Hey y’all, for those that read my blog, I’m sorry if this first part is a no brainer.
My name is Joanne aka as Camsgranny, I am the daughter of a Parkinson’s patient. My Momma was diagnosed with Parkinson’s about 4-7 years ago, it is really unclear at the time, because she was mis-diagnosed several times.
So what is Parkinson’s? The official definition is it is a chronic and progressive movement disorder that involves the malfunction and death of vital nerve cells in the brain, called neurons. Some of these dying neurons produce dopamine, a chemical that sends messages to the part of the brain that controls movement and coordination. As Parkinson’s progresses, the amount of dopamine produced in the brain decreases, leaving a person unable to control movement normally.
Over the year’s I have done a lot of research on the topic, simply because I had no idea what the Farmer (My Dad) and I were looking at. Momma has gone through a progression of symptoms.
The Farmer and I are her main Caretakers. In recent events where things had gotten pretty bad and Momma was in ICU for about 1 1/2 weeks, and then sufficiently recovered to go to a Nursing home and she participated in TONS of therapy. Momma is now at home, and we have some people come in and assist us with her home life.
Through my blog I have met some other people who, while are not in MY shoes, they are in their own shoes. Spouses, Sons, and some really young people who have been diagnosed with this disease.
The biggest thing about this disease, is that it affects everyone differently. Parkinson’s Disease is a neurological disorder. The cause is not known. It is also not necessarily an inherited disease. Researchers have found that people with an affected first-degree relative, such as a parent or siblings, have a four to nine percent higher chance of developing PD, as compared to the general population.
How many people have Parkinson’s? To me the number is staggering. An estimated seven to 10 million people worldwide live with Parkinson’s. In the United States alone, as many as one million individuals live with PD, which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig’s disease. Approximately 60,000 Americans are diagnosed with Parkinson’s each year, and this number does not reflect the thousands of cases that go undetected. Incidence of Parkinson’s increase with age, but an estimated four percent of people are diagnosed before the age of 50. Statistics have also shown that men are slightly more likely to have Parkinson’s than women. (Someone forgot to send THAT memo to Momma).
Parkinson’s does not have a cure. It is mainly controlled with medication. Levodopa is the most widely prescribed medication, with often several other medications to manage the disease.
The symptoms vary from person to person, but there are four key motor symptoms. Tremors in the hands, arms, legs or jaw; muscle rigidity or stiffness of limbs and trunk; slowness of movement (bradykinesia); postural instability (impaired balance and coordination). (I’ve seen this one first hand). Other common symptoms may include pain; dementia or confusion, fatigue, sleep disturbances; depression; constipation; cognitive changes; fear or anxiety; and urinary problems.
The next question (at least to me) is Can people die from Parkinson’s? Parkinson’s is a progressive disorder, and although it is not considered to be a fatal disease, symptoms do worsen over time and make life difficult. People with Parkinson’s experience a significantly decreased quality of life and are often unable to perform daily life activities. (In our case, Momma is unable to get out of bed, nor perform bathing, getting dressed or walk without assistance. She is also no longer able to swallow, and has a feeding tube that was surgically put in her stomach for her to get a food supplement and also all of her medications. ) There is a progression of the disabling symptoms. People have died from Parkinson’s related complications, such a pneumonia.
While some may look at Momma’s circumstance and say that’s not a life, believe me, she has days that she will charm the socks off you, and is the life of the party. But we also have days where Parkinson’s grips her and it gets rough.
The Parkinson’s Quilt Project is the first global quilt project to focus the world’s attention on the nearly one million people in the US and seven to 10 million people worldwide living with Parkinson’s. The project aims to raise awareness of the impact that the disease has on people living with Parkinson’s – along with their families, caregivers and friends – and on our continued urgency to find a cure.
Over the past year, more than 600 people created quilt panels, each of which measures 2’ by 2’. Panels include photos, illustrations and items that express each quilter’s experience with PD.
