Wednesday, February 4, 2015

March 28, 2015 | My Jottings

On Wednesday when I arrived at the hospital, once again the nurses reported that there hadn’t been any notable change in Michael’s condition overnight.

Due to the high risk of his lungs filling up, his bed had to be kept at a 45 degree angle, so even though he was turned on alternate sides and changed every two hours, he never really got to lay down flat.

His eyes were closed, his left hand was gripping and opening, so the rolled washcloth was still needed, and I could see that his face looked more slack than it had the day before. He kept his mouth open more. wedphotoHe was still coughing occasionally and yawning at least twice an hour. He was able to chew and swallow the small ice chips we were giving him, and as anyone would do who was waiting for good news, we rejoiced at these things as if they were little arrows of proof pointing to his recovery, or at least to his coming out of unconsciousness. “He’s coughing! He groaned a little! Look, he can still chew the ice and swallow it!”

I think the most encouraging thing that happened on Wednesday was around lunchtime when several of us were gathered in Michael’s hospital room. Michael seemed a little closer to the surface than he had been earlier in the day, so I hugged him and kissed him, talked to him and told him about all the people there who loved him so much. I gently opened one of his eyes with my thumb and forefinger, and right at that moment our son-in-law Jeremy walked from one part of the room to another. Michael’s eye followed Jeremy’s movement very deliberately and accurately and we were thrilled. Of course then I opened Michael’s eye and got down close to him so he could see me and I whispered happily, “Hi Michael! We’re all here! It’s me! You’re in the hospital and they’re taking great care of you, and we’re waiting with you until you wake up a little more. We love you and you are going to be just fine!” And because we were certain he had seen with that eye, and we believed he could still hear us even though he couldn’t yet respond, we all quietly and lovingly told him how crazy we were about him, all throughout the day. All the way until dark, those of us there sang to him, prayed for him, let him rest in quiet, massaged his limbs, and kissed him.

Michael’s wonderful sister and only sibling Patty had been there every day, waiting with me and speaking so compassionately to Michael. I have never heard my husband utter one negative thing about his beloved sister the whole 34 years we were together. And she didn’t hesitate to show her devotion to him. What a beautiful thing! After Patty went home late Wednesday afternoon, her husband Joe came to the hospital, and for quite a while it was just Michael, Joe and me together. Joe saw Michael squeeze my hand, noticed things he felt were hopeful, and he told me, and later Patty, that he felt the next day Michael would be waking up. That sounded good to me, after all it had now been almost 60 hours since Michael’s seizure. If this was Todd’s Paralysis, we were already past the common 48 hour waking point and moving toward the 72 hour point, which seemed ominous to me.

Our neurologist Dr. McKee makes his rounds at night, not in the morning like most doctors do, and since I had to go home and make dinner for our Fosters by 5:00, I missed his visit. He called me at home that night after he had seen Michael, and said that when he had gotten close to Michael’s face and yelled his name, he opened his eyes briefly. That sounded encouraging, but as our conversation progressed, for the first time I thought I detected more caution, less optimism in Dr. McKee’s voice than I had the days before. When I mentioned that Michael had followed Jeremy with his eye and had squeezed my hand, Dr. McKee hesitated very briefly and said, “Well, that’s good. I do think it’s time to order another CAT scan for tomorrow morning, however.” I didn’t know then what he would be looking for in this second scan, what he expected to find, but I had a feeling Todd’s Paralysis was no longer what he thought was going on with my husband. I wanted to know as much as possible, so of course I consented for the scan.

After cleaning up after dinner I got into my nightgown, let the dogs out one last time for the night, and sat in silence in our room on Michael’s and my comfortable king-sized bed. It felt like tomorrow, Thursday, would be a momentous day, due to the second scan scheduled. I contacted our daughters to let them know about Dr. McKee’s call, and in spite of how tenuous things were seeming, we knew we were all drawing close together in love, praying for Michael, and trusting God for whatever would come.

