Saturday, March 25, 2017

Living In an Altered Reality

Lately, Jim has been struggling with increased anxiety and agitation late afternoons and into the evening. Over the last couple of months, I have seen a worsening of this very concerning change. It is often referred to as sundowning. This website suggests different theories of why this happens, but no one knows for sure. There is a list of possible causes and coping strategies, all of which I am taking to heart, as I try to understand and help Jim.

Confabulation is another concept I am becoming sadly familiar with. For Jim, it is more likely to occur later during the day, hence the association with sundowning.

A couple of days ago he took a nap in the late afternoon. When he awoke, he was as confused as I have ever seen him.

"Where am I?"

"How did I get here?"

(Looking out the windows toward the ocean) "What am I looking at?"

I gently answered his questions, remembering for the most part how important it is to answer simply, not overloading him with long, confusing (for him) details.

It did not go well at all. He became extremely agitated and angry.

"How could you do this to me?"

"You woke me up and painted this whole picture! What are you doing to my brain?"

Of course I hadn't woken him up. And I was simply trying to help orient him by answering his questions. But remember, you don't argue with dementia; you will lose. And you don't reason with someone who is incapable of reasoning. It will only aggravate the situation.

Jim:  "You could fix this right now!"

Me: "How?"

Jim: "You can change the picture!!!"

He was so angry at me. He truly thought that I had woken him up and given him false information about where we were and how we got here. At least that is what I think he thought. But I could be wrong about that.

When he is that agitated, it is very hard for me to keep calm internally.

I quickly realized that disagreeing with him or attempting to reason with him was not going to work. So, I did something very strange. I apologized to him for my actions. And, I told him that I was confused. And that my confusion was the cause of what happened.

What else was I to do?  Knowing how angry he was, I wanted to say something to dissipate that anger. Surprisingly he accepted this, and it helped him to calm down. He actually expressed some worry for my state of mind! ("Should you see someone about your confusion?")

Was this the right thing to do? I really don't know. But his level of agitation was quite concerning, and I was desperate.

Yesterday afternoon he wanted to take the trash down to the receptacle. He has done this before; it is a very short distance and within sight of our condo. Sparing the many painful details, when he returned, he accused me of locking our car (huh?), cursing at him (something I have never done), making him go back and forth 4 times, and putting 4 people in the back seat of our car. Oh my goodness.

He was so angry at me. But I have to realize that in his mind, all of the above is true! In his brain, in his reality, I was mean to him, so of course he is angry at me.

Confabulation; the curse of dementia.

For those who have been following my blog, you know that Jim's doctor prescribed a sedative for our flight home. The prescription provided some extra pills. In desperation, I gave him one yesterday afternoon following the above incident. He was inconsolable, and I just did not have any more rabbits in the hat. It worked.

If confabulation is the curse of dementia, sometimes amnesia can be a blessing. Jim has no recollection of the above two incidents. What I do not know, is if he carries a residual feeling of anger or anxiety. Maybe he cannot remember what happened that made him so upset, but does he remember feeling upset? I don't know.

Is there a good option out there for helping Jim with his anxiety? I hope so. The prescribed anti-anxiety pill is short acting, lasting about 4 hours. I'll be very relieved when we meet with his new gerontologist, Dr. S., and see what she can recommend.

Any time that I get tempted to feel sorry for myself, I am reminded that Jim is the one who is suffering with a damaged, dying brain; not me.

I can't wait to get home. We leave Monday. Plans are made. I received a confirmation email from JetBlue regarding the "Greet and Assist" service.

Over the last 5 days I have been gradually, intermittently talking about our flight home. It's been tricky. I can't just spring it on him at the last minute. At the same time, it's important to not overload him with too much information at any one time. Perhaps this has been the source of his increased anxiety/agitation over the last few days?

Yesterday morning he completely packed his suitcases and toiletries. I gently suggested leaving out enough clothes etc for the next couple of days. I don't think he could process what I was saying. So I just let it go. When he gets ready for his shower this morning, I'll go into his suitcase and pull out clothes for today.

All of the wonderful folks in our small community are having a pot luck on Sunday for all the snowbirds who are heading home. It will be a nice opportunity to say goodbye.

