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By Mary556 On 2014.12.18 08:50
My PWP mother is the sweetest, most patient, gentle and unselfish person in the world. Lately she has had several episodes of anger (directed at me, her primary caregiver) at which times she is not herself, at all. During the altered state, her twin talks to me in a sarcastic way and says hurtful things. She refuses to use her walker or take her pills. She pushes me away. It is as if she is acting out a bad dream, trying to defend herself and to take back control of her life.

My mother seems to be fully awake during these episodes, but has no memory of her behavior a short time later. I am so blessed that my Dad is here to hold Mom's hand and talk with her. Usually he is able to calm her. I wish I knew a better way to interact with my PWP when she gets like this. She gets very emotional and unable to reason. Do you have any suggestion?

I know there is a transition time between REM sleep and wakefulness when a PWP may be very disoriented. Do you think that's what we have here?

By carman96 On 2014.12.18 09:29
My husband has increasingly worse outbursts of anger toward me and says things he has never said to me in our 30 years together. It is all about the fact that he can't do anything he used to do, and I am constantly telling him what to do. If I try to let him do what he wants, he inevitability will try to do something dangerous. I try not to take it personally but everyone has a breaking point.
I have tried to divert him but it doesn't help calm him down. I tried him on Seroquel and it was 9 days of living hell.
Now I am giving him one half of a valium in the afternoon instead. We'll see.
Not sure about the REM thing but it could be a factor in your mom's case.
It is good that your Dad can calm her down. The primary caregiver is always the bad guy I guess.
Good luck hope things get better for you and your mom.

By VioletV On 2014.12.18 21:07
Mary, my husband has the experience of that vague period between REM sleep and wakefulness. He can be very insistent about how he sees things, and I have learned to absolutely be neutral and not to try to be "myself" in these encounters. My only goal at that time is to help him stay safe and unworried.

I give him information. Make suggestions. Describe what I see. Reassure him when he is concerned that he doesn't know who he is, or how he got here.

If he tries to do something unsafe I'll say "-- well of course you can, but I am just worried that you might need my arm in case you lose your balance. Or, Sure, let's do that, but do you mind using the urinal first?" Factual, unemotional, calm, friendly but very impersonal. I follow his lead. It takes a toll, emotionally to turn myself into a blank screen, but I just do my best to remind myself that it isn't him - so I might as well not expect to be me in those encounters.

The oddest thing that happened was the time that he woke up and decided that he was fiercely attracted to the woman in bed with him -- that he might see if he have an affair with her -- but then stopped himself because that "wouldn't be fair to my wife."

Good to know that!

He was kind of surprised when he realized that the woman WAS his wife.

What can we do? PD is not our friend, but it REALLY is not the friend of the person who has it.

Hope things work out with your mother.

By Mary556 On 2014.12.19 00:01
Carman and Violet, thanks much for your helpful insights.
Yes, many times my Mom has expressed to me that she does not want to be told what to do all the time. I believe that is at the heart of the matter here as well. It must feel overwhelming for her sometimes. I shadow her 24/7. I am always prompting her.
My mother's recent episodes of anger seem to happen after she has been in a deep sleep. Though she appears to be awake, I believe she must be in some sort of semi-dream state. She is not in control, that is for sure. I know it is not my loved one's choice to do and say these things. It is a blessing that she is unaware, that she does not remember. I am still able to make choices. I do need to learn to be more calm and neutral in these situations.
Love will prevail over Lewy Bodies.

By carman96 On 2014.12.19 10:52
Violet, I admire you for being able to not "be yourself". Most of the time I try not to react, but lately I've been totally stressed and sometimes I just start crying. It's all so sad. He's really hard to calm down.

By carman96 On 2014.12.19 10:58
Mary, if these episodes are right after waking, it probably does have to do with not being totally awake. Sometimes my husband falls asleep watching tv then wakes up and says something really weird. For him though, these are not the times he has angry outbursts.
Everyone is different. Have you talked to her doctor about this?

By Mary556 On 2014.12.19 12:16
Thanks again, Carman. I am the same way. When these episodes happen I start to cry, or else lose patience and ask for an explanation. That just seems to escalate the problem. My PWP's outbursts of anger are a recent development and we haven't talked with her neurologist at this point. I guess I was hoping to figure out what I did to provoke her and to change my ways so it would not happen again. My mother's anger started the week of Thanksgiving. My siblings were home visiting and she had four of us giving her prompts instead of just Mary. My mother does not like prompts. I try to reserve them for when she is really struggling or when she would be in danger of hurting herself if I did not speak up.
I hope it will get better for you and your husband as well.

By carman96 On 2014.12.19 12:33
Mary, sometimes lots of commotion confuses them. I don't think any of us would want a whole bunch of people telling us what to do! Maybe she will settle down a bit after the holidays. Repeat after me: It's not them it's the disease. Don't take it personally.
Let's try to take deep breaths and remain calm.
We are doing what we do out of love, and we are only human.
Good luck with your mom. Hugs

By Mary556 On 2014.12.20 00:12
Hugs back to you, Carman.
We had another episode this morning after my Mom woke from her nap. I was not able to calm her on my own. But my Dad was in the room with us and he intervened. He hobbled over with his walker and persuaded my mother to go back to her chair. Then he held her hand and talked her down. A few minutes later she was back to her agreeable self. It is a HUGE blessing that my Dad is here to care for my Mom as well. She always listens and follows what he tells her.
I am in awe of solitary caregivers who cope with these day-to-day difficulties as one person.
God bless you. God bless all of our PWPs.

By Mary556 On 2015.07.09 04:45
So very blessed that my Dad is here. I had to wake him up to help me in the middle of last night.
God bless my dear, sweet Mom and all of our PWPs.

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