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 Anger and Frustration 
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Anger and Frustration
I am having issues dealing with Anger and Frustration…fuse is becoming shorter…still able to snuff out the fuse

Do these issues show up as part of the early progression of the disease? From the disease?

I know these can come from issues such as depression, also….and this could be primary cause or a secondary issue from the underlying disease….

If you noticed Anger and Frustration in early stages and some treatment helped…what treatments were effective?

I was dx with a secondary issue and prescribed Welbutrin…have not started this prescription yet…doctor is aware of this…has Welbutrin been effective for this?

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Fri Apr 01, 2011 11:48 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Anger and Frustration
BC, this is just my own personal take ... but why the heck wouldn't you be angry? You've been handed a diagnosis that is going to change the rest of your life, your relationship to people you love, and your independence. You did nothing to deserve this or to bring it on. Are you supposed to be happy? Yes, I know, there are things you can do to mitigate some of the symptoms, you will most likely grow in a profoundly loving relationship that you've never experienced before. It is not all bleak. You are in excellent medical hands. Your situation is more hopeful than many. But doggone it, that doesn't mean you can't be mad! Personally, I think it is OK to admit your frustration and your anger. And then move on, of course. You don't want to waste the rest of your life on anger. But I think that anger is one of the normal stages of grief, isn't it? I certainly went through anger at my husband's diagnosis. (Not at him, of course. But it erupted in irrational ways.)

Coy is a very mellow guy. He had uncharacteristic anger at the beginning of the disease. He seems to have none now -- he is his laid-back self. I don't know whether that is a stage of grief he was going through or his medications have relieved the anger.

Coy has been on Welbutrin for several years. He started it after a head injury, years before lbd. I felt that it gave me back my husband, it was that effective! But in his case it was not about anger.

I am very glad for you that you are still able to snuff out the fuse, as you say, if that means you can stop yourself from inappropriate expressions of the anger. But feel free to vent here. You are among friends who understand.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Apr 02, 2011 12:32 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Anger and Frustration
Anger certainly is a component of depression. Being on a medication that helps to level mood is a good thing. My husband was always highly irritable and had a gtendency to fly off the handle at little things. Finally getting him on an antidepressant (In his case, fluoxetine) helped to restore his sense of well being, his sense of humor, and was healing in his realtionship to me and others.

As his disease has progressed...he is wheelchair bound and in a quite advanced stage...his angry episodes have increased.

Anger is a component of Lewy. What are you getting angry at? What is your trigger? Are the triggers changing? Are the episodes getting more frequent? When you are angry what is your impulse to do?
Are your episodes grounded in reality?

Lots of questions to ask. In Lewy anger is a tough component to deal with. Are you talking to a Dr. or a therapist about it?

Lots to think about. Take care of yourself, Nan


Sat Apr 02, 2011 2:20 am
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Anger and Frustration
I'm with JeaneG--anger and frustration are perfectly normal reactions in your situation. Doesn't mean you can't pursue meds to help, but don't automatically assume they are symptoms.


Sat Apr 02, 2011 2:50 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Anger and Frustration
BC,
Hi and welcome to the forum, sorry about your diagnosis. I think it's great you're here so early, I believe you will get lots of great hands-on info here, I know I have.
I agree that you have a reason to be angry and frustrated but it sounds as if you are able to keep it in check, good for you. My husband, Ken, is pretty far down the Lewy path now, but early on something we did not catch was the depression he was experiencing, I just assumed his symptoms had something to do with the disease. He is on Zoloft now and has been for almost 2 years. If your doctor recommends it my thoughts would be to give a a chance. I can't say that anger and frustration were really symptoms for Ken, although he was always able to diffuse his anger so I may not have seen it.
Has anyone suggested that you make notes for yourself, for the future in case you may not (at some far-away point) believe everything your wife tells you is for the best? Take care, and remember: One Day At A Time! Sher

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


Sat Apr 02, 2011 7:19 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Anger and Frustration
I received great insight into the anger and frustration that I am having, and that my wife is having.

She has lost her Knight on the White Horse, who can make her life perfect…

and I have lost my Princess…

I have been frustrated that I can no longer reason with my wife about my inability to make her life perfect…and that I 'require' maintenance now…and find it difficult to maintain myself….much less someone else…

Take away Gem…I have been trying to communicate with behaviour….bad behaviour….and it has been returned…

When I have had trouble finding the way to communicate….I was able to find words that should never be said…I have then been able to leave the house when I realize what I am doing….

it is hard to talk about this stuff…but, hey…all of this is hard stuff…

I have been telling her that I will have to remove myself from location of bad stuff, because I will not live the rest of what I have unhappy, she has thought that I could just change my behaviour…

She is not bad…she is grieving…the problem is she has less time to change than I do….because I unfortunately understand that I can't change…but she can…what a mess I have created….in the past I would have 'fixed' this…I can't fix everything anymore…maybe a few things…this….is not mine to fix….

I was a caregiver for grandparents and parents…part-time…but at the same time as working fulltime, having parttime businesses, and fulltime family….both parents died of cancer….I was holding my Dads hand when he died, I alienated my siblings and my Mother's new husband…when she wanted to die at home…and against everyone else's wishes I found the hospitals office that made that possible….only after making the arrangements with my Mother…Kubler-Ross is one of my all time favorite books….I understand where a caregiver's heart is….I so appreciate you guys on this site….I can't imagine what you are going through…I realize it doesn't end in months….thank all of you for what you do….

