CAREGIVER V. SCAREGIVERS

A hospital is no place to be sick

samuel goldwyn

There are frightening  times for caregivers when quick, and potentially, life or death decisions must be made.  One of our major goals is to keep our loved ones at home where they can be comfortable, happy and relatively safe.  There are times when that is not possible and knowing when to call 911 is an acquired skill but if you are scared or unsure, it is better to be over cautious then wait until it is too late.

Not too long ago my mother had been showing some signs that she was getting another one of her frequent bouts of urinary tract infection.  Over the years I have become an expert diagnostician from sheer practice and vigilant observation.  I consulted with her doctor and we agreed to start her on her normal course of antibiotics and increased liquid intake. 

The next day when I was performing our usual morning rituals I noticed an alarming rash beneath a covered section of her body.  My mother was also lethargic and refusing food.  This is always a bad sign with her.  She has a great appetite normally.  In the past, when these signs surface I know we're in for a tougher battle.  I got some liquids into her and left her to rest for a little while.

When I returned to check on Adelaide, about 20 minutes later, she was having difficulty breathing.  This is far from normal for her.  I elevated her head, ran for the phone and called 911.  I know the signs and these were all bad.  She was going to need intravenous fluids and higher doses of antibiotics for the infection and I was scared by her breathing.

The paramedics were at my door in minutes.  They're wonderfully quick to respond and good at what they do.  They sprayed something in her mouth and put her on oxygen and whisked her to the hospital.   The trip to the hospital is always scary because I fear the worst and don't know what to expect when she arrives.  I was there waiting and now my sister had also arrived.

She was stabilized in the ER.  Her breathing was back to normal and she was immediately put on an IV of fluids in case of dehydration.  Dehydration often accompanies the urinary tract infections [UTI].  Now the tests begin.  

As always, I suggest to the doctors that she has a UTI.  As always, the doctors perform every test known to mankind before testing her urine.  I know I'm not a doctor but I know my mother and this was probably her 10th trip to the ER for the same thing in 10 years.  Up to this point I have been right 9 out of the 10 hospital visits.

As you may recall from previous blogs, my mother has a wound [bed sore] which we have been treating for quite a while with weekly doctor visits, nursing and my constant tending.  Suddenly this has become the focus of the entire ER staff.  All the "red lights" went off.  My mother was placed in isolation.  Wound specialist is called in.  Infectious disease specialist is called in.  We're all forced to  wear protective gear as they are sure my mother's infection is more than just another UTI. [of course the urine tests have not come back from the lab yet]

The wound doctor calls me in.  "You take care of the wound?" he asks.  "Yes" I answer along with the details about her doctor and nurse visits.  "I know how difficult it is to take care of these wounds" he proffers before congratulating me on the condition and health of the wounds.  "I looked you mother over from head to toe and her skin is in amazing shape for a woman in her condition" he adds. He didn't see any signs of infection from the wound!

Whew!  I was much relieved.  That's really great news but I wasn't surprised because the wound looked perfectly fine to me earlier that morning and there was no tell-tale sign of odor or pus.

Now it was the infectious disease doctor's turn to examine my mother.  I don't hear anything from her but the nurses tell me that my mother's blood tests have returned with an elevated white blood cell count which means she does indeed have an infection in her system.  I'm assuming that means it is indeed another UTI.  She is finally sent upstairs to a hospital room.  

When we go to her room, in critical care, we are met by lovely nurses who tell us she is in isolation and we still have to follow procedures and wear gowns and gloves.  This seems much for a UTI.

By the next morning my mother, the champ, is doing better.  She's alert and certainly looks better.  I'm told her white blood cell count is dropping nicely.  I'm starting to relax .....a little.

That afternoon I got a call from the infectious disease "specialist" while I was at home resting.  "This is very serious" she tells me.  "The infection is coming from the wound and has gone to her bone and when that happens there is nothing that can be done for a woman of her age."  I'm stunned.  "But the wound care specialist said the wound was fine" I offered.  "Infection can hide behind what you can see.  Normally we would begin a long course of intensive IV drugs but your mother isn't a candidate for that invasive treatment.  ...and we can't just send her home with oral meds because she can't swallow".  "She can't swallow?"  That's a new one on me.  "We'll keep her here for a few days on the IV and then send her to a nursing home [to die]".  

Now I'm devastated and confused.  I call my sister.  We cry.  We rush to the hospital knowing no matter what, she's not going into a nursing home.  Not now.  Not after all the years I've had her at home.  I'll take her back home, bring Hospice in and we'll cope.

