What a week….from a Parkinson’s Daughter….

Before I begin this post, I will give a warning, this is a raw, straight from heart, and an open look into my mind at the moment.  For the faint of heart, don’t bother reading, for the gutsy people who want raw emotion here it is.

Parkinson’s Disease is the “unknown” disease.  Plenty of people have it, but no one understands it.  It affects every person differently, some of the symptoms are the same, other’s are different.  it can carry on for years, and there is something called “status quo”, no change, no difference.

I am the daughter of a Parkinson’s Momma.  I am her caregiver, and there is another caregiver besides the Farmer and myself, it is Caregiver Beth.  Between the 3 of us, we try to give her the best care that we know is possible.

I have been my Momma’s caregiver now for 2 years. Momma has had PD for about 12 years. I originally quit my job to help the Farmer who was feeling overwhelmed.  Our philosophy was to keep Momma at home for however and whatever it took.

We met with some bumps in the road, and Momma was hospitalized and in ICU for over a week, when she rallied and was released into a Nursing Home for  4 months for Rehab.  She was finally released into our care, and she got to come home.  That was over a year ago.

A bunch of things have changed since that time, and the Farmer and I have learned to treat all of her stuff at home.  We went to her Doctor appointment a couple of weeks ago, and it was decided to have her g-tube (feeding tube) “re-done” so to speak.  What does that mean?  That means Momma had to go for surgery and have a new one installed.  The old one was kind of nasty looking and the valves were not doing the thing they were supposed to do.

We arranged for the Surgery and the Farmer and I, brought Momma to surgery and she sailed through it like the trooper she is.  My problem was, I was so darn relieved and excited she made it through, I did not pay attention to what the Surgeon had said when he did our consult after surgery.

Momma was home and was recovering nicely, no fever, no infection.  We had a snow storm, and Momma was supposed to go back to the surgeon for a “follow-up”.  I called the Surgeon’s office and after talking with his nurse, it was advised she did not have to come to his office, and I just needed to pick up some prescriptions at the pharmacy of our choice.

Over the past 2 days, I have “picked up” a BUNCH more meds for Momma, that we have tried to figure out the times that she could take them.  Simply because some cannot be taken at the same times as the others and need a 2-3 “window”.  After scratching my head, and Caregiver Beth and I both getting together and figuring it out, I think our schedule will work.    When I typed it up, and YES, I did type it up and color coded the meds….

As for Momma’s regular PD meds, we have 3 main ones, but we also have feedings, (she has a g-tube and cannot swallow, so all of her meals are liquid),  We now have to figure 5 other meds into the picture.

I am going to be honest here for a second.  When I returned from Wal-Mart this morning after finally picking up the last of the meds from Wal-Mart, after talking to the pharmacist and asking, does this one affect any of the others and can I just slide it in at an appropriate time?  I was answered with “let me check”.   I was advised I could slide this one in at any time, it would not mess up the other ones.

I asked the Farmer a question today, and I think he really thought about it before he answered me.    I asked “Dad, I know we have advanced technology and medically, but is it worth it to keep someone alive on pills when there is no quality of life and it is our own selfishness keeping them alive?”.

Medically we have advanced a bunch and I understand this.  BUT SERIOUSLY….

I say this with a heavy heart and a complete confusion. My Momma is nothing like what she was, she is a shell of her former self.  Don’t get me wrong in any way shape or form.  I love her with ALL of my heart and then some.  There are times, when MY MOMMA shines through, but there are other times, she isn’t there.  She is a scared person, going through the motions.

She has strength and stamina, but at what price?    Has technology brought us to a place where, maybe we should not be?  This will probably cause a bunch of controversy,   But ya know what?  I am at the place, where I am wondering why?

This disease sucks.  Not just for the person who has it, but also for the family member that deals with it.  I try to put myself in her shoes, and try to understand, but I don’t.

When I was giving Momma all her meds today, she even noticed there were some extra’s, and asked me why?  I didn’t have an answer to that question, I only looked at her and kissed her and told her “I love you Momma”.

How do you explain to a person who will not understand what you are saying, what you are doing?

But you know what?  I will keep doing what I am doing, if I only get that Momma smile, and she gives it to me, and grabs my hand and pulls me close and tells me she loves me.

I gave the Farmer his lesson’s tonite, on the new meds….what will be, shall be, it’s not mine to question, it is just to make happen.

To My Momma,….I Love you…

To the Farmer…..I Love you….

To Caregiver Beth… I thank you..

To the Electrician…Thank you for catching me as I fall……

To my family…..Thank you for supporting me……

y’ all for reading…..hope I’ve helped some……..

 

 

 

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3 responses

  1. the load is getting heavier……………

  2. I completely understand and you raise an important question. I just wish I had the answer – for you, me, all of us.

  3. […] What a week….from a Parkinson’s Daughter…. (camsgranny.wordpress.com) […]

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