One hour at a time, sweet Jesus…
June 27, 2014 | My Jottings
I keep wondering if I should put my blog into suspension until I’m not such a sniveler with a martyr complex, or if I should just keep unloading my spinning thoughts on it every once in a while as a sort of cathartic therapy. It helps me to write, but I’m quite aware that it isn’t always fun for others to read about someone else’s hard times again and again. For those who are hoping for upbeat posts and happy photos, I’m sorry.
I woke up this morning with a slightly bloody looking right eye, a strong headache, a constant rushing river sound in my ears, a swollen left hand, and a wooden neck. And that was after a decent night’s sleep. I have never had high blood pressure in my life but I wondered if mine was elevated. We used to have a stethoscope and sphygmomanometer because I used to monitor Michael’s borderline blood pressure, but Parkinson’s meds dramatically lower BP and he hasn’t needed medication for that in years. I donated the BP stuff when we downsized and moved to our current house. My dear friend Su and her husband Danny promptly brought their blood pressure monitor over and I was relieved and perplexed when my reading was around 108/70 numerous times. My sister in law asked if I had had a particularly high sodium meal the day before, and I had not. As the day has passed my eye looks better and my swelling has gone down. In fact, in this picture of my right eye, there’s almost no trace of the 
smear that colored my sclera this morning.
The first thing I thought when I woke up feeling so yucky was that the stress of being a caregiver had finally worked its way out, which is not a huge surprise, I guess. I have been well aware that there will be a limit to my ability to care for Michael as this relentless disease stalks his brain. I think I’m getting close to that point, and to even say those words makes me feel so unbearably sad and angry I don’t know how to put words to it. So I’ll write about that another time and move on to the rest of our day.
Even though it’s the end of June, the thermometer on our front deck never rose above 48 degrees today. The winds of the past several days have churned up the bottom of Lake Superior because today’s view is of a muddy looking lake rather than the majestic deep blue we usually see. We love the many moods of our big lake, though. Sitting at our dining room table and being able to see the water just a couple of blocks away always strikes me as such a gift.
When Michael’s home health aide Paul arrived today, I set out in our Highlander to have some time alone. I crave time by myself. These days my dear husband doesn’t even like me to leave the room. It’s like I’m his all in all, his security, his peace of mind. Sara told me recently that Michael isn’t really at rest until I come home, even though she is used to caring for him when I have appointments. If I need to put a load of laundry in, or clean the kitchen, I have to give him many reassurances that I won’t be gone long, in order for him to stay safely seated in his recliner. He is such a fall risk now, doubly so because he forgets he has walking trouble, and often tries to get up and walk without assistance. Like many PD patients, he has fallen, but thankfully without severe injury.
So late this afternoon I drove straight to the end of Park Point, a seven-mile long sand bar at the very southern tip of Lake Superior, parked the car by some water, reclined the seat and read for a while. I looked up now and then to watch a dozen greedy grackles feeding on something in a patch of park grass nearby. Have any of you read Donald Miller’s book A Million Miles in a Thousand Years? It was recommended to me a long while ago and I’ve downloaded it on my Kindle and have been reading a chapter or two every few days. On Park Point today while reading this book, I belly laughed out loud with my eyes squinched shut and my head thrown back. It felt so good. If you’ve read the book I’d love to know what your thoughts are.
After an hour I looked up the number to our favorite Vietnamese restaurant, called them on my cell and placed a to-go order for dinner. Michael loves Spicy Beef Cashew, extra hot, I like Spicy Chicken Cashew, mild, and our Fosters love the Beef, Vegetables and Fried Potatoes. All with white rice of course, and the best spring rolls in the universe. I reluctantly left my peaceful place by the lake and drove toward the restaurant, but had to stop for some time as a string of cars got “bridged.” A 1000-foot ore boat was chugging into our port and it took about ten minutes before our Aerial lift bridge had risen to accommodate the massive vessel’s passing from lake to harbor side, then lowered to allow traffic to cross over again. After picking up our order I drove home, knowing that Paul had given Michael a shower, helped him brush his teeth and dress in the clean clothes I’d laid out, and would be chatting cheerfully to Michael about fishing, about his interest in the History Channel, or the long lines at the new Chipotle that just opened in our city today.
