
She is not able to speak at this point (and that part is driving her to distraction) due to the respirator, and although she has feeling in her lower extremities, there is no mobility. We are left hoping for a miracle as far as walking is concerned.
Our main focus right now is to keep her motivated, and to keep her spirits up, so she will stay cooperative therapy-wise.  The lovely cards and letters she has received from you all make a huge difference.  Keep her in your thoughts, please!
xoxoxo, me

If any of you are on FB, and want to friend me there, I will gladly accept your request. I believe there is a link somewhere around here...

xoxoxo, cd

Challenge Boulevard. ad nauseum

Thursday Oct 11.

When Jerry and I arrived at the hospital at 10:30 am, we found Mom in great distress.  She was is terrible pain, and the nurse told us she was being given morphine for it. All I can do at this point is cry and cry and cry.

Donna arrives,  John arrives.  Joe comes by during his lunch hour. By the time Lenny arrives, Mom is looking better.  she can't speak...the trach is affecting her voice box... but otherwise she is doing ok.

And we head back uphill...

Friday, Saturday, Sunday, little bits of improvement each day.

Is she out of the woods? The answer to that question is No. And we are not deluding ourselves that she ever will be.  It will be Acute Nursing Centers once she leaves the hospital.  She is not aware that most likely she will never return to her home and her beloved "Things". Just the thought of this is heartbreaking.

And we also know there will be more screaming before this ride is over.

Challenge Boulevard, holy cow...

On Friday morning, my day at Dad's, at 6 am, I decide to call the hospital to see how Mom is doing.

Start screaming...

During the night  Mom was having a difficult time trying to readjust herself in the bed, and when the nurse tried to assist, she noticed that Mom was unable to move her legs at all. The diagnosis: a lack of blood flow to the spinal column, which caused the spine to become inflamed, which caused paralysis of her lower extremities. A permanent condition.

Saturday, Oct 6...Keep screaming...

Her kidneys are failing...she will need dialysis.

Monday Oct 8... Keep screaming

She is unable to breathe on her own, so the desired course of action...a tracheostomy (sp)  Don't worry, this is a bedside procedure, we do hundreds of them!.

Wednesday Oct 10...Keep screaming...

During the tracheostomy, (which went well, by the way)  the doc notes that a probe which was inserted into her groin several days ago (to constantly monitor blood pressure) is looking pretty iffy, so while he is there anyway, he might as well remove the tube.

Keep screaming, and screaming, and screaming.

The probe is cut (instead of the suture holding the probe in) and a 3 inch piece of the probe is still inside her body.  It is plastic, so it won't show up on xray, and they are going to have to go BACK INTO SURGERY to hunt for and remove the piece of tubing in her vein.

more tomorrow. maybe.

Challenge Boulevard, continued again

So the next morning we return to the hospital to find Mom in the Surgical ICU, once again hooked up to every machine known to man, and IV tubes everywhere. Her breathing is so slight that they decide to leave the breathing tubes in for the duration. She is swollen to the point where she looks like the Michelin Man on steroids. She is pumped so full of pain and anxiety medications that she doesn't even acknowledge us in the room.

We are inconsolable.

But then the roller-coaster ride continues!!!

By noon, she is awake and aware.  They remove the breathing tube and she can talk a little despite her throat being sore.  She smiles at everyone, says she feels pretty good!  We are back at the top of the Hill!!!

But you know what happens once you get to the top???   Start screaming, because it's a long drop.

Challenge Boulevard, continued

Mom update:

And so...Dad and Donna and I make the long walk to Mom's room to present this new idea to her.  It doesn't take long for Dad to convince her to give it a shot.

The surgery involves removing her entire large intestine, because the infection has damaged it beyond all other repair.  This surgery is rarely reversible, so the likelihood of Mom sporting a colostomy bag for the rest of her life is high. She is aware of all the drawbacks, but agrees to have it done.  She is taken to emergency surgery  immediately. 7:30 pm.

Donna, Joe, John and I decide we will stay and wait for the surgery to be over. Larry takes Dad home...the poor man is exhausted after such a long and trying day. Since surgery is expected to take up to 4 hours, everyone else goes home...gotta sleep - work/school tomorrow.


(I have forgotten to mention that, since her return to the hospital and through all of this drama, her breathing is not good.  She is retaining so much fluid that she can't expand her lungs enough to get sufficient airflow. just another challenge).


The surgery takes a very brief 2.5 hours.  It goes well...she will not awaken until morning, so we might as well go home.  We do.

more tomorrow.