The Long, Horrible Goodbye

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I’m receiving a lot of emails from readers and viewers sending me well wishes and asking if I’m okay. I sincerely appreciate all your positive thoughts. I want to assure you, I am fine although I’ve definitely gained back weight (more on that in a different post).

I’ve mentioned this before, but yes, we will be making videos again. We’re thinking as soon as spring of 2021. We’ve had few detours the last couple of years – some awesome, some challenging and one that is truly horrible.

On a positive note, my husband took on a huge project – he wrote 4 books – over the last 16 months. When he wasn’t working his real job he devoted all his spare time to writing – so he couldn’t man the camera in our kitchen. I am incredibly proud of him.

As for the horrible, for more than 2 years my attention started shifting from making cooking videos to my mom. Something was very wrong and earlier this year we got an official diagnosis — Lewy Body dementia.

I noticed early signs back in 2015 — anxiety, depression, and lack of sleep. But I attributed it to dad passing away. She also tended to shuffle her feet when she walked, which she blamed on her arthritis. Then there were unexplained bouts of vertigo.

About a year later, I noticed she became more agitated and restless towards the evening but it completely escaped me that she was sundowning.

Then everything changed in 2018 after mom broke her hip and leg from two falls. I remember a warning the orthopedic surgeon gave me after mom’s hip replacement. She said that about 30% die within a year of surgery because an underlying health issue accelerates.

Well, my mom’s dementia hit the gas pedal. For weeks after her first surgery, everyone – doctors, nurses, physical therapists – were telling me that her hallucinations were due to the anesthesia and the elderly take longer to recover. Then there was the extreme emotional swings, paranoia, memory loss, confusion, depression, and the lack of sleep. My sense is those symptoms were present before the surgery. It’s just that she was living with me after her release from the skilled nursing facility. Mom couldn’t hide anything from me.

It was her primary doctor who told us she had dementia and sent us to a neurologist to see if they could determine the type of dementia. Some you can treat with medication. Unfortunately, Lewy Body isn’t one of them.

The last few years have been hard as mom disappears. This is the woman who loved reading, going to school, and studying all things science. She started college when I was 5 years old, graduated medical school when I was 12 and practiced medicine for 30 years. Now she can’t care for herself. All I can do is watch as her mind unravels.

They call dementia the long goodbye. It is, and it’s horrible.

61 thoughts on “The Long, Horrible Goodbye

  1. Mandy

    So sorry you are going through this. Hope and pray for all!! Dementia is so hard to deal with!! My father slipped away from us like that!! Now mother!!

  2. Micki Henderson

    My mom has Lewy Body Dementia. she was diagnosed with Lewy’s about 21/2 years ago at the Mayo Clinic, Jacksonville, FL. Fortunately, Chief of Neurology who is spear-heading the vaccine for Alzheimer’s is also directing my mothers care.

    Just like your mom, my mother lived a life enjoying intellectual challenges.

    1) She ALWAYS did The NY Times crossword puzzles in ink!

    2) Although mom had a very reputable financial advisor, she traded many stocks on her own up until two years ago at the age of 86!

    Dot, I work on the heart and lung transplant team at the Mayo Clinic. Due to my clinical knowledge, when mom was diagnosed I refused to consider her Lewy Bodies as
    “the long goodbye.” Instead, I want her time left to be a very “precious passing.”

    I have taken a leave of absence from the Transplant team to solely focus on my mom.
    After all, I can never forget the years she spent on my behalf. So for now, I consider this time as a sabbatical. It is a time to learn more about this insidious disease and also to share thoughts, ideas and support with other caregivers.

    I would love to share with you some of the many things mom and I do together to interact, and help her enjoy so many wonderful memories of the past.

    1) At least once a week we go through her high school, college and nursing year book.

    2) Everyday I play her favorite songs from the 40’s and 50’s. I get her up to a standing position, facing me, my hands gently yet firmly holding her arms so we can sway back and forth singing along with the lyrics.

    3) Even on cool days, I put her in her wheel chair and take her for a 10-15 minute walk.
    I wrap her up warmly and put a cozy hat on her head. we chat about the pretty houses we see, we wave to our neighbors, and laugh at the squirrels that dash across the street.

    My purpose is to make everyday an interactive day for mom. Like my transplant patients, I like her to be sitting up during activities, walking with assistance, and getting outside for some fresh air and sunshine. Mom might have a couple of short naps, but for medical reasons no one should be lying in bed 24 hours a day.

