wings and things

Easter Saturday, Parkinson’s disease and a picnic

on April 19, 2014

Today, Ming and I picked up Anthony from the nursing home, took him out to my mother’s place, picked her up, then went down to the foreshore near her home for a picnic. It was a perfect day, sunny, but with a breeze, so we grabbed some takeaway (sushi and chicken rolls) and managed to find a gazebo right near the water. Now that Ming’s back has half healed from his second spinal surgery, he insisted on doing all of the maneuvering of Ants in and out of the car and the walker/wheelchair we recently bought, and, except for when we picked Ants up, he was pretty mobile – bonus!

After our main food, my mother and I went to the nearby shop and bought ice-creams for dessert, two banana paddlepops for Ming and me, a magnum for her and an ice-cream sandwich for Ants (he loves these). We were surrounded by seagulls of course and Ming, like a little boy, loved chasing them away.

Then we went for a long drive around the estuary until we got to a semi-hidden beach where Ants said he wanted to have a swim. Having never swum in his life, this was a funny request, so we simply drove back slowly, dropped my mother off at her house, then headed back to the nursing home.

On the way back, Anthony became even quieter than usual, knowing, I guess, that the outing was nearly over, so I turned the car radio up and the three of us bopped a bit, with Anthony tapping his leg and Ming complaining that the radio station was too mainstream and that Ants and I had no taste – brat!

Once we had delivered Ants back to the nursing home room, and got him comfy in his armchair, he was showing signs of fatigue, confusion and the kind of misery that sometimes hits him when we depart. He loves the way Ming and I banter, so when we leave him, despite turning the television on for him, I can see how the silence of our absence hits him. I can see it in his face when this happens because he raises his chin a bit, sort of defiantly, and gives us a glare that is a mixture of love and grit.

He knew that Ming and I were going to a barbecue tonight at a friend’s place and that it would be just as impossible to take him to this as it would be to have a swim in that beautiful ocean. Usually I don’t tell him about these social occasions, so that he doesn’t feel left out, but this time I had to in order to explain why we had to go.

If it weren’t for the various photos I’ve taken over the last few years, I probably wouldn’t see as clearly how much Anthony has deteriorated. The photo I’ve included here is from a bit over two years ago when we were still able to do the restaurant thing easily. Back then, he was more upright, more mobile, more able to eat using a knife and fork, more vocal, more himself. Now, going to restaurants or to people’s houses for a sit-down meal is very hard because, with PD, he is only able to focus on one thing at a time (one voice, one activity, one sound), so the picnic idea was much easier.

When we picked Anthony up this morning, the nurse-in-charge said he had become aggressive again, punching out at the carers, and swearing (totally out of character), so I promised to have a word with him and I explained to her that it is part of the dementia engulfing the PD. She nodded in understanding but when I mentioned it to Ants he just muttered that he had to fight because he is often kidnapped.

I am sad, yes, but no longer ‘tragified’ because what would be the point? This is only going to get worse, not better, so the four of us just have to accept this and do the best we can (I include my mother in this foursome because she is a rock and very much a part of our own little family dynamic).


51 responses to “Easter Saturday, Parkinson’s disease and a picnic

  1. susanpoozan says:

    Well, however sad you may be, at least you managed an lovely outing all together, well done. What a splendid team you are.

  2. You had a great day out so you’re right, no tragifying 🙂

  3. mimijk says:

    Ah Jules, as this insidious, horrid disease progresses, comments and actions that one would never associate with Ants will appear, sometimes with reason, often not. I know you know this, and the carers know this too. PD is an insidious cruel thief, leaving little behind. I’m with you (albeit on another continent) all on this journey – at least in my heart – and I know how inexplicably hard it is. And yet, you and Ming and your mom and Ants – are doing more than ‘the best you can’. You are doing the best. Period. Full stop.

  4. It sounds like you had a great picnic. Love the family photo, Julie. My mom had been getting very agressive. The doctor prescribed anti-paranoia medication, and she seems much calmer and more content these days, although I’m sure it’s making her sleep more. Swings and roundabouts. ;? Happy Easter, to you all. 🙂

  5. It sounds like you had such a beautiful day…and while Ants gets sad when you have to go… for the time he was with you he was happy …. he was content… and he knows he is very much loved…. Diane

  6. artfulanxiety says:

    It sounds like a wonderful little outing!

  7. Colline says:

    It is good to have photos like these that remind you of better times.

  8. lensgirl53 says:

    Julie, I just could not read all of this because of the overwhelming tears. You write so well and I feel everything you tell. I worked in a nursing home many years ago when I was young. I still remember those faces of the elderly who probably had Alzheimers …those unspeakable emotions that seemed conflicted and written on faces that could not quite speak but showed every ounce of their frustrations. Ants is so blessed and I know he knows this from all you have shared. Even in those frustrated grimaces that he makes because he is very aware of your impending absence…he knows he is blessed to have you and Ming.

