00Hey Ya’ll, howzitgoing? I have been gone from the blogosphere for awhile now. So many things have happened in my life, that it is truly a wonder. Gotten divorced and then remarried to the same man, once our “hurts” and “anger” had subsided. Gotten a job and “blossemed” so to speak. But I am still Momma’s daughter and living with Parkinsons.
Things have changed so much in my life, when I look at previous posts and I see the niavete’ and then the hope, I know I was a known knowing person. I feel so much older and wiser now. I cannot explain it and this is not a post, where I will bash parkinson’s Disease, although I want to, I won’t.
Momma got the word she had Parks about 15 years ago. All of the reading and researching could never bring me to the point I am at now. How did we get here? Parkinson’s is a mean disease. It brings loss of all control of a person, and also in our case, all loss of control of the mind, because Momma suffers from PDD, aka Parkinsons Disease Dementia . I tried my best to be her sole Caregiver for many years, until I got to the point that I lost myself, and pretty much all of my family. I was filled with a need to “cure” something that could not be cured. I also had tunnel vision. I guess that is because I am that type of person, when I do something, I give it my all, and forget everyone else. Although in this instance, I lost a bunch.
I have since regained a bunch, but I have never regained Momma. There is no cure and no it is at the point where it is so painful just to see what this Disease has done to a fun life loving person.
My Momma is my Hero. I have never seen first hand someone fight this hard . If you have never seen someone with this Disease, I hope you never do. My fine grand Momma is a very strict and proper English Lady. To see her reduced to what she is, is definatly heartbreaking on so many levels.
I started this post back in October…..I used to blog every night, when I could share what was in my world and thoughts. It became to hard for me to share my journey, simply bcause it was a seriously rough road. I kept so many things to myself, and not shared with anyone. I realized that I had to share them with someone or some “ones” or I would implode.
I married my Best friend again…..we got lost somewhere but luckily found each other again. I opened myself up and told what I was feeling deep inside me. This journey has tought me a bunch. I am not super woman, and I cannot do it all. Parkinson’s is a horrible disease, and there is no cure. I have learned to accept that and deal with it.
The thing I did not count on, was how much it would hurt at the end. I have braced myself, and “prepared” myself for the end. But there is no preparing for the hurt and loss I feel. Do not get me wrong here folks, please. I am happy that there is no more pain or suffereing, I am not happy about loosing my Momma. I have plenty of “good” memories, and I know she is with me. But I feel a hole in my heart right now.
I guess I just wanted ya’ll to know how my journey has ended. It has, and I am dealing with it the best that I can. For anyone with Parkinson’s my heart goes out to you, for families of Parkinson’s peeps, my heart goes out. This is truly a horrible disease and my hope is if not a cure then something to help, because I am truly a Parkinson’s patient daughter who has lived it, dealt with it, and truly hates it.
To My Momma:
Margaret Ann Burwash 4/17/44 – 11-24-14, I love you Momma, I have fought by your side, and I have been astonished, and amazed at your courage, and your will to fight. You did that with Grace, and honor, and courage. You fought a good fight, and the angels came to take you home, simply to end your pain and suffering. I will forever be your daughter, and the Farmer loves you with all his heart. You leave behind a legacy, we will keep your memory alive and well. You are and always will be my Momma, our hearts are forged together. I love you and Rest in Peace my Guardian Angel.
Hey y;all, I really have not dissappeared. I am still here. I have just been wrapped up in my own life and not able to blog about it.
Sometimes things happen that we have no explanation for, nor at the time can we understand it. Sometimes, we need to take a few steps back and re-evaluate what we are dealing with. Also what we can handle and we cannot handle.
I have learned some very hard lessons over the past few months. I have learned, I can have boundaries, I’ve learned that I am not a super woman, nor an extreme Caregiver.
I learned the hard way that while my heart was in the right place, I could not do what was expected of me. The worse Momma got, the bigger my heartache became, and I choose to turn into shut down mode for myself. I shut myself off from everything I held near and dear to me.
