Sunday, February 8, 2015

April 30, 2015 | My Jottings

I have heard people speak about the kind of breathing that happens when a loved one is close to death, and the hospice nurse mentioned this to help prepare us also. What was described to me never happened, however Michael’s breathing was becoming so labored it was difficult to watch.

Hour after hour passed on Sunday and our hearts were breaking to see his body under such strain just to breathe. Michael’s body temperature began to rise as well. I never took his temperature, but by Sunday night his skin was burning up and I would not have been surprised had it been 105°-106°. I called the hospice nurse to ask about this, and also mentioned how hard his lungs and body were working to draw each breath. She told me that this all meant that Michael’s central nervous system was shutting down and was to be expected. She encouraged us to give him liquid morphine every 30-60 minutes now, to help ease his breathing. I told her I was hesitant about giving him so much — I didn’t want to give him an overdose. I know that might sound odd to some, but I wanted God to take Michael in His timing, and I didn’t ever want to wonder if I had given him too much. The nurse reassured me that with the dosage we were giving him, we weren’t even close to those levels, and every 30-60 minutes for his comfort was entirely reasonable. I was relieved.

Michael’s wonderful daughters Buffy and Daphne were there all day Sunday, as was his sister Patty and his oldest grandson Jordan. We did what we had done before — gathered quietly around him, tended to his needs and tried to keep him comfortable in every possible way, and told him how much we loved him and what a wonderful man he was. Sometimes a few of us would stay in the bedroom with Michael while the others took a break and went to the kitchen to have soup and bread; then they would come back to be with him while we took a break to eat. Once again I was so grateful to have a fridge full of food so everyone could be easily fed.

dphotoThis picture is of Daphne, Buffy and Patty, basically pouring their love out on Michael. I don’t think I’ve ever met someone with a more devoted sister and daughters. It was a joy and privilege to see.

The weather on Sunday was a little warmer than it had been earlier in the week, but by the time the sun began to set, we had some freezing rain coming down. Buffy, Daphne and Jordan all had several hours of very cautious driving ahead of them, and reluctantly left right after dark. They said their tearful goodbyes to Michael with so many hugs and tender kisses, and even though it was unspoken, we all knew the end was near, and this would be the last time these lovely young women would see their father alive.

Sara spent a long time with her dad, massaging him with essential oils and tending to him so lovingly. She gives just about the best massage I’ve ever had, so I know Michael was feeling her love come through her gentle touch.


Mr. McBoy, Sharon and Chris’s oldest child and my oldest grandson, asked if he could spend the night to help take care of Grandpa. He’s only twelve, but he loved Michael deeply and wasn’t afraid of what he was seeing, so his parents agreed.

That night as we all got into our pajamas and prepared for the hours ahead, I started earnestly praying over and over for the Lord to take Michael soon. We couldn’t abide the thought of being without him, and we couldn’t stand the heartbreak of seeing him breathe so laboriously.

We set our alarms (in case we dropped off to sleep in our exhaustion) so that every hour on the hour, one of us got up to minister to Michael’s needs. I was sleeping 18 inches from him, Sharon was next to me, Sara was camped out on the carpeted floor, and Mr. McBoy was on the couch.

We had all thought that Michael would be taken home sometime on Sunday — it just seemed almost impossible that he could continue for much longer with such harrowing breathing, but as Sunday came to a close, it looked like Monday would be the day.

When I got up to care for Michael, each time I leaned down and kissed him, stroked his face gently and whispered in his ear, “Michael, you’re going to meet Jesus soon…we’re waiting with you, Michael. We will be here with you…it’s okay to go to Heaven now. I’ll be all right…the Lord will take care of me, and you and I will be together again soon. I’m waiting here with you, my dear husband. I love you. I love you. Thank you for being so good to me for thirty-three years. I love you.”

And I would whisper words of praise to the Lord in Michael’s ear. Praising God was like Michael’s second language — he always had a song of praise or words to extol his Savior on his lips. I wanted the last words he would hear on this earth to be words of love from a deeply grateful wife, and words of praise to the One he had loved and served, and was getting ready to meet.

When Sharon got up at midnight to look after her dad, he was still with us. But we knew it wouldn’t be much longer…

Saturday, February 7, 2015

April 24, 2015 | My Jottings

To say, “When we woke up on Saturday morning” would not be the most accurate way to begin this post. I don’t think we actually slept much Friday night after Michael was brought home. Sharon and I were in my king-sized bed and Sara was downstairs in her bedroom for the night, and Carolyn had gone home with baby Miriam the night before and would be returning this morning.

Michael’s breathing had grown more labored during the night and when we weren’t up and turning him, changing him, giving him meds and keeping his mouth moistened, whispering our love to him and trying to reposition him to keep him as comfortable as possible, we were laying in bed in the dark hours, listening to him breathe and feeling the enormity of what was happening.

I was so thankful that Michael wasn’t in pain. A day or two after the diagnosis of ischemic stroke had been given, our son-in-law Jeremy shared something with me that was more evidence of God’s mercies for Michael and us, his family. Jeremy is a nurse, and a couple of the seasoned nurses he works with told him that a massive ischemic stroke is known in the medical profession as “the velvet hammer.” It is said to be one of the most merciful deaths a person can experience, because unconsciousness comes quickly, and the very few people who have recovered from large ischemic strokes have said there was no pain. You close your eyes, and slowly fade away. A merciful death for a merciful man, I have thought countless times since then.

I knew the hospice nurse would be visiting on Saturday morning and I was quite anxious for her to arrive, since I was overwhelmed with how to keep the sheets beneath him smooth and how to do all his cares. It seemed like each time we changed him, the draw sheet would rumple underneath him and I can’t explain how inefficient I felt I was being, and I wanted her to show me how everything was done. The hospital nurse had shown me once, but I was having a hard time remembering all the steps. I wanted with all my heart to make Michael’s last days at home the most comfortable, tender and loving possible, and while I never voiced it, I felt I was already failing him in some way. I had failed him with my inability to keep him home for the entire duration of his Parkinson’s and dementia, now I wondered if I was letting him down again.

