One More

April 18, 2013 and April 1, 1016 are significant days that my family will always remember. Like marks chiseled on a door frame, they will be forever engraved in our minds. They will make us swallow, stifle a tear or two, but mostly make us stop and praise the Lord that we were given a precious gift of a few more years with our most special man.

First, he was diagnosed with (FTD) Frontotemporal Dementia, which is caused by progressive nerve cell loss in the brain’s frontal lobes (the areas behind your forehead) or its temporal lobes (the regions behind your ears), most likely caused (or sped up) by 4 significant blows to the head. Three years later he survived a stroke, which left him wheelchair bound for 10 months.

I don’t think we are alone in measuring time by landmarks: when we were married, had our children, grandchildren, moved, changed jobs… But never, did we celebrate them like we do now.

One more.

We were told at the time of the diagnosis that my favorite man had (on average) 6-8 years to live from the time of onset. On April 18, my husband will have reached his 6 year anniversary.

Honestly, we feel like he is doing well. There are seven stages of FTD and I would guess that he falls in the fifth stage. On average, a dementia patient remains in this stage for about 4 years. As long as we keep his world small and predictable, he continues to be highly functional and needs minimal assistance. At this stage, my husband is quite easy to manage and remains fairly content.

What this means is that we don’t look too far into the future for anything and we celebrate nearly everything. It makes me think: What if everyone looked at life as “one more”? What if we slowed down and stopped looking toward the next —- and just celebrated today- the wonderful, beautiful today?

Today we took our first walk of the season to the ocean, and had one more ice cream. We sat on the warm rocks and watched one more tide roll in, and listened to one more windstorm.

Perhaps we all need a mindset change. Instead of “sitting through one more dreaded meeting”, we looked at the time as one more opportunity to gather with colleagues? Instead of “one more work week”, we looked at the blessing of a job that fulfills us?

Everybody has a hard job, and everyone goes through hard times. But what if… What if we took the time to be thankful and joy-filled because God has graced us and blessed us with “one more”?

One more day to say “I love you.”

One more day to hold his hand on a walk.

One more day to close my eyes and feel the warmth on my body while listening to the waves slap against the rocks, smelling the salty air.

There will come a day when I will miss watching the 2016 election, putting down the toilet seat, and running into furniture that has been moved yet again. There will be a day when I will plead and beg for just one more day.

56446489_10217274462447643_1286714808233623552_n

 

 

Advertisements

Win! Win!

I went to Wal-Mart yesterday and I only lost my husband once. I consider that a win, win! It isn’t uncommon for any of us to misplace our loved ones on occasion. However, in our case, we are preparing to hit the 6-year anniversary of one of my husband’s worst days of his life: the day that he lost his job of 17 years. It is also when we began to realize that something was very wrong.

Honestly, it has become a blessing. I believe that removing that stress has added both quality and quantity to his life and as a result, our marriage has never been sweeter. Yes, he has dementia. Yes, we know what that means. However, it isn’t all gloom and doom. In fact, it is mostly fine.

My husband is the same old goofball he’s always been. This week I found oven mitts in the frig. This Fall, he had somehow managed to get the entire coffee maker in there. I eventually found out the reason for the coffee pot: to keep the ants out. (Naturally!) I am convinced that there is some equally good reason for the placement of the oven mitts. We just don’t know what it is yet. Perhaps it is to have nice cold mitts to take hot items from the stove and this is the beginning of a new trend!

He still likes to go on short trips to meet up with familiar people. Yesterday we ran errands on the way to have lunch with friends- hence the “quick stop” to Wal-Mart. We went in for 3 items: shoe goo, coffee creamer, and toothpaste. We came out with $115 worth of things we “needed”. (My man just loves to shop!) During check-out he needed to use the restroom and didn’t return. The cashier patiently allowed me to scoop up my favorite guy, who was standing outside the bathroom, looking all around. He wasn’t upset. When I asked him if he was lost, he said, “I was waiting. I knew you’d find me.” I reassured him that he did exactly as we have taught the kids to do, and he nodded his head, proud that he had done the right thing.

Once leaving the store, he became concerned about all the cars in the lot: “Our car is lost.” I always make it a point to talk about where our car is and landmarks surrounding it, when we park. Yesterday, I had announced that we were nose toward the Home Depot flag. He followed my directions as I instructed him where to go, even though he didn’t quite believe me, and he was relieved to find the car.

It made me wonder, how much does that happen during a typical day? How often is he “standing outside the restroom” or “searching for the car” until his brain catches up or until one of us gently finds him and brings him back, or guides him to where he needs to be?

