wings and things

Dementia and distress

on April 25, 2013

Until recently, Anthony’s level of distress was due to an entirely rational sense of homesickness. Recently, however, it has been exacerbated by an irrational fear that I no longer love him.

Today he forgot that he saw me yesterday (it’s the first time this has happened), so he was really upset. I had to remind him about yesterday and then he was apologetic for having forgotten.

At this stage of his dementia Anthony can fluctuate between lucid and not lucid in the space of a single sentence. He frequently hallucinates various animals (usually calves), gropes for the right word constantly, and is exhibiting several behaviours that are totally out of character.

I hesitate to say this but I’m beginning to think that full-blown dementia would be better than this limboland. It’s not that any of the above shocks or upsets me too much because I nursed people with dementia for years, so I know what to expect.

The thing that is most distressing for me is Anthony’s distress and the fact that I have never ever known him to be so sad until now. And that is my sad too.

29 responses to “Dementia and distress

  1. camsgranny says:

    It’s not that I “like” this, it is that I truly understand this.

  2. niasunset says:

    Dearest Julie, I can feel and understand your both sadness. Not easy, but you understand him and you help him. Not easy I know dear, just I wished to be there and to invite you for drinking a cup of coffee or tea with you… Love you, nia

  3. limboland is no fun at all–unless of course it uses a stick and is on a tropical island and you have a drink with an umbrella in it–I am not being dismissive of your plight–just wanted to make you smile (((hugs)))

  4. Oh Julie. My heart breaks for both of you.

  5. lucewriter says:

    Yes, his sadness is your sadness. It’s so understandable.

  6. dcwisdom says:

    Nursing is different. Now it’s personal, and that’s the rub. Because you’ve been on both sides, you understand it more deeply than most people. It just doesn’t make it any easier, does it? I’m sorry you both have to travel this journey. I’m praying for you today (your night).

  7. Dementia is very hard to watch and deal with and I imagine it’s even harder on the person who is suffering from it.

  8. It’s got to be so difficult never knowing what to expect when you see him. I think you’re right it would be better ‘almost’ if he was unknowing all the time…The only thing I guess you would miss is having some of those moment of lucidity when he is ‘himself’. When my Mom’s ability to communicate ceased, she could never participate in a conversation again and we never knew how much she understood… we just talked to her like she did….Diane

  9. Monica says:

    Dear Julie, You do what must be done with kindness and patience. You inspire me!

  10. having worked in nursing prepares you cerebrally, not emotionally. it is so different when it is someone you love. his sad is your sad is my sad.

    warm hugs to you my friend

  11. I’m with you. The limbo time is worse than totally being out there. My mom was moved into a nursing home yesterday from assisted care, and she doesn’t remember being told this was happening. She was very upset, but later didn’t remember how she even got there. Sigh. So hard when the mind goes.

  12. sspjlife56 says:

    I hate Al’s dementia too

  13. tersiaburger says:

    I am so sad for you dear friend. Know that you are in my mind and heart! I am pretty sure you too follow Mel’s blog. If you do – go check this out. It will bring you some joy today!! Fondest regards

  14. I’m so sorry about all of this Jules. You are feeling sadness for two and I’m pretty sure that sometimes it’s for three (Ming) and I wish that you could have a break from the sadness and the stress for a little bit, just a day, but I know that it isn’t possible right now. I’m sending you hugs and good thoughts. xoxox

  15. Lynda says:

    When I read that “…he forgot he saw you yesterday” I was instantly reminded of a documentary about a fellow that had trouble remembering from minute to minute. (short term?) Anyway, he kept a journal to write down the important things so he could go back and remind himself. It was a comfort to him to go back and see that his wife had been there to visit him and how it made him feel when she did.

    Now this is not the same thing, but I wondered if you got a journal and posted the date, time and a personal message to him each time you visit him, if it wouldn’t help to make him feel a bit more secure? Maybe you could slip a little snap shot in there from time to time of things that made you both smile in the past.

    I don’t know, maybe I’m dreaming…

    Love you, Julie!

  16. Oh Julie. My heart aches for you and Anthony. Hugs

  17. Robyn Lee says:

    This has to be the worst part Julie — I am tearful and so wish I could help…. Your “sad” is mine too — and just know you are loved and not alone… always here… xo Hugs and Love – Rx

  18. I feel for you, for Anthony. Tough situation. Sending good thoughts to both of you. And, your son. Big cyber hug to you. Paulette

  19. Julie, how very hard for you both. As you say, the hardest thing is that Anothony is aware enough to realise fully what is happening whilst being unable to stop or adapt it. Sendig loads love and godwill to you both. Your love for each other is palpable, even over here.

  20. Kozo says:

    You both could use a big {{{hug}}}, Julie. Hope you felt that. Kozo

  21. FlaHam says:

    Julie, You were one of the very 1st people (blog) I followed when I started my own blog. I have watch and listened and shared my thoughts and feelings throughout it all. The love you and Ants share is beyond any I have ever seen. But with his condition(s), the pain is sometimes un-imaginetive in what you must deal. Yet thru it all you bear up. Please add my good thoughts and prayers to the many you have received. Take care, Bill

  22. Judith Post says:

    It’s still good that you can reason with him and that he calms down. My mom’s past that. And everyone run for the hills when she gets a bladder infection (which is common anymore). Not happy days.

  23. seeker says:

    I do understand your fear. My aunt has dementia and she is forever 57. I have to repeat myself a million times in a million different ways and she won’t remember. Thank goodness, medication helps her calm down. Now, she is a delightful Aunt living with dementia. Take care.

  24. paulaacton says:

    I don’t like think of it more as a ‘love and hugs’ button

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