I became so consumed with Momma that I forgot about everyone else in my life. They have suffered and so have I. It took extreme measures for me to wake up. I will not go into detail, simply because it hit me hard.
I never expected to be in the role of Caregiver in the first place. I thought I could handle it…..Guess what? Nope. I harmed myself more than I knew. I have taken 4 months off and tried to find myself and what my priorities were. I have re-evaluated my whole life and struggled hard on a bunch of things.
Well kids I wrote this in January, it is now the middle of March and i am just getting round to posting it. I have lived a lifetime in the months I have been gone. I am now divorced, and still a Caregiver in a way.
Momma is still here, barely. We now have hospice which comes to visit, and we have 3 Caregivers that help with Momma. I can no longer do it and have since gotten a full-time job at some place else. I am still Momma’s legal guardian, and make decisions daily on her care.
I never thought my life would turn out this way, but ya know what? I have help, I believe in my faith and I guess I am where I am supposed to be.
It’s been awhile since I last posted, please forgive me. I have been dealing with a bunch of personal issues. Some of them I am learning and growing from, and some I am just dealing with.
My biggest news today, is I have accomplished something I never thought I would. I actually participated in a 5K. Yes, a marathon. Now those of you who have followed me for a while, know I am not a “sporty” type. But part of my “new” thing, when I quit being Momma‘s Caregiver was to try to find “myself” again.
I started working out, lost a few (10 at the moment) pounds, and just kind of focused on me and MY well-being. I have a wonderful Coach, (whoever said that daughter’s could not be your best friend when no one else will be was crazy).
This was us this morning at o’dark thirty. We really did not talk last night about what time we would need to get up to be there. Here is confession time. I am living with this wonderful girl and her family for the moment.
THAT is another story in itself which is a little to personal to talk about at the moment, but suffice to say, The Electrician and I are “working” on our relationship and it is what it is.
But, as I am famous for, I digress. The Nurse and I have been “training” for this for about a month now. We take nightly walks, she pushes Cam-man in his stroller and I let Bella the dog ‘pull’ me around.
We arrived a little late this morning, as i had an e-mail from my favorite cousin to meet her. Uhm…we were late, and arrived as the prayer was being said, so the Nurse and I were in the tail end of the ‘group”.
With a total of 670 people, I did not think we would ever find my cousin. Guess what? 5 minutes into it, we found my beloved cousin, and the Nurse got to meet her and we walked for a bit, with her group. Somewhere along the line though, The Nurse and I got up to our speed and started passing peeps like there was no tomorrow. I have never been in a marathon before, but “sis” and I have walked for an hour all over our little town and we were kicking some butt.
We got hit with some “fairy dust” and got us motivated. We walked all over the little town of Bismarck, Illinois, and we had a blast. But I do have to admit something. I had talked to my Mother in law a couple of days ago, and she has always wanted to participate in an event such as this, so I told “sis” and we talked about her Grandma on the way, so my MIL and her Grandma was with us. I called her this afternoon and told her about it, and she giggled.
This would be me and my most favorite cousin in the world. I love this woman. This woman was my pen pal for so many years, and actually flew to England for my graduation, There is nothing I would not do for her, I am proud to call her my bestest friend through the years. (Plus, she got my butt motivated to do this.)
But to be honest, my inspiration and my rock, to give true credit where it is due is the one, who did not like me very much 20 years ago, but who has turned out to be my best friend and daughter, although I can not take credit for her birth, I can take credit for some, but I love this girl like no other. While she has had to deal with a bunch of stuff, like taking in her step-mother in and sharing her home with me, Thank you to my Nurse, today was a blast.
We did it Sissy. Thank you! To the Moon and back…..and as Cam-Man says….GO BULLSEYE!!!!
I know I have been gone for a bit, but I have been trying new adventures, and trying to become myself again. I never understood, how totally immersed I was in being in the Parkinson’s world. I am learning how to be the “daughter” again instead of the “caregiver“.
