wings and things

Dementia dilemmas

on December 4, 2016

We have been lucky so far in that Anthony has not been privy to his own experience of dementia because it has been so gradual, over so many years. He is not distressed about having dementia because he doesn’t know he has it and this is a blessing. In fact, Anthony is hardly ever distressed about anything, which continues to amaze me. I reminded him yesterday that he was the best person I had ever met in my life. He liked the compliment but was a bit mystified at my rather emotional expression of such praise.

Anthony: Why?

Me: You accept the things that come your way; you don’t let the Parkinson’s disease get you down; you are calm and content; and you are so good for me!

Anthony: You’re not so bad yourself.

Me: Well thanks, but you know how I am – intense, frazzled, up and down; you are kind of like a balm!

Anthony: Well I wouldn’t go that far, Jules.

Me: I’m the one supposed to be supporting you but it is mostly you who supports me – emotionally I mean.

But this afternoon, we had a completely different kind of conversation:

Anthony: Okay, let’s go.

Me: Where?

Anthony: I want to go home to see Mum.

Me: But she isn’t there, Ants.

Anthony: Where is she?

Me [thinking oh no, I have to lie again!] She’s as J and R’s (his sister and brother-in-law, both deceased).

Anthony: Well we can go there then [trying unsuccessfully to get up out of his armchair]

Me: I think they’ve gone out for lunch.

Anthony: Well we can join them and then go to the farm.

Me [grasping for straws]: But what if the doctor comes?

Anthony: You always do this.

At this point I decided to go quiet and put the television news on in the hope of distracting Anthony away from the topics of his mother and the farm. I was holding his hand and could sense his restless distress in the way he was squeezing mine and trying to get out of his chair. It was 2.30pm, by which time Anthony’s mobility is usually shot and his lucidity faltering, so I decided to wait silently in the hope that the mother/farm conversation would be forgotten.

While I waited, I could see from the corner of my left eye that he had turned his face towards my profile, imploringly, but I just pretended to be lost in the ABC news. I ignored the wave of sorrow that suddenly washed over me and tried to get my thoughts together, just in case….

Anthony: Hey, hey [squeezing my hand harder]

Me [looking at him in mock annoyance]: What now!

Anthony [with a little smile at my retort]: I don’t understand why you don’t like Mum anymore. Why can’t I see her?

Me: Okay, Ants, I didn’t want to remind you of this because I didn’t want you to be upset but your mother died many years ago. Remember? I was with her in the hospital when she died and the funeral was in Perth where she is buried in the K cemetery.

The expression of bewilderment on his face was heart-breaking but he coped with the same kind of resigned acceptance he expressed all those decades ago when his mother did die.

Anthony: Thank you for telling me, Jules.

Me: Are you okay, Ants?

Anthony: Not really.

Me: What can I do?

Anthony: Can you just take me to the farm – my farm?

Me: Okay, now I have to tell you another upsetting thing, Ants. You are in a nursing home and I can’t lift you anymore so we can’t go back to the farm – well, not today anyway. Ming gets back from Perth tomorrow so maybe then. That way he can help me.

Anthony: You always say tomorrow.

Me: Please, Ants! I would bring you back to the farm right now if I could. I can’t lift you! I love you with all my heart but I just can’t manage you physically. That’s why you are in a nursing home!

Anthony: But I’m getting better every day. Why don’t you believe me?

Me: I do believe you – I absolutely totally believe you but you have to trust me too okay?

Anthony: Don’t cry, Jules….

It’s okay, I am not crying now but I wanted to write this situation/conversation into my blog in order to show how easily the past and present can either collide, or slip and slide in the mind of someone who has dementia. As Anthony is usually so accepting and content, I wasn’t expecting to have to negotiate my way through such a complicated conversation. I think I managed it fairly well, but I could have done better and I wrestle with that.

