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 The Need for Social Support 
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: The Need for Social Support
Sher...
Wow. Thank you so much. I really needed that hug after feeling somewhat beaten up by the words of someone I do not even know.
I have already decided to take my own advice and avoid/ignore negative persons who drain energy that is much needed for more positive and productive things.
And I am keenly aware that so many on this forum have walked much more deeply into the journey than I have or want to. I am humbled by their grace and generosity of spirit for sharing themselves with others as they do. They have wisdom and experience that is so valuable.
However, for those who are earlier in the process, few though they may be, perhaps an item or two that I share could make a difference in their peace or happiness or feeling of some level of control. That is my prayer.

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Tue Nov 09, 2010 2:16 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: The Need for Social Support
Pat, - I'm very sorry. I am not usually known as a 'negative person' - but I am cautious. Life has handed me a lot of lemons. (For one thing, Dale's bipolar son, 44, died in prison a year and a half ago - about the same time as we were trying to figure out what was happening to Dale.) Please - I hope we can move on from this. Forgive me for causing you pain.

Is there a way to distinguish you from Pat (Mockturtle)? What do you suggest?

Thanks, Sher, for your reference to the poetry section ('proems') of this forum. The works are lovely expressions. I had not read them before. I wonder why there are no recent postings there. Is no one inspired anymore?

You also mentioned 'comic relief' and I could use more of that too. :P I'm still laughing about the idea of calling a taxi to get rid of the 'visitors'. :roll: Now, if I can just get Dale to forget the 'meetings' he had last night and the 'paperwork' he claims they sent us. We really need to sign it, you know.


_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Tue Nov 09, 2010 2:34 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: The Need for Social Support
Leone, all is forgiven. We all have rough days in this journey and we all need every single friend we can get. I am sorry for your losses.

I do not have a signature because I cannot figure out how to do it. I tried and had no success. Can anyone help with that?

PatS might work for me. I keep trying to remember that mockturtle is the other Pat.

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Tue Nov 09, 2010 3:29 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 728
Location: LA
Post Proems: Voice from the past
Dorthea November 9, 2010

Proems: Voice From the Past

Remembered by the new best friends
who questioned, ”They are where?
Are they not still inspired to write
or what’s the story there?”

They met on this revealing page
were never face to face
They shared their unique fears and woes
It helped them keep their pace.

They could not walk alone, you see,
the burden was too great
the outer world knew not their fears
and help came much too late.

They wrote about their loved one’s plight
It bonded them as friends
They cried and laughed they hugged
and joked through days and weeks on end.

Their journey ended near the same
in year two thousand nine.
Within six months the loved ones gone
while they are left behind.

This writer haunts the forum still
since moving on through life,
she’s more at ease to join you as
you struggle now with strife.

She offers tips or memories
but knows she can’t belong
and cannot be your new best friend
to try would be all wrong.


As it should be, I’ve watched you meld
and this is nice to know
you have a friend to learn with you
the lessons as you go.

The group who wrote the Proems
are trying to adjust… Its hard, you know,
but troopers still, they’ve learned ….
In life its ebb and flow

They stay in touch and gradually
they face the world somehow.
A few return, at first its hard,
To blend the then and now.

So read our poems and try to know
we left our footprint there
For all to see we tried our best
A road map to prepare.

In this short time since I first knew
that LEWY lurks about,
The news has spread outside these walls
And others have found out.

We’ve left our mark and only now
our mission here is done.
We hand it down for you, dear friends,
learned lessons to pass on.

DrP

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Last edited by dorthea on Fri Jul 01, 2011 5:42 pm, edited 1 time in total.



Tue Nov 09, 2010 3:51 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Dorothea
As the kids would say, that was 'AWESOME.' Thank you so much for writing. You express yourself so very well. Your's is a lovely talent!

With hugs,

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Tue Nov 09, 2010 4:15 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: The Need for Social Support
Dorthea, that is beautiful and so moving! Your footprint will always be here and I thank you for not leaving us behind, we who still struggle in the trenches. God bless you!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Nov 09, 2010 4:54 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: The Need for Social Support
Dorthea...
I have chills up and down my spine and a lump in my throat.
Thank you for paving the way. Thank you for coming back to give your gentle hugs to those of us who must go where you have been, so reluctantly, but knowing at least that we are not alone and that there are people out there who do understand and who care.
God bless you!
PatS

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Tue Nov 09, 2010 7:03 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: The Need for Social Support
Very wise, Dorthea. Thank you for the gift. Annie

_________________
Annie, daughter of brave Marie, dx 2007 and in ALF


Tue Nov 09, 2010 8:30 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: The Need for Social Support
Dorthea, I'm so please that you still follow our struggles. I do miss several members who lost their LO's so close together, I think of them often. I've always admired the strength and love you showed with Mr B. Take care of yourself and please stay with us.
Gerry

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Tue Nov 09, 2010 8:54 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 728
Location: LA
Post Re: The Need for Social Support
Gerry, did you realize that you and I joined the forum during the same month of 2007?