My usual routine has dramatically changed, and I am becoming accustomed to just being able to do regular things. It is a little strange to me, and I’ve had some moments.
I’ve been spending ALOT of time with a little certain someone.
This little kid, rocks my world. He is so full of life, and asks a million and one questions, that he keeps me on my toes.
I took myself on a little retreat last weekend. I left town, armed with a swimsuit, and some clothes, and went about 2 hours away and checked into a hotel room. I did a bunch of reflecting, sleeping and swimming in the pool. My girlfriend and her family arrived the next day, so we had fun, walking all over the town and just goofing off. I came back from the weekend, with a new attitude, and a feeling of being relaxed and in control of my thoughts.
I do not feel as stressed and desperate as i did. I have done some things in the past few weeks, that I never thought I would do. I now walk/jog every evening, and am watching my diet (well, eating and watching what I eat, while I eat it.) I’ve gone on some adventures.
I actually went to the Circus, with little dude and his Momma. I do have to say, the last Circus I went to was in Russia, when I was 16, and while this was nothing compared to that, I found enjoyment in the awe on little dude’s face.
My days have been busy, and I have gone to visit with the Farmer and Momma. It is strange sometimes, to not take care of her, but we seem to have a bunch of conversations, and true joy now when we get together. I don’t get the anxiety, nor the desperation feeling. I do not leave the house in tears, I now leave the house laughing and enjoying the time.
For me? It is nice to go back to being the daughter of a Parkinson’s Momma, and not the Caregiver of a Parkinson’s Momma. It took the Farmer a little bit of time to understand this. While I may have been an excellent caregiver, the price was to high for me.
I am glad, I am slowly becoming me again. It is taking some time, but I am on my way back!
Until next time, take time to smell the flowers and laugh and giggle as much as you can. Oh yea, smile at a stranger, it might make their day, and you will feel better too!
I am a daughter of a Parkinson’s Momma. I am not a medically inclined person, in any way shape or form. I have been an Insurance Claims Adjuster for about 15 years, and then followed my true love of food, and been a waitress, chef, and manager of a restaurant for about 7 years. This was all before I gave it all up, because My Momma had Parkinson’s.
On a wild day, when the Farmer was a little over whelmed, I made the comment I could come and help him, and take care of Momma, and give my job up, but I had one problem. I had just bought a new car (well…new to me) and the Electrician while he makes good money, did not need to be saddled with bills I had incurred. The Farmer and I made an agreement, and so it was born. I would give up my job, (although to be totally truthful here, it was either be fired or quit, because I really do have an alligator mouth that over rides my rabbit ass.)
So, it came to be, I would be Momma’s Caregiver. At first, it was a walk in the park. Momma still had her facilities about her, and only needed help with maybe getting up and taking a bath, and maybe washing her hair. While the Farmer is my Dad, he was not as fastidious, not my Momma, about keeping things clean, so I busied my days with cleaning house and taking care of both of them.
The Electrician was on the road at the time, so time I spent with them, and was not giving up any time other than being by myself. The electrician came home on the weekends and the only thing he asked of me, was please, be home at that time. Piece of cake.
unfortunately for me, Momma had a really BAD spell, this was after the Electrician had finished his time on the road and was home. You see, I didn’t just take care of Momma, I took care of Cam-Man. I can remember this clearly in my head like it was yesterday. I picked up Cam-man, and his Momma had told me he didn’t feel good. The next thing I knew, I was down and out, so was the Farmer and Momma too. I recovered sorta, and went over to the Farmer’s. I puked at Momma’s state, and knew, we had to call an ambulance.
Momma spent 7 days in the ICU unit, and was released up to the fourth floor. Next thing I knew, I got a call and Momma had stopped breathing and I rushed to the Hospital, full of prayer, and crying the whole time. Momma survived that experience. I don’t think I have ever been so scared in my whole life.
