wings and things

‘At home’

on July 15, 2014

It is several weeks now since I began the routine of making myself at home in Anthony’s room at the nursing home. Sometimes I am there from noon to 5pm, but mostly from 2-5pm. The fact that I am always there at sundown has been a plus, and sometimes Ants thinks he is at home. My mother visits him at least once a week and told me that I had made a little ‘Bythorne’ there (that’s the name of our farm). I now write everything Anthony says to me in a notebook because I am fascinated at how someone with encroaching dementia can to-and-fro from past to present, from memory to imagination, from anxiety to exhilaration. But his grief when I leave to go home can be very upsetting because I have to explain that I am going back to Bythorne and he has to stay in the nursing home. Anthony doesn’t always understand this and thinks I am abandoning him so it is always a difficult ‘goodbye’ but I think I have figured out how to make it easier with a bit of banter – not sure yet.

61 responses to “‘At home’

  1. susanpoozan says:

    You are so brave and resourceful.

  2. What matters most is that you are there. x

  3. tersiaburger says:

    So much pain. I am so sorry. Much love

  4. FlaHam says:

    Julie, your continued courage just amazes me. The love you share with Ants would be cherished by so many couples. I think it is wonderful that you have found the rhythm with Ants, and the notebook is pure genius. I am not surprised that saying goodnight or goodbye each evening is troubling for Ants, thru it all I think that is the one emotion I have the best handle on. But I also suspect there is such inner joy each day when you return be it noon or 2 for Ants. Julie you’re an amazing woman. Take care, Bill

  5. Terry says:

    Making a journal is a good idea. I wish I would have done that. Hugs

  6. Judy says:

    As you adjust to this new phase of Anthony’s illness, I think referring to it as “making myself at home” is a beautiful sign of acceptance.
    The difficulty of saying goodbye is not just when you leave. All of this is simply a “long goodbye” and you are inspirational in how you are looking for moments to treasure while in the midst of intense pain and sorrow. Thinking of you always.

  7. It’s so good that you have 2 ‘homes’ and know what you’re doing each day.. also great idea to keep a journal.. Diane

  8. I love that you go every day in spite of how much it hurts to say good bye. You’re a beautiful person Julie. ❤
    Diana xo

  9. K. A. Brace says:

    Jules, how are you and yours? I wanted to let you know I’m running The Clock Collector at the end of the week. Hope you don’t mind. >KB

  10. Have you thought about slipping away without saying you are going. This might work on days when he’s sleeping. Only you know what is best. You are an amazing example of love in marriage, lasting a lifetime.

  11. I adore your love. Just adore it. As difficult as it is you find worth and value in Anthony and being with him. I don’t always see that in my job, or my world. No wonder your “his girl”. I love that you keep a journal of his words. I hope that he is still finding ways to make you smile. 🙂

    • jmgoyder says:

      It’s not hard anymore to go to the nursing home. Dunno what has happened to me but I absolutely cannot wait to see Ants every day and write his words down.

      • Maybe it has something to do with the huge adjustment you have all had to go through. You, putting yours last to take care of those beautiful men in your life. Then, when you had time, you made your adjustments…..and now you bask in your love. 🙂

  12. gardengirl92 says:

    Julie, Every time I come back and read about your love and struggles, I am amazed. You are an incredible person. Your love for your Ants is a light to the world and your strength and dedication is an inspiration to all of us who read your stories. Much love, Julie.

  13. tootlepedal says:

    Banter sounds like a good idea. I hope it works out.

  14. I sense a book somewhere down the line. I am very confident that you will find a way to leave Anthony without him stressing over it. You are so very amazing Jules 🙂

    • jmgoyder says:

      I am not amazing, Laurie. Off topic – I made mustard sauce tonight and it was bitter – any suggestions? (I do these kinds of things occasionally!)

      • I do get what you mean when you say that you aren’t amazing. You are doing what needs to be done for you to be with the man that you love. I think that many of us are trying to communicate how we feel for you and while we are imagining ourselves in your shoes we are responding to the fear, the hope and the possibility that we face in that situation. If that made any sense, I hope.

        Now to the sauce. In my experience, sauces are all about proportions. I have made mustard sauce where there was more cream than mustard because with mustard a nice bit goes a long way. Also if you made the sauce in the pan after you sautéed something, if the drippings were burnt, that could make the sauce bitter, the same goes for if you sautéed garlic and added the mustard, burnt garlic is bitter as well. It might be the mustard itself, not all mustards are equal. It is hard to say without knowing what went in the sauce and the other ingredients. Let me know if this was helpful. love and hugs me

      • jmgoyder says:

        Wow – I now know where to go for food advice (well, I already knew!) Thanks so much for this, Laurie. Strangely, the sauce tasted okay after resting a bit. I have to go to bed now but will take up this conversation again soon, Chef! xxx

      • Evreything is better after a proper rest. Have a restorative sleep and beautiful dreams. xoxo

      • jmgoyder says:

        Wow – you are amazing! Thank you for the proportions advice – I am getting really interested in cooking, partly due to your food stories, Laurie!

      • I am always more than happy to share and to help Jules! Happy cooking 😀

  15. ksbeth says:

    it sounds like you are adapting and finding the best ways you can through all of this and i admire you for this. i know it is a huge challenge to say the least –

  16. Good to hear that your routine is sitting right with you, it is sad about the goodbyes but there is little that can be done except to try and lighten the mood when the time to leave comes

  17. Vicki says:

    Love the idea of your journal.
    A book of memories to cherish and re-read as time goes by.
    Our memories falter as we age (let alone with PD or Dementia), so this will be the perfect MemoryStore of this time in your life.

  18. ingridrick says:

    A journal is a great idea – I love that. I would say that, rather than saying goodbye, would it not be easier and less stressful to Ants if you just said I’m just going out (to the shops or to drop something off somewhere etc), Would you like me to get you something while I’m out? Just with his altered sense of reality I would think that would not cause the stress of saying I’m going home, when perhaps sometimes he may think he is already at home with you.
    Just a thought …

  19. It must be so comforting to Anthony to have you there. Late afternoons can be very confusing times for dementia patients, as we found out with my mother-in-law (she had Alzheimer’s). Your loving thoughtfulness is an inspiration.

  20. I can feel that you are in a more accepting and contended place, even though it is still difficult for you. You have come a long way and are such an inspiration.

  21. Judith Post says:

    Good luck with the banter! Anthony loves to laugh. So do you.

  22. I love that you are writing down what he says, it may make more sense than you realize:) so glad that you are able to find a way to spend time together and feel more at home. I bet that helps you both. by the way how is that boy of yours?

    sending love and hugs my friend

  23. Trisha says:

    I think the journal is a great idea and hope the banter helps the parting become easier for both of you. It must be so very hard.

  24. Rhonda says:

    so good to see you jules…xoxo

  25. lensgirl53 says:

    Ants is blessed to have you, Julie. And I know you feel the same way about him. Peace to you and Ants.

  26. You are a strong and resilient woman, Julie. You have the strength to keep trying, and never giving up. Sorry the good-byes are so hard. I hope you find some solution to that.

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