wings and things


on September 22, 2012

I have been avoiding talking about, thinking about and even visiting Anthony for the last couple of days because I am so sick of the sadness of his Parkinson’s Disease, sick of my own guilt at placing him in the nursing lodge and, yes, sick of the increasingly blank expression in his eyes.

Today, I organized the wheelchair taxi to get Anthony from the nursing lodge to a nearby restaurant because my mother and her old friend wanted to have lunch with us. My mother’s friend has recently moved into a nursing lodge in Perth (200 kms from here) so it was wonderful to see him and he kindly paid for our lunch. It all worked out fine with the only drawback being Anthony’s blankness, because he is now beginning to find it difficult to form thoughts into words, so the conversation tends to happen around him rather than with him. Contriving topics of conversation that will trigger memories and get Anthony talking is not my idea of fun.

Ah, you think, how selfish of me. Yes, I agree but while I am being so honest here I may as well also admit that I was absolutely dreading today’s lunch. What if the taxi didn’t arrive on time? What if Anthony didn’t feel well enough for the lunch? What if he’d somehow missed his medications? What if I couldn’t find the wheelchair entrance after the taxi arrived? What if he had to go to the loo and couldn’t walk? What if the taxi didn’t come to get him on time? What if he couldn’t manage his food? What if he got unhappy with me? What if he got nasty about going back to the nursing lodge?

Okay, luckily most of those things didn’t happen, but some did and, towards the end of our lunch, I caught myself looking at my watch, just wanting it to be over so I could come home and be free again. Yes, I wanted to be free of Anthony – there I’ve said it.

The weird thing is that after following the taxi back to the nursing lodge and wheeling Ants into his room, he suddenly became unblanked and, using his walker thing (you know those ones with wheels), he almost ran me back to the entrance with a nurse accompanying us. At the doorway, as I said goodbye to my beautiful husband who barely resembles who he used to be, he suddenly said to the nurse, “She’s avoiding me, you know.”

The nurse said, “C’mon, Tony, what do  you think it’s like for her? Stop making it so hard for her to leave.” (I wanted to hug that nurse!) But Anthony just kissed me reluctantly and turned his back on me as I exited, then said to this huggable nurse, “She wants her freedom.”


61 responses to “Avoidance

  1. Being a caregiver is such an emotional roller coaster. I think you are handling it with a great deal of grace.

  2. (hugs) why does life have to be so tough sometimes–keep writing — your honesty is refreshing even though brutal for you

  3. My heart goes out to you. You are needing to mourn the man who was but are unable to do this in the normal manner as you are caring for the man who has taken his place. This can be quite distressing and you need to feel free to do this in whatever fashion as you can manage. Do not feel guilty for occasionally not being able to face things and needing a break. You have been a rock of support for him and you need time to yourself sometimes so you can recharge and remain strong. Thinking of you every day. Keep on keeping on. 🙂

    • jmgoyder says:

      Thanks, Elizabeth – it is such a tricky and often unpredictable situation. I often feel guilty and I can’t seem to eradicate that – I can’t be happy when he isn’t. On the other hand, according to the nursing lodge staff Ants is mostly happy so I don’t get why he does the miseryguts thing when I turn up – argh!

      • Remember it is the illness talking, not him. It is a normal thing their frustration is taken out on loved ones yet somehow they remain Ok with strangers. It is part of the medical condition. It helps to emotionally detach from the situation. This is difficult to do at first but does help and does work. I have done this by putting myself within an imaginary bubble that protects me. Then when the comments come, they deflect off the bubble and cannot enter your space. You cannot be hurt within the space of the bubble. You are then better able to disregard the comments as coming from the old Ants. They are not. They are coming from the illness.
        Hang in there. I am with you all the way. You are doing well.

      • jmgoyder says:

        That bubble idea is brilliant!

  4. bluebee says:

    “Ah, you think, how selfish of me.” – not at all, Julie, not at all.

  5. I don’t think you are selfish; I think you are human, and coping with a dreadful situation.

  6. sbcallahan says:

    ahh my dear woman, you are so hard on yourself. it is only human for you to have these feelings. this is a safe place to say the hard things out loud. once said, and the earth doesn’t open up and swallow you, it will become easier.

    wishing you peace of heart, big hugs

  7. Colline says:

    Watching someone you love deteriorate is hard. I have had family members with the disease and it is true, conversation does tend to move around them because they cannot participate. But you are still there. You are still spending time with him, taking him out. Your love is no less because you worry of the little things and wish to spend time without the worry of how to care for him. May God give you strength.

  8. Anthony probably wishes he could be free of Parkinson’s too. You’re only human, Julie. You’re running a hero’s marathon and it’s only natural that you’re getting a bit tired. No need to beat yourself up over it. You’re doing great, just getting tired – naturally.

  9. When I clicked the Like button, I didn’t mean I liked the situation you talked about. I only mean to show support for your writing.

  10. Wow. Perceptible man, despite his increasing withdrawal. I have been where you are now (with a mom instead of a spouse, so different situation), and it is so HARD.

  11. My heart goes out to you, Julie, as you struggle with your guilt. I think your feelings are natural and there is no need to be so ambivalent, but easy for me to say. The man you knew has changed, you love the man who was, and feel responsible to the man who is there now because of all the happiness you both have shared over the years. It must be one of the most difficult situations a marriage can face. {{{Hugs from Connecticut}}}

  12. Jules, speaking to you as someone swho has been somewhat where you are although it was a parent, you are doing a magnificent job. No matter how much you did, it would never be enough because this is a dreadful, all-consuming disease. You are forced to do what is right and try to sepearate any emotion from that decision on a regular basis. This takes an enormous toll on you so “avoiding” it might be necessary so that you’re able to get up and do it all again the next day. Take care of yourself.

  13. Robyn Lee says:

    Read this one out of order — get it — poor Julie — you are so all over the place with the feelings — Of course you want to feel free — everything you’ve expressed here is so appropriate and human – and honest. I admire you for being able to write your heart this way…. you are in one of the toughest emotional dilemmas of all time Julie — yes you are a Hero — don’t care how much you deny it — I see the warrior woman in you every day. Hang in — Feel all the feelings and Love — always here… (even if in my own sort of hell) Know you are supported and loved ~ xo

  14. I continue to admire greatly your courage and honesty in sharing this story and my thoughts are with you… ❤ (((hugs)))

  15. artsifrtsy says:

    I feel for you. Sometimes the things you do to make life more normal can seem harder on him than his routine. It’s normal to want things to be different. It’s normal for him to resent you. That doesn’t make it easier, but it does make you both human. I remember my grandfather weighing the decision to get grandma into full-time care. He told me that he had promised her that he would never do that. I asked him if the woman he married who was vital and crazy about him would want him to kill himself slowly caring for her. You are dealing and caring for a different person than you married – so is Ants. Go easy on yourself.

  16. elizabeth says:

    Hang in there Julie, one day at a time. (((hugs)))

  17. Don’t be so hard on yourself. We all want freedom sometimes, and you have far more reason to feel that way than many of us.

  18. viveka says:

    J, Ant knows you so well and he remember – he understand deep inside, but that is maybe he are so sad and that is why he are upset. Just like he said .. when you left – she wants her freedom .. and I think he understands why, but he are afraid that you will chose you freedom before him. Nothing wrong be wanted to be free – you still there. Of course you now feel guilty deep inside and have to fight that too.

  19. Rhonda says:

    reminds me of a child who acts just that way when his/her parents are near, but not when they are not. i feel for Ants when he feels that bit of self pity and for you who has to bear the brunt of it. It’s not getting any easier Jules, and it won’t obviously, but you are getting stronger. It’s just a self defense mechanism…for everything that’s coming. Don’t be so hard on yourself, you are going to need that ‘perceived’ selfishness later. He loves you, you love him…NOT changed and NEVER will.
    love you

  20. terry1954 says:

    that was breaking my heart, and i think it was because i can relate. many times there is a love-hate relationship between my brother and i. i hate the bad changes, hate having to sell furniture in order for more room to be made for his walking and walkers. the depressions, the wanting to die, it all takes and sucks you right in. i want some freedom, so i can remain calm. i love my brother to death, like u love Ants, but……….it is very hard. Al, for the last three days has been telling me his brain is confused. i think he is actually saying he is forgetting things. he tends to stutter and struggle to get words out. my heart hurts with you my friend…….i hate PD

  21. FacetsofLucy says:

    When I read the end of this post, Julie, I felt an actual physical pain in my heart. You’re doing so well even through the ups and downs. You know why I ask this: Is Al processing during conversation but just can’t get the words out or are there times he just isn’t processing the conversation at all? Prayers for you both.

    • jmgoyder says:

      The processing comes and goes from one minute to the next. It is disconcerting but this is only recent so in many ways we have been lucky because Ants has had PD for years and the physical and mental deterioration only got dramatic last year.

  22. Yes it is hard so sad and so bloody hard for you but I do understand that when he is having a bad day you would want to escape and be free of the pressures of having to deal with him when he is like that all you can do is remind youself that it isn’t him it is the disease. What is even sadder is that there will come a time when you consider him having a good day is when he answers your simple questions, I know we are like that with nan if she can say a few things when we visit it is great and if she has a sparkle in her eyes which doesn’t happen as often as we would like

  23. Sorry you had a tough day. I can imagine the strain of such a “nice relaxing lunch” with Ants. Nothing is easy any more. Of course you need your freedom. Without some free time you’d really go nuts. Hang in there, you’re doing an amazing job!

  24. Judith Post says:

    This is sad, but so, so true. I’ve watched way too many loved ones “pass,” even though it took my dad years and years (multiple myolama–like a blood cancer). Somewhere, along with all of the love, you want freedom for you….and freedom for them. John’s mom took twelve years in a nursing center–manic/depressive paranoia. My grandma and aunt just sort of faded bit by bit. My mom has Alzheimer’s, but I’m sad to say, I don’t see her that often. I just cook for her. I so understand. Loving them just takes so much energy. The love’s still there, but sometimes, the energy’s not.

  25. Sometimes you have to preserve yourself and take a break. You’ve done so much already, tell Ants to give you some breathing space once in a while instead of the guilt speech. 😉

  26. magzmama says:

    From every ounce of emotion that runs through your writing, I can’t help but believe that it’s the Parkinsons that you want and need to avoid. It’s the brutal changes that it’s caused in your lives. It’s living healthy and having a beautiful and angry teenaged son that gives you a constant reminder of all that Anthony is missing now. How could you NOT feel this way?? I think you’re amazing, and I really hope that the guilt melts away and you do what you can, but not more than you can handle. I hope that makes sense.

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