"It's as if a great bird lives inside the stone of our days and since no sculptor can free it, it has to wait for the elements to wear us down, till it is free to fly." Mark Nepo

Monday, April 10, 2017

Rallying



My brother, Mark, turned 61 on April 6. He is the middle child in our family constellation. I am the oldest, only girl, and do not share a father with the three boys who followed. There is a brother between me and Mark, and one younger than Mark.

A year ago, when he turned 60, he flew to Palm Springs alone to celebrate that landmark birthday with his older brother and sister-in-law. A few days after, a group of us, including younger brother and spouses, went to iFly at Southcenter in Tukwila where Mark entered the wind tunnel and flew. He'd been recently diagnosed with Parkinson's Disease. It showed in his stiffness, lack of emotional response to the celebrating, and tremoring in his right hand. But we were hopeful then, his siblings and his friends. Parkinson's is very treatable in many cases. There are medications and surgeries. Stories abounded of people who lived long and satisfying lives after diagnosis.

We rallied: work parties at his house to clean and do yard work; family meetings to discuss next steps; systems put in place to make sure he had the support he needed to live as independently as possible for as long as possible.

Mark continued to fail. Bills went unpaid. His antique business, which he'd poured heart and soul into, languished. He beloved Maltese puppy Max went untrained, so that the carpet Mark had so proudly purchased for his house became soaked with pee. Worse, he grew more and more quiet. He smiled rarely. He seemed to be completely disconnected from any of those new realities. When asked what was going on, he couldn't answer. "I don't know," was his most common response to any questions.

Doctor visits focused on the Parkinson's symptoms. Questions about  Mark's other symptoms went unanswered. Different medications were tried, including antidepressants. Except Mark wasn't depressed. He felt nothing.

In concerned conversations out of his hearing, his siblings acknowledged how much like our mother he was becoming. The mother who spent the last five or so years of her life lost in the swirling mists of dementia. Deeper research into Parkinson's revealed a cognitive component that is rarely discussed, one that might explain Mark's confusions.

By the end of that summer, it was clear to all of us, including Mark, that he could no longer manage day to day living on his own. He turned his affairs over to older brother, who stepped into the role like he was born for it. Mark was moved into an assisted living facility in September. His new place was close to his church and the house he'd just moved from. Max moved with him. The apartment was full of his antiques and pictures of past sibling gatherings that he had been instrumental in orchestrating. For a while he seemed relieved.

I think we all felt relieved then. It seemed that with the stresses of managing his life removed, he was more himself than we'd seen in a while. Visits involved driving him on errands, shopping, movies, lunch. He called from time to time, mostly when he wanted someone to take him on an outing. It was a new normal that, once adjusted to, could be lived with comfortably. A different path than the one we all hoped for him, but still one in which he was still more himself than not.

Then he got sick just before Christmas, a virus that knocked him flat for days. Walt and I planned to pick Mark up at his apartment on Christmas Eve, and take him up to younger brother's for the holiday. Older brother would be in Palm Springs as is his tradition. After several back and forth phone conversations, we decided to continue with our original plans. Mark and I already purchased his gifts for everyone in the family on my last visit before he got sick, and they were wrapped and ready to go. Mark wanted to spend the holiday engaged in traditions that were formed almost a decade previously when he got out of prison. We had rallied then, working to heal old sibling rifts, to help him re-enter society.

Walt and I headed north mid-morning Christmas Eve. I called from Centralia, less than an hour away, to tell him we were close. He promised he'd be ready. When we arrived and knocked on his door, he called in a wavery voice for us to come in. The door was unlocked. I opened it and looked toward his voice to find him sitting on the end of his bed. Stark naked. With a small white washcloth placed in his lap, and a befuddled look on his face. I made a sharp right turn into his living room. Walt following on my heels. He got the unenviable job of going in the bedroom to help Mark get dressed. I stood in the living room listening gratefully to the gentle murmurs of Walt directing Mark to move various body parts while I texted our brothers.

We eventually made it north to younger brother's. The holiday was weirdly happy. Mark smiled more than we'd seen him do in a while. He sang and clapped during the Christmas Eve service, and we all pretended not to notice the strong urine smell. He helped set the table, played Mexican Train, ate like a starving man. He also needed help with everything (toileting, showering, dressing), which younger brother managed with such grace and dignity it felt like a miracle. Again, we allowed ourselves to hope. Once he recovered from this illness, surely he'd return to pre-virus abilities.

He did not. The time between the first of the year, and the birthday we just celebrated held more change and loss than I've been able to absorb, let alone grieve. Additional medical testing revealed fronto-temportal dementia. It explained so much about Mark's lack of emotion, loss of language, inability to problem solve.  While knowledge is often empowering, in this case it broke our hearts.

