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.

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Comments

  1. Shari C. says:

    Such heart wrenching times, Julie…watching our love ones suffer…hugs to you my sweet friend…

  2. Sue Raimo says:

    Reading your account of the beginning of the end of Michael’s time on earth is bittersweet and rich with love. Thank you for finding the energy to share it as you walk through valley of the shadow of death. Much love dear Julie.

  3. Ganeida says:

    My father also died after a stroke ~ 10 agonizing days of hoping for the best, knowing that each passing day with no improvement meant the worst. Like Michael he tried to express all his love for his family through hand squeezes but I am grateful God gave us time to say good~bye. All our children chose to visit ~ & while none of them found it easy [Cait was still quite young] all of them are glad they were allowed the opportunity. There is a great mystery in death. That too He redeemed on the cross. God bless you, Julie, & grant you the peace that passes understanding.

  4. Just Julie says:

    Dearest Shari, Sue and Ganeida…. “thank you” never seems enough to respond to kind comments and stories. Somehow I have to trust that you all sense how much is behind my “thank yous”….. hugs to you all. xoxo

  5. Helen in Switzerland says:

    Oh Julie my heart goes out to you at the moment, but if I am honest I think it was probably a blessing that you didn’t know what that fateful day would bring. You were able to behave in a measured way, not panicking and as always were able to show Michael the deep love you felt for him. I am completely sure that he felt cherished right to the end. What could be better for him? Much love – my thoughts and prayers are with you, Helen xx

  6. Janet Skoglund says:

    Julie, I believe the Lord gave you a calmness of reassurance in the present moment because you have learned to cast all your cares upon Him. I have experienced the same at times of sudden things happening around those that I love. A call in the night that our 3 month old grandson died of SIDS, my brother hit by a car. Our son in harms way in a war zone. Quietness and confidence becomes our strength as we walk through these present moments because we are needed at times to be an anchor in the midst of a storm. Jesus has never left us and he walks daily with us through these time and increases our faith to continue walking. You and Michael were a gift to each other I am so privileged to have known you both. Holding you in prayer as you continue to walk and touch many lives.

  7. Ember says:

    <3 Thinking of you, honey xx

  8. Just Julie says:

    Helen, Janet and Ember…thank you for such care and kind words. It means so much to me. Hugs to a all three of you dears. oxox

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