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 Hello, everyone. :) 
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Joined: Fri Jul 29, 2011 1:19 am
Posts: 9
Location: Lincoln, DE
Post Hello, everyone. :)
My name is Sarah and I found lbda.org for the first time very recently.

Perhaps I should tell you all a bit about myself. I have been married to my hubby, Eddy, for nearly 15 years. We have an eight year old daughter, Emmy. I live fairly close to the beaches in lower Delaware. My family is awesomely close and so very important to me. I'm a Christian and my church family is also important to me! Friends may as well be family and, honestly, I love to spend time with those who matter most to me. Sunshine is soothing. I love, love, love spending time at the beach or in the pool. Water is so relaxing! Campfires rock, too. Music calms my soul. I could go on forever!

Now, what brings me to this site.

My Father was diagnosed some time ago with White Matter Disease and the diagnosis will very probably change to Lewy Body Dementia after his MRI results come back in from yesterday's scan. As I sat here at the computer reading through the website, I was just amazed at how perfectly they described my father. My Dad, Ron, is 68 years old and has changed so very drastically over the past few years. Since my 8 year old daughter was born, he's gone from being mistaken for a young uncle ('He looks so young! There's no way he could be your father!') to being mistaken as my Grandfather.

Little by little, he seems to be shifting before our eyes. More recently, however, it's become much more clear to us that his dementia is progressing. It's emotional. Each and every one of you surely knows this all too well. I am blessed to find moments of beauty in the midst of such yuckiness. Lately, though, I find myself dreading certain moments. Recently, he spent time talking to 'that nice man in the Ohio State shirt.' He seemed like a great person to talk football with. That was my brother, his namesake. When will it be me?

Okay. Enough rambling.

I can't wait to dive into this board! It'll be nice to have good conversation with others who 'get it.'

_________________
Don't tell God how big your storm is. Tell the storm how big your God is!

“Do not kiss your children so they will kiss you back but so they will kiss their children, and their children’s children." Noah benShea


Fri Jul 29, 2011 7:06 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Hello, everyone. :)
Welcome, Sarah. Sorry your dad's disease brings you here, but as you have already noticed, this is a very caring and supportive group of CGs who most certainly do "get it." It is hard to watch our LOs change so much. My 87 y.o. mother is going through a big downturn and it is so sad that there is nothing more that can be done. She has been in an SNF for a year and a half. I dread the day she does not recognize me.

Hope you will come back often, learn much, and get whatever support and comfort we can offer!

Julianne

p.s. I grew up going to the coast of Maine for the summer, so I definitely understand your love of water!


Fri Jul 29, 2011 7:14 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Hello, everyone. :)
While I was 24/7 caregiver for my husband, he not only didn't know who I was, but there were three of us--Capgras syndrome. Since he has resided in his ALF, he knows who I am and is happy to see me. So your situation may not be permanent. I feel it has to do with the fact that I am no longer his caregiver, but don't have any idea what the connection would be.

Gail


Fri Jul 29, 2011 7:22 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hello, everyone. :)
Sarah, welcome! I'm so sorry that you have to be here but so glad you found us. It's a safe and understanding haven when Lewy is turning your whole world upside down. I share your faith and it is also an important [most important] part of my life. But no one who hasn't lived with LBD can really understand what it's like, not friends, not family and that's why we are here, for both knowledge and support. 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.


Fri Jul 29, 2011 7:39 pm
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Joined: Fri Jul 29, 2011 1:19 am
Posts: 9
Location: Lincoln, DE
Post Re: Hello, everyone. :)
Thank you for the warm welcome, Julianne. :) My Mother lived along the coastline of Maine for part of her childhood. I think once you've spent time in Maine that it must stay with you always. She has such warm memories of her time there!

Hi, Gail. I appreciate your welcome, also! Interesting that things improved with a bit of distance. The human mind is such a mystery!

Mockturtle..you hit the nail right on the head. Faith is the most important part of my life! I cannot imagine getting through any day without my faith, much less through the trials that we face from time to time!

~~

I live 10 minutes away from my parents. My Mother is juggling a full time job and caring for my father. It's challenging, to say the least. While I know she feels drained, she gives so much of herself that it amazes me.

I have two brothers and both live locally. It's great to have family so close.

Please bear with me. I keep seeing abbreviations and have NO idea as to what most of them stand for. I'll get there, though! I hope!

_________________
Don't tell God how big your storm is. Tell the storm how big your God is!

“Do not kiss your children so they will kiss you back but so they will kiss their children, and their children’s children." Noah benShea


Fri Jul 29, 2011 7:59 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Hello, everyone. :)
Welcome to your haven from this disease, Sarah. The people here are a gift from God - they have been there, done that, and are still doing it! I would not have been able to carry on looking after my Dad without this forum. They have advice, humour and a shoulder to cry on when you need it. Never be afraid to ask about anything - we are all learning from each other,
God bless,
Ger xx

_________________
cared for Dad who passed away on January 28th 2013 R.I.P.


Fri Jul 29, 2011 8:06 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Hello, everyone. :)
Hi Sarah - welcome and sorry for your need to be here. I grew up not too far from where you are, and my dad who had many diagnoses, including LBD, spent his last 17 months in Easton, MD in a wonderful ALF.
I was just in your area 2 weeks ago - my parents, grandparents and great grandparents all had their honeymoons in Rehoboth. I have to have my Rehoboth fix every year. I have never heard of Lincoln - is it near Seaford? Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Jul 29, 2011 8:31 pm
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Joined: Fri Jul 29, 2011 1:19 am
Posts: 9
Location: Lincoln, DE
Post Re: Hello, everyone. :)
Thank you, Ger. I have no doubt that this is an awesome community. I posted this thread such a short time ago and have already had such a warm and caring reception.

