She Means Well


There seems to be two ways to describe what happens to the personality of a person with dementia as time passes. On the one hand, we are told – it’s not them, it’s the illness talking, they can’t help it. On the other hand, there are those who believe the essence of the person is still there. Bob deMarco, looking after his mom Dotty who has Alzheimer’s, subscribes to this other belief. It has been eye-opening to me to read about how he handles Dotty, and listening to and watching Dotty on the videos has been encouraging.

I think the truth as usual lies somewhere in between. Personalities are altered by the disease process, and different aspects surface at different times. Some characteristics are consistent – wanting to go home, not recognising faces, restlessness, a phase of anger. I say “not recognising faces”, because that is different from not remembering people. I know this because I am bad at remembering faces, but know who I am talking to once I have had a little more time to recollect or catch sight of the written name.

Thinking about my mom and what her “essence” is – I think I can distill it down to this: she means well. Whatever she did, how she lived her life, it was for us, her family. But I wasn’t always happy about what she did.

When I was quite young, during the school holiday, mom passed me a letter I got in the mail. To my dismay, I discovered the envelope had been torn, and immediately blamed my siblings, who protested their innocence. It turned out the “chief inspector” was mom. Her explanation:

Who is writing to you? You are only 12 years old. You will see your school friends soon enough when school starts. They shouldn’t be writing to you.

I guess she did feel bad about peeking into my mail, and became defensive as a result. Over the years, there were a couple more memorable incidents, and I wonder if the latter ones can be attributed to loss of judgement due to dementia.

About 15 years ago –

I really don’t like _____. She is no friend of yours. You should stop seeing her.

This was really out of the blue to me, and I like my friend very much. Her only offense was probably not to greet mom loudly enough. I had to remember not to have my friend over when mom was staying over.

About 10 years ago –

Oh I saw ____ the other day. You must give him a call. He will be leaving the country soon. I got his number right here. I told him you will definitely want to be in touch.

This, about a chap I was trying to keep a cordial distance from. Definitely did not want him to think I was talking about him with mom!

About 5 years ago –

I am going up for your cousin’s wedding this weekend. Yes, your aunty invited you a couple of months back, but I didn’t want to bother you with it. I have already told your aunty you are too busy with work to attend.

At that time, I was quite upset that she had spoken on my behalf without checking with me. Now I wonder if she had been covering up for forgetting to ask me.

Nonetheless, all these were the result of good intentions.

I hope I have the patience, wisdom and equanimity to accept and deal with what good intentions brings!

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26 thoughts on “She Means Well”

  1. I think it is a wonderful daughter who chooses to interpret such things through the lens of her essence. It is difficult for me sometimes when I hear mom telling people her version of things that are slight re-writes on good days, usually these are easier to let go of than the totally unique scripts of fiction on others. All in all there is nothing to be done or useful in correcting her memory and unless it is destructively blatant, the memory of others. You are very wise. Beth from middlescapes.com

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      1. Oh, I should have said ‘daughter’ instead of ‘son’. I should have remembered frangipani is a flower species. I’m sorry.

        Best,

        Eva

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  2. You are so right…’she means well’…I also had forgotten and as I get older am being reminded by my own children daily that I too only mean well. It is the same with my father, as he progressed through memories but had no recall of them the way I did that we also have our own perspective of each incident and it’s meaning may be stronger and more emotional to each person. I am beginning to learn that caring for a parent with dementia / Alzheimer’s is one of life’s greatest lessons and gifts.

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  3. I can relate to that timeline. Mom would forget things years before her diagnosis and would joke about it or just make an excuse. There would be times she would call me up to look up a number in the phone book because I was “better” at finding numbers than she was. I would get angry at what I perceived was her taking advantage of me but in hindsight she must have known something was wrong and was both too proud and frightened to admit it. You too will have moments of pure frustration which often is followed by guilt but don’t be alarmed. You can do it and it is all part and parcel of having to deal with this disease.
    What always and still befuddles me is how she went from being a tough no nonsense woman to this cuddly wuddly wanting to hug and kiss everyone person. She was never like that when I was growing up and yes! even with that I was angry and jealous that she was like that to strangers and nursing staff and never had been with me. In time I learned how to take it better…..

