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!
Have you ever immersed yourself so totally into something that you have found you have gotten tunnel vision? That somehow, you have forgotten to look up and just breath? You have managed to wrap your entire life around something.
These are things I have thought about the past week. Don’t get me wrong, as I have the love and support of my family. But lately, I’ve been so enmeshed in Momma‘s, Parkinson’s and so dreading the next steps, that maybe I’ve seen things, that may or may not have been there.
I do have to quote the Nurse in one of our conversations this past week, “I’ve seen them be on death’s door and then recoup and live for 3-4 years more”. So, that lead me to some deep thinking, and also to an understanding, of myself.
Instead of always thinking the worst, I need to look at the positive. I guess I had one of those AHA moments this past week. Momma was bad…she was sick, and I scared myself silly when I went in to check on her one morning. She was so pale, and seemed to me to be just barely breathing, she was weak, and I got literally so scared. I called the Nurse and asked her to come check on Momma.
I guess in all of my research on Parkinson‘s, and while I don’t have it, I think I know a bunch about it. While I have researched until the sun has gone down and come back up again, the funny thing about this thing called Parkinson’s, is no one has the answers. It affects every person differently. Parkinson’s Dementia is also a another unknown in the medical clan, and research is improving, but still sketchy.
I made a decision this past weekend. As Momma passed her 69th Birthday (twice, because she did not remember celebrating her Birthday on her Birthday, we did it twice).
I have decided, that instead of looking for the end, I will cherish each moment I am given and when God calls Momma, then so be it. I am tired at looking at “signs”, because they get me all upset and torn up, for nothing. No one knows when someone will go “home”, and while all the “signs” can be there, Momma is like a rally squirrel. If she’s not ready, then I’m keeping her here.
Are we tired? Hell yes we are, the Farmer is tired, and I know this. But what happened between the Farmer and Momma today, made my heart swell. When I was getting Momma up, and I needed the Farmer’s help, and he came into the room, and told her how beautiful she was, and she asked who that “good looking man was”, I felt truly Blessed. The love they have for each other, even with this horrible disease, made me happy.
Parkinson’s affects every one differently. We have lived with it for a while. We’ve only dealt with the “bad” part of it for about 2 years. But when I look at everything, I try to place myself in her shoes, and try to feel how she feels. I can’t do it without totally feeling helpless. It’s not a good feeling. I can only help as much as I can, and try to make her days, better.
I know she loves me, she tells me everyday. We share so many giggles, even when she is not feeling her best. One spark in her day is her love for Cam-man, (who is my Grandson), they share a bunch, to who can go on the potty, instead of in their pants. To holding hands and giggling together. The young and the old…..there is so much to be said for that. I can’t even begin to tell you.
I don’t really even know where I am going with this post, but this is just an insight of my mind, going through some stuff.
Camsgranny is troubled…. She has had some awesome days with Cam-Man and momma. But today when she arrived home, and checked her e-mail and other stuff, She carried on. Nothing new here…..
I had just finished doing a warm-up meal ( food out of the fridge that was saved for day’s like this), when my phone rang, it was from one of my fellow bloggers, that I’ve known for about a year.
Her journey is similar to mine to an extent. While I care for Momma, she cares for her brother….It broke my heart, at what she told me. The desperation in her voice, hurt me. While I tried to give her comfort, I knew in my heart what the new, news means.
I can’t make it all better, I could not even try, the only thing I can give her is my experience over what I’ve dealt with. It does not even reach what she is dealing with.
It’s hard this road I travel. I don’t just deal with Momma, I deal with other people and their journey too. Maybe I am to empathetic over not only my own struggles but other people’s as well.
My Biggest concern today? And trust me it might change at any given time….BRING awareness into other people’s lives. I’ve had a good long time to get prepared for what Parkinson’s will bring us, other people might not.
The biggest thing? Parkinson‘s will attack you and take from you what you are not willing to give. Us? The Caretaker‘s of our family members….we sit back and try to make the person affected with this nasty disease, feel comfortable and do the best with what we know. But…we don’t know a lot…..
While Parkinson’s might not affect you, it does affect a bunch more people than you would like to think, Let’s be there for them?
I typed this last night, and I saved it, obviously for a reason…. Sometimes, I type out my story on this keyboard, just to let my emotions out. It’s been my saving grace so to speak.