    Understandably, she’s extremely forgetful…
    1) She always calls me Stella, when my name is Micki.
    2) Mom still thinks she lives in the house where she grew up in New Jersey and can’t remember she lives on Amelia Island Plantation, FL.
    3) Although my dad passed 10 yrs ago she regularly asks for him. I don’t have the heart to tell her dad has died. So I just tell her he’s on a business trip or he will be coming home later that night.
    4) Five times per week I take her out for a ride for 30-40 minutes. She loves looking out the window. Mom seems to look at everything with a sense of wonder and delight.

    Dot, The Mayo Clinic has asked me to develop a FaceBook page or a portal devoted to caregivers of those folks with Lewy Bodies Disease. I was wondering if you would be interested in joining or contributing?

    Kindly feel free to call, text or email in the hope of encouraging each other during these unique and challenging times.

    Merry Christmas,

    • Dot2Trot

      Micki, you’re a wonderful daughter. Wonderful stories. An inspiration as I move forward with the precious passing, thank you. And thanks for telling me about the page.

    • Hi Micki
      I read your commentary
      It sounds a bit elitist…in a way….like heroic… I must write to you….and tell you what it’s really like

      My mother has had her diagnosis for over 8 years. I pray every minute that GOD take her.
      Taking a sabbatical is wonderful but could you do this for 8 years or more? Some victims live for 20 more years.

      My mother is currently residing at Miami Jewish one of the research hospitals…..

      Let me ask you to do one thing.
      Lay down on your back
      Clench your fists so tightly nobody can open them
      Bend your elbows and pull your hands across your chest
      Cross your right leg over your left leg.
      Bend the right leg to a 90 degree angle them bring that leg to your chest with your lower leg and foot at an 80 degree angle suspended in the air.
      How long can you hold that position?
      How do you like water tased with thicker so you do not choke and getting your bitter meds mixed in apple sauce or chocolate pudding forcibly.

      My mom does not fit on a car for a ride. Or wheel chair or gurney….. for that matter.
      There is no wonder or delight in her eyes that are almost always closed tight.
      There are no smiles, only moaning.
      This is what Lewy Bodies does.
      You are no where near the end of what this disease does.

      This is why I pray my mother will die soon very very soon
      The tragedy of this disease at its worst when the body hits the partial fetal position and this Micki, is horrific.

      And you may want to consider what the end of this journey looks like for yourself.
      I will bet that you too will be praying for you mom to die.
      It’s cruel not to.


  3. Robert B Rogish

    Thanks for letting us know what is going on. As your husband writes his books, does he wave his hands over them like he does the food that he is cooking. I’m sorry you’re going through such hard times; please know we have been praying for you and will continue to pray that God will strengthen you and encourage you in His Word.

  4. Jossette

    Thank you for sending this. We are very sorry to hear about your mother but excited to hear about your hubby. We miss you, your videos, recipes and tips. We are still making some of your casseroles! Our prayers go out to you and your family. Peace, hope, faith and love to you and yours and we are looking forward to your next communication! Jossette & Tim

  5. Kimberly Heiser

    Hugs. My mom went through a very similar situation. Over the years, her dementia turned into Alzheimer’s. She went for surgery bc of her appendix. When she returned from surgery, she came back physically but not mentally. Over the next week, she forgot how to eat and all other necessities for living. My sisters and I placed her in hospice and she passed away 12 hours later. This was about 2 months ago.

  6. Dot, So sorry to hear about your Mom- glad you and husband doing ok – my husband has Frontotemporal dementia for the last 10 years – he’s 58 now and on Hospice at home – I’m his full time caregiver and retired Nurse – it is a horrible disease

  7. Lori Everhart

    Hi Dot – I am so very sorry to read this heartbreaking news. I lost my own mother to Alzheimer’s a few months ago, but not before a ten-year nightmare of dementia slowly ravaging her mind, then body. It is an unmerciful, heartless and vicious disease, both for the individual experiencing it and their families. For me and my sister, it felt like losing our mom multiple times before actual death finally took her. I wouldn’t wish this agony on my worst enemy. I am deeply sorry for you, your mom and your entire family. Sending thoughts of peace and mercy your way.

    Be well and please remember to take care of you, my friend.


