Behind Every Family Caregiver There Is A Story….This is Mine.

In the middle of the night the phone rang.  Startled, I quickly picked up before another ring echoed in the silence.  It was my Mother on the other end of the phone who recently moved in to a rental house across the street from us.  She said “I don’t feel well can you……”.   I hung up the phone before she could finish her sentence and I ran across the street to her house.  I found my Mother doubled over in pain.  Even though I knew the answer, I still asked the question, “Does your stomach hurt?”  After asking it I felt silly – OF COURSE IT HURTS!  I asked her if she knew what was causing the pain and she replied “No”.   I decided to call 911 – that’s what I’ve been taught for years – “If you have an emergency you call 911.”   I’ve never had to use it before.  But I knew that was what I was supposed to do.  I dialed…the 911 Operator quickly answered – “911 what’s your emergency?”  She was very calm…something I needed at that moment.  I decided to take a deep breath and be calm myself.  ”Hello, my Mother isn’t feeling well can someone come and help us – our address is – her name is – her age is – her stomach hurts – ……”  The Operator asked me a question, and I couldn’t answer it -no big deal, right?  Then she asked another question – I couldn’t answer it.  Then a third – and the pattern is starting to sink in what’s she’s asking me.  Medical background, prescription information, find them and gather them, current medical conditions, allergies, dentures, height, weight…  My answers were the same, “I…I don’t know…”  Listening to the Operator and watching my Mother in pain – I quickly realized that I was in “panic mode”.

The paramedics arrived.  They asked many of the same questions the 911 Operator did.  I already knew I didn’t know the answers – but when he asked me my Mother’s date of birth – I rattled off the answer.  I thought to myself  ”Okay, you’re calming down…”  He gently touched me on my arm and said “Honey, that’s not your Mother’s birth date.”  I looked at him confused and he repeated what I said.  I realized that I gave him my date of birth.  I couldn’t even remember her birthday!  The paramedic told me to follow them to the hospital.  My feelings of helplessness must have been written all over my face because he said “Don’t beat yourself up, 99% of the people we see no-one knows their medical information.”   I thought  ”Was that supposed to make me feel better?”

During my drive to the hospital I was talking to myself: “Mom when you get out of the hospital we’re going to have a long talk about your health information!”  ”How bad can this be?  She has an upset stomach…..not bad, right?”  When I arrived at the hospital I grabbed a pad of paper on the passenger seat and I found my way from the parking lot to the ER Entrance.  Of course the ambulance went in a different entrance.  When I walked in someone was waiting for me.  I thought to myself “WOW!  What incredible service!”   Unbeknownst to me that person was a nurse asking me the same questions the 911 Operator asked me and the paramedics asked me.  I started to get frustrated.  I looked at her and said “Look, I know where my Mom likes to have lunch, and I know where she likes to go shopping.  I don’t know the answers to these questions.”  While she was handing me a clipboard and a pen she replied, “Most people don’t.”  I look at the clipboard and it’s several pages of forms – and I couldn’t fill out 98% of it.  I handed it back to her.  My lack of information was getting frustrating for me and for the medical professionals.

My Mother’s name was called and I thought “Oh good, I’m going to get to see her.”  They hurriedly brought me back and the doctor came out and introduced himself.  I remember thinking “Everyone here is so nice!  The must take a class or something.  He’s very tall.”   The doctor begins speaking before  my thoughts leave my mind and I see his mouth moving but I’m not hearing anything.  Or at least I can’t believe what he’s telling me.  ”You must call your family and get them down here…..Your Mother is probably not going to make it…her colon has ruptured and she is septic from head to toe…..she is on her way to emergency surgery……you have one hope the doctor that is on call….you got lucky, he’s the best…..he’s on his way in…..wait here…..”

I stood there..my eyes blinking rapidly…my head shaking “no”…..my mouth was open wanting to speak but nothing would come out…until I said “I have no family here…they all live in other states……She had a stomach ache…earlier she was playing with my kids…..she made dinner….we played cards…..we went shopping….this isn’t happening…..WHAT?  Are you sure?”  By this time the on call doctor came in.  Again, very polite person.  He personally walked me to a room far away from everyone else and he told me “Make yourself comfortable..it’s going to be a long wait.  Wait here…after the surgery I will come back and get you.”  I called my husband and my siblings.  Each time I repeated the story it became more and more real and started to sink in what was really happening.  And with that I started to feel more and more guilty that I didn’t know her medical or prescription information.  I am her emergency contact person!  I’m supposed to know that information.  I kept repeating that in my head.  It didn’t help.  ”Guilt” is a natural progression that we put on ourselves with hopes of making sense of our failures.  Or at least that’s how I felt.

