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Working/understanding anger
llee08032
Posted: Saturday, August 1, 2015 9:39 AM
Joined: 5/20/2014
Posts: 4406


Dementia eventually robs the person of the ability to communicate. As communication disintegrates the person's behavior often escalates into anger, extreme sadn...


alz+
Posted: Saturday, August 1, 2015 10:38 AM
Joined: 9/12/2013
Posts: 3549


a man asked on CGvr boards:

So when Grandma yells insults at her grandson and swears and fights with everyone, does she know she is doing it? Does she mean it?

It was mentioned before the idea of ASK US ANYTHING topic/section.

******************

In regard to angry outbursts and name calling from formerly sweet or polite people who now have dementia:

When I was a child I went with my father to visit his mom who was now in bedridden as they called it with what they called senility. We now know it was ALZ. Sweet old Christian Grandma swore at my dad and called him names. He stood in the room listening for awhile and then said very quietly, "It's all right . We'll come back in a little while when you're feeling better." He did not take it personally, he responded with kindness and patience.

That was imprinted on my soul. With what I have learned since taking care of my dad, and now me having ALZ, are three things:

1. Arguing and shaming inflame the already out of control brain.

Responding with quiet, confident energy may not stop a tirade but it is the response to learn, practice and repeat. It preserves everyone's dignity to not take these word personally.

2. Listen to the emotion motivating the words and respond to the need being expressed, usually Big Fear (survival - abandonment issues), Frustration (I cannot get what I need or it is too hard to figure out how to get what I need), and I am unwanted/ignored/hated feelings.

3. The person is overwhelmed with the environment. It is too cluttered, too messy, too loud, too complicated for their brain to process! They call out in hope the Life Guard will hear them and rescue them, where are the Cops? Doesn't anyone know I am drowning here! Help me!

De-stress their environment. Lower the volume. Less is more.


*************************

Once a person is in an all out rage (I described a 4 day rage on road trip to desert 6 months ago) the only thing that would have stopped me was to be left alone for a couple days with my dog. As it happened my daughter showed up at critical moment, I was given some cannabis called Purple Kush, and the rage ended in 2 minutes.

Thinking about this now, I have not had a meltdown since becoming a medical marijuana patient. So in a way I do medicate my rage. Hmn.

*************************

Last thought about yelling vile words at someone I love:

In dementia, the ability to communicate is altered - we all agree on that.

After a certain point our expressions become more metaphor than precise rational words.

It is helpful to remember to listen for the emotion and disregard the words.

If I break my leg and I'm yelling that does not mean to only speak to me about how that must hurt. I also need help.

My guess about the angry Grandma and my own Grandma's verbal butchery is that they are in a high state of anxiety and calling out for help.

It does not make "sense" but I have experienced this state. Like a cornered animal, the brain goes to a primal state and explodes. We do mean to get some one's attention. We do not mean to crush the soul of beloved grandchild. Or a spouse.



alz+
Posted: Saturday, August 1, 2015 10:39 AM
Joined: 9/12/2013
Posts: 3549


what I learned from my own rages and tirades toward my husband when it happened years before I was diagnosed and the year after:

the Big Fear of what was going to happen to me if the person in charge of my life did not understand me was so intense, so over powering, I would just explode. Once a Big Fear was ignored, not soothed, or denied, a rage came from a primal survival mode and I didn't know how to stop it. It was awful.

I did not mean to be so cruel and angry, he just would not understand.

He argued with me - which fanned the flames, and since he felt he was in Reality he was right , that was his focus, making me see he was right, not dealing with my primal life/death fears. He heard words, he did not hear the old Cry For Help.

Gradually I learned how to navigate with an altered brain better, began self talk to soothe myself, "he truly believes he is helping me and I better stop trying to make him see my point of view. He thinks he understands and best to not argue over it. Be grateful he is here at all and keeping us alive."

****************************

One of the few times my father exploded was when my brother came to visit and decided dad should go to day care. He took my Dad to place he had never been, crowded with people he did not know, all chattering, the nurses handling him, pulling him into the activity room, and my dad saw my brother leave.

My dad felt threatened, was emotionally and intellectually overwhelmed, thought he was being taken captive, and fought them off. He was sent back home and banned for his violent behavior.

Is this becoming clear?

My husband and I live in a rural area, our house is small. We both had tons of books. We went to garage sales for a hobby and liked to find treasures, I sold some things on eBay for extra cash.