Momma was accepted into a Nursing Home (Thanks to the Nurse, who worked there and spoke to the DON). Momma started therapy, so she could return home to us. She went through 4 months of therapy, and was finally released. She came home. The whole house was re-arranged to accommodate her new “life”.
With momma’s ‘new life” there were so many changes we had to make. We hired “Caregiver’s” simply because the Farmer and I could not handle it on our own.
THAT was almost 2 years ago. I have been Momma’s full time Caregiver, and also taken care of the Farmer too. It is with deep sorrow, that I can no longer do that.
To anyone reading this, for the first time. I ask you, Could you do that? I have been torn two sides of Sunday and then some in between.
I am me. I puke at the sign of snot, anyone who blows their nose in front of me, I will probably puke. Anyone who coughs up anything, I will puke. Blood? do not get me started….I was never inclined to be anything other than I am. I love food, and cooking. period.
The past few years, I have accepted and done what I thought a “good daughter” should. I have made family members suffer from my “absence”. I never thought it would affect me like it has. This is not about my family members, this is about me. period.
I’ve tried to explain to the Farmer and also the Electrician. I have had many conversations with many people, but at the end of the day, it comes right back to me.
Forgive me for being selfish at this point in my life. Don’t get me wrong in any way shape or form. There are people who are on this earth to go through what I’ve been through and they can do it. I’ve reached a point, where I cannot.
I had a very long conversation with someone who is special to me today. She answered some of the questions I had, I also had a very long conversation with a family member today, and she gave me the same answers.
I give……period. This is a painful journey, and I have to cry “I’m done” at this point. I can no longer give up the personal sacrifice, nor can I do what is expected of me at this point.
Have I hurt peeps at this point, oh yea, I have. But when you are in survival mode, you have to give up something. I cannot go down with the ship. Will I be there, HELL YES, but I cannot lose myself in this thing anymore.
So my confession is this. While love the Farmer and Momma too, I cannot do this anymore. There I said it. I am ME. and Momma knows this, she gave me the words yesterday. This whole situation is killing me softly, and everyone and relationships around me. While it is a daughter’s duty to do this, I give. Because simply, I am me, and I give……
I want my old life back. i want to be free again. I don’t want to have to worry about the things I have been worrying about. Trust me they never go away, but when Momma told me yesterday, “I am ok, go and do what you NEED to”, well it hit a chord in me. Momma knows me, probably better than most.
I simply cannot deal with what SHE has been given. So while it breaks my heart, I’ve removed myself from the situation. It doesn’t mean I won’t still be there checking up on everything. It just meant, sometimes things are so painful you have to remove yourself from a situation and re-evaluate what you have.
I love my Momma, but it has become to painful for me to be there. While it may make sense to some, it really does not to me, but it is something I have to do.
I’ve had a rough couple of days lately. Not just because of Momma, but some other issues as well. I decided, I needed to clean out my purse and wallet, because it has become a little heavy lately. I take my purse with me every where, I even changed my purse lately from my “winter one” to my “summer one”. I have to laugh, though. Simply because I went through and demolished Momma’s closet, and drawers. That was a 2 day affair.
In the past few years, I’m not sure what my Momma was thinking, because I have slowly made my way through the house, and cleaned a bunch of stuff. It took me 3 hours to go through my Grandma Ruth’s writing desk that my Mom had taken over as her own. It is a very fine antique, that has a pull down desk with slots like the old-time desks, then it has 3 drawers in it. I cleaned it out and went through everything. I smiled, I giggled and I cried over things I found, and things I truly cherish. After filling up a trash bag, seriously, who really keeps old batteries, and cards from forever ago. I found pictures, that brought smiles to my face. I found letters, I had written from years ago. I found letters Momma had written but never sent. I found My Grandma Ruth’s picture book from the 1920’s through 1950’s, I don’t know who some of the people were, but I could find my Grandma and my Grandpa and also my Dad in the photo’s. Then I found my Grandma Ruth’s funeral book. It tore me up. My Grandma Ruth was a very main figure in my growing up years, she was my Mom so to speak. It broke my heart I could not attend the funeral. But when I found the book, with pictures enclosed. i felt a warm feeling that I can’t explain.