I turned out the lamp on my nightstand, turned over on my side there in the dark, and listened to the deep doggy breathing of Edith and Millie who were curled in canine circles on Michael’s side of the bed.

Michael’s side of the bed.

For a brief moment or two, I allowed my mind to go to the sorrowful place of wondering if Michael would ever lay his eyes, his body, on that bed again.

The pain was too deep and the wailing too loud. When the spell of fear and grief eventually faded, I asked God for sleep, and I begged Him to touch my Michael, the light of my life, the man of my dreams, and to be there with him all night in his hospital room, so that Michael could feel He was there.

Tuesday, February 3, 2015

March 19, 2015 | My Jottings

On Monday night when I got home from the hospital, I sent out a few texts and emails updating people about Michael, and mostly asking for prayer.

When the sun came up Tuesday morning it was fourteen degrees below zero, which seemed apt to me. Our Foster women were of course concerned about Michael and I told them what I knew, and that we were all praying that he would wake up from this seizure-induced unconsciousness. All three of us exchanged hugs before they went out the door heading to their jobs, and I was touched when they both told me they’d be praying all day for Michael.

I was anxious to get the necessary morning tasks done — dogs out, dogs in, dishwasher loaded and started, and then off to St. Luke’s Hospital I went, leaning forward over the steering wheel I’m sure, trying to get there as fast as legally possible.

Has ever a woman been so excited to see her beloved? I can’t imagine even wives long separated from their imprisoned husbands, or the ones thousands of miles apart from their deployed servicemen, feeling any more anticipation than I felt that morning as I rode the elevator up to the fourth floor of the hospital, even though I had been with Michael just ten hours before.

I stopped at the nurses’ station on my way to his room and asked how he had done during the night. His nurse told me he had coughed and moaned off and on, and that his left hand had been so active they had put a rolled wash cloth in it to prevent him from rubbing his skin raw. But other than that there had been no change. He was being given the anti-seizure medication Keppra through his IV, because everyone was operating on the assumption that this almost comatose state was from a seizure.

I felt a rush of joy just to see my Michael. I hugged and kissed him and said all the things over and over I wanted him to know, and believed he could hear and feel everything, even if he couldn’t respond. I stroked his face, massaged his shoulders and legs occasionally, and sat with him all day. I was also happy to see that he could chew the small ice chips I placed in his mouth, and easily swallow.

I was so grateful for the family and friends who were there that day, sharing their hugs and prayers, tears and laughter.  michaelsarahospphotoEveryone was encouraged by the possibility that with Todd’s Paralysis, Michael could wake up at any time, but in the meantime it was like all my people had come to help me keep vigil.

This photo is of our youngest daughter Sara cuddled up to her daddy.

Late Tuesday afternoon I spoke to Dr. McKee and he told me he had seen this kind of episode before in seizure patients, especially in older folks, and said he wasn’t particularly surprised by Michael’s lack of response. When I asked him directly if he had seen people be this unresponsive and still wake up days later, he answered kindly, “Oh yes. We’ll give it another day or two and he could definitely come out of this yet. If he doesn’t, I will order another CAT scan for Thursday morning to see if there’s something going on in his brain that the first scan didn’t show.”

I mostly just heard the first part of his answer, and when our conversation was over I put my hands over my face and burst into tears. I was so relieved that Dr. McKee had seen all of this before and that he wasn’t worried yet. I kept sobbing, “Thank you Lord, thank you Jesus! Thank you thank you thank you!”

I really think in hindsight, I was in sort of a fog during the early days following Michael’s hospitalization. Today I asked my daughters to help me remember some details I might not be recalling, and Carolyn reminded me that on Tuesday, February 3rd when she and her family were there, she played the song “If I Were a Rich Man” from the movie soundtrack of Fiddler on the Roof, one of Michael’s longtime favorites. Oh, he loved that movie. We chuckled as we all listened, commenting on how Michael probably thought deep down inside he was Tevye, the bearded, hard-working father of five daughters and the husband of a strong-willed wife, who wanted to please God and also wouldn’t have minded a little extra money in his pouch. *Grin*

Another thing Carolyn reminded me about was that her husband Jeremy, Michael’s son of the heart, his hunting companion, and a skilled and compassionate nurse, tended to Michael so beautifully when he was there visiting that day. Even though Jeremy works at another hospital, he changed Michael, kissed him and cried as he did, expressing his devotion to this man he loved like a second father.

