View unanswered posts | View active topics It is currently Fri Nov 28, 2014 8:15 pm



Reply to topic  [ 46 posts ]  Go to page 1, 2, 3, 4  Next
 Excruciating Anxiety 
Author Message

Joined: Mon Oct 05, 2009 12:30 pm
Posts: 17
Location: Philadelphia
Post Excruciating Anxiety
I am sharing our story in an effort to determine (1) if you or anyone else has experienced a similar situation and (2) if so, have you found anything at all that has helped.

My mother has an extremely vicious form of what has tentatively been diagnosed as Dementia with Lewey Bodies. My brother has taken care of her 24, 7 for the past three years with virtually no relief (for him or her).

Her disease is marked by overwhelming and all-encompassing anxiety and depression far beyond what is typical for this disease, based on what I have read. No doctor or medicine has been much help. She moans, cries out, shouts things like: "God hates me!" "Why must I suffer?” “Help me, please!”, and calls on her mother (deceased over 50 years) to come save her. This is most of the time.

She is only really quiet when she seems to forget the disease exists and is absorbed in some generally deluded thought. Mostly, despite her cognitive deficits, she knows what is happening to her and can't accept it.

Her memory can be terrible (I.e. thinks my father and her mother are still alive and demands we get them for her), and repeats questions hundreds of times in a day. But then she will sometimes turn around and show great perception about her situation and/or clear-thinking knowledge about the past.

People tell us "oh just put her in front of the TV." They don't believe it when we say "there is no TV. She does nothing other than suffer." (At one time, my brother was with great effort able to get her out to eat. Now she rarely gets dressed.)

My brother will not consider a caregiver because she wants only him (or me) and is terrified of strangers. If he as much as goes out of the room, she thinks she has been deserted. This presents a real Catch-22, because much as she suffers now, a caregiver will send her into a blind panic. But if my brother should wear out, there is no alternative. I cannot do what he does; I have a son and need to work.

That’s the very tip of the tip of the iceberg. Thanks for listening.


Mon Oct 05, 2009 2:30 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Perry,
It doesn't sound like she's on the proper medication regimen. Is she being treated by an LBD-savvy MD? Please check out Boeve's "Continuum" paper on lbda.org and let us know how her pharmacological treatment compares to the 'gold standard."
Robin


Mon Oct 05, 2009 3:49 pm
Profile

Joined: Thu Feb 19, 2009 12:45 am
Posts: 103
Location: St.Paul
Post 
Perry,
So sorry you are going through this. Your brother must be a saint. He definitely needs help - and soon.
Once you get your mother's meds figured out, you need to get your brother some much needed help. The meds should help calm her down and get her to be a bit more accepting of someone else being around her. If you start slow and don't leave while a caregiver is there, she will slowly accept a new person. I had to do that with my husband. He hated it when I would leave and go somewhere without him. He would always tell me he hated the person who was with him and would get mad/angry at me for going. But I had to and he adjusted and I don't listen to him anymore. Can't.
Look at it this way - they are delusional, demented and not themselves at all. They will be that way whether or not you and your brother are there. So, get some respite when needed. Sounds cold and harsh but that is just the way it is. I wish someone had told me that a lot sooner.

I just don't know how your brother has been doing it by himself all this time. Truly amazing. And what a wonderful son he is. Wow. I am impressed.
Best wishes to you and good luck. Keep looking for a good doctor for her. There are meds that help.
Heycon

_________________
In & out of stage 4.


Mon Oct 05, 2009 11:53 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
The easiest way to locate the Boeve Continuum paper is to enter "Boeve Continuum" in the search box on lbda.org. The first item that comes up is the right paper:

41% - Document: Diagnostic Review & Medicine Management of Dementia with Lewy Bodies
This article: Reviews terms associated with DLB and LBD, Reviews which studies are most informative in the diagnostic workup of suspected DLB, …

Otherwise, go to:
lbda.org
Learn About LBD
Additional Resources
CME's
then look for the 2004 Continuum paper by Boeve in the list

Robin


Tue Oct 06, 2009 10:14 am
Profile

Joined: Mon Oct 05, 2009 12:30 pm
Posts: 17
Location: Philadelphia
Post 
heycon wrote:
Perry,
So sorry you are going through this. Your brother must be a saint. He definitely needs help - and soon.
Once you get your mother's meds figured out, you need to get your brother some much needed help. The meds should help calm her down and get her to be a bit more accepting of someone else being around her. If you start slow and don't leave while a caregiver is there, she will slowly accept a new person. I had to do that with my husband. He hated it when I would leave and go somewhere without him. He would always tell me he hated the person who was with him and would get mad/angry at me for going. But I had to and he adjusted and I don't listen to him anymore. Can't.
Look at it this way - they are delusional, demented and not themselves at all. They will be that way whether or not you and your brother are there. So, get some respite when needed. Sounds cold and harsh but that is just the way it is. I wish someone had told me that a lot sooner.

