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 Sad 
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Sad
Hi,
My best friend, the one who is always there to listen to me when new "Lewy Stuff" happens is gone on a week long cruise, I can't burden my daughter with any more of my heartbreak so I'm turning to all of you to just.......share.
I took Ken to the Neurologist today, we needed a new Exelon prescription. I took the caregiver with us because I can't get Ken into the car by myself, or out of the car and into the wheelchair, and so-on. Apparently the doc observed our little parade of caregiver leading tippy-toeing Ken with the gait belt and my bringing up the rear with Ken's 'fidget toy' in my hand. When he entered the room he told me how it is really hard for him to be a Neurologist and see the profound decline of someone like Ken and how this disease reminds him of watching a rising flood or fire destroy a house before your very eyes while you stand by helplessly. Ken couldn't tell him what the name for watch is or that the color of his lab coat is white. Doc then told me the Exelon and Namenda are probably not doing anything for Ken at this stage. So here I am, feeling so helpless, and sad and truth be told just darned sorry for myself and all of us who have to watch while our LOs brains wither away to mush. And for the privilege of this front row seat for the Lewy show we suspend our lives and our existence, we forget our dreams, we cancel our hopes and many of us lose everything we worked for. And we know how the show ends but we just don't know how many acts there are.
Sorry, bitter tonight. Sher

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


Tue Oct 26, 2010 11:47 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Sad
Sher,
I'm sorry for the losses you and your husband are experiencing. It is very sad.
Robin


Wed Oct 27, 2010 12:37 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Sad
Sher, it is sad and I feel so terribly sorry for you! We who have essentially lost our spouses to Lewy, even though they are technically still with us, know the heartache on a 24/7 basis. I can only weep with you and remember you in my prayers.

I do applaud his doctor for taking him off some medications that are horribly expensive and aren't likely to be helping him at all. That so seldom happens!! --Pat

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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.


Wed Oct 27, 2010 12:53 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Sad
Sher, We all understand and you put it so well. My thoughts are with you and Ken, the only thing we can do is to put one foot in front of the other, we have no control of this Lewy life.
Take Care,
Gerry

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


Wed Oct 27, 2010 7:10 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Sad
Sher,
We hang on to our Doctors fixing things and when they are at a loss it can really bring us down emotionally, I am sorry that you and Ken are dealing with this horrible disease, indeed Lewy is sad ! The best you can do is take one day at a time at this point !

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Irene Selak


Wed Oct 27, 2010 8:23 am
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Sad
Hi Pat, Gerry, Robin and Irene,
Thanks for the kind words and thanks for understanding. I think Irene pegged it- if our incredibly educated and experienced Dr. is at a loss to help then what do I have left to do but throw a pity party? I'm on to a new day now, had a good night's sleep because Ken had a good night's sleep and in an hour I have a wonderful young man coming in to shower Ken and we'll start another day together, for which I really am thankful. I usually know what our day will bring and I really do appreciate that, I know some of you are going through the violence and outbursts and accusations that Lewy can bring and I am not dealing with that right now. SO......happy day to all of you, may you have a good day with your LO and take from it something that makes you smile. Hugs, Sher

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


Wed Oct 27, 2010 9:18 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Sad
Sher - I'm so glad you've come to your "Lewy friends" for support, venting, etc. This site is invaluable for so many of us. I hope your day goes well, and my thoughts are with you and all the others out there dealing with this horrible disease. Lynn

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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.


Wed Oct 27, 2010 11:38 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Sad
Sher,
I am glad you had a good night's sleep, it really does put a different perspective on things when we are well rested, I hope your day stays on the upbeat side!
Glad you were able to share here!

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Irene Selak


Wed Oct 27, 2010 1:27 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Sad
Ah..."Sleep...that knits the ravelled sleeve of care," to quote the Bard. I am like you, and if I can get a decent nights sleep I can manage pretty much anything. I am "Miss Grouchy" when I don't get at least 7 hours. And I cannot go back to sleep after an interruption.

You are so eloquent in talking about the dreams and hopes and plans that we give up more and more as each day passes. If i gave a pity party I wonder how many of us would show up. Lots of days that I could host it.

Smiles, Nan


Wed Oct 27, 2010 4:02 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Sad
Quote:
"Sleep...that knits the ravelled sleeve of care"
How often over the past few years that line from Macbeth has come to mind! And, instead of, "Macbeth doth murder sleep", "Lewy doth murder sleep". Thanks to his taking Seroquel I now get six hours a night which is enough for me. I was really sleep deprived before. And so was he!

_________________
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.


Wed Oct 27, 2010 7:27 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Sad
Sher,

Your last few sentences touched me so profoundly because it put into words exactly how I feel:

"So here I am, feeling so helpless, and sad and truth be told just darned sorry for myself and all of us who have to watch while our LOs brains wither away to mush. And for the privilege of this front row seat for the Lewy show we suspend our lives and our existence, we forget our dreams, we cancel our hopes and many of us lose everything we worked for. And we know how the show ends but we just don't know how many acts there are."

There are so many things I want to do--volunteer work, classes I want to take, etc., but I feel like I can't commit to anything because I always have to be ready to help my family if they need me. I feel like I'm losing myself to my mother's disease, and I'm only 44.


Wed Dec 08, 2010 7:02 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Sad
Dear 'only 44,'

Thank you for being willing to help your mom at this stage. Too many your age are not around when the problems of elder care show up. I wish you were my daughter! You are doing the 'volunteer' job that matters most to her. That's worth something, you know.

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


Wed Dec 08, 2010 7:26 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Sad
Every one of us can relate to what is being said here.
Now that I am no longer on this journey, I am so tired I can't even think about doing any of those things I've been missing out on, but it only has been a week. It feels like I was in high gear for the past 3 years, being on call 24/7, bag packed by the door so I could leave at any given moment. I'm sure my energy level will increase again, but right now I don't want to open one more bill, insurance form, make calls to the DMV or anything that needs to be done. 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.


Wed Dec 08, 2010 7:36 pm
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Joined: Sun Sep 05, 2010 4:46 pm
Posts: 29
Post Re: Sad
Lynn You summed it up perfectly for me.
Sher know U are in our thoughts, I will include a prayer as well.
Anytime join us to vent. It helps us all.
Gayle


Wed Dec 08, 2010 11:30 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Sad
Lynn,
All of those things can wait, what's important now is you getting the rest you need and it will come back to you in time and everyone of us deals differently.

Take care of yourself now !

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Irene Selak


Wed Dec 08, 2010 11:36 pm
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