After finding out that April is Parkinson’s Awareness month (ok, I may be a little late but someone forgot to send ME the memo). I am trying to raise awareness for this nasty disease. I’ve experienced it first hand, as the Caretaker of my Momma. Somedays are frustrating, some days are outstanding. It wears on you at times. Somedays you want to throw your hands in the air and say I give. But then you look at the person suffering from this disease, and you realize, if I feel like this, I can’t imagine how they feel. Momma has expressed her feelings to me, and sometimes it’s painful to remember these conversations. She is scared, terrified, frustrated, depressed, sad, mad. She has good days, and bad days. But then out of the blue, she comes around and it’s kinda like it was in the days pre-Parkinson’s, and we laugh and giggle and she’s full of piss and vinegar. But folks, that’s My Momma, and the Farmer and I are in this for the long haul.
Today is Wednesday folks! Hump day to some, and just plain ole wacky Wednesday to others. Me, I wasn’t sure what day it was today, because all of my days have melded into one another.
I woke up early and could not get back to sleep, so I got up and drank enormous amounts of coffee, played on Facebook, made the bed and hit the door early. i wanted to get up to the Hospital to see Momma. Today was her swallow test.
She failed, but that doesn’t matter because she will have a video one tomorrow. I scooted out of visiting Momma after about an hour.
I ran to Wal-Mart, and picked up some Diet Coke, and a few other things. I came home and worked on my “project” for the Electrician. Guess what….I finished my “present” to the Electrician today and I really hopes he likes it because it came from the heart. It’s wrapped and under the tree.
While I was home I got a call from the College Student…she’s off to spend to spend a couple of days with a friend before she comes home. We talked about Momma, and some other stuff, but she told me, “I haven’t even shopped for you and Dad yet, what do you want?” What do I want?
World peace, Momma to come home…uhm…whatever you want to give me, but I really, seriously cherish something that is made for me rather than something that is bought for me. Frame a picture for me and wrap it up. Something that you have spent time making means all the world to me. I don’t need something bought for me. Does that sound harsh?
Anyhoo….I went back up to the Hospital and spent some time with Momma. She looked so sad when I got there. Momma is on the mend and I think she misses her life before all of this, cuz her bottom lip was dragging on the floor and she was staring at the picture of her and the Farmer that I brought up. Also, clutching the Bear (the one that went on the QE II cruise with them), Now me personally I’ve never been on a cruise, (that’s gonna be another post for a different day).
Momma perked up when she saw me and said “You came back”…”well…duh..” We then proceeded to have quite the conversation (uhm it was LOUD and full of giggles), The Nurse came in to check on us well…okay we were LOUD. But Momma is on the mend.
The Admission Gal from the Rehab facility stopped by, if Momma passes her swallow test tomorrow, she is going into Rehab. (GOOD THING) and even IF she doesn’t pass, (she’s never been good at tests), she’s still going into rehab.
I talked to this gal from the Hawthorne Estates Rehab Center. She was a little shocked. Ok, I’m not good at tests either. I could not remember Momma’s maiden name, (I figured it out). She was shocked at Momma’s age, (because she is young) and the fact WE wanted her TO come home. ” This is just a phase” I told her….”Momma’s coming home” . I guess she was a little shocked at how strongly I said this, but ya know what….”MOMMA’S COMING HOME” Maybe not tomorrow, maybe not for a month or so, but by golly….MY MOMMA is coming home.
Momma has Caretaker’s, that would be me and the Farmer. I was really impressed when she told me that they would teach me and the Farmer “how” to take care of Momma. So….while Momma is going into Rehab…Me and the Farmer….we’re going to School.
For me…today has been a good day, I hope for the Farmer too, he went back and spent the evening with Momma, because he hated leaving her like he did. The Med’s had worn off and she had a death grip on the QEII bear. When he went back up to the ICU this evening, it was ALL good in the hood. I think tonite, they spent the night like they normally do, with the exception that Momma is in the Hospital and the Farmer had to go home.
Folk’s….there is a bond there, they have Love….and I think the best medicine for both of them is The Farmer and Momma together……at Home…. We are working on that.
Me….I Love them both and only want to help, and make sure THEY are happy together….
Today did not start out very well. I woke up early and had a wierd feeling, when the phone rang at 8 am, my stomach went into my throat. It was the Farmer, “Joanne” “uh yea”,”She’s back in ICU, she stopped breathing”…”Uhm I’m on my way”.
“Caring for an ill or elderly loved one requires a tremendous amount of physical, mental, emotional and spiritual energy” For the Farmer and I …check.
What are the Warning signs of Caregiver stress? Inability to concentrate, (uh huh?) Tension headaches….For Me… check (Farmer hasn’t said if he’s had any headaches lately).
