While I have been living life ( by the seat of my pants) , lately. I have had so many Good days, that I kind of forgot about the bad ones. Things have been so jam-packed full of adventure lately, in other areas of my life, that I have kind of pushed all those PD feelings to the background, and really have not thought about them much.
Can I just say, while others of you are shaking your head, and saying “That’s not a healthy approach to the situation”, it HAD been working for me. Up until today. I’ve been busy folks, between this and that, I haven’t really had time to do things that I normally do. I found a little time out of my day today to realize, Sometimes when I am the happiest, is when I am not focusing on Momma and the PD.
Ok, I said it. Blast me for being an ungrateful daughter, but I have learned some lessons with this thing called Parkinson’s. Momma has it, I don’t. There I said it. I feel guilty when I have so much joy in my life, and then I come back to Momma, because with Momma, there is no joy. Yes, there are certain moments that amount to it, but they are few and far between.
Somewhere along the line, I got so caught up in Momma’s Parkinson‘s, that I forgot to truly enjoy life and all of its Blessings. I was so worried about, how she was feeling, what she is dealing with, has she “pooped” today, does she have a temperature, why is she doing “x, y, z”, is she going to die? That I stopped living for myself, and focused my whole being on her. THAT is not healthy, for me, nor anyone around me.
What I have learned in the last few days (THANK YOU Cam-Man), is life does go on, no matter what. Life doesn’t stop because Momma is having a bad day, I have learned to deal with it, and adjust, whatever I can to make her feel better.
Parkinson’s is a crazy disease, that a bunch of people are affected with. It is different from one person to the next, there is no cure. period. What I Have learned, is we make do with what we have and what we know, and if we don’t know, then we fly by the seat of our pants.
Momma, has actually had some really good days lately. We have new issues that we deal with daily, But ya know what? If I go back to that saying, “God will never give me more than I can handle”, and goodness knows I can lift a semi truck by myself at this time, it’s ok. I’m not on this road alone, I have a BUNCH of peeps at my side, who will help me IF I need it.
Sometimes as Caregivers, we get lost in the giving of care. It is SO important, to remember, YOU are an individual, who is dealing with the “disease” as well, maybe not as intense as the person who has it, but you still give care. I lost myself for a while, but guess what? I’M back……
The road is bumpy and filled with pot holes, you just have to learn how to manuever through them. It is so easy to get caught up with the “drama” and the feelings, but you truly have to look at your own feelings through this journey, and trust me when I say journey, because it is.
I’ve learned so much, and given so much, and received so much. Words could not even begin to describe it. I’ve learned some very hard lessons for me lately. They were a long time in coming, but I’ve learned them. I’ve always told y’all that I was on this journey for a reason, I’m just starting to figure it out.
Today was a very good day, in all aspects of it, and I told the Electrician this, and then went on to say something else, but he cut me off, because he told me, “Quit looking for trouble, accept what you have and go with it, because if you say something silly, it will happen”. He’s right.
I’m sorry but a song just popped in to my head, and call me silly if you want to but it is Doris Day singing ‘Que Serra Serra…”.
Life is good at Camsgranny’s house. I won’t say anymore.
Before I start my original post, I want to share with you something that happened to me yesterday. In a short follow-up of my post “In her eyes”, where I stated that I felt I was “unique”. The Electrician and I decided to splurge yesterday after church and we went out to “lunch”. We went to my favorite place called “The Habachi Grill”, we were celebrating the Chinese New Year, as yesterday was it. After stuffing myself silly (I burped a bunch). The time came for the check and the fortune cookies. When I broke mine open and read it, I sat for a few minutes kind of dumbfounded. The Electrician looked at me and asked me what was wrong. I showed him my “fortune” from my cookie, and he smiled at me and said “Yep, that’s you”. This is what the cookie said “Your uniqueness is more than an outward experience”. I took it to mean, that I am learning more from journey than I ever thought.
Ok, with all of that being said, I have to arrive at today. It arrived with me getting up and trying to wake up. I had planned to go over to the Farmer’s early to let him sleep in, and I have got that sneaking into the house thing down pat now. (Too bad it didn’t work when I was a teenager.)
