wings and things

“I’m so much better, Jules!”

on November 1, 2013

Today I picked Anthony up from the nursing lodge to take him for a doctor’s appointment to get some of his never-ending skin cancers burned off with that ice stuff. Having been a farmer all his life, out in the full sun before the days of hats and sunscreen, he develops many of these on an almost daily basis – new eruptions from old sun damage – on his arms, face and back mainly. Even though it hurts, Anthony has a strange liking for the procedure, mainly because he really likes seeing our doctor and so do I.

In the car on the way to the doctor’s office I asked him did he remember what had happened last night and he surprised me by saying yes.

Me: Well I think we should tell the doctor because this seems to be happening more often and you sounded so terrified.
Anthony: I didn’t want to be ordered around.
Me: So you fought the staff, told me I was part of a conspiracy against you, thought you were being tied up, and frightened the hell out of me.
Anthony: They deserved it.
Me: But they were just trying to put you to bed! Was anyone being nasty or pushy?
Anthony: Not really.
Me: So why did you fight them?
Anthony: Oh, just for a bit of fun.


Before I go on, I should explain that this kind of conversation flows much more smoothly on the page than it does in real time. In real time, there are a lot of pauses and sometimes Anthony’s voice is so soft now that I have to say, “what?” or “say that again?” before I understand what he is saying.

Anyway, his ‘bit of fun’ comment made me laugh, until I became a bit cross.

Me: So you think it’s funny to torment the nurses and make me cry for worrying about you.
Anthony: The first thing yes but not to you. (He reaches out and pats my knee as we pull into the doctor’s parking lot)
Me: Well I’m going to ask the doctor to prescribe you with something for when this happens again.
Anthony: So you want to drug me.
Me: Nooooo! I just don’t want you to have one of these terrified episodes again with nothing to calm you down. Even I take something like that now and then!
Anthony: Yes, but you probably need it.

He has a point there!

When we went into the doctor’s office, he already had his ice-spray thingy in his hand like a weapon (a little joke he and Anthony share), but I told him that our visit was two-fold and then described last night’s incident, including Anthony as much as I could, despite his point of view being different from mine. He, too, thought it was funny when Anthony said it was all a bit of fun and Anthony’s eyes did that rare twinkly thing and he nearly smiled.

A new medication was prescribed, several skin cancers burned off and we left feeling as if we’d been on a social visit. By that time it was early afternoon, so I suggested we eat at a restaurant but Anthony wanted MacDonalds (most unusual!) So we got burgers from a drive-through, went to a park and ate them in the car (much easier than getting Ants in and out of a restaurant), then went to a bakery and bought a fancy tart which he vacuumed up, and a big chocolate cake for the nurses. By the time we got back to the nursing lodge, he was exhausted.

Okay it is now nearing the time I usually ring Anthony to say goodnight. The new pill won’t be available until tomorrow so we may well have a repeat of last night’s situation but this time I will be ready and I won’t let either of us be disarmed. I have to be prepared for the worsening of Anthony’s condition even though every single morning he says to me, “I’m so much better, Jules.”

25 responses to ““I’m so much better, Jules!”

  1. artfulanxiety says:

    Whoa. Roller coaster ride. Hope he is okay tonight and you get some rest xo

  2. Ann Koplow says:

    This post helped me, today. Thank you.

  3. I love his humor. And your devotion.

  4. It is always an adventure isn’t it? You are incredible Jules don’t ever forget it

  5. Even though it must be soooo hard when he has episodes like he did, at least you have some moments when he is responsive and like ‘himself’ at least a bit… take care… Diane

  6. You are a strong woman Jules.

  7. OMG, the rollercoaster of life and love with a debilitating disease. I admire your love for each other and his sense of humor. Hugs to you.

  8. Judy says:

    The way you wrote this is so beautiful that it left me gasping and tearful. I cannot imagine how difficult this is. So much love and so much pain!

  9. tootlepedal says:

    I hope that the medicine has a good effect and I am glad that you had a trouble free meal.

  10. I admire the way you roll with the punches. And it must have been nice to see the twinkle, even when the reason for it was frustrating.

  11. janechese says:

    My goodness, Anthony is such a kidder! Every moment counts, doesn’t it?…It is good when you can have some fun.You and your family is inspiring to me.

  12. Vicki (from Victoria A Photography) says:

    You’ve gotta love a man with a sense of humour, Julie.

    It’s good to hear Anthony’s is still intact, but the very fact that he doesn’t realise how terrifying these ‘incidents’ can be to others is a little worrying.

    How do you know when they’re real and when he’s having a bit of fun? Is there any way to know?

    Is there any way to get through to him and let him know the more he does these ‘bit of fun’ tricks, the more strict and insistent the nursing staff will become and the more he will resent their increasingly forceful directions.

    Sometimes I don’t know how you get through these days. You must have enormous strength,
    and for that, your family must be eternally grateful.

    Hang in there my friend – for all the bad days, remember the good ones to keep your going.


  13. Oh Jules I don’t know how you do it, you are amazing, I hope the new medication helps

  14. he must have been embarrassed by his behavior. i cannot imagine how scary it must be when he doesn’t recognize people and they are trying to force him to do things he doesn’t understand. for you the fear and the anger must get so wearing on your body, mind and soul. are you still seeing a therapist? it is always good to have as much support as possible.

    • jmgoyder says:

      You hit the nail on the head with the embarrassment. I could sense it in the doctor’s office but have only fully realized it after reading your comment. Thank you Sandra. Haven’t seen counsellor for awhile now – good idea.

  15. Trisha says:

    What a roller coaster of a day! I’m glad you got to see Anthony’s eyes sparkle and an almost smile. It must be so great to see his sense of humor come through.

  16. Terry says:

    Well he definitely has not lost his sense of humor!!!!!!!

  17. FlaHam says:

    Julie, I really don’t know how you do it, nor maintain the courage and strenght to continue. The love you have for Ants is on such a level I have never experienced. I truly reading each epidsone knowing some will be heart warming and others not so. It is wonderful to see such love, and being honest, it’s wonderful to see Ants maintains a sense of humor. Thank you for always sharing — Bill

  18. Lynda says:

    Julie, what a rough week for you all. Poor Anthony! I’m glad you have meds for him to help him calm down.

    We lived a half hour away from Bob’s mother when she was so ill. It is hard to have that distance between you. In the long and short of it, I think you need the farm to recharge your spirit. I can’t imagine you dealing with this pain and not having your birds to bring you renewed joy each day. I hope you keep the farm. (((o)))

  19. A difficult ride you’re on Julie. I wish you many blessings from the universe. You deserve a sainthood, I should think?

  20. bluebee says:

    Your love for one another shines through all this heartache, and Ant’s humour 🙂

  21. Barb says:

    Such a difficult, challenging time…for both of you. I wonder if “just having fun” is the only control he feels he has?

  22. tersiaburger says:

    It is a coping mechanism – he is embarrassed. The poor man – how dreadful it must be for him. He still has the awareness of what is happening in his life. Would you please put your arms around him and hug him for me? Much love my dear friend!!

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