Saturday, February 18, 2017

Dementia Had a Late Night Last Night

Things always look better in the morning, and this morning I feel especially grateful for this truth. I feel so bad for Jim. This character called dementia really had a grip on him last night.

The evening started out so pleasant. We made plans with our friends to go out to dinner. They stopped over for an appetizer and drinks prior to dinner. As we enjoyed our incredible view of the ocean, we enjoyed each others' company and appreciated our good fortune to spend the winter together in such a lovely, warm, friendly community.

At dinner, the restaurant was busy and noisy. Our plans to have an early dinner did not work out as planned. The meal was delicious, our waiter was attentive and funny, but the noise, confusion and busyness took its toll on Jim. No disasters during the meal, but I could see the signs of Jim's discomfort.

By the time we got home and said good night to our friends, Jim was in overdrive. I'll spare you the details, but Mr. Dementia reared his ugly head, inconsolable, angry and upset. The focus was on the temperature in the condo. I've mentioned before the struggles Jim has with temperature regulation. On a good day, he'll put on a hoodie, or take it off, or mention to me that the thermostat needs adjusting. On a day when dementia has taken over his brain, the conversation becomes a confusing entangled mess with no resolution in sight.

Yes means no, hot means cold, nothing I do is right, on and on.

Dementia finally gave it all a rest around 2:00 AM.

I am getting better at mentally separating what Jim says and does, as opposed to what dementia says and does. It is an important distinction for the caregiver. It certainly helped me last night, as Mr. Dementia was storming around.

I read somewhere that you should "never argue with dementia, because you will lose". (I can't remember where I read it, so unable to give credit. I think it was an Alzheimers newsletter.) Notice that it doesn't say that you won't win, instead it says you will lose. Important distinction. It is normal in all relationships to have disagreements, arguments. In a healthy relationship the focus is on working out disagreements in a fair way, without attacking each other on a personal level.

Dementia does not know these rules.

When we woke up early this morning, Jim snuggled in close to me, telling me how much he loved me. There was no mention of last night. I'm not sure how much of what happened he remembers, but I am certain he remembers how upset he was last night. And I'm guessing he remembers that I was the object of his upset.

This post by Dr. Elaine Eshbaugh is great. It says (much better than I can) how emotion lasts longer than cognition. This is true for everyone, but especially for those with dementia.

Jim has fallen back to sleep this morning, exhausted I am sure by all that happened. It's comforting to me that his body is now in restore mode, trying to make up for his sleep loss from last night.

Dementia: we have our good days, and our not so good days. It is always present. But I am getting so much better at emotionally separating myself from what the dementia is doing, as opposed to what Jim is doing.

Another post is written, and once again it feels good to share what is on my mind and in my heart. Thanks for stopping by.

22 comments:

  1. Too bad that such a nice outing ended so poorly. But, that's how it goes.

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    1. Hi Gigi. In this new world of dementia, I try to think of it as enjoying the good times when they happen. I try hard not to focus on the negative. I'm not always successful, but I'm getting better.

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  2. Sorry the evening went down the tubes. I imagine it's like living with a coin toss at every step.

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    1. Hi SJ. It's funny, but sometimes I can sense when it will "go down the tubes", and sometimes I totally don't see it coming.

      This afternoon we went to buy some lightbulbs. Sounds low stress, but in the store his confusion was so hard for him. I had the good sense to cut it short.

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  3. Wow, I wonder if you ever really relax or are you always on guard? I do like how you are learning to separate the disease from Jim. That seems like a real sanity saver. I guess the Jim in the morning along with the Jim you shared so many years with makes it all tolerable. You are a strong woman and Jim is a lucky man.

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    1. Thanks for your kind words Patti. You are absolutely right. Being able to separate the disease from Jim has really been the "sanity saver" for me.

      I often reminisce, by myself and sometimes with Jim, about earlier days before the disease struck. It is a pleasurable experience for both of us and really does help me to manage as well as I am.

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  4. Glad you can distance yourself from the dementia and still care for your husband. i'm thinking that your writing helps, too. I find I can make better sense of the world if I write about it.

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    1. Hi dkzody. The writing about it makes all the difference in the world. As I write, somehow my brain processes it all differently, as opposed to just stewing in my own thoughts. As a writer I am sure you know how that works :-) Thanks for your comment.

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  5. It's tough, and I can see you handle everything with consummate grace. Perhaps the evening was too much stress for him?