The gracious, encouraging, knowledgeable, caring hospice nurse arrived around 9:00 a.m. and what a help she was! Stephanie assessed Michael right away, then took a thorough look around the room, checking our supplies, giving me tips for how to do some things I’d been perplexed about, and telling us how impressed she was with how we were doing. That made me relax a little. She commented on how beautiful and bright the room was, the obvious love and care of Michael’s family, and she said we were doing “above and beyond,” and that she could feel the love and peace in the room, which truly surprised me.

When Stephanie observed Michael as we changed him, she looked straight into my eyes across his bed and said in a low voice that she thought it would be “a day or two.” I later asked her how she could tell, and she said she had seen some momentary grayness in his hands and lips when we turned him to the side. I hadn’t seen that at all, and it made me trust Stephanie’s years of experience, and it made me almost sob. After she pre-measured all of Michael’s oral syringes for us and set them where our makeshift pharmacy was arranged on our bedroom dresser, Stephanie asked to speak privately with me, Sharon, Carolyn and Sara. (Buffy and Daphne had spent the night with Michael’s sister Patty at her house up the north shore and would be arriving a little later.) We sat in the living room for over an hour and she told us what to expect, how to watch for certain things, little tips on how to better care for Michael. She was so quietly encouraging to all of us. She told us that when death finally came, we could keep him at home as long as we wanted, and not to feel any rush to call the funeral home. She told us it’s very common for a family to hold vigil at the deathbed of a loved one for days, and for the person to die when the people leave the room for three minutes to go to the bathroom. I didn’t want that to happen. I wanted to be with Michael when he died. Stephanie also gave us a hospice journal and told us to write down the times we turned Michael and on which side, the times and amounts of medication we gave him, when he was changed, etc. She said all these things would be hard to keep track of unless they were written down, and she was so right. We kept the journal on the dresser and each of us made entries in it as the hours passed.

Stephanie told us that she or another hospice nurse would come back on Monday. When she left I noticed a light sleety rain and a thin film of ice forming on the surfaces outside.

All day Saturday we were blessed with the visits of friends and family. Food and love poured into our house and I can’t even begin to say what a lavish gift this was. If I ever thought that taking a simple meal to a friend in need was just a trifle, I don’t think that now. I didn’t have to make a meal for days, and when 4:00 p.m. would roll around and I’d begin to think, “What shall I fix for dinner?” and then it would hit me that I didn’t have to fix dinner, the tears of gratitude would come. Friends brought pots of savory beef stew, homemade breads and rolls with meat and cheese platters, mouth-watering chicken and wild rice soup, ingredients for breakfast omelets, cookies, turkey and pasta casserole, salads, pies, and more.

Our friends were also so sensitive and respectful and made their visits fairly short. Michael was a well-loved man and people wanted to say good bye to him. I completely understood this, and I was grateful for it too. So while we had a steady stream of visitors, everyone seemed to intuitively know to keep their time in our room fairly brief. I never once felt intruded upon or overwhelmed by the friends and family who came to quietly pray or to just give us their hugs and tears. The older I get the more introverted I feel, but during the last week of Michael’s life I desperately needed the support of my peeps and it was right there.

There might even be people reading this who came to visit, who brought food, who sent cards and money, and to you all once again I say a humble and deeply heartfelt thank you. Such burden bearers. You made such a difference in our lives!

Michael was born in 1949, the first child of an agnostic father and a devoutly Catholic mother. His parents were truly great people. His mama had him baptized as an infant in the Catholic church, but he’d been only halfhearted in any of the normal church things a Catholic child is expected to take part in for his spiritual formation. When Michael was almost sixteen and ready to get his driver’s license, his mother lovingly coerced him to go through confirmation classes in exchange for driving privileges, and he agreed. Unfortunately for his mom, though, Michael never truly embraced Catholicism. Many years later when he dramatically became a Christian at age thirty and had difficulty restraining his zeal, I think his mom was torn. She was glad he had dedicated his life to Jesus, but probably saddened because he did not want to be Catholic. When the CAT scan results revealed that Michael’s stroke was massive and would soon take his life, his only sibling Patty asked me if he could have Last Rites performed by a priest. She knew it would have meant so much to his mom (who died along with his dad in a terrible car accident in 1997), and it would be reassuring to her as well. I happily agreed to this ceremony because I love Michael’s sister Patty so much. I wanted her to be blessed, and if having a priest come to pray at Michael’s bedside would help, I didn’t want to hesitate. It was agreed that we would schedule the priest’s visit for the weekend when Michael was brought home.

So, right around the dinner hour on Saturday evening, Sharon and Chris’s parish priest, Father Graham, arrived. In spite of our bedroom having at least ten people in it, Father Graham remarked right away how noticeable the sense of peace was. He looked at Michael quietly for a while and said, “Oh, he is at peace.” I believed he knew what he was talking about and meant it, since as a priest he had probably attended more death beds than he could remember. He had possibly seen some death beds that weren’t so full of peace. Father Graham asked us all to draw close to Michael, and as we surrounded the bed he anointed Michael’s forehead and wrists with oil, then read a beautiful prayer asking God to have mercy on his servant Michael and to take him home soon. He then invited all the grandchildren present to lay their hands on Grandpa as he prayed, and we all prayed The Lord’s Prayer together. It was a short ceremony and so touching, with the little children there praying for their grandfather. We thanked Father Graham, and I’ll never forget the last thing he confidently said before he left: “This is the grace of a happy death!” We grabbed onto that phrase “the grace of a happy death” and have spoken of it many times since.

And I absolutely believe there can be such a thing as a happy death, even though death is full of sorrow and often pain. To me, a happy death is when a person has trusted Christ for their salvation, and knows where they are going when they stop living on this earth. And a happy death is when that same person is so loved and cherished that his friends and family can’t bear the thought of a day without him, and they shower him with affection, grateful tears, songs and prayers as he is getting ready to leave them. And a happy death (in Michael’s case) was one relatively free of terrible physical suffering. I know not everyone gets to experience that one.

