I know I have been gone for a bit, but I have been trying new adventures, and trying to become myself again. I never understood, how totally immersed I was in being in the Parkinson’s world. I am learning how to be the “daughter” again instead of the “caregiver“.
My usual routine has dramatically changed, and I am becoming accustomed to just being able to do regular things. It is a little strange to me, and I’ve had some moments.
I’ve been spending ALOT of time with a little certain someone.
This little kid, rocks my world. He is so full of life, and asks a million and one questions, that he keeps me on my toes.
I took myself on a little retreat last weekend. I left town, armed with a swimsuit, and some clothes, and went about 2 hours away and checked into a hotel room. I did a bunch of reflecting, sleeping and swimming in the pool. My girlfriend and her family arrived the next day, so we had fun, walking all over the town and just goofing off. I came back from the weekend, with a new attitude, and a feeling of being relaxed and in control of my thoughts.
I do not feel as stressed and desperate as i did. I have done some things in the past few weeks, that I never thought I would do. I now walk/jog every evening, and am watching my diet (well, eating and watching what I eat, while I eat it.) I’ve gone on some adventures.
I actually went to the Circus, with little dude and his Momma. I do have to say, the last Circus I went to was in Russia, when I was 16, and while this was nothing compared to that, I found enjoyment in the awe on little dude’s face.
My days have been busy, and I have gone to visit with the Farmer and Momma. It is strange sometimes, to not take care of her, but we seem to have a bunch of conversations, and true joy now when we get together. I don’t get the anxiety, nor the desperation feeling. I do not leave the house in tears, I now leave the house laughing and enjoying the time.
For me? It is nice to go back to being the daughter of a Parkinson’s Momma, and not the Caregiver of a Parkinson’s Momma. It took the Farmer a little bit of time to understand this. While I may have been an excellent caregiver, the price was to high for me.
I am glad, I am slowly becoming me again. It is taking some time, but I am on my way back!
Until next time, take time to smell the flowers and laugh and giggle as much as you can. Oh yea, smile at a stranger, it might make their day, and you will feel better too!
I am a daughter of a Parkinson’s Momma. I am not a medically inclined person, in any way shape or form. I have been an Insurance Claims Adjuster for about 15 years, and then followed my true love of food, and been a waitress, chef, and manager of a restaurant for about 7 years. This was all before I gave it all up, because My Momma had Parkinson’s.
On a wild day, when the Farmer was a little over whelmed, I made the comment I could come and help him, and take care of Momma, and give my job up, but I had one problem. I had just bought a new car (well…new to me) and the Electrician while he makes good money, did not need to be saddled with bills I had incurred. The Farmer and I made an agreement, and so it was born. I would give up my job, (although to be totally truthful here, it was either be fired or quit, because I really do have an alligator mouth that over rides my rabbit ass.)
So, it came to be, I would be Momma’s Caregiver. At first, it was a walk in the park. Momma still had her facilities about her, and only needed help with maybe getting up and taking a bath, and maybe washing her hair. While the Farmer is my Dad, he was not as fastidious, not my Momma, about keeping things clean, so I busied my days with cleaning house and taking care of both of them.
The Electrician was on the road at the time, so time I spent with them, and was not giving up any time other than being by myself. The electrician came home on the weekends and the only thing he asked of me, was please, be home at that time. Piece of cake.
unfortunately for me, Momma had a really BAD spell, this was after the Electrician had finished his time on the road and was home. You see, I didn’t just take care of Momma, I took care of Cam-Man. I can remember this clearly in my head like it was yesterday. I picked up Cam-man, and his Momma had told me he didn’t feel good. The next thing I knew, I was down and out, so was the Farmer and Momma too. I recovered sorta, and went over to the Farmer’s. I puked at Momma’s state, and knew, we had to call an ambulance.
Momma spent 7 days in the ICU unit, and was released up to the fourth floor. Next thing I knew, I got a call and Momma had stopped breathing and I rushed to the Hospital, full of prayer, and crying the whole time. Momma survived that experience. I don’t think I have ever been so scared in my whole life.
Momma was accepted into a Nursing Home (Thanks to the Nurse, who worked there and spoke to the DON). Momma started therapy, so she could return home to us. She went through 4 months of therapy, and was finally released. She came home. The whole house was re-arranged to accommodate her new “life”.
With momma’s ‘new life” there were so many changes we had to make. We hired “Caregiver’s” simply because the Farmer and I could not handle it on our own.