I gave Momma her first meds of the day, when she saw it was me with my cold hands on her warm body, she kind of giggled, but then promptly fell back asleep. I got busy doing the things I do. The Farmer surfaced, and truly enjoyed sleeping in.
Momma had a Doctor’s appointment today, and while I know she gets nervous, things seemed to go smoothly, with the exception of the Farmer. I got Momma up and dressed and shiny and clean. She was all for her adventure (simply because she knew we were not leaving town today). The Nurse was coming to help get Momma into the car and go visit the Doctor with us. We needed her “Nursing skills” to help us ask the Doctor questions.
The Farmer was getting ancy because he thinks he needs at least an hour to get to a place 15 minutes away. (No offense Dad, but we still made it at the appropriate time of 15 minutes early, just sayin..) Momma was buttoned up buttercup in the Farmer’s jacket, because it has a hood on it, and we were giggling about how the hood went over her entire face. My thought was something from Star Wars….where the hoods covered all of their faces. Momma was ready to roll out to the car that the Farmer had warming up in the driveway, and he was getting a little snippy with me. The Nurse pulled into the driveway, just as we were rolling Momma out on the ramp. She jumped right in, and got Momma all seated in the back seat, and rode in the back with her.
I felt a little ousted of my “spot” in the backseat with Momma, as I had to ride in the front with the Farmer. But when I heard the giggles and love from the backseat with the Nurse and momma, I was okay. You see, it’s been a while since the Nurse has had time to spend with her Grandma, and while she’s my Momma, she is also the Nurse’s Grandma. They have a special bond, and I can see it. After we had checked in with the Receptionist, and Momma and I and the Nurse were sitting together, the Farmer was across from us, Momma actually said, looking at me and the Nurse “I love you guys so much”. I thought my heart would burst from the love between all of us today.
We arrived at the Doctor’s and the Nurse was examining Momma’s feet when the Doctor arrived in the room. Giggles were spent when the Doctor asked if he needed to look at Momma’s feet, and it was a decisive NO from the Farmer, Momma, Me and the Nurse. The exam went well, and everything is normal. Well…as normal as it can be with Parkinson’s. We were advised to try some therapy on Momma and a heating pad too, because of Parkinson’s her muscles tend to spasm, and we need to massage them more to give her some comfort.
We set up another appointment to have her (as the Farmer stated) tummy tube replaced. (It is actually a feed tube, and that is not the correct term). Momma has another appointment to change her feeding tube, she will have to go through another surgery, and we made the appointment for a time we will all be available.
We loaded back into the car and arrived home, and then gave Momma a break, she was much more relaxed when she was at home, because Home is her safe place. I know this. I cannot even begin to explain what it meant to Momma and I and the Farmer to have the Nurse go on this trip with us. Momma sure enjoyed it, and even made some giggles with the Nurse. The Nurse even mentioned to me a couple of times how much she has missed Momma. The funny thing to me, and ok, this next part might be graphic, but when we got Momma home the first thing we did was to put her on her toilet. I believe she was happy about it because she did her business. But when it came time for the cleaning up part, I was the one that put on the gloves, and cleaned Momma up. I looked at the Nurse, and told her, “Uhm, I realize you are an LPN now and you don’t do this anymore huh?”. Momma and the Nurse both laughed, because Yep, it’s true.
Today, was a day that is filed in my memory banks, it was truly a GOOD day. Thank you to my daughter the Nurse, and thank you to the Farmer who did not have a heart attack because he thought we would be late.
But most of all, Thank you to Momma, who is truly a trooper, and has the strength of someone I can only wish to be. I Love My Momma.
Camsgranny is tired, ya’ll have no idea. Well some of you may. I feel like I have lived a lifetime today. I’ve been up, I’ve been down, I’ve felt good and I’ve felt bad.
I have come to the point in this journey that I have done something called, acceptance. It’s not an easy word to write nor accept. I have had long talks this past week with Caregiver Beth, and Dad. Neither of them made me feel any better. I also had a long talk with Momma today. That did not make me feel any better either.
I am not trying to “borrow” trouble so to speak, but I Know what’s coming.
