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 Panic attacks/feeling scared/anxiety 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3369
Location: Vermont
Post Re: Panic attacks/feeling scared/anxiety
Thanks for all your support Kate! And, as for your sister, I hope you tell her I was polite, respectful, and trying very hard to work as a team member with these folks. The neuro. was ok, but it turns out (after a letter I received from him yesterday) that he was no longer my dad's dr. as of May 4, since my dad refused to have any more tests. I didn't know the dr. released him from his care back then. The CNP told me she couldn't change meds, that the drs. who prescribed them had to change them. Then no one did anything. My various respectful phone calls and letters went unanswered, except for the neuro, who didn't change the meds either.
So, here's a dilemma for you - if a dr. releases someone from their care, and other med. professionals won't change meds without the original dr's ok, whose responsibility is it to make decisions about changing the meds? Turns out in my dad's case, there was either a lot of "buck passing" or "buck being ignored" despite my best efforts.
Finally, I did have a very heated discussion with the CNP. I cried and was shaking almost uncontrollably for 30 min. while I FINALLY convinced her to change some of his meds. That was AFTER she threatened to sue me! So, I guess you could say it turned into a fight, but not until after I was ignored for 5 months and then bullied in the phone conversation. You gotta do what you gotta do. I almost gave up the fight during that phone conversation, when I got a vision of my poor, decrepit dad, lying day after day in his bed, unable to even pick up the phone to ask for help.
I thought "what if that were me and my kids gave up on me?" I just could not give up trying to help him and know he would never have given up on me if I were in his place. (I also was glad that I had already contacted my own and my dad's attys prior to that call, since I was about to have them write to the health care people saying that, by law, they had to work with the POA - me).
If you are in the position of the health care folks not listening, you might want to advise your attorney about what's going on. You never know what is going to happen and you may need one on your side. I sure didn't expect the threat of a lawsuit, but being able to honestly say I already had attys. on notice that they weren't communicating with me or cooperating, gave me a position of strength, I guess, because that's when she backed down and agreed to change the meds. Keep the faith! 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.


Thu Sep 16, 2010 4:20 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Panic attacks/feeling scared/anxiety
I just received the second book the Whitworth's have written yesterday and it is a caregivers guide and I have only gone through about 60 pages and I read last night how caregivers should be team members with the medical people overseeing their LO!

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Irene Selak


Thu Sep 16, 2010 5:59 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3369
Location: Vermont
Post Re: Panic attacks/feeling scared/anxiety
Interesting concept, huh?! I have always had that sort of relationship with health care professionals, until my dad moved to the town where he is now in ALF. Ironically, one of the things I teach/consult is "building highly functioning teams". When there is a power differential and a dr. or CNP doesn't consider family members a part of the team, it is a BIG struggle. I am not used to this sort of philosophy or behavior in a medical community. Makes me really glad I don't live there anymore, and I hope I never need medical care while I am there.

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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.


Thu Sep 16, 2010 6:26 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Panic attacks/feeling scared/anxiety
What is a team, anyway? Is it a group of people who follow a medical professional even if it is over a cliff?

As a project manager, my job is to lead teams of professionals. My job is to cajole, demand, plead and manipulate people into doing their jobs and doing them well. I have found that a team that either follows a leader without question or agrees with each other all of the time may get things done quickly. But are they the right things?

I much prefer a team that questions each other and demands the best of each other. The agreeable team may look good, but the team that challenges its members generally accomplishes more in the long run. Yes, I take a lot of heat over my teams sometimes being less than pretty. But they are considerably more interesting and more accomplished.

The same is true with a medical team. If their decisions and methods can't hold up to scrutiny then how can they dare expect us to go along with them. When someone doesn't want to be questioned, it often has a lot to do with a lack of confidence they have in their own actions.

When it is me, and it likely will be, I will be very grateful for a fighter (the next generation has plenty of them) who will make every effort to be sure my medical directive is followed and the care I receive makes sense to my family, if not to me.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Sep 16, 2010 10:43 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3369
Location: Vermont
Post Re: Panic attacks/feeling scared/anxiety
And you said you weren't a fighter before, Kate? You sound like a very strong woman to me and I know you'd do the same for your mom as I've been trying to do for my dad. My parents both taught me to stand up for what I believed in, whether I was in the minority or not. Sometimes those of us who take a stand for what we think is right do seem to ruffle the feathers of those who lack confidence or have huge egos, but at least we can sleep at night knowing we did what we thought was best. Progress is not made by maintaining the status quo.
Have a good night everyone, 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.