As it was getting close to bed time, my daughters and I sat around Michael’s bed and sang together. We might very well have sung a hundred songs on Saturday and Sunday. We sang songs from their growing up years in church (“The Horse and the Rider,” “The Old Rugged Cross,” “Majesty,” “Jesus, Name Above All Names”) and we pulled up songs and lyrics on our phones to help us sing along with the ones we didn’t fully know. We sang hymns and choruses. One daughter would start, and then when we recognized the song she was singing, the rest of us would join her. We sang God’s faithfulness and love and beauty and mercy out over Michael, into the air around us, and up to God’s throne. We cried as we sang. We laughed at some of the old memories the songs brought. We trusted that even though Michael was completely unresponsive now, he was still hearing us and being blessed. He had been a loud, unashamed and exuberant worshiper since he made the decision to follow Christ, and it seemed so right to worship together as a family around his bed.

I hesitate to speak this next sentence since it sounds self-focused, but by late Saturday night I was exhausted in every possible way. I kept silently praying that God would help us, help Michael, and give us strength and joy as we walked through this agonizing but beautiful part of his life, our lives. So when our son-in-law Jeremy showed up at our house at 11:30 p.m., after he had just worked an eight hour shift as a nurse at the hospital, I was taken aback. He told Sharon, Sara and me that he would be taking care of Michael through the night and that we were to get some sleep. Such costly mercies were being poured out on us! Jeremy set up a chair in the corner of our bedroom by the head of Michael’s bed, kept one small candle going all night, and Sharon, Sara and I tried to sleep. We did sleep off and on, at least better than we had on Friday night.

Every 90 minutes or so, Jeremy quietly tended to Michael’s needs. I heard him gently but expertly turning him, massaging lotion on his skin, giving him his meds. At one point after midnight Michael moaned deeply as Jeremy was turning him, and I heard Jeremy whisper, “There’s that voice I love…I’m here Michael. I’m with you. I love you,” and I could hardly bear it when Jeremy quietly wept as he bent over his father-in-law to care for him, showing his love in the most perfect way possible.

Around 3:00 a.m. I laid awake and listened to Michael’s breath become so labored. I wondered if he would live past Sunday. In the candle-lit dark I said to Sharon, “Are you awake?” and she was. Sara was sleeping, not very deeply I’m sure, on a pallet of blankets on the floor near the bed. Sharon and I laid together for a while and then I felt her take my right hand under the covers, and begin to massage it. Our family members (including my mom and dad) have always loved a good massage and have practically fallen unconscious each time someone rubs our necks or feet or hands. Sharon rubbed my hand and forearm and it was so lovely I almost cried. After a while she reached up to my jaw and slowly found the spots in the muscles that were tight from stress, and she gently massaged my jaw for the longest time too. After over 30 minutes of this gift, she patted my hand and whispered, “I love you Mama.” I’m always searching for words as I attempt to share some of the details of Michael’s journey to heaven, and here again, I can’t find any that really convey what Saturday night was like. As we laid in bed and listened to the beauty of Jeremy caring for Michael as he made his way down his final earthly path, as Sharon so tenderly blessed her exhausted mama with such a practical, loving gesture, I was struck by something, and I spoke of it to Sharon. “Can you feel it, Sharon?” I quietly asked. “Can you feel the kindness hovering over us right now?” She responded that she could, and of course she could, because it was almost palpable. There in the dark it blanketed us, and I said, “It’s the huge kindness of God, hovering over us all right now.”

And I was in awe. We were being covered with a comfort, a loving kindness, the weighty, glorious presence of our Heavenly Father. When our friends Steve and Diane had left to return home the day before, Diane assured me that what was happening in our home was very precious in God’s sight, and that He would be focusing all His attention on us in this room as He was calling Michael home. And since we know God lives outside of time, it is entirely possible for Him to do that with His children. Do you think God is too busy attending to all the needs of this groaning world to listen to your feeble prayers? Not so. He has all the time in the world for each one of us, because He is not constrained by time and place as we are.

I will never forget the wonder of Saturday night, when Jeremy selflessly stayed up all night to care for Michael so Sharon and I could rest. I will never forget God’s love through Sharon, and each of my children during this time. Try as I have here with much verbosity, there just aren’t words.

And Edith and Mildred were experiencing all of this in their own doggy ways. No one will ever convince me that they didn’t perceive that their daddy was getting ready to leave them.

FphotoAll day Saturday, except for the times we let them outside and gave them their meals, Edith and Millie stayed close to Michael.

Edith held her vigil under Michael’s hospital bed. She’s thirteen now and is becoming a little arthritic, so she doesn’t jump up on furniture as easily as she used to.

And Millie, who is still spry and gazelle-like at age nine, jumped up on Michael’s bed many times, carefully sniffing him and discerning what was happening. sphotoShe often curled up as close to her master as possible, with her expressive ears back and down, as if she sensed how little time for such snuggling was left.

Friends, family, food, tears, laughter, singing, worshiping, hope, exhaustion, anticipation, sorrow, unity, comfort, kindness, love, gratitude, vigilance, awe, devotion and peace.

These wondrous gifts and more filled up the last Saturday of Michael’s life. And made us so acutely and thankfully aware of what it’s like when God bestows on His undeserving children the grace of a happy death.

As the sun came up on Sunday morning, we all thought, this might be the day…

Friday, February 6, 2015

April 14, 2015 | My Jottings

Monday through Wednesday I had hoped and prayed that Michael would wake up and come back to me. Thursday’s CAT scan results closed a dark curtain over that hope, and changed my prayers. And early Friday morning I couldn’t believe that I was making breakfast, letting the dogs out, getting dressed, and brushing my teeth, after hearing the news that Michael was very close to leaving this earth and going to heaven. It’s odd to do normal, mundane things after receiving news that makes one feel like life can never, ever be normal again.