We all enjoyed a delicious dinner. When we were done I helped Michael walk from his dining room chair to his recliner, then headed back to our bedroom to change into one of my super comfy and warm plaid flannel nightgowns. The Minnesota Twins are playing the Texas Rangers as I type this, and Michael never misses a Twins game if he can help it. Edith snoozes in the plaid wingback chair and Mildred jerks in her sleep on the couch near me as she chases chipmunks in her doggie dreams. It’s raining outside now, and my thoughts turn toward those in the northern part of our state near the Canadian border, where they’ve been sandbagging to protect homes from floods for weeks. The news people say that if the 1-2 inches of forecasted rain really falls, then huge Rainy Lake will rise again and homes will be flooded. 🙁
Tomorrow is our 33rd wedding anniversary. We don’t have anything special planned, but I know we will do some reminiscing. If Michael feels up to it and we can get him down the basement stairs and into the car in the garage, maybe we’ll take a little drive. Or even get ambitious or courageous enough to go out to lunch. Or we might stay home and watch an episode or two of Foyle’s War. I don’t like war and am not usually interested in movies or television shows about war, but I really like Michael Kitchen’s portrayal of laconic Detective Chief Superintendent Christopher Foyle. The show is extremely well done and is set and filmed in Hastings, England, where my friend-across-the-pond Penelope Wilcock lives with her family. I have a dream of visiting there someday.
In a few minutes I will wake up the schnoozing Schnauzers, put their no-bark collars on and send them outside for their last tinkle before bedtime. They will try to fib to me by coming back to the door without ever having gone into the yard, because they hate the rain so much. I will have to toddle out onto the front deck in my nightgown and say sternly, “GET out there and go potty! Go on!” and they will dejectedly obey, but they’ll look terribly forlorn when I let them back in and they shake the rain off their backs.
I will lock up the house, turn out the lights, help Michael get ready for bed, and then settle in beside him in our big bed to read as I listen to him quietly snore. I will reflect on the day, probably shed a few tears for all the ways I see I’m failing my husband as his suffering increases, and ask the Lord to forgive me and throw those sins of selfishness, self-pity and blindness from the East all the way to the West. I might play a few rounds of Words With Friends with Christy (a sister in law given to me by God), and Ginny (a long-time friend given to me by God), and Vicki (a new friend given to me by God and one who understands so much of what I’m walking through), and then I’ll turn out the light and be asleep myself within five minutes.
Tomorrow morning when the Lord brings the sun up at the edge of Lake Superior, I will look out our window at the glory and ask Him again to pour His love and patience and joy into me, this cracked and broken vessel that doesn’t seem to be able to contain very much. I will ask Him to help me pour His love out on my husband and give me strength for the day ahead.
And tonight, that’s about all I know.
Dear, dear Julie. I love that you write the good, the bad and the ugly. If you stopped writing about how things are truthfully going for you and Michael, how would we know how to pray for you? Yes, we can pray in the Spirit, but I like to pray with my “knower” too. : ) I feel sure I speak for many who stop by here, that we dont just come to be entertained, ( though you certainly are often VERY entertaining!) But because we love and care for you and Michael and honestly want to know how things are going. I dont often leave a comment because words are not my strong point. But I pray for you on a very regular basis. I pray for His mercies over both of you psalm 145:8-9 Im glad we are a body and can bear one anothers burdens. I call you my friend. Xoxo
You say words are not your strong point, Connie, but then why did yours pierce and uplift me so? Your comfort and love mean so much. I am so humbled by knowing you pray for us too — thank you, dear Connie. I feel blessed beyond measure to be family with you, connected deeply through Christy, whom we both love so much. God bless you, my heart-friend Connie… xoxo
Oh Julie,
you will probably never know what an inspiration you are to those of us out here who read what you write. I am always moved by what you say and your humble faith, your love and your patience shine through and always make me try to be a better person. I am so sorry to see how things are getting harder for you and wish so much that I were nearer and could lend a helping hand.
Please don’t stop writing – we readers won’t stop reading or praying for you and Michael and if that support helps you in any way then I’m glad.
It does sound like the stress may be really taking it’s toll though – I’m sure Michael will understand that you need some time for yourself too.
Take care my dear – I’m praying!!!
Love Helen
Helen, I’m always a bit in awe of how God brings friends into our lives, even dear ones we’ve never met. Somehow that doesn’t matter, and I think of how we have prayed for each other these past couple of years. Thank you for what you have written here…your words and prayers bring true comfort. God bless you today dear Helen… xoxo
Hello Sis:
I too feel that it is better for those who love you, to know how to pray for you, how to lift you up with HIM, to know where we need to press in more to HIM with our prayers.
Concerning your feeling low, and it perhaps feels like that it is all you feel, think back about all the years, months, days and hours Michael gave you great joy and provided you with much peace. He was your rock in the physical.
Think about the years of his caring for you and how he has showed his love for you in so many different ways over time past.
Think of the special things you still share today in your children and the family of another man who he made his own.