That evening I went home a little earlier since my friend Ginny had texted and told me she was bringing dinner for us. She delivered a delicious feast, and I was struck by what a lavish gift a meal is for a family in crisis. I have taken many a dinner over the years to couples with new babies, people recovering from surgery, those who were grieving, and it always felt so minimal and not as helpful as I wished it could be. Being on the receiving end though, I felt differently. What a help it was to sit down to a delicious meal with our Fosters, who were exclaiming about how good it all tasted…so much so that it made me cry with relief and gratitude.

When I went to bed on Tuesday night, I felt a little niggling worry in my chest. I kept praying and thanking God for all He had done for us, for the ways He poured His love out on us through our family and friends. I truly felt so loved and supported. But I wanted to hurry up and go to sleep so I could wake up the next morning, head right down to St. Luke’s, and hear from the nurses that Michael had shown signs of coming out of his unconscious state during the night.

But that isn’t what happened.

Monday, February 2, 2015

March 14, 2015 | My Jottings

Does anyone ever wake up on a given morning and sense that what will happen on that day will change everything, forever? I would imagine there are some people who have experienced that, but I can’t say I’m one of them.

Oh, I knew the day I walked my teary, twelve year-old self down the center aisle of the First Baptist Church in Covina, California to ask Jesus to come into my life that it would change everything, and it did. I knew the days I gave birth to my three wonderful daughters, my life would never be the same, and of course it hasn’t been. IMG_1628When I married Michael on June 28, 1981 and prepared to move with my two little girls to his home in American Siberia (Duluth, MN) to be with this man who had swept me off my feet before we’d ever met, I knew a new life was beginning, and I was so happy and expectant about the changes the future would bring.

But when I got out of bed while it was still dark on the bitterly cold first Monday in February of 2015, I had no idea what the day would bring. As I always do, I put on my slippers, clicked up the heat, fed the dogs and let them out, turned on a little music and began getting medications and breakfasts ready for our two sweet Foster residents. After seeing them off to their jobs, after getting dressed and throwing in a load of laundry, I was planning to meet my dear friend Su later that morning for a little cup of tea at a newer tea shop in our area called The Snooty Fox. When Su and I got there we learned it wasn’t open on Mondays, so we decided to have lunch at the nearest eatery, The Chester Creek Cafe.

As nice as The Snooty Fox and The Chester Creek Cafe are, I don’t think I’ll ever be able to bring myself to visit them again. Because as I was driving the short distance from one business to the other, my cell phone rang and the charge nurse at the veterans home where my husband Michael had been receiving care for the past 214 days told me that it appeared that Michael had had a seizure. (Later I learned that around 10:30 a.m., Michael had been helping Josh, one of the fantastic recreation staff people there, bake a cake. As he was sitting in his wheelchair, Josh told me later, Michael slowly and slightly arched his back and quietly moaned. “Michael, are you okay?” Josh asked right away, and Michael replied that he was. In less than a minute it happened again, and this time Michael slowly slumped and lost consciousness and was rushed back to his room where the nursing staff began taking his vitals and assessing him.) When I took the call from Tim, the nurse, he said that Michael’s vitals were stable but that he wasn’t very responsive.