When I woke, my wonderful Mother-In-Law was sitting in this small room with me.  I was grateful for her company.  A few hours later the doctor came in and informed us that my Mother survived the surgery.  They were moving her to the ICU…she was on life support…the next 72 hours were critical.   He told us to go to the 3rd floor and wait until he comes in to get me so I could see her.   A couple hours later I was escorted to her room.  The tubes, machines, beeping sounds, wires, were overwhelming to look at, but I ignored them and slowly proceeded to her bedside.  She didn’t look like my Mother.  Her hair was wet and slicked back – my Mother always had her hair done.  I remember thinking “Is this really her?  Check her wristband to make sure….”  It was her.  Her eyes were huge.  They said it was the medication.   There was a nurse standing on the opposite side of the bed.  The doctor came in and started speaking.  I asked him to “Please wait – I need to write this down.”  I didn’t stop writing until he stopped talking.  He told me he would be back and he quickly left the room.  The nurse was still next to my Mom on the other side of the bed.  She had a small smile on her face as she looked at me.  I told her how nice everyone is.  I told her “But that kindness was never more important than it is right now.  I need you to tell me what all that meant.”  She provided me with correct spellings, pronunciations, easy to understand terms, website information, etc.  She said “Don’t worry.  Your Mom is going to be fine.”  I looked at her with tears in my eyes and I said “How do you know that?”  She said “Because she has urine in her catheter bag.”  I said “So?  So what?  She’s peeing.”  She said “If her kidneys are working – she’s going to be just fine.”  I found it to be an odd statement, but a comforting one.

My Mother’s survival improved every day.  Over the course of the next several weeks all I did was take notes and come home and go on the internet and understand what was being said.   By the time she was discharged it was clear that she couldn’t live alone and unfortunately she was bedridden.  Overnight I became a “Caregiver”?   How did that happen?  Wait – did that mean I had to accept that my carefully manicured nails, sophistication and stylish business suits were a thing of the past?  That all the years that I had invested in my career has been instantly derailed?  What about my dreams?  Were regular decisions no longer going to be routine?  Would there be no more sleeping in on the weekends?  Or weekend get aways with my husband?  No more spontaneous vacations?  Was my time no longer my own?   Did I want to do this?  Could I do this?  I fainted at the sight of blood!  What was my husband going to say?  The stress and the fear were rapidly building.

Before my Mother’s discharge I was a regular at the hospital.  I felt like I worked there.  I was being trained for medical care that I initially couldn’t even pronounce.  My Mother had an 8″ opening in her belly that was 3″ deep.  I said “I think you forgot to do something doc!”  He chuckled and said “No I didn’t.  That wound needs to heal from the inside out.  You will be trained on how to care for it on a machine called a WoundVac.  You will need to change the dressing frequently and repack it.”  ”Ohhhhh no!  No, no, no, no.  I can’t do that.  No way”, I said in a loud voice.  He continued with “She will also be coming home with a pick line and you will have to give her two IV infusions with antibiotics everyday.  She is also on a TPN – you will administer that during the night checking her readings every 4 hours, you will give her an injection if her blood sugar is over…….”  I continued to say “No I can’t” during his instructions.  I didn’t even know what any of this meant.  I remember him coming up to me and grabbing my shoulders and saying “Yes you can!  You have to!”  I had a great respect for this doctor who saved my Mother’s life.  But at this moment I thought he was crazy for thinking I could care for a wound that deep and long and her belly just hanging out!  But if he believed in me, I had believe in myself.  I was given a crash course on learning the WoundVac; how to care for the pick line; how to give the IV antibiotics; how to mix the medicine for the TPN; how to test her sugar; how to give injections; how to use a stethoscope; a pulse oxymeter;  colostomy care; catheter care; etc.  To this day I don’t know how I did what I did.  I just kept telling myself “She has the hard part…she has to get well.”

Early on I figured out that caring for my Mother was easy in comparison to managing and maintaining her 32 prescriptions a day, 14 doctors, follow up appointments, home health visits, surgeries, allergies, health information, etc.   By this time my Mother and I had that long talk that I told myself on the way to the hospital we were going to have.  I had so much information to organize.  I never wanted to feel the same way I did that day when I couldn’t answer any of her medical information.

