Barry’s Journey – Finally free of FTD

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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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MY JOURNEY – September 2016

Should I sit by his bed until he dies?

Today I got a call from the care center where Barry lies in bed day after day. The nurse only calls when something is wrong. I am up north staying at the little cabin that I am renting for two months this summer. I was just home for a week and Barry seemed to be stable, so I headed north once again to write. The call came as I headed into town to get a donut, another delaying tactic as I try to write. My heart stopped when I saw who the caller was. I let it go into voicemail because I really didn’t want to hear the news from a live person. So this would be the day Barry has died, I thought to myself. A beautiful late summer day with me so far away from him.

I stopped and listened to the message as tourists, mostly couples, holding hands on a romantic getaway walked around me. I looked out at the lake and listened to the nurse tell me that Barry had fallen but was not hurt in any way. He went on to say that Barry had actually gotten out of bed and tried to walk into the hallway. He grabbed the door handle, falling slowly down on his back while the door slammed shut. The sound startled the nurses who ran to his room. Barry was lying on the floor, looking confused but unhurt in any way.
The nurse said that everyone was surprised that Barry found a way to get out of bed. I was shocked that Barry, weighing just 111 pounds, had found the strength to walk on his own. He is all bones and lose skin with little effective muscle after two years in a bed. In the end, the nurse said all was fine and if I needed to talk more about it, he would be in all day.

I stood on this beautiful morning feeling sad and so confused. Was Barry looking for me? Does he wonder if I have left him for good? Does he wonder if I do not care anymore? Should I go home? Should I sit by his bed until he dies? There is no guidebook for this journey. No rules. No one to tell me what to do.

After buying a donut, I continued to avoid writing and instead hiked up to the top of a cliff overlooking Lake Superior. I decided for now, on this day anyway,that I would stay right here –no matter how hard it is to be away.

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MY JOURNEY – August 2016

Being Happy

I can’t get over some of the twists and turns that have occurred along this journey with my husband Barry and his FTD. I am no longer surprised when “serendipity” suddenly appears out of the blue. I remember a few weeks ago when Barry’s nurse told me that I should not stop feeding him because he is not quite finished here on earth. The nurse added that I also am not done learning from Barry and this journey. His words were powerful and I have continued to have Barry fed, when he can swallow.

That nurse was right, I am not done learning.

Late this spring, my niece Sally asked if I would speak to a class at Southview Junior High School where she helps out each week. It is a special education program with the great name of ASPIRE. When the teacher asked if I would give a talk, I explained that I charge for speaking engagements. I still feel guilty even after all these years about charging schools for a talk; but it is how I make a living.

The teacher emailed back, saying that they did not have any money for a speaker. So that was that. But a few days later she emailed to say a parent had stepped forward to pay for me to come. I felt pretty guilty again, but a few weeks later I went to speak at the school. It was a fun morning. There was lots of excitement as I taught the students how to draw my characters. A couple of the guys really, really liked drawing and kept telling me so! I loved it because the kids were so happy and enthusiastic. I also was really proud to see Sally maturing into such a caring young woman. A few days later, school was out for summer vacation and I was on to other things, like visiting Barry at his care center each day.
As I visited the care center on a lovely summer day, I felt crabby and irritated as I walked by two young men waiting outside the care center front door. As I passed, I heard one say, “That looks just like Nancy Carlson.” I turned around and said, “I am Nancy Carlson!” I then noticed the teacher and that one of the boys was wearing a Southview Junior High shirt. I remembered them both from that class visit. Sam especially liked drawing and when I was done speaking to his class, he said, “I am going to be an author and illustrator just like you Nancy Carlson!”

Turns out that Sam and Ryan worked during the summer at the care center each morning. They might do a craft, read the sports page to a resident or help with simple exercises. They also do a little cleaning. Wow. Serendipity showed up again. Both boys were so happy to help each day at the care center and their joy made me feel better about being there as well. So now I seek out the boys and take time to visit with them when I visit Barry. Each day they are thrilled with just about everything. They don’t see the place as sad and depressing. They love their work and feel proud. The feeling of pride is a good thing for all of us to experience.

I still don’t love the place, but I am kind of proud that I am surviving this journey. Sam and Ryan’s happy spirits rub off on me each time I see them and I feel better about being there. I guess Barry’s nurse was right when he said that I still have more to learn. Thank you Sam and Ryan for teaching me the lesson of finding some joy in each day!

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