I’m worried tonite folks…Momma is battling a cold which could turn into pneumonia at any time. That is one of the front-runners of killing a parks person. My beloved Nurse, came over today to “check” Momma out, the prognosis was good at this moment. I think we all fear the same thing.
But the fear itself is only selfishness on our part, by wanting to keep our loved one’s here. At what price? I probably should not post this, simply for the fact, I’m open and my heart is ready to be tromped….Please let us dodge this bullet for the time being, because honestly….I’m not ready to let go….
I was not going to post this, I have been working on it all week. I used to post on my blog everyday. It helped me to release some of the feelings I have. But I have found recently, with events changing, I can’t put out there what I used to. It is to personal for me. The Farmer reads my blog, and he is dealing with everything that I am, if not more.
I have found through my journey, and it’s not over, but I have become aware of a bunch of different things. I used to sail through life, not giving much attention to things, that didn’t really affect me. My eyes have been opened to so much, and I have felt more emotion in the past 3 years, than I could ever begin to describe. My journey has changed me as a person.
I think it has changed me for the better. I do not judge ANYONE anymore, I have learned it is not my place. I have also learned, compassion. I have also learned that Parkinson’s affects more people than even I realized, and if talking about it, helps one person, than I am helping. In some small way, I’ve helped.
Momma is ok today. The cold has not turned into pneumonia. The Nurse has helped me learn a bunch of new things, and if they help Momma, I’m all for it.
While I will tell you, I will try to post more often, I sometimes hesitate, simply because, it’s real, it’s emotional, and sometimes….it hurts to open yourself up that much.
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…..
Ok, this is not going to be another boring post about how sad I am, or how unsettled I am, or anything like that. This is a just a post warning others of some of “my” stuff.
How did I get here?
By car, I traveled some thousands of miles to move to the home State of the Farmer, so I could be close to him while going through a nasty divorce.
How did I get here?
I made a life for myself and my boys, and was scared the whole way through, but, had the love and support of the Farmer and Momma.
How did I get here?
I met a man, who was beyond my wildest dreams and fantasies who fulfilled my every wish.
How did I get here?
I made peace with my ex-husband, who I became really good friends with, since we were not married. However, he took back both of my boys.
How did I get here?
I married the man of my dreams, and we’ve lived and gone through some times, that would normally tear a couple apart.
How did I get here?
In the last 18 years, I can honestly say, through hard work and a bunch of love.
How did I get here?
Because, I will persevere: persevere verb Definition: to persist with something regardless of the obstacles, to be persistent.
How did I get here?
Because I can…..and will……
How did I get here?
I’m here, because this is the path I have chosen. It is not an easy path I travel. There are bumps, obstacles, and a bunch of other stuff in the way. But I am a warrior.
How did I get here?
By the Grace of God…..
Now, not all of you will agree with my theory, but I do believe and that is my choice.
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…..
Sometimes even the smallest things, can make you feel like a million dollars. Be it smiling at a stranger, to opening the door for an elderly person. To just taking time out of your busy day to show someone else a little kindness.
I will admit, lately, I’ve been feeling….I’m not quite sure. I’ve been snarky, and then been ok, and then been snarky again. I feel like I’m on a roller coaster. While I do know that some of this is, because of taking care of Momma, I think some of it is the stress over the Holidays.
Maybe, I am just missing something. I know the Electrician is frustrated with me. My philosophy of “the world is round and I’ll get there” has never really set well with him.
While I do not have a “paying” job, I still have a job. I am a Caretaker. I take care of my Momma, and the Farmer too, for that fact, I take care of home life for my beloved Electrician.
Someone left a “remark” about a week ago and it truly made me stop and think. While at first, I did not give it any attention, it did kinda stop me in my tracks. Someone stated that my “guilt” for not taking care of everyone in a true equal fashion , came through in my posts.
Now, while I admit, sometimes I spread myself thin, and I do try to take on my “world” so to speak, I give it my all. I don’t usually take time out for myself. I am to busy taking care of everyone else.
With all of that being said, I want to share something with y’all. This morning I got up early, so I could take care of some things around the homestead. When I was about ready to leave, I got a phone call.
The Nursing student called me and asked if I wanted to stop by her house and have a cup of coffee with her. Since I was all ready to go to the Farmer’s, I said yes, and I think I shocked her.
I grabbed a pint of pumpkin spice coffee creamer and headed over. I would just like to state for the record, I spent about 45 minutes at her house and I truly had such a fantastic time, that I hope I am invited back again.
