OUR JOURNEY -The final journey.

February 14, 2017

It’s Valentine’s Day and Barry’s ashes just arrived at my apartment. I donated his body to the University of Minnesota Medical School’s Anatomy Bequest Program. A little persistence on my part helped him get accepted into the program. A couple of years ago, I called to see if I could donate his body but they were not taking anyone who could not make the choice on their own and sign the donation forms. When I called the U of M, Barry’s FTD was too far advanced for him to make the decision on his own. So I forgot about it for a year. Then one, warm summer day I decided to try again. I remember wondering to myself how it could be so beautiful outside yet here I was making this sad call to donate my sick husband’s body. The woman at the U of M repeated that they were not taking any second party bodies at this time. But then she paused and asked what he had that made him unable to sign the paperwork. When I told her Barry suffered from FTD, she told me to please hang on for a moment. Very quickly she got back to me saying they would take him after all. I filled out the paperwork and sent it off before they could change their minds. In the meantime, Barry continued the long, slow work of dying.

I didn’t know what to expect once he died after the people from the U of M picked him up at the care center. I was surprised they were done with him so quickly. I was hoping their work would take months and months, maybe even years, but it took just two months and I was reminded again of what this poor man went through. During his time at the U of M, I tried hard to not think about him lying on a table with students studying him inside and out. I hoped with all my heart that Barry would have been fine with this, but I will never know for sure.

Now he is with me in my apartment, a place he never lived in or even saw. I feel bad that he missed so much because of FTD. But now he is here, sitting on my newly cleared table that had been cluttered with paperwork and unwritten thank you notes from his funeral. It is the same table that each Valentine’s Day held a beautiful bouquet of flowers from Barry. This year Barry takes up the empty space where the flowers once sat. I am organized now and ready to begin Barry’s final journeys. I feel happy I can do this for him and am certain he would be pleased at my choices.

First I need to get a big box to decorate and keep some of his ashes here. I will also need a couple of smaller boxes to hold some ashes that I will take to scatter in special places. Our first stop will be at my favorite trail up near Grand Marias. It’s the one where I found that special lion’s mane mushroom stuck to a blown down tree. I want to feel Barry’s presence there each time I go looking for mushrooms. His sickness led me there so it seems right that he should be there each time I hike that trail.

Next stop? To southern California and his favorite spot overlooking the Pacific Ocean where we spent many family vacations.

I couldn’t stop his FTD suffering, but I, damn it, am going to help him rest in peace.

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Barry died on November 21, 2016

It has been almost two months since Barry died. During this time, I have found myself very busy trying to avoid the fact that he is gone. First there was a Thanksgiving dinner to host, a quick trip up north, a funeral to plan, a Christmas tree to put up and decorate, kids flying in, speeches to write and many dinners out. Then there was Barry’s memorial service, my youngest son’s birthday, Christmas morning with Swedish pancakes, kids flying out, babysitting and finally a quick trip back up north. And now I am home in an empty apartment with pine needles still
littering the floor and dead plants lingering around from Barry’s service.

I am a master at avoiding thoughts about anything uncomfortable. I could get a PhD in avoidance. One feeling I avoid is sadness. Am I sad about Barry being gone or am I sad for me? Who am I now that I am no longer Barry’s wife? Who am I now that I am not the long- suffering spouse of a very sick man? Do I really want to know the answer to these questions? I had been working on thank you notes and noticed what I wrote on quite a few: “I will miss Barry but I am thrilled he is finally free.” I was surprised and embarrassed that I wrote the word “thrilled” instead of relieved or thankful. For a moment, I wondered why I wrote that, but quickly avoided thinking any more about it. See how that works?

Since Barry died, I have been feeling at loose ends. I was in a panic right after his death, rushing to start planning my new life. To figure out my next move. Where will I go? What will I do? Should I take a trip? Should I move up north? I felt I should figure it all out immediately. I was up north now and decided to postpone writing any more thank you notes and planning my new life in favor of a long snowshoe outing. I chose one of my favorite trails, the same one I was on when I heard Prince had died. That day was sloppy and warm. I really had to concentrate so I wouldn’t slip in the mud and the snow that was still in shady spots along the trail. That whole hike I thought about Prince. Why can I think about Prince’s death but not about my own husband’s death?