  8. Julie A Crenshaw

    My heart goes out to you Dot. There is no replacement for our mothers. The pain of loosing them is so magnified when there is no answer that can help. Gods speed to you and your family. Always remember she may not remember you but she will feel your love.Julie Crenshaw ❤🙏🙏🙏

  9. Lauralynn Knight

    Dot, I too was glad to see your email notice today. Almost evert night I use what I call ‘Dot’s Spice’ on our meat of the day and hope you’re OK. I’m so sorry to hear of your mom’s ordeal, but know she is in the best of care with you. That’s a blessing for you both, I’m sure. You are all in my prayers and I look forward to seeing you again on Youtube. I remain ‘SUBSCRIBED”. Be Well, LK

  10. Barbara Bosill

    Please tell us more about your hubby’s books! I am one of your biggest fans and look forward to your return! One day at a time, my friend…

  11. Roxanne

    I’m so sorry to hear about your mother. This is only the second time I have heard of that type of dementia, the first being the diagnosis of Robin Williams which, unfortunately, came postmortem. I will be taking my father to be tested for this because my suspicion is that is what he has. I will keep you and your family in my prayers.

  12. Elaine

    Thank you for sharing the reasons for your absence. It is good to hear from you. You have truly been missed. I still enjoy rewatching & learning from your videos and look forward to seeing you again.

    Meanwhile, I am very sorry that you and your family are dealing with this disease and wish there were something i could say or do to support you in return for all the ways your work has supported & helped me.


  13. Arlene Hilman

    So great to hear from you again Dot, you were so missed; my favourite go to and the best recipes!
    I’m akin to you in these difficult times where heart breaks for those we love and be assured of my prayers too. Living one day at a time and with thanksgiving seeing every big and little beautiful and special thing in it is crucial for our own health and being, isn’t it?! Guaranteed, we don’t have to look far. …Dot, do I hear you saying, ‘Move over hubby, I could be writing a book myself!’ 🤗

  14. Donna

    I was so happy to see your name in my mail today. I think of you often and I have really missed seeing you. Happy for hubby, what a major accomplishment to be able to write 1book, much less 4. I know you’re proud.
    Thoughts and prayers for your Mom and for you it is so difficult to watch the person you love and one that has always been so strong change before our eyes.
    Thanks for letting us hear from you. Try to take care of yourself. ❤️

  15. LaRanda Payton

    Dot, I have wondered about you and missed you so much over the past couple of years…I’m just guessing cause I have no idea how long its been. I loved watching your videos and tried many of your recipes as I began my low carb journey. I think my favorite was your Philly Cheesesteak Casserole ❤ I spent all of 2019 caring for my Dad who was dying from lung cancer. As I write this on 12/11/2020 it is just 4 short days til Daddy will be gone a year. At the time he passed I was 60 but still felt like the little girl that just lost her Daddy 😭💔 A little over 2 years before Daddy’s passing we lost his wife…my stepmother to Alzheimer’s. It is a cruel disease. It broke my heart seeing a strong independent woman stripped of everything. My thoughts and prayers are with you as you get through this journey one day at a time. I look forward to seeing you again soon. Sending love and prayers ❤🙏

  16. Sara

    Dear Dot,

    My Dad had Dementia. He was a very mean man normally, but when he got dementia, you wouldn’t believe how nice he was. It was wonderful to see him laugh, and enjoy visiting, with a relaxed demeanor. One Christmas, my son, his wife, my husband and I went to visit him him, for a Christmas party. He opened his gifts over and over, each time getting more and more excited about what was in them. He just couldn’t remember what was in each box. That made my Christmas.

    Yes, the long goodbye… I think my husband is starting it now. That is frightening to me.

    I am sad about your Mom. I am also sad for you all. Just enjoy the little things with lots of love. There is not much else we can do. Oh, and pray for strength, love and patience.

    God bless you all, and Merry Christmas.

    Love, Sara

    • Dot2Trot

      Thank you and I am sorry about your father although he seemed to bear the illness well. Prayers to you and your husband.

  17. Betty

    I’m very sorry you are going through this with your mother. My prayers are with you for strength to do what you have to do, comfort when exhaustion sets in and most of all a little joy during the most trying and difficult times.