Thu Sep 16, 2010 11:06 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Panic attacks/feeling scared/anxiety
To those of you who experience the kind of obstructions faced by Lynn (LCTVT), let me encourage you to keep a log (nothing fancy) of your encounters/communications with the caregivers/doctors/other personnel involved with the welfare of your LO.

Gail


Fri Sep 17, 2010 3:45 am
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Panic attacks/feeling scared/anxiety
Oops, sorry Lynn, it's LTCVT. Maybe my brain resisted the LTC part, as in Long Term Care.

Are you painting through all of this? Super-stress stimulate some and inhibit others. Moi? Waiting for the muse.

Gail


Fri Sep 17, 2010 3:53 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3369
Location: Vermont
Post Re: Panic attacks/feeling scared/anxiety
Funny coincidence, huh Gail? My initials are LTC. LOL!
Not getting much painting done at all this summer. Between traveling to MD, dealing with med. people for my dad when I'm back home too, and then having been sick for almost a month myself, my painting is suffering BIG TIME. Trying to get back into it now. At least I did get to visit my son in WY last week - that was a much needed vacation. I teach painting, 3 classes starting next week so I better get my head back into over the weekend. Wish me luck! 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 Sep 17, 2010 8:23 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Panic attacks/feeling scared/anxiety
Thanks, Lynn, for the vote of confidence. We, too, were brought up to stand for what is right, even if it is not popular. My sisters are all very strong, each in her own way. Sometimes I just don't feel quite as strong as the other three, usually when I'm tired.

As Mom would say, I come from a long line of tough old birds. (She got that saying from her mother.)

I keep a quote of Maggie Kuhn's (Gray Panthers founder) over my desk:
"Speak your mind, even if your voice shakes."

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Sat Sep 18, 2010 7:28 am
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Joined: Mon Oct 05, 2009 12:30 pm
Posts: 17
Location: Philadelphia
Post Re: Panic attacks/feeling scared/anxiety
I wish to thank all for their comments regarding my mother's anxiety. Seroquel and Zoloft were both previously tried without any success. As noted, we are trying Trazodone now, which is pretty far down the list of recommended medications. However, we'll keep at it and if that doesn't work, look for something else.

The doctors are adequate, but seem to have no ideas. I agree that it is often necessary to push them.

Thanks again!


Sun Sep 19, 2010 2:40 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Panic attacks/feeling scared/anxiety
I hope the Trazadone helps, it did in our case, helped my husband sleep better and not be so anxious at bedtime!

Good Luck!

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Irene Selak


Sun Sep 19, 2010 8:48 am
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Joined: Thu Sep 02, 2010 10:16 pm
Posts: 3
Post Re: Panic attacks/feeling scared/anxiety
We stumbled across something this week that may help. I have had Steve at the ER this past week twice. Once for a fall and the other for a migraine. Remind you, we are just starting to get his meds regulated. But to the point. Steve got extremely aggitated, panicky and wanting to wander while we were there. I was fortunate to have the same ER dr. while we were there. He tried Compazine to settle him and it worked. I have found its used for many things. I contacted Steve's dr, and she hesitated the use of this drug, but it worked. I am far from understanding this stuff and far from knowing what should and should not be done. But I figured it was worth mentioning.

At home his panic attacks do worsen at night. We are using Klonopin at home 1mg 2xDay. The anxiety attacks are something we have dealt with for sometime. We chalked them up to his high demand job before the diagnosis. But now not to sure. When he has an attack and we are not due for meds, I light candles, soft music, and quiet time in our room, this helps with reassuring talk.

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Stacy 37 caring for Steve 51--married in 2009 together since 2000


Mon Sep 20, 2010 9:20 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Panic attacks/feeling scared/anxiety
Compazine is an anticholinergic which is usually not recommended for LBD but, like everything else, subject to individual response. Glad it worked for your LO.

_________________
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.


Mon Sep 20, 2010 9:53 am
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Joined: Sun Sep 05, 2010 4:46 pm
Posts: 29
Post Re: Panic attacks/feeling scared/anxiety
Kate,
Is she on Mirapex? When my Mom got off that the hallucinations left. Paronia is not quite as bad but it is still alive & well.

Gayle


Wed Oct 06, 2010 9:39 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Panic attacks/feeling scared/anxiety
Stacy,
I like the non-pharmacological stuff you are doing when you sense a panic attack coming on. I understand why your husband's MD is hesitant about compazine. Have you considered higher doses of Klonopin for the anxiety attacks? Or Ativan?
Robin


Wed Oct 06, 2010 11:26 pm
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