I just don't know how your brother has been doing it by himself all this time. Truly amazing. And what a wonderful son he is. Wow. I am impressed.
Best wishes to you and good luck. Keep looking for a good doctor for her. There are meds that help.
Heycon


Thanks for your comment. I'm really not sure I'm replying correctly to your message, since I'm new to this process. I didn't mean to make this a private response so I clicked the button that said "reply with quote." Hope I've done this right.

Yes, my brother is a saint and a wonderful son. He can't conceive of leaving my mother when she is suffering. He simply can't stop doing whatever mother seems to want, even though he can't really alleviate her suffering. When I am at my mother's house, he is constantly with her when I am. I have said " it doesn't make sense for both of us to be sitting with mother. Why don't you leave, or at least leave us alone, and go out, get a coffee?" He looks at me like I am insane and at times has even gotten mad.

She was a wonderful mother. Always, always, always there.He feels he owes her this devotion, and he's probably right. But he is killing himself.

We have only tried a caregiver once and my mother was in turns resistant, terrified, aggressive, and filled with her on-going excruciating anxiety. My brother also says no caregiver could handle mother''s behavior and I 99% believe him. So I don't bring any of this up to him anymore.

Now on to meds. Though we have been uncertain about her doctors, they have tried many of the traditional drugs on her ---SSRI's, tricylics, etc. --- all with no success. Her history suggests that pharmacological approaches don't work on her depression. She has always needed ECT in the past to get over depression. At the very beginning of all of this two rounds of ECT didn't work, which was the tip-off that more than just depression was happening.

Robin has referred me to the paper callled Continuum which provides a great deal of information on drug therapies. It looks like most of them have been tried, but after I read it more thoroughly, I'll see if there's anything else there that holds any promise.

Finally, I wonder if you or anyone else might possibly know of doctors in Philadelphia who are LB specialists. We have gone to supposedly top people in the field in Philadelphia and have not been overwhelmed.

Thank you again for your help. Do you recommend we also leave these messages on other forums?


Wed Oct 07, 2009 2:40 am
Profile

Joined: Mon Oct 05, 2009 12:30 pm
Posts: 17
Location: Philadelphia
Post 
robin wrote:
The easiest way to locate the Boeve Continuum paper is to enter "Boeve Continuum" in the search box on lbda.org. The first item that comes up is the right paper:

41% - Document: Diagnostic Review & Medicine Management of Dementia with Lewy Bodies
This article: Reviews terms associated with DLB and LBD, Reviews which studies are most informative in the diagnostic workup of suspected DLB, …

Otherwise, go to:
lbda.org
Learn About LBD
Additional Resources
CME's
then look for the 2004 Continuum paper by Boeve in the list

Robin


Thanks again, Robin. I was looking at the wrong paper, but have now found the one you referenced. At first blush it looks like all the medications listed have been tried but I'll review with my brother.

Hard to make a comparison with the gold standard since she has at times been on so many of these. Also currently she is not on any type of anti-depressant, just aricept, and ativan for short-term relief of anxiety. She has been on ativan for 2 1/2 years, probably not a good situation in and of itself.

My mother's history suggests that pharmacological approaches don't work on her depression. She has always needed ECT in the past to get over depression. At the very beginning of all of this, two rounds of ECT didn't work, which was the tip-off that more than just depression was operative.

Finally, do you by any chance know of LB specialists in the Philadelphia area we could contact. Perhaps there is someone more state of the art here than those we have utilized.

Thanks again, Robin


Wed Oct 07, 2009 2:48 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Someone else posted in the last year about LBD specialists in Philly. Please do a search of past posts. There's a "Search" command at the top of the page.

No need to select "reply with quote" each time you reply. If you address your comments to "Dear Robin" or "Dear Heycon," we can figure out what text you are commenting on.