This past week has been filled with trials and tribulations. Folks to put it bluntly, we are scared. Well to clarify that statement, the Farmer and Caregiver Beth are scared. You see, this past week, Momma showed Caregiver Beth and the Farmer something I deal with on a daily basis.
Momma cannot swallow. period, end of sentence. I have researched the topic in-depth GREATLY. When a Parkinson’s‘ patient gets to Stage 5, it’s all kinds of trouble and nasty things that the family has to scramble to make right. But you have to realize “YOU” cannot make it right.
The only thing to do at this point is to make her comfortable, happy, and go with the flow. I really am not trying to be depressing at this point, I am just letting y’all know it’s nasty in my world right now.
Caregiver Beth see’s it and is scared, The Farmer see’s it and does not want to acknowledge it. I understand both reactions. I guess that’s why, I am the strong one so to speak. I see it, I understand it ( to a degree), I’m not happy about it, but I also understand what we have to do at this time..
This is Momma’s time, we make her comfortable and make her smile, giggle or whatever, Momma is scared too, of the unknown. One of the things that stands out in my mind today, is something Momma told me. “Thank you, for everything, you have made me happy in more ways than you know, and I love you daughter, just like you were my own.”
I am her own, because I was the only daughter she would have in her life, and she is my Momma. While I may be torn up inside, I know, that everything I do to help her through her journey, is only to let her know she is loved, and if I can bring A GIGGLE to her face, and let her know she is loved, then it is all worth it to me.
Parkinson‘s totally sucks some green Twinkies. I say this, because MY Momma will always be the woman she was, not what Parkinson’s has turned her into, but what I remember in my mind, of all of the things we have had.
Today with Momma was a good day, she knew who I was, and responded to me, in true Momma style. It’s not going to get any better, and I know this, she’s going downhill, and I know this also.
But ya know what? It’s our journey, and we will do whatever it takes.
Today was a different day for me. My routine was challenged, and I proceeded with how it was going to be. I made an appointment last week that was long over due, and went with it. You see, I am a Caregiver, and while I spend most of my time giving care, I don’t necessarily take time out of my day to help me.
I am not a fashionista, wearing sweats is usually how I approach my day. I don’t do the makeup thing, I was never actually tought how to put make-up on, I’ve always winged it. Most of the time, I for-go it. period. While I understand, that the Electrician loves when I dress up, I don’t usually do it.
Today was different for me though. I made an appointment with my “new” hairdresser last week for this week. Today was “MY DAY” so to speak. . I will admit, I felt guilty, first for spending the Electrician’s hard-earned money on me, and 2, well I just don’t normally do that.
When I woke up this morning, I felt a little bit bamboozled and a little lost. My routine was different. When I realized, I had time to do the things I normally do, but with a little extra time, I was well….flumoxed. I did the laundry and vacuumed the floors (up and down), and took all the trash out, not to mention playing on the internet…Geesh…I kinda did not know what to do with myself.
I will admit, I was a little nervous about going to my “new” hairdresser. I’ve had the same girl do my hair for the last umpteen years, and well, to be honest, a girl’s hair is sacred.For me? I’ve had Cancer, and I’ve gone through Chemo, and I think that is why I will not let my hair be short, for now….I’ve been bald, on several occassions, and I think that’s why it grows long now, my form of rebellion. I should have known though.
Today…yes, I am happy. I’ve had one of the most relaxing days, spent some good time with my hairdresser, and well, I’ve been relaxed all day. For me, this is the best. Things with momma are not that good, I will not go into detail other than to say the Farmer has dealt with somethings, that are a regular thing for me.
While today I was selfish, because I truly loved my day, who wouldn’t? Being pampered and having someone give you a scalp massage and talk to and it being an over all good time? I did pay it forward though, don’t be mistaken that I didn’t. When I did arrive at the Farmer’s house, I promptly gave Momma a hair wash, that she even sighed over. I massaged her scalp, and then blow dried her hair and she was even smiling. It might have been about an hour after she expected me, but I was there.
I’ve learned some stuff today… Sometimes, we all need that “special care”, no matter who we are, what we have, and what we are dealing with. Sometimes, we just need to feel pampered, and then refreshed and then, we can do what we have to.
This is me today…and hat’s off to my hairdresser for making me look good…..