Monday, July 6, 2015

Insights into a Mind Damaged by Alzheimer's

Coffee stained section from Mom's journal.
Yesterday I was shocked when I read Mom's journal entries for the day. I felt appalled by the complete disconnect with reality; the brokenness of expression revealed the extent of the brain damage she's suffered. There was an almost frightening singsong, sometimes rhyming but nonsensical pattern to some of the words she'd written.  I suppose the brain shrinkage from Alzheimer's along with the plaques and tangles that destroy neural connections can cause symptoms similar to those suffered by the mentally ill. After several pages of disjointed, sometimes illegible entries, Mom ended with these heartrending words:
Where is she? Her ticket say MO
That is where her farm home is.
(Mom grew up on a farm in Missouri)
I realized that I've underestimated the degree to which Mom's thinking processes have been compromised, and because of this I've been unkind when I have only intended to spur her to do for herself what I thought she was still able to do. 

Because my mother has a pre-Alzeheimer's established habit of recording her thoughts in spiral notebooks, her journaling has helped me make a list of reminders for myself that may help other caregivers as well: 
1) Don't assume that our patients understand more than they do. Pay close attention to their responses, even (especially) those that seem at first to make no sense.   
2) Do respond with love and acceptance to irregular behaviors.
3) Don't respond according to the past rules of our relationships with our patients.  In the past it might have been appropriate to respond to our loved ones' seemingly unjustified hostility with self defense or logical argument, but now such responses are ineffective and even cruel in light of the patients' compromised ability to think clearly. 
4) Be willing to try one strategy after another until we find ways to communicate effectively. 
5) Don't assume too much.  Arm ourselves with knowledge about the brain damage of dementia and how it impacts behavior. 
6) Remember that although the mind is damaged, the heart remains intact. Our loved ones still need  kindness, expressions of love, hugs, and approval.  Our disapproval still has the power to hurt.  

8 comments:

  1. My daddy would argue with my mama about something "you know so and so" and I would cringe. I tried over and over to get him to see that reality for her was different than for him. He just couldn't cope with the changes. Such great advice to anyone who is a caregiver or loved one.

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    1. Thanks, Bonnie...I think it must be especially difficult for a spouse to cope dementia related changes...Alzheimer's is so diabolical because the disease related changes take place within the brain, out of sight. The rules of the relationship change. Hugs and prayers to you and yours!

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  2. The goalposts keep changing with this disease...you are being made equal to the task by a loving Lord. He keeps granting His wisdom in every situation. Many blessings to you and yours and prayers for ongoing wisdom and strength.

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    1. Oh, Vee, exactly true. When we began Mom's Alzheimer's journey we were told the disease would run its course for her within about 3 years. That was eleven and a half years ago. Thank you for the encouragement: "...you are being made equal to the task by a loving Lord." Thank you for your prayers.

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  3. Such a good post, Linda! I have to constantly rethink my expectations of what Mom can do. In the past, I found myself irritated when she did "this" or "that" and it's taken awhile for the reality to set in that she can't do "this" or "that". I've ordered your book - "My Mom has Alzheimers" and I waiting for it to be delivered. My mother has not been officially diagnosed with Alzheimers but much of her dementia is similar.

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    1. Thank you, Melanie. You know, every single time Mom experiences a downward turn, I have to go through another mini-transition into the caregiving role as my responsibilities to her increase. There is always that period of "oh come on you can do that..." My prayers are with you.

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  4. It is so sad to see the effects of Alzheimer's. A friend of mine...her mother is 92 and is living in a place where there are other seniors with the same thing, and I have gone to visit her. Sometimes she is fine, other times she is not. Wonderful post, thanks for sharing, and you have a lovely blog. Warm greetings from Montreal, Canada.

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    1. Funny you should mention how your friend's mom is ok at times and at others is not...the past week or so my mom has had a much more in-touch-with-reality time of it. She has been calmer, and understands more of her surroundings, etc. If only we could accurately analyze the factors that contribute to the good times! Thank you so much for posting, love the greeting from Montreal!

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