What about me?

I have been fighting the dumps this week. Honestly, I think that part of it, is the time of year. It has been dreary and gross out all week, mud season has begun, yet we still have snow on the mountain. What has melted is revealing dog waste, rocks in the grass, broken twigs and trees around the border of the property. Even the mailbox looks pathetic as it leans a little too much to the left.

Maybe it’s the fact that we are in the month of “when all bad things happen”. My heart hurts. People are getting on my nerves. I am jealous and a little angry. I am exhausted. The yard matches my emotions and I want to find a hole to crawl in. Our “affairs are in order” and now we just muddle through from one doctors appointment to the next. Waiting. Watching. Praying. Trying to live and enjoy the time we have left. It’s lonely and it stinks.

He looks forward to coffee and treats. So that’s what I bring him. His world is shrinking. He is lonely, but he doesn’t want to go anywhere. Going to functions is exhausting. People say, “He doesn’t act like anything is wrong.” It is true. He rises to the occasion, then he goes home and crashes. Sometimes it takes as long as a week to get him back to his normal. He silently stares, plays his game over and over on the iPad, and can’t finish any thoughts. He sleeps all the time or he doesn’t sleep. Organs people can’t see are malfunctioning and deteriorating. He looks fine, but what is seen is not what is broken.

This means that MY world is shrinking. I go to work and I come home just as soon as I can. I pray that he is safe, I FaceTime him at noontime, I encourage a nap, and ask for his Bp. I remind him to eat. I tell him that I love him over and over. I teach, go home, then teach, and go home. That is what I do.

Today I wonder if God is mad at me. I look around and see happy families, and I am jealous of their perfect worlds- or so it seems to me. It seems like some people never experience adversity. Everything is perfect- “a perfect little woman with a perfect little man, with a perfect little family, that live in a perfect little house and drive a perfect little car, going to a perfect little job, where everything is perfect.”

I have cried most of the day today. I am sad. Gut wrenching sad. Like it or not, my husband is dying and I have to figure out what in the world I am going to do and I don’t want to. I don’t want to lose my favorite man. I don’t want to have to go on alone. I don’t want to sell the house. I don’t want to move on. I am angry. I am angry at God because he could fix it with one nod, and he is choosing not to. How could anything GOOD come from losing my husband?

Today’s  solution: we went on a hot date to the car wash, then we took the long way to the ocean. We walked the foot bridge, enjoyed the crisp sea air, people watched, and took in some natural D. It always makes me feel better. I have stopped crying, have put some coffee on, and am preparing to go back at it again tomorrow.

I think the thing that is the hardest right now is that I have spent a lifetime making sure that everyone’s needs have been met: my parents, my children, my husband. What on earth am I going to do when it is only me? Who is going to worry about me? People ask me what I need and I have no idea. I’m just sad, angry, scared, and tired, and I cannot stop. I have to take this journey whether I like it or not, and I don’t.

Dear Younger Me,                                                                                                                                          Don’t waste one single moment, because the rug will be pulled out from under you in a split second. It isn’t fair, but it’s going to happen. Get ready.                                                       Be brave, Me

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BRACING MYSELF

It seems that I am always bracing myself for something: the next storm, school year, evaluation, birthday, or trip. When you are a planner, and you can’t organize the next big event, it feels terrible. It feels like quicksand under your feet. Most of the time, I can get my footing. Most of the time I can find the inner strength that I need to face the next hurdle. Not Thursday.

Something is not right, and I know it.

I took my data to the doctor before the office opened and waited. Nobody would listen. I wasn’t heard. I just needed someone to say, “You are right, something is wrong.” I needed to be heard. Instead, I was treated like a student in crisis. I was placed in seclusion, I was double teamed, spoken to in gentle tones, and given next steps I didn’t want to take. I left in tears. We spent the day in the Emergency Room, I missed another day of work, and we still don’t know what’s wrong.  Tests, tests, and more tests…

Three days later, I am still tired. You know that tired feeling you get after a hysterical cry? That kind. I wish I could brace myself, but I don’t know what I am bracing myself for. Something is wrong. I know he is a complicated medical patient. He is full of arthritis, has a beat up rotator cuff, and he still wears a leg brace from the stroke last April. We have to monitor his blood pressure three times a day, has compromised kidneys, as well as multiple adrenal tumors, and now gall stones, on top of having dementia. But why isn’t he urinating? I am not a doctor, but I know that what goes in, must come out and why is it so dark? Where on earth is it going? The ER docs say that maybe he has a virus that is absorbing it. Huh? He doesn’t feel sick. He isn’t bloated.