The temptation to form premature theories upon insufficient data is the bane of our profession.

sir arthur conan doyle

We arrive at the nursing station outside my mother's door and glance into my mother's room where she is sitting up and looking pretty good.  The nurse looks up and asks us what's wrong so I tell her about the call from the wound "specialist".  "We just gave your mother the swallow test and she did fine.  She ate a cup of applesauce".  Now I'm confused even more.  Then she says "she said the infection was from the wound and it was to the bone?  We haven't even swabbed for a culture yet".  Now I'm angry.  "What the hell [I may have said something more colorful] is going on around here?"    

We go into my mom's room and I call the nurse so that I can take a look at the wound to see if there has been any change.  The nurse is great and obliges.  "DR. Lanni" is now on call.  The wound looks great.  They have been taking wonderful care of her.  We ask for some baby food.  They bring it and my mother ate it all!

Later I went out and got her a McDonald's vanilla shake.  Kill or cure.  I mixed in some Ensure powder and she ate at least a cup of the mixture.  Again, I'm feeling better.

Our strength is often composed of the weakness that we're damned if we are going to show

mignon mclaughlin 

The next day is a milestone.  A wonderful occasion.  It is Adelaide's 90th birthday!  There are better places to spend a birthday but my feeling is that any place you can celebrate being 90 is a good one!  We bring ice cream.  Family gathers.  A dear friend shows up with a beautiful orchid.  Mom is doing well.  Her numbers are normal.  She's off her IV.  She's eating.  We have been at the precipice and backed away once more.

The following day we arrive at the hospital to find that my mother has been moved out of critical care to a normal wing.  My sister is delighted.  I'm cautious.  We find my mother and introduce ourselves to the nursing staff at this station, which is around the corner and down the hall from her room, and they seem fine.  There is an aide feeding my mother and he is kind and gentle with her so that's a relief.

Now the staff doctor has appeared on scene and summons me to the nursing station while sporting a dour look on his face.  He begins to reiterate what the infectious "specialist" had told me a few days before.  My suspicions were founded and they had indeed moved her to this room to die.  Once again he suggests transfer to a nursing home and kissing her goodbye.  

"What about her wound culture?" I ask, grasping at hope.  "It came back negative but.." he explained.  "Infections hide.  We could have tested a spot that was clean".  "What about her white blood cell count?" I challenged.  "It was 25000 when she arrived in the ER."  "And now?" I asked.  "7000".  "What is 'normal'?" I wanted to know.  I was told that was within the "normal" range.  "What about the urine culture, what did that show?"  He told me that had shown positive for "unspecified" infection.  

Now let's recap:  the wound culture was negative. The urine culture was positive. The white cell count is normal.  She's eating and drinking.  She's not on oxygen.  All indicators are good so that means she's going to die?  Am I hearing this wrong or am I once again faced with a doctor who looks at the checklist, puts them all together, factors in her age and her Alzheimer's and offers an opinion without factoring in the individual patient?

I go home and call a physician friend of mine for advice.  I tell him all of her indicators and condition and test results at which point he stops me and tells me to get her home immediately before she does actually catch some hospital infection!  Now I'm feeling better.  I speak with my mother's weekly wound care doctor who also tells me to bring her home.

I listened to my instincts and the professionals who actually know her and brought Adelaide back home to her comfy bed, familiar surroundings, dog and people who love her.  She brightened up as soon as she was placed in her bed.  She was on antibiotics for another 10 days [orally, of course].

That was in August.  She returned home to us August 10 which was 2 days after her grand 90th birthday celebration.  She has been fine and happy.  She continues to thrive, amaze and confound doctors.

I am fully aware that one day she will not return from that precipice.  I try to be as prepared as one can possibly be.  Each time we are faced with one of these situations I kiss Adelaide on the forehead and tell her over and over again:  "I know you're scared.  I'm here with you.  I am going to make sure you have all the help you need if you want to hang on but I completely understand, with all of my heart, if you're tired of fighting and want to let go.  It is your choice."  I'm delighted that once again Adelaide chose life.

FIRST: TAKE A DEEP BREATH

After so many years as a caregiver there is nothing new about a crisis occurring, however each one is a unique event.  The challenge is finding the inner strength to be able to remain logical.  Panic is the natural first response and that is human.  The difficult part is pulling back from the panic in order to assess the situation. That is a tall order.  When you find a loved one in a compromised situation emotions fight hard to win the battle over common sense.