I knew from what Dr. McKee had explained that the massive stroke would continue to cause progressive tissue death in Michael’s brain, taking him further and further away from us and ultimately shutting down all the systems of his body. As I drove to the hospital on Friday morning, I knew now not to expect to see improvement, but I sobbed out the most fervent prayer anyway. I cried out to the Lord to give me one final connection with Michael before He took him home. I prayed that God would let Michael respond to me in some personal, obvious way, so that I could know without a doubt that it was real and not just a reflex.

(And may I just insert here that I believe God still heals people today? I believe Jesus is the great physician and I know He can do anything — He can make the blind to see, the deaf to hear and the lame to walk. He can raise the dead! He holds this universe together! My acceptance of Michael’s illness and subsequent journey toward heaven were not because I didn’t believe God could heal him. Over the years I’m pretty certain he was prayed for hundreds of times. He believed God could heal him. We have dear friends who had great faith that Michael would be healed. Our pastor anointed him with oil weekly for many months, and we prayed with faith that Parkinson’s would be healed in the mighty name of Jesus. He even flew with friends once to a healing conference and felt the strong presence of God there. So why wasn’t Michael healed of PD and Lewy Body Dementia? I don’t know. I will trust God with that.

Some would say that God’s will was thwarted and Michael should have walked in the healing that Christ died to give us. I’m not sure how to answer that, except to say that every single person on this earth will die someday, and most of them will die from some kind of illness. God does take His people home, and He often uses an illness or tragedy to do it. When it became apparent that Michael’s health was rapidly failing these last two years, I still prayed out loud for him often. I prayed that Jesus would heal him from the top of his head to the soles of his feet, and Michael would whisper, “Amen, amen” as I prayed and the tears fell. But…I have known about families who have lost loved ones too early, and some of them weren’t able to enjoy the blessedness of a good and peaceful death because they refused to believe that their loved one’s passing could be God’s will. [Psalm 116:15 — “Precious in the sight of the LORD is the death of His saints.”] So I believe in a healing God, and also in a sovereign Father who can be trusted when His answer is no.)

Just like I had for the past three days, I arrived at the hospital so anxious to see my Michael. I had my iPhone in my right hand, ready to take a picture because I knew there weren’t many days left to do that. With each step down the hallway toward his room, my prayer was, “Lord, please let him respond to me, please….one more time…one more time….” When I got to his bedside he seemed to be so deeply unconscious, because his jaw was open so much more than on Thursday. I bent down, rubbed his chest a little and greeted him, “Michael…I’m here. It’s me, Julie. I love you Michael! I love you, love you, love you…”

And will you just take a moment to try to imagine what joy and wonder I felt when my husband roused a bit, slowly moved his head back and forth, and did this:


He smiled.

He couldn’t open his eyes and of course couldn’t speak, but for about twenty seconds Michael moved his head and grinned at me like this, while I kissed his face and tried not to let him hear me sob.

I am still thanking God for this gift. An answered prayer.

I know I’m biased, but I think this is one of the most beautiful pictures I have ever seen.

The rest of the day was filled with dear people coming in and out of Michael’s room, either friends or family who learned the news that Michael would be meeting Jesus soon, or hospital and hospice staff, doing all the things needed to bring Michael home. Two of our dearests, Steve and Diane, drove three hours to come and be with us.

I received many texts and emails on Friday as the news traveled. I honestly treasured them all, but I think the one that touched me the most was an email from my friend Sue P. She wrote:

Hi Julie…..Please excuse my words if they appear clumsy for it is so hard to put into print how the heart aches. Dave and I are in prayer for all of you. My mind keeps going back to Michael as a true worshiper. Soon he will be free of the body encasing his spirit. I had a vivid picture in the early morning hours today of two very large angels on both sides of his bed, sitting at the ready to usher him home. Oh, the glory that awaits him on the other side of the thin veil that separates us from heaven. I love you my dear friend. Take courage today. xxooo Sue

Even now the thought of powerful angelic escorts waiting to take Michael to meet and worship His Savior makes me cry. Oh, the things we cannot yet see!

I met with the hospice nurse in the early afternoon and she had much to explain to me. She gave me instructions and some liquid morphine, liquid Ativan, oral syringes, and a compassionate hug. Since Michael was not exhibiting any discomfort at all I wondered about the morphine. She explained that as he neared death his breathing would most likely become labored and the morphine was to help with that. The Ativan was in case he became restless.

I was a little surprised to learn that hospice would only come to visit two times per week. I think my perception of hospice was that they were more present to do a lot of care taking. Maybe that’s the way it is elsewhere. I didn’t need to worry about that, though, because my family encircled me and for the next couple of momentous days I never had to care for Michael all by myself. My daughters each took time off from their jobs and all but moved in with us…such a blessing I will never forget.

Next, the hospital social worker came in to tell us that he was having difficulty securing a medical transport to bring Michael home. Apparently when the available companies learned we have semi-steep stairs without railings leading up to our front door, they became unwilling to move him. Too much of a risk. The social worker told me that our only remaining option was to call a Gold Cross Ambulance for transport, and he apologetically told me the cost would be $1200. I immediately responded, “Okay!” and knew this significant amount was something I wasn’t to be concerned about. My singular goal was to get Michael home quickly, safely and comfortably, and I suppose if the cost had been $5000 I would have said okay to that too.

The hospice folks had made the speedy arrangements to have a hospital bed delivered to our home, and I was called on my cell phone with the news that it would be delivered within the hour. Sara left the hospital right away to let the delivery people in, and to set things up in our bedroom for Michael. (Have you ever seen our bedroom and how spacious it is? If not, click here and you’ll be able to see.) She texted me a picture of what she had done, and it was beautiful. The hospital bed was placed close to my side of our king-sized bed, and Sara had made it, fluffed pillows, put a pretty comforter on the bed, gathered chairs all around the area, put flowers on a nightstand nearby, and made everything lovely and welcoming. Somehow I knew that even if Michael never opened his eyes to see he was home in his own bedroom, he would know that he was in a room of love, surrounded by people who adored him, and that this would be the sacred place from which he would depart this earth.

