LET’S GET BACK TO FISHING!

A number of years ago, our District adopted the Fish! Philosophy: a technique to make happy individuals alert and active in the workplace. We were inspired by a documentary from a fish market in Seattle, Washington. This market included entertainment from employees throwing fish – sort of like the Harlem Globe Trotters with fish! The positive energy was electric. The fishmongers seemed to relish their work throwing themselves into it with energy, passion and enthusiasm. They made us laugh out loud!

The philosophy included 4 fundamental ideals:

Be There

This is all about being emotionally present for people and being in the moment – not always easy in such a busy reactive world with so many distractions. By being there we demonstrate respect as well as improving communication and strengthening relationships.

Play

Allowing people to tap into their natural creativity, enthusiasm and having fun. Play is the spirit that drives the curious mind as in “Let’s play with that idea!” You can bring this mind-set to everything you do.

Make Their Day

Finding simple ways to serve and delight people in meaningful and memorable ways. It’s about contributing to someone else’s life – not because you want something, but because that’s the type of person you want to be like.

Choose Your Attitude

Taking responsibility for what life throws at you and recognizing that you have a choice of how you are each day and that the choice you make impacts others.

The Fish! Philosophy empowers employees to be more effective in any job. When a team lives the philosophy, they improve their culture and create better results. It improves teamwork, employee engagement, retention, recognition and leadership.

Over time, Professional Development with a focus on Standards & Proficiency Based reporting has become the priority and we have lost opportunities to discuss “minutia”, thus losing the opportunity to strengthen our community. Even grade level team time has strict guidelines, which has left staff feeling lonely.

I’ve been thinking about the evolution of education at over the past 28 years, and I feel strongly that returning to TEAMING and making PLAY a priority would strengthen relationships and create a working environment that encourages 2-way communication and togetherness.

In 1997, staff were encouraged to pair up. We had multi-age classrooms, looping, as well as teaming within grade levels and across grade levels. Teams were designed to help with planning, behavior challenges, and brainstorming- many chose their teammates and some were assigned.

I would like to suggest that schools return to the team philosophy. I would also like to suggest voluntary and involuntary transfers that include placing staff members together that would bring out the best in one another.

There was a time when one Wednesday Staff meeting a month was for 2-person teams to have common planning time. The second was for grade level teams, the third was for building meetings, and the fourth was for everyone.

I would like to recommend PLAY and relationship building to truly utilize the natural talents of all staff members, including support staff. We need an opportunity to get to know one another personally- to laugh and to “let our hair down”. I’d like to suggest game nights, and the type of team building that camps do for trust building. In order for us to BE THERE for one another, we need to get to know one another in an informal setting. Many of us didn’t grow up in “the hood”, and are not part of local gatherings in town. I wonder if a night of play that may or may not include families and spouses would initiate a wonderful bonding experience that would make happier staff. We could watch a movie and have popcorn, play spoons, run obstacle courses, and even go to a local camp to use the mud pits or zip-line.

A happier staff creates trust with one another. That, in conjunction with the encouragement and time dedicated to working with each other would indeed impact the school climate and spill down into our classrooms.

But what if the Fish! Philosophy isn’t enough?

I would suggest that schools return to a clear behavioral support system that takes the control away from the students and places it back into the hands of classroom teachers. We need to focus on holding children to high behavioral standards and have clear guidelines within a behavioral protocol. We worked really hard on that a few years ago, but we haven’t used it for years. We need a system in which staff are not feeling bullied and harassed by students. My sister’s school is using a “Quiet Room” run by a qualified staff member, where children who are having a tricky time can go and quiet down and/or complete unfinished work. They use soft light and soft music, with sensory opportunities and comfortable chairs to de-escalate children, allowing classroom teachers to continue teaching. We know that children do better with clear guidelines regarding behavior expectations with clear consequences. My daughter’s school uses demerits, office referrals, in-school suspensions, and an alternative school placement for extreme behaviors. At the alternate school, they use a “boot camp” mentality with the goal to remediate and return children to the regular education system. In our district, we rarely keep children in for recess, send children to the Process Room, or keep them after school for Detention.

Social/Emotional support with the Fish! Philosophy, Teaming, and clear Behavior Protocol would go a long way to improving moral and communication. I for one want to return to teaming, get to know my fellow coworkers personally, and bring FUN back into the school, while holding children behaviorally accountable.

Fun + Accountability = Happy Productive Staff & Students. Let’s do it!

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Early Onset: A Challenge to Diagnose