    Ming is a treasure…as I am sure you know. His dislike for mainstream music reminds me of my Brandon, although over time, Brandon came to love all kinds of music..even his mom and dad’s oldies music. HEY, even some of his grandmother’s music. I found some Tony Bennett on one of his personal made cds! SO there is hope for Ming. LOL

    I DO love reading your stories of life with your family. I pray for your continued strength and tenacity.

  9. Julie what a wonderful yet sad day for you all. I so admire your strength and patience with Anthony, I tend to not have them when I need them with my chair sitter. Funny how the men in our lives or mine anyway has always been the one to spoil and care for me, my gentle giant and now, now I must care for him in his diminishing capacity and it wrenches my heart. How you do it for Ants, well I can only admire you for that strength and love. God bless you my friend have a happy Easter.

  10. You made me think of my grandparents a few times while I was reading about your wonderful outing with Anthony and the rest of you. My grandfather in France had never learned to swim, neither did my grandmother or my uncle despite living 45 minutes away from the ocean. My grandmother in Florida who in the end at 93 started suffering from dementia punched out an orderly in the nursing home where she was staying. She was very tough and strong, we thought that her right hook had left her after all these years but evidently it hadn’t. Dementia is so very difficult and when it is accompanied by another illness, I can barely imagine. I am so glad that the day was a success, big hugs 😀 xox

  11. Terry says:

    I am so thankful you all had a special day together. The ending will be forgotten as the wonderful memories take over. Happy Easter Julie, love you

  12. Terry says:

    I am so thankful you all had a special day together. The ending will be forgotten as the wonderful memories take over. Happy Easter Julie, love youi

  13. I can sense that you are feeling better since Ming’s court case has been over.
    It was great that you were able to have a little picnic for Easter Saturday.

  14. Judy says:

    My mother also helped me so much during times in my life where I felt overwhelmed. It is such a gift and I treasured her. But I understand also how fraught with worry you can get about the future. With a teenage son and elderly mother – there is so much change in your life you could anticipate with dread. What I love about you is how you are jumping in to make the most of such a difficult situation. You are making memories and living as best you can under very challenging circumstances. Feel my hug.

    • jmgoyder says:

      It’s late here (nearly midnight) so will reply properly tomorrow my beautiful friend!

    • jmgoyder says:

      Thank you so much for your deep understanding and empathy Judy xxx

      • Judy says:

        Funny – that’s how I feel about you! I hope I didn’t dampen anything for you either. I used to get overwhelmed imagining life without my mother. But I always felt so grateful to have had that special relationship of knowing she was there to pick me up off the ground. You are handling Anthony’s decline with about as much grace as any person could in the face of such a monstrous disease. If I can comfort you – I’m glad because I feel that way about you, too.

      • jmgoyder says:

        You are wonderful!

  15. Happy Easter. Even with the difficult times, it’s okay to be happy and enjoy the Easter weekend.

  16. These tidbits of stories would make an awesome book for others who will go through PD with their loved ones Julie. ❤
    Diana xo

  17. ksbeth says:

    wonderful pic and yes, it will get worse, but enjoy each moment just as it is. maybe possible to send a video of you and ming, talking, doing everyday chores, the peacocks, etc. that he could watch when he is missing you? unless it might upset him worse? you could change it up every so often –

  18. Your outing sounds so beautiful. Three generations of family that get along so well. And with so much love. Happy Easter Julie. And I love the idea that you and your men were driving about singing songs together. 🙂 Beautiful.

  19. Praying that joys come even in these hard days. Life is so hard sometimes. My hubby’s mom is now in hospice care as of Good Friday. 8 weeks from a fall, a break, to this, and we sigh. Lord, help.

    Oh, by the way, tell Ants that love never FLAILS. That’s what I tell hubby when he flails in his sleep. 🙂

  20. It is a sad slope you’re on with your beloved. Thankful for the outings and moments that intersperse it with sunshine. Happy Easter my friend.

  21. It is so sad to see a love one deteriorate, alzheimers is such a terrible disease but at least you are still able to take Ants out at times, we would love to be able to take nanna out but it is just not possible any more, she doesn’t talk really and as you may know she is mostly bedridden

  22. janeslog says:

    He’s smiling and looks happy in himself. Sunshine helps lifts moods. We have had sunshine since Good Friday and it has lifted everyone’s spirits, but it is still a bit chilly. As usual people are running about in tee shirts, but it is not that warm.

  23. FlaHam says:

    Julie, You are a brave soul there is no doubt. You are a very caring soul. And somtimes the brave and carring do battle. I have always said that the relationship you have with Ants is beyond special because it is. The brave and caring will do battle from time to time, surprisingly you don’t really lose, and Ant’s doesn’t lose either, but your love continues to grow. Take care, Bill

  24. Rhonda says:

    Glad you had the day…sounds wonderfully normal.

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