Saturday, 20 July 2013

Advocate (like no-one is watching, and until someone does!)

Carol Joy in her 30s
This road is difficult for all of us...especially for Mom...

She cannot move or control her body.  Her means of communication has been reduced to smiles, mumbles, gasps and winces.  She is my mother, and now that Alzheimer's Disease has stolen her voice I feel a duty to make mine heard much louder and clearer than before.

Much as it pains me, I know it is important to share the sad moments with you too, to give those just embarking on this roller coaster ride an idea of what to expect.  I wish someone had prepared me for what was coming...I think it would have given me the unspoken permission I need to feel sad, relieved, frightened and angry...all the while knowing I am not alone.

Things continue to decline.   Mom cannot even squirm to adjust herself in her wheelchair.  She cannot tell us if she is in pain other than to gasp or cry out.

New problems have surfaced over the past couple of months, which are exacerbated by her diabetes and Paratonia...she has developed her first pressure ulcer (aka bedsore) and while it's not infected, it's also not healing.  She also has these inflammations on her middle and ring fingertips on one hand.  They look sore and she winces when they're touched - which is often because they need to keep her fingers limber by placing them in splints.

I keep asking for them to be looked at - sounding more and more like a broken record.  She's been on a couple of rounds of antibiotics with no success.  They tell me there is no infection.  While I am not a doctor, I know something is wrong and this is not normal.  Everyone tells me the fingers just look like that now, that this is a normal side effect of the progression of her disease, that it is "not their department" - you need to speak with "so and so" in "such and such" department.  So I have been asking....the Occupational Therapist, the Nurses, the ATC staff, the doctor, the PSW and the Paratonia Study Doctor.

I have worked together with Mom's caregivers: Mildred, and Cristy, who is covering Mildred's maternity leave.  They work tirelessly to keep her nails short and to soak her fingers in Epsom salts thrice daily. They keep her dry and clean and the bedsore covered.  Nothing is working.

A couple of weeks ago a new face (to me) appeared in Mom's room when Becca, Dad and I were visiting. She was bringing in new saline and gauze for use on Mom's bedsore.  I asked her about Mom's fingers.  She pleasantly told me that they are not infected, that this is a Paratonia issue, and I need to deal with that department.  I explained that each department tells me to speak with someone else, and appealed to her for help.  She told me to ask for a family meeting, that they cannot keep giving my mother antibiotics or she'll end up with C. difficile.  I said I don't want antibiotics, or to tell them how to treat this - but look at her hand - we need to do something!

Carol Joy in her late 30s/early 40s
Let me stress that I was polite and pleasant.  Becca is my harshest critic and tells me whenever I am snooty or clipped,  and she found no fault with my manner that day.   But somehow I made a bad first impression.  Now, when I walk into the unit, I get the once-over...you know the one - where they look you up and down with just a hint of attitude, like in high school when you walked past the popular mean girls?  Oh well, it was juvenile then and it still is, and I couldn't care less...except that my mother needs help, and now that I am seen as a pain, I'm afraid she's going to get even less help...

But I am a tough broad - my mother taught me well.  The following morning I called for a family appointment and insisted that ALL departments be represented at the meeting so we can get to the bottom of this.  Then I bought Epsom salts for Cristy to soak Mom's fingers.  I also asked her to ask the nursing staff for polysporin for the fingers...this request was flatly refused, citing that my mother is not a burn patient and polysporin is for burns...OK...so I bought our own tube of polysporin!

In the meantime, the ATC staff called me to find out why I called them into the meeting.  I explained the problem.  Bless her...she listened.  (Let's call her my ATC Angel).  She told me that bedsores are not normal, and arranged to see Mom before her next Botox appointment.  She said not to do anything before she looked at Mom's wheelchair, etc.  She arranged for the OT to be there.
Mom & Dad, newlyweds in the mid 1960s
Monday noon came and I closed the office (Dad was now really sick in bed with his "cold") and went off for the appointments.  Sara came with me.  We went to meet my ATC Angel.  She spent a lot of time with us, re-adjusting the wheelchair settings that should never be changed (ugghh!), teaching Cristy exactly how to tilt and support Mom in the chair, and then it happened.  She touched Mom's hand.  Her gasp stunned us all... ATC Angel looked at Mom's fingers and confirmed that it definitely was not normal!  And at the end of the appointment she looked up at me as she wrote her report and said I was right...that my concerns were valid and I need to trust my instincts.  I started to cry...they were tears of relief.  After 2 months of asking for help, and being told she was fine, I began thinking that I was the problem...now I had confirmation from someone in the know that it was not me being difficult.

On to the next appointment ...the Botox follow up...this was a crucial meeting, especially because everyone is telling me that Paratonia is the root cause of her fingers being inflamed, etc..  I learned a lot at this meeting... most of all that I need to be present a lot more.  They need to see my face, even if it annoys them.  I cannot rely on others to take the reigns and ensure that appointments are made and follow ups are done.