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    1. Yes, in retrospect, the memory loss and fudging is obvious isn’t it? But when it happens, it is puzzling and draining. My mom was very strict too and it still shows up now and then. But many new people call her ‘angelic’. I have to be grateful for that now.

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  4. I know an 80-yr-old woman who is looking after her husband. Sometimes he seems so OK—so HIM—other times he keeps drilling her with the same question. I can see how warn out she becomes especially when he is insistant. Being a caretaker in these cases are monumental undertakings.

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  5. The bottom line? Sometimes it’s easier to handle; other times it’s virtually impossible. Most people’s “normal” is somewhere in between and unfortunately, the road has more speed bumps than smooth highways. What I see, however, with Bob DeMarco, and with you, Frangipani, is that you are relating to the person, not the patient, and that goes a long way towards acknowledging who the PERSON is and that person is NOT defined by Alzheimer’s or dementia. That’s not an easy task, but it’s really the best alternative. My hat, if I wore one, would be off to you!!! Many honors and awards are due you.

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    1. Oh thank you 🙂 – just trying my best to see the positive aspects of what will likely be a long journey. Learning by reading the best of others’ experience. Hopefully the better times outlast the negative times.

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  6. I agree with that it is the disease and, like the above comment, it is a monumental task. My father is losing his patience with my mother who keeps looking for the dogs they had well over twenty years ago. He tries to persuade her they were old, they had to put them down, but she gets angry that he did it without telling her. This is not her speaking. She just doesn’t know or remember. She was never an angry person, now she snaps at my dad all the time.

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    1. I know I would probably fudge it and skip telling about the part that they were “put down”, to make it easier for everyone. All the best to you and your father as you cope with the changes. Hugs.

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  7. Even though my father isn’t able to speak anymore, I believe his personality is still in there. I can see it in his eyes sometimes. I live for those moments.

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  8. Hi Frangipani! Thank you for following my blog, http://sandwichwoman.wordpress.com. I see that you are also dealing with a parent with dementia and, unless I have deduced incorrectly, it appears that you might be outside of Canada. You might be interested in a series of videos produced by the Alzheimer’s Society of Canada. My sister and I are taking a course from the regional chapter of this society and were shown Module 4 on Monday — VERY helpful in understanding the disease and what it does. I imagine the other modules are just as good. You can find them at http://www.alzheimer.ca/en/We-can-help/Resources/Multimedia under, “The Alzheimer Journey”. Good luck with your work with your mom.

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  9. Interesting. I’m glad to hear you distinguish between recognizing faces and remembering people. I live across the US from my mom so our visits have been annual for many years. When her dementia became undeniable, I was somewhat prepared for her not knowing me on that first visit. She looked at me with a questioning stare, even when my sister said, “It’s Debby.” I said, “Im an older version of Debby” to which mom laughed and all was okay. My visit earlier this year, she was comfortable to me but, of course, can’t recall my name or place me. I very much want to believe its as you said, she remembers me but doesn’t recognize my face. Thank you. I’m holding on to this.

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    1. Thank you for sharing your experience! I think it is a subtle difference, but can be so meaningful to those affected. I have been fascinated by this aspect of dementia, and gathering my thoughts on it for a separate post.

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  10. A very thoughtful post! As with you I feel that the truth lies somewhere between: I think the person—their essence—is still there, but because of the disease/condition their biological “wiring” has been “short-circuited” so their ability to interact is moderately to severely impaired. Again, good job with the post!

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    1. Thanks, George. I think you are absolutely correct! The person is altered by the disease condition. So it is true to say that when the person with dementia is being especially mean, it is the disease that causes him to behave that way.

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