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……..
Today, I arrived at the Farmer’s and he is sick. I am not going to bust him out, that he has a cold, and that installing a new mailbox yesterday, probably did not help the situation any. Ok…let me back track here for a minute.
I arrived at the Farmer’s yesterday, and was truly amazed at how good of care, Caregiver Beth and her husband, had taken care of the Farmer and Momma. I drove into a freshly dug out driveway, and entered the house, and it smelt clean. (This is because she stepped up and came over and took care of them, while my happy butt was in a ditch). Thank you Caregiver Beth!!!!
The Farmer was on a track yesterday, to reinstall his mailbox, which somehow, got plowed over by the snow plows from our snow storm. Yes, folks, his mailbox and the neighbors mailbox was in the ditch. For some unknown reason the Farmer HAS to get his mail everyday, and sometimes it’s like Christmas to him. With that being said, when I pulled into the driveway, he was in the garage, working on the board that houses the 2 mailboxes. Now, yesterday was kind of cold, but the Farmer had decided he would put up a new mailbox no matter what.
After cooking him breakfast, the Farmer took off in my car and went to get a new mailbox and do a couple of errands. (Thanks Dad for putting gas in my car). When he arrived back at the house, he asked for my help in putting the new mailbox up. Now, I don’t know about y’all, but I LOVE power tools and the opportunity to use one was like a kid with an all day sucker. What I did not realize, was that he simply wanted to me hold stuff, and NOT use the power tools. Burst my bubble big time. Needless to say, the new mailbox was up and running. It also has a neat feature, that the Farmer purchased, when the mail is inserted into the box, and the door is shut on the mailbox, an alarm goes off in the house. Kinda cool huh? Not to mention that he also has a new driveway bell. The Farmer is getting kind of high-tech on me.
Ok, now I digress. Today, when I arrived, the Farmer was down and out. So, I took care of him and Momma. Momma had a follow-up appointment from her Surgery on Friday. Being that we still had snow on the ground, and the fact the Farmer was not feeling good. I called the Doctor’s office. Momma is doing great after her surgery, no fever, no ill effects, and to be truthful, it is a major production to get her in the car and take her to the Doctor’s who will see her for 5 minutes and tell us stuff and send us on our way, and another production to get her back into the house and back to normal, simply because it takes her outside of her comfort zone.
So, I called the Doctor’s office and advised that Momma was fine and if the Doctor was okay with it, could we forgo the appointment? Well apparently, one of the tests they did on Momma when she had her surgery came back positive, and the Doctor had ordered some meds for Momma and it was ok to not bring her in. They would call the scripts in and then we could start giving her the medicine. I gave them our pharmacy and then I got a call from the pharmacy. They had a question for me, wasn’t Momma allergic to penicillin? Uhm, yes. Another phone call back to the Doctor’s and advised one of the meds would not work. So now, after all day phone calls, Momma has 3 meds ready to be picked up and one more to be ready after 3 pm tomorrow.
I guess the phone calls are better than to have to drag Momma out of the house, but now I have a call into the Doctor to ask what the heck does Momma have that she needs 4 medications to make her better? I guess I should have paid more attention to some of the things he said after surgery, but to be honest, I was just so thankful it was all over that I may have “zoned out”.
Please, believe me when I say I am not complaining, because I’m really not, I’m more confused than anything.
So, when I go tomorrow to pick up Momma’s meds, and some cold medicine for the Farmer, I will be asking the pharmacist, what the heck…..
But on a happier note, I am almost over “my cold” and I will take care of the Farmer and Momma tomorrow, and see what else is in store for me. Because ya know what I realized tonite? I am very Blessed, just to have both of the Farmer and Momma, many kids my age, do not have their parents. Mine are both still here and I truly love caring for them.
Sometimes, I may get “too involved” and the rest of my family may feel left behind, but ya know what? I Love all of ya….and y’all know I’m here for all of you. Thank you to y’all, for letting me be, me and do what I feel the need to do.
I am a very Blessed little puppy…..plus, I’m hoping should I never need the help, y’all will take care of me….
I’ve already filled y’all in on my Monday of this week, but after that, things kind of went downhill from there. I would have posted that post on Monday, as I had originally planned, but well, welcome to my goofy world. The post disappeared into cyber space and I have just now found it again.
maybe it didn’t disappear, and I just lost it? Who knows….onto the rest of my fun-filled action packed week…..
By Tuesday it was evident that little dude was not up to his normal stuff, and it was decided we would make a Doctor’s appointment for him. The Nurse made his appointment and due to obligations for the remainder of the week, we negotiated and I would take little dude to the Doctor by Wednesday.
