I am forgetting to eat

Something isn’t right and i can’t figure it out. I need to write this down. Haven’t blogged for awhile so maybe this will help. Haven’t been able to blog. I don’t know why. I don’t know why on many things these days. Even typing is off. I need to start using spell checker on everything now. I should even use it for email.

I was doing A-OK all summer long until sometime in August. I began having episodes of high blood pressure. It kept rising until I felt sickish. Fortunately I get an unusual type of headache only when the pressure goes up. That headache started and kept getting worse. I took my BP and it was high. It kept going up until it was almost 200 over 101. Couldn’t reach family Dr or cardiologist. Ended up in ER for Rx and now am on a different pill with good results.

But things are different now. Am having a hard time trying to explain it to myself. Can’t seem to describe it. If I can put it into words maybe it’ll help me. I will try.

It’s like looking out a glass window. Looks smeared. Never clear. Other times vaseline ‘like’ marks are there. Can’t seem to get a good look through it. Feeling trapped in my body or mind. Can’t get it going. I think of things I should do but can’t get up to do them. Immediately forget about them and then think about it the next day. What happened yesterday? I think about the past alot. Floods of memories. The present comes and goes. If I hear Pam and Chad talking then I don’t hear the TV and vice versa. I look out at the trees and it seems like I’m looking through them with a blank stare. Feeling like I’m stuck in bubble gum when I try to move. Fighting the shakes and tremors which come and go. They’ve been worse over the last couple of months. Especially the movements in my face. Muscles don’t want to move right. It’s just now. In the moment. I see no future. I remember well how to do my crafts and how to use the computer. Guess they are well ingrained. Feeling some kind of apathy but don’t think I’m depressed. Time perception gets altered. Confusion comes and goes erratically. Almost like I’m in a dream like state. Like getting dreams mixed up with reality. Sometimes get sleep for no reason. Occasional feelings of feeling like I’m out of my body and feeling that things aren’t real but I know they are. Can’t seem to get motivated. I want to go out and trim off the dying flowers from summer, trim the shrubs, clean up outside…..but it feels far away….way out there somewhere. So close in my mind but yet far away. I look out the window to all those flowers, veggies which I worked so hard on and now I see nothing. They are there but they are like faded memories. Seems like years ago when I worked with them.’

I look at this and realize I’m babbling. Maybe hoping something will magically happen. Hoping to “snap out” of this fog or haze or…….oh I don’t know what to call it. Just that I know something is wrong. Am forgetting to eat. Chad made me a plate of food a little bit ago. I ate it little I guess. Pam asked me why I didn’t eat much of it. I just now told her that it took me almost 1/2 hour to eat it. She told me I only took a bite. Oh, ok. She said it from a distance. Way over there somewhere. Guess I’ll eat some more later. It doesn’t feel important right now. I need help but yet I can’t explain how to ask for it. I keep thinking when I go to bed that I’ll awaken feeling bright eyed and bushy tailed. I don’t. I do remember to take my pills with coffee in the morning. I remember to check my email and browse the net. And I do some knitting. Ah, once in awhile, I feel more alert and I’ll occasionally write an email. I just met a guy online who made a comment on the blog. He is also a mental health professional who is just now learning to knit. Actually it’s very cool. I have no idea who he is but it feels like he’s my twin brother from long ago. It makes me feel good to know that I can help to answer his knitting questions.

I have to go now. Am not finding much peace from writing this today. I’ll read it tomorrow and it may help me more.


29 Responses

  1. David,

    Thank you so much for this blog entry and for giving me some insight into how my Mother must have felt. She also was apathetic, but I think the anti-depressant helped. Perhaps the apathy is early depression.

    Are you still taking Ativan, could it be giving you trouble? At first my Mother didn’t have a bad reaction to Ativan, but after a while I could tell when the NH had given her Ativan because she would be totally out of it the whole next day. You might try leaving it off for a couple of days to see if anything changes. If things improve then you can add it back and see if things are worse again, so you can rule out coincidence.

