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!
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.
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!!!!
I have spent the entire day in my p.j’s laying on the couch with a blanket. I have watched all kinds of Food Network, and some movies, and slept on and off all day. I have come to the conclusion, I am going to the walk-in Clinic on Monday.
I do not believe that green things should be coming out of my sinus’, and I have coughed myself silly and hoarse. If I had the energy, I might try using that netti pot thingy again, but I don’t feel like drowning myself this evening, and I’m a little scared about what might come out.
You would figure after a week, I would be feeling better. Uhm, nope. To top it off, I have given my sickness to the Electrician, who NEVER gets sick. But I guess with me coughing myself silly at night, and breathing on him, it was inevitable.
Plus, I simply have too much on my plate this week, to let myself be down and out. My outlaws are coming to visit and they should be here on Friday. That means, the Electrician is not going to rest until every little dust bunny has been found and killed, things dusted once, twice, and maybe even three times. Windows will be scrubbed, bathrooms will sparkle and carpets will be vacuumed to within an inch of there lives.
While you and I know they are coming to visit us and not give my house a white glove inspection, the Electrician feels the need to scrub everything. My thoughts? Let him.
I am excited to see my outlaws though, they have not been at my house in over a year, so they will get to see the “new” bathroom, and other stuff we’ve done.
But for now, I’m sorry, I am going back to the couch that is calling me, with my warm fuzzy Illini blanket, and probably take another nap.
While everyone else went to Parades, or just enjoyed a day off, I went to help with Momma.
When I arrived at the Farmer’s this morning (a little later than usual), he smiled at me. I told him, While most of the country is having a Holiday, it’s business as usual here. I went and made us both a cup of coffee, and we proceeded to chat for a bit and catch up. Our “new” Caretaker lady Beth, it was her first weekend, and she did marvelous. The Farmer was pleased, Momma liked her and things went smoothly. Me? I was impressed, simply for the fact, she had done a lot of different stuff, I had not asked her to do, and I did not have to spend my Monday putting everything back together the way it was originally.
Momma was happy to see me, this morning. She smiled at me and giggled when I got her up. I had her do some therapy first and she was all for it. The Farmer even remarked when he came in to help me get her onto her porta potty, that she was all smiles. After getting all of her business done, we proceeded to go into the front room.
We had already decided that we were going to wash Momma’s hair today in the sink, and not with one of those “capwashing” things. While yes, they do wash hair, they leave oils and stuff, which makes her itch and scratch all the more.
After letting her sleep for about 1/2 an hour, we got her roused, and she was ready. We put her into the wheelchair and got her into the kitchen, and she bounced out of that wheelchair and hung on to the counter with the Farmer spotting her, and me giving her that much-needed (and much enjoyed) head scrub. I think at one point she drifted off to sleep. When it was over, she sat back down into her wheelchair, and the Farmer wheeled her into the other room, and I blow dried her hair.I asked her if she wanted to get back into her chair, and she said “yes”.
I guess in hindsight I should have realized how much she had done prior to this, and maybe she was a little low on energy. We had a few problems getting her back into her chair. While the Farmer held onto her arms, I grabbed her from behind, and we would not let her go down. Momma learned to trust us today. When she was finally in her chair, she grabbed both of our hands and let us know, by squeezing, and telling us how much she loved us.
I let Momma sleep for about another hour, and then mean old me, made her get up again to sit on her porta potty. She handled it this time, so much better. I guess, sometimes, I forget, that she can’t just get up and walk like the rest of us. First of all it takes 2 of us to get her to stand up. Once she takes that first step though, she does good. Unless, her limbs are not co-operating with her, and that happens. You can always tell though, because she starts breathing funny, and her legs start shaking and the top half of her body just seems to shrivel up and topple over. The Farmer and I have a system though. To get her to stand is always on a 3 count, with both of us on each side of her holding her underneath her arms, backwards, she is facing forward. When she stands and makes the first step, the Farmer grabs the back of her pants, and I grab her hands and walk backwards directing her 4 wheeled walker.
I am so happy that the Caregiver’s that we have helping us, have learned this “system” and have adapted. Every person is different, and every person that has Parkinson’s is different. This is the system that works best for us.
It’s always hard for me, after not seeing Momma for a couple of days. Simply for the fact, that while the Farmer is there everyday no matter what, I see progression. He does not always see it, simply for the fact he deals with it everyday. Sometimes it scares me. Momma has a bunch of good days. But I have seen a progression with her. She now sleeps quite a bit. When she is awake, she is usually happy. I watched her sleeping today, and the expressions on her face, made me smile. She looked like she was having a conversation with someone in her sleep. Maybe she was, how do I know?