Think about the little surprises that he use to give you or do for you.
Think about the peace that you know you will have when that time finally comes, that you know he will be looking down in love at the foot of our Savior.
Think about the happiness knowing that he has set examples for so many – not only in your own personal family, but others that have known him or where he has touched their lives.
Think about your both someday standing in the throne room of God the Father, worshiping HIM together with all the praise in you that is possible.
Think about how you are set now in life to be the grandmother of your children’s children because of Michael.
You see Sis, it is the mind that controls all things, and yes it is a struggle to keep focused, and it is a battle to keep pushing in.
Life is not about the trials, but rather it is ALL about how we meet then head on with HIS direction, HIS guidance, HIS protective Spirit, HIS love, with HIS peace waiting for us on the other side.
What you may not realize is that your blog is a witness to HIM and for HIM to others.
It is showing others that may be in doubt or not knowing how to pick their own cross.
It is about showing not what you have had to give, but about what is left once you have given all that is in you.
It is like our Tithes, – It is not about how much we give, but rather it is ALL about what is left after we have given to HIM.
Keep pressing in Sis, keep your eyes on HIM, as at the end of this journey, you will see great joy and have great peace, perhaps some of it will be just because of Michael and his love for the Father, the Son and his obedience to the Spirit.
It seems strange but there comes a time when we all have to realize that it is not about us, but rather it is all about HIM.
There is great joy in memories, there is peace in knowing that the past has set up the abilities of today.
Give thanks in all things Sis, give thanks for all things, give thanks in celebration for what is in store – in the future.
I Love you Sis- you are in my prayers!
Me
Hello Larry, It is for the very things you mention that much of my anguish comes. I do think of all those things you mentioned, every single day. Michael is the best man I know. He has lived unselfishly and sacrificially and lovingly. And you are right about giving thanks. It’s hard to be thankful when you’re focused on how hard something is. Thank you for your prayers, Larry. Love to you and Christy…xoxo
Julie, you honesty and faithfulness are a gift to us reading your blog, to anyone who will put themselves in your shoes. I feel you judge yourself too harshly. Never anticipating what has happened to Michael, you are standing firm in your devotion to him, despite being buffeted about in each new physical and mental insult he is having to endure.
God knows the desire of your heart to be and do everything for Michael, but He also knows the feelings that come with being human—our limitations that I think need to be accepted with humility.
I think the comments above have nearly said it all. I use the word ‘nearly’, because Alan and I are both very conscious of the need for you to look after yourself as well as Michael. I so wish that we lived closer to you so that we could help in some practical way. Be assured that we pray for you and that we respect the honesty of your blogging.
Sending lots of love and hugs …
Roberta and Kay, thank you so much. I’m overwhelmed today with the people (like you) the Lord has brought into my life, their prayers for us, their kind friendship. You both are such blessings to me. God bless you and keep you…and give you joy. xoxo
Hi Julie from Houston!
I accidentily tripped over this site, your site at work today in the ER. You have everything in commom with my spiritual mentor Susan Phillips in California except her husband had Lou Gerhigs…so very many things in common. Anyway, please don’t stop writing…I need it..
In Him…
Kathy
Oh, by the way, the reason I landed on your site was that I was looking up “when you think you heard from God” and I read your mail about flying all the way to Cali from Minnesota and back home as your dad died. Yeah, that was one of those moments I’ll never umderstand…ever.
Hello Kathy! Thank you so much for taking the time to leave your comments and to introduce yourself. Welcome, and I hope you’ll visit again. Lou Gehrig’s is a terrible disease as well. I’m so thankful to believe that this earth isn’t all there is…as perhaps Susan Phillips is too? May God be with you Kathy, and I pray the Lord touches you in the ways only He could know you need… xoxo
Ohhh !….such confirmation that God wants you to keep posting Julie!
I “found you” by punching in the exact question as “kathy”
….& that was over 2 years ago now…so much has happened since then….bad, good …good, bad…..but the burdens are lighter when we help eachother carry them …& the joys multiplied when we can share the victories with friends. Jesus knows what we need & I’m always in awe watching Him move in His children’s lives through His “body of believers” throughout the world. Your blog is part of that!
What a day that will be when all “Just Julie’s” readers meet up in Heaven …..no more sorrow, tears, pain!???? Oh Happy Day! Such a wonderful hope we have to hang onto….& some days it does feel like just that …”hanging!”
Love you ….agreeing in the prayers you have asked for with you my “cyber space” friend…..
You have made me chuckle, Linda. Thank you for the word picture today to lift my spirits. All ten of us will meet up there! 🙂 xoxo