Wed Oct 07, 2009 9:39 am
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Dear Perry,
Welcome, sorry for the need of being here, LBD can be a very frustrating disease for not only the person DX'ed but for the entire family, you already have been given some great advice so I won't repeat but one suggestion I would like to make is about another caregiver, perhaps if one is introduced slowly with your Brother there your Mom may begin to trust more. Your brother has to find a better way or he will burn out and like you already said you can't do what he is doing ! Good Luck!

_________________
Irene Selak


Wed Oct 07, 2009 10:36 am
Profile WWW

Joined: Mon Oct 05, 2009 12:30 pm
Posts: 17
Location: Philadelphia
Post Debilitating Anxiety
Irene,

Still not sure I am posting these comments properly so they can be seen by all. Hope I'm getting closer.

I guess I have a few continuing goals that have prompted me to join this on-line community. (That and the fact I didn't know about it before.) These are:

On-going Treatment. My mother has been treated by a number of doctors who have excellent reputations in the Philadelphia area. Most are associated with the University of PA, one with Thomas Jefferson University. Not a slacker in the group, so to speak. Yet in our experience, they ran the gamut from poor to average at best . Some tended to "mail it in" and others were just poor communicators. Several couldn't seem to spot dementia if it had searchlights focused on it. One doctor did diagnose DLB and made some attempts to deal with it. But no where present was any doctor practicing the collaborative treatment approach described so frequently in DLB materials.

Although often in a helter skelter fashion, my mother did try a wide variety of drugs in treatment with these doctors, mostly in attempts to calm her anxiety. None have worked. Given her continuing crushing anxiety, we have to keep looking for ways that may yet work. And maybe keep looking for a doctor with the right or a better approach --- in Philadelphia or elsewhere. Okay, any ideas here?

Care-giving. As my mother''s 24/7 caregiver, my brother says "you couldn't pay someone half a million dollars a year to do this job." He is referring to her rampant anxiety, constant repeating, non-stop pacing, inability to do or enjoy anything, and her awareness of same, and on and on. He's mostly right; this job wouldn't be for a caregiver who expects to wheel her patient to the park while instant messaging and read to her every afternoon at 4:00. But somewhere, even if not through traditional agencies, there must be caregivers who could handle this kind of a stressful job . Does anybody have any experience trying to find "super-caregivers?" Do such exist outside the scope of normal care-giving agencies?

And there's a second piece to the caregiving situation. My mother adamantly doesn't want it. And my brother is incapable of doing anything that he perceives might hurt her in any way. So while everyone's advice is to start seguing in a caregiver baby-step by baby-step while my brother remains standing by, there's one problem. He won't do it. (No question it would be an agonizing process, but it's all academic; he won't do it.)

I don't expect anyone to have any ideas on this one.

Thanks, Irene.


Sun Oct 11, 2009 4:19 pm
Profile

Joined: Sat Jan 31, 2009 7:21 pm
Posts: 172
Location: Ohio
Post 
I'm so sorry you have to be here, but I do think I may be a tad helpful. I know there was someone here who posted back a few months ago (a spouse, I believe) who found a very good dr. either in Philadelphia or Delaware. I'm unable to recall exactly, but being familiar with the area, I feel inclined to say that I believe it was HUP that he found a good dr. Just not sure. I'm hoping someone here will remember. Is it possible to do a search perhaps for Philadelphia? Just a thought. Good luck. Dee


Sun Oct 11, 2009 4:57 pm
Profile

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 758
Location: LA
Post He won't do it!!!
So frustrating, isn't it? Many doctors know they can't "fix it" so they go on to others they can fix. Long ago my eyes pleaded with our primary care physician as I asked him to try to make Mr. B. like he used to be and he told me straight, "I can't do it", however he has walked the walk with me, guiding me towards specialists, helped with proper meds so I can care for him at our home, with me promising to let him know if violence occures.

Our four children rallied around, knowing that I would do the same thing your brother is doing because I can't do any thing different. I just can't. He's mine.. its as simple as that. Our children then decided, "Okay, Mother, if you are determined to care for him, we will care for you". And care for me they have! They also do hands on care on the week-ends with promise for more as things progress. I have put together a great team... it is not easy... and I have listed it several times on this forum. Home Health, VA, Doctors who accept FAXes, pharmacy, PTs, Volunteer Fire Dept., Police, 911 call button, emergency room, social workers, this forum. Of course, I don't use them all at once but over the years since 1997, I have called on them all at one time or another.