We have had to remind him on several separate occasions that he has just had his 53rd birthday. He keeps forgetting and sometimes doesn’t believe us. One minute he’s in a fog. The next, he is perfectly clear. Yesterday he told our friends, “I don’t know why people say that you are another year older. You are only one day older than the day before. What’s the big deal?” (He’s right you know.)

He’s a nerd. He has always been a joker. My brother said the other day, “I can’t tell if he is legitimately confused, or playing with me.” He’s right. When my brother wished him happy birthday, my favorite man seriously said, “It’s my birthday?” When he told my husband his age, he replied, “That can’t be. That’s old.” 51973075_10218188709851508_3315212005115166720_n.jpg

When I ask him if he feels 53, he tells me that he feels older. He says that he hurts, is tired all the time, and that he hates his gray hair. Some days this is particularly obvious and he can barely function all morning long. He just sits in a daze with his hand over his eyes. He can’t hold a conversation, or even feed himself. But after a nap, nine times out of ten, he’s back to his old self and pontificating about current events. Mornings are often rough- slow to get going, and evenings are generally when he is the most clear. He matches the weather. If it’s a foggy day- so is he. He doesn’t seem to be experiencing “Sun Downing”, which is common of those who have been diagnosed with Alzheimer’s. (A fog when the sun goes down.) In fact, he prefers the evening (with the lights on) and sleeps better when the sun is out. When I ask him about that, he says that he “doesn’t like the dark”.

What’s really strange is that he knows ABOUT many people. He can often hold a two-way conversation about friends, family, and community members. Yet, he has no idea who they are when he sees them. The kids and I prep him before gatherings, but it’s a crap shoot. Sometimes he’s fine. Sometimes he’s a hot mess. Sometimes he’s fine for a bit, and ends a hot mess. Generally, we can take him places where we are pretty sure he isn’t going to know anyone and he is fine- like the ocean, the grocery store, or Home Depot. Failure tends to come when we take him to places where he feels like he should know people or people might know him.

This even happens at home. After Christmas we had a small gathering of friends from church come to the house. He cooked, cleaned, and talked about many of the people who were going to be attending. However, as soon as the first guest entered the house, he began to stutter, stare, and shake, so my daughter shuffled him off to watch a movie in the bedroom. He was much happier with the baby, some snacks, and REMEMBER THE TITANS on the TV.

It’s weird. He misses people, but he wants to be alone. He wants to go places, but he wants to stay home. So, if we can get him out into public and only lose him once, I call that a WIN, WIN!

52958278_10217022152180044_656897148931014656_n.jpg

Just be kind.

As Christmas approaches, the general pubic is trying desperately to determine what their loved ones need. We search and search for just the right thing and it brings us great joy when we feel like we have found what will bring a smile to the faces of those that we love so deeply.

My husband has been fretting. He wishes he could get me a “surprise”, not something that I picked out for myself. He feels badly that he can no longer do that for me. He doesn’t get it though. It’s not what is important to me.

What is important to me is the basics. What I want more than anything is genuine kindness, trust, and compassion. Our children are missing this in the public education setting because our focus is so grossly focused on standards and testing results. Many don’t possess the basic fundamental skills that don’t have anything to do with academia. It has to do with basic human characteristics that focus on basic human interactions: love, kindness, trust and faithfulness.

I want that. I want that for and from everyone I come in contact with. I just want to genuinely care for the people I come in contact with and for them to reciprocate my feelings.

So what do I want for Christmas? I just want people to be kind.

images-2

Figuratively Speaking

Your mind is a garden, your thoughts are the seeds. You can grow flowers or you can grow weeds. I am determined to grow flowers.

We’ve had a really great summer and Fall, a nice long stable stretch. As long as we keep my favorite man’s world predictable, quiet, and with enough projects to keep him busy, he remains happy as a pig in poop.

44284050_10216065718829808_8116275771711946752_nCoffee and candy make him as happy as a kid in a candy store and walks by the ocean keep him happy as a clam at high tide. It takes very little to make his day.

Nap time is most important for him, wrapped like a bug in a rug, he will saw logs for about three hours a day. This gives him enough of a second wind, to stay up until well past my bedtime. He seems to enjoy the quiet time. He thinks it’s the best thing since sliced bread.