It turns out that a referral to Dermatology was made by the Botox Clinic following the May 27th visit, when the doctor determined my mother was suffering from Paronychia (ingrowing of the nail from the sides).  No visit ever happened.  I have yet to determine if an appointment was even made.  I was not at that Botox appointment.  It is hard for me to close up my office each time and run to routine appointments - our clients rely on me to be there during business hours.   But clearly, I need to be at the appointments to advocate.  Now I am worried and guilt-ridden.  The doctor came in and tried to look at Mom's hand.  Another gasp - these aren't dainty little gasps, but full-out cries of pain.  The doctor confirmed what I knew...there is something really wrong with her fingers.  They should not look that way.  They are inflamed and likely infected and need to be seen by a doctor who deals with wounds.  The problem is not Paratonia, although the "paralysis" of the fingers does not help it.

Our ATC Angel and Botox doctor both said that Mom needed to be seen by the wound clinic - I didn't even know there was such a clinic.

I got home and immediately called Mom's attending physician.  I no longer feel comfortable turning to the nurse for help - she obviously views me as a troublemaker.  He agreed that Mom has paronychia, but attributed it to the Paratonia.  I asked him to humour me and make a referral to the wound clinic.  To his credit, he agreed.

Life went on...Dad was still really sick and getting worse...so Sara and I dropped the polysporin to Cristy on Tuesday and then picked up Dad to take him to the doctor.  His breathing was shallow...something was not right.

TRUST YOUR INSTINCTS...I need to remind myself of this...the doctor said it was likely pneumonia, and we needed to get a chest X-ray right away and get him on antibiotics.  We dropped Sara at home, headed to the lab, got his X-ray, grabbed a quick bite to eat a Centre Street Deli (where I had not been since I was last there years ago with both my parents) and then filled the prescription.  I got Dad settled at home, with home-made chicken soup with lokshen, jello, etc., and went home to fall into bed.

The next morning they confirmed it was pneumonia.  Oy and vey!  I had 2 sick parents, an office to keep running, and a brother out-of-town on business!  That's when I need to tell you that I am blessed.  I have a husband who steps in, no questions asked, and does what needs to be done so I can do the same. Carlo is my rock, my best friend and this week - my salvation.

So, between running to my Dad's to make sure he was OK, and keeping the office running, I was a little tuckered out.  And then on Thursday I got a text from Cristy.  It was 12:39.  Was I coming to the wound clinic appointment?  WHAT?!?!?  I had no idea there was an appointment.  No-one told me.  It was at 1:30.  I had a Bell repair technician in my office and a client coming to drop off important documentation.  So I said I would try to be there.

For those of you who are not GTA (Greater Toronto Area) residents, allow me to explain.  It is a 45 minute drive from my home to my parents' respective homes.  Depending on rush hour, it is the same drive to my office these days (thank you urban sprawl).  It is a 20 to 30 minute drive from my office to Mom or Dad's places.  And coming home from their places during rush hour is a 60 to 90 minute drive.

So...I MADE IT!  The Matriarchs must have been shining down on me, because I was in the examination room 5 minutes before the doctor came in.  I saw the bedsore.  My heart broke.  This is my mother.  The woman who gave me life, and sustained me through 9 + 1 operations (one I was in my 30s), through heartbreak and celebrations, who loved me with every fibre of her being.  And look at her now.  I pray she does not know what is happening to her...

The Wound Clinic doctor confirmed what I knew all along...she has an infection in her fingers, and a bedsore that won't heal but thankfully is not infected.   The doctor prescribed topical treatments for both, and a different antibiotic for her fingers - BECAUSE THEY ARE INFECTED.  The joke is that they looked ten times better at this appointment because of Cristy's relentless efforts to soak her fingers, dressing them with polysporin I brought in after my request for some was refused.

As we waited for the porter to help us back to Mom's room, I gently stroked her head, and kissed her forehead, all the while telling her that it was going to be OK now...we finally got help, and the hurting will stop.  I told her not to worry, that I was a tough broad, just like she taught me, and I will not let her be forgotten.  She looked up at me with clear eyes and smiled.  And as this moment unfolded, I remembered lying on a hospital bed, scared and hurting, with my mother (and father) stroking my head and telling me it would be OK, that they would make sure of it.

Mom and me...once upon a time, when she was my advocate


I put a call into Mom's unit clerk about this yesterday.  He assures me that this nurse is one of the best they have, with a heart of gold.

Maybe she is, maybe we got off on the wrong foot.  I don't want to go after anyone and have them punished. I don't need another best friend - I have enough, thanks.  I just want my mother to be cared for, and her suffering to be acknowledged, taken seriously and alleviated wherever possible.

So I am taking my concerns to the floor supervisor. While no-one needs to like me, they have a professional duty to ensure my mother is cared for.  They have a duty to take the time to listen to her family's concerns, to document them, and to seek appropriate care.  If they are not authorized to dole out medications or salves, they still need to note the request and bring it to the attention to someone who is authorized to do so.

And Dad...he is improving daily, thank G-d.  He is a tough cookie, and not much keeps him down.  But I am cooking for him, making sure that he has healthy, home-made meals to help him regain his strength and recover from the pneumonia.

What's the lesson I've learned from all this? ADVOCATE, and keep advocating...and trust your instincts...because eventually someone will hear you, and help.