THAT was almost 2 years ago. I have been Momma’s full time Caregiver, and also taken care of the Farmer too. It is with deep sorrow, that I can no longer do that.
To anyone reading this, for the first time. I ask you, Could you do that? I have been torn two sides of Sunday and then some in between.
I am me. I puke at the sign of snot, anyone who blows their nose in front of me, I will probably puke. Anyone who coughs up anything, I will puke. Blood? do not get me started….I was never inclined to be anything other than I am. I love food, and cooking. period.
The past few years, I have accepted and done what I thought a “good daughter” should. I have made family members suffer from my “absence”. I never thought it would affect me like it has. This is not about my family members, this is about me. period.
I’ve tried to explain to the Farmer and also the Electrician. I have had many conversations with many people, but at the end of the day, it comes right back to me.
Forgive me for being selfish at this point in my life. Don’t get me wrong in any way shape or form. There are people who are on this earth to go through what I’ve been through and they can do it. I’ve reached a point, where I cannot.
I had a very long conversation with someone who is special to me today. She answered some of the questions I had, I also had a very long conversation with a family member today, and she gave me the same answers.
I give……period. This is a painful journey, and I have to cry “I’m done” at this point. I can no longer give up the personal sacrifice, nor can I do what is expected of me at this point.
Have I hurt peeps at this point, oh yea, I have. But when you are in survival mode, you have to give up something. I cannot go down with the ship. Will I be there, HELL YES, but I cannot lose myself in this thing anymore.
So my confession is this. While love the Farmer and Momma too, I cannot do this anymore. There I said it. I am ME. and Momma knows this, she gave me the words yesterday. This whole situation is killing me softly, and everyone and relationships around me. While it is a daughter’s duty to do this, I give. Because simply, I am me, and I give……
I want my old life back. i want to be free again. I don’t want to have to worry about the things I have been worrying about. Trust me they never go away, but when Momma told me yesterday, “I am ok, go and do what you NEED to”, well it hit a chord in me. Momma knows me, probably better than most.
I simply cannot deal with what SHE has been given. So while it breaks my heart, I’ve removed myself from the situation. It doesn’t mean I won’t still be there checking up on everything. It just meant, sometimes things are so painful you have to remove yourself from a situation and re-evaluate what you have.
I love my Momma, but it has become to painful for me to be there. While it may make sense to some, it really does not to me, but it is something I have to do.
Hey Y’all…How are all of you doing? While I have had my blog going on 3 years now, I used to post daily. After the first year, I still posted daily and was a proud member of the Post a day, I did it for the first 2 years of my blog. Somehow…life seemed to get in the way, and I quit laying down all the words on paper (so to speak).
Somewhere along the way, some things got to painful for me to write down anymore. You see, if I write them, that makes them real. Maybe I have been running from them, or maybe I just don’t want to “share” that part of me. I’m not sure of the answer.
Lately, I feel, I have been on “overload”, and no one seems to understand it, least of all me. I’ve been mean to my husband, I’ve been mean to the Farmer, and I’ve cried buckets. Sometimes, I feel so torn in every direction, that somewhere along the line, I “lost” me.
Yes, I am the daughter of a Parkinson’s Momma, yes, I am the Farmer’s daughter, yes, I am the Electrician’s wife, Yes, I am Momma to the kids. Yes, I am “Jo” to Cam-man. But lately, I’ve wondered, who is Jo?
I had kind of “AHA” moment this morning at Church, and the sermon filled my heart. But after hearing it, I went on and was mean to the Farmer, of which I apologize for.
Sometimes, things hit me and I do feel on “over load”, there is so much I feel compelled to do, and not a lot of people understand it. I don’t understand it, and it’s me.
I feel guilt in my heart, for things I’ve done recently, and I don’t want to be the nasty person I am and can be. I can only hope that the Farmer and the Electrician can understand me, they know me the best.
It’s not an easy road I walk, I try to balance everything and everyone, and do the best that I can. Sometimes I fall short of everyone else’s expectations. But I guess I will say to them, I am me, and I am doing the best I can with what I know.
I do know in my heart, I am meant to take care of Momma, and give her peace, when peace is sometimes hard to achieve. There are times, when I could just curl up and give, but I won’t, because Momma needs me right now, and I’m sorry to the rest of my family, that may have to do without me at certain times, and may have to do things for themselves. But honestly, we are all in this thing together. All’s I ask, is that you work with me.