I was happy if I had time to take a hot shower.  I was living on sleepless nights, bad diet, and sheer worry.  I was running myself ragged.  I wanted to throw my arms up and wave the white flag.  In truth, this wasn’t what I signed up for.  How was I going to do this?  I’m not a “caregiver”.  I’m a business woman.  I have a career.   I kept hearing the medical people who came to the house tell me how lucky my Mom is to have me; that many people don’t have children that would care for them; that I’m a wonderful caregiver.  ”There’s that word again – CAREGIVER!”  I wanted to scream “I AM NOT A CAREGIVER!  I AM A BUSINESS WOMAN!!!”  I had emotional wounds so raw they felt like I would forever be vulnerable with second guessing myself about everything.  I was exhausted.

With every moan or gurgle I’d hear over the baby monitor placed next to my ear I would spring out of bed and to her room to check on her, do all the things I was supposed to do, chart it, clean her up and then go back to bed for maybe another 2 hours.  After the first few weeks I decided to take my role as my Mother’s caregiver very seriously and to take control of what was going on.  I was determined to make her better.  When the nurses started to come over I would say “Teach me – don’t do for me – teach me.”  Very soon I was taking over.  Gaining confidence allowed me to take the next step which was organizing all this medical information.  Sitting in front of my computer coming up with something and then editing it a thousand times – finally I had what I wanted!  A perfect document that listed all her medical and prescription information as far back as she could remember.  I was very proud of it.

Doctor office visits and ER visits were a way of life for us.  I remember the first time I used it in a doctors office I received compliments on it from every medical professional.  I was happy I didn’t have to write all that information down on their forms.  Since it was being noticed I decided to make it “look nicer”.  Back in front of my computer – edit.  I gave it a name – MIMI – named after my daughter – My Instant Medical Information.  PERFECT!  If a medication changed – I updated it without a problem.  Doctor office visit – I had the date.   My stress level started to go down.  This was one area that I had confidence in!

My Mother’s BP was dropping; I was hearing gurgling in her lungs; her oxygen was low – I called 911.  The paramedics came.  This visit was very different from their first visit.  Outside lights on; inside lights on; front door open; EMT’s come in and this time I did all the talking – “Patient’s BP is; Oxygen level is; gurgling in her lungs; she is allergic to; here is medical information including her medications – the ones she has had today have been marked off; current conditions; etc.  Please take her to this hospital – I will meet you there.”  The EMT’s said  ”Yes Ma’am.”  They wasted no time; got her on the gurney and into the ambulance and off to the hospital they went.  When I got to the hospital the EMT’s were still there talking to the nurses in the ER.  When they saw me they said “Let her in – she’s the daughter of the CHF patient we just brought in….”  I went immediately back to where my Mom was and the medical staff was working on her.  The EMT said “Here’s the daughter….she’s the one.”  The doctor came up to me and said “That is some impressive document you have…..it saved your Mother’s life today.  Let me help you – these are the questions we like answered; this is the order that we like to read them; we like a printed PHR because we can see it instantly; no thumdrive – we won’t put it in our computer system; no cell phone – we’re restricted by user name and password, plus we can’t clip it to a medical chart; no wristbands – we don’t walk around with scanners.  Paper is perfect.  Get this in every home.  Congratulations.  Your Mother’s going to be fine.”  I walked away from that conversation smiling and envisioning the future.

Today I can tell you that I am proud of what I do.  I know it’s not glamorous – but it’s personally rewarding.  I realized at that moment the bags under my eyes were badges of honor.  That there were new reasons why my husband loved me so much that “normal” people would find very unromantic.  That I would drop my most expensive plate if I heard my Mother call me for help.  That my “business meetings” are now in doctor offices and ER’s instead of a boardroom. That there are no more “routine” days.  That I have partially learned a new language.  That I would love to become a nurse.  That I now get exhilarated when my Mother can “roll” from one side to the other.  That I hope I am teaching my children to love and care for others in the worst possible situation.  That I have said a silent prayer for myself and for all mere mortals who stumbled their way just like I did into the most wonderful of callings – - being a Caregiver.

Julie Slayton – Caregiver/Owner – MIMI Medical

Please tell me your story at MIMI@MIMImedical.com.