But on this snowshoe trek, Barry pushed his way into my thoughts. I started to imagine what he would have thought about this trail, and it made me feel sad and lonely. It was then I realized that I was avoiding thinking about him because the thoughts made me feel sad and lonely. Idon’t want to feel sad, and I really do’t like to feel lonely. But I also concluded that is unfair to Barry to push him out of my mind. He deserves to be remembered. As I hiked and thought about him, it dawned on me that I was no longer remembering him as sick. The skinny, dying Barry overcome with FTD was beginning to fade from my memory. The old handsome Barry was emerging and that felt really good. Why would I avoid thinking about him when my memories are now about him healthy and whole? I also realized on the hike that I could not plan my entire future right now. I had to take a deep breath and slow down. When I finished the trail and returned to the house where I was staying, I wrote a note to myself that said: “Take it slow, remember, reflect and make no rash decisions. And, damn it, get back to work!”

After a few days up north, I decided it was time to visit the Care Center where Barry had lived for so long and give them a donation from Barry’s memorial fund. I had been avoiding the place for two months. As I drove up, I felt sad that Barry had been there for so long. Yet I felt an odd sense of excitement to see everyone. Did I actually miss coming here? Rather than avoiding that thought, I had to admit that I did miss it.

When I walked in, the same people were by the front desk in their wheelchairs. I greeted the same lady who had always asked who I was visiting. But this time she did not ask me. I went to Barry’s floor and was greeted with hugs from the staff. Someone else had moved into his room. I wanted to look in, but the door was closed and that meant the person in there was dying, too. I walked down the hall to see who was still around and discovered that almost everyone was still there.
Barry’s nurse, the one full of wisdom, gave me a hug and said, “Go now and live your life. You did all you could. You were a good wife.” Then he added, “Look at your children because Barry lives in them.” I am glad I didn’t avoid going to the Care Center because I needed to hear those wise words. I also needed to admit to myself that the place had been a huge part of my life and it will take time to not feel the loss of visiting there each day.

I will take the nurse’s advice and live my life one day at a time. I will let myself remember Barry. And I will feel happy when I look at my kids and see Barry shining through in them. When I got home I felt that the huge weight of avoidance had lifted. Am I thrilled that Barry is finally free of FTD? Yes! And now that the old Barry is back in my memory, I feel closer to him than ever.

Thank you to everyone for your support during this journey.
Peace for the New Year!

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Barry’s Journey – Finally free of FTD

god speed

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Our Journey – November 2016

Through the fog of life and death

The first trip Barry and I took with our new baby girl Kelly was to Door County, Wis. It took us two days to get there, stopping to feed and diaper this new love in our lives. We also stayed in a hotel half way there. We were such novice parents with poor Kelly. I remember sitting at a fish boil in Door County with her in the high chair and Barry and I staring in awe at her every movement.

We discussed every feeding and diaper change. We somehow survived that first year and so did Kelly. Thankfully we had each other to fumble through this new chapter in our lives, parenthood.

I was back in Door County this week to teach a class and spend some days writing. But just a few hours after arriving, Barry’s care center called to tell me to get back because Barry took a turn for the worse. I decided to spend the night because it was too late to drive back. I packed up at 4 a.m. and drove home in a late autumn fog so thick I could not see the exit signs. I could hardly see the lights of the cars ahead of me. I drove slowly, praying a deer wouldn’t jump out onto the road and thinking about Barry who may be dying right now. Would I get home in time? The fact that was so foggy was the perfect metaphor for our lives. Barry was trying to find his way home and, of course, so was I. Will he find his way today? Tomorrow? Next week?
We found our way as new parents so we had two more children. And we will find our way through this new phase of life and death. Barry will find his way, of that I am certain. I, too, will find my way through this thick fog of grief even though I know there will be times I am so lost that I won’t know which way is up. But sometimes being lost can be a good thing. You may end up somewhere awesome that you least suspected.