I am bracing myself for something, but I don’t know what, and I am terrified.

He eats very little. He says he feels full all the time. He drinks all day long. He sleeps a whole lot. However, he is still quite active. He keeps the laundry done, he loves to cook, and the house is immaculate. He has started plants in the basement, and has refinished some of our furniture, as well as a couple of beat up pillars in the entryway. He plays solitaire on his iPad, follows news stories on the internet, and enjoys watching TV series with me in the evening while I correct papers. He seems to have become more sensitive to milk, so dairy can be disastrous. However, it doesn’t stop him from ordering a strawberry sundae when we go for a drive to the coast, or insisting on a tall glass of milk with supper. He is mostly happy, and looks forward to me being with him, so I get home to him just as soon as I can.

I wish I could protect him. Although I pray for a miracle, I accept his diagnosis. But I’d be lying if I said I wasn’t scared. I just want him to be comfortable, and for him to pass with dignity when the time comes. I want to do what is humanly possible to have him go from one life to the next, pain-free, peacefully surrounded by those that love him most.

Tell me, how do I brace myself for the day I lose my best friend, my soul mate, father of my children, and the keeper of my heart?

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Happy Dementiaversary My Love

We are coming up to our 4th Dementiaversary. Four years ago, mid April, the world as we knew it flipped upside down. It’s like we have been playing a 4 year card game of 52 Pick-Up, and we are still hunting for the cards. It’s like Alice in Wonderland on steroids, and we are still in the early stages. For the record, I HATE games, and I can’t stand Alice in Wonderland.

I’ve written about Dementia and how much it has stolen from my marriage and my family. I’ve talked about the changes that I see and choose not to see in my husband. I’ve shared the mid-life crisis, being mistreated for depression, the horrendous way that his employers chose to let him go, how he turned to alcohol and to his invisible friends of AA. I’ve shared his medical challenges, his loneliness, and pieces of his life trauma, which included 4 significant blows to the head, and the loss of both his parents.

However, through it all, I choose to focus on the positives. Four years ago, the love of my life received ANSWERS. They weren’t the answers that he was hoping for, but they were answers non the less. Over time, we have peeled away the layers like that of an onion, and now it all makes sense. In fact, we can easily go to back to 2009, when he began to spontaneously combust. In a strange kind of way, it is comforting to know that he had a reason for coming unraveled. As painful as that time was, it takes some of the sting off knowing that he couldn’t help it. His brain was malfunctioning and beginning the deterioration process.

In a strange kind of way, the dementia diagnosis has helped. It gave us a reason why he was acting the way he was, why he fell apart, and why our marriage almost didn’t make it. Although dementia doesn’t play by any rules, it gave us an explanation. It reassured me that it wasn’t because I was a failure as a wife. It has allowed me a chance to reconnect with my husband and show him how desperately I love him, and am committed to him until the end. For that, I am so very thankful.

I choose not to dwell on the negative impact this has made on my family, especially financially. We’ve had some wonderful friends and family who have helped to soften the blow. We have learned to TRUST God to provide right down to the last millisecond, and  have proved that man CAN  live on bread alone. I honestly don’t know what we would have done without our faith, family, and friends, especially during the very early years. Waiting 2 years for SSDI, hiring 4 lawyers, and trying to make payments when the budget is set up for 2 incomes, was nothing short of terrifying.

He is happy, most of the time. Our home was God’s gift to him: 7.5 acres of lawn to mow, with plenty of room to create as many gardens as he would like. We have a huge garage and a 3 story house that never lacks for projects. God knew. He knew in 2010, as we were losing his father, and as he struggled in the workplace, that he would be forced into an early retirement and would need lots and lots of projects. We have a great God who oversees it all and I am so very thankful.

