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……..
As usual, when I take care of Momma on the “double” days, when I finally do arrive home, I find that I cannot sleep. While today, may not have seemed “hard” by some people’s standards. I found it to be hard by my standards.
First, let me say, I am not a CNA (Certified Nursing Assistant), I am a daughter, who has tried to learn everything she can about what we are dealing with. If I don’t have answers to certain situations, I research. If I still am not happy about the research, I get on the phone and call EVERYONE I know with a Nursing Degree, or my favorite is the Nursing Student. Simply for the fact, maybe they can explain a situation, that is new to me.
While maybe my first attempt, at a new “situation” might not be the right one, I try to learn as quickly as possible, what is best for Momma. The first time, I ever changed Momma’s “diaper”, I threw her legs up in the air, like I would a baby. Welp, I learned quick enough THAT was not the way to do it.
But sometimes, when hit with a different situation, I really don’t know how to act, and just plow through it. Maybe the “situation” I can handle, but dealing with Momma’s emotions are really rough.
You have to understand a few things, my Momma, is/was a very Independent person, who liked to take care of herself and always looked fabulous. She was very proud of her accomplishments. Momma, was not really “emotional”, in fact the first time I ever heard her and the Farmer “argue”, I was amazed. Momma’s got some backbone, because she stood nose-to-nose with the Farmer and let him have “what for”. Momma, is not the crying “type” either. Sure, when her Momma died, she cried, and when her Dad died, she cried, but she is not a “whiney” type of person. I think it has to do with that British “stiff upper lip” thing.
In the 9 almost 10 years Momma has had Parkinson’s, I’ve NEVER seen her just sort of “give up”. She attacks each new “situation” in true Momma fashion.
It seriously about knocked me out today, when she started crying and seriously getting upset. I stopped all activity and just held her, and gave her MY Momma Bear hug. We held each other, and then I stepped off, and she looked me in the eyes, and said “I Love you Joanne”. I told her “I Love you too”.
Momma wanted to go to bed early tonite. Tonya, and I helped her into the bed, and got her all comfy, and sure enough, she went to sleep. I gave her the 8 pm meds, and got frustrated, because I think her g-tube is clogged, and I’ll be bringing over a bottle of coke in the morning. But she slept.
I checked on her a couple of times, but those eyes were shut. I did have to giggle, because this morning when I went into get her up, she told me to “go away, I’m visiting India right now”. Uhm…ok, have a nice trip. So, obviously, while she is sleeping she is having some “adventures”.
On the physical side, there is nothing that Parkinson’s can throw at me, I can’t figure out a way to make it better. On the emotional side, that’s a whole different story. It hurts me to see HER loose it. While I know the “progression” of things documented by so many people before me, each case is different. Each person is different, and that’s what makes this Disease so different from any other.
My first thought, is anger. My second thought is empathy. My third thought, I don’t really know. This is a journey I am taking, along with the Farmer and Momma, I can’t think of any other place I would rather be….ok, well, that’s not true, because I would seriously take being on the beach drinking a pina colada with the Electrician, about now, versus what I’m doing.
I will leave you with this thought though, The Farmer always told me every event in your life builds character. Geesh, how much character does one person need?
My goodness my bones are tired tonite. I think the Electrician is trying to keep me busy. We woke up to a BEAUTIFUL day here in East Central Illinois. We actually have had record highs the last couple of days. With it hitting 80 degrees here today, and no Cam-Man to take care of (I just had to be at the Nursing home by 1pm),we decided to take on some projects.
Cleaning out the shed would be one of them, and well…let’s just say Camsgranny let the Electrician take care of that one. Oh don’t get me wrong, I helped him pull everything out of it, until I saw a spider nest with a bunch of spider’s running, and I don’t know what happened after that because I yelled to the Electrician “YOUR ON YOUR OWN”, as I ran into the house full speed.
I then decided that I would clean some windows, and mop my floors and some of that other domestic diva stuff. I opened up all of my windows and sliding glass doors (after I had cleaned them). Finished about 3 loads of laundry and then made lunch. After realising what time it was, I had to scoot.
I made it to the Nursing home only about 10 minutes late (Usually I’m on time, but for some reason, I was kinda dragging my feet.) I got there and Momma was doing a little kitty nap in her chair, but she woke up when I got there and she was bright-eyed and bushy-tailed. The Farmer was already there, and yea, he told me off for being late. Why is it, that even though you are a 50-year-old woman, when your Daddy gives you the “look” with a couple of well placed words, you feel like you are 5 years old again and in trouble?
We got past it, and then the Nurse came in to give us a “lesson”, on how to feed Momma with the feeding tube. I will admit, I was a little nervous, but after actually doing it, pfft….it’s a piece of cake. Tomorrow, I am going into the Nursing home early to find out how to give her, her medication through the feeding tube. I will say the Nurse who instructed us (Mindy), was so helpful and answered ALL of our questions, and made me feel completely at ease.
After our lesson, the Farmer had to run, so I sat with Momma for a bit, and then she wanted to hear the “band” in the dayroom. The Band was actually a one man guy who played some music that Momma really liked. She hung out for a bit, and listened and then I had to leave, but the Nurse told me not to worry, they would take care of Momma.
Momma has got 2 days left in the Nursing Home, she is being sent home on Friday, and while I had A LOT of reservations about it, I am now getting pretty excited about it. Things are falling into place and just the excitement that Momma is feeling has rubbed off on me. I think too, the fact that I have learned how to take care of Momma at this stage has eased my fears.
For other Caretakers that take care of loved one’s with Parkinson’s, this is a scary adventure. Mainly because I don’t want to do anything wrong, but I am learning, that with the proper teaching, I CAN DO THIS. The main thing to me, is that my Momma is happy, and I know how much she has missed being with the Farmer, that he’s the first one she wants to see when she wakes up and the last one she see’s when she goes to bed. Although she DOES like seeing me too.
That leads me into something else and I will post another post about it, but Momma’s room-mate has been gone for a few days. We have built a rapport with this woman. I wondered where she had been, and it seems one night she fell and had been in the hospital for a few days. She came back today, and both the Farmer and I, and Momma all welcomed her back, this lady doesn’t say much, but when we all told her Welcome back, she smiled so Big….it was heartwarming. She was in the dayroom to listen to the “band”, and I stopped in front of her wheelchair, and told her I was so happy to see her because I had been worried. She held my hand and smiled. Then I told her she was losing her room-mate as Momma was going home on Friday, but that I would , if it was ok with her, stop in and see her. Ya know what, I heard the first words in a long time when she said “Would you? I would like that”.
So, I’ve made new friends too. Life is a journey, we meet people and we do things, as for me…I’m travelling my road, and I’m picking up some friends along the way. I would not miss this for anything folks. I am truly Blessed.