wings and things

Dementia and bewilderment

on March 14, 2014

Yesterday afternoon Ming and I visited Anthony at the nursing home in the late afternoon. I had blue cheese, crackers, olives, pate, pistachio nuts and ripe plums. We had a bit of a feast together and everything seemed okayish except that Ants was quite confused (which is normal after 4pm).

Then, when we went to leave, I kissed and hugged Ants and told him I loved him but his face was stony. Ming lingered a little longer with Ants and told me later that Anthony had said, “I don’t know why I love her any more.”

Of course I was very hurt to be told this but I explained to Ming that Anthony has these extremely lucid moments in the late afternoon (in amongst the confusion of not quite knowing where he is, temporally and geographically) where he feels/KNOWS he has been abandoned.

“Who will help me get to bed?” Anthony had asked me earlier.

“Where am I?”

“Will you tell the somebodies that I am here?”

“But where are you living?”

I am much more patient with Anthony’s confusion than Ming is – of course – and Ming finds it difficult to match this very sick, old man with the guy I fell in love with all of those years ago. Telling him stories about the way his dad used to be helps a little, but not much, not any more. Stories about Anthony’s robust energy, laughter and farming prowess fall short for Ming because he has no memory of the Anthony-before-illness. None.

Sometimes I wish I could give Ming my own memories of Anthony but I can’t.

And yet, when I see Ming talking to anyone and everyone, and being the life of the party, and taking over various responsibilities on this farm, I see Anthony all over again – the way he was – and his Ming clone buoys me up!

Anthony’s bewilderment is mine too and it is very hard to realize now that he thinks I have abandoned him. “I don’t know why I love her any more.”

61 responses to “Dementia and bewilderment

  1. mimijk says:

    Ah Jules, that’s not what he thinks..he knows why he loves you and he knows why you love him. That’s not Ants talking, that’s this awful illness that robs him of his knowledge, disinhibits him and hurts all those who adore him.

  2. The only consolation that I can think of is that it is the dementia talking when words like that come out, not Anthony. Your Anthony is still in there, but maybe he was napping while dementia was out and about, saying things that have no bearing in your beautiful universe. Huge hugs for you and Ming. xoxo

  3. Judy says:

    I cannot imagine anyone writing about the heartbreak of dealing with dementia better than this. It takes extreme strength to counter the demon of dementia, without feeling hopeless and abandoned. All the love is still there in your heart from him to you. But I’m crying with you and it’s best not to deny those feelings, Julie. So sorry.

  4. Oh, Julie, I remember my mother saying hurtful things like that when she was in the throes of her dementia. I know how hard it is to hear. Hugs to you. x

  5. Colline says:

    He loves you because you still visit, you still care for him, you still think of all the good times you had. Focus on the knowledge that you do love him and hopefully it will ease your hurt a little.

  6. Jules, (I hope I can call you that — it is one of the most beautiful names and I think of beauty when I think of you) I can’t imagine how heart-breaking it is to not only see the man you love stolen from before your eyes by dementia, but to also have to see your son’s pain in the process.

    Your courage, love and compassion are deep — and while there’s little I can say to ‘make it all better’, what I thought as I read your poignantly beautiful post this morning was what a gift you are to others. Imagine your words touching the millions of people out there in a similar situation. Imagine your words touching my heart and softening it so that I too learn to be more compassionate and caring in my world. Your ripple is powerful.

    YOu are a gift.

    Many hugs dear one. May your day be filled with moments of joy that take your breath away.

    • jmgoyder says:

      Thank you so much, Louise, for your encouraging words. I am finally beginning to figure it all out in a way that works for the three of us – Ants, Ming and me – but sometimes feel such overwhelming despair – thank you again for all of your support. You are a legend! Julesxxx

  7. Rhonda says:

    Jules, these waves you ride every day knock most off their boards and leave them drowning or damned close to it. Your gift is that you fall off, get back on, stand back up, and REACH out and pull others back onto theirs with your sheer determination and conviction to not give up. By letting them see you fall, see your naked and scary truths…they see you continually plant your feet to ride the next wave. You laugh and cry, and laugh some more, and take us with you. You wrench our hearts with the pain in your words then tickle our souls with the stories of happier times…you have a strength of 100 born from the love (absolute) in your heart and that surrounds you in your life, flesh and feather. You have given many gifts to us here, but one of the most important, is letting those that are fighting know, that it’s okay to fall; it’s even GOOD to fall, but it’s the getting back on that’s important….love you dearly my friend xoxoxo

  8. You make a difference in his life. He feels it even if cant ‘name’ it. Once again you have beautifully, and sadly, described this horrific theif of a disease.