Another post is written; thank you dear readers for stopping by. The kindness from those who comment always touch my heart.






18 comments:

  1. Carole, you are perfectly entitled to feel sorry for yourself. It would be a natural thing in view of the circumstances. I hope that writing things down help in some way but please make sure you look after yourself as well. It's not easy though, I understand that. Take good care, my friend.

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    1. Thanks Valerie for your kind response. Yes, it does help me immensely to write things down! I had trouble sleeping last night with all of this on my mind. So, I got out of bed and wrote this post. It really does help to write about these experiences.

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  2. Wishing you a worry-free trip back home. I'm glad you will be seeing his doctor soon. This is really a difficult time for everyone. But thank you for taking the time and energy to write these posts.

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    1. Thanks for your well wishes DJan. It helps me a lot to put my thoughts into words. And having such wonderful, supportive readers is my icing on the cake :-)

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  3. This must be such a hard road. My husband died of brain cancer and I saw some personality change not to the good, unfortunately. But nothing compared to what you are dealing with. My concern for you could be your safety at some point....just saying.
    My heart goes out to you.

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    1. Hi Mary. The easy part is the memory loss; the hardest part is Jim's anxiety, frustration and anger. I hear what you say about safety concerns. It is one of the issues I will speak about to his new doctor. The Jim I know never ever would have treated me this way. The dementia, however, is a different story. It is slowly taking over the man I love.

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  4. It's getting close now, isn't it? I do wish you had someone who could take the trip with you and help you. I know how anxious you are about everything. I'm wishing you a peaceful, uneventful journey home.

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    1. Hi SJ. Thanks for your kind words. I think I have done everything I can to minimize his (and my!) anxiety. Now I just have to trust in my planning and go forward as best as I can.

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  5. Hopefully the flight home will go okay, and once you get home things will settle down. I can see that life is tough for you and Jim, but if it's any consolation, your writing is very powerful and affecting.

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    1. Hi Tom. I'm guessing there will be an adjustment period as we get settled in. But it will be so good to be home! Thanks for the complement. I find I do my very best writing when it comes straight from the heart, and I'm guessing that is true for all of us who love to write.

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  6. Wishing you well from clear across the country. This is much like traveling with an autistic child. One never knows the outcome until it's actually experienced. I am hopeful that you will encounter kind people who will help you as you make the trek home.

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    1. Thanks for the well wishes dkzody. You are right! A lot of the difficulty is not knowing what to expect. I have several companion cards with me that I can hand to someone if I need to. (See post from 10/5/16 for description of companion card.) I find that a smile, warm and friendly requests go a long way toward bringing out the best in people.

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  7. I hope these posts do give you a place to honestly let your feelings go and where you can feel no regret nor judgment. I know all of us are amazed at your patience and understanding. That you can see that Jim is also dismayed at his altered reality shows your immense compassion and love. I really hope this trip home does not justify your fears and will soon be behind you.

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    1. Thanks Patti. This blog has been a godsend. It is a huge relief to put my thoughts and feelings into words. The other bonus that I never really expected is the compassion and kindness that you and other readers have shown. It really means a lot to me.

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  8. The anger directed at you must be so hard to cope with! Especially when you know how much of your time, energy, and mental effort goes into smoothing the way for Jim. Have you tried distraction (sudden change of topic/focus) as a strategy? I know that this works quite well with my relative who has a mental illness (delusional, paranoid). Once he launches into one of his delusional lines of thinking, it is like a snowball rolling down a hill, and he can't shift out of it. But if I can shift his focus to something totally unrelated and benign just as he is getting started, that often helps to forestall a full-blown delusional episode. However, I know this is quite a different situation. My heart goes out to you, Carole.

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    1. Thanks Jude. You know, distraction is something that I have used occasionally with some success. The funny thing is that in the moment of high level anxiety, I don't do very well. You've given me something to think about. If I can focus on a distraction, maybe it will help Jim, as well as me! I so appreciate your comments!

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  9. YOU ARE MY HERO. Hang in there.

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    1. Thanks so much for your encouragement :-)

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