How would you like other people to behave towards you when you feel like that?

Pam’s had cold for almost 2 weeks and is having some trouble bouncing back. She ended up on antibiotics. She used our tomatoes and peppers from the garden to make hot sauce as well as freezer jam. From all the standing, it kicked up all of her chronic back pain. So she’s been on the couch for awhile and very slowly coming back. I had the cold first and no doubt gave it to her. Now that I think about it, mine lasted for almost 2 weeks too. It’s amazing how colds can make people feel so miserable but yet they are expected to work and function daily as though nothing is wrong.

COMMENT from Elderly lady in training on the “I’m forgetting to eat” post.

Submitted on 2009/10/01 at 5:59pm

Thank you. For me that is one of your best posts. So eloquent, so eye-opening.

If you feel able I would be really interested to know how you’d like other people to behave towards you when you feel like that. Do you want people to talk to you? Would you like them to take you for a walk, or to try and bring you out of the fog? Or would you prefer to be left alone? Or do you want people to just be around, but not saying anything?

What you describe reminds me of people I’ve met, and I’m never sure how best to relate to them. Of course everyone is different, but I think understanding your views would be helpful.

This an awesome question. Actually, it has never crossed my mind. I feel a bit clearer today so I can think this one through a bit. I think that I prefer people around me but not feeling as though they have to speak and interact with me. It’s a pressure I don’t want to put upon them. If people try to talk to me, then it gets very frustrating because things don’t always make sense or I feel I have to respond at a time that I’m not clearheaded or that I can find the right words. Definitely not try to make me walk or do something at that moment. Being left alone is OK most of the time. Sometimes I feel frightened for no reason and go shut and lock the doors and close the blinds. Not often, significant when I do. Overall, I think having people around but not necessarily interacting works the best for me. Following my lead would be the clue. If I wanted/tried to interact, then follow along. Otherwise, just be in the moment with me. I would imagine that this answer would vary from person to person with dementia based upon their personality, etc. Definitely don’t try to snap me out of it. If I could snap out of it, I would do it and then there wouldn’t be a problem. Kind of like trying to get someone to stop crying whenever a close loved one dies. Trying to get them to snap out of it and to begin laughing joyously is not very kind in my thinking. We all have to go through various emotions and states naturally. I’m not sure if any of this makes any sense. If it doesn’t, let me know and I try to explain it differently.

Here are some pics of our cannas. The orange one has bloomed even further but can’t get a pic since its been raining daily.

Only in  America … banks leave both doors open and then chain the pens to the counters.


 Canna 2 2009 Canna 3 2009 Canna 4 2009 Canna 5 2009


7 Responses

  1. Hi David! I am so glad you are feeling better. Even though, as you say, everbody is different, your description of what you felt on your previous blog and your response today to “Elderly lady” are very clear and informative. All of us benefit from your comments, either by knowing what our LO are going through or by preparing ourselves in case we will be struck with it in the future. You possess a brilliant mind, like Sherman did, and I remember one of the neurologists telling us that for that reason and because he had studied up to the PHd, his illness wouldn’t affect his mind as much as other people’s.
    Please keep up helping us to better understand LBD.
    The flowers are beautiful! Their name in Uruguay is ACHIRAS (plural), probably in some indigenous language. They are hardy plants and grow very well in Salt Lake City.
    Hugs for you and your family,

  2. David, beautiful cannas! You definitely have a way with producing super blooms. I love the stinky ones, stargazer I think. Mmmm, just thinking about their aroma.
    I think this is another sharing that should be shared on the LBD conference. I don’t feel comfortable doing so without your knowing. I hope you are OK with it. Will wait until I hear back.

  3. David – thank you for answering my question.

    I’ve read your answer through quite a few times and I find it very helpful.

    “Following my lead would be the clue” – it seems so obvious once I read it. And most people, whatever their state of mind or body, are able to give out clues about whether they like what you’re doing.

    I guess just trying to be kind and sensitive to the other person’s feelings is a good start. Maybe ths is situation where trusting and following one’s instincts can be better than trying to work out what one “ought” to do.

    Thank you too for showing us your photos. Winter seems to have arrived in England and there are very few flowers left. We have loads of bright shiny conkers on the pavements under the horsechestnut trees though. I like to collect them, even though they lose their looks all too quickly.

    • What is a conker??

  4. Dear Dr. Thomas,

    Thank you for writing what you are experiencing. I have followed your blog since it’s beginning exactly for the need to know what is going on in the mind of a LBD sufferer.

    I believe my Mother-in-law has LBD. However, we have not been able to get her diagnosed due to her denial and refusal to see doctors. She was referred to a neurologist three years ago for evaluation of Parkinson’s and was diagnosed as only having essential tremor.

    Her dementia has rapidly gone downhill since then. Her primary doctor refused to intercede saying she has the right to refuse treatment. Only after my wife went to his office to plead his intervention did he offer to commit her with a 5150 hold for evaluation. We hope it will not have to come to this.

    Please continue to share your experience with us as we have no ability to know what our loved one is experiencing due to her hostility, delusions and denial.

    Thank you Doctor.


  5. I think the comment about following the lead of the person applies in most cases (learnt thro’ trial and error over 15 years of caring 24/7). It is a very wise course. Your cannas are beautiful. I do hope Pam is feeling so much better now. A ‘conker’ is the hard ‘nut’ (fruit?) of the horse chestnut tree – in UK children and some adults have contests where the conker is threaded with string and flicked against an opponent’s conker, the one remaining unbroken is the winner. Various methods are used to harden your conker so that it becomes a champion! I’ve heard of baking in the oven, soaking in vinegar and others. Of course I never used those ( I can’t speak for my brother!). Could be painful if your fingers got flicked by mis-aim!

  6. Hi David,

    Hoping pam is feeling better.

    And WOW, you have a beautiful garden. That orange flower is magnificent.


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