My world is turned upside down a little. So, before I get into what turned it upside down, I need to ask a question. This question actually came from Momma, who has had Parkinson’s Disease for 9 years now.
There was a “news story” on the 5:30 “National News” . It was a story about a woman who had done extensive research on Alzheimer’s Disease, and had found a possible cure, or at least a drug that would help, only to be diagnosed with Alzheimer’s.
I’ve spent the better part of this evening (after I got home from the Farmer’s, Hey it’s Wednesday and y’all know he has a regular Wednesday night “out”.) I’ve researched on the internet, and ya know what?
Alzheimer’s Disease is widely known, and researched, but ya know what? Parkinson’s is not. Sure, Michael J. Fox, brought Parkinson’s into the news, because he suffers from it. He started a Foundation, that has tried to bring awareness of it.
I must insert a disclaimer here, because this is solely my opinion and everyone has them.
Momma asked me tonite, “Why doesn’t everyone know about Parkinson’s? I know a lot of people have it, but it is not on the 5:30 News tonite?”
So, my question is this, Why doesn’t everyone know about Parkinson’s Disease? I have found that since I started my blog, and also contact with people I knew in my “working world”, There are a lot of people out there that either have it, have dealt with it, or are living with it, be it a Caregiver, a spouse, a family member, or whatever.
After Momma had asked me this question, she went straight up Parkinson’s on me and Joyce. This was probably the worst I have ever seen her. Mind you, I usually get her up in the morning, and then hang with her until about 2 pm. Last night she was fine. Tonite not so much.
I really don’t know what triggered this, other than the news story at 5:30, because folks, she was fine up until that point. You see, that’s the thing. Sometimes, she’s just like you and me and then WHAMMO, she goes straight up Park’s and there is no coming back.
Between Joyce and I, we finally got her in the bed, (the Farmer came home early and he helped to). We got her pants changed, and then tucked up, but by then, (I hope Momma was in her happy place in her mind), because the rest of her sure did not co-operate, and then she told the Farmer that Joyce and I were torturing her.
I tried to explain, we were not torturing her, but she was having none of my conversation at that point. So I did the only thing I could, I gave her a kiss and a hug, (which she gave back to me, damn, she’s strong sometimes). I told her, “I’ll be here in the morning to drag you out of bed ok?” she replied “I love you Joanne”.
The Farmer and I talked for a bit before I left, and HEY Farmer, I counted 12 before I hit my driveway, pfft….you really need to quit jinxing me ok?
I’m sorry if this post is all over the map, but ya know what? I’m all over the map too. The brave Camsgranny posted last night she’s not scared of nothing, but guess what, I think I am.
Well, here it is at o’ dark thirty and I am finally home. The Farmer jinxed me though. After coming home from his night with the guys, which was celebrated about 4 towns over, and HE drove the back way home. He came in the back door and caught me napping on the couch. I got up and gave Momma and the Farmer a kiss, and then was headed out the door, when he said “Made it all the way home without seeing one deer“. I stopped and asked him “Did you drive the back roads?” “Yup, and I didn’t see one deer.” Humph….
Me, the “Queen of the back roads”, went through town, with a little bit of the country roads thrown in, simply because even if I drive through town, I still have country roads.
Heck, I had no sooner left the Farmer’s driveway and I saw a friggin deer. I cautiously drove the miles into town, and made it through town before I saw the next one. Lucikly for me there was a car in front of me that scared it, but I saw him. Then on the home stretch to my house, (I seriously think they have it in for me), I saw a whole herd of the suckers coming out of the cornfields to get to the bean fields on the other side of the street.
So, needless to say that a 45 minute drive, (because of going through town) turned into about an hour drive. But when I finally turned onto my road, and pulled into MY driveway, I seriously breathed “WHEW, I made it”.
My day with Momma went pretty well. She got her hair washed by Joyce and I, and we had lively conversations about EVERYTHING. Momma was in rare form this evening. We had a couple of stumbling blocks trying to get her to walk into her bedroom, but with a little coaxing, and A LOT of telling her to breathe, and let herself relax, we made it.
When she was all tucked into bed, and Joyce had left, I had given her last round of meds for the night, I told her to take a nap, so she could say “Hello” to the Farmer when he got home. She slept for about a half an hour and then woke up and asked where the party was.
