wings and things

Rollercoaster 2

on August 21, 2016

I will soon be facilitating a carer support group so I guess the last couple of weeks will help. The trauma of seeing Anthony unconscious, then the joy of seeing him okay again, over and over again, especially lately, has absolutely done my head in.

Today, we had a multitude of visitors and it was wonderful – especially when my great-nephew sat on Anthony’s knee! And yet yesterday, Ants was in bed, sleepy-headed and not particularly responsive to visitors.

It is hard to admit these things, but I would like to be honest about how I feel, in the hope that others will be able to relate and not feel guilty. It would not be possible for me to admit these feelings if I didn’t love Anthony so the following observations and questions are addressed to him despite the fact that I can’t speak to him about these things:

  1. Ants, we have never talked about your death or made funeral arrangements, so Ming and I have no idea what you want. We are seeing funeral directors next week with our various questions.
  2. You were like a dead person yesterday, but today you were back! I know you don’t know you are dying and I know you don’t even know you have dementia, but I also know that you know me/us.
  3. Every time, especially lately, that I think you are nearly dead, I get panicky and grief-stricken; then you come good again.
  4. Anthony, the other day, when I had my finger on your pulse, I did actually want you to die. I’m sorry, but you were unconscious anyway and I thought it would be easier.
  5. You are 80, Ants. I know you keep telling me you are 16, and asking where you mum is, and seeing baby Ming in every corner of your room, but then, all of a sudden, you are back in the here-and-now.

There must be a better way of caring for carers and I am very interested in helping in any way I can.

I want Anthony to live.

I want Anthony to die.


21 responses to “Rollercoaster 2

  1. Your words, writing it out, honest, and asking questions helps those of us who are not carers, too. You remind all of us that being real, honest, facing hardship and sorrow and difficult times with grace is possible.

    Thank you dear Julie. ❤

  2. I love your raw honesty Julie, I always have… Can’t think of a better person to facilitate the carer’s group. ❤
    Diana xo

  3. Judy says:

    What I think is the central issue here is suffering. Wanting this to be over is completely about your fear that Anthony will suffer. There is nothing worse than seeing someone we love suffer.
    This whole process of losing him has been going on for such a long time. You are exhausted and you are suffering. It is natural that you are tired and also want your suffering to end.
    That is why anticipatory grief is so horrible. I am so sorry.
    Peace is ahead for both of you. When Anthony is gone, you will realize how much you’ve gone through and the processing of it will happen over time. Right now, I know you’re in a grateful place that Anthony is blissfully unaware. But you love him so and long for his comfort – instead you are very isolated with your grief. That is the nature of grief. Ming is also grieving in his own way. Trust me, you have done your time and when everything is behind you – a new life awaits you that you cannot imagine at this time.

  4. You are doing such important work Jules. You are amazing! Love you Jules Hugs xxxxooo

  5. bulldog says:

    When my Dad reach a similar state, I actually prayed for him to pass… when he was begging me to end his life I felt it would be more of a blessing if he would pass to a better place than to suffer here on earth… it was a surprise the day he died, he actually perked up as if he was recovering and an hour later he passed, which I still to this day think was a relief for him and us that watched his suffering for months…. Sterkte Julie…. Sterkte…

  6. Nothing easy about this. And really there are no words other than I feel you what you are going through. And Ming. And Ants. ❤

  7. Terry says:

    I believe this roller coaster you are going through now is the most tiring, confusing, admitting, guilt, tears, laughter, memories, hoping, praying time of this illness. I wish you didn’t have to ride this roller coaster, and it also reminds me very much of my own ride. I had many of the same thoughts as you are having. Don’t feel guilt. It is the body’s mind getting adjusted to reality. It is a process. Love you, big hugs for your day.

  8. Krystal says:

    Julie, my team are partnering with Red Cross to provide this carers session in Busselton next week, would you consider attending?!topic/swapmail/n_sGnuOmDPA

    This period is never easy and never the same for any two people but the emotions you describe are common. You are not alone.

    Krystal x

  9. That’s the conundrum ! We want both! and always I say ‘take care Julie’ ! Diane

  10. So raw. So powerful. So truthful. To the best of my ability Julie, this makes sense to me. You are going to be such a help to others, and in doing so, perhaps help yourself. ❤

  11. I can understand your dilemma. hope you can get the carers support group going.

  12. susanpoozan says:

    I so admire the way you are coping, what strength you have.

  13. your honesty will help a lot of people…me included….

  14. tootlepedal says:

    Tough feelings to have either way. I hope that writing about them helps you and others.

  15. arlene says:

    May God give you strength to face everything Julie!

  16. Yeah get you wanting him to be at peace and not wanting him to leave you at the same time it is hard and each day is a challenge of mixed emotions

  17. Vicki says:

    Such a difficult mixture of emotions to deal with. I am hoping by your honesty and open writing of the truth of the matter, that it will help others deal with their grief and fears too.

    There seems to be this unrealistic expectation of people dealing with the loss of a loved one. It’s ok to cry, to be open with your feelings and to be honest. It’s not ok to bottle it all up and be ‘strong and brave’.

    It takes great courage and you’ve shown it in so many ways.

  18. susielindau says:

    This is so intense and yet something so much of us face. We experienced the slow goodbye with my dad. After my mom got over the shock, she did great. In a lot of ways, she’s happier now than I’ve seen her in a long time. The stress of all of it can be so hard. Hang in there, Julie. A funeral director will put your mind at ease. He was the first person to break through my mom’s shocked state and got her laughing.

  19. ksbeth says:

    being the carer for someone you care for is incredibly challenging and you have shown amazing strength and courage in the face of all of this, it’s okay not to be strong at all times, no one can be –

  20. paulaacton says:

    I think you helping others will also help you, not only find the strength to continue through this terrible journey but also to go forth afterwards and help even more when you have the time and space to write the book. I think the most important thing that carers need to know is there is no fixed path, dementia effects everyone differently, my gran would know who certain people were, but me for example she knew I was a relative but was not sure which one at times, and frequently gossiped to my about my parents not linking me to them, she also mentally killed off her sister (who was alive and well) and was embellishing the lives of many of the family. At times she had brief periods of clarity where she knew she had dementia and would be upset by what was happening to her, and at times she could act like a petulant child. As another commenter said it is okay to not be okay, finding a support group like the one you are going to be running is a wonderful safe place for people to be able to admit their negative feelings and especially those that make you feel guilty. I loved my gran to pieces and it tore me apart watching what happened to her but I felt immense guilt at one point because I wanted her to go because I was also watching my mum struggling so much to cope with it all, and it was making her ill.

    Your group and your experiences will help so many others, and allow them the space, and understanding to admit the feelings the fear being judged for xxxx

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