Friday, December 31, 2010


Well, that was certainly a full, amazing  bittersweet year! 

Nearly a full year has passed since I first introduced this blog.  I began by telling a little about myself and my situation as caregiver.  I proposed my mission and suggested what you might expect to find in upcoming posts.  You met my mother and father and their sisters and brothers.  I offered insights into family, friendships, caregiving, amusements, electronics, diversion and recipes.  I shared some laughs and some tears and some good old-fashioned common sense.

I created this blog as a writing exercise.  I had reached that proverbial "writer's block" on some projects I was working on and thought this would be a way to keep nimble and work through the block.  I also knew I had caregiving information that was worth sharing;  hard learned information from my years of real-life experience taking care of my bed-bound mother facing the ravages of Alzheimer's disease as well has having taken care of her sister who had succumbed to cancer a few years earlier.

I have been overwhelmed by the response I have gotten since my first post.  The readership has constantly grown with dedicated fans from around the world.  Letters I have received have touched my heart in ways I never expected.  There are so many of you who are in caregiving situations, each with a personal story to share. You have been so generous with your compliments and gratitude.  I am truly humbled.  I am also grateful for the feedback you give me.

I have received notes from long-lost friends and family as well as strangers and new friends.  I have been sent wonderful anecdotes from my mother's former students.  I have gotten thank you notes from other caregivers.  I have gotten requests for topics and especially requests for recipes.  My "Foodie Friday" blogs quickly became a huge success.  My "Mini Golf Monday" blog just as quickly drew hate mail!  Who could have known that people had such visceral feelings about mini golf?  I have even gotten a couple of date proposals!

I have postponed re-visiting some of my more popular posts because they were going to be too difficult to share until some time had passed.

Last February I introduced you to my father's last surviving brother, Uncle Eddie and his wife Lena in a blog titled "THE HOUSE THAT TIME FORGOT".  This was a very popular story and one that was especially dear to me.  It was an account of my visit with my aunt and uncle and reunion with my cousin and her husband.  What a great visit we had.  At the end of the blog I wrote:

"We left as we had arrived, in a flurry of hugs and kisses and tears.  There were more tears as we were leaving than arriving.  There is no doubt that we were all having the same thoughts and wondering how many more of these wonderful visits there will be.  We promised not to let another two years pass and certainly not to let another twenty in between visits with my cousin."

which turned out to be more insightful that I had hoped.  That wonderful visit turned out to be our last visit with Uncle Eddie.  This summer he left us to join his three siblings: Mike, Joe and Pat.  The last of a generation is now gone.  The sturdy brick house still stands but it is just a little more sad.  My aunt now lives there alone with her memories and ghosts.  

In "DIARY OF A MAD CAREGIVER" I introduced you to my mother's "Munchkin Sisters".  I was on a rant about coming home to find my kitchen covered in strawberry juice and the ease with which they were always able to deny culpability.   In "TRANSITIONS, DECISIONS AND BUREAUCRACY" I told of the struggle to get the elder sister into a nursing facility because of her declining ability to care for herself.

I was able to place Theresa into a facility where she immediately made herself at home.  In the tradition of the Clemente women, she is amazing.  Her attitude is great.  She adjusted to her new life immediately.  Her demeanor is positive and healthy.  In fact, on the approaching of her 93rd birthday this summer, my sister informed her that we were going to have a little party for her at the home.  In classic Theresa style, she said to Patricia: "you don't have to make a fuss.  We'll have a big party when I turn 100.  That's the important one"!  You can't help loving this tiny dynamo.  

The youngest sister, the one I referred to as "Baby Jane", has been failing quickly.  She has always been the problem relative and that's not getting any easier.  She can barely take care of herself and her home.  Her memory is failing.  She has always been difficult but now even more so.  Getting care for her is going to be the challenge for the new year.  Unlike the graceful sister Theresa, Baby Jane refuses help and/or change.  She refuses to admit her decline.  She, also, has no children but she has not taken the legal steps to give authority to anyone.  I don't know how this is going to play out but I know it's going to be a struggle.

My mother Adelaide continues to defy her doctors.  Just before Christmas we had another round with one of the "Scaregivers".  My sister and I had been hit hard with a cold that was going around.  Despite our hand-washing and face covering, eventually mom also got sick.  This cold was an especially strong strain even for those of us blessed with good health. 

It walloped dear Addie.  I spent a few nights at her side making sure she was comfortable and safely positioned to help her breathing.  I put her on oxygen to make her breathe more easily and made sure she was getting her nutrition and fluids.  One of her doctors came for a scheduled visit.  He walked into her room, heard her cough and saw her coloring and proclaimed to me and my sister that he "wouldn't be surprised if she didn't make it through the night".  He proceeded to declare that she had pneumonia and her coloring was a sure sign that she wasn't going to make it.  He called in a prescription for antibiotics and said to keep her on the oxygen and make her as comfortable as possible.  I did notice that he was hedging his proclamation by ordering 3 refills on the medication.  Even the hardiest of the naysayers knows the determination of Adelaide.

That was 12 days ago.  It was a difficult 12 days but Adelaide never gave up the fight.  Once again she persevered  and thrived.  She is happy and comfortable and has no plans to go anywhere yet.  She is bathed in love and blessed with an awesome  temperament.  Her smile and laughs are infectious.  Even in the throes of Alzheimer's she continues to be a role model.

As we age, holidays and the passing from one year into the new one  become more precious, more steeped in nostalgia.  I like to consider the holidays as being colored a little more blue than they used to be.  The future is less uncertain than it was.  

It is nearly 70 blog entries since I that first introduction. My "writer's block" is long broken.  My life is full and rewarding and  I am a grateful man. I am constantly learning, making new friends and bonding with dear old friends.  Thank you for reading my ramblings.  Please continue to share your thoughts with me. I will continue to share with you in the new year.  

To my fellow caregivers: be strong, take care of yourselves and look for the joy.

Wednesday, December 1, 2010


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.