Here’s the part that I still can’t fathom, as I look back on this fateful morning. Instead of driving the 60 miles up the north shore of Lake Superior immediately, I went ahead and met Su at the cafe and we had a quick lunch. I told her about the call and of course we were concerned, but I have no idea why I didn’t just drop everything and peel rubber that very moment to go to my husband. Was it because he had had a seizure like this before, a couple of years ago, and came out of it in less than an hour? I don’t know. Did I go ahead and eat my soup because I knew Michael was in good hands and there wasn’t much that could be done anyway? No clue. Was I numb with the news because we’ve been through so much with Michael’s health these past many years, and it just didn’t sink in how grim things could be? I hope so. But the fact of the matter is, I did not feel the sharp stab of worry and the adrenaline rush one would expect with serious news, and so I waited an hour before driving north. All the way there I expected I would see Michael on his bed when I arrived, nursing staff tending to him, and he would greet me with that one-in-a-million smile I love, and after a few hours, he would be back to his level of normal. At least as normal as one can be with advanced Parkinson’s Disease and Lewy Body Dementia.

But that’s not how it happened. When I walked into Michael’s room, the doctor who’d been summoned and the main nurse were there, and they told me he was paralyzed on his right side, and had not been able to answer them, even though one of his eyes was open and obviously seeing. They suspected a stroke. I sat by my beloved husband’s side and leaned down to kiss him, hug him and whisper to him. He could look at me with one eye, and at one point he did try very hard to speak to me, but only a few stuttered consonants came out. I was thrilled he could return my kiss. I was relieved when he could chew and swallow some tiny ice chips and I kept feeding him those. I prayed that God would help Michael and allow His presence to be felt, that He would bring His peace, and I sang quietly to him, held his good hand, and leaned in to kiss him every minute or so, and thanked God with each responsive pucker of his lips.

The doctor told me that there are two kinds of strokes, one caused by a bleed and one caused by a blockage, but either of these, especially with all of Michael’s health/brain factors, could potentially be very serious. She gently said she thought it was appropriate that nothing heroic be done and that we let nature take its course. And indeed, Michael had clearly stated years before that if something catastrophic health-wise should ever happen to him (as if Parkinson’s and Lewy Body Dementia don’t rock one’s world enough), he wanted no heroic measures taken, but wanted to be made comfortable and allowed to exit this earth and move to heaven with Jesus, where his heart had been set on since he was thirty years old. Of course I would honor his wishes, and had no desire to put him through anything grueling like a brain surgery, but the longer I sat there with him, the longer I looked at this beautiful man I have loved for almost 34 years, the more I realized I had to know. Even if what was happening to him was a devastating stroke, I needed to know exactly what we were dealing with. I knew I’d have regrets if I didn’t find out what was going on with Michael.

So I told the nurses and doctor I wanted an ambulance ordered so Michael could be transported to a large Duluth hospital, one hour south of the veterans home in Silver Bay. Everyone graciously and quickly responded to my decision, and many staff people I’d grown to respect and even love began getting Michael ready. Paperwork was printed out for me to take to St. Luke’s Hospital, a hoyer lift was used to place him on the gurney when the ambulance attendants arrived, and a quiet, concerned circle of people made up of staff and other veterans’ wives were there to hug me goodbye and wish us well. Their eyes told me how much they cared for Michael.

29photoI followed the ambulance for the 65 mile drive to the hospital, and by the time I parked and hurried in, there was a flurry of medical personnel tending to Michael in the Emergency Room, they had an IV in him, had taken blood, noted that his blood pressure was uncharacteristically high, and were preparing him for a chest x-ray and a CAT scan. Two of our daughters were there with us, and Michael’s sister Patty and her husband Joe arrived too. By this time Michael’s eyes were closed and he couldn’t seem to open them on command, but he was squeezing our hands hard with his good left hand. His right side was completely paralyzed, although there was no droop in any part of his face that you sometimes hear about with a stroke.