  9. This is such a cruel sickness of the mind, Julie. I’m seeing the same thing with my mom. All we can do is love them through it. Our own feelings have to be secondary, and we certainly mustn’t take personally, anything they say which upsets us. Hugs to you.

  10. Julie some days i don’t know how you manage these men of yours! You know why he loves you and so do i:) big warm hugs and love

  11. FlaHam says:

    Julie, What a wonderful piece. I feel your hurt, I feel your wonderment, and I feel the love you so much have for Antony, but I also see the care and concern, and it’s impacts. I am so glad you see so much of Ants in Ming, but trust me someday Ming will take your memories of the younger more robust Ants and those will be the ones he shares. Please take care, Bill

  12. Aww Jules… HUGS!

  13. Oh my friend, Ants did not mean a word of it and deep inside you know it is only the disease. My mother was horrid to me the last few years of her life but her last day on this earth she was back to normal for a brief enough time that I truly felt her love…or so I tell myself. Now I am dealing with my chair sitter and his early onset Alzheimers. Your posts keep me informed and help more than you will ever know. love and HUGE HUGE hugs my friend.

  14. Ah, that’s just his scrambled brain talking, don’t worry about it, as hard as it can be to hear. Now, did you tell Ming he’s so much like his dad when he’s the life of the party? I think that’s the type of connection he’d love to hear about. Not just you telling old stories, but showing how much of his dad you see in him today. 🙂

  15. susanpoozan says:

    What a heart rending story, I hope it helps to share it with us.

  16. Zyriacus says:

    How well do I know these moments of absolutely helpless bewilderment. Every time i visit my mother in law (88) at her place in the old-age-home (what I do every second day) to spend some time with her and try to make her more comfortable there, I come home totally depressed. Of course I answer patiently her question how people are, that are long dead, try to explain to her that she cannot come home with me since my wife is handicapped herself and there is no one to care for her. But it pulls one down, even if you try to reason that it is this dreadful illness.
    However, Jules, I want to tell you that you have to keep yourself upright. Its not easy, but you have to do it for yourself and for Ming. All the best to you and a big transatlatic hug.

  17. Julie, I know how hard it must be… the many moments when he does know you and how much he loves you… and now this other side which has to hurt to the core..even though you know it’s not him but the disease talking… I guess easier for you to realize this than Ming because he hasn’t lived as much ‘life’ as you have… he’s young… anyway thinking of you Julie… Diane

  18. ksbeth says:

    while i know this is very hard, please don’t take any of that personally. it is his disease talking. i’m happy you see the young ants again in watching ming. )

    • jmgoyder says:

      I love the way Ming will engage any and everybody in conversation at any and every opportunity – just like Anthony used to. I am much more reticent (except on this blog haha!)

  19. I can relate to this because my (now-ex) husband developed an illness in the years leading up to him leaving me. Pouring all my love and care into him, it was highly distressing when he began to turn against me and eventually leave me. A lot of my deep pain has been this conflict within me of the insult thrown at me (the abandonment) and underlying compassion of knowing “it was the illness talking”. Even if it was and is the illness, it still cuts deep. My older two children have coped better with the divorce than my younger two as they had left home before the illness took hold. Cyber hugs to you Julie, I can feel your pain.

  20. It’s hard to hear those words, but they aren’t referring to the actual and maybe not even about you Jules. Things come out of the mouth, circuits fire in the brain, and it can have nothing to do with reality. The only benediction for moments like this is that the heart knows what the mind can never comprehend, of the real love that permeates it all. The ever changing waves of words and emotions are the things that change, even if real or imagined in passing moments. The heart connection, the bond, that’s the forever. My humble opinion, dear friend.

  21. Vicki (from Victoria A Photography) says:

    Sad to hear those words I’m sure, Julie.
    But at least you have the memories and can slot those into the confused/dementia spaces.

    I really feel for Ming though. He doesn’t have those (memories). He has nothing but the Father in front of him, so it must be even worse if he compares his Father with his friend’s Fathers. He doesn’t have that role model and that Father Figure to learn from or share with.


  22. artfulanxiety says:

    Seems as though you already have a lot of words of wisdom Jules. I don’t really know what to say; just want to let you know I’m thinking of your whole family. xx

  23. Terry says:

    That had to be hard on you and Ming. I wish Ming could have known the other Ants. Hugs

  24. Lynda says:

    Julie, all the lovely thoughts have been said, so I send you my love and hugs.

  25. Those words would be heartbreaking even knowing that he doesn’t mean it wouldn’t stop the heartbreak.

  26. Judith says:

    A poignant post. Even when I know, intellectually, that Mom with advanced Alzheimer’s isn’t really Mom anymore, when she hates me on bad days, it still feels like loss. You deal with it so well.

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