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The place to be.(1)
Jim Broede
Posted: Wednesday, August 9, 2017 1:14 AM
Joined: 12/22/2011
Posts: 5462


The only place I post. On these message boards. Is in musings. Because this is where I feel comfortable.  And welcomed. Thing is. I’ve been an unusual care-giver. With some unusual ideas. On how to go about the art of care-giving. And the art of living life, too. And I’ve been pretty much free. To express myself. In musings. More so than in the other forums. Seems to me that innovative and creative ideas have the best chance of being tolerated and even accepted. Right here in musings.  I’ve been here for many years. Even now, nine years after my dear sweet wife Jeanne died of Alzheimer’s. To prove, among other things, that there’s good life after the Alzheimer’s care-giving experience. My life has never been better. Yes, I’ve been blessed.  Rewarded, in a sense. For taking care-giving seriously. Of course, it didn’t happen overnight. It was a gradual process.  In the beginning I didn’t know if I’d make it. I could have failed. I was scared and beleaguered. But love of Jeanne, and love of life, conquers everything. I learned most of all to diversify life. To not allow any one thing – such as dementia in a loved one -- get me down.  To make the best of it. Yes, the best of life. I’m still doing that. I don’t know about the rest of you. But I’m having fun. That’s why I’m sticking around. Right here in musings. Hope the rest of you do, too.  Let’s make this the place to be.  --Jim  

 


MPSunshine
Posted: Wednesday, August 9, 2017 5:52 AM
Joined: 5/21/2016
Posts: 2007


Jim, I'm glad there's musings. And you do encourage people. Sometimes I wonder... what happens to all this writing, and these people typing away and then where does it all go? Maybe better to be outside with the garden? The morning light through the branches? Going there.
chrisp1653
Posted: Wednesday, August 9, 2017 10:18 AM
Joined: 1/23/2017
Posts: 1281


Or perhaps do both, as time and circumstances permit. Nadine, I know you lead a busy life. Maybe it would be more correct at times to say that your busy life leads you. But you seem ( to me, anyway, ) to be an organized person, so this morning, if the weather is nice, then the garden it is. On some gray, wet morning, maybe roaming around here in the basement can do the trick. I know that Jim gets outside for a walk every day, and still finds the time to tap the keys. For me, I think the key tapping is done. Sun is coming in the kitchen window, and breakfast calls.

 

Chris


BlueSkies
Posted: Wednesday, August 9, 2017 10:03 PM
Joined: 2/24/2016
Posts: 1096


I think what Jim says is true.  This is the only place I feel comfortable and safe anymore.  I believe I will only post here occasionally from now on.  I also plan on spending more time writing my poetry and being outside where I am the most content.  

Here in musings, I am accepted for who I am and where I am at with this d*** disease.  At least I hope that is so.  I have quit the other boards and will give it a shot here from now on.  I need a place where I feel safe to express what is inside.   


llee08032
Posted: Saturday, August 12, 2017 11:02 AM
Joined: 5/20/2014
Posts: 4408


Dear Sweet Blue,

You have been through Hell and high water and are entitled to share all! Please know that no matter what board you share on, you help others with your writing. You touch and reach out to others who may be going through similar experiences and hesitating sharing about it. I think more people admire you and care about you than you may realize. 

Helping and supporting others is what counts and the overriding principle over personalities. I am tying to practice principles over personalities in my spiritual journey and sometimes it's easier said than done. That and writing is one of the ways I'm trying to deal with my anger which as you know has me terrified at times.

There are fixed ideas and beliefs surrounding not only the topic of dementia but PWD and how they should live their lives and caregivers and how they should provide care. But keep in mind there is noting fixed about a disease that progresses and is forever changing. 

Lastly, I hope you felt supported on the Y/O board.

Keep letting out the pain my friend and never ever feel shame in doing that! It is okay to not be okay!