I have joy in my day, at different times. But I have also learned the hard way, I need time to myself, to just be me, if that means staying in my p.j.’s all day and not doing anything, then that is what I need. I, as a Caretaker, am really good at taking care of everyone else, but taking care of me? Nope, not so good at that. I’m not complaining, really I am not, I am just trying to explain to those around me, (and they read my blog), that maybe, I might need a little bit of extra care, or maybe even just a “Thank you” and some appreciation. Goodness, knows I appreciate all of y’all.
Sometimes, being a Caregiver is a hard thing, but sometimes, the Blessings outweigh the bad, and maybe I am just going through a rough patch right now, who knows.
Sometimes, I am so confused by the roller coaster of emotions that I go through on a daily basis, that my whole insides are overturned and then some. Some days are a giggle fest, other’s are a crying fest. This is the hardest thing I’ve ever done, and yes, while I am learning a bunch, I hurt a bunch too. I’m trying my best not to be a wimp, and maybe my reflex is to be mean, that’s not right either.
Someone told me the following: “Sometimes, the hardest lessons hurt the most…” True. And they often teach the most.
I’m learning a bunch right now, but that doesn’t make any less painful……
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.
When I first entered it, I was hoping to get at least 100 votes. I truly want to spread the word of this Disease to people. Some of you have read my post “Something hit me hard”, because I was dealt a hand by Facebook, who rectified the situation.
Can I say, that after getting 627 votes (ok, some of those were from my family), I was totally blown away. By the support, and the people (and a bunch of friends, that let me in on some secrets). It seems to me, that there are a number of people, that I know, who are affected with this Disease in one way or another, that I never knew about.
So, I guess I may have raised some awareness, at least I hope I have helped to let people know, there are many that suffer from this Disease.
Let me also say, that ending the contest as number 10, isn’t shabby either. But the only reason I was able to end up in that spot, was because of all those that voted, sometimes as many times as 6 times in one day.
So from me to you, THANK YOU, FROM THE BOTTOM OF MY HEART!
I may be 6 days late in advising that this month is dedicated to Parkinson’s Awareness. But…better late than never.
I have plans for this month, to try to bring awareness of this disease to my Community, and anyone and everyone that will listen.
I am a Caregiver to my Momma who is in Stage 5 Parkinson’s, I have watched the progression of this disease for about 10 years now. At times, we were never sure what “Stage” Momma was in, We are very clear now, though what stage she is in.
The funniest thing about this disease, is it, does not affect every person the same. There is no manuscript or instruction manual on how to proceed. Most times, we fly by the seat of our pants, especially at this stage.
I have talked with many different people about the disease. Most people, who have never dealt with it, and are under the “assumption” that is just “tremors” of the body. It is so much more than that. Parkinson’s disease is a degenerative disorder with no known cure.
Parkinson’s disease is the second most common neurodegenerative disorder and the most common movement disorder. It is characterized by progressive loss of muscle control, which leads to trembling of the limbs and head while at rest, stiffness, slowness, and impaired balance. As symptoms worsen, it may become difficult to walk, talk, and complete simple tasks.
The progression of Parkinson’s disease and the degree of impairment vary from individual to individual. Many people with Parkinson’s disease live long productive lives, whereas others become disabled much more quickly. Premature death is usually due to complications such as falling-related injuries or pneumonia.
In the United States, about 1 million people are affected by Parkinson’s disease and worldwide about 5 million. Most individuals who develop Parkinson’s disease are 60 years of age or older. Parkinson’s disease occurs in approximately 1% of individuals aged 60 years and in about 4% of those aged 80 years. Since overall life expectancy is rising, the number of individuals with Parkinson’s disease will increase in the future. Adult-onset Parkinson’s disease is most common, but early onset Parkinson’s disease (onset between 21-40 years), and juvenile-onset Parkinson’s disease (onset before age 21) also exist.
What causes Parkinson’s disease?
A substance called dopamine acts as a messenger between two brain areas – the substantia nigra and the corpus striatum – to produce smooth, controlled movements. Most of the movement-related symptoms of Parkinson’s disease are caused by a lack of dopamine due to the loss of dopamine-producing cells in the substantia nigra. When the amount of dopamine is too low, communication between the substantia nigra and corpus striatum becomes ineffective, and movement becomes impaired; the greater the loss of dopamine, the worse the movement-related symptoms. Other cells in the brain also degenerate to some degree and may contribute to non-movement related symptoms of Parkinson’s disease.