Lynn..Lincoln is just outside of Milford, which is approx half way between Dover and Rehoboth. My favorite beach is Cape Henlopen, though we do hit Rehoboth from time to time! How could we not?!


My hubby, daughter and I just had the BEST surprise! My Mom and Dad stopped by for an unannounced visit. Apparently, they went out for dinner and a drive and decided to head over this way to say goodnight to their youngest grandchild! We were running insanely behind with making dinner. So, I got yummy leftovers, time with my parents and Emmy got to read a story to her Grandfather.

While they do still get out of the house from time to time, it is usually with GREAT effort and seldom 'just because.' I'd say today qualified as a good day. I'm grinning ear to ear. Yay for the good days!

_________________
Don't tell God how big your storm is. Tell the storm how big your God is!

“Do not kiss your children so they will kiss you back but so they will kiss their children, and their children’s children." Noah benShea


Fri Jul 29, 2011 9:05 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 191
Location: Portland, Or
Post Re: Hello, everyone. :)
Welcome, Sarah! I'm fairly new here, too. You're right, it's so great to be able to be in contact with others who "get it". I've already started looking for what's going on with my "friends", and find that everyone here is so caring and comforting.

_________________
Ellen 59, caregiver for mom Marion 82, dx LBD Feb 2011


Fri Jul 29, 2011 9:24 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Hello, everyone. :)
Welcome, Sarah. We do all get it about things on the caregiver side. (Even the scientific community doesn't fully get it about things on the Lewy side.)

LBD seems unique to each person. It is not likely that your father's case will match exactly that of any of our loved ones. But as you ask questions and browse through past threads you are sure to see many similarities and many individual pieces that are exact matches. I hope you will find as much comfort and information here as I have. This is a wonderful site, and we are glad to have you here, too.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Jul 29, 2011 9:34 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Hello, everyone. :)
So glad they stopped by to see you tonight. I'd definitely say this was a good day, so cherish it!
My in-laws used to live in Milford, now just outside of Milton towards Lewes, so I am very familiar with Milford and in fact, go through Milford on my way to the beach. Cape Henlopen is really nice! Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Jul 29, 2011 9:37 pm
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Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: Hello, everyone. :)
Sarah, I have only been a part of this forum a short time. I am a full time caregiver for my 69 year old father. He lives with my husband and I along with our children. I also have a full time job which I am lucky enough to manage from home. I have to say I'm not sure how I would have made it through the last few weeks without being able to read, learn, express, reach out, and question through this forum. It's truly a gift that you should embrace. Prayers for your father, you, and your family!

Michelle


Fri Jul 29, 2011 10:08 pm
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Hello, everyone. :)
Welcome! My mom is also a Mainer (from New Sweden) and she also talks fondly of her childhood there. I hope you find the forums as useful as I do. Everyone is so caring here. By the way, I love your quotes in your signature line.

_________________
Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Sat Jul 30, 2011 4:17 pm
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Joined: Fri Jul 29, 2011 1:19 am
Posts: 9
Location: Lincoln, DE
Post Re: Hello, everyone. :)
Thanks for the welcome, Em. I truly do enjoy what I've seen so far. Soon, you'll all see my Mother follow!

Jeanne? Thanks! One thing I can say that surprises me is that from a descriptive standpoint, it was like going down a checklist of my Father's symptoms. So, actually, it's amazingly RIGHT on as of now. Of course, this is just as we begin to educate ourselves on Lewy's.

Wow, Lynn. Your inlaws live rather close to me. My daughter goes to school in Milton. Small world!

Michelle? I cannot imagine juggling your many responsibilities. Husband, children, home, Father with Dewy's...so much on your plate. I'm glad that you find so much support from this forum. That's awesome. Your Dad is most assuredly blessed to have a daughter who cares so much. :)

Dagoetz..My Mom lived in Belfast when she was a child. As for the quotes, thank you. I wanted to throw a third one in but it was tooo much. It's probably good that I left off at two, in any case. lol

_________________
Don't tell God how big your storm is. Tell the storm how big your God is!

“Do not kiss your children so they will kiss you back but so they will kiss their children, and their children’s children." Noah benShea


Sun Jul 31, 2011 8:32 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Hello, everyone. :)
Sarah,
I want to extent a warm welcome to you , glad you found a place to be able to read and better understand LBD!

_________________
Irene Selak


Tue Aug 02, 2011 7:46 am
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