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 Just hang on! 
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Just hang on!
Do you ever feel like throwing up your hands and going ANYWHERE, anywhere they aren't. Our day started at midnight and Frank is back thinking that I'm running around. Today he never let up with the comments, he had a few vulgar remarks, I'd love to have told him where to go and leave the house. You can't get mad at them, you can't leave them, you're just trapped. I'd take cancer anyday. Sorry, just had to vent. Tomorrow will be a better day :(
Take Care, Gerry


Mon Jul 27, 2009 7:05 pm
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Joined: Tue Oct 16, 2007 11:27 pm
Posts: 84
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Hi Gerry,

Every day lately I feel like running away. It just seems that the bad days are starting to out weight the good ones. I to have been accused by my LO of running around. Last week before he went to bed at 8:00 he wanted to know if I was going to have another party like I have been having every night when he goes to bed. I have to laugh at some of the things he comes out with but I see my patience is running short as of lately. I keep saying I feel sorry for him, he didn't ask for this disease, but then on the flip side neither did I. :cry: These were suppose to be our good years together to retire and travel and enjoy life, well it doesn't always go as we want. It can be a very lonely existance for the caregivers. I sometimes ask myself why I loose patience with him, but then after having to do everything alone from yard work to house cleaning to pee patrole and exisiting only for them I guess I kinda feel sorry for myself. So I know where you are coming from as I think the majority of us who participate in this forum do. :cry:

B


Mon Jul 27, 2009 7:30 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Yup, sometimes it just all sucks. It would be easier if we didn't love them so intensely. Hating this (and sometimes them) just goes to prove we're human. Meanwhile, drug 'em! :wink: Seriously ... is your LO's physician aware of this level of agitation/anger? Is your LO on any medications to help with delusions, combativeness or high anxiety? If not, be sure to explore this with them. Klonazepam, in our case, works wonders when Jerome is really over-agitated.

Good luck to us ALL!

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Renata (and Jerome-in-Heaven)


Mon Jul 27, 2009 9:13 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Well ladies,
I am here to tell you this too shall pass, I understand only to well what you are each feeling and Renata your are correct, it has to do with our love for them that we keep going.

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Irene Selak


Mon Jul 27, 2009 9:28 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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In CA, the medical marijuana shops have been closed time and again by the DEA. It's a problem...


Mon Jul 27, 2009 10:02 pm
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Joined: Sun Jan 11, 2009 8:17 pm
Posts: 104
Location: Arkansas
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It must be in the air. Mom just changed last night at bed time. She's been weak and tired for weeks now, than last night she didn't sleep most of the night and talked endlessly.She was fairly articulate, but crazy, wanting me to check on a snake ,people and kids. Like someone mentioned before, when mom gets like this she is physically noticeable better. Walking better,speaking loader, eating faster. It's like one part of the brain click off and than other part clicks on. I'm only one day into this phase and I was already impaitent tonight as she wouldn't take meds. and did the opposite of everything I was trying to help her do. What's next!
I feel for all of you. Laurie


Mon Jul 27, 2009 10:13 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Interesting we are all going through these magnified symptoms at this time...full moon or what??? They increased my LOs Seroquel to double what he was taking to try to get the combative, aggressive symptoms under control. Worked the first two days...slept a lot...then it reversed and he was up at 6 a.m. 3 days in a row.

I hear all of you and agree....it stinks!

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Dianne C.


Tue Jul 28, 2009 2:48 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Renata, Frank is on the 9.5 Exelon Patch and 5mg Zyprexz. I emailed his psychiatrist about the sleepless nights and he told me to give him a gabapentin, 100mg at bedtime. He had been on the gabapentin 400, 300, and 100mg but had no problem sleeping so the Dr said stop it, that was mid May and since we've had 5-6 all nighters. We have an appointment on Monday and I hope that he'll make some changes.

Thank you to everyone, down deep I know this is not "Frank" but not being able to make him realize how he hurts me is difficult, because he honestly feels everything that happens is my fault and I've asked for it. Such a sad existence for all of us, and for our loved ones.

A new day and it's 7:10 AM and Frank's still sleeping, only positive thoughts. :D

Take Care, Gerry


Tue Jul 28, 2009 7:09 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Same here. Its all my fault...everything is my fault...I can't get the shoes on easily, shower him right, help him get seated to eat right, walk...all my fault. One day I asked him: are you trying to give me a persecution complex or what??? :lol: But every rare once in a while the glimmer is still there... though each time farther and farther inbetween..masked by the Lewys....arm around the waist...peck on the cheek...thank you...makes it all worthwhile. The love is still there...in there...somewhere...but there. The love we have for them is the reason we do this....in sickness and in health...we love them.

...

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Dianne C.


Tue Jul 28, 2009 10:08 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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mm-

Exactly what I mean...is the grieving happening now? When there is no communication or response? I have to believe the DO is aware of your profound love for him and is blanketed in those feelings...making this easier on him. He may not be able to respond back but somewhere in there....he knows...and you know he would tell you if he could.

You've been on a long, wearing journey in Lewyland. Tired of these pessimistic glum days. Caregiver burnout, tired, weary...you've done it all...and beautifully, with grace and dignity.
Look in that mirror tomorrow morning...and see the face of someone who gave her "all" to her LO. And...give yourself a great big smile, wrap your arms around yourself and give yourself a good hug. Then go do something for you!

Both of you are in my thoughts and prayers, daily.

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Dianne C.


Tue Jul 28, 2009 4:06 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Looking forward to it...don't know how disorderly we will get ...don't want to have to bail you out :lol: But we will certainly have great conversations and lots of laughs.
Keep hanging in there...you are doing great. Give yourself a good pat on the back.

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Dianne C.


Tue Jul 28, 2009 5:32 pm
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Joined: Thu Jul 03, 2008 11:05 am
Posts: 150
Location: Raleigh, NC
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To one and all:

May the Force be with you. And damn the Force for letting this happen to you, your loved ones, and all of us in Lewyland.

We're going to try reducing Mother's already-low dose of Risperdal to see if it lessens some of her non-psychotic symptoms, but we'll have to boost it right back up if she becomes combative again.

One thing I noticed after she moved into a dementia facility (when we could still tell what she was saying): I became (in her eyes) myself again and not the focus of her paranoid delusions. Somehow I think seeing me less often helped.

Or maybe it was just that I got some sleep every once in a while.

Take care, all.

Garnet


Tue Jul 28, 2009 7:14 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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I do believe we 24/7 caregivers get the brunt of things as we are there...24/7. The closest and nearest are the easiest to thrust your anger on.

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Dianne C.


Tue Jul 28, 2009 7:43 pm
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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We're back into the no sleep again- 2 days and she has slept about 5 hrs total so I'm sleeping typing this AM :-) need to either drug her so she'll sleep or me so I don't need sleep
Sharon

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syt


Wed Jul 29, 2009 7:52 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Isn't it amazing that at their ages they can go with so little sleep? And how tiring it is on us...bleary eyed and praying for sleep. I say...do both.

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Dianne C.


Wed Jul 29, 2009 5:16 pm
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