BlueSkies
Posted: Sunday, August 13, 2017 11:49 AM
Joined: 2/24/2016
Posts: 1096


 llee,

I understand the "overriding personalities" thing.  Has always been a struggle of mine and even more of a struggle lately since the increased sensitivity with this illness.  That's all I want though, for us all to support and be there for each other.  I think accepting where we are in this illness is the best support one can give and of course to listen ("really listen") to what others are "really" saying.  So thank you for listening and for your wonderful support.  Hope I can do the same for you.

The problem I am having now is that I am starting to have trouble figuring out what I am hearing (reading) and what is "really" being said anymore. Which is sad since obviously this is sooo important.   My judgement is taking a hit also, so I'm not sure I am right, even when I think I know.   Wow, what a confusing mess I feel I am getting in.  Guess that's why I said, "down the rabbit hole, I fall".  It really does feel like I am falling into a crazy world that is making no sense.  Hope this slows down.  I'm getting a little scared.  Hence...the anxiety that seems to be a daily companion...it's an anxiety born of trying so hard to make sense of everything.  Here I go...rambling again.  Seems to be a new thing I am doing.  cest la vie...what can I do.  Just trying to hang on...

 


Eileen72
Posted: Sunday, August 13, 2017 4:39 PM
Joined: 6/10/2017
Posts: 312


Llee, a gem...it's ok not to be ok.. I didn't know that. 

I was trying so hard to be ok...so for now I will be not ok because I'm not.

Fondly, Eileen

 

 


sharon11daugherty
Posted: Sunday, August 13, 2017 5:51 PM
Joined: 8/6/2015
Posts: 1736


As I have had attention problems all of my years, Blue Skies what you are saying makes  sense to me.  My mind is a constant source of ideas, subtitles and insecurities! Is that a word?. People have said what I have experienced is "not so" , but frankly I believed it to be true. I need to practice my listening more and  fixing less. Perhaps I need not to share quite so much!

I am unaware of what this year holds , alone, without a partnership of a mate, however, I know it will be a time of thinking through what is important, what I do well and what I can continue to do as I age. Visiting my sister's and friends for a month has given me glimpses of opportunities. I have so enjoyed the business of others lives, confident, that I am thankful those days  are over for me.  I do not want any drama or judgement, that makes me uncomfortable. My sister asked me if I had been living under a rock?  I suppose I have, it is comfortable for me! I may relocate from that space but no time soon.

Blessings, sharon


llee08032
Posted: Monday, August 14, 2017 9:27 AM
Joined: 5/20/2014
Posts: 4408


I understand ((((((((Blue)))))))). Misinterpretation is an issue for me and I can get things wrong or take things the wrong way. Read things wrong and hear things wrong. I  think it is part of the disease. Lately, I am sensitive to the extreme. I try to separate my emotions and feelings from what I'm trying to interpret but it doesn't always work. I learned long ago (the hard headed way of course) that it is a fact that I have feelings but that my feelings are not always factual and based on real events. I try to hold onto that my feelings aren't always factual and it does help sometimes.

You have been a great source of encouragement, strength and support for me Blue. I greatly admire your spirit, courage and strength. God's got you!


llee08032
Posted: Monday, August 14, 2017 9:29 AM
Joined: 5/20/2014
Posts: 4408


Eileen you are a gem also!
chrisp1653
Posted: Monday, August 14, 2017 1:39 PM
Joined: 1/23/2017
Posts: 1281


llee, I believe that misinterpretation is not just a problem for PWD's, but for most of us. I can look back and remember many times when I have misread a situation, or a thing someone has said. It's like life in general, or maybe child rearing. There's no instruction manual. We learn, or try to learn, by experience, by reading, by talking with others, but there's no set formula to guide us all of the time.

By the way, I love your statement about BlueSkies : God's got you . That's so beautiful, and powerful. As for what you said to Eileen, I 2nd it, or 3rd it.

All you people in here, whether you come here hurting, or broken , with dementia or belonging to the " so called " normal side of things ; you all put everything on the table when you write. You open up closets that in other times were locked. I applaud every person here. You are shining a light on the ugly, the unmentionable, and the covered up things. You have no limits.

You are my gurus. Thanks to you all,

 

Chris


Eileen72
Posted: Monday, August 14, 2017 5:17 PM
Joined: 6/10/2017
Posts: 312


To all,

A warm and wonderful place...called musings...people caring, sharing, listening ..free to express that what is innermost.