The fog finally lifted with just an hour left of my drive. I went right to see Barry who is certainly dying but holding on for now. Together, just like in parenting, we will figure out this dying thing. Although it’s just not as fun as having a new baby.

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My Story

Last week I went for a boat ride. It was a sunny day and I saw someone in the distance standing on a dock waving at me. I couldn’t quite see who it was because the sun was reflecting off the water.

The lake was calm as I drove the boat slowly up to the dock. I was just learning how to drive this boat so I turned off the motor and drifted in. The wake from the motor rocked me slowly sideways toward the dock. As I floated in closer, I realized that the standing figure was my husband Barry. Did he want to go for a ride around the lake? I started to feel panicky because Barry is so ill and weak. I wondered how I could possibly manage to get him in the boat safely. I tried to reach out for the dock but missed it. So Barry knelt down and grabbed the boat. He pulled me in. I asked myself if this was really Barry or someone else. For a moment I couldn’t tell.

But when the sun briefly went behind a cloud, I could see that it really was Barry after all. I was surprised that he was healthy again. I shouted up from the boat, “Barry, you are no longer sick!” I felt so happy and relieved! But he said nothing and simply climbed in with no help from me. Then he sat down quietly in the bow. Barry lifted his hand to shade his eyes from the bright sunshine reflected off the lake. He continued to look toward the horizon as I started the motor and steered the boat out into the lake. I was vaguely aware that this Barry was much younger than I am, in fact, a lot younger.

But I wasn’t bothered in the least. I was stunned to see how handsome he looked. I thought to myself that I have my husband back and he is healthy again. As we drove across the lake, I was excited thinking about how much fun we would have now. He will grill burgers, we will hike, ski and make love again. I thought to myself that at last everything is okay — but then,  I woke up.


I have had this same dream a lot lately. I don’t exactly know what it means, but I know I feel at peace when I wake up after having it. I always remember every detail in the dream. I wish I could dream it every night because it makes me feel like I am falling in love with Barry all over again. I also know because of this dream that he will be whole again when he finally does die.

Despite everything that has happened, I still love him very much.

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Barry’s Journey -October 2016

Now 104 pounds

A few days ago I drove home from Grand Marais. It was past 8 p.m. when I rolled into town. I had this feeling that I should go see Barry so I drove to his care center. I grabbed a bottle of wine out of my car that had one serving of wine left in it. Once again I thought he was dead when I walked in. He was in his hospital gown, and it was pulled way up so you could see the diaper he wears. He now weighs just 104 pounds and the diaper is so big that it could be wrapped around him twice.
His eyes were open. I looked at his chest as I always do now and I didn’t think it was moving. I thought to myself: this is the day Barry has gone to heaven. But as he always does when I pull up the chair to sit, he woke up very startled to see me. I pulled his gown down, unable to look at those skinny legs starting to kick again. I sat down, poured myself that small glass of wine, held his hand and tried hard to imagine what we might be doing if Barry didn’t have this horrible FTD.

I could not think about anything else except being stuck in this place and wanting to head back up north as fast I could. It is easier to imagine what could have been, what should have been when I am not at the care center. Barry fell back to sleep. I finished the wine and drove back to my apartment to unpack, wait and try to imagine what might have been — or what will be.

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Our Journey

Thank heaven for little girls

Last week I babysat my granddaughters while their dad was in England and their mom busy with her school conferences. My goal as a parent was to always keep my kids busy so they would take long naps and I could get some work done. I can’t sit still and like to stay busy, so it just works out.

On this day of babysitting, my goal to keep my granddaughters busy. We began the day at YoYo Donuts because grandma badly needed a donut. The girls knew immediately what donut they wanted. One had a pumpkin donut and the other a yellow one! Each ate half of their donut and were soon running circles around the donut shop. When Charlotte started to jog in place shaking her arms and head, I knew it was time to go the park.

We drove to Lone Lake, one of my favorite parks, just a block or two from the donut shop. I used to bring Barry there when he was first diagnosed with FTD. We had a few picnics at the park because I wanted to get him out of the house. But Barry was not happy to be away from his TV and waffles back then. I soon gave up trying to get him out.