Right before the two ambulance attendants arrived at St. Luke’s, one of Michael’s neurology nurses gave me a quick demonstration on how to turn him every two hours and prop pillows up under him to prevent skin breakdown. She showed me how to make sure there was a “draw sheet” under him at all times, completely wrinkle free to protect his skin, and how to keep his mouth moist and his briefs changed. Plus about fifty other things. She reminded me to keep the hospital bed at 45 degrees for his breathing comfort, and I learned later what she meant by that.

The sun was beginning to set and it was finally, finally time. I drove home several minutes before the ambulance arrived. A light snow was falling. I knew the angels my friend Sue had envisioned were guarding Michael and would grace our home while we waited for the end to come.

The two ambulance attendants quickly assessed our home. There are two ways in: up the outside front steps which I mentioned before, and through the garage and into the basement, then up our basement steps which go up one way to a landing, then turn sharply before coming up through a door into our kitchen. They decided to back the ambulance up to the garage and bring Michael in that way, but they told me they were concerned enough to call for assistance.

photoeOur city’s fire department was summoned, and four firemen helped the two ambulance gals carry Michael very slowly up the stairs in a sort of body sling, like a heavy vinyl sleeping bag with handles.

They surely must have been informed that this man they were carrying was coming home to die, because all six of them were extremely quiet, very measured and deliberate in their movements, and so respectful. (I took this photo from our bedroom window when I heard the fire truck arrive, and Sara ran down to move our car out of the driveway.)

photobThey made it up the basement stairs, went slowly through our kitchen, the dining room, down the hall past the office and laundry room, and into our bedroom, where they gently placed my treasure on the waiting hospital bed.

I didn’t know then that a few weeks later the Gold Cross Ambulance bill I received would not be $1200, but only $197. Our wonderful friends Pete and Ginny had been in the hospital room when the social worker originally informed me about the considerable cost, and had decided between the two of them that they would bless us by paying for a huge part of Michael’s transport home. To say I was humbled and stunned when I received their generous check in the mail is an understatement. In the end, a smaller check covered it, but Ginny and Pete’s gift to us is one of the countless memories of God’s loving care through His people I will always carry with me.

Sharon brought her stuff over and informed me she was staying, and I was so thankful. It didn’t take long for us all to learn how challenging it is to care for every physical need of a 185-pound person who is dying. Just to turn Michael every two hours and prop three pillows behind him took a minimum of two people.

By the time we went to bed that night, Michael’s breathing had become loud and labored, and he looked like a man very close to slipping away. We took turns all through the night, turning him, changing him, moistening the inside and outside of his mouth, giving him liquid morphine to ease his breathing, whispering our love to him, and trying to take in all that we were feeling. This was tragic. This was holy. This was impossible. This was inevitable. This was a privilege. This was glorious. This was God’s mercy. This was wondrous.

And this was heartbreaking.

Even our little Schnauzers, Edith and Mildred, acted like they knew something solemn and momentous was happening to their daddy. Both were very subdued and stayed close to Michael’s bed the whole time he was home. Animals know things.

And so, with the unseen angelic guard I believe was in that room, and with the comforting presence of the Holy Spirit nearer than our breath, our vigil began.

Thursday, February 5, 2015

April 6, 2015 | My Jottings

(This is going to be a long post.)

Almost three whole days had passed since Michael had a small seizure and lapsed into unconsciousness, and I wondered what this day, Thursday, would bring. I knew he would be given another CAT scan sometime during the morning, and I was anxious to see what, if anything, would be revealed. The first CAT scan had been clear, why wouldn’t this one be?

When I arrived in Michael’s room in the neurology wing on the fourth floor of the hospital, his sister Patty was already there, and his two oldest daughters Buffy and Daphne, truly stellar young women who have taught me a lot about love, had driven up from their homes and families in southern Minnesota the night before.

Michael had been wheeled to the CAT scan place early and was just being returned to his room when I arrived. His face looked more gaunt than the day before, partially because the only nourishment he was receiving was IV fluids, and also (we later learned) because of what was slowly happening in his brain. His jaw was much more relaxed and the clenching activity in his left hand had settled and eased a bit.

We did what we had done for days now — talked to him, rubbed him, said encouraging things, sat with long periods of silence, put tiny sips of water in his mouth by spoon and watched carefully for him to swallow. Thursday morning I could tell it was taking him a lot longer to swallow even 1/4 a teaspoon of water. He could no longer return my kiss, and he seemed to be more deeply unconscious than before. I asked one of the nurses who came in every hour to care for him if this was considered a coma, and it took a few seconds for her to consider and then answer, “Well, not quite. He’s more stuporous, I’d say.” I looked it up and could see the difference between the two, but I can’t say it was encouraging to hear the term.

As I mentioned in an earlier post, Michael’s neurologist did his rounds at night, so when another physician came in around 11:00 a.m. to tell us he had the results of that morning’s CAT scan, I was relieved we could know then and not have to wait until after dinner time…but I did brace myself.

Dr. Evans quietly said that he did not have good news for us, and that the results of the scan clearly revealed that Michael had had a massive, ischemic stroke, affecting the entire left hemisphere of his brain. So yes, he had experienced a seizure on Monday morning while baking a cake with Josh at the veterans home, but the seizure was because something catastrophic had just happened in his brain, and a seizure with Todd’s Paralysis was not what was going on.

The doctor very soberly told us why this stroke hadn’t shown up on Monday night when the first CAT scan was done after Michael was brought to the ER. Maybe some of you know this already, but for those that don’t, I’m going to share what we learned.

Hemorrhagic strokes are the kind when someone has a bleed in their brain. These kinds of strokes are often very painful, accompanied by what’s sometimes called a “thunderclap headache” due to the sudden, almost unbearable pressure from the bleeding under the skull, and they always show up on a CAT scan.