    I hope you come out of this fog soon, so you can enjoy life.

  2. i check often to read, tho don’t usually comment. today, i want to thank you for sharing what it is like to be in ‘brain fog.’ i’ve had a brain fog from depression that has some similarities…feels like all my thoughts are slippery, like little fish, and i can’t get a hold of them no matter how hard i try…..i hope your fog clears soon….thinking of you and your family….hoping for sunshine…

  3. My step-father with LBD will have whole weeks where he is not clear. I always fear that this time it will not resolve, only get worse. So far, he has returned to clarity after a few days.
    My prayers go with you dear David and even through your confusion, God has you safely in His hands. When my father died after 10 years with Alzheimer’s, my friend had a vision of him sitting on a bench, feeding birds from his hand..his mind clear as a bell. This is all of our Hope.

  4. Dear David,
    I thank you for posting such clearly described experiences which certainly are not babbling. Very informative. I wonder if it would be OK to share this with the LBD conference? It would likely help many caregivers who do not receive your blog. What you describe is that the awareness is there, just getting through the fog, for you vaseline, is the battle. Well put.
    Like Laura, I too wonder if your LBD has reached a level where Ativan could be detrimental. Just a thought, you know best.
    You are very giving of your experiences. Thank you again. I am so sorry for what you describe.

  5. Thank you, David! Bless you for you description of brain fog. I have managed to eat twice every day but I am finding I have forgotten to drink enough water – imp.on dehydrating medications. Since I live alone, I keep MSNBC or CNN on at low volume in my bedroom tv. I feel it helps keep me connected to the flow of events in the larger world.

    Days I’m too out of it to read or engage on the computer, I
    default to Netflix on line & watch a film. I can tell from behavior of family members that my responses are often not what they would wish but its only after the fact that I can figure out what would have served better. lol

    You are in my thoughts & prayers.

  6. David you have been such an inspiration to me as I journey with Dad as his carer. When times have been bad you have taught me to look for Dad’s spirit, his essence which remains as the gentle man he is. Even when things are bad, Dad will say something that I recognise as him being a parent, his concern and love for me.
    Again I thankyou for sharing your feelings with us. It helps me so very much to try to understand how my Dad feels on a bad day.
    I wish you could enjoy all the hard work you did on your garden. Take Pam’s hand and go for a stroll around your garden. Leave the trimming for another day. Don’t beat yourself up over the tidying up. Mother nature is still beautiful when not trimmed.

    wishing you lots and lots of good days

  7. I can’t help but wonder if this could be a side effect of your new BP meds. Can you remember when this change started happening? Maybe you or your wife could trace it back to something specific.

    I hope that you are able to figure this out I alos appreciate your candor and your willinginess to share this part of your life with others.

    You are in my prayers.

  8. David,
    Thank you so much for reaching out through the fog, even when you would perhaps rather not make the effort. We are here on the other side, just as frustrated as you are. Helpless.

    Your writing gives me some words for what my husband with LBD may be feeling but unable to express. You are doing that for him and thousands others who have lost their ability to communicate from the inside of their LBD unique experiences. Meanwhile I follow him around, urging him to eat, drink, try this interesting magazine article, take his medications… a gnat buzzing on the other side of the glass?

    You are daily in my heart and prayers as I await your blog. I receive it with gratitude, no matter what the content.

  9. I do not know how you do that..analyze the process of neuronal decline..watching it happen..amazing.
    My precious husband “won” his war with neuro-ill-logical disorders on August 10th when the Angel of Mercy (pneumonia) swooped in and carried him away from the anguish..

    but seriously..it must be very odd to observe your own process and continue to write about it..what a magnificent organism we have locked up in our cranium..now the trick is how to find a way through, over , under ?? the Blood Brain Barrier to be able to sprinkle some new seeds..regeneration, or whatever…

    blessings, Marjorie Carmen/The Carmen Foundation (committed to 21st Century Neurological Research and Collaborative solutions..

