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

Advertisements

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

Spaghetti Struggles

“How do I understand him better? Why does he say what he says? Why does he do what he does? Isn’t it common sense? Doesn’t he just know what I need? Why do I have to tell him again? I feel like he doesn’t care.”

Partnerships are complicated. There are no exceptions. Relationships between any two human beings need work, and those that matter the most require a whole lot of hard work. (I dare say that 100% of the time: every day, and all day.) Our family has relied on the two books featured. If you haven’t read them, I highly suggest taking the plunge. They are a quick easy read jam-packed with great practical information.

So what happens when one can’t give 100% and your relationship leans to one side? For whatever reason, the relationship is lopsided. Now what?

These are my favorite verses to fall back on. When I am feeling defeated, alone, and fear is getting the best of me, this is the place where I land:

26 Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered.

28 And we know that all things work together for good to them that love God, to them who are the called according to his purpose.

Romans 8:26,28

This week my husband was faced with a “plate of spaghetti” and I had an opportunity to see how he was able to tackle it in his dementia state of mind. Women think like spaghetti. They have a thousand things whizzing around and multiple plates to juggle at once. It is how we are hardwired. Men, generally do not multitask as well, and like to handle tasks one waffle square at a time. This is definitely true with the men in my life.

In the past- before dementia, my husband would handle a “plate of spaghetti”- multiple dilemma’s all interwoven, by peeling apart one or two parts of the dish at a time. In fact, I remember him coaching our teenage children through each crisis by giving them a list of 2-3 things to do, with a timeline. He would help them by placing the parts and pieces of the spaghetti dish into waffle squares to be tackled one at a time. He was good at it, and the kids would gravitate toward our calm problem solver.

I, on the other hand, am a practical problem solver and a BIG PICTURE girl. The kids didn’t need my help to see the forest just yet. They just needed to see one tree at a time, and he was their go-to person. In fact, I have often made things worse if I interfere too early.

We have been a team. We compliment each other very much. He has traditionally seen the trees and could get them out of the forest. Then he would tag out and I could help them to process and plan next steps.

So, back to the spaghetti. My brain goes a mile a minute. In fact, on this Saturday, I was awakened at an early hour with a headache, a sore jaw, and thoughts flying through my brain at warped speed.

My husband’s brain does not. This week he sat and stared at his figurative plate of spaghetti, and could not pull out just one part at a time and work through our multilayered challenges. He didn’t even know where to start. The only solution that he could think of wasn’t a possibility. He just sat and cried. He knew I needed him, but he couldn’t help.

So what happens when the relationship is lopsided, despite all the best intentions, and your better half can’t speak your love language?  In Matthew, Jesus says that church members should forgive each other “seventy times seven times” (18:22), a number that symbolizes boundlessness. I take this as a directive for healthy humans. But what if one isn’t? What if he just can’t reciprocate the way I need him to? Now what?

37 Jesus said unto him, Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind.

Matthew 22:37

Whoever does not love does not know God, because God is love.

1 John 4:8

I think the answer is to love and to take what he can give because something is better than nothing. So, to all of you who don’t have an equal partnership, and a plate of spaghetti is just too much to maneuver through, my advice is to take what you can get and accept what he can give. Put on your game face, be the best YOU you can be, and take the blessings, because life is hard and unpredictable. Don’t waste one precious moment thinking about what you don’t have or how your needs aren’t being 100% met. Instead, focus on what you do have. Count your blessings, name them one by one. I do believe that we will be rewarded in the end.

28 And we know that all things work together for good to them that love God, to them who are the called according to his purpose.

Romans 8:28

43280680_10216000478678845_5066786525547593728_n

 

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

 

 

 

 

 

 

Love Anyway

Whether the question is about marriage, child rearing, difficulties at work, or a health challenge, our charge is the same: LOVE ANYWAY.

My father always said that “whatever didn’t kill us, would make us stronger.” Honestly, there have been times when I thought I’d die before my Maker would prop me up, blow extra air in my lungs, place a steel rod in my spine, and walk me through the affliction.

13237642_10208657040337476_2939891770525134645_n

This week marks our 31st wedding anniversary, and when I look back over the years, we had some really high hurdles, and steep mountains to climb.

What’s the secret to our success?

Be spiritually united. My husband didn’t start attending church with me regularly until the children became involved in AWANA. That was 1998 and eleven years after we had said, “I do.” It was at that time that we became committed to a common spiritual foundation and rule book to refer to while raising our children, but more importantly, how to preserve our marriage when the going got tough.

Over the 31 years, there have been dark times that we could have walked away from one another, and quite frankly, we didn’t like each other very much. We’ve had lean times when we prayed for bread, lost jobs, and sat by the bedside of family members that we loved very much. We had rebellious teenagers, and have desperately missed children and grandchildren who have moved far from home.

Through it all we stayed together. We did the right thing even when it wasn’t the easiest thing. We worked with professionals and created a support system. We never stopped trying. Some days we made progress. Some days we took three steps back.

God used the dark times to strengthen us for what was to come. We needed to have those support systems in place for when the heat was turned up even more. We are now beginning the seventh year since the worst year of our marriage, and the year before the dreaded diagnosis.

A promise is a promise. We made vows that were taken seriously no matter what and because we remained faithful, we have been blessed. Today’s devotion contained a reminder to LOVE ANYWAY. “As God’s chosen people… (we are called to) clothe ourselves with compassion, kindness, humility, gentleness, and patience…and over all the virtues put on love…” Colossians 3:12 & 14.

This year I have learned that it is more important to keep a strong testimony than to be right, and my goal has been to accept what happens because “God works all things for good to those who love Him and are called according to his purpose.” Romans 8:28

In a strange way, the past five years have been a blessing for our family. Although we face losing the Patriarch of our family, we have savored life beyond what we would have done without the diagnosis. My goal is to live each day, one at a time, with my palms up. I have given up the urge for order, organization, and a schedule. Instead, I have given EVERYTHING to my Maker: my husband, children, home, and job because I know that when things aren’t right with the Lord, nothing is right.

So to my children, grandchildren, family, and friends, the secret behind 31 years of marriage is to LOVE ANYWAY. Be a joy seeker. Count your blessings. And when things go sour, as they sometimes will, thank God because he works all things for good to the faithful.

“There will be a day with no more tears, no more pain, and no more fears. There will be a day when the burdens of this place will be no more, we’ll see Jesus face to face. Until that day, we’ll hold on” (Jeremy Camp) forgiving each other the way God forgives us. Every.Single.Time.