wings and things


on April 19, 2013

No matter how honest and revealing a person is, either face-to-face or in a blog, there are certain things that are unsayable, secret, too personal.

There have been a couple of incidents at the nursing lodge lately where Anthony has behaved in a way that is disturbingly out-of-character.

The ungentling of my gentle husband’s brain is causing him to do and say things that are horrible. Taboo.

48 responses to “Taboo

  1. That is the cruelest thing about the disease. There can be no shame though and those treating him know that.

  2. I get this my nan who has always been such a lovely woman she never used bad language went through a stage when she was different she would swear at people and call them names it wasn’t nan but now of course she doesn’t talk and only says a few words at a time………………a change in character happens with dementia as I am sure you know but it is so terrible for those of us who have to witness it.

  3. hi Julie, sometimes it is Best to leave things unsaid. Just keep going. You’ve got it tough at present

  4. this is so much for you to bear on your own. my heart breaks for you and though i know what you say is true, i wish there were someone you could be completely honest with. have you considered going to therapy just to have that place?

    my first husband was an alcoholic and i would try to tell myself when he said un-repeatable things no matter how hard i tried to say it was the alcohol it still hurt. if only you could be spared this. i am rambling hoping for the right words to say but there aren’t any.

    just know that if i were there i would give you a big warm hug.

  5. marwil says:

    Sending you strength as you go through all this. And hugs.

  6. I don’t like to use the word ‘hate’ but I hate what these diseases take from a human being.

  7. tersiaburger says:

    Oh Julie I wish I could just hug you. With the Alzheimers my dad too started saying and doing unimaginable things! It does not reflect on the man that Anthony was – it is merely a reflection on the devastation of the disease. He would have been mortified if he realised his actions and words… Anthony no longer is the man you met, fell in love with and married. The body you see is just that – tissue, bones and organs. The “soul” has left. Strength, compassion and love to you my friend.

    • jmgoyder says:

      But some of the time he is totally lucid – Ming says that he is gone but I can’t accept this yet. You are a beautiful friend.

      • tersiaburger says:

        That is the nature of the disease… Perfectly Lucid the one moment and gone the next. The paranoia and aggression are also clear signs of where Anthony is in his Alzheimers journey. In time you will look at photos and think “how could I have thought he was having a good day? His eyes are “gone” ….. I think Ming may be right. Be strong dear friend.

  8. It must be so hard to watch. I can’t even imagine.

  9. The brain is such a intricate thing and controls our thinking and of course what we say..etc. I remember how hard it was when my mother had brain surgery and her personality changed and it was so difficult…to see this humble woman who nary had a bad word to say about anyone…started to be critical and develop a different nature… So I do empathize with you Julie… nothing it seems can change what is happening to Ants…but thoughts and prayers are sent your way..Diane

  10. victoriaaphotography says:

    I’m sorry to hear this, Julie. It must be so hard to hear or see this gentle farmer, Anthony, behave is such uncharacteristic ways, but I’m sure everyone understands.

    Difficult times call for enormous strength…….and you have that in abundance. I’m sure those who encounter Anthony’s unpredictable behaviour don’t hold it against him.

  11. niasunset says:

    Oh dear Julie, I wished to be there too now, love and hugs, nia

  12. Julie, I clicked on ‘Like’… but, not to like what’s happening… but, to reflect that I read your post. I’ve worked around Alzheimer patients… their world is completely different. They have no idea they’ve changed… it is so sad.

    I know you are experiencing a lot of heartache. It in no way way reflects ‘bad’ on your husband’s character… he has an illness. My heart feels so much compassion … this is something I’ve not experienced living with personally (I promise you that I’ve experienced many things… just not this)….