Although it is well-known that lack of dopamine causes the motor symptoms of Parkinson’s disease, it is not clear why the dopamine-producing brain cells deteriorate. Genetic and pathological studies have revealed that various dysfunctional cellular processes, inflammation, and stress can all contribute to cell damage. In addition, abnormal clumps called Lewy bodies, which contain the protein alpha-synuclein, are found in many brain cells of individuals with Parkinson’s disease. The function of these clumps in regards to Parkinson’s disease is not understood. In general, scientists suspect that dopamine loss is due to a combination of genetic and environmental factors.
There is also something called Parkinson’s Dementia, which is a whole other ball game.
Early in the course of Parkinson’s disease dementia, mental slowing is
seen. Another sign (In medicine a sign is what a physician finds by examining
a patient. )For example, a patient with the symptom of pain might have signs of a
fast heart rate, a pale face, a clammy touch and tenderness. is
mental inflexibility. Compared to people with Alzheimer’s disease, those with
Parkinson’s disease dementia have somewhat worse visuospatial function, although
at the early stages, this is usually demonstrated better by formal testing (such
as the clock drawing task) than is seen in everyday life. Hallucinations are
often seen in Parkinson’s disease dementia. The hallucinations typically consist
of seeing things that are not there. In Alzheimer’s disease, hallucinations
generally occur late (e.g. in the severe stage), but in Parkinson’s Disease
dementia, they usually occur early (when the dementia is in the mild stage. )
In fact, in Parkinson’s disease dementia, hallucinations can be an
early sign of dementia. Even when seen as a reaction to too much dopamine, they
can be a sign of dementia to follow later.
Symptoms that are more specific for Parkinson’s Disease dementia are a mild memory impairment that at first responds to hints and cues. just as in Lewy Body dementia, patients with Parkinson’s Disease dementia can show large changes in attention and alertness from day-to-day (one day they are able to hold conversation, next day the cannot). Other manifestations of fluctuation in symptoms are episodes of staring blankly, especially if occurs to such an extent that you find
yourself touching or even shaking the person you care for so that they will
“snap out of it”. Daytime sleepiness can be another sign of fluctuation.
Sometimes, for reasons that are not clear, the fluctuation in alertness can be
made better by making changes to medications that smooth out the level of
Parkinson’s Disease dementia is a progressive Progression
A disease that is increasing in severity; going from bad to worse over time. disorder that has an average length of several years from the beginning of symptoms. The cause of Parkinson’s disease dementia is still unknown, but it is thought
that there are many genes which contribute to the development, including some
that are also thought to cause Alzheimer’s disease.
In the course of the 10 years, I have dealt with this disease, I have done a BUNCH of research on the subject. If only to find a way that will make the Road Momma is travelling easier for her. It is not an easy road to travel, and my heart goes out to other Caregiver’s that are dealing with this disease.
If I can get the word out and help at least one other person who has questions, then I feel good. If my experience on this road helps someone else on the journey they are on, then I am not on the road by myself.
I do have to say, I have found friends through my blog, and we have helped each other, y’all know who you are, and I thank you, for making my road easier to travel, because I have found I am not alone.
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……..
I read an article in a magazine last month, and I was truly engrossed. As a Caregiver to Momma, I am all about finding out tips, or suggestions, from other’s that also occupy “my sort of world”. The article was very informative, with the exception, the article was written for an Alzheimer’s Caregiver.
Momma does not have Alzheimer’s, although I am familiar with that disease too. My Cousin/Aunt Kay had it, and it wasn’t pretty either. It seems to me that there are a lot of Diseases out there, and they are given a lot of time in the news, or front-runner of charities.
Momma has Parkinson’s. (I know you all know this, but go with me on my train of thought for the moment). While I acknowledge that Alzheimer’s is a very nasty thing, I would like to add that Parkinson’s rates right up there too.
But again, I digress, and I am famous for that. My mind is going so fast that I am having a hard time keeping up with what I originally started out to say. That happens to me sometimes.
The article that I read, gave some idea’s on how Caregiver’s could retain their well-being. It’s hard to be a Caregiver, especially if you are a Caregiver to a member of your family. There are so many dynamics that enter into the picture. You hurt just not for the person going through it, but also for all of the family members going through it with the person. Be it, Mother, Father, sister, brother, or you, the person that has it.
I am a unique person and I acknowledge this (I am not patting myself on the back here, I am letting you into my world). When I look at Momma, and I know momma. I see what she see’s. I put myself into her shoes, and I realize to an extent how it feels.