Dorthea


Wed Nov 10, 2010 5:22 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: The Need for Social Support
Dorthea, I knew we did, I always felt a connection with you, Renata, Dianne and M&M. When all of your LO passed I felt sad in so many ways. Frank is a little younger and in top physical condition so I think we still have years of struggling with Lewy.
Stay in touch,
Fondly, Gerry

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Wed Nov 10, 2010 6:16 am
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: The Need for Social Support
Dorthea,
Wow, thank you for that. And, thank you for still hangin' with us, we are lucky to have your insight and your incredible artistry. How are you doing since the passing of your LO in '09? I'm not familiar with your 'story' but I believe we all have the same storyline. I hope you are able to enjoy your day and share some of your incredible talents with your other friends. Thanks for the gentle reminder that those of us using this website have an unwitting yet extraordinary bond that will stay with us far past these "lewy' days. Sher

_________________
Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Wed Nov 10, 2010 7:16 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
Post Re: The Need for Social Support
Ahhh Dorthea...our dear lady of profound words. So well said! All I can add is "ditto." You covered it so beautifully! Is she GREAT or what?? :)
Still there with you and the others...MM, Renata, Dorthea, Sharon, Gerry, Connie, Mary, Pat, Irene, Robin...the list goes on and on. We made great friendships and many of us still stay in touch with each other...not always as timely as we used to..but our common bond is there and will be forever.

Now..no disagreeing..you are in this journey together...to the end.
I understand those who, for lack of a better terminology, took the prospects of someone disecting our past posts for a book, as infringing. We poured our inner feelings and hearts out to each other who were on the path with us..a disease not understood..stumbling, fumbling, bumbling along...sleepless..understanding..venting..crying..helping each other endure a wicked disease of "new territory." And yes, some of the horrible events we experienced while going through the world of LBD, remain dear to us personally. I don't think anyone here had negative intentions but were just trying to keep the privacy issue closely guarded.

Our proems were and continue to be compiled and edited by one of those who started the heading "proems" which will be published to share with the world. If you read past postings on this you will see that intent. Why hasn't anyone posted a proem in a while??? We are in a different place: after the end. Its your turn to add to the proems. :) Great therapy, try it!

That said: not enough books can be written on LBD to help those who are embarking on the maiden voyage of their journey. Read the Boeve papers (the best in my opinion) and you will have a good understanding of where your trip will take you. Cleveland Clinic is doing major research on LBD as is Mayo Clinc..those are great resources for educating yourself or for aid in writing a book. So yes, do a book as it will bring attention to the dreadful world of LBD but keep in mind peaceful respect of others.

There is no "set pattern" to LBD as you all know by now. Each patient is different as are their symptoms, drug reactions, etc. While you will see similar patterns they remain individual. Our story related to several here...almost identical...but "almost" is the operative word. :)

Glad to see so many of you "oldies" here..think of you so often and pray you are doing as well as can be expected. Proud to see the newly joined...this site will open a new world of friendship and caring for you. Welcome to you ... new friends. Blessings to all.

_________________
Dianne C.


Fri Nov 12, 2010 1:39 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: The Need for Social Support
Dianne,
"peaceful respect" and total privacy...you can count on it.
I am humbled by every person here.

And thanks for the heads up on Mayo and Cleveland Clinics.
My journey is the journey of us all. Reluctantly made. But determined to do it in love and looking for any treasures I can find in the darkness.
Love and Prayers,
PatS

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sat Nov 13, 2010 12:50 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
Post Re: The Need for Social Support
Life in Lewy World is/was humbling to all of us here. I would like to suggest each one of you keep a personal daily journal. (Robin or Irene suggested that long ago to me) Jot down a line or two each evening..you will wind up with your own book...your personal journey. Looking back over the years of notes and memos..its amazing..the job/life of a care giver. Each journal will be so individual as each LBD patient is so unique. No one size fits all here :lol: After the end...reading your notes...you will be both proud and in awe of the magnificent job you did. Reach out to family, friends for help..this job isn't for sissies lol. Take good care of yourself...with hindsight I wish I had done more of that. Its doable!
Blessings to all,
Dianne

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Dianne C.


Sat Nov 13, 2010 4:23 am
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