He continues to enjoy rewatching the last election from a variety of different networks and is thrilled with the surprise outcome every time. He also follows the local sports teams. He is still quite opinionated, so I say squat when he wants to fill me in about what he watches. Sometimes it takes a month of Sunday’s to get his point across, but if I remain cool as a cucumber when he is wound tighter than a three-day clock, he is happier than a pup with two tails. I remind myself to give eye contact, shut my mouth, nod my head, wait, and listen. That’s all he needs.

imagesMy problem is that I am generally busier than a one-armed paper hanger. I feel like I complete everything by the skin of my teeth and that nothing I do is done up to par. However, I’m learning the value of putting away technology and correcting, giving him my time. Nobody ever lays on their deathbed wishing they spent more time working. My undivided attention makes him happier than a butcher’s dog.

As we prepare for the third snow of the season, we are once again enjoying the pellet stove. Not only does it provide warmth, but it gives him something else to be responsible for. Everyone needs a job, and everyone needs to feel needed. It’s a good thing that he continues to be strong as an ox, and his rotator cuff is allowing him to carry the 40 pound pellets with ease. He really minds the cold, and so the stove is the cat’s meow.

We aren’t quite done winterizing. He still needs to put in the window inserts, the plastic, and the orange stakes out for our neighbors who plow for us. However, he is proud as a peacock that he is still able to do so much to care for our home. God knew that my favorite guy would need plenty of projects.

He can still write, although his handwriting isn’t what it once was and his speech, most of the time, is as plain as day. Sometimes he mixes up words or has a hard time getting his point across, but if we let him “warm up” he will generally make connections.

He putters and is often slower than molasses going uphill, but it makes no difference. There is no fire. Sometimes it is a day or two – and he needs to watch and rewatch YouTube to help him with a project snag, but soon the answer is as plain as day and the snaffoo is working slick as poop through a tin horn.

This year he decided that he didn’t want a vegetable garden or chickens. He has been determined to simplify, which started last summer when our goal was to go through everything we own and thin out. It was a challenge, but he tackled it like a champ, and was happier than a pig in a slop trough when he was able to make more room in the garage.

If he’s having “one of those days” and is meaner than a wet hen, we just remember that there is more than one way to skin a cat. If coffee, candy, and a nap doesn’t do it, we employ the toddler technique. Although our 22 month old granddaughter can run around like a tornado in a trailer park, she can take him from looking like something the cat dragged in, with a personality of a damp dishrag, to a a kid on Christmas morning. Nobody can melt his soul, like his grandbabies.

When the house lacks order and looks like a pig sty, I’m on it like white on rice. We will often clean and straighten together- especially on laundry day, since he has trouble separating the clothes.

If it’s too stimulating, we make like a banana and split, and head off like a herd of turtles to his get-a-way. His mood is never anything that a trip to the coast won’t cure, with a walk and to watch the boats . This makes him as happy as a fox in the hen-house and when he’s happy, I’m happy.

Although poor as church mice because nobody has found that blasted money tree yet, we know that we sow what we reap. Therefore, we want to be transparent, teaching others how to push through life’s challenges. We are not greater than thou. We are just normal humans going through challenges just like everyone else. Instead of feeling sorry for ourselves, we try to meditate on life as a coffee cup, filled to the brim and enjoyed with friends. My husbands favorite reminder to others is that everybody has a story, we only need to listen and observe.

We miss people. Our world has become very small, but we’ve learned that life is like an elevator on its way up, sometimes we have to stop and let some people off. Instead of dwelling on who isn’t around, we are thankful for those that want to be part of our journey, and show us with their actions and prayers.

Life isn’t all peaches and cream. So, as long as we have air to breath, we will remind our family that, “They (you) are our (my) sunshine”, and when they ask if life’s challenges are over; We’ve hit our max; It’s someone else’s turn, we will tell them to dream on Alice, soon they’ll be in Wonderland.

More than anything we just keep reminding ourselves that love is like the wind, you can’t see it, but you can feel it and when life hands you lemons, make lemonade.

43280680_10216000478678845_5066786525547593728_n.jpg

 

Happy National Coffee Day!

42727692_432819013790021_7068949409626587136_n

“Buy one, get one free” brought a smile to my favorite man’s face and a put a twinkle in his eye today. This has brought me joy beyond all measure.

Today has been a foggy day. He has them once in a while. Coffee, a walk, leaf peeping, and a trip to the grocery store made my favorite man’s day. He is now peacefully napping and I hope that he is dreaming of LOVE. I pray that he feels the warm feeling of a family that insists on focusing on what he can do today, what he can remember in the moment, and that his heart and our hearts will forever be entwined.

Coffee is one thing that keeps him with us and makes all the difference. So from our family to yours, Happy National Coffee Day! May it be as good for you as it has been for us.