With the desk cleaned out, I moved onto Momma’s room, and went through her dresser. Now I don’t know about you, but I usually keep clothes in my dresser at home. Not my Momma. It is a 4 drawer dresser with a marble top that slides. (It’s heavier than you can imagine) I pulled out the drawers two at a time and dragged them into the living room. I went through everything, and became amazed at some of my findings. I guess Momma, did not want to keep clothes in her dresser, because out of 4 drawers I only found 5 t-shirts, but a bunch of everything else. I found more pictures, that I smiled, laughed and cried about. To me, these 4 drawers were a memory stash.
If you ever wonder if your parent truly loves you, go through their stuff. I found things I had sent to Momma years ago, and she had saved. I also found pictures, and one drawer was dedicated to simply books on tape. I had the living room torn up, and finally weeded out the stuff that could go, but saved a bunch of treasures.
I then moved onto the top of Momma’s closet. With things going the way they are, we needed more room to store momma’s supplies to keep her going. I pulled out everything from the top of the closet, and again the front room was torn up. I do have to giggle though to the Fed Ex driver who is a regular visitor to our house. He arrived, and I had Momma’s favorite hat on my head, and things thrown all over the front room when he made his delivery. He smiled at me, and told me “nice hat”, I had forgotten i had it on, and I smiled and said simply “cleaning out clutter.”
I’ve lived a lifetime of memories the past few days. I’ve remembered momma at her best, when things were “normal” whatever that means. I can see the things she treasured, I’ve kept the best of things, and even brought them to my house, when the Electrician looks at me and says, “What’s this?”. I simply look at him and say, “This is my Momma’s and I’m keeping it.”
The Farmer and I have gone through a multitude of things lately. We have shredded stuff, and giggled, and hugged over the past. Momma is Momma, but she was the glue so to speak. I found a bunch of pictures, that I have taped to her closet, simply so she can look at something when we need her to stand up, so I can finish cleaning her. I will not explain that statement, you can draw your own picture.
I have learned a bunch of things over the past few days. I’ve had some highs and some definite lows. That brings me back to what I originally waned to post about. I cleaned out my wallet today, and I found something I have carried in my wallet for about 22 years now. I would like to share it with y’all.
It is a small square with a cross, that has been stitched into a pocket, and in that pocket is this:
So, my scanning skills are lacking, but it something I have tried to do over the last few years…. God is watching over me, and he knows just how much I can handle, and what lesson’s I need to be learning….. I’ve learnt a bunch the past few days, and I’m still learning.
Some people get uncomfortable about this, but I’m ok with it. Simply for the fact. I Am Me. period, end of sentence. Whatever is thrown my way, I will deal.
And at others, you simply just need to sit down and giggle…..
And sometimes, you just let moments happen…..
But then there are other times you say, What the heck…..
And then you remember….Life is precious…..
I have been doing some cleaning around the Farmer’s lately, and I wanted to clean off the bulletin board, right next to the phone. It has all of the important stuff on it. A calendar, so Caregiver Beth and I can keep track of our days. It has Momma‘s med schedule on it, so we don’t miss a dose. It has Momma’s script for her monthly meds on and let’s us know when to call in for refills. It has phone numbers on it. I will admit, when I left this past February on my cruise, I wrote down EVERYONE’s phone number and Caregiver Beth added her’s to the bunch. I went through the business cards on it, and scaled them down. After all, I do not think we need the phone numbers to Momma’s Cancer Doctor anymore, since she has been Cancer free now for over 10 years.
I did some housekeeping on the bulletin board, some of the things on there had been there since 1995. My wedding announcement was still hanging up there. In my housekeeping chores, I came across something that made me wonder. It is a newspaper clipping ( I have a couple of those in my wallet, so this nut doesn’t fall far from the tree). I saw it, read it, and then kept it.
I gave the bulletin board a new cleaner look, that we all can follow. But this newspaper clipping has just hit me, and hit me hard. The reason? Simply, this is Momma and some of her philosophy.
I don’t know if I have ever mentioned, but my Momma is 1/2 Irish. Trust me, it shows, and while the Farmer and I know this, other’s do not. She can show her Irish when you least expect it. That’s why I found this newspaper cutting so fitting and it has given me some understanding and also a little insight into her.
This is how it goes:
Take time to work,
It is the price of success.
Take time to think,
It is the source of power.
Take time to play,
It is the secret of perpetual youth.
Take time to read,
It is the foundation of wisdom.
Take time to be friendly,
It is the road to happiness.
Take time to love and be loved,
It is the privilege of the Gods.
Take time to share,
Life is too short to be selfish.
Take time to laugh,
Laughter is music of the soul.
It makes sense to me why Momma needs to giggle. it makes sense to me all of those other things to. This is MY Momma. I feel a better understanding of her. Some of you may not know, this is my step-Momma. To me, she is My Momma. Her and I have so much in common including our names. We had similar things happen to us at certain times of our lives. She made me happy when she married the Farmer. She gave me her best, she thought she would never be a Momma, and trust me folks when I tell you, she has been the BEST.
When I look back at things her and I have shared, and the fact, she believed in me when I did not believe in myself. That’s a Momma. Momma has been with me through the worst of times and the best. Guess what? I will be too. But I now understand the need for giggles. They are music to the soul, guess what? We will find them and giggle them, because…that’s what daughters do.
I’ve asked myself this question, quite a bit lately. All the things, that I know, seem to be upside down. I seem to go through my day, as norm, but things that used to make me happy, well…they still do, but it is like a sadness has fallen upon me and I don’t quite know how to handle it.
Things with Momma? They are painful. I hate to see how she is now, and I question, the modern medicine. Yes, she is alive, and Yes, we enjoy her company, most of the time. But where did her quality of life go? The Momma, I know today, is not my Momma. There I said it. The woman I see before me today, is NOTHING, like what I know. Between the Parkinson’s, the Parkinson’s Dementia, and just plain old “stuff”, this is not my Momma.
It hurts me to the core, when she cries, because her mind has given her a scene that she thinks is real, but it is not. It hurts me that she cannot swallow, so she drools worse than a 2-year-old teething. It hurts me when she tries so hard to stand and walk, and she gets scared, because her limbs are gripped in the stiffness, and she cannot make them work the way she wants them too. It hurts, because her neck is full of spasms, and she cannot hold it up. It hurts me because she is in pain, and full of “things” in her mind, and I cannot help her. There, I said it. I. Cannot. Help. Her.
Oh sure, I can give her a bed bath, and scrub her head, so she stops itching,, I can clean her up after she goes on the potty. I can hold her hand and just sing to her and she smiles and sings too. I can hold her hand and talk to her in soft tones, and tell her stories of our past, they seem to comfort her. I call the Farmer in on particularly rough moments, so he can back me up, so she will believe what I am saying. Momma is tired. I know this. Heck for that matter, the Farmer and I are tired too.
It is not all doom and gloom. There are moments, when Momma shines through and it is truly a joy to see, but they are coming farther and farther in between. It’s okay though. Truly it is. What will be will be.
I haven’t written on my blog for a while, simply because, when I started this blog, it was about my life with Momma. Life with Momma has been painful lately, and while it is hard for me to write this, I owe it to myself to see it through. I’ve been contacted by so many people, that have the same disease as Momma. Parkinson’s Disease. I’ve made a lot of friends through this blog as well.
While it is painful for me to share with y’all these things, I will do it. If only to let y’all in on my world and let you know, or simply just to educate others.
I really just wish I could find my Happy Place about now, and trust me I will.