She only woke up for about 20 minutes, but we crammed a lot into those 20 minutes. She giggled like a teenager, and then got a little confused, because she wasn’t a teenager. She took me on a roller coaster ride, and all’s I did was hung on. She finally went back to sleep, and I laid down on the couch.
That’s when the Farmer walked in.
I’m not sure what I feel right now. There is not a manual to read about how a Parkinson’s person acts. Because everyday is different, and every person is different. I’m not scared any more, I know that. I also know in my heart, that I can deal with anything with Momma. I think I may be a little sad, simply for the fact, Parkinson’s has robbed Momma, and I really don’t like it, but there is nothing I can do about it.
But what I can do, is make her feel loved, and let her know, she means something to us. So what, if she has problems putting a sentence together? So what if her limbs don’t move the way she wants them to? So what if she may be incontinent? So what if she can’t do the things she used to be able to do?
She is still a person. With Dignity. With Pride. With a sense of humor. With so much love that she gives.
That’s MY Momma.
The Day after the 4th of July in my house, was a little different. The Farmer was going to have a “night out” with the boys, so, I was going to go in the morning and get Momma up and then come back and put Momma to bed. But for the noon hour, I was coming home to “celebrate” “4th of July” with Nursing Student, Fisher dude, and 2 beautiful Grankids.
Seeing as how the Electrician had some errands to run in the morning while I was gone, it kinda worked out. Before I even left the house that morning, I grabbed the Crock-pot, and sliced some onions, threw them in and then a pork butt roast on top of them, a can of chipotle peppers in adobo sauce, 2 cups of chicken stock, turned that puppy on high, and let her rip.
By the time I got back to the house, after getting Momma up, and settled. I walked into the house to aroma of cooking pork. The Electrician was downstairs, and called out to me. Now for all of you that follow me, you know the dryer has been a source of well….it doesn’t frigging work even after the Electrician has replaced about every darn part in it. It’s a Summer dryer I think, as in Summertimes it works and summertimes it doesn’t. Well anyway, we found another and bought it at an auction, and we just had to go get it, and the Fisher dude was going to help.
But, the Electrician already had that puppy here and almost hooked up BIG THANKS to my Neighbor the” Pack rat” (who took our old one and helped get the new one) and I was in awe. I started a load of laundry just to see if the dryer worked, as soon as I hit wash on the washer, the kids showed up.
Brayden-boy and Cam-Man haven’t been to our house since before Cam broke his leg. Let’s just say we’ve seen both of them in between, but it’s more fun when they come here. When both boys enter our house, they scream at the top of their little lungs, PAPAW, PAW…. And then the silliness ensues.
We all hung out for a bit (as in the boys rough housed with Papa, and then we ate). Everyone picked a seat, and we had a feast. The Nursing Student brought some potato salad, and Baked beans with sausage, (uhm, side note, although I really THANK her for leaving us the leftovers, the Electrician not so much, he says they have an effect on me….whatever that means), BBQ pulled pork sammiches, watermelon, and cantaloupe and macaroni salad, and …I could keep going, but all’s I know is I was full…(burp). The babies took a nap, The Nursing Student and I decided to bake cookies, and left the guys downstairs.
I really wish I would have thought to take pics of her and I in the kitchen, simply for the fact, we cook alike, we spread stuff all OVER, and it needs a cleaning crew to come in after us.
While we were making the cookie dough, we heard a “thud” and then some crying… Apparently Mr. Cam-Man has now figured out how to get out of his playpen (his bed here), and hit the dirt hard. The Nursing student and I went in after we heard the thud and crying and sure enough, little man was sitting on the floor. We sent him downstairs with the Men, and he promptly went to sleep.
The Nursing Student and I finished up the cookies, and came downstairs. We all hung out for a bit and chatted. Then it was time for me to go, I went back to the Farmer’s and hung out with Momma and Joyce. We had a good time talking. Momma was getting tired and we put her to bed (Well, Joyce put her to bed, I gave meds and held hands for a bit).
I guess the Farmer was going for the gusto, because he was a little bit later than I thought he would be. When I got home, the Electrician was already in bed, I had called him when I left the Farmer’s and he was tired after our day, apparently after I left, the kids, stayed around for extra Papa time with the boys, and Papaw was tired.