On the other hand, these kinds of dementia dilemmas are what so many of us face. I am so glad to be volunteering for the various organisations that focus specifically on dementia, on the carers and, vitally, those who actually have dementia – like my wonderful Anthony.

36 responses to “Dementia dilemmas

  1. To my heart, you handled it beautifully Jules. You were kind, compassionate, and honest.

    I am crying with you and holding space for the love that flows between you both to flow into my heart too.

    You are beautiful in my heart.

  2. I don’t think you could have handled it any better, Jules. You are amazing. ❤️

  3. susanpoozan says:

    I agree, no one could have handled the situation better.sometimes honesty is the best policy.

  4. I think you do wonderfully well and to document it so publically is so brave. I know you probably don’t think you are brave but you are. hugs across the world

  5. Dementia is so hard to deal with from both sides – the person who has it and the caregiver. It’s a lose-lose situation, and you just have to deal with it the best way you can. I think you’re doing a pretty good job.

  6. judyrutrider says:

    Sometimes you break my heart with these ruminations and sometimes you inspire me to rise to the challenge of my own mum’s care. But always, you show me the way. Revel in those moments of lucidity when that person I love shows herself, and accept the times when she’s lost in the fog.

  7. Judy says:

    Wow, this whole dialog was so sad and gripping. It’s like dealing with a child and telling them something horrible. You have faced this so many times and there’s just no easy answers. Your love continues to shine through.
    I remember calling it the “dance of dementia.” It really is a dance. Thinking of you with love.

  8. Julie, I want to write something uplifting and positive…but I know there is nothing I can say. Your writing stands on it’s own for the truth of what dementia does to you and Anthony and Ming. I appreciate your guidance and teaching us all. I feel as if I’m sitting right there watching this, but, I have the added information of how this is making you feel while it’s happening. And that is powerful writing.

  9. It would be distressing for you when he asks those difficult questions this post made me think of when pop told mum not to worry that she had said something that upset and made nan angry he would say just be patient as in a little while she will have forgotten what was said and be mum again and of course that is what would happen. Doesn’t stop the distressing feeling though when you know you have upset the loved one.

  10. Vicki says:

    I am so glad you are sharing these conversations on your blog, Julie. They would reassure many people in your situation…. that Dementia is difficult for family and carers and that they are not alone in their struggles, both emotionally and physically.

    I think it was C S Lewis who wrote “we read to know we are not alone” and in this day and age of the internet, that has been more true than ever (for those who are in difficult personal and life situations).

  11. Anonymous says:

    My beautiful daughter. I remember so well how you used to say years and years ago, when you were working in nursing homes yourself, while you were studying, that the patients who were best off, were the ones whose dementia was total, and who therefore didn’t really have to face the reality of their situations. Your beloved Anthony moves back and forth from each world, and his,lucidity and comprehension appears so suddenly, that it takes an absolute Pandora Box of wisdom to handle, which is exactly what you do. Let the tears flow sometimes. Soothe the sorrow.

  12. ksbeth says:

    yes, it can be so heartbreaking for everyone concerned at times. it always felt like a roller coaster to me, when dealing with my mom. you are doing all the right things, and helping others as well –

  13. tersiaburger says:

    Oh my precious friend how my heart breaks for you. Much love and great strength

  14. I think in those extreme conversations, you have to say whatever you need to say…whether it be the truth or something to alleviate whatever he is doing/saying at the time. You’re a good judge of that… Diane

  15. Tough conversation. I was told that with Alzheimer’s it’s often best to play along with the illusion and agree as this supposedly causes less upset. Is it different for Parkinson’s, or is it just different because of who Ants is?

  16. It would be easier if it was all or nothing, but the conflicting waves of lucidity and not seem so unsettling.

  17. For me this was the part that took the biggest toll. You just never have a sure footing with dementia or alzheimers from day to day, hour to hour, and sometimes minute to minute … All any of us can do is our best — in that moment! You do an amazing job!

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