The CAT scan only took about ten minutes, and it wasn’t long before the doctor came in to tell us it was clear. No sign of brain tumor, no evidence of a bleed in the brain, which meant no hemorrhagic stroke, and this was good news, and also puzzling. Then what was going on? The doctor said they were going to admit him to the neurology floor, and that they suspected Michael had experienced a seizure with resulting Todd’s Paralysis. You better be sure I googled that as soon as he left the room. And I was encouraged by what I read. Apparently after someone has a seizure (and why the seizure in the first place? perhaps some abnormal brain activity near an old, mild stroke site), they can be paralyzed on one side and fairly unresponsive for up to 48 hours afterward. This doctor had actually seen this. Oh happy day! I grabbed onto that hope and went with it, praying that Michael would come out of this in the next day or two, and that he had Todd’s Paralysis from the seizure he’d so clearly had that morning while baking a cake with Josh.

Later that night as they were getting Michael all settled in to his private room right across from the nurse’s station on the neurology wing, I waited for Dr. McKee the neurologist to arrive. Michael had consulted with him years before and we trusted him. Dr. McKee was kind enough to come in at 10:00 that night, and after doing many tests he confirmed his agreement with the original ER doctor, that this could be Todd’s Paralysis from the seizure that morning. There were several things that were not presenting, if it were a large stroke, like the facial droop. Michael’s face never had the look of a man who’d had a serious stroke. Dr. McKee explained a lot to me that I won’t put here for the sake of time and space, but when I drove home on Monday night after speaking with him, I was much more hopeful than I had been earlier in the day, and ever so grateful I’d made the decision to have Michael transported to the hospital.

My prayer request became that God would bring Michael out of this Todd’s Paralysis and that he and I would have time together again. And our daughters and friends were joining me in this prayer. Now I, possibly more than any other person in Michael’s life, knew that Parkinson’s and Lewy Body Dementia were nothing wonderful to come back to. I wasn’t asking the Lord to bring him back to what he’d been before so he could go on suffering for the predicted seven horror-filled years an average LBD patient experiences. Selfishly, I wanted to look into those big, expressive, kind eyes again, even if just for a short time. I wanted to feel his super strong hands squeeze mine again. I wanted to smell his neck, which has been the best smelling neck I’ve ever encountered in my 57 years. I wanted to hear his almost-gone voice whisper the things into my ear that he had the day before: “I love you so much… I would marry you all over again in a minute… You are still so beautiful to me… I think about you all the time Julie…”  For my own selfish reasons, I couldn’t bear to even think of never having these times with Michael again.

I guess the quandary was, I didn’t want Michael to suffer anymore, but I didn’t want to be without him either.

Thankfully, yes, oh sooooo thankfully, God is the One who makes those decisions, not me. But I get ahead of myself a bit.

After Dr. McKee and I finished talking, he went out to the nurse’s station to work on Michael’s chart and orders, and I knew it was time for me to go home. I only had three miles to drive. I would have stayed the night in Michael’s room if I didn’t have Fosters who would need me early the next morning, and two little dogs who probably wanted to go out. I left around 11:00 p.m., and I gently laid myself against Michael’s chest as I bent over him. He could still squeeze with his left hand, although not on command. When I kissed him, he kissed me back. We puckered and pecked like that for a good minute, and I told him what a phenomenal man he was and how in the world had God ever tricked him into loving me was beyond my comprehension. 🙂 I prayed aloud softly that Jesus and many powerful angels would stay close with him all night long, that he would feel the peace that passes all understanding, and that he would rest well and not be afraid. I told him I was going home but would be back first thing bright and early the next morning.

I drove home in a fairly numb state, reached up to the visor of the car to hit the garage door opener, and as the door was closing behind me, I shut the car off and sat there a minute in the dark garage, thinking about all that had happened that day.

Because of the clear CAT scan and because Dr. McKee had seen people go through Todd’s Paralysis before and then come out of it, I wasn’t terribly worried. Concerned, yes.

But when I pulled on my plaid nightgown and slid between our soft red and black buffalo plaid flannel sheets, I went to sleep hopeful for what the next day, Tuesday, would bring.

