Changes, Choices and Chickadees

May 23, 2013 | My Jottings

When I woke up this morning around 4:50, the sun was already beginning to come up over Lake Superior. The weather forecast says the rain is gone for a while and sunny days are ahead. Literally, at least. Figuratively? I’m not sure about that one.

The birds start their singing right at sunrise, and several times this month I’ve heard a cardinal in the distance, but haven’t seen him yet. We have a couple of feeders on our front deck, and one with suction cups stuck to our front window, so several times during the day we can watch birds feed there just two feet from us.

black-capped-chickadee-at-feederThe chickadees are the frequent flyers, closely followed by many variations of sparrows. We had a blue jay at our pole feeder yesterday. We love how polite the chickadees are. While other birds just fly right to the suction cup feeder and cause the bird already there to quickly fly off, the chickadees perch on the deck railing and watch, only taking their turn when their friend has gotten his seed and flown out. They seem to have it timed perfectly; just as the chickadee in the feeder finds his seed and secures it in his tiny bill, he flies out and the next one on the railing flutters in that very same second. Maybe there’s a tiny manual out there called The Chickadee Book of Etiquette. 🙂

We’ve also had many purple finches. I’m not sure why they’re named purple finches since they seem reddish to me, but we love to see them. They look like common sparrows with a blush of red painted transparently over their top brown feathers. Do you have purple finches in your area?

purple-finch-on-evergreenIn a little over two weeks I’ll be having my knee replacement surgery, and I’m doing my quadriceps-strengthening exercises and making plans and lists for those who’ll be here caring for Michael and our Fosters while I’m away for three days and two nights. Dear friends have offered to bring some meals and I could cry from gratitude and relief.

Our original plan was for Michael to come down to Stillwater, MN with my friend Su’s husband Danny, and they would stay in a hotel together and come and visit Su and me in the hospital during the day. Now we’ve changed our plans and Michael will be staying home. He is becoming more confused with each passing day, and even though there’s no definitive test for this, his neurologist has implied that he is also developing Parkinson’s Dementia. Just this morning when I gave him a tall glass of ice water with fresh lemon juice squeezed into it, rather than take his morning meds with it like he usually does, he began to drop his pills into the glass first. I was able to reach out and intercept them, but when I told Michael to put them in his mouth instead of in his water, he said, “I sometimes do it like this too.” But he doesn’t.

I don’t know if any of you have ever seen a Parkinson’s patient festinate (another word for it is fenestrate) but it’s one of the saddest things I’ve ever witnessed. My husband used to be the epitome of the Minnesota outdoor man. He loved to hunt and fish, he was strong and active and had energy that never flagged. He was up and down ladders a hundred times a week, walking with perfect balance on scaffolding and roofs many stories high. He grew a beard for half the year and with his plaid flannel shirts, jeans and work boots, I often thought he looked like Grizzly Adams. Now Michael’s brain lies to him and tells him a normal doorway is too narrow for him to pass through, and he does the awful rapid shuffling called festinating as he tries to get into a room. Click here if you want to see what what a mild form of it looks like.

I read recently that relatives of Alzheimer’s patients say their loved one no longer recognizes them, but relatives of Parkinson’s patients say they no longer recognize their loved one. It’s horribly true. Michael’s personality seems to be fading away, and who I see every day is not a lot like the man I married in 1981 after only having met him one time. 

His face is often blank, his head sometimes bobs grotesquely, his torso dips and sways from the side effects of the only medicine there is for him, and his speech is almost impossible to understand. I know my Michael is in there somewhere, that his spirit is alive and thriving, but unfortunately I don’t have spiritual eyes to see that yet. I believe it in faith. He and I used to read the Bible together almost every morning, and pray together for our children and friends. When I used to share a burden with him, he would take my hand and pray with such strong and quiet faith that I almost always felt better, and certainly didn’t feel alone. But it’s not like that anymore. I haven’t felt like reading with him much. And I have asked him to pray with me, but he forgets that we’ve prayed before an hour has passed, so I don’t ask so much anymore. And I often feel alone.

Doctors say that PD patients are impaired in the executive functioning part of their brain, the part that helps them look at a suitcase that needs to be carried and carry it, or a drawer that needs closing and close it, or feel a stomach that’s growling and feed it. It’s the part of the brain that helps us make decisions and gives a person the initiative to do what comes next. Michael began to lose that a long time ago. So now when I have to tell him to put on his jacket or eat an apple or drink some water or brush his teeth or wipe his nose, it makes me feel like his mother. And even though I’m working hard on not complaining and regularly counting my blessings (of which there are so many), I hate having to tell him when and how to do basic things. And I can tell he doesn’t like it either.