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     On Thursday, the Alzheimer’s Association is pushing for a new bill in the state of Maine, LD 1072, that will require doctors and other medical staff to be trained in dementia, hospitals to develop a care plan before discharging a dementia patient, and that doctors always disclose a dementia diagnosis.
     This is our story.
     In May of 2002, my husband (age 36) went to a weekend Men’s Retreat at Camp Fair Haven. It was there, that he had a terrible accident. He rolled his four-wheeler going down a steep hill, holding on for 2 of the 3 rotations. Thankfully, he was wearing safety gear and had a helmet on. However, he remained in Trauma Care for 14 days suffering with multiple injuries that included a shattered ankle, broken collarbone, broken ribs, and a punctured lung.
     In hindsight, I do believe that this is where our Dementia story began.
     My husband is a clutz. If he can trip over, fall off, run into, or drop anything, he does. He has never accepted his limitations and has a very strong work ethic. As a result, he has sustained many injuries over time. I lovingly joke that, “He is the reason we have health insurance”.
     That same year we lost the matriarch of the family to cancer: his mother. He hit rock bottom. He could not get his bearings. It was at that time that the doctor put him on the first of many antidepressants. Many made him worse. So we would slowly wean him off one set, and wean him on another. We blamed his mood, social, and cognitive glitches on the loss of the mother that he adored.
     Over time, he has sustained 3 more significant blows to the head, participated in unsafe behavior, began self-medicating with alcohol and had what doctors classified as a classic “Midlife Crisis” in 2009. Our marriage of 22 years nearly dissolved.
     In 2010, my husband lost his father to cancer. Again, doctors continued to treat the obvious: depression. He attended counseling and weekly support groups.
     In 2013, he abruptly lost his job of 17 years after making an error on an insurance claim for a customer, submitting the claim as a “final bill” instead of a “final quote.” He had no idea that the error had been made, until a private investigator knocked on the front door to our home.
     We were denied unemployment, despite hiring lawyer #1 on half-salary, and appealing the decision twice.  His employer insisted that he made the error on purpose, although my husband clearly had nothing to gain.  It was cruel and humiliating. At that time, he was 47 years old.
     Seven months later, he was hired at a competitive company, and worked just 5 months before employers let him go. His employers thought there might be something wrong with his memory and encouraged him to see a doctor. So, a year later, to the date, my husband lost his second job.
     This is when we got serious with doctors and insisted on extensive testing.
     
It took two and a half years to get Social Security Disability. We were denied twice and forced to testify at a hearing with lawyer #2 for $6,000 despite medical paperwork 2 inches thick.
     In March of 2016 my husband had a stroke, which left him in a wheelchair for 10 months.
     
Much of what we have learned, we have learned on our own. Doctors are reluctant to answer questions because “every case is different”, and patients and caregivers are forced to reach and grab at straws. Thankfully, a specialized support group for early-onset coached us.
     
However, the most frustrating part of the diagnosis is that I feel like I have to be a strong advocate and educator to medical professionals and personnel. When I take him to the ER, which we frequent for Urinary Tract Infections and spikes in Blood Pressures, I have to be right by his side. I carry a fist full of papers which include his medical history, the history of his family, his multiple medication list, Medical and Financial Power of Attorney, and a DNR. This was as a result of lawyer #3 & #4, Eldercare Lawyers hired to prepare end of life paperwork & Wills.
     I have to remind professionals to talk to him and look at him while I listen. I have to coach them to put him in a quiet space, to speak slowly and simply, to dim the lights, and keep me with him as much as possible, because Dementia is huge and complicated, and nobody knows how to support and quiet nerves more than the caregiver. A huge part of the diagnosis is FEAR: fear of crowds, people, everything.
     At one point, our Primary Care Physician discussed the possibility of Home Visits. I would like to recommend that as something medical professionals consider. My husband is a very different person at home. If medical professionals want to see an accurate representation of where those diagnosed are at in their progression, I would highly recommend a home visit.
     After both his accident and his stroke, Home Health Care was fantastic. PT, OT, nursing, and social workers came to our home during the day, allowing me to continue to work full-time.
     We are young and many health care facilities aren’t accustomed to working with those diagnosed with Dementia in their late 40’s/early 50’s. As a result, many people have difficulty getting diagnosed, and are misdiagnosed for an extended period of time. At his highest point, my husband was taking 27 pills a day. I worry about the time that we are not longer able to care for him in our home. Thankfully, our youngest daughter and her family were able to move in with us and care for him by day so that I can continue to work full-time. She is taking on-line classes with a focus on Gerontology, with the hope that as he progresses, she will be better equipped to care for him and keep me working. (I’m not eligible for retirement for another 10 years.) Our older daughter has extensive training and has been an additional coach/support system for us. Although her home base is in Arkansas, she comes home for nearly every school break. I often wonder what would happen to my husband if he didn’t have such a strong support system.
     Today he is 53. We are nearing the 6 year anniversary of his diagnosis, and we are told that on average those diagnosed with Frontotemporal Dementia live 7-8 years from the time of onset. At this point, he isn’t receiving any extra medical care: no more specialists. Initially, we reached out to the Brain Center for testing, Dementia Specialist, Neurologist, PT, OT, and saw a multitude of specialists. Although he remains fairly high functioning, he just wants to live his life. Thankfully his PCP has been very supportive of our decision.
     We just need to know that when the time comes, medical personnel are adequately trained in dementia care, a care plan is provided before sending us to next steps, and that professionals are equipped to help caregivers fill out necessary paperwork for long-term care. We need to be able to access local memory care facilities equipped to work with those of early onset Dementia, so that our loved one is not housed in the same area as the elderly or those with differing mental health diagnosis. In the end, we want to easily access our loved one, and be provided the quality and affordable care that he deserves.
    Please consider testifying on behalf of those diagnosed and contact your local representatives regarding LD 1072. I did.
     Cynthia Higgins
Waldo County, Maine
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     Here is a copy of the bill:

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!

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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

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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.

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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.

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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.

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