I would not like the fact, that I am no longer able to any thing by myself. I am at every one’s mercy for my well-being. I used to be able to get up by myself and go to the restroom and wipe my own butt, I could give myself a bath, I could dress myself, and walk by myself into the other room. I could grab my car keys and drive myself anywhere. I could form a sentence and carry on a conversation with anyone. I did not see things that are not there, I was able to carry on and eat anything I wanted. But now? Now I am reduced to not being able to do anything myself. I cannot even roll over in bed by myself. I am fed by a tube, and I so crave a simple piece of pepperoni pizza. I’m scared of the night-time, and I don’t like the dark. I have so many thoughts going on in my head, and I cannot make my mouth say them. Sometimes, I get the words out and I let my husband and daughter know how much I love them, but my mind is clouded and I cannot form my words. I choke on my own spit, and get scared. I had so many dreams of when I got older, this was not one of them.
These are some of the thoughts in my head, when I put myself into Momma’s shoes. I’ve talked to Momma, and these things are true. While Caregiver Beth and the Farmer, get some good things, Momma shares with me her innermost thoughts at times. I’ve carried this inside me for so long, that I am erupting in emotions about now.
I guess, as the Daughter of a Momma with Parkinson’s it is important for me to know these things. I only have my Momma’s best interests at heart. While I cannot easily say this does not hurt, because it does, maybe, it is something I was meant to do. Simply because of events in my life have led me to this point.
With all of the above being said, my true reason for writing this post was to put into motion that Caregivers, need Caregivers as well. There are times when I am so low that I cannot even see daylight. When I feel that the burden is too much for me to bear. But you know what? There is daylight, and there are great memories, and it is what it is. I am a very lucky girl. I have a family that loves me, and will not let me do this by myself. I have a wealth of Caregivers, who give me care. From the Electrician, who supports me and lets me do this, even while we may not have enough money that we need, to my kids, who just call me to say what’s up, to my friends I’ve met through my blogging world who keep tabs on me.
Life is a journey, embrace every moment, enjoy everything, tell each and every person that you Love, you love them. And at the end of the day, know that you have given your all. Sometimes life throws us some curve balls, just be ready to catch them, and above all, believe in your heart, and go with it.
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…..
Okay, I’ll admit it, I usually try to bluster through everything, and try to get things right without reading the instructions. Do you know what I am talking about? You buy something new, and put it together and end up with 4 extra screws, and sit there scratching your head, wondering where they go.
Unfortunately in life, there are no instructions. So, you sit there scratching your head and wonder where are the instructions. I think if you have a Disease, it should come with instructions. Forgive me for a few minutes, but I have been totally flummoxed by Parkinson’s.
When Momma was diagnosed 8 years ago, with the Disease, it was a very slow progression. About a year and a half ago, I quit my job, because the progression seemed to be moving a little bit faster, and the Farmer needed my help.
When I quit my job, I did every known research, and I mean hours of sitting at the computer reading anything and everything I could find. I talked to Doctor friends, and Nurse friends and Caregiver friends.
When Momma went downhill fast, I got scared, but slowly over the past year we have reached something that is called the “Plateau” stage. Me? I call it the “status quo” stage.
The only thing I have noticed lately are small things. Momma seems to be more confused lately, which is attributed to PDD (Parkinson’s Disease Dementia). Momma talks to a bunch of folks who are Dead, and expects me to answer them when they are talking to me.
I have noticed Momma seems to be a little bit weaker than normal. I will say, My Momma is a fighter and refuses to give up. Sometimes, she seems so strong, and at other’s, I think a little wisp of wind would blow her over.
I will say though, some of the “other things” that are happening I am not a fan of. (I’m about to be graphic here so shield your eyes), in the past 2 days, I have been pee’d on, (it was an accident and Momma was really sorry), today, when Momma was passing gas, well, it wasn’t just gas, and DAMN….I have figured out that from now on, I will wear my hair UP in a pony tail or a bun or something, I will wear gloves AT ALL TIMES, just because.
I never knew how hard it would be to be a Caregiver. I never understood how hard it was to balance everything in my life and still be okay at the same time. I think I have learned something about myself in this process. I have learned that I will try to take care of everyone else, sometimes at the expense of myself. The Farmer asked me recently, “Why are you sick all of the time?”. I think it may be NOT just because I smoke, but also, because I am to worried about taking care of everyone else instead of me.
I have noticed a trend, so to speak, some of my friends that are Caregivers, do the same thing. We tend to “take Care of” others, at the expense of ourselves. I guess, I am starting to understand, that I cannot take care of someone else if I cannot take care of myself. Does that make sense?
That’s why I need an instruction manual. I might even read it…..