  18. Dianne Weber

    I feel your pain, I just lost my mother at 93yrs young after taking her out of the nursing home because I suspected neglect and abuse, and I was right by what I
    saw when she arrived home with hospice on Oct 19th. I lost her on Oct. 27th, I think she was waiting to come home to die, I held her hand as she slipped away. No more pain, horrific bedsores, lack of bathing and mouth care, not being fed or given water or her meds. I am still horribly depressed about everything that happened and I wished and regret not taking her home sooner, we were not allowed in due to COVID so we were separated for 7 months. When I get to the angry stage of grieving God help that nursing home as I am going after them and they will not have peace!

    • Dot2Trot

      I am so sorry for your loss. I think a lot of families feel the way you do. The absolute worst thing you can do to a senior living in memory care, assisted living or hospice was to cut them off from family. Phone calls or video chats don’t cut it. I’m just happy were able to bring her home.

  19. Sandra J Sweet

    Unfortunately, I completely understand what you’re going through. Sounds so like how my mom was. I’m so sorry. I know how difficult this is. Very trying and affects the whole family. Praying

  20. Susie Simpson Bogan

    Prayers and hugs I am so very sorry you are going through all of this with your Mom. Congratulations to your husband. Miss see you.

  21. Sending you prayers of support as you flag your sweet mother on this journey. The job of caregiver is both wonderful and terrible. Its wonderful that you can be there where the need is go great but terrible to slowly watch the deterioration. It is exhausting and grim. I will hold you in light in
    my heart as you hold your mother in yours.

  22. Beth

    I am so sorry to hear about your mom. It’s a hard thing to go through. Even if you think you’re prepared for what’s about to happen, you’re not.
    On a lighter note, I am thrilled to hear you’re coming back. I’ve ballooned up to almost 300lbs and I could really use someone to go along my weight loss journey with me.
    My thoughts are with you.

  23. Teresa Sewell

    I had an episode back last March where my sister who has a masters degree in nursing thought I had Lewy Body dementia but it turned out I had already had fatty liver disease and the doctors had not diagnosed it but I went to bed one night and the next morning my youngest son found me in the floor he got me to the local hospital where they thought I had gotten dementia overnight I dismissed myself from that hospital along with my sister’s help I returned back home and the same thing happened again the ER doctor knew that I had way too much ammonia in my bloodstream and that was causing my memory problems while at the last hospital a gastroenterologist did an endoscope on me and informed both me and my sister that I had cirrohosis of the liver even though I don’t drink nor smoke too much fat in the liver I was given large amounts of lactulose to keep my ammonia level down in my bloodstream I also was told to lose weight which I lost about 26 lbs but I have regained about 8 lbs during the holidays I hope when things get back to normal you will continue your videos

  24. Just last week I checked on your you tube channel. I wondered if I just wasn’t getting notifications and I am glad you will be back. I am so sorry that your mother and your family are going through this ordeal. My mother suffered from dementia for ten years before passing. Truly the long goodbye and it was terrible to live through. Prayers for all of you.

  25. john h

    I’m so sorry you have to watch that happen. I will say a prayer, more for strength and inner peace towards you, your family and the situation in general. Thanks for sharing this with us, I’m certain all your fans will be pulling for you through this ordeal. If it’s any consolation, since you’ve been otherwise occupied and I got laid off, my tonnage numbers have krept up also. Lockdown depression has not helped. I’m sending my love your way, and just want to say I miss your infectious smile while you are in the kitchen; you always cheered me up no matter what else was going on around me.

    • Dot2Trot

      John thanks you so much. 2020 hasn’t been a great year for anyone. My prayers are with you and I hope to be back soon to help all of us get back into shape!

  26. Natalie Frances Oramas

    Dear Dot, I am so very sorry to hear about your mother’s failing health. I understand completely what you are going through, as I too had to deal with my mother’s dementia. I will send continuous prayers for your strength and comfort during this trying time. We, who have followed your wonderful videos are behind you all the way. Don’t fret about not getting the videos done now, just take care of yourself and stay strong and safe. With much love and compassion, one of your followers.

    • Dot2Trot

      Thank you Natalie and I am so sorry to hear about your mother. This disease is horrible and far too many people are afflicted by it. Again thank you for your prayers.

  27. congratulations to your husband on his book writing. i am so sorry to hear about your mom. dementia is the long goodbye and it is horrible. i am so sorry you are having to go through all of this. it was good to hear from you, even though the news was both good (husband) and hard (your mom)

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