I don't know if my wife can face this….I know this happens…those people just won't be on this website…I guess that is what she and me have to find out...

I see there is an Alz office in Knoxville, at the seminar that I went to on Monday at Mayo on LBD caregivers, there was a Alz spokeperson who said that Alz offices provide counseling…dementia specific….but not just Alz, LBD and others….even individual plans….what can you guys suggest? I see on this website there is a LBD support group in Nashville, any suggestions there? You can PM private message me if you have something helpful or post here….I am hoping at some point my wife comes on here to see that there is help here...

I know we need counseling….and we need it now….I can't take this hostile environment….I refuse to

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Wed Apr 06, 2011 11:55 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Anger and Frustration
BC, if there is an Alzheimer's support group for caregivers/families in the area you might ask your wife to attend. Even though they are AD, they also include other dementias. There were several Lewy loved ones in a group I attended in AZ.

_________________
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.


Thu Apr 07, 2011 12:01 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Anger and Frustration
BC, you are right on the money -- you need help in your relationship now, not later. I sympathize with your wife. She is impaired by grief and frustration, too, and probably has little experience to call upon to deal with this. You've been married a relatively short time, and from what you've said there was a lot of stress during that time. This diagnosis hits both of you. There is a reason most of us spouse caregivers think in terms of when "we" got the diagnosis or when "we" tried a certain medication. Lewy strikes both members of a marriage. For her sake as well as yours I hope you can find good counseling and support groups soon.

Coy was never my Knight on a White Horse. He never made my life perfect. But he was my equal partner and we made each other's lives better. The loss of that partnership was a huge, huge grief. We are still equal in worth and value, but we are not equal in capabilities. We can't share decision-making. We can't share household upkeep. We can't take turns with financial chores. To go from having an equal partner to having a dependent is a huge role change. But here is a surprise. We feel closer now than at any time in our 38-year history. We are going through something profound together. It isn't what we asked for or what we expected, but it is the hand we were dealt, and figuring out how to play it together has produced an extraordinary bond.

In time, you might come to terms with this blow on your own. But time is precious now. Counseling, jointly and separately, and support groups, can help speed up getting your relationship into a new balance.

My heart goes out to both of you. I wish you success.

Jeanne

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Apr 07, 2011 12:46 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Anger and Frustration
the knight and princess analogy belong to her…that's her view…I was willing…no longer able…will get help starting in morning…..life sure is happening fast….mayhem without insurance...

when I was at the seminar, they had one caregiver tell her story about taking care of her mother….the moment that touched me the most was when she said that she realized that the world didn't revolve around her anymore…that it revolved around her mother…and the story was so sweet…about how she was getting to know her mother probably as the young woman she once was

I don't want my world to be that way…it isn't that way now…I certainly won't accellerate it in that direction….but, I know now that it will turn out that way, and probably for quite a while

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Thu Apr 07, 2011 1:14 am
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Anger and Frustration
Dear BayouCajun:

YOU are not the problem. YOU have not responded with bad behavior, or fallen off of your white horse. YOU have not "created a mess." YOU cannot, nor ever could, make your wife's or anyone else's life perfect.

The difference here is that you came to this forum and your wife is in denial, whereas the rest of us are the spouses/children of Lewy Patients and, because we are here voluntarily, are by definition, not in denial.

Could you ask your wife to browse and read the postings on this forum? Cheaper than counseling. Tell her, from a spouse's position, it's a *, but you can't wish it away. I have some remorse at my initial reactions/responses and would not wish those feelings on anyone.


Thu Apr 07, 2011 2:29 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Anger and Frustration
BC, I thank you for posting, it gives me a bit of insight of how Frank might be feeling. He is at the point that he couldn't change our living situation, I keep telling him, 49 years ago we said, "for better or worse", we had years of "better" now we need to figure out how to deal with the "worse". This stinks for all of us and both of you, I hope your wife will go to counseling, I think educating yourself on the path of this disease is the only way to understand and get through it. Again, thank you for posting.
Fonldy, Gerry

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


Thu Apr 07, 2011 7:51 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Anger and Frustration
A long time ago, Dale left the house because we had been arguing. He came back about an hour later with a little candle in the shape of a frog. He said.... on bended knee, "No matter how often we kiss, I'll never be a prince."

The realization that we were both 'frogs' who would never magically become prince or princess remained a part of our relationship to the end. It worked for us. (We collected thousands of frogs after that and seven display cases are filled with them.)

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


Thu Apr 07, 2011 8:46 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Anger and Frustration
BC - I also encourage you to do whatever you can to get your wife to read books, pamphlets and postings on this forum re: LBD. Education about this disease is what it sounds like she needs at this point. Then perhaps she will be able to get out of her state of denial and be able to help you through this difficult journey. It will be difficult for her, difficult for you, but I believe it will be less difficult if you can both walk side by side with greater knowledge about this disease. Conflict and misunderstanding is not helpful to your situation, as you know. I hope she'll at least read many of the postings on this forum and see how other spouse caregivers deal with the situation at hand, and see the support we all give one another. All the best to you, 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 Apr 07, 2011 8:51 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Anger and Frustration
Frog…when in Rome….

Yes, I am a frog…thanks for taking the time to post this (everyone else too…) I have been following about Dale…wanted to say something…I guess I just did.

I am looking at my breakfast and the the first phone number to call...

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Thu Apr 07, 2011 10:41 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Anger and Frustration
I am waiting for the return call from Alz assoc for help…I talked to someone...

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Thu Apr 07, 2011 12:55 pm
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