Our sweet, smart, generous brother - the one who could solve any tech problem, who talked to everyone as though they were the most important person in the world, who stitched our family back together with his humor and stubborn will - would continue to disappear. We had already watched first a father, and then our mother, disappear as their brains slowly died. There was no treatment, no slowing the slide, no hope.

His dog Max went to a new home when someone discovered Mark had been forgetting to feed him. A cane and then a walker accompanied him everywhere. He didn't answer his phone much of the time, and when he did was difficult to understand. He slurred and stammered and froze - indecipherable words, or no words at all. He couldn't figure out how to work his Keurig, or the remote to his television. Always a canny navigator before, he would tell me to turn left when he meant right.

Still, hope clung to life stubbornly. I rallied, increasing my trips north to take him on outings. We went to movies and to lunch and wandered stores for treats. I realized at some point that I was really enjoying our dates, and the person Mark was when we were together. The silences tended to be long, which is not my natural state, but they held no tension so I let them be. When we did talk, glimpses of his old humor revealed themselves like the first lightning bugs on a summer night. I could get him to laugh with outrageous declarations of hyperbole. He even asked about my life once in a while.

On Saint Patrick's Day we sat across from each other at lunch. I commented on his green shirt and asked if he chose green because of the day and because he knew I'd pinch him if he wasn't wearing green. He looked down at his shirt, grinned, and grunted yes. Then he peered at me intently, head to waist, clearly searching for green, and just as clearly hoping for a chance to pinch. He seemed disappointed when I pointed out the green in my earrings. The miracle of that moment shines still.

With every visit came some evidence of continued decline. Once he answered the door in nothing but his Depends and an open shirt. Lunches were material for sitcoms as he would eat forgetting he already had a mouthful so that food would stick out of his mouth or fall to the floor (or on his shirt or back to his plate).  I didn't mind any of it. Not really. I was just grateful for no nakedness, and that he enjoyed our outings. I was determined to get as much time with him as I could manage. The long driving day (5 to 6 hours total, depending on traffic) seemed a small price to pay for these gifts of time.

I knew the day would come when he needed more care than the assisted living place could provide. Eventually he would need to live in a memory care facility. But eventually came much sooner than I was prepared for (or agreed with), less than a week before his birthday. He turned 60 in a home he bought and created with pride and love. He drove. He worked. He used a computer. He was active in his church. He golfed with his best friend Paul.

He turned 61 in a nursing home.

Walt and I drove the 2 1/2 hours north yesterday to see Mark's new home and take him out to celebrate his birthday. The new facility is in Gig Harbor, a 20 minute drive from his apartment. It's clean, the staff friendly and willing to talk. He has a couple of his antique pieces and his pictures of the siblings who love him in such different ways. He also has a roommate who snores, so he's not sleeping. When asked what he misses most about his apartment he said his queen bed. The cot-sized bed he has now leaves little room for his 6 foot frame to spread out on. He says the coffee's not good. It's a lock-down facility, but he discovered in the first days that the code was written above the door. He almost made it to the front door from his wing. The code is no longer there.

When we walked in, he was sitting at a counter finishing his breakfast. I got the first of what would turn out to be a multitude of smiles that day. The second came when I handed him an Easter basket much like our mom gave us as kids. We drove him to his old church for Palm Sunday services. During the years before his illness, Mark's siblings would attend Palm Sunday services to hear him sing in the choir, so this was a continuation of that tradition. Except Mark wouldn't be in the choir this time. Younger brother and his wife met us there. We sat close to the front, Mark on the aisle, me next to him, Walt next to me, then sister-in-law and younger brother.  Mark sang and clapped to all the songs, although the singing was barely audible and the clapping was out of rhythm. He took notes on the handout during the service. And made a beeline for the donuts when the service was done, leaving us still making our way to the aisle. After some discussion, we decided on lunch at a burger place at Tacoma Mall. Mark's best friend joined us, so the table was a happy gathering of people who love Mark. Laughter and conversation bounced around the table, keeping the sadness that's come to live with us permanently pushed to the periphery.

My routine with Mark will change now. Phone conversations require passing through two people and waiting for him to walk from his room to the dining space. When I drive to get him, I need to traverse the Narrows Bridge. I have to close my eyes as a passenger to keep the car from flying over the edge and into Puget Sound far far below. I'm hoping that concentrating on the road in front of me will have the same preventative effect, and that repetition will conquer this fear as I've conquered others in the last few years. Once in his wing, someone will have to let us out the door, which I'm sure I won't be told the combination to. We'll find a new theater to go to, new places to explore for lunch. The drive home after will be longer, with three major pockets of rush hour traffic to navigate instead of the two I had gotten used to.