Ischemic strokes are different — they are caused by a piece of plaque breaking off, usually from the carotid artery in the neck, and this bit of plaque flows in the bloodstream up toward the head and causes a blockage, stopping crucial blood supply to the brain. The result is dramatic, just as we saw in Michael because he could no longer respond to us, and over the next few days, brain tissue slowly dies. An ischemic stroke does not show up on a CAT scan right away because there’s been no hemorrhagic bleed. But after a few days, a CAT scan will reveal an ischemic stroke because the affected brain tissue is now shadowed, looking slightly darker than the healthy brain tissue.

And, mercifully, an ischemic stroke is painless.

After I took a moment to let this all sink in, I asked Dr. Evans if there was any chance at all that Michael could recover from this stroke. He put his head down a little, and shook his head no.

I thanked Dr. Evans for forthrightly answering my questions, he expressed his condolences for the news he’d had to deliver, and he told us that Dr. McKee would be speaking with us that evening, giving us more information about what to expect. When the doctor left the room I took one look at Patty and burst into tears. I sat down in a chair, put my face in my hands, and cried wracking sobs as quietly as I could. Patty cried too.

Barring the most spectacular miracle we could imagine, this was it. Michael was not going to make it.

There’s nothing I can say to describe how that forceful blow to my heart, mind and soul felt. I could reach for a Thesaurus and employ words like despairing and nightmarish, yet they only pale when compared to the realization that I was soon going to have to watch the light of my life go out. I still don’t know any words that adequately convey that kind of almost-paralyzing grief. And yet, I knew in my heart that Parkinson’s Disease and the more recent cruelty of Lewy Body Dementia was nothing Michael would want to return to. In the dark of night I had cried out to God many times to release Michael from the prison his body had become. I believed this was God’s severe mercy for my beloved.

The next thing I did was blow my nose, pick up my cell phone and walk out of Michael’s room, down the hall to a solarium/family waiting room with a view of Lake Superior, and I sat down on a couch and called my daughters, one by one. I don’t remember all the details of what I told them because I think a grey fog of grief had already begun to settle over me, but I let them know what the CAT scan revealed, and that their daddy was going to die soon.

Within twenty minutes our son-in-law Chris was there with us, because of course Sharon had called him, sobbing, the second she and I had gotten off the phone. He immediately took the week off from work and said he would be there with us, and if I needed one thing or a hundred, he would do whatever I asked. Over the next hour, daughters and grandchildren, sons-in-law and friends streamed in, bringing their hugs, tears and prayers. Some of our daughters had asked for prayer for Michael through their Facebook accounts, and now a lot of people knew what had really happened to Michael, and also what was soon to come.

Two old friends, Chuck and Sally, called to ask if they could come and visit, and of course we were so happy when they arrived Thursday evening with a Bible and the strong presence of the Holy Spirit all about them. Michael had been unresponsive all day, and we knew officially why that was now. Chuck stood close to the head of Michael’s bed and greeted him with a firm, loving touch, and said, “Michael, I’m going to read some scripture to you,” as he opened to Psalm 91.

The crowded, yet quiet room listened as Chuck read aloud, “He who dwells in the shelter of the Most High will abide in the shadow of the Almighty. I will say to the Lord, ‘My refuge and my fortress, my God, in whom I trust.'”

Chuck only got this far into the chapter when something exquisitely beautiful and breathtaking took place. Michael, who was completely unresponsive and whose brain was dying minute by minute, lifted his chin, opened his mouth and wailed, tears streaming out of his eyes and down the sides of his face, sob after sob escaping from his mouth. We were all struck by what was happening, and we knew Michael was responding to the scripture he had revered and read, loved and sang, countless times since he decided to follow Christ when he was 30 years old.

After this deep wave of emotion had washed over Michael, Chuck finished reading the Psalm out loud, and Michael continued to demonstrate all that evening that he could hear and understand what was being said all around him. The only way he could respond was with sobbing so plaintive and pure I felt like taking my shoes off or even putting my face straight down on the floor, it felt so sacred. He couldn’t talk, open his eyes, do anything on command, but when he heard the conversation turn to his Savior Jesus, he cried. When the name of a dear friend was mentioned by someone in the back of the room, Michael heard that name and wailed again. Before Chuck and Sally left, Chuck leaned down over Michael and said, “Michael, look how much your family loves you.” And his face contorted and his lips pulled back away from those beautiful teeth and the tears streamed….and even though some would have said it was an “ugly cry,” it was beautiful. Absolutely full of beauty. We were almost speechless from the impact of witnessing something so precious. We were experiencing something we knew we’d never want to forget. We all knew that Michael’s spirit was alive and well even as his body was rapidly failing, and he was responding to the things he knew were most important in all of life: Jesus, God’s Word, and the people he loved.

For several hours, we were given the gift of seeing that beauty come forth intermittently when Michael actually smiled at something funny Sharon said to him, when other family members and friends recalled aloud special memories, and he would gasp and cry, tears streaming.

I wanted to stay as late into the night as possible so I could be with Michael, and be there when Dr. McKee made his rounds, but I finally gave up and went home around 7:00 p.m. Friends had come by to provide a nice dinner to our Fosters, to tend to our dogs, and I had much to do and consider. I must have just missed Dr. McKee at St. Luke’s because he called me at home around 7:30 to tell me he had read the CAT scan and it was even more dire than Dr. Evans had reported. I guess a neurologist sees more in a brain scan than a regular physician, and Dr. McKee all but told me that the damage to Michael’s brain had put him in a near-vegetative state.

I asked the doctor how long someone usually lived with this kind of ischemic stroke, and he answered, “Well, the textbooks say four to five days, and I have seen a few people live up to eight or nine days. But the average is about a week.” I quickly did the math in my head and felt my heart race a bit when I figured that Michael was getting close to the fourth day. I knew I had to bring him home. I told Dr. McKee, and he gently encouraged me to move him to hospice in the hospital, inferring that it would be much easier on me, but I wanted Michael in his own house once more. Dr. McKee said that he would put in the order for hospice home care right away, and he felt hopeful that everything could be arranged for Michael to come home the next day, Friday.