  10. Dear David,
    Thank you! You’ve described this ‘brain fog’ so well. The first thing I did on reading this was to pray for you, and I’ll continue doing that. And for others, who’ve shared in their comments.

    And thank you Paulette, for reminding us of our Hope. Thank God that He has given us a pledge of the good things to come. Ephesians 6. I love the picture of your Dad sitting on a bench feeding the birds, with his mind as clear as a bell! We all look forward to that!


  11. David, I would definately be questioning the Ativan, having had 2 family members report major problems with the use of this stuff. It seems to be a major concern for those with LBD.

  12. Thank you David for explaing what you’re going through. I’ve always wanted to put it into words but you did it for me as I couldn’t think of them, I have VaD, Vascular Dementia. I have those same feelings sometimes going on for days.

    I get the strangest feelings in my brain, airy,it’s shrinking, lost? something’s not quite right, which is a good thing for it’s a more certain way of letting me know not to go out of the house, a TIA is on the way, paranoia, hallucinations or could be one of many things. I’ve been puching the bed, punching myself in my sleep. I shake all the time but found it not to be a form of Parkingson but a genetic clonus or other muscle problem.

    I have notes, every room, what to do; most times I forget to look at notes. I also just ‘forget’ to eat. I forget normal things you do after you get up in the a.m., even with notes on the mirror, of course I forget to read the notes.

    I understand a little of what you’re going through David, but only you really knows and feels what it’s like. I hate waking in the a.m. and wondering who’s house this is/where am I.

    Take care, brain farts will ease up, just one of those phases we all go through I hope. Pretty soon you’ll be outside enjoying the fall foliage and beautiful colors. WI is getting gorgeous color already….too fast:)

    Keep writing, David, as often as you can, everyone enjoys hearing from you, your life, your loves, and passions. Your a saving grace to countless numbers!

  13. Hey David, just wanted you to know, we’re still keeping up with you out in California and there’s lots of prayers for you and Pam and Chad today.
    Rebecca -the knitting one…

  14. Dear David,
    Sorry to hear about the “fog,” but I am hoping that it will lift soon, and leave you refreshed and clear. Sending lots of prayers and good wishes your way!

  15. Hello David,

    For once I am at a loss for words. I sat here wondering how on earth can I come up with something to give my gratitude for something so profound as you have done? A thank you doesn’t say enough. But we do thank you.

    After reading your Blog, I read it again with my husband. Every few words I stopped and asked him, is that how it is with you? He always affirmed that it was. He was amazed that someone described exactly how it was with his own LBD.
    It was so touching for both of us that we sat here holding each other and crying. You touched our hearts very deeply.

    David, you have done what you intended to do with your Blog.
    Disseminate knowledge of LBD from the inside looking out.My husband and I applaud your candor, and humility, in baring
    the core of youself. You are a true Scientist, and Doctor.
    Thank you with all our hearts.

  16. Dear David
    Thank you very much for this. My father had LBD, and I so badly wanted to understand what his world was like. Thank you for providing me a glimpse of it. I wonder for my own sake too, as I think I may develop LBD too. Best wishes to you David, I often think of you. Kathy

  17. David, thank you so much for sharing what this “brain fog” is like. My Mom just sits for hours staring out her front windows to see who is driving up and down our road. If she recognizes the vehicle, she’ll make a comment–there goes…. It’s wonderful to me that she can remember who the people are living on our road. It’s just extraordinary that you’re able to put onto paper the words from your thoughts. Our prayers will be lifted for you, Pam, and Chad. Please write as often as you can.

  18. Reading your blog made me teary-eyed. But it also provides me with some needed insight, thank you! I wish you and your loved ones all the best.