This week has been a difficult one.  My mother is having a medical crisis. I am sleep-deprived.  Even when my mother is resting comfortably it is difficult for me to sleep because I am regularly checking in on her to take her temperature, adjust her position or just to satisfy myself that she is breathing normally.

"It is truly said: It does not take much strength to do things, but it requires great strength to decide what to do." 

chow ching

At any given time there is a whole list of symptoms and manifestations which are part of my mother's health repertoire.  Some are more serious than others but all need to be monitored.  Even on the best of days when my mother is in good health, she is still an 89 year old patient in late stage Alzheimer's so no symptoms are taken lightly.  In the past several days the "perfect storm" developed.  At first I noticed the mildest of symptoms had arrived.  When my mother is not feeling well she holds her contracted leg very tightly to her body.  I did some physical therapy in an attempt to loosen the stiffness for her.

The next symptom to arrive was lethargy.  Normally Adelaide is awake and alert most of the day.  She smiles when she sees people.  She eats and drinks robustly.  She never cries out or whines.  Now she presents as exhausted.  She eats and drinks but struggles to stay awake long enough to finish.  Smiles are scarce.

I know something is "brewing" so I am vigilant.  I keep close track of fluid intake and bodily functions.  

I have a remarkable dog.  He's a loving golden retriever named Mickey.  He's quite old now but completely devoted to Adelaide.  He is very in tune to her health.  In the past he has woken me up to alert me that my mother was having a seizure in time for me to get 911 to the rescue.  An event that I might well have slept through until it was too late.  My friends and I affectionately call the pooch "Nurse Mickey".  

Nurse Mickey was on full duty this week.  He remained at my mother's side 24 hours a day except for the necessary visits to the food bowl and brief trips outside.  Normally Mickey sleeps with me but not when he senses a problem with Adelaide.  I am convinced that he can smell infection in her system.  He's never been wrong and I have full faith in him.

Next symptom to arrive was fever.  My mother woke me up by moaning and when I checked in on her she was HOT.  When my mother has a fever it puts me on edge.  I don't like to see her so red and uncomfortable.  It worries me.  I get the cold compresses and begin giving her Tylenol but these things take time.  

Stiffness, lethargy, fever and Nurse Mickey's concern: I know this is a urinary tract infection.  Luckily we have antibiotics on hand because she is prone to infections.  In the past, when we had a less cooperative doctor, these symptoms would land us in the hospital emergency room for hours of tests followed by a diagnosis of urinary tract infection.  

Visits to the ER will be another entire blog at some point.

I started the drug regimen in hopes that she will respond quickly.  Meanwhile the other sure sign of urinary tract infect has presented itself and my mother is holding her urine for stretches of up to 14 hours.  "Come on drugs, work your magic."  I push fluids on her.  

"When someone tells me there is only one way to do things, it always lights a fire under my butt. My instant reaction is, I'm going to prove you wrong!" 

picabo street

What followed next was no one's fault except bad timing and my temporarily giving in to fear.  Adelaide's wound care doctor came for his weekly visit.  He hasn't experienced my mother in crisis before.  She was throwing a fever and lethargic and he was, of course, concerned.  I'm glad that he shows concern for my mother's well-being.  Over the years there have been health providers who lacked concern.  

I explained that she had been ill for a couple of days and that she was on her antibiotic.  He was worried that her infection might be more serious.  He checked her wound and deemed that to be OK so we didn't think the infection was from that.  He did however say that he thought her overall condition might be in decline and that I should keep a close eye on her because she might need to go to the ER.  We decided to switch her medication to a different antibiotic because he didn't think the current one was working.  This is common for us.  Non-specific infections react differently to different medications.  Antibiotics target different bacteria.  

The wound care doctor left.  Contrary to all of my instincts and magnified by lack of sleep, I worked up a small panic.  I am completely aware of the fact that eventually everyone dies.  I am not in denial but I am also a fighter.  Adelaide is a fighter.  

After a few minutes I regained my composure and re-assessed the situation.  I switched the medication as suggested.  I put in a call to our friend in the doctor's office to alert them of the situation.  I was assured that I was following the right course and that we would try hard to keep my mother out of the ER.  I would keep monitoring the situation and the physician's assistant would come for a visit.

We had a quiet evening followed by a quiet night.  There have been no more fevers so far.  This morning finds my mother alert and far more comfortable.  We're not through with this crisis yet but the signs are cautiously hopeful.  Perhaps we can both rest up before the next crisis.