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    1. Thanks Tom. In retrospect I think you are right about the evening being to stressful for him. The choice of restaurant was made at the last minute, and was a new one to me. A better decision would have been to make sure we could get an early reservation, or choose a smaller, quiet restaurant. Live and learn.

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  6. Yup no point arguing cos my mum would have forgotten in a few hours.. what is the point of me being angry. It's a lesson learnt to not hold grudges. Look at my mum, she held a grudge and at the end of the day she had forgotten her loved ones but not her enemy. haha

    I am trying hard to understand how her mind works and what is it that she really need from me. Sometimes I fail miserably.

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    1. Hi Swift. I feel for you and your mum and what you are going through. I don't know that we'll ever really understand how dementia is effecting the brain. What we do know is that it overtakes the thinking and personality of our loved one. The ups and downs are often unexpected and often challenging.

      Keep reaching out, reading and connecting as best as you can. You're going to need some support and help has you walk this journey with your mum.

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  7. I too felt that the evening was too much for Jim. You have a lot to deal with and to prepare for, I admire you for being so dedicated. Many people would have to walk away from it but maybe they don't love their partner enough.

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    1. Hi Valerie. I agree the evening was just too much for Jim. Sometimes I think that I can do things that are enjoyable for both of us, but I have to be careful to put Jim's needs first before my own.

      One thing that gives me strength, is that I know if the situation were reversed, Jim would do the same for me. Actually, 25 years ago I helped Jim provide care for him mom who had dementia. We were able to keep her in her own home (with lots of support from us), right up until 2 months prior to her death when she had a major stroke. Jim was an amazing son to his mother. The love and care he showed to her when she was afflicted with dementia is awe inspiring.

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  8. I read this post thinking of the two of you locked in this dance called life, but you are doing it without the help of Jim's brain and therefore must be stronger than you ever thought you could be. I read thinking also of how I would deal with the same situation and realize that I hope I would rise to the occasion as you have. Thanks so much for sharing your journey with me; I am enriched by your words.

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    1. Thanks for your kind words DJan. Sometimes I surprise myself. I look back at our struggles a year ago; I've come a long way in my ability to adapt and be supportive to Jim. I think the biggest change for me (and it is still happening!) is being able to separate Jim from the disease. Being able to do that makes a huge difference in how I respond to the antics of dementia.

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  9. My husband and I have been married for 53 years. He was diagnosed with diabetes in 2013 and I've begun to notice times when he has communication difficulties. I've read that dementia is often one of the side effects of diabetes. I've signed up to follow your blog. I found you through Mage's Postcards blog. My blog is on WordPress (Tehachap.wordpress.com) Like you, I remember that my husband sees and remembers things differently than I do and it's more important that we not get upset or angry at one another, by trying to prove who's right and who's wrong. Better to just let it go and move forward. Thank you for sharing your life -- it's helpful to me.

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    1. Hi Tehachap. Thanks for stopping by. I'm sorry to hear about your husband's health issues. Diabetes is a tough one; it requires a lot of close monitoring. I'm glad my blog is helpful. I know that I too am helped and strengthened by others going through similar circumstances.

      I will check out your blog. By the way, I lived in Fresno Ca briefly when I was in my 20's and finished up some undergraduate work at FSU.

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  10. The ability to separate yourself from the disease is so important as you obviously know. In my work, often family members with whom I had contact couldn't seem to grasp the idea that some of what their loved one was saying or doing was "the stroke" or "the brain injury" not the person. Even knowing that intellectually doesn't mean the idea can be readily internalized without stirring up automatic emotional reactions, even if they're controlled. Then the family member trying to explain what was happening to other family and friends, or their visiting without any input and I was limited as to what I could say due to privacy concerns, some times could be challenging for all. I'm sure the more you're able to focus on that aspect, the more frequently you can begin to accept "what is" without over-reacting.

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    1. Thanks Joared. I always appreciate your clinical perspective. Yes, I know I must be able to separate the disease from the person. I'm getting better, but it still is hard to do. Your last sentence says it all, the need to accept without over-reacting.

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  11. Carole, I am sorry. In the moment, it must be so hard emotionally, especially when the angry outburst goes on and on for hours. I am glad you are finding some strategies that help you cope.

    Jude

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    1. Thanks Jude. I'm doing my best, and I try to remember to be kind to myself, knowing that that is all I can do.

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