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 behavioral 
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Joined: Thu Jun 21, 2007 11:31 am
Posts: 9
Location: alberta canada
Post behavioral
hello; my LO has been diagnosed with LBD. my reactions to his behavior are not always pleasant. because i am scared; trying to help him;and feeling worn out...

i keep falling into the trap that there is nothing wrong with him and when will he stop pushing my buttons. i have printed and re read several pages from the LBDA. soooo helpful but i feel like an alcoholic falling off the wagon ten times a day. i do apologize to him and he is ok but im not.

some one please talk to me....no one comes around lately and the phone just dont ring...

we are about one year into LBD and just finally got a possible diagnosis so you can imagine the damn frustrations we have gone thru.

i will write more later. patgl :cry: :cry: :(

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patgl

.."carry us thru this valley, "..


Wed Jul 11, 2007 7:45 am
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Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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Patgl:

I'm 100% there with you - at first, just before the diagnosis, I was totally losing it WRT Cal, our LO with DLB. I *SWORE* he was drinking with the neighbors and waking up hungover, or was just being contrary or was taking something out on Jon for a perceived slight. The worst part is that he seemed so "normal" on the good times - how can anyone with a serious problem just get "better" on random afternoons?

It's hard, I know. The good news, if there is any, is that you're not alone in feeling this way, that the right treatment strategy can often make things "more like they used to be", and that, somehow in this, we find the mental place that lets us do this with some degree of civility.

Take care of yourself; you need a respite care strategy, because even Florence Nightengale got a few days off now and again; caregiving is a fast track to illness and death for many spouses, and without being able to get away from it for an hour, a day or a week, as the situation warrants, you're risking your health.

Eric

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Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Wed Jul 11, 2007 12:43 pm
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Joined: Fri Feb 16, 2007 6:13 pm
Posts: 102
Location: Fayetteville, AR
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Patgl,

Thank you so much for sharing with us. I've always thought that LBD is harder for caregivers than for those who have the disease. I hope you will listen very deeply to what I want to tell you. Listen to this with your heart.

It is ok for you to be angry. It is perfectly normal for you to feel the way you do. There is nothing wrong with you for feeling that way, and you are not a bad person for it. Your life is being turned upside down and shaken up all kinds of ways. You are grieving deeply a very significant loss. Anger is a normal reaction to grief.

But is is vitaly important for your own health and wellbeing to manage that anger, to direct it somewhere in a safe place. Anger turned inward can lead to profound depression, heart problems and all kinds of things. Anger turned outward in inappropriate ways can lead to all kinds of trouble and hurt. When anger is unmanaged it can lead to a hurtful cycle, like a fire that feeds on itself and just gets bigger and bigger. You get angry, you lash out, and that makes you feel guilty and angry at yourself, so you lash out . . . and so forth.

I cannot stress enough the importance of self care for caregivers. A person simply cannot give good care to others unless they are also caring for themself. Caregivers need a lot of support. You can't do it alone.

It sounds as though you do not have a lot of personal support. Your phone doesn't ring. But you have taken a very courageous step in writing a post here. People here are going through what you are going through. They understand the kinds of feelings you are having. They've been there. So this is an excellent place where you can find the support you need.

You might also consider finding a local support network. There may be an Alzheimer's Association or Grief Support Group in your area. Another good resource is a trusted clergyperson, especially one with training in pastoral care. Most pastors, priests or rabbis are very grateful for the opportunity to help you. You don't usually have to be a member of their church or of any church to visit with them. You just call the church office (Monday through Thursday is usually best) and ask to schedule a time to visit with one of the clergypersons. Their support is completely free.

The very best kind of support might be a counselor. I am seeing a counselor to help me deal with my own issues as a person in the early stages of LBD.

Take care of yourself. Be kind to yourself. Only then can you provide good care to your loved one.

Grace and peace,

Randy


Wed Jul 11, 2007 1:07 pm
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Post Re: behavioral
patgl wrote:
some one please talk to me....no one comes around lately and the phone just dont ring...
patgl :cry: :cry: :(


Dear Patgl,
I would like to welcome you to the LBD forums, sorry you have the need to be here but I am glad there is a place like this that people can come to.
The one thing I learned in caregiving also being as angry as you are, once I could place the blame of LBD and not my husband things for me turned around, no my husband didn't get better, in fact has since passed but it helped me to help him in ways I couldn't with the anger I was feeling all the time I too swore he was playing head games with me in the beginning, just be patient with him and yourself, I use to say when my children were small they didn't come with a manual well the same applies here, LBD doesn't come with one either. Be kind to you and make sure you are able to step away as often as possible, it will make you a more patient person and will keep your health in order, Caregiving is very hard on the caregiver mentally, physically and your health is so very important because without it you can't be a caregiver!
Good Luck! We are all here for you and I hope you visit often. :)