Looking back at this past week in retrospect. W O W. what a week I’ve had. I guess the Farmer and I are acknowledging things have changed.
The Farmer had an incident with Momma last night, and he handled it like a pro. But it did get me to thinking, especially when he told me he really did not sleep that well last night.
So, I went on a hunt in my house and I found, the baby monitor, we still had from when Cam-man was a baby, and we would lay him down for a nap.
It works, to be able to hear if at any time Momma has a hard time with choking, or whatnot. The Farmer is a light sleeper, so hopefully, this will help him to get a good nights sleep.
The road is a little rougher these days, but we are still travelling, and hanging on.
First let me say, I am doing two blog posts tonite, but this is the first one, simply because it means so much to me.
When I first started my blog, I felt a little vulnerable, and didn’t know what to expect. I started talking about my Momma who suffers from Parkinson’s and I thought I was the only one that was dealing with this. I told about what my day entailed, and gave y’all a part of my life through my eyes.
I’ve met a lot of people through my blog. But I have also met two very cherished people to me. The reason I say this, is because over the past week, these two people have reached out to me and became real, not people I converse with just online. But real live humans, with voices attached to the pictures.
To these two, and you know who you are. We are in this together, while Parkinson’s seriously sucks. While we are each learning something new and different, because all of our circumstances are different, we are on the same journey, but just travelling different paths.
But the best thing of all? We all are a support system, thank you both for being part of mine.
Have you ever had a day, when things go so right you are amazed? Yea, me neither. While I realize that I am in some kinda funk, or whatever, I’ve got to find a way out of it.
I will let y’all in on a little story. Since I usually get sinus infections, ALL the time, and this last one went up into my eye and well…let’s just say it was pretty ugly.
I was advised by several people (including my Mother-out-law), and a Doctor, to invest in something called a Neti-pot. It apparently is little tea-pot I shove up my nose and flush out all the bad stuff. You can pick them up at your local drug store, and yes, Wal-Mart does carry them with Saline solution you are supposed to use.
After researching on-line on how to use them I found this at About.com
A neti pot is a small ceramic or plastic pitcher. It has two openings, one at the top and another in the spout. It is filled with salt water to cleanse your nasal passages. A sinus wash is recommended as part of your daily personal hygiene regimen. Cleansing your sinuses in this manner relieves symptoms associated with colds, flu, sinus infections, nasal dryness, allergies, and other sinus irritations. It also helps reduce swelling of the nasal membranes.
Ok, sounds easy enough huh? I actually saw it being “tested” on The Rachael Ray Talk Show” just last week. Although, they did suggest using it in the shower.
Ok, I’ve had a semi ok day, although I guess it’s not a good sign, when the Farmer get’s a new book in the mail, and he reads me a quote before I am leaving his house.
“When you are at the end of your rope, tie a knot and hang on” by FDR (Roosevelt).
I believe it kind of resonated with both of us. When I left his house, I went to the Nursing student‘s to drop some stuff off, and the Fisher dude was outside. He and I chatted, and then I went inside, but the Nursing student was taking a nap, along with Cam-Man. So, I went back outside and talked to the Fisher dude for a bit. I told the quote to the Fisher dude, and I guess he kind of liked it.
By the time I had gotten home, he had posted it on his Facebook page, although he had altered it. When I saw it, I started laughing, and then proceeded to ask him, if he knew where the quote came from. He replied with, “Your Dad huh?” After giggling for a few minutes, I told him, who actually quoted it.
But I digress. When I went into take my shower this evening, I decided to give this thing a try. I thought I had followed all the instructions clearly.
Obviously this thing is NOT made for ME, because I proceeded to think I was drowning, coughing, and just utterly not enjoying the experience. Maybe I wasn’t doing it right. So, I tried it again, all the while in my head, I’m singing “I’m a little teapot, short and stout, here is my handle, here is my spout, when you tip me over”, I GAG, COUGH, and then there is a flood of stuff that there is no description for.
Hey, maybe I do have the hang of this thing, let’s try it again. Nope, I dropped that sucker and started flapping around because I thought I was drowning.
Meanwhile, the Electrician is getting worried about the noise coming out of the bathroom, and comes in to check on me. Do you know how hard it is to recover from the drowning experience and look normal when someone shoves the shower curtain aside and peers their face in and asks “Are you ok?”. “Yea, it’s just hot in here”. He looked at me and then just shook his head and left.
THAT was my experience with the Neti pot, I may or may not get the hang of it, but next time I use it, I think I will pull the radio in the bathroom to cover the noise.