The girls were wild and couldn’t wait to explore the park, slides and swings. We hiked and looked for fish in the lake. We even found some cool mushrooms. I tried to sit on a bench and watch the girls run and climb but they yelled, “Grandma catch me, Grandma push me on the swing.” As I crawled slowly through a tiny tunnel on my 63-year- old knees, I thought how lucky I am.

When the girls started to tire, it was time to go see Grandpa Barry. Charlotte asked, “Are we seeing the Grandpa in the bed?” Wow that made me feel sad. That is all they know about this Grandpa. Part of me doesn’t want to bring them there. I want to protect them from it all. I don’t want them to see their Grandpa lying in a bed with diapers on. But that is not fair to Barry. I have no idea what he thinks when he sees these two beautiful little girls but if he gets any joy from them at all, it is worth bringing them.
The girls got their second wind when we arrived at Barry’s room. They ran down the hall to play the piano. They wanted a cup of water from the dispenser, multiple cups. When they got tired of that, they ran down the hall until they came face-to- face with a very old woman who had full and wide grey hair and one eye. She wanted to hold them and said in a very loud voice with her arms stretched out, “Come here! Come here!” Suddenly I had two, quiet little girls who wanted to be held. We went back to Barry’s room and I had them sit quietly in two chairs while I gave Barry some water. They watched quietly until Charlotte got up and walked over to rub Barry’s arm. She did it a couple of times. That was huge connection for a four-year- old to make. I saw Barry looking closely at her. I hope he felt a little love from her and, most of all, that he knows he is not alone and is loved.

We soon had to leave because Lilly was tired and both girls were hungry. After lunch, I put them to bed. They both slept a long time and so did I.

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October 2016 – Flu Shot?

fluGot a call from Barry’s care center about his yearly flu shot. Last year they guilted me into letting him have the shot. This year I am standing my ground. I said no to the vaccine. Barry never leaves his bed so who can he infect? Every day is a constant test of my will as I try hard to guide Barry along as FTD takes over his entire body. I really hate thinking about all this but I have to because it is my job as his wife.

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Barry’s Journey

September 2016

Resuming my daily care center visits with Barry is harder than I thought it would be. I live in a state of denial while I am up north. I think about Barry all the time while I’m away, but then I head off on a hike and lose myself for a few hours looking for neat stuff growing out of the forest floor. But when I return and look into the face of FTD every day, I have a hard time doing anything productive after sitting with Barry for an hour or two. I feel so bad for him and at the same time lonely for the north woods.

Barry now weighs 109 pounds but still moves a lot in his bed. He holds his feet a few inches up and kicks them back and forth. I try to hold his hand, but after a bit, he reaches for something near his head and I don’t understand what he is trying to do. He looks like a very sick old man. One day his entire floor of patients seemed a bit off. One guy down the hall was swearing loudly and an old lady was asking for help and her mother. (Poor thing.) I blame it on the full moon.

I received a message from Barry’s hospice nurse a few days ago telling me she noticed that Barry stops breathing while asleep. She figures maybe he always had sleep apnea; and she is right. For years and years Barry snored loudly and would gasp for air countless times during the night. I complained and begged and pleaded for him to have a sleep test done but he stubbornly refused to admit he had a problem. So I continued to kick and nudge him all night long and listen for that snort that meant he was breathing again. I did that until I moved into an empty bedroom in our house when FTD was starting to take over his frontal lobe. He is too far gone now for me to say, “See, I told you so!” Dang it.

I went to his room the other day and he was asleep so I quietly watched him for a long time. His mouth had that sucked-in look of no teeth, although he has teeth. It is just that he is so thin. I watched as his chest stopped moving, then a few seconds later he gasped for air. Then again no breathing and a gasp. As I sat there, I thought maybe today is the day he will stop gasping for air and that beautiful full moon will guide him up to heaven.
But then as Barry stopped breathing once again, the swearing guy down the hall shouted “Fuck You” really loud. Barry gasped for air and was startled awake. He looked over at me and then started kicking his legs and moving his arms — as a guy with FTD does.

It was then that I decided to look into having him moved into a quieter area of the care center so someone shouting doesn’t wake him up the next time he stops breathing.

