wings and things

Dysphagia and dying

on August 1, 2016

Over the last few days, Anthony has been unable to swallow food in the usual way and has been spitting it out. I knew that one day this might happen; I knew that dysphagia (difficulty in swallowing) was a symptom of advanced Parkinson’s disease but I didn’t know it could happen so suddenly.

How can it be that last week he could eat a whole block of chocolate and this week he is spitting it out? Anthony loves food! I thought/hoped that it was just about him forgetting how to eat but, since seeing the speech pathologist today, we now know that dysphagia has arrived. From now on, his food will have to be semi-vitamised; otherwise he will choke or aspirate food/drinks.

So I guess we have now entered yet another new phase. No more tasty treats of the usual kind. It’s the food thing that makes me so sad but, as usual, Ants has accepted that this is the best idea.

Anthony has been so sleepy over the last few days that I keep feeling his pulse to see if he is still alive! I am in a constant state of high-alert in case he dies outside my watch; terrified but also prepared for his death.

At the same time, I am also prepared for a prolonged period of his suffering that I will have to witness. Anthony has already lost his ability to speak coherently, or above a whisper, and I hate that I have to speak on his behalf, but what else can I do?

Our chocolate days are over.

32 responses to “Dysphagia and dying

  1. KDKH says:

    I am so sorry. Thank you for keeping us informed so that we may send loving thoughts your way.

  2. Colline says:

    Just want to give you a great big hug for strength.

  3. I am so much so sorry I remember this phase too well

  4. Terry says:

    I am so sorry. I remember this phase too well hugs, stand strong my friend

  5. Hey beautiful lady. My thoughts and prayers are with you. Hugs and love. ❤
    Diana xo

  6. Rhonda says:

    I hated clicking the like button, but I wanted you to know you were in my thoughts. My heart aches for you my friend. One can prepare, but one is never ready. Just know, we are all here for you. Much love and all good thoughts Jules….xoxo

  7. Sending love. Holding you in my heart.

  8. susanpoozan says:

    I think of you with much sympathy though hopefully supported by your family and friends at this most difficult of times. Watching loved ones dying is the hardest thing to have to do.

  9. letstalkaboutfamily says:

    I am so sorry you are both dealing with this now. My prayers for the both of you. May Anthony pass peacefully and may you find peace during this difficult time.

  10. Judy says:

    So sorry, Julie. The whole process of him fading is torture.
    I wonder if this is something that could pop up and then dissipate? I used to worry so much that my mom wouldn’t recognize me with her dementia, but it didn’t happen. Maybe this is just a bad stretch and then he’ll chew again. I remember so many symptoms would wax and wane. I’m going to pray that this isn’t a symptom that is stuck there. Sometimes, a UTI or cold would make some symptoms appear and then they would go away later.
    Ugh, I am so, so sorry for what you are going through. You’ve been on high alert for 4 years!

  11. so sorry to hear this Julie. I hope that you and Ants don’t have to suffer for too long , it will be a time of great change. Hugs

  12. Can’t hit the like button for this one, Julie. So very sorry that things are at this stage…

  13. mimijk says:

    My dad had lewy body (a form of Parkinson’s with dementia)…I read your posts and nod…I understand each step, each loss, and hold on with you…hugs, m

  14. Each phase has its glories and depths. You describe them so well. All strength as it gets harder and big hugs to Ants.

  15. tootlepedal says:

    A sad story. Our thoughts are with you.

  16. Thinking of you, Jules! ❤

  17. Julie, I’m so sorry that Anthony is doing poorly. I’m suspect that though you are hoping to be prepared for his decline, it must be so hard for you. Though it wasn’t my husband … but my mother, I can relate to how you must be feeling…. Diane ❤

  18. Tiny says:

    Just sending you love ❤

  19. This is sad news, you will have to enjoy the chocolate for him

  20. I wish I could just sit there with you. Instead, I will sit here with you from where I am. And just exist in the air of you and Anthony.

  21. arlene says:

    Praying that you find strength in all this Julie.

  22. Vicki says:

    Sorry to hear of this latest symptom appearing, Julie.

    No matter how knowledgeable one is of the symptoms and progression of this disease, there is always an element of shock and distress when they appear. Perhaps it’s just a hint of that which is to come and next week there will be different news.

    Just know that your family, friends and blog followers are thinking of you. Wishing you much love at this difficult stage.

    Vicki xo

  23. Can he drink those thickened drinks. Seems putrid but some of those flavours taste really good. Hope he can still find pleasure in it. Sad, though I wish your family strength, special moments and peace.Hugs, Jane

  24. Take care of yourself!! The hyper vigilance is so very stressful mentally and physically.

  25. Val Boyko says:

    ((Hug)) to you ❤️

  26. Judi Lynn says:

    So sorry to hear this. I’ll keep you and Anthony in my thoughts, and Ming, too. This is a tough time.

  27. 😦 There are still chocolate shakes!

  28. Lee says:

    You both are in our prayers.Also, another hug for you in addition to the ones already mentioned.

  29. lensgirl53 says:

    Jules, I admire how you articulate the almost daily travesties of an unfair disease. “Our chocolate days are over” says it all. But I fully believe that the “chocolate factory” is in Heaven….where we all hope to be when the “chocolate” here runs out. Hold onto hope as only our Lord can provide. Hugs of love…❤️

  30. What can I do but send you support from across the ocean? I feel for you, and despite following you on this journey, I am no closer to understanding how you keep holding up. You are an amazing, strong woman. I send you thoughts of love.

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