What Can I do to reduce the Caregiver stress in my life? Keep a positive attitude…CHECK, Believe in yourself…CHECK, Accept there are events you cannot control….CHECK.
I found a Web-site where Parkinson’s Caregiver’s post, it broke the dam, and I have cried for about the last half hour. I have seen Momma in those posts, and I have realized that the Farmer and I are not alone, because some of those posts go back to 2006. The story is always the same, and it breaks my heart, because folks…we are there.
Something hit me in reading and I would like to share with you:
“People are like stained glass windows: They sparkle and shine when the sun’s out, but when darkness sets in, their true beauty is revealed only if there is light within” – Elizabeth Kubler-Ross.
My Momma is in that poor body, this I know, there are sparkles every now and then, I understand she’s tired, and scared and hell I don’t know what else.
I know that my family is hurting because we have been so close to my Mother who has ALWAYS taken GREAT care of us, and we know there’s nothing we can do to help. This disease will attack anyone at any time, and no one will be ready for it when it strikes. You will try to be strong in front of your loved one only to realize how weak you truly are.
I seriously do not want my Momma to suffer, and right now I am struggling, the woman I saw today was a shell, and I want so bad for Momma to come back. I want her to open her eyes and give me that “famous” Momma smile.
I told the Farmer, that I would not take nothing less than being positive. He seemed a little defeated to me, and I tried to make him feel better. I understand his pain, mine is the same. The Nursing Student stopped by, she cried. We all are feeling the pain. The College Student has called my house 2 times today, she’s worried too.
I know that Momma is on about 20 different prayer chains, and I know in my heart, that this quote was written for me at this time….
“I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much” – Mother Teresa
Well here it is Wacky Wednesday, and things are good peeps. Momma is out of ICU, FINALLY. She has been moved to the medical floor in the Hospital, and is on the mend. Although, tomorrow, she is going to be taking some tests that I imagine will not make her very happy.
The Farmer took me out to breakfast today, after we had been in to see Momma this morning. We were both feeling better since we knew Momma was doing well. The Farmer kinda talked to me and then looked at me with the “I’M Dad and you’re gonna listen to me” face. I guess he’s decided that I should NOT worry about him. In fact, it was a little conversation we had. “You really should not worry about me Joanne”, “Uhm Dad, you can’t tell me what to worry over and what not to, and If I feel the need to worry well….I guess there’s nothing you can do about it huh?” (typical defiant daughter response). To which he responded “I’m okay really”…”really?” “Yup” me…”well okay then”.
Don’t let that conversation fool you folks, I will still worry, but ya know why I worry? Because, he’s my Dad, she’s my Mom, and for some reason, I really, really like having them around.
My Grandma lived until she was 97 years old I believe, I learned a lot of stuff from Grandma. She was strict, and didn’t think twice about telling me off or spanking my butt when I needed it, and she always had a cookie or a hug for me when I needed it. She tought me how to eat at a table with FULL silverware, she tought me MANNERS, and alot of other things I thought I would never need. But you know what, I HAVE needed that knowledge.
I see alot of my Grandma in my Dad. (Oh to the Farmer, THAT’s a compliment because she was one of the finest women I’ve ever had the pleasure to have known AND be related to).
But for all you peeps, Momma’s on the mend, I will TRY not to worry about the Farmer, and today has been a good day.
Oh yea, one more thing, I told the Farmer that if Momma was still in the Hospital for Christmas, he was to come to my house for dinner. Do you know what he asked me? “I read your other post, does that mean I get the Banquet Turkey T.V. dinner?” ….Uhm…no Dad, you get the ham that I am making AND you don’t have to dishes ok?
Ok ya’ll , today is Tuesday…I’ve been used to “Long Tuesdays” for so long that I feel lost today. I’m not about to get on the “pity pot”, but I am feeling a little lost today. I’m frustrated at no change from Momma who is still in the ICU. I’m confused about how things are going, and I’m feeling lost about my loss of routine.
Routine…now that’s something I’m used to, when it changes, I get a little confused. I don’t know what to do with myself lately. Either I am running to the hospital, and to the Farmer’s, because I’m really worried about him, or I’m straight up at a loss.