It's all detail, and while hard to do, easy in comparison with the changes coming far sooner than we ever thought possible. I will step into my fear, I will push through the fatigue, I will make friends with this particular species of grief. As long as I can be a sister to my brother, I will rally.




17 comments:

Terri Tiffany said...

My heart breaks as I read this story about your wonderful brother. I can feel the love you all have for him on the pages and the sadness. We watched the same happen to my father in law but he was so much older. At 62, I find it so scary and sad and heartwrenching that your brother declined so rapidly. Your family is his continued blessing and I'm thankful he has all of you.

Linda Reeder said...

You tell me that your brother is a sweet, loving, wonderful man, and I believe you. What I am sure of it that you are a wonderful sister. This is apparently Siblings Day, and while I have thought of my two brothers and two sisters, I have not given them the love and attention that you are demonstrating so beautifully. I need to consider that.

Dementia is so cruel. I have not dealt with it personally, but my cousins have, dealing with my mother's two sister.

Thank you for this beautiful post.

Starting Over, Accepting Changes - Maybe said...

Watching my father travel that road into dementia was heartbreaking so I know what you and your family are going through. I also pray that it is not my fate. A cure couldn't come soon enough.

Linda Myers said...

My heart is walking with you.

Meryl Baer said...

You are a wonderful sister, and I am sure your brother appreciates you. It is heartbreaking watching a loved one decline into dementia, and he is so young. Thinking of you.

DJan said...

So beautifully written, Deb. Your brother is very lucky to have such a loving family, but especially you and your loving care. I am so sorry that he's suffering through this terrible illness. Thank you for the lovely and poignant portrait of your brother.

Sally Wessely said...

Oh Deb. Your precious brother's story breaks my heart. He is blessed to have you and his brothers. You have blessed beyond measure to all have each other. This is how family should look. Thinking of you with much love and great respect.

Janna Leadbetter said...

Oh Deb, I'm so sorry. Your entry here has me in tears, both because of the struggles you so humbly share, and because of the loving tribute this turns out to be for your brother. My thoughts are with you and your family. May the time ahead give you more of his smiles. <3

Debbie Crawford said...

Beautiful! Your brother is lucky to have such a loving sister.

Midlife Roadtripper said...

Lovely essay on an incredibly difficult and sensitive issue. Your heartbreak is felt by all those who read this. Peace to you as you continue to be so very supportive, despite the pain.

#1Nana said...

I had no idea you were struggling with this. It is a cruel illness. My husbands father died in a care facility. It was so sad when his father no longer knew his name and kept asking who the great grandchildren were. I'm glad you wrote about your brother. It's beautifully written and the love and the struggle shines through the words. Take care.

Sharon Floyd said...

A very poignant piece. Thanks Deb.

tricia said...

This particular piece was so heart wrenching and real and raw. Thank you for writing it; even though I have heard the story verbally, nothing compares to your articulating it in words on paper. I love you and admire your resiliency as you continue to trod through this painful time.

Sandi said...

Oh Deb, my heart is breaking for you. You will be in my thoughts and prayers when you face the bridge for the first time alone this Tuesday. When we take on challenges that we've never been able to take on before, "love" is in the center of it. Sending love to you.

yaya said...

I'm so sorry that your family is dealing with this terrible disease. I'm keeping you in my prayers knowing how many challenges you and your dear brother are facing. I watched my Uncle go through this and my Aunt as she struggled with his care. Love can overcome many things and you certainly have much love to give and good support from your siblings. Hugs Deb.

Dee said...

Dear Deb, when we experience the loss--whether slowly or in a nanosecond--of someone we love, someone who's been part of our lives for more than 60 years--we know, Emily Dickinson says, an "element of blank." Mark is slowly leaving you and all of you--his beloved family--is surrounding him with all the care you can bring to love. The poem of Emily's that most speaks to me as I read your posting--which brings tears to my eyes--is "After Great Pain a Formal Feeling Comes."

I don't know what else to say because I've really never learned how to respond to such pain. Please be gracious to yourself as you accompany Mark on this journey. Peace.

T. Powell Coltrin said...

Grief can come from different sources. I can see that you're grieving the brother he used to be. God bless him and you all. My dad died a few days before my birthday this year. Buried the day before. It was a whirlwind illness and hospital stay. My mother is terribly lost without him.

Take care. This will be difficult, but he deserves all the good care you guys are giving him.

Teresa