Now those things suck my energy, I no longer can clean up, let go, divvy up, donate, give away stuff so it is in my way. My vision is small and distorted so this is not just ugly to me but dangerous. If I have not had enough support, attention, loving interactions in a few days that stuff all over increases my frustrations. He sees things differently. Rather than fight or argue I give up.

two worlds clashing? I do think husband gets it, but on his own time, when he is ready. I endure, but I wish he would get a move on cleaning up our living space as my life is passing. Having to wait feels like I do not matter to him.

He says he does care, I believe him. But will he help me have a place to live that makes me more calm, happier, and maybe able to write again?

************************

This is why I am on boards so often. I am trying to assist somebody I will never meet to understand what works, what helps, how to self examine and look for triggers so they can prevent these episodes from becoming somebody's day to day to day to day life of exhaustion and despair.

In that sense the person without dementia will call the shots. All some of us can do is despair or rage or withdraw.


Michael Ellenbogen
Posted: Saturday, August 1, 2015 11:32 AM
Joined: 11/30/2011
Posts: 2654


I know you folks probably want to disown me by now. It has been a very tough few months with the banning and then Saturday I had lost one of my best friends when it comes to advocacy. I may have been a bit harder on folks then usual but it just get under my skin what these folks have no voice.

Back on your subject I personally tend to do a lot of things that I would not have done or listen to just so I don’t make waves. That builds up and creates more anger. It is hard to criticize the one you love because they are failing to do the job or fill in your shoes. In my case I cannot tell if it is part of denial or just thinking it may somehow get better being on autopilot. It almost reminds me of the issue in the news the other day. The pilot calls in for a distress saying he has 5 minutes a fuel left. The tower say to come back in 20 minutes. My god what idiots. Same here eventfully we blow up and so did that pilot when he just went right down. There is now doubt that he did the right thing when you know all the answers. The problem with outlives the answers they think they know are one sided and what they want to believe they are so they can feel like they are living at peace. But at whose expense?

It reminds me about this caregiver I spoke with a few day. Her husband had passed from AD. Her husband cam up stairs to wake her up. He said you really need to see the what was on the TV. She said yes and went back to sleep. He did this two more time over a few hours an just went back to sleep. The fourth time she final went to see just to make him happy. That was the day of 9/11. So the point is we all have stores to tell we just may not know ho but there is some truth to what we may say out of are confused mind.


GwenD
Posted: Saturday, August 1, 2015 12:49 PM
Joined: 11/27/2014
Posts: 88


I find I have a short fuse and get impatient. This is completely out of character for me. My husband steps back, because he gets the brunt of it, steps back and gives me a look. At first he didn't know what to make of it, are you have a bad day, well no this is a day like every other day.

It's like when I want to say something and I forget mid sentence I say "it's gone"

alz+
Posted: Saturday, August 1, 2015 1:57 PM
Joined: 9/12/2013
Posts: 3549


Richard Taylor was someone Michael knew? It is so wonderful to find people rethinking this illness and working to share knowledge for years - and I am just finding them!

We seem to report getting most angry at our CGvrs.

1. they are in front of us

2. they represent our Life Line

3. they have power to do what they want with us (in my mind some days!)

4. we feel we are speaking plainly, frustrating to have to argue with someone about not helping us when they think they ARE helping us

5. Frustration at losing abilities more and more

6. want to enjoy today but not in a context of becoming progressively homebound (as in What Ever Happened To Baby Jane?)

7. I have o idea what I'm talking about right now

8. thank you for letting think I know what I'm talking about

9. stay out of jail

10. we yell at them because maybe they are hard of hearing.

How do you make the type face read larger using the A A A ?


llee08032
Posted: Monday, August 3, 2015 7:23 AM
Joined: 5/20/2014
Posts: 4406


Michael,

You have been through hell and high water the past months! Thank you for all you have gone through in speaking up for us! I am sorry for the loss of your friend Richard.

No one wants to disown you and we very much enjoy having you back on the board.

alz+ great posts! LISTEN to the NEED from the emotion being expressed. Ignore the cursing and pull from the communication the NEED. You must LISTEN and not ignore the NEED. If you ignore the NEED you will get more anger. Think of anger as an emotion, the emotion of an unmet NEED.

Paul Hornback
Posted: Monday, August 3, 2015 2:26 PM
Joined: 8/9/2013
Posts: 584


Great post by everyone on this topic. I work hard to control any anger issues. I usually just get frustrated with myself rather than at others. I am grateful that this is how I function at this point.