We chatted and finalized our menu for the Christmas “get together”, that are planned. But I got, to just relax, and chat and be myself without having to take care of anyone, and just have a fun morning.
Mind you, I kind of paid for it in several different ways. But, I learned something this morning. It’s ok, to squeeze in sometime for myself, doing whatever it is I want to do.
My day kind of went to hell in a hand basket after this morning, but ya know what? It’s ok. Because sometimes to have the cream, you have to wade through all the $hit to get to it.
But I also figured out, sometimes, when people blow off steam, it is because they are troubled and while you might not understand it at first, say nothing, walk away and think about what is truly the underlying emotions. Because sometimes what you think is on the surface, isn’t what is truly going on.
Sometimes, the worlds problems and yours can be solved with a good cup of coffee, and good conversation.
**While I realize this post may be all over the map, at the moment I am truly all over the map..****
I have learned a few things about this thing called Parkinson’s. While I do not have it, My Momma does. When it first hit our house, it was mis-diagnosed for a few years. When it was finally decided that, Yes, Momma had it, we had no idea what to expect.
I remember researching on the Internet for any and all information I could find. I read about the 5 stages, but didn’t know how the progression would go. Well…. I can now say I know how the progression goes.
We have been in stage 5 for a while. I’ve seen things, and I’ve taken care of some things, I never in my life thought I could do. This is one of the hardest things I’ve ever done.
There are good days, and then there are bad days, and there are just days. I’ve seen my own emotions go from one end of the roller coaster to the other, all in the space of 10 minutes.
I do have to say, we do still have humor in our house. The Farmer and I discussed this aspect about 2 years ago, and we both sort of made a pact, that we would rather laugh than cry. The time for tears will be upon us, but until that day, we will find something to giggle about.
I think in this aspect, we are kind of following Momma’s lead, simply because even though her body is tortured by Parkinson’s, her mind is a little mushy, and Parkinson’s dementia is at us at every turn, we still can have a giggle.
This morning, I went over and snuck into the house early, so the Farmer could sleep in. When I went into Momma’s room her eyes were open, and she just kind of looked at me. I wasn’t sure she knew who I was. I listened to her tummy bubble on the stethoscope, I took her temperature, and then gave her meds, and a feeding. When I was done, she grabbed my hand and looked me straight into my eyes and said “Am I dead?” “Uhm, no Momma you are not, why do you think so?”. To which she replied “Well, I was just wondering because I had some visitors, and I KNOW they are dead”.
I got her to relax and she went back to sleep. She must have had more visitors later though, because I heard her shout and then start laughing, I ran into her room, and she was asleep.
When it was time to get her up, she was all smiles, and giggles, and telling both the Farmer and I how much she loved us, and wanted hugs. When she got out to her chair in the front room, she looked at me and asked me, “So, we need to go out for lunch or dinner I think, I really want a pizza”. Rather than go through the long explanation of how she can no longer eat, I just agreed with her and told her maybe later on this week.
Sometimes, it’s hard to find that giggle, sometimes, it would be easier to cry. But I refuse. Sometimes, the mourning phase hits before it is even time. You mourn the person they used to be, and see instead what Parkinson’s has done to the person.
It hits everyone different, and everyone handles it differently. Sadly though, all of our stories are the same.
I’m sitting here at a blank screen, trying to figure out what I am going write about. I’ve had such a different day, that I really don’t know where to start.
I guess at the beginning. This morning at about 4:28 am, I was woke up by the Electrician moaning. I got up to see what was going on and I followed him into the bathroom, where he blinded me with the light, and kept moaning. I asked him what was wrong, and he said his sternum hurt whenever he pushed it. I told him to quit pushing it and come back to bed. He said that it hurt to breath and he was feeling a bunch of pain. So, I asked him if he wanted me to take him to the hospital, and he shut off the light, and again stated, it hurt when he pushed on it. To which I replied, AGAIN, quit pushing on it.
We went back to bed, and I ended up on the couch, because I couldn’t sleep now, and I didn’t want to disturb him. A couple of hours later, I woke up freezing and went in and climbed into bed, about the time the Electrician was waking up. I got quite the start when I looked at him, and he was laying with his arms crossed like he was in a coffin or something.