I had a good day after…..Although to be truthful, I was kinda tired…..
Ok, I have to confess, I have spent most of the day re-reading my posts on this blog since I started it. Wow, we’ve gone through some $hit….
From that dark day in December to where we are now? Who would have believed the progress Momma made just so she could come home?
When she first got home, she was scared and didn’t want to be there, until after the first 2 days. Now, I truly believe Momma would not want to be anywhere else. The Nursing student has also mentioned how much better care, and better Momma is since she has been home.
Face it folks, Parkinson’s sucks, there is no other way to put it. BUT, every situation is different and what the Farmer and I do with Momma at home is not always the right choice for someone else.
The Farmer and I have each other. (Plus the rest of my family who are all there to help if they can). We also have people who come in and help us. Joyce is one of Momma’s other caregivers. I don’t know what we would do without her. I really like Joyce, she comes every night to put Momma to bed.
Joyce and I have a routine on Wednesday nights, when the Farmer leaves and does his thing with the guys. Wednesday’s are when Momma get’s her hair washed, and then I blow dry it. Joyce put a lot of thought into the process we did it and managed to come up with a better way that would be less stressful on Momma. Joyce and Momma are good friends, and Momma jokes with Joyce, but is serious when she tells her she loves her and thanks her for taking care of her.
I’ve gone through all of the emotions today, I’ve laughed, I’ve cried, and I’ve remembered about everything I’ve written. This journey I’m on, is one hell of a ride. From good times to bad times. But I think I really needed to go back and see where we were, because then I can appreciate where we are today.
To that couple of weeks in December where we almost lost Momma, to where she is today. Yes, she gets cranky when we get her out of bed, and yes, her muscles don’t always work, but she talks everyday, sometimes silly stuff, but she is talking.
I have a lot to be thankful for, and believe me when I say this, the past few days may have been rough, but they are nothing like those past dark days.
A lot of things have been going on lately around my homestead. There’s been some changes, and some switch up’s. Last week, Joyce (one of the other Caregiver’s for Momma), asked me for a favor, if I would switch up, with her.
You see, I usually get Momma up in the morning, and give her the meds, and bath and get her ready for the day. I spend in general about 4-5 hours there and leave mid-day. Then, the Farmer cares for Momma and Joyce comes in the evening to get Momma ready for bed, and then put her down for the night.
Joyce asked me if I would swap a couple of day’s with her, so the past few days I’ve been given the luxury of sleeping in, doing my thing around my own home, and then going at night to do my thing with Momma. (On a side note, this has helped me because I have that “sinus fungus crapola”). (On ANOTHER side note, the Farmer has gleefully told me the past few nights that I look like $hit, uhmm….THANKS DAD!)
But I digress, Last night when I went over there, I set up the Farmer’s dinner for him (he’s missed out on the breakfast and lunch that I usually make him). I breezed in and talked to Momma, who has been in delightfully good form the past few nights. I remarked how bright-eyed and bushy-tailed she looked. But then, I started making her do some therapy exercises. She participated completely with me, and even did some on her own.
The evening went extremely well, and I tucked her up in bed, gave her the last round of meds, and kissed her and told her I would see her tomorrow (last night).
Tonight, I showed up, gave Momma a hug, and she gave me the “look”. She looked at me and said “Are we going to do exercises now?” “Uhm, yup, we are Momma get busy ok?”
I left her and finished up the laundry, the Farmer already had his dinner picked out and it was “Beef Stew in Wine” that is a “ready meal” from Wal-Mart. It doesn’t hold a candle to my home-made Beef Bourginon, but it’s close enough for him to like.
I went in and Momma and I did some more exercises, and then Momma looked at me and said in a very normal voice “I think Joanne, you’ve become the therapy police”. Uhm….ok….I maybe the therapy police, but I’ve noticed one thing. When Momma has and participates in therapy, she moves a lot better, and stays cognizant longer and better.
When it was time to put Momma to bed, the Farmer was a little wobbly (Sorry Dad, I’m busting you out.) hehehe, The Farmer decided to have a small bottle of wine with his meal. I think it was because I was there and he knew I could handle Momma.