God bless, Paul


The_Sun_Still_Rises
Posted: Monday, August 3, 2015 4:45 PM
Joined: 7/24/2015
Posts: 3020


Yes, very great posts about this.

I don't think I am quite there yet...but I feel it coming. My daughter has a baby, the baby is still small, and so there are many undone things...and stuff left out...and there is just this *feeling* inside me that I don't recognize.

The best words I have is that I just need everyone (in my world) to do just what they are supposed to do, the way they are supposed to do it. And when they don't...I sort of just want to shove a metaphorical box down around them to keep them in their boxes.

It must be frustration at my inability to make life work, and inability to communicate well enough...fear because things I need done are not getting done and what it might mean if say I cannot schedule an appointment.

Something in me wants to get out. I think one day it will come out sounding like anger...but it is not anger.

Maybe it is a plea to make this horrible brain dysfunction stop and restore things the way they once were.

Eventually I will call that *feeling* rage...but to me it seems like some other feeling.

Maybe someone should write a book or start a class on How To Cope With Caregivers???

Alz+...even if you cannot get the whole environment as peaceful as you would like, maybe a picture of a scene you find serene or tranquil? Maybe a corner desk that is yours? I am planning on making a binder for when I get overwhelmed of scenes that bring me to a place of peace.


llee08032
Posted: Tuesday, August 4, 2015 7:17 AM
Joined: 5/20/2014
Posts: 4406


Maybe someone should write a book or start a class on How To Cope With Caregivers???

Yes! Too many books have been written about how to cope with us!

alz+
Posted: Tuesday, August 4, 2015 7:42 AM
Joined: 9/12/2013
Posts: 3549


there is a power difference between Caregiver and PWD (person with dementia)

I have no one else to take me in, my husband has total control. If I am anxious because of undone repairs in house or anxious being made to wait for him to make calls or find repair people to come before winter (never mind I have been waiting for years for some of this stuff that would improve my life) there is nothing I can do with my anxiety except have a stroke and give up trying completely.

His life has changed too, but he can leave at any time. We all deserve respect and kindness, the one factor that generates higher anxiety is the power differential.

I am not interested in coaching someone to learn how giving of oneself opens the world for giver and receiver. My kids (in 40's) call about once every 4 months. My friends have died off in past 4 years. He is all I have to turn to.

Remember the story about the man who got himself a girlfriend and brought her into his home to care for his wife who had ALZ?

https://www.psychologytoday.com/blog/contemplating-divorce/201011/dating-someone-while-married-spouse-alzheimer-s-disease

there is no loneliness like living with someone who does not care. The luxury of living alone is gone. The fundamental fear is knowledge of no alternative to what I am given.


llee08032
Posted: Wednesday, August 5, 2015 5:01 AM
Joined: 5/20/2014
Posts: 4406


The power differential and giving up control has to be one of the greater difficulties of this disease. I didn't like that article and I felt the husband was dishonoring his wife. That he should have divorced her and turned her care over to someone else. I'd rather be in an institution than live under such circumstances.
The_Sun_Still_Rises
Posted: Wednesday, August 5, 2015 6:42 AM
Joined: 7/24/2015
Posts: 3020


I have been reading the book, Dancing With Dementia, by Christine Bryden and somewhere near the middle she describes what it is like to live with dementia...I keep thinking, "yes...yes...yes, that is exactly what it is like!" It might be a valuable read for caregivers.

I have only my young daughter, who isn't quite ready...and I am not ready to give up control even though it would be a tremendous relief to. I think part of the problem is how to deal with others not doing it the way we need them to do it.

I also get ILS (Independent Living Skills) services...although they historically have not been very helpful. When every daily became a stressful challenge, I really began pushing them...they said to get tested so they could help me better...and then said they couldn't help. Fired them, waiting for new ones...and hoping to get them started better from the get go.

It is hard, I think, because we don't necessarily look like we are struggling. And, because we can think and talk. I think it is just very hard for another to know what it is like. Like, I am pretty sure my daughter really wants to be helpful...but that it is taking her so long is...I don't even know the word...it makes me feel like I am coming apart. It is like I forget how to show someone what to do...how to say it in a way they get it...how to help them help me. What can one do, but withdraw a bit?

I think I might copy a part for that book for them to read.