Flash forward a bit and I took him to the Urgent Care. Both of our eyes got worried when they ordered a EKG, and then a chest x-ray. But uhm, I kinda have to hang my head down a little low here. Apparently, the germs the College student and I breathed on the Electrician, made him get an upper respiratory infection, that strained a muscle when he was coughing his head off with me the other night. (UHM oops). So, armed with medication, I brought him home, and then went over to the Farmer’s.
Momma was sleeping peacefully, so I went in and got her bed stuff and her into dry things, and asked her if she wanted to get up, I got a sleepy, “nah, I think I want to be the Lady of the Manor and stay in bed for a while ok?”. Ok. The Farmer went out to finish mowing the yard, and I got busy and did some stuff around the house. I washed his dishes, because he made his own breakfast, because I was at the Urgent Care.
I was in the middle of bagging the trash all up, when we decided the Farmer should take his Toyota to the dealership to fix an issue with his car. I told the Farmer I would let Momma sleep until he got back, and away he went.
I went inside and finished the cleaning I was doing. I peaked in on Momma and she was softly snoring, so I let her sleep. When about 2:30 hit, Momma woke up and told me she was ready to get up. I thought about it for a bit, and figured a plan in my head.
I went ahead and gave her a bath, and had her up and on her toilet, when I told her, it was her and I. She looked at me intently, and said “What’s the plan?”. I told her, I wanted her to stand, I would clean her up, and then finish getting her dressed. She would then sit back down for a minute or two and then I wanted her to get up again and take 2 steps and I would have the wheelchair behind her, and then I would wheel her out into the front room, then she could stand again and back into the chair.
After telling her this plan, I swear, Momma’s eyes twinkled. She looked at me and the stated, “Well, we do make a good team, let’s do this ok?”. May I just say, WOW. Momma and I did it. We only had one moment, where I was seriously questioning myself, it wasn’t that Momma was going to fall or anything, but when I went to help her get out of the wheelchair, I realized I was on the wrong side of her to help. For some unknown reason, I have to be on her right side. I think that is because not only can I grab her under her arm, but I can also grab her by the seat of her pants (or in this case I used the gait belt). We got her sit all nice and comfy in her chair, and then went through the ritual of having a mouth swab, getting today’s paper in front of her and making her comfy.
Usually, Momma will go right back to sleep. Not today. I turned the channel to The Walton’s, and her and I watched an episode. She stayed awake, and finally the Farmer arrived back home. He was a little shocked first that Momma was up, second that she was awake, and thirdly, that she was happy.
I ended up leaving and coming home and baking a batch of cookies for the Electrician. Then made dinner, and now am relaxing. The Electrician is feeling better. I think he’s just all drugged up though.
Guess what kids, I’M BACK!!! The sickies are almost gone, and after doing absolutely nothing for 2 days except, sleeping, and eating, and sleeping and eating, staying in my p.j’s for 2 days (YES, I did take a shower). I FINALLY feel so much better. I guess that I had not realized, that I’ve been going non-stop for about 2 weeks now, and it finally hit me smack in the face. I needed some rest, and being able to sleep until 10 am and then take a 3-4 hour nap and then go to bed at 10 pm and sleep all night again until 9-10 am, take another 3-4 hour nap and then be in bed at 10 pm. Well, I guess I really needed it.
When I arrived at the Farmer’s he even remarked how much better I looked, and much better my voice sounded. I don’t mean to jinx myself, but I did not cough at all last night. WOOHOO!!!
Momma was happy to see me, and she giggled with me while I gave her a bath and got her up. I noticed her picture collage had fallen off the wall, so I need to fix that. I was looking at some of the pictures in it, and will take a picture to post it on my blog.
My morning went kinda fast, and I didn’t even realize it. I made the Farmer breakfast, and then made him a polka keilbasa, potato casserole for dinner, and then, did a little light cleaning. Beth does a really good job on the weekends.
Momma truly was a treasure today. She made me giggle. She gave me her famous Momma smile, and it was all good today.
After I left the Farmer’s house, I was tired, and really didn’t realize how fast I would tire out, so I came home and laid on the couch for about 30 minutes. The Electrician out did himself today, and I am ever so thankful for him. He repainted our bay window and hung up one of my outside plants. It’s a spider plant that he hung in my bay window, and folks, it looks good.
My house is getting ready for my outlaws this weekend, and I am really excited. It’s a little funny though, because the Farmer is maybe a bit jealous that he has to share his only daughter with the Electrician’s parents. But he should know in his heart, he’s the number one Dad in my life. But my outlaws come in a close second!….
Love ya Farmer!!!!