 

The Dementia World

I haven’t written about the world of Dementia for a while for a variety of reasons. One, is simply because there has been little to write about. Things have stayed rather stagnant for a while. Another, is because my children don’t like to read about it. It is our reality, but they try not have it be the focus of our existence, and I can appreciate that.

That being said, I share our story for two major purposes: to inform and to educate. I feel strongly that my responsibility is to be transparent in order to keep friends, family, coworkers, and neighbors updated so that they don’t have to ask. There are also followers who either have lived, are living, or will live through dementia in some capacity. The disease doesn’t show favoritism and you never know when it will come knocking at the door of a friend or family member.

A third reason, and the most important one for me, is for therapy. I process by communicating. When life’s circumstances bog me down, writing forces me to organize my thoughts. Strange as it might seem, it works as a sort of detox for my brain.

Today I wish to inform or educate, and at the very least, detox. So, here goes…

Five and a half years ago, I was angry. That was when my 47-year old husband was diagnosed with Frontotemporal Dementia, most likely caused by too many blows to the head. But if it were possible to go back and console my younger self, these are some things that I might say:

Dear Younger Me,

I know that you are running around like an idiot trying to get those 25 things that the support group gave you, completed. They are right, you need to do them and many things are time sensitive. However, you need to know more than anything, that you will have plenty of time to regroup and reset. Time is on your side.

Medical challenges will erupt, and every person’s dementia story sounds different. However, there will be many similarities. Listen and learn from those who have gone before you. I know that makes you angry. You want to know the timetable. You want to know what to expect and when to brace for another pothole, but there is no way to plan. Everyone’s journey is unique. Stop planning.

View his time home as a sweet blessing and his lost job as a gift from above. Call it “Early Retirement” and learn to graciously accept gifts from friends and family. Do not deny them of the blessings that come from being a helpmate to a friend, family, coworker, or neighbor. Choke back your pride. There will be a day when finances will adjust to a “new normal” but it will take time and patience. You will not always live on bread and peanut butter.

Notice the blessings. God knew that your favorite man would need more projects than he could keep up with, That is why he supplied the house on the mountain three years in advance. He also knew that you would need help from well-trained children, who are natural caregivers. He supplied a home that was too big for two, and just right for six, and filled a need for two families. Enjoy the gift of family that provides help and grandchildren that fill you up.

Believe it or not, your relationship will become sweeter than it has ever been. You will feel needed and appreciated because he relies on you so thoroughly. Walks are precious. That is the time that he will open up to you and talk to you about changes that he notices and fears that he has about the future. It is a blessed time to reassure him and provide him with comfort. It is a beautiful gift of time that the Lord has provided.

He knew you needed a small support system that you could call on at any time, knowing that they would be there to hold you up when you won’t have the strength on your own. Don’t dwell on who isn’t there when you feel lonely. Instead, feel thankful for those who have stepped in to help and encourage you.

610546228-612x612The dementia progression will go in steps like a staircase. He will be on one stair for quite some time, before moving to the next landing. It gives you time to recalculate and regroup. Relax. You will catch up.

Some days will be cloudy and some days will be clear. Most days are just fine. He won’t be able to differentiate between a cloudy and clear day, so you will have to do it for him. He will be tired, confused, frustrated because he can’t do something he knows he should know how to do, or angry because he “did something stupid”. Just reassure him, and keep things light. You are his person and if he sees you upset, he won’t know what to do about it and his agitation will increase. Save it for the closet or the shower.

He will be quieter. Be prepared to do projects and errands alone. You will have to keep him safe, take over the driving, manage the finances, and monitor the medications. However, the good news is that he will still be an active participant in the family. He will still cook, mow the lawn, do laundry (after someone else separates it), clean, and make minor renovations 5 1/2 years after the diagnosis. Regression isn’t immediate, so relax. Just watch from afar to be sure that he stays safe.

He will be tired, have a headache nearly every day, and will be sore from a torn rotator cuff and an arthritis filled body. He will lose his desire to eat most meals. However, he will be drawn to sweets. Foods will taste bland to him, so they won’t be as enjoyable. He will be thrilled with Dunkin Donut’s coffee, soda, and sweet treats like ice cream, candy, and cookies. It will make you so happy to see him content.

You will have to worry about highly stimulating situations. He will no longer want to go to church, or crowded places, especially where people might know him, and he doesn’t know them. Even familiar places like the family farm will be a scary place. He will be happiest at home, riding in the car, or down by the water. The ocean brings him peace. He will love to watch the boats and the tide slapping on the rocks.