So when I woke up this morning I thought to myself, is this living? And the answer I gave myself was, yes it is. It may not be what you would choose, but you are alive and Michael is alive and God has given you this day to love, to be loved, and to experience His sufficiency and grace. 

So today I resolve to watch the birds that come to our feeder and rejoice in how beautiful and miraculous they are. I will hug and kiss my husband and treat him like he’s still in there, no matter how much this ugly disease has masked and stolen from him. I will make us each a pineapple and almond milk smoothie and close my eyes while I’m tasting it, and thank God for food and taste buds and pleasure. I will turn on some music that will help me lift my heart up to the Lord, and I will sing along with it and dance a little bad-knee-jig for a minute or two.

And if we are headed into the desert, I will remember that Jesus has been in the desert before us, and that with Him we have nothing to fear.

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Comments

  1. Pat says:

    Oh Julie, I felt so sad for you and Michael reading this. I will continue to pray for you and I appreciate your attitude. I wish things were different – it’s upsetting to see what Parkinson’s has stolen from Michael. You are wonderful, my friend, and I always look forward to reading your blogs.

  2. Just Julie says:

    Thank you Pat. What would I do without you and the SAGs? You bless me all the time, and I also thank you for making time to read my little whiny ramblings. xo

  3. Ember says:

    Thinking of you and praying for you and Michael, and all your family and household, my dear, every day. xxx

  4. Just Julie says:

    Resting in that means so much to me Ember. Thank you…xo

  5. Shari C. says:

    Dear, sweet Julie…just finished your post and am sitting here writing with tears filling my eyes and a heavy heart that aches for what you and Michael are experiencing…I am so sorry…I send you many hugs across the miles. I had an uncle who had Parkinson’s, so I know just a little bit of what you are going through. This life that we are given is such a combination of both bliss and suffering.

    As I read your post, I am touched with such a deep profound appreciation for all of your love and faithfulness. Your spirit blesses me, and I trust all who read…I will keep praying for you, and Michael. May God’s Spirit continue to fill you with His great strength and gentle comfort each new day so that you can make it through this desert experience…xoxo

  6. Just Julie says:

    Shari, Thank you so much for the love and compassion that flows from your words. Your prayers are a gift. I’m not all that you say, but I lean on His grace a lot these days. xo

  7. Patty says:

    I have wet eyes and no real words to comfort you. Your faith is giving you comfort. I can only offer friendship, from a great distance, and via the internet. But please be assured, that it real and it is here. I will continue to pray for all of you as you face the long earthly good-bye together, knowing that you will be reunited again, both of you fully functioning in the life that is endless. Love you!

  8. Just Julie says:

    Thank you for your kindness, Patty. My faith in Christ is a great comfort, and Michael feels the same way. So appreciate you Patty… xo

  9. Roberta says:

    Julie, I want you to know that I am, and will be holding you and Michael in prayer. I so appreciate your truthful openness with us about your feelings—such courageous honesty. The two of you are carrying quite a burden, uphill. And, again, you are setting the rest of your family, and all of us, an example of grace-filled love. From what I have observed, in my experience of the world, this is, rare, indeed.

  10. Just Julie says:

    I thank you for your prayers as well, Roberta. I am so blessed by the people who visit here. I am not that good of an example of grace-filled love, truly. Every day I fail, but I keep reminding myself I have a God who expects and forgives our failures. God bless you today… xo

  11. Kay in Cornwall says:

    Dear Julie, I think all who have commented above have said just about everything I would want to say. I wish we lived closer so that I could give you a great big hug.
    You are an inspiration to me because although my Alan’s condition is so limiting at times, your strength and character are examples to me of how to cope. I also fail every day but I too am grateful that God forgives so generously.
    As always, love to you and Michael.
    xxoo

  12. Just Julie says:

    Thank you for your loving words Kay. I’m still holding on to the hope that we could come and visit Tony and Ember and you and Alan someday! Grateful for you… Xo

  13. Helen in Switzerland says:

    You are a truly beautiful person Julie – you have no idea what an inspiration you are. I admire you so much. xx Helen xx

  14. Just Julie says:

    Helen I wonder if I should publish these glowing things you’ve said. If you spent any time with me, you’d quickly see that I’m just like anyone else. I don’t think many people around here are being inspired. 🙂 But I appreciate such kind sentiments and I aspire to come even close to them! 🙂 xo

  15. carole says:

    I am so honored to know and love you both dearest friend! Thank you for being a role model of long suffering to me!
    Praying for you both.
    xxoo
    Carole

  16. Just Julie says:

    Carole, yes, I’m a role model of long-suffering, all right! Not a very good one, but certainly a model for those wanting to do things differently. I enjoyed quoting your wonderful son on the blog recently, dear Carole. 🙂 xoxo

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