A sister in law asked me, "Dot, how long can you do this?". I don't know, it has become a way of life.

Yesterday a daughter needed a little cheering up and she came to our house, another daughter was here and I said, jokingly, "so you came to the Happy House" , dau. added, "Yeah, we laugh whether its funny or not". attitude is everything.

If your brother won't/can't leave your mother in the care of an inept person, accept it [as you seem to have done] and give him all the assistance you can, which you are doing and I applaude you for it. You are two good kids. You will find caregivers/sitters who will watch the video monitor while brother sleeps. He must get refreshed once in a while. It can be melded into the care under his watchful eyes.

Yes, Perry, on this forum, anything you voice out loud, you will find someone else has strong thoughts about the same thing. Hang in there.

Dorthea

_________________
"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Sun Oct 11, 2009 5:10 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Perry,
I have sent you some Physicians in the Philly area, check to see if there are a few that might work better.( In your private e-mail address)

On the note of your brother not allowing any outside help then there isn't much you can do except, be there for him and I know you are!

There are other things caregivers can offer, things like, shopping, cleaning the house that might be a better way of having one.

_________________
Irene Selak


Sun Oct 11, 2009 5:21 pm
Profile WWW

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Post 
Just an off-the-wall thought ... is it possible your brother is being paid to provide caregiving for your mother, and is he afraid that if someone else is brought in to the share the load it will mean a cut in income? That would freak anyone out these days. If that's the issue, is there some way his income could be protected even if you bring another person in?

_________________
Renata (and Jerome-in-Heaven)


Wed Oct 14, 2009 10:41 pm
Profile

Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
Post 
Dorthea- Again...wise advice from a very wise person.
I too didn't want to leave my LO with another person. He didn't want anyone to care for him but me and became agitated and angry if I left him with someone else. At times it became so overwhelming ... I was SO overtired..burned out..lack of sleep..all of the daily and nightly issues, etc. Didn't take the respite care (which now I wish I had). However, as Dorthea said: it became my way of life.
One day VA sent a caregiver who came a few days a week for two hours...he became friends with her (they liked to discuss hockey) She was a blessing. Those two hours were precious to me. Cannot thank her enough. Would I do it again...taking full care of him 24/7..yes! I did it to honor his wishes and out of my deep love for him...helping him to the end.
That said...its taken me almost 2 months since his passing and I still do not feel fully rested. Still grieving and healing. Time will take care of that part.
Perhaps your brother feels as some others do. Put my own life on hold while caring for my LO. Blessings to both of you wonderful children.

_________________
Dianne C.


Sun Oct 18, 2009 12:30 pm
Profile

Joined: Mon Oct 05, 2009 12:30 pm
Posts: 17
Location: Philadelphia
Post 
Everyone,

Thanks for your kind comments. To clarify the situation as best as possible, I want to offer the following:

My brother feels that no one can take care of our mother like he can. He is right about that.

Our mother becomes absolutley panicked if he should so much as leave the room. Even when I am present, she sometimes gets upset and says "Steven is leaving her, he isn't coming back."

We tried a caregiver one time, some months ago. My mother didn't accept her, but one of the problems was that my brother wouldn't relinquish control when she was there. I'm not sure that it would have worked under any circumstances, but it wasn't given a completely fair trial. Eventually my mother became vicious, demanded that the caregiver leave, and even shoved her.

Since then. my brother has not been inclined to try it again, and things have gotten even worse in terms of my mother's terror at the thought of having strangers around or of Steven leaving. Whenever I leave the house to go home (fortunately I get to leave, I can''t begin to fathom how my brother stands it), she gets upset that I am leaving and tries desperately to convince me to stay.

The worse part is, for the most part she knows what is happening to her. I understand this is sometimes the hallmark of DLB as opposed to Alzheimer's. In other words, she suffers. If she were out of it, not cognizent of her surroundings, floating away, etc., this situation would be much more tolerable.

So, the suggestion that we bring in a caregiver and gradually get her accustomed to it, while the absolutely correct advice, is difficult to impossible in our situation. And given my brother's feelings, I don't even bring it up anymore. It's up to him.

That's out story. I wanted to make this clear even though I know there's little anyone can suggest. If she didn't suffer, if she wasn't so afraid of being away from "family," there might be a response. For now, I don't know of one.

Thanks, everyone.


Sun Oct 18, 2009 1:26 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 46 posts ]  Go to page 1, 2, 3, 4  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr