wings and things

Disorientation dilemmas

on October 26, 2012

Over the last couple of weeks I have become more and more reluctant to take Anthony out of the nursing lodge to either bring him home or elsewhere, even with the use of the wheelchair taxi, because of how often these ‘outings’ sort of backfire.

One of the nurses said to me the other day that when he gets back to the nursing lodge he is often moodily unhappy and it has been suggested to me by friends, family and staff, that taking Ants out of an environment he is still adjusting to might be detrimental rather than delightful. Now, in principle, I already knew this because I spent many years working as a nurse, then undertaking a PhD about dementia and finally having a book published. Wiithin that book, I devoted a chapter to this very issue, so I do know.

Back then I was writing about a patient who always wanted desperately to go home so one day, I took him out for a walk up the street and, instead of being delighted to get away from the nursing home, he became even more disorientated and I had to bring him back much sooner than I expected. It was a humbling experience because I had thought, at the time, that I would cheer him up but that little venture out exacerbated his confusion and he was more agitated than usual for a couple of days. Yes, I felt bad but I also learned something.

That was years ago – well before Anthony and I were married. I told him the story of this man and Ants was proud of me for undertaking the thesis and he said I was too kind and I should have just left the situation alone. He said, “Jules, he needs to settle.” Ants felt so sorry for that man.

Now he is that man.

66 responses to “Disorientation dilemmas

  1. Louise G. says:

    It is so hard sometimes to accept what is when all we want is what was.

    You are kind Julie. And caring. And, you are w wife who wants the best for her husband. And sometimes, our heart takes time to catch up to what we know.

    Blessings dear friend.

    • jmgoyder says:

      Thank you so much, Louise. Ants is definitely entering a new phase in the disease. I am going to need to be more sensible and maybe even stop trying and this will be very challenging. Juliexxx

  2. It is ironic.. very ironic, perhaps you should read your OWN writings Julie… and listen to your OWN messages… as hard as that is.. its not easy.. xoxox

  3. niasunset says:

    I can feel and understand you dear Julie, it is not easy but as Louise told, you are very kind and caring and you are doing best always for him. Blessing and my best wishes, Love, nia

  4. Robyn Lee says:

    Oh Julie ~ what an incredible post. It does really teach us all that at any moment, any one of us can become “that man” …. Chills reading this… you are such a brilliant woman, writer, and spirit Julie ~ My dear friend ~ my heart just cries for what you are dealing with… and all I want for you is peace and wellness….. in my heart xo R

    • jmgoyder says:

      Somehow I knew you would understand and what flabbergasts me about you is that you can reach out to others when you yourself are in such pain. I cannot express how much your friendship means to me Robyn.

  5. so many times I have seen things happen to other people and thought that I would not be able to handle that if it happened to me; then it happened to me, and I handled it (however badly)
    Julie, it is easy to know the right answer, it is not easy when you have to apply it to someone you love

  6. Judith Post says:

    Good advice from a good nurse to a great wife. Poignant.

  7. terry1954 says:

    wow, what a story and a stirring of feelings. you have done so well for yourself my friend!!!!

    • jmgoyder says:

      I can definitely see why you are reluctant to arrange for Al to go into care because it really is so hear-wrenching. For me it got beyond a matter of choice which is probably a good thing but now it is very hard emotionally – definitely a dilemma. It’s almost like who do you save – yourself, or the other person? Ghastly at the moment but I can see a bit of light now.

  8. How lucky that you have that insight and can adjust to the changes.

  9. bulldogsturf says:

    And you said it before I could and now he’s that man…. shame I feel for him and you…

    • jmgoyder says:

      I really need to find a way to let go but how can I?

      • bulldogsturf says:

        you can’t … what you need to do is to manage it .. to realise that you have limits to what you can do… and accept the rest as best as you can… easier said than done… but Julie you have to think of your own health… you are no help to anyone lying in hospital yourself….
        I struggled with a similar feeling of helplessness with Lindas cancer… but they said to me exactly what I’ve said to you… do what you can and accept that you can’t do everything….

      • jmgoyder says:

        I neede that – many thanks BD! Your reference to limits really got to me. Jxxx

  10. Wow, Julie. This is profound.

  11. It’s a theft and robbery. Not only has Ants lost himself to this disease, but you and Ming have been forced to give up the simple ability to be loving wife and son.

    My heart breaks for you all.

  12. shoreacres says:

    Once upon a time I got a degree in medical social work. Years later, I was in a bad auto accident, lost a few teeth, went into shock and landed in the ER. I remember a few things, and one thing I remember is being rolled down the hallway on the guerney, propped up on one elbow and saying, “This is really interesting! I’ve spent so much time in hospitals, but I’ve never seen one from the patient’s perspective. Isn’t this interesting!? Where are we going? what are we doing? don’t you thing you should explain your plans to me?”

    I ranted and raved for about a half hour until someone told me to shut up and I did. Your situation isn’t exactly the same, but it can be a real shock to the system to be moved from one role to another against our will – especially if we remain in the same context (hospital, dementia patients, etc.)

    You can’t be Ants’ nurse and wife both. He has nurses, but he has only one wife. You can advise the nurses – question them, demand accountability from them, support them. But it’s not your responsibility to be them. After all – the nurses can’t be you!

  13. Trisha says:

    It must be so hard to let go, over and over. I’m thinking of you and wishing you strength.

  14. I feel for you. What you’re dealing with is certainly not easy. I love the quote from Louise about wanting what was. I know that feeling too. You deserve a good cry and hope you feel better tomorrow. ((hugs))

  15. viveka says:

    A touching story and it’s true … Julie, I think you are doing the right thing with not bringing Ant home, he needs to settle and everything he comes home, he doesn’t want to go back and his whole world falls apart again, he feels rejected.
    Not an easy thing for you to do, but I think Ant he was right, when he said – he has to settle. A big piece of my heart are with you both.

  16. janechese says:

    Life is full of irony but perhaps it is for the lessons that we learn in hindsight.What ever the reasons, it confirms to me how precious life’s moments are. Yet it is so important to let go of the joyful as well as the painful just for the sake of experiencing the fullness of the moment to come …Hmmm…I wonder if these thoughts are because of the medications that I am on….

  17. Wow, a full circle it seems. It’s confusing for more than the patients it seems.

  18. adinparadise says:

    This must be breaking your heart. I have two friends who had husbands with Alzheimers. They both tried to manage at home, but in the end, had to concede that it was detrimental to their own health and mental state. I really feel for you in your pain. Hugs

  19. sbcallahan says:

    if professional experience translated to personal experience marriage therapists would never get divorced! as we know, they do, so goes the way of the world. somehow we think it is different for in our situation. unfortunately we have to go through some pain and are not immune. i wish it were otherwise for you.

    you are such a kind and caring person, i hate that you are going through this.

  20. It is hard when they keep asking when they are going home and you hate the look they get when you tell them they can’t come home, I remember how it was it my pop and my aunt who both would say it every time we (me & mum) would visit them at the nursing home. That said yes he does have to settle and adjust to living in a nursing home, how is he when you are not there?

  21. Knowing something and living something are two quite different things 😦

  22. Wow. The way you wrote this really communicates the absolute pain and irony of life.

  23. Thank you Jules for sharing such a part of who you are. It has to be the most difficult phase YOU are in.
    Can I say though its a little reassuring to the layperson in me that knowing someone who majored and and did her PHD in this field still has questions humbles me.

    I have been a student of yours by choice and you have taught me so much about human nature when a disease like dementia hits a family, I am eternally grateful to you.

    You have great instincts too Jules, you are someone I admire and respect..someone this Baroness thinks a lot of ~

  24. elizabeth says:

    Heartbreaking… ((hugs))

  25. eof737 says:

    What a poignant piece… your last sentence brought tears to my eyes… I’m speechless. {{{Hugs}}}

  26. tersiaburger says:

    Hugs and warm wishes.

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