When I went to bed that night, even in my utter exhaustion and sorrow I felt a sense of urgency, and also a strange sense of being untethered, all mixed together. I thought of the passage in 2 Corinthians which I had read to Michael many times in the past year, and knew these words were for us now, more than ever:

6157108771_6b26f94792Therefore we do not despair, but even if our physical body is wearing away, our inner person is being renewed day by day. 

For our momentary, light suffering is producing for us an eternal weight of glory far beyond all comparison because we are not looking at what can be seen but at what cannot be seen. For what can be seen is temporary, but what cannot be seen is eternal.

For we know that if our earthly house, the tent we live in, is dismantled, we have a building from God, a house not built by human hands, that is eternal in the heavens. For in this earthly house we groan, because we desire to put on our heavenly dwelling, if indeed, after we have put on our heavenly house, we will not be found naked. For we groan while we are in this tent, since we are weighed down, because we do not want to be unclothed, but clothed, so that what is mortal may be swallowed up by life.”   2 Corinthians 4:16 – 5:4, New English Translation.

My dear Michael was groaning with the burden of his earthly house. And what was mortal — his hard-working, made-of-flesh-and-blood, precious body, was getting ready to be swallowed up by life. Real, eternal life. Life with Christ.

A white robe. A loud voice with which to praise his God at the top of his lungs again. A new, glorious body that would never again know sickness. True freedom and joy. The magnificence of heaven. The face to face meeting with Jesus, whom he had loved and trusted for thirty-five years.

All this was just days away.

For Michael, I rejoiced. For myself and our family, I prayed that God would help us walk with courage through the door of grief we were approaching, and that we wouldn’t miss one single thing the Lord had planned for us.

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

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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…

Ten Ways to Love — A Repost

February 27, 2015 | My Jottings

I published this post years ago, but I thought I would share it again. Looking through the lens of a widow changes everything, of course, and reading back through these words makes them all the more poignant and profound to me. (I included the kind comments you all left when this was first posted…)

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Here are ten ways to love:

1.   Listen without interrupting. (Proverbs 18)

2.   Speak without accusing. (James 1:19)

3.   Give without sparing. (Proverbs 21:26)

4.   Pray without ceasing. (Colossians 1:9)

5.   Answer without arguing. (Proverbs 17:1)

6.   Share without pretending. (Ephesians 4:15)

7.   Enjoy without complaint. (Philippians 4:15)

8.   Trust without wavering. (1 Corinthians 13:7)

9.   Forgive without punishing. (Colossians 3:13)

10. Promise without forgetting. (Proverbs 13:12)   IMG_1344

Now that I’m a middle-aged woman I can look back on the early years of our marriage and recall so many ways in which I failed to love. And not just in marriage, but in friendship and family too.

I wasn’t terribly bad at #3, #6 and #10. But at times I have been a dismal failure at #1, #4, #5 and #7.

I’m blessed to have many young women in my life — my own daughters and also dear friends through Community Bible Study or church. If there’s one thing I wish I could pass on to younger women (and to young men as well) and have it stick, it’s that in a FLASH the end of your life will be upon you. It may not seem like time is flying now, but you’ve just got to take my word for it, it is.

My deepest regrets have come from my failure to love. How grateful I am that I’m still here and each day’s sunrise brings new opportunities for me to show how much I love my family and friends.

If we don’t love, we will have much sorrow. It’s as simple as that.

Perhaps one of life’s greatest challenges is loving the people who are really difficult to love, especially those who have mistreated us. I find it helps to remember that I have been one of those difficult people to love, probably more times in my life than I’m even aware. Yet God put gracious, loving people in my life who loved me anyway.

My husband Michael knows these ten ways to love. He may not be able to name them, and probably isn’t mindful of how beautifully he lives them out, but he’s the first person I thought of when I read the list above.

On Sunday Michael and I went to church and then picked up lunch on the way home. In the early afternoon we decided to take a nap, and as we laid together we talked of things on our hearts, and prayed for the people we love.

As I snuggled my head close to Michael’s neck I told him quietly, “I am so happy about you.” He blinked, smiled and said, “Really? Me?”  And I nodded my yes.

Then his smile disappeared and he sort of whispered, “I’m not much use to you anymore.” I knew what he was referring to — his Parkinson’s disease, and all the ways it has been “the gift that keeps on taking.”

So I quietly said to Michael as we laid there, “Are you kidding me? You have given me your whole life. You have worked hard for our family, going out into the below zero temperatures to install new siding on houses and to build new buildings. You never complained, not one time. You have been an always-present daddy to our wonderful daughters. You have loved me when I wasn’t that lovable. You have been faithful to me, never touching another. You have Q-tipped my face and rubbed my feet for hours, and still scratch the ridges in my ankles after I take my SmartWool socks off. You have prayed with me when I couldn’t pray by myself. You believed God was at work when I couldn’t see it. You have kept me warm at night for 30 years. You have apologized when it was called for. You have been one of the quickest forgivers I’ve ever known. You have always joined hands with me when it was time to give. You have been a very strong man, because it has taken someone very strong to be husband to a wife like me. You never spoke of leaving. You make me feel loved every single day. You still remember to hug and kiss me every day. You make me laugh. You make me realize that I am one of the few women in the world who has been blessed with a truly good man.”

A few seconds passed after all this, and Michael pulled me close and said, “Thank you.”

And in my heart I looked up and said to my heavenly Father, “No, thank You.”

Sharon’s Eulogy

February 24, 2015 | My Jottings

Our daughter Sharon was one of the people, along with our son-in-law Jeremy, who gave Michael’s eulogy at his funeral on February 13th. I asked if I could share her words on the blog, and she graciously agreed. This is a rough draft that doesn’t have everything she said, but you will get the gist of it, and understand why she had us all laughing and crying. It was perfect.

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10538627_690116977746361_4069783594119036587_nI’m Sharon McMahon. When I was four, my mom Julie married Michael, so that makes me my mom’s oldest and Michael’s middle daughter out of five.