On Wednesday, we headed out and did our fun-filled activities at the Farmer’s house, and left a little early so we could head to the Doctor’s. We also had a plan of action today as well. Cam-Man knew after the Doctor’s visit, he would be getting some ice cream.
We arrived at the Doctor’s and after giving the appropriate paperwork, we sat down to wait. They called Cam-Man’s name and he swaggered into the exam room. He knew what he was there for. We went out after taking off his coat, and little dude got weighed, and is now a full 30 pounds, and then measured for his height.
Back into the exam room, and the nurse asked why we were there today, Cam pointed to his ears and nose, and also his underarm. When his regular Doctor came in, she was a little disappointed that it was Meemaw and not the Nurse who was with Cam (she loves to hear the Nurse laugh). Cam told her he was coughing, and had “yucky” ears, and also a bunch of skin tags under his arm. We got our prescription and were on our way. After loading up into the Rav4, we drove home, and Cam got his ice cream.
Thursday was my double day, so I brought Cam with me in the morning, and the Farmer and Cam played for a bit, and then I came back and put Momma back to bed. I kind of had to prep her for the next day (Friday), because there were events planned she had no idea about.
When Friday am arrived, I got up in the dark, and drove over to the Farmer’s, the plan was for him to sleep in, and I would get things ready. You see, Momma was having surgery to replace her g-tube (aka tummy tube) today. Due to the surgery, I was only allowed to give her the first round of med’s in the morning with a minimal amount of water. When I woke her up and gave her the meds I told her, “We are going on an adventure today, so I will let you go back to sleep for a bit, but then I am coming in and getting you up at about 9:15 am OK?” She mumbled something but was okay with it.
When I came back to get her up, she was a little feisty, and ready to roll. Things went pretty smoothly, and I was able to get her dressed, into her wheelchair and out to the car and then into the car with no problems. She actually was kind of fun on the car ride there, because she was talking up a storm, noticing new things on the drive, and then when we arrived at the Surgery center, she kind of quieted down. After getting her out of the car and arriving, she went straight up Parks, and I knew we were in trouble.
We went in and let them know she was there. The Nurse came out and took Momma back with her, but came out a few minutes later with some questions, then came back a few minutes later with more questions, so I asked her if it was okay, if I came back with her. When I got back to the “prep” room, Momma was for lack of a better term, “Parked up”. So, I did what I normally do, and got her undressed into a gown and onto the gurney (by myself) (this is not being disrespectful to the Nurses in any way). Momma was scared. I knew this, so while I was getting her undressed and into a gown, I was making jokes and getting giggles, and trying to relieve the tension, that you could cut with a knife. I answered all of the Nurses question’s, and I kept telling Momma, she had to remember her name and ALSO her birthdate, because she was going to have to tell a Nurse that information.
Momma was prepped, and I took her picture all ready for surgery, out of privacy for Momma, I will not post it, but I did show it to her after we got home and she smiled. They took Momma off and I sat with the Farmer while the “deed was done”.
I had asked the Nurse if she would come and help after Momma had surgery, and she told me to call her when it was over. Now, I will be honest with y’all here, I know it was a routine surgery, but I am here to tell you, NOTHING with a PD patient is routine, so I was nervous. When the Doctor came out and called Momma’s name, the Farmer and I went into the little “discussion” room they have. Momma did well with flying colors, and there were only a couple of things that concerned him. After discussing the problems, we were told we could see her in about 20 minutes.
I called the Nurse, who said she would be there in a few. The Farmer and I were allowed to go and see Momma. She looked so peaceful, and had answered the Nurse’s questions about her name and birthdate. We waited while Momma came out of the anesthesia, and when she woke up, well….she wasn’t really happy with me.
The Nurse arrived and kind of took over. (THANK GOODNESS FOR DAUGHTERS). I left Cam-Man with his G’pa and went back in to help however I could but the Nurse, already had Momma dressed and into the wheelchair. (WHEW). So, I loaded up Cam into his Momma’s car, and he and I took off to go open up the house and get it ready for when they arrived.
When the Farmer arrived, we had the house almost opened up, and the Nurse got Momma into her wheelchair and we got her cleaned up and into bed. Momma was still cross with me, but she was ok.
Momma is sporting a new g-tube, and after the Nurse gave her a feeding and her meds, Momma was a happy camper. She went back to sleep, but did tell all of us, she really did love us.
So….that was my week, my weekend was another adventure, as the Electrician and I were keeping Cam-Man for another sleepover…..stay tuned for that one…..