Comfort, comfort…

March 9, 2015 | My Jottings

Early last fall I received a scripture passage from a dear friend named Janet. She kindly reads my blog now and then, and came along side Michael and me in prayer in such a faithful way it made a real difference in our lives.

When I opened one of Janet’s emails in September, the grief I was experiencing over Michael’s care being more than I could adequately handle at home was almost paralyzing. I missed him so much, even though I was able to see him two-three days a week. I missed his wonderful, rich presence even though he was seriously ill. I grieved over how much distress I felt I was causing him, not caring for him at home anymore, and placing him into the hands of others at the veterans home an hour north of us. Even though Michael daily indicated how good the food was, how kind the people, how plentiful and generous the activities, how beautiful the surroundings, how comfortable the bed, we knew home was what he longed for. Only someone who has walked this path fully knows the deep sorrow and despair that relentlessly intrude as your most attentive, unwanted companions.  7photo - Version 2

(This photo was taken on a cruise to Canada and New England in 2003, a year before Michael’s diagnosis of Parkinson’s)

Here is the scripture passage from Isaiah that Janet sent to me that day. I wept when I read it last fall, and I read it again last night from the new perspective of Michael’s recent move to heaven, and cried again. I’m daring to believe that even though Isaiah was writing to another group of people way back then, his words are still for me today, and that the Lord, through Janet, wants me to take in their truth, help and comfort today.

“Fear not, for you will not be ashamed;
be not confounded, for you will not be disgraced;
for you will forget the shame of your youth,
and the reproach of your widowhood you will remember no more.

For your Maker is your husband,
the Lord of hosts is his name;
and the Holy One of Israel is your Redeemer,
the God of the whole earth he is called.

For the Lord has called you
like a wife deserted and grieved in spirit,
like a wife of youth when she is cast off,
says your God.

For a brief moment I deserted you,
but with great compassion I will gather you.
In overflowing anger for a moment
I hid my face from you,
but with everlasting love I will have compassion on you,”
says the Lord, your Redeemer.

“This is like the days of Noah to me:
as I swore that the waters of Noah
should no more go over the earth,
so I have sworn that I will not be angry with you,
and will not rebuke you.

For the mountains may depart
and the hills be removed,
but my steadfast love shall not depart from you,
and my covenant of peace shall not be removed,”
says the Lord, who has compassion on you.

“O afflicted one, storm-tossed and not comforted,
behold, I will set your stones in antimony,
and lay your foundations with sapphires.
I will make your pinnacles of agate,
your gates of carbuncles,
and all your wall of precious stones.

All your children shall be taught by the Lord,
and great shall be the peace of your children.

In righteousness you shall be established;
you shall be far from oppression, for you shall not fear;
and from terror, for it shall not come near you.
If anyone stirs up strife,
it is not from me;
whoever stirs up strife with you
shall fall because of you.

Behold, I have created the smith
who blows the fire of coals
and produces a weapon for its purpose.
I have also created the ravager to destroy;
no weapon that is fashioned against you shall succeed,
and you shall refute every tongue that rises against you in judgment.

This is the heritage of the servants of the Lord
and their vindication from me, declares the Lord.”

Isaiah 54:4-17

*         *         *         *         *         *

There are so many little details in this passage that grabbed my heart; Michael’s love for agates, my birth stone being a sapphire, my desire for all of my children and grandchildren to have God’s deep peace. And the whole shame thing? That thing so many of us are afflicted with since childhood for one reason or another, or for no reason at all, which of course is the work of the enemy of our souls as well….it seems that God wants to strike a death blow to shame too. That’s enough good news and beauty about our heavenly Father to praise Him all day.

Today I am thinking of how God is my husband now, and He’s doing some building with agates and sapphires and other stones Michael would love. And how He’s not angry with me and will protect me and establish me and help me to serve him, even though I feel pretty unable these days.

This is the passage I will be reading again and again as I try to learn to live without my husband on this earthly sod.

Friends, thank you so much for stopping by here. I pray God’s presence, comfort and beauty will invade your week…