It took me about a week after they married to start calling him Dad, and I’ve never stopped.

I think I am the child who challenged my dad the most. I was one of those kids with a smart aleck comeback for everything, and that could be frustrating to deal with. My dad could say, “Sharon, give the dogs some food,” and I might reply, “Dad, dogs are a relatively recently domesticated species accustomed to hunting in packs and eating large meals only occasionally. So they don’t need me to feed them every morning, because their metabolism only requires that they eat weekly.”

But we’re really all here for a different reason. We’re here because all of you having a burning question you are hoping to get clarity on. You all got up this morning, put on your pants one leg at a time, peered at yourself in the bathroom mirror, and asked yourself, “Am I Michael Balmer?”

So I’ve devised a short test to help you determine the answer.

If you’ve ever emerged from your bedroom in the morning wearing your Jesus T-shirt and your underwear to mix a concoction of powdered wheat grass, vitamin supplements, and Ruby Red Grapefruit juice while singing the Hallelujah Chorus at the top of your lungs, you might be Michael Balmer.

If you did that every morning for 30 years, you have an even better chance of being Michael Balmer.

If you’ve ever woken up at 6:00 on a Saturday morning and thought to yourself, “I’m just going to rip a hole in that wall over there, and then I’m going to hang up this chirping bird clock that will keep you awake 24/7 with eagle screeching, and then I’m going to go to a garage sale and buy a snare drum,” you might be Michael Balmer.

If you’ve ever realized the night before a fishing opener that you don’t have any earthworms for bait, and you don’t want to pay $3 a dozen for worms at Chesney’s when you know darn good and well there are millions of them living in the yard, so you sprayed down your lawn with water an hour before sunset to entice worms to come to the surface, and you send your ten year old daughter out after dark with a flashlight to attempt to catch and imprison them in a Styrofoam container you keep in the refrigerator, you might be Michael Balmer.

If you sang on the worship team on this very stage for years, and you were so enthusiastic during the singing that George in the sound booth had to slowly turn your microphone to the off position so you didn’t damage the speakers, you might be Michael Balmer.

If you’ve been married for more than 30 years and you still lean over to your adult daughter to say, “Your mom? She looks GOOOOD,” or, “Your mom? She looks hot. Spicy hot.” you might be Michael Balmer.

If you’ve ever sat on a couch next to your best friend with a blanket over your head while your wives prepared a song and dance routine complete with karaoke backing tracks and handpainted walleye costumes, you might be Michael Balmer.

If you’ve ever had your life miraculously and inexplicably spared in Vietnam over and over again so you could return home and fulfill God’s plan for your life, you might be Michael Balmer.

If you’ve ever lost both of your parents to the reckless actions of another driver and found yourself face to face with him two weeks later saying, “I forgive you and God loves you,” and you meant it, you might be Michael Balmer.

If you saw the light in other people and acted as if that was the only thing you saw about them, you might be Michael Balmer.

I’ll be honest and say I’m 0/10, and am definitely not Michael Balmer.

Eulogies usually talk about all of the things someone taught you, and my dad did teach me a thing or two: work hard and don’t complain about it. Think positively. A joyful heart is the best medicine. Take pleasure in simple things. Forgive people when they least deserve it.

But I don’t really want to talk about all the lessons I learned from my dad.

I want to talk for a moment not just about my father’s life, but also his death.

My dad had a massive stroke that decimated half of his brain, rendering him unresponsive for three days. The doctors all said this kind of stroke is not painful, and he seemed quite comfortable despite his condition.

It wasn’t his first stroke. And it was complicated by ten years of Parkinson’s disease that was caused by Agent Orange exposure in Vietnam.

On the evening of the third day, some old friends came by to pray for him and to read him Scripture. Chuck said, “I’m going to read some scripture for you, Michael. I want to read you Psalm 91.”

And he began:

“Whoever dwells in the shelter of the Most High
will rest in the shadow of the Almighty.
I will say of the Lord, “He is my refuge and my fortress,
my God, in whom I trust.”

He got about that far into the chapter, and the tiny hospital room full of people watched as my dad began to cry. Not just a few tears leaking out of the sides of his eyes, but what many people would consider a full on ugly cry, face contorted, sobbing.

Except to us, it was beautiful. We knew he could hear us, he understood us, that the essence of who he was was not contained in the left hemisphere of his brain.

For a little more than 24 hours, my dad was able to communicate with his tears, his grunts, his smiles, and his eyes.  He smiled at the sound of my mom’s voice and at one of my jokes. He cried when he heard the names of friends and relatives. He cried when someone said, “Michael, look at how much your family loves you!”

We knew this 24 hours was temporary, and a gift.

He slipped into being unresponsive again, and we decided to honor his wishes and keep him comfortable, but not take heroic measures to save his life. We brought him home.

Our weekend at home with him was one we will never forget. It’s safe to say that none of us have ever been so present in our lives as we were then. We spent it talking to him, singing to him, rubbing him with essential oils, sharing our favorite memories of him, crying, laughing, never leaving his side.

His last day was filled with 10,000 I love you’s. With five daughters caressing his face whispering, “Daddy.” With the snuggles of grandchildren. With the prayers of friends. With my mom holding his hand, saying, “Michael, You’re going to meet Jesus soon. We’re here with you. We’re waiting with you, Michael.”

There was not one thing left unsaid.

My dad stopped breathing, and a moment later, exhaled one last time, as though his spirit left his body. In the dark, I saw my mom look up and wave to her love, now free of the heavy, broken down body that housed his soul for 65 years.

But it’s not goodbye. It’s see you soon.

The author C.S. Lewis wrote this in his book The Last Battle: “All their life in this world and all their adventures in Narnia had only been the cover and the title page: now at last they were beginning Chapter One of the Great Story, which no one on earth has read: which goes on forever: in which every chapter is better than the one before.”

It’s not the closing of the book. It’s the turning of the page.  It’s not goodbye. It’s see you soon.

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