Momma had no problems, the Farmer…..well he might have wobbled more than Momma did. I got Momma ready for bed, and put her into bed. I turned her so that she would not lay straight on her back, propped her all up and then rubbed her feet, which she had said felt like “pins and needles”. I gave her a kiss and tucked her all in.
Momma told me tonite, that she loved me and appreciated that I am fighting for her, and with her. I asked her a question though…..
“Am I really the therapy police?” her reply….
“Yes, you are and I appreciate you making me work, I’ve missed you getting me up, but I like you tucking me in.”
How do you deal with that?
Well…here it is 11:57 PM, and I’ve been home for about a half an hour. Today, I went over to the Farmer’s house at about noon, so he could take off for one of his big days of the year. (But that’s another post.)
So, I spent the day with Momma. ( Thanks to the Electrician for parting with his beloved for the day and night.) Momma was in rare form when I got there. She was happy to see me because I’ve been telling her all week, Saturday was going to be “Spa Day”.
So, after starting the first of what would be many loads of laundry, I came back upstairs and got out the foot bath thingy, that they have. I stripped Momma’s feet of all socks, and plunged her happy feet into a bath, of warm bubbly water. There has been a marathon of “The Walton’s” on all day, so we watched an episode. Momma was kinda dozing with a smile on her face, until I grabbed one of her feet and went to work.
In Parkinson’s patients, sometimes their feet can twist and make walking very hard. Their toenails are kinda malformed as well. For Momma, it’s been a while since she’s had her toenails clipped, and my work was cut out for me. After accomplishing that, Momma got a foot massage, and all lotioned up. Onto the next one. I guess she enjoys having her feet rubbed because by the time I was done with the second, Momma was snoring. I put her socks back on, but left her shoes off.
Round 2-3 of laundry. In between, I mopped the kitchen and bathroom floors, cleaned the kitchen counters, and put away another load of supplies that was delivered.
After giving Momma some more meds, I proceeded to give her a manicure, complete with the bubbly soak, but darn I forgot the nail polish, so she had a hand massage instead. Then she got a facial, which she truly enjoyed.
I took a little break from spa day, because the next step I would need assistance for, and I had to wait until Joyce (who puts Momma to bed every night and get’s her up on the weekends) arrived.
I went into Momma’s room and hung some pictures, and did a little bit more organizing, and got everything looking spiffy. So, then I went into the kitchen and whipped up a bacon, asparagus, swiss cheese Quiche, for the Farmer’s breakfast for tomorrow. Although, I did eat a piece and gave Joyce some too.
Joyce arrived and I explained my plan to her, and she was game. So, we got Momma up and walking around and went into the kitchen. Let me back track here for a minute, I used to wash Momma’s hair twice a week at the kitchen sink. The Farmer even installed a new nozzle to make it easier for both of us. Since Momma has been home, I’ve only been able to wash her hair with the “No Rinse” stuff, and that leaves a build-up. So, we got Momma to the kitchen sink, explained what we wanted her to do, and she did it.
Although, I do have to say, my nice clean kitchen floor got a little messed up, AND we had to change Momma’s clothes at the end of it. But, Momma was a trooper. She stood for about 20 minutes while she got her head scrubbed. We had positioned Momma’s walker behind her so that when we were done she could sit on her walker. (She has a fancy one with a seat on it). She sat down on the walker with her hair wrapped up in a towel and smiled.
Joyce and I wheeled her back to her chair where she stood up and walked in a circle so she could back into her chair, and then got her hair blow dried.
We all three sat and chatted for a bit, and then Joyce put Momma to bed. Joyce left smiling with her Quiche, although note to the Farmer, the porch light is burned out again. I went in and gave Momma her last round of meds, and then sat with her for about an hour, then told her to take a nap until the Farmer got home. She drifted off.
I went and finished up all of the laundry, cleaned the kitchen (again), spot mopped the floor. Then I made myself a cuppa, and sat down for a few minutes. The next thing I knew, the Farmer was walking in the back door. (I must have been asleep for about an hour). I gave him a progress report, listened about his “event”, then packed up my happy self and drove home.
When I got home, the Electrician had left the lights on for me, and I got a sniff over from Ms. Baby. Today, was a good one. Momma got her “Spa Day” and I had fun giving it to her.