Part 9 Caregiver Series
How We Got Here
Once we started making changes to our daily lives things became a lot less stressful. I wasn’t watching her every little move ready to correct her at every turn or reminding her of everything that she had forgotten. Instead of moaning and groaning about all the things she could no longer do. I began clapping and cheering at all the things that she could STILL do.
Mom didn’t change, that would be impossible. She has Alzheimer’s Disease. I changed and that made everything else possible. I wrote a story about my mother that Mr. DeMarco of The Alzheimer’s Reading Room published on his website. MEMORIES-HER MOTHER REMEMBERED 1957, BUT NOT RIGHT NOW.
I remember getting the email on a Saturday afternoon in the middle of Lowe’s Hardware store. I started crying! You would have thought it was the Washington Post, but to me it was. I showed my husband and texted my Sister-in-law, my Best Friend, my daughter…hell maybe even my plumber!
I have always loved to write, it is something I have done all of my life. It’s always been something deeply personal and private. Besides, I’m a writing slob! I have always kept journals everywhere, just not organized dated ones. I would write on one page one day and sometimes entirely different books another.
I am organized in my mind. Oh, who am I trying to kid, it’s a mess in there too? I am constantly losing things, much to the frustration of my OCD husband. I would be a mess without his constant need for near perfection. We balance each other out I think. We make each other crazy and we love it…sorry, but that’s a whole other post!
Things were starting to go so much better although, I still wasn’t able to talk. When I think about it that is how this whole thing got started. When I couldn’t talk I had to write and write and write. I started writing about mom and how things were progressing. I wanted to keep an accountability of the changes we were making and the mark the changes that Alzheimer’s was making in our daily lives.
People wanted to read what I wrote. Me!? I couldn’t believe it! I had somehow found my way to Blogger and started writing there, only because I don’t have a program on my computer for writing. I didn’t have a clue what I was doing, you can tell if you read these comments on his site. I had no clue what a URL was! I looked and felt like such an idiot. I also changed one word in my closing statement. I decided to go with “rest” instead of “ugly”, we’ve come a long way from then to now.
This is off topic, but while going back over those comments other than Mr. DeMarco the first comment I ever had about my writing was from my now friend, Carol Noren Johnson. I knew we met through Mr. DeMarco’s site, but I never realized she was my first comment EVER. She is a fellow blogger at PLANT CITY LADY & FRIENDS and Alzheimer’s Caregiver to her husband.
He passed away on June 23, 2014. We still check on each other, back and forth usually by email. I want to say thank you, Carol! You have always been one of my biggest cheerleaders, I just didn’t realize you were also the first! I’ll never forget that and you are still in my prayers!
I didn’t need that therapist after all (some may find this debatable) because I found what I really needed… MY VOICE! Maybe not the real one, but the one I needed at the time.
Congratulations to you for finding your voice. We all need to be able to speak for ourselves and sometimes for others.
I was like you when I started my blog. I had no idea what a url was. I just started my blog to help myself remember what I had done that worked for the candida.
No one was more surprised than I was when people started reading my blog and emailing me.
Strange how things happen.
Yes it is Terry! Here I am 8 months later and I have just launched a second blog and started writing a book as well.
That is awesome, finding your voice. And learning to celebrate the good instead of looking at the bad, is key in longterm caregiving.
So true Kori!
I am sure it’s hard to find your voice to be able to speak up. I know I can’t always find it, but good for you 🙂
Sometimes I still have trouble IRL Robin it’s alot easier here!
There is nothing more empowering than finding your voice and knowing that others are listening to it. We are listening to you.
Thank you so much Lois. It has been a huge change for me and I have to say I love it!
It is always hard to find your voice and speak up – or at least it is for me. I am starting to wonder if my mother is showing signs of alzheimers. It is so hard to tell if she does not remember that we have had the same conversation several weeks in a row or not.
These are some of the first signs. Mom did that with me quite a few years ago, it took us along time to catch on. They become very good at hiding their issues.
I appreciated your line “I changed and that made everything possible.” That is powerful. Thank you for opening your heart and finding your voice. My sis-in-law died last month from Alzheimer’s as well.
Oh I am so sorry Carol. That is very painful. I had to change as you know Alzheimer’s wins out every time and you can’t fight it only manage it.
Congrats on finding your voice. I know how difficult it can be.
Thank you Michelle!
I really enjoyed reading this post, it was very uplifting and motivating in a lot of ways. So glad that you found that voice!!
Thank you very much Lesley, what a nice thing to say!
Thank you Kelli, my husband probably won’t agree with us!
I struggle with sharing what I’m feeling and envy you having found your voice. What a beautiful thing to accomplish! Writing is something that hasn’t always come natural to me, but I’m starting to share more and more. This post is such great motivation for me. Thank you.
Thank you so much Ashley. When the isolation becomes so desperate that you just want to scream I chose to write instead and it has made all the difference in the world.
Its so important to feel like you have a voice and I’m glad you managed to find yours! Make to most of it and be loud!
I plan on just that, thank you so much!
It’s a service to other caregivers, of that I am certain. And you know that I know!
What a wonderful compliment Carol! Thank you. I know you have seen it all!
Thanks you so much for this inspiring and useful post and congratulations ^_^
Thank you Diana!
Finding your ‘voice’ is powerful. Good for you! And keep at it!
Thanks Amy!
And that voice resonates through the entire community! I went over and read your first story. Such mischief in the tale! I’m so glad that you like to write. You have so much to offer the rest of us. Remember: People may read your blog once because something caught their eye. But it’s the writing skill that brings them back again and again. That says everything about you! 🙂
Thank you Diane you continue to inspire me every single day!
Your writing touches a nerve in many. Your role is an inspiration and I am glad you share it!
Thank you Haralee! I am enjoying it so much, it has become a great outlet for feelings and emotions I can’t afford to let out anywhere else.
Such a wonderful feeling to finally get to that point! Congratulations!
Thank you Angela!
Congrats on finding your voice! I know how hard it can be to figure out what you want to portray and what you are willing to express. Thanks!
It is a very fine line Britney that’s for sure, thank you!
It’s always good to stay positive.
Thank you!
It is important to have an outlet! Even if you just are writing for yourself, it is still important!
So true Krystal thank you!
I am so sorry to hear about your friends hubby. How great is the blogging community?1
It’s amazing Heather! Thank you.
It is difficult to find your voice.. but once you do it is amazing the results.. congrats!
Thank you so much!
Congratulations, keep up the hard work!
Thank you!
Congrats on finding your voice. Being a care giver is always a challenge. But can be very rewarding as well.
That is so true Rachael, thank you.
Congratulations on finding your voice – alzheimers is such a scary disease. x
Thank you Sarah, you are so right it is downright terrifying.
Good for you, Rena! You took a leap and landed on your feet. You have found your voice and it is a voice that resonates with others.
Thank you so much Helene! What a nice compliment and very much appreciated.
I’m so glad you are sharing your voice with all of us. You are one of my favorite blogs!
Well thank you very much Lana and may I say I feel the same way about yours. I love your relationship with your sons. You are a wonderful mother!
way to go on finding your voice and letting it speak out.
Thanks Becca!
this is so sweet! glad you and your mom are doing so well!!
Thank you Jess!
So awesome on finding your voice! This is a wonderful post, and you should be very proud!
Thank you so very much Jeanine!
I love reading your posts. You are so inspiring and so positive.
I grieved for three long months before I decided to pull up my big girl panties and deal with the situation. Now there is no looking back! Thank you Amber.
That’s so great that you’ve found your voice! Writing can be so therapeutic and you never know who needs to see it or who you will touch by sharing your thoughts and experiences.
You are so right April. It is also much cheaper than therapy! I have found something that I think will change my life forever and I couldn’t be happier. Thank you!
I am glad you found your voice. I enjoy reading your blog.
As someone who works with elderly patients it is important their caregivers find their voice and support. Your blog provides that support.
Thanks for sharing with us
Thank you very much Kathy. I respect all that you do I know it has to be an extremely challenging career choice.
Thanks for sharing your journey. It’s such a powerful story you’re telling the world. Good luck to you!
Thank you very much Nolie for your support it is very much appreciated. It’s people like you who make me want to right more.
What a great post! Coming from one who is naturally shy, I think finding your voice can be very difficult. Kudos to you for finding yours and putting it out there 🙂
I am also very shy in person but I guess sitting behind a computer screen gives you courage to say things you normally wouldn’t. Some people use it for nastiness I choose to use it for good. Thank you Theresa.
Congrats on finding your voice! I love reading your entries. It’s so close to home for me as I work with so many clients with Alzheimer’s 🙂
Thank you Annie, that means alot coming from someone in your profession. I appreciate it very much.
so happy to hear that you have found your voice, what a great thing to do!
Thank you Natalie.
that’s quite a big step up and that is what matters – I’m glad you were able to stand up for it.
Thank you Aisha!
It’s awesome to find your voice that will help you stand for the things you’re fighting for and that’s for the pro longing of your mom’s life.
Thank you very much Kathy!
Very happy for you for finding your voice, for continuing to fight. It’s a powerful feeling, and a huge step forward.
Thank you Laura, I feel so much stronger than I did just a few months ago.
What a nice article. You speak from your heart. I to am caring for a family member with this dreadful disease.
I am so sorry to hear that Kathy, it is so amazingly hard. I hope that you find some comfort here. I’m always here if you need me, you can also email me at rm29303@gmail.com. I am always willing to listen and commiserate.
Thank you Susan, you are a huge part of that support and you don’t know how much I appreciate it.
Thank you so much!
Why thank you…as I sit here a slam coffee after coffee down my throat haha!
Thank you Pauchee!
You are right, when you can’t change the person or situation, you have to change in order to move forward.
It is great that you have found blogging and writing to help you through this time and inspire you. You in turn will be an inspiration to others.
Thank you so much Pam. You can only change you that’s it.
I like your comment about finding your voice, and how you imply that we have different voices for different times! Great thought!
Thank you Kristen, that’s exactly it. Depends on the circumstances. we can be who we want to be. I want to be the best caregiver I can.
What a success! I loved reading about it and hearing that you found your voice.
Thank you Mary Ann!
It’s a hard thing to deal with and caregiving can be a lot to deal with. So glad you found your voice!
Thank you so much Chrissy it took me quite a while but I really did.
It is such a wonderful, freeing feeling to find your voice. I can totally relate. 🙂
Thank you Rosey!
I’m glad you are able to focus on the positive things that your mother still can do. It’s important to have those great memories of your mother from the past, but you should enjoy the time you have with her now too.
You are so right Risa!
Great and inspiring post. We write to be heard. It’s the best way to have a voice that I know. Thank you for sharing your journey.
Thank you so much for reading my journey kathleen.
Congratulations on finding your voice. It feels so good to get your thoughts out and to have an outlet. Congrats!
Thanks so much Deanna!
Congratulations! This was very touching, and i just wanted to say keep doing your thing.
Thank you Nicole very sweet.
I’m so glad you finally became able to share all you write.
I’m still back where you were, able to write (needing to write) but not at all able to share the core issue of why I write. For now, I share the recipes that keep my mind on other things and the humor that is my attempt to find something to laugh at. I hope some day I’ll be as brave as you are.
Oh Karen I am far from brave. If I don’t laugh I am afraid I’ll start crying and never stop. Since that’s not an alternative right now I just laugh harder. There’s alot I would like to say but I am just not that brave…yet. Thank you so much for your support it means the world to me.
You should be very proud of yourself. Finding your voice can sometimes be difficult and take a lot of courage.
Thank you Carmen!
So important to find your voice, your passion and purpose in life. Sounds like you are on your way to all those things. Having been touched by Alzheimers in my family, I can say it is very hard.
Thank you so much for your comments Andrea! It is very hard and this gives me a way to divert some of those hard feelings and try to turn it into something more positive!
When my husband was sick with cancer, I had to be the one to speak up for him because of course he was scared. He was so overwhelmed by the diagnosis. It helps to have someone who isn’t afraid to ask the difficult questions and be the voice of the person who is sick. I am glad you got your voice. I have so much respect for you as a caregiver. It is hard I know first hand
Thanks you so much Veronica! I love hearing from other caregivers. I hope everything is going good for your husband now. You are so right mom is not in the frame of mind to be able to ask those important questions that is up to me! Thanks so much for stopping by and commenting!
It’s wonderful to find an outlet! Congratulations on being published! I look forward to reading your book someday!
Thank you Roshni, with everything else going on it is very slow going but it’s all in my head just getting it down is the hard part.
I’m glad that you found a way to express your feelings and thoughts through blogging! I think it’s really important to focus on things your mother still can do and not on the things she can’t.
You right and that is a lesson I learned the hard way Ave! Thank you.
I think it is great that you are finding your voice through writing. It is a great way to vent and to get your thoughts out.
I so much cheaper than therapy!!! Just kidding thank you!
That is great that you found your voice! Blogging allows many to do just that! I’m glad to see that you are appreciate the good!
Thank you Barbie
It’s an amazing feeling when you find your voice and you have truly found yours and you’re sharing it with us. I love reading your posts because they bring so much inspiration to others.
Thank you very much Amanda! I hope you will continue to come back often.
This is such a great outlet for you and I’m sure a huge source of comfort and support for others going through this. I’m not going through it, but I still really, really enjoy reading.
Thank you Liz that means alot!
I think when we find our voice, (our niche)…the world opens up and anything becomes possible. You have a great blog over here, one that can help so many other people.
Thank you Tami what a nice thing to say!
Another amazing post. Being able to find your voice in the midst of it all most have brought tremendous joy to you. Cheers!
Thank you Marielle, I admit it feels awesome. I am such a happier person and in turn mom is happier.
Thanks for the mention above. So I was the first to comment! Glad I could encourage you. Your blog has really taken off with comments!
I am trying to find my voice as a single person and new widow.
However, I do know that I want to stay informed about Alzheimer’s and am writing a counseling dissertation about caregiving–possibly the most difficult role anyone ever has–up there with parenting a special needs child.
Thank you so much Carol, yes you were my first! I should have know you have always been such a big supporter. I appreciate you very much and you are always in my prayers.
Your blog and posts are very inspiring! It’s great that you have found your voice for a cause that means a lot to you!
Thank you very much Felicia!
I enjoy reading your articles they are very inspiring. Especially the line – “I changed and that made everything possible.” Wow. How that would change so many lives, including my own. Thank you.
I have realized now that when I changed my way of thinking that it honestly changed my way of life. Things are much easier now, I don’t worry as much and I am a much happier person in general.
I love reading your blog. You can help a lot of people going through what you are and have done. Sometimes writing can be the best therapy for us. I love that you and Carol are now friends and continue to be friends. I do believe everyone we have come into our lives are suppose to be there when they come into our lives. Purpose for everything and everyone. Thanks for sharing.
I so agree Rebecca and also thank you very much. It is a very isolating job being a caregiver, especially one in a new home and state. This is my only contact with the outside world on most days and that contact means so much to me. If I can help one person then I feel like it is so worth it.
It really feels great when you come to a realization. Doesn’t it?
Absolutely Kristen and thanks!
this is so touching. i’m a very emotional person and i couldn’t imagine the pain of seeing your mother lose her memory. 🙁 i admire you, the patience, and love you give your mom. may God bless you 🙂
It is both painful and emotional, but I try not to dwell on it. There are days when I shed tears, days when I could pull my hair out and days when I laugh constantly. I have decided I would rather laugh. Thanks so much for your comment Yan!
My grandmother recently passed away from Alzheimer’s so I know that it’s a struggle for the entire family! Sending prayers your way!
I am so sorry for your loss Ashley. You are so right, I know you must be hurting. Sending hugs and prayers right back.
I’ve not known anyone with Alzheimer’s, but my Grandpa had several major strokes and couldn’t function or talk. He lived with us for the last year of his life. We think he recognized us, but since he couldn’t do anything but stare at things and shuffle around the house, we couldn’t tell. Then my other Grandma had dementia and my mom also took care of her until it got so bad Grandma was having major freak-outs almost daily.
Taking care of family members with aging issues is hard. I’m glad you’ve found a way to channel your feelings and emotions about it in a healthy way. My mom didn’t. We hardly speak now because she became very violent towards me while taking care of my Grandpa and then kicked me out an hour later (i had just started college and had no money or place to go) as well as said so many horrible things about me to neighbors and relatives. I know it was the stress and the emotions exploding, but our relationship became very strained and 9 years later it still hasn’t recovered. I’m so happy for you and your family that you have such a positive outlook on all of this. Good luck and God bless.
I hear often that Alzheimer’s can destroy the whole family. I am trying to learn all I can to keep this from happening to ours. It’s very hard, tensions get strained, feelings get hurt. Maybe there has been enough time gone by for you to make a move to repair this rift in your family. I’m always here to talk to and I will keep you in my prayers. Thank you so much for reading and commenting.
I have a friend who thinks her husband is at the beginning stages of this illness. I will try to support her as much as I can.
Your voice never lost..keep speaking!
Thank you so much Kay. I am so sorry for your friend. I can’t imagine not having my husband through this nightmare. I hope you will direct her here or some of the other sites I talk about in my post. I will add them to my prayers.
very nice to read about this.do anything that makes you feel good!
Thanks so much for reading and sharing Jane!
Kudos to finding your voice. It often takes people a lot longer to get there. I wish you great luck with that and I saw in that you’re on the way with a 2nd blog too. Very nice.
Thank you Nile, yes I don’t know if it’s wanting to stay busy or insanity but I wanted something more light hearted and it is something else I am very passionate about! Thanks so much for stopping by and commenting!
You have a great voice and I always look forward to your posts.
I love your tude too–about your mom, your life and your husband.
Many people never understand they have to do the changing not the person with Alzheimizers. (I’m a geriatric social worker who specialized in dementia so if you ever need to vent but I bow to your wisdom!)