Blue Skies, aka my Julie, brought me here..

Julie, Llee gave me a window into that what I wanted most by their honesty, fearlessness, trust and love of life.  Life that dealt them hard blows.  But they were here,putting out their hands, openly, to help, to pull the drowning from turbulent waters. 

Zeta, in those same churning waters found safe haven here as well. 

Sara, Chris , Jim and others I may of forgotten in my chaotic mind , at the oars of the boat , helping to steer me by saying I was ok just the way I am, till I find a way to a new and foreign shore.

I hear Sharon's words....that new path, scary to go down it alone.

I would be remiss not to mention Mike...sent him a friend request because he was in a situation quite similar to the one I found myself him...his words have also given me a look into a world I didn't know if I could partake in.  But with baby steps I am.  I used to ride my bike but because of being a lone 24/7 caregiver I couldn't.  I got it out today, washed the very dusty bike, put air in the tires and tooled around the block.  Tomorrow morning I will take it to our local farmers market, fill my baskets with fresh fruits and vegetables and share my bounty.

It is a new day, a new life, and I have decided I want to be part of it.

Fondly, Eileen 

 


BlueSkies
Posted: Tuesday, August 15, 2017 7:06 AM
Joined: 2/24/2016
Posts: 1096


Yes, we are "opening closets", as Chris said.  I like that.  It's not good to stuff feelings or hide your hurts.  Best to get it out in the open.  Then others see and know they are not alone.

Eileen, riding your bike.  How wonderful!  So happy you are getting out and enjoying life.  While riding, breathe deeply, feel the wind and sun on your skin, listen to the birds, the sound of the wind rushing through the trees.  So much beauty out there to enjoy and to make you feel alive.  Run outside in a rain shower.  Get soaked and laugh.  No matter the circumstances, we can find moments of joy, but we have to be open to them.

Llee, so glad you feel I have helped you.  You have helped me many times also.  With sharing your journey and your kind responses to many of my posts.  Your brave and gentle faith has lifted me up many times just when I needed a lift.  I know God has you as well!

Sharon, so glad to see you here.  I've missed you.  You have been through so much and been so strong and brave through it all.  You have a beautiful life ahead of you, but take your time.  No rush.  Get your bearings, steady your feet.  Sometimes, under a rock is where we need to be.  


Eileen72
Posted: Tuesday, August 15, 2017 9:24 AM
Joined: 6/10/2017
Posts: 312


My dear Blue Skies, 

Ride I did...zucchini,cucumbers, tomatoes, peppers of every color, sweet corn, cantaloupe, peaches, apricots...and so much more...filling my baskets to over flowing.  Stopped on the way back at my Mom's house (97 years old, lives a block from me ...independent ) shared the bounty. Next 90 year neighbor...shared.  It made me feel so good!

As like Mr. Toads and Angel Wolfs experience...Kathleen, the cucumber and tomato farmer...wouldn't let me pay!  Says she heard about DH and was praying for us. Tears to my eyes..such kindness. Thursday when I go back...zucchini bread for Kathleen.

And I heard the rustle of the trees, wind in my face, sounds of birds chirping, squirrels scampering up trees...wonderful! I had forgotten!

You have helped me step back into life and I thank you!

Fondly, Eileen 

 


BlueSkies
Posted: Tuesday, August 15, 2017 9:33 PM
Joined: 2/24/2016
Posts: 1096


Eileen,  

The description of your ride sounded delightful!  I am so happy you had such a great day and are "stepping back in life".  

How sweet of Kathleen, but I found it even sweeter that you will be making her some zucchini bread.  She will be delighted.

I have a big smile on my face tonight after reading your post.....Thank you, Eileen.


llee08032
Posted: Wednesday, August 16, 2017 7:05 AM
Joined: 5/20/2014
Posts: 4408


Eileen,

So lovely to hear about you cleaning off that dusty bike and hitting the road! Getting out there and nourishing others in the process will refresh and revitalize you. Happy and safe  pedaling Eileen.