Wed Jul 11, 2007 7:21 pm

Joined: Thu Jun 28, 2007 12:32 pm
Posts: 9
Location: Knoxville, TN
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Dear Patgl,

Hello and welcome. I really understand what you are going through as well. My mother has been diagnosed w/LBD for about 6 or7 months. As I get more aquainted with the symtoms, I wonder how long she's really had it. I get so aggravated at her...She sees and hears things that aren't there. And she hears everything wrong, totally wrong. Also so much other stuff, like a disregard for her safety, etc. I know it is this disease, but sometimes I'm really rude to her and then I feel bad. I also don't have many ways to "vent", or much support either, but this group has let me know that I am not alone and neither are you. Please don't blame yourself for what you are feeling. I know it is hard. And I really don't have any encouraging words other than you are not alone in this, and you have a friend if you need one! :wink:

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-Christy
Thanks for listening!
If you need a friend, please don't hesitate to write.


Wed Jul 11, 2007 10:46 pm
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Joined: Wed May 30, 2007 12:09 pm
Posts: 114
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My situation is similar to Christy's. My mother has been DXed for about 6 months but I am sure she's had it for years, at least 2.

The first 2 months after DX if you looked at me I cried. I felt angry, furious, afraid and depressed. Thought it was unfair to be in this situation. I hurt for my mother and MYSELF, for my whole family! I wasn't ready to be a caregiver, not yet! All those feelings are too much to handle at one time.

In our family we have 2 to care for. A mother with LBD and a father with Parkinsons D. They are both very fragile.

I well understand the feelings expressed here.

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#1daughter

Caregiver to 84yr. mother w/LBD & 83yr. dad w/PD


Thu Jul 12, 2007 12:28 am
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Joined: Tue May 08, 2007 8:10 pm
Posts: 27
Location: NEW YORK
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Hello Patgl, sorry you have had to find yourself on this journey. Im new to posting, but the insight that i have gotten from reading others experiences thru this last 8 months have help tremendously! I turned to it tonite as now it is after midnite our time and going on 3 hours of trying to get my mom to settle. She thinks I am a stranger in her house. She doesnt understand why I have come into her house and refuses to go to sleep or take her meds until i leave. In reality, she has been living with us since Oct. and trying to find creative ways to calm her and let her know im her to keep her safe is challenging and exhausting. So far there have not been alot of these kinds of nites, but when there is it is hard to have patience. Sometimes I just walk away for a few minutes and take a breath. It is hard to remember that it is the disease when you are in the heat of the moment. Hang in there and dont be afraid to ask for support from others, reach out to your local alzh association, ask your doctor for information. You are not alone!

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Hanging on


Thu Jul 12, 2007 12:33 am
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Joined: Thu Jun 21, 2007 11:31 am
Posts: 9
Location: alberta canada
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ericSEA

Thank-you for your kind post... I havn't had a good cry about this situation with my LO, but the relief I feel today is really something.

To know that you know what the dizzying cycle is like each day; well it has given me something to hold on to.

My adult kids live far away, and the folks around here just look at my Bill and then at me....""like whats the problem lady""...

Im so glad to be in the loop with the lewy buddies; because you know im not making it all up..

a councillor from my local alz office called me and we will meet with her next tues. the next support group is in sept.

im so glad to have this forum.......thanks for being here..... :D :D :D

patgl

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patgl

.."carry us thru this valley, "..


Thu Jul 12, 2007 1:30 pm
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Joined: Thu Jun 21, 2007 11:31 am
Posts: 9
Location: alberta canada
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rwgraves

Thanks for the good advice, i have printed your post and others so i can keep a file for myself and just sit and read when i feel overwhelmed.

have a good day randy;


Bless You... :wink:

patgl[/b]

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patgl

.."carry us thru this valley, "..


Thu Jul 12, 2007 1:40 pm
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Joined: Thu Jun 21, 2007 11:31 am
Posts: 9
Location: alberta canada
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dear lewy buddies; thanks for the very warm welcome; and well needed advice.. im so happy to have found the forum, and i hope i can be helpful to you in turn. bless you all

my LO is in the day hospital program here two days a week. mon and thurs. so i feel very fortunate to have that much given to me at this early stage... it can be increased as the doc feels it is necessary in future.

i am also in touch with my local azd support people...who are welcoming us to their group in sept.

:) :? :? till next time patgl

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patgl

.."carry us thru this valley, "..


Thu Jul 12, 2007 1:51 pm
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