After 5 1/2 years, he will still be able to read, and retain what he reads if it is highly interesting. He will still be interested in politics, history, and the most recent election. It will bring him great joy to re-watch the surprise ending! He will enjoy watching Big Brother, Survivor, and 48 hours with your middle child via FaceTime and Messenger every Saturday night.

His children and grandchildren will continue to bring him the most joy. Although highly stimulating when all together, there will be nothing that makes him happier. Plan to have him respond much the way an autistic child would when he’s had enough. He will shake his hands, stare, shiver, rock, yell out, or bolt. Occasionally he might surprise you and rise to the occasion, and crash later. Most importantly, he will be looking for you. You are his person. Be there. Hold his hand, whisper in his ear, let him rub your arm raw, and take him for a walk. He needs you and it will make you feel so good to be his lifeline.

More than anything, live for the day. Stop planning. Don’t plan anything for more than 4-6 weeks out. Think back to when the children were little. Make tentative plans based on how he is doing at that moment on that particular day. Dementia makes no sense. Some days are good. Some days are not so good. Some things are forgotten forever. Some things come back after a period of time.

Celebrate each day as a gift. Stop worrying about the future. When it’s time, God will reveal what the next steps are. It sounds trite, but you really have to just live in the moment. Most importantly, stop holding your breath. Don’t waste one precious moment. You don’t want any regrets in the end.

Don’t doubt yourself. Your journey is your journey. It isn’t going to look like everyone else’s. You and the kids are going to be alright. He has taught you everything you need to know to keep going. When the time comes, and the Lord takes him home, be assured that you will one day be reunited. A physical death is not the end of your story. So relax. Enjoy the moment, seek joy, find strength and peace. You will be okay.

With love,

Older, Wiser Me.

40143700_10215708702704628_3343368981779054592_n

 

 

 

 

 

 

MYOB

As a child my mother would constantly remind us to MYOB (Mind Your Own Business). To be honest, it was often HER fault that I was, and continue to feel, in charge of everyone. As a young child, I had to watch over my siblings and our house pets. When we moved to the farm, I was in charge of animals- lots of them. We had huge responsibilities in the barn, at school, and at home. Then I married, had children of my own, tended to a classroom, gained in-laws, and grandchildren. Now, my aging parents and sick husband pull and tug at my heartstrings. It has always been my business to mind everyone else’s, and it has become my natural tendency to worry and to protect.

One of my coping mechanisms is to be a long-range planner. I look at the forest and then the trees. I am a big picture kind of gal, and some find that rather irritating- namely my husband. From the beginning, he would spontaneously decide to do something and go at things willy-nilly. Sometimes it worked out well, sometimes not so much.

Wisdom comes with age and many failures, and I am not lacking on those. However, I am trying to use my new-found knowledge to impart on the next generation without overstepping- a hard thing to do.

This summer, I have done two studies: Women Who Made A Difference, by Martha Tyler and How’s Your Attitude? by Juanita Purcell and it “shocks me” how the studies have aligned to much of what I needed to hear and to the summer services at church. So, I thought I’d share a few of my “Ah Ha’s”.

My mother, a very wise woman, always says that if I concentrate on doing the right thing, I don’t have to worry about doing the wrong thing. So, how do I know what is right?

My lessons have encouraged me to realize that I need to:

  • cling to my faith and to be desperate for a relationship with the Almighty.
  • sympathize with and comfort those that I love.
  • have power under control and to absorb adversity and criticism without lashing back.
  • seek God’s word so that I can have permanent joy that is not affected by life’s up’s and downs.
  • show mercy to those that hurt us and forgive them even if they don’t ask.
  • keep my mind pure and my heart uncontaminated.
  • be quick to listen, and slow to speak or get angry.

You may recognize these as the beatitudes: a list of Godly attitudes that lead to true happiness and right behavior. I have a choice every day regarding the attitude that I am going to embrace for the day. In order to stay sane, I need to focus on what I can do and stop worrying about what I have no control over. I can’t always control my circumstances, but I can control how I respond to them.

I think I can make a difference, just like some of the women that I have read about this summer. It has become clear that my job is to demonstrate a spirit of humility so that my heart attitude is right. What I do and what I say matters every minute of every day becasuse people are watching me.

As I re-read the stories about Shadrach, Meshach, and Abednego, as well as Daniel, I have been reminded that with God all things are possible. If I am truly putting my trust in Him, I can be fearless.

So today, I will MYOB and let God be God.

11f1cf2a53c00456db174496c3b2ab65