I know this post is convoluted, but it’s kinda how I feel right now. I guess I never really thought each and every day about what I did, or do. I love the Farmer and Momma, and Cam-Man, and I spent alot of time taking care of all of them. Right now my world is upside-down, Cam-Man is being taken care of by his Momma because she is almost on Winter break from school, (although I did stop by her house today, because well….I’m the G’ma and I can, plus I miss the little bugger.) I go to the Hospital 2 times a day, and sometimes come out of the ICU crying because it hurts. Maybe because I don’t understand what’s going on with her, and hate to see her in that condition.
But, I guess when it is all said and done, I get scared because of the Farmer. You see, I’m worried about him, Although I may be 50-year-old woman, yer Daddy is ALWAYS yer Daddy, and when he gets scared, frustrated, and upset, well….you tend to follow. I’ve kept it together pretty good (according to the Electrician), but well…I lost it today, I went up to the ICU for the 2nd time today and Momma was sleeping and I didn’t want to wake her up, or disturb her, so I called the Farmer and I told him I was going home.
He told me he would go up there about 3:30pm and stay for a while. This got me thinking. While I, as the daughter, am having my feelings, he as the Husband of 30+ years is having his feelings. Then I pictured me and the electrician, and I lost it. I can’t put myself in his shoes, but I can understand it.
This leads me to something the Farmer taught me long ago, You learn something from every experience. I’m learning something very important to me, the Love of a Family. I’ve ALWAYS had the Farmer’s love, but now He and I have the love a family, My family. They are all here ready to help out in any way, be it from making us laugh a giggle, to giving us a hug when we need it.
Okay, kids, I’m all over the map with this one and tomorrow when I post I’ll be more together, but for right now, I’m going to bed with the Electrician hoping for a better day tomorrow.
This is a pic of the Farmer and Momma…they were going to meet their “Supper club”. It’s been a few months back. For all of you that read my posts, the past few days have been touch and go. Guess what….Momma is BACK!!!!!!
I went this morning with the Farmer to see Momma and well… it’s been the same the past few days, Momma was not Momma. I understand that she is ill, and that it’s serious. The Blood Pressure thing had us all flummoxed. We HAD to get it under control. Guess what? For today, it’s all good.
I made dinner for the Electrician and told him I had to go back to the Hospital (Momma is still in ICU), he said to me go, I’ll clean up. I got to the hospital and lo and behold the Farmer’s truck was there (up until now he’s been battling with the lingering effects of the flu and has not been up to driving, and I’ve been his taxi service, good thing he doesn’t mind riding with me….the Electrician doesn’t like MY driving). I went up and walked in and stated “Damn, it’s like a family re-union in here!” Momma smiled and giggled. FOLKS she smiled AND giggled.
Momma’s color is SOOOOOOO Much better AND she is speaking (something she has not done in the past 3 days). She has so much to say, but with the tube in her nose that goes down threw her throat her voice is a little gravely and hard to understand (well to anyone else, to me it’s music in my ears). Momma talked to the Nurse a bit, but she could not understand her, me and the Farmer were waiting in the hall (they had something they had to do), and the nurse came out and said “she’s talking but I don’t understand her” so I said “I’ll translate for her” (remember Momma is british and has an accent) So, I went in and asked Momma what she was saying….to which she replied….””tell her I like her outfit, but I’m the one with the problems…” Well….It was a compliment to the Nurse, and the Nurse promptly told Momma “Thank you, I really needed a compliment today”.
Altho Momma may not be feeling well, Momma is back to being Momma. If y’all don’t understand then I ask you to think about it. This is a woman who is riddled with Parkinson’s, but…she will give you a compliment even without knowing you, because she feels it is the right thing to do.
I can’t even begin to explain the HAPPY DANCE I did when the Farmer and I were in the hallway. Just at the fact I was surprised that he had driven himself there. (Love like that…uhmmm I Have it) At the fact that Momma is BACK… I don’t know….
The past 3 days have been hell. I’m sorry peeps, I’m not ready to let My Momma go, neither is the Farmer, to be truthful neither is Momma. Parkinson‘s is our way of life. Whatever it brings to us we will deal with it, but ya know what? Between the Farmer, the Electrician, ALL of our kids, Grandkids, and friends, and extended family, prayer chains, and otherwise Momma’s gonna make it. This I know. It isn’t going to be easy but WE will make it, together as family and also for the Love of a Woman who loves all of us, Unconditionally.