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MY JOURNEY, Mid-September 2016

Determination, GPS and a few mushrooms

I am writing this up in the little cabin that I have rented for two months in Grand Marais, Minn., a wonderful little town on Lake Superior not too far from the Canadian border. There are mushrooms drying on a table in the afternoon sunlight and my muddy hiking boots are sitting by the door just waiting for the next hike.

How did I get here? Four years ago I was struggling to get through the day. My entire world and the life I thought I would be living was over because of my husband’s FTD. Those of you that follow my blog have read about my increasing interest in mushrooms this past summer. But this new passion actually started a year ago last September when I discovered a lobster mushroom. I guess it was also about that time that I stopped looking back on all I had lost and started looking forward to what my life might look like someday.

Now a year later I am a new person, a new Nancy that I am still getting get to know. I took a mushroom identification class in August. For five hours I sat spellbound, learning about some species of mushrooms that would be coming in late summer and autumn. I was armed with new knowledge and ready to get back up north to hike. It’s really weird because I am not usually a person filled with the need to learn new things. I used to be pretty happy to just spend my days drawing, using my imagination and wandering around the woods without a plan. But I am different person now and I hike with a plan. I choose a route in the forest that has certain trees where I might find the mushroom I am looking for.

In the mushroom class, I told one of the instructors about my becoming hooked last summer on trying to find the lobster mushroom. He told me the lobster is the gateway drug that gets people hooked on mushroom hunting. That’s mushroom hunters’ humor. Funny thing is that the more I have learned about the lobster mushroom, the more I realize that perhaps I am so interested in them because they remind of the FTD in my husband Barry’s brain. A lobster mushroom is a fungus that takes over other mushrooms, even ones that are not edible, and turns them into prized edible specimens. As I learned about it, I kept thinking of Barry’s brain being taken over and totally changed. The old Barry is gone and in his place is a new Barry with FTD surrounding his frontal lobe. It is just like a little white mushroom in the forest being taken over by lobster fungus that turns it brilliant orange in color, making it hard to miss as you hike in the woods.

This summer while Barry lies waiting to die but not succeeding yet, I wander the woods and make new friends. A man I met up north who also took the mushroom class came by my place with a new GPS device for me. It was a gift from him and his wife so I would stop getting lost in the woods. What nice people I am meeting this summer. The GPS device helps me find my way in the woods and trusting the new Nancy helps me find my way through this new chapter of my life.

During the class, we learned about the lion’s mane or pompom mushroom. It usually grows high in trees that are rotted or decayed. I listened carefully as the instructor told us that this mushroom has medical uses for dementia and Alzheimer’s disease. Too late for Barry, I thought, but not for me. I left the class and headed up north, determined to find this species.

I hiked for a few days, then by chance on a beautiful trail stopped to catch my breath and looked up. There, attached to an old rotted birch tree, were at least five bunches of the lion’s mane. I could not believe it. I shouted “YES” out loud, but I was alone except for a few crows hanging around. I found a long stick, but even by jumping up I could not reach the lowest bunch. I tried
and tried with no luck so I hiked out, hoping I could find a friend with a ladder willing to hike in. That night I lay in bed thinking about that lion’s mane and planning to hike again the next morning to see how long it takes to get to the dead tree and whether it would be possible to hike there with a ladder.
In the morning, I hiked about 45 minutes to the dead tree and realized it was too far to hike carrying a ladder. Then I discovered there was no need for a ladder when I spied a rotted tree blown down by a light wind laying on the side of the trail with most of the lion’s mane still attached. Some of the mushroom was scattered right in the middle of the trail and I was able togather a huge bag full. “What luck,” I said out loud to those crows still hanging around. It was lucky that I found the downed tree, but the success depended on my determination and taking the time to hike back there and check it out. I feel the new person I am becoming is more confident and, best of all, hopeful as I head into this new chapter of my life. Later I shared the lion’s mane mushroom as a pizza topping with some friends. It was delicious.

Today I will head out hiking again. I won’t get lost. I know what I am looking for in the forest and, best of all, I am learning that this new Nancy is going to make it after all.

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