    I sat here trying to imagine how it felt to have one’s husband not know them anymore, to see their faces that are the same… yet, it’s like a different person is there, and they don’t know you. I feel pain in my heart just for what I imagined it to ‘feel like’… it’s ‘grief’, too. I just wanted you to know I cared. Love, Gloria

  13. TBM says:

    I can’t imagine what it’s like for you. Sending a hug

  14. I can relate to this post. My family went through it all with Mom, so I know how painful and bewildering it can be. Hugs to you. x

  15. FlaHam says:

    Julie, I can’t even begin to imagine what Ants may have said, and in reality I don’t want to know. When your ill there is sometimes a disconnect, you can’t prevent it, sometimes you don’t even see it. But the illness is robbing you. In your heart you know Ants would never intentionally hurt someone. And i know you will keep that in mind. Please take care, warm hugs and soft kisses — Bill

  16. terry1954 says:

    We are going through this too. Staff says Al is rude and mouthy, which is so unlike him

  17. Julie, the staff working with him understand this. There are so many different things that can present like this, including lack of oxygen to the brain. I’ve seen it, it’s taught in nursing and medical schools, and a good provider does not take it personally, nor does a person with compassion. Some diseases have mucus, some have words, some have stumbles, but a good heart never loses sight of another good heart, struggling or not, we see it is not personal. I feel honored to be a fly on the wall here with you, along for the rollercoaster ride that I wish weren’t happening but it is, and it’s my hope that all of us here, my little ole self included, bring you comfort. Paulette (ps. I also know personally from Lyme disease how the brain can be altered, thankfully that one is behind me but boy it was humbling).

  18. It is a horrible disease. We understand why you wouldn’t want to share some things; and also that it is not the Anthony you know and love who is at fault – it is that wretched PD.

  19. dcwisdom says:

    Yes, and even when you know what to expect with this disease, it’s a killer watching your loved one go through the disease process. We have memories of when he was healthy and vibrant, and now his once glowing personality is gone, never to return to the person he once was. It’s a heartbreaker. I’m sorry, my friend. But, you will have some silver linings that will mean the world to you. Keeping you in my prayers…

  20. letstalkaboutfamily says:

    It is the same with my dad and his dementia. Fortunately, the staff recognize that it is the dementia and are pretty understanding. Usually he is kind and funny but when he feels trapped, he begins to say things that offend. It is a terrible disease. Hopefully, Ant’s staff recognize that it is caused by his disease also. Hugs to you!

  21. This part of the disease is so disturbing, awful. i have stories, too.

  22. Robyn Lee says:

    Oh Julie ~ I am so sorry. All I can say is this behavior is not who Ants really is. I think that is the most important thing you can focus on when these scenarios present. Keep reminding yourself that it’s the disease – not Ants who is behaving this way… he is still inside there but being stifled by the pd — it’s horribly awful to witness – there are no good words… Love you ~ xr

  23. It’s always like that when the mind is sick. He can’t help it.

  24. Trisha says:

    Sending hugs your way. I’m sorry you and Anthony are going through such a difficult thing.

  25. I am sending you a strong hug. The only thing that I can think of to say is that the nurses are professional and they have the experience necessary to not take it personally. The most difficult part of all this is for you, because how else can this all be, but personal for you. Just remember that Anthony is still in there, kind and gentle and the other part is the manifestation of the disease and it’s not him.

  26. So hard. My mum is acting like a teen at times. If it weren’t so sad, it would be funny.

  27. Susan says:

    Definitely not advice…but I read in the local paper this week about a group that is working with people with Parkinson’s and their carers and family through music. Not sure if you guys are musical, but it’s definitely good for anyone’s soul and might be a break in routine with supportive people? Thinking of you x

  28. WordsFallFromMyEyes says:

    ‘ungentling’ – I like that. It fits well.

    I am sorry what you have to deal with – and watching your husband, who you love, closing down this way. I am truly sorry, Julie. I am glad you blog, reach out.

  29. tersiaburger says:

    I forgot to mention that my Dad proposed to his caregiver ever day…whilst he thought he was married to me… Lots of hugs

  30. Kozo says:

    Although you are not speaking the words, Julie, you are releasing the energy here. {{{hugs]}} for your strength, courage, honesty, and love. Kozo

  31. This will probably come out the wrong way – but at least he has a physical reason for behaving that way, unlike some people who are just pure meanness.

  32. bluebee says:

    So cruel when the brain breaks down.

  33. Lynda says:

    I’m sorry. Though I think it isn’t all due to the Parkinsons. Bob’s mother used to come off with some good ones in the hospital when she was feeling her most miserable. 😐

  34. magzmama says:

    This has to be so alienating. I’m sending you loads and loads of big American hugs along with lots and lots of love. I hope you’re taking care of YOU!

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