  19. Hi, dear David! I can’t believe what you are able to do even through your “fog”. This blog of today is BRILLIANT! I’m sure you don’t even imagine how many people you’ve touched with it, caregivers and others who may be experiencing the same symptoms. It’s SO informative, so clear. Your unselfishness in sharing your feelings is amazing. Thank you, THANK YOU!
    You, Pam and Chad are still in my prayers every day. I hope you do as somebody advices you in one of these comments -take Pam’s hand and go for a walk in the garden, enjoy the colors, pick some of the vegetables you planted and enjoy them on your plate. And yes, when are you going to see your doctor/neurologist? It could be one of the medications. Also, for me, BP goes up or down whenever something is wrong in my body.
    God bless you, my friend, and keep you in His hand.

  20. Dear David,
    You are helping me and the caregiving I am doing for my father in so many ways I can’t begin to count. Your work touches the lives of so many of us who sometimes feel alone and unclear but we try so hard anyway. What a beacon of hope and reassurance and comfort your light shines on us your loving audience. Your courage renews my faith.
    Prayers your way now and forever. Love, Mark

  21. As you look through the bubble that encases you, remember that you are helping to clear away the fog and fuzziness I feel when trying to understand my husband’s LBD.
    Call upon the three great physicians – nature, time, and patience. Surely one or all of them will sweep the haze away in a cool fall breeze.
    Jo Ann

  22. See how your sharing is encouraging and strengthening so many others!

    Perhaps the most important thing, Maslow’s heirachy notwithstanding, is the need to be rooted in Christ. The Bible says that he is holding everything together. We’ll understand what that means, fully, one day. Without my Rock I know I’d be all at sea!

    Blessings, and blessings,

  23. 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.

  24. Thank you for sharing your feelings and thoughts with those who are trying the understand what LBD means to the person living with it. My lovely mum has LBD with Parkinsons but is such a private person who has never really discussed exactly what she is going through. I am so glad I found this site. It may make me a stronger person and able to help mum more. Good night and god bless.

  25. […] Submitted on 2009/10/01 at 5:59pm […]

  26. David, my heart aches for you as I read your recent post. I HATE THIS DISEASE AND WHAT IT DOES TO PEOPLE! My prayers are with you and your family.
    Chip Gerber’s wife,

  27. David,
    I thank you for sharing! I was researching DLB for information for my siblings when I came across your posting. We lost our mother a year ago. She had Alzheimers, but breast cancer is what took her Sept 2008. Before she passed, our father was diagnosed with Lewy Body. Since then, my husband and I have moved in with dad, so he wouldn’t be alone at night. We all live realatively close to dad (all but one of 5 within 7 miles). My husband and I both work full time, he is retired from the military and now teaches, I am in the Air National Guard working full time.

    I see the fog that my dad is in, and it kills me that he is alone for the better part of the day. I have done some research to educate me on what my dad is experiencing. I am hoping that my siblings will step up to the plate and spend some time with dad, understand what he is going thru to help him. When my dad halucinates, at night, I always anounce myself before I go into his room, and then I ask him to ask the people to leave, he usually says they are gone, only once has he said they are right there, when I say it is time to leave so we can go back to sleep. Then I reasure dad that I have check the house and all the doors are locked and we are the only ones left in the house. I really hope that I am helping and not hurting him. Yesterday was the Race for the Cure, which my husband and I participated in. Before we got back to dads house, he called and stated that he couldn’t find mother, but that she was there 5 minutes ago. It really hurt for me to tell him that she has been gone for over a year.

    I have rambled enough. Thank you for your explaniation of the fog that I have seen my father in. God Bless you and keep you safe, I have added you to my prayer list as well.

    Donna K

  28. […] Submitted on 2009/10/12 at 12:54pm […]

  29. […] am forgetting to eat” by David Thomas, M.D.- A Psychiatrist with Lewy Body Dementia (LBD).  Great insights from David […]

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