Winters are long, and a stroke thrown in last April, created another hurdle. He isn’t a very healthy man. He has a beat up rotator cuff that needs to be rebuilt and has sore and tired knees and joints, while continuing to struggle with high blood pressure. A stroke slowed him down, forced him into the chair, gave him something different to focus on: 10 months to be exact. He has pushed hard, still wears a leg brace for stability, but will be able to WALK through his gardens this year. Another diversion from the dreaded D word?

We refer to his time home as a forced retirement. Some people enjoy retirement in their mid-60’s. My husband is enjoying it in his late 40’s and early 50’s. He is happy most of the time. Luckily, he likes to be by himself. When he does get out, 3 hours is about all he is comfortable with, and he is the happiest when he is with me. There was a day when I prayed that he would know what it was like to be left behind and uninvited, but never in my wildest dreams would I have wished this on him. Selfishly, I love feeling needed, wanted, and having him to myself so often. I look forward to quiet evenings that are drama free, and relaxed. I am thoroughly enjoying my one-on-one time with my favorite guy. It is a gift from God, and I am so appreciative.

Sometimes he is down. He gets lonely. He misses working: contributing financially and seeing people. He misses his customers, and the comradery of working with a team. He knows what he doesn’t know and that bums him out. Mostly though, he is content. He naps often, drinks slugs of coffee, enjoys Facetiming with children and grandchildren, and plays lots of games on his iPad. He follows Fox News, and watches reruns of the elections and the Superbowl win over and over again. It makes him happy, which makes me happy.

So overall, as we near the 4th Dementiaversary, we are doing alright. We are more financially stable having adjusted to our new income. He is walking and anxiously preparing for and planning the Spring gardens. We are planning a wedding for one of our daughters, and looking forward to celebrating our 3oth wedding anniversary in May. The children and grandchildren are healthy and happy. It’s funny how priorities change, how life resets what is truly important, and how we learn to just go with the flow.

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Professional Plate Spinning

I am a professional plate spinner. It is my claim to fame. At the end of my life, when my family and friends gather around to say their last goodbyes, I want them to say, “She was a multitasker extraordinaire.” They might add, “nerves of steel”, and “boy, she had real world shocks that would take her through the bumpiest of rides.”

There are a lot of things that I hope that people say at my funeral. I wonder if I am the only one that thinks about that day. I do realize that I won’t be around to hear it, but in the end, I hope that I have left some sort of mark. I hope that my life wasn’t just a blip in people’s radar, and that I will be talked about for even a little while. I wouldn’t even mind stories told at my expense, if they brought a chuckle, or better yet, a good belly laugh.

I am a planner, but I have learned to go with the flow. My Real World GPS is top-notch. I’m not saying that it’s easy, and that close friends and family don’t have to talk me off the ledge every once in a while, but overall, I am proud of ME. I haven’t always been flexible. I haven’t always been able to wait. I haven’t always been able to walk away from something I really wanted, even for the good of the people I love most.

A very good friend of mine said to me, “Cindy, not all people are caregivers,” and that honestly surprised me. I thought all women automatically, by sheer make-up, were caregivers. I think it was engrained in me, from infancy, that we were expected to be caregivers. My grandmother housed family members through sickness and death, as did my aunt’s. We lived on a farm, and we cared for animals in the same way. We still miss a day of work when we lose a beloved pet. So it shouldn’t surprise me that I love and care for my loved ones so deeply, so thoroughly, and so faithfully.

Lately, my heart has been heavy for coworkers and friends who are also plate spinners. The featured image shows smiling, but I think a more accurate representation would be a strained grimace. It isn’t easy, and as a fellow spinner, I totally get it. I have been praying a little harder and a little longer for those who are struggling to keep their plates from smashing. Most of us “put on the face” and just do what needs to be done. Sometimes it is difficult to know how close  are to a plate catastrophe.

I hit that point last Spring. It was a scary place for me. Summer Vacation couldn’t come quick enough. I was even scaring myself. I was losing it. I had good reason, but somehow that didn’t help a whole lot. I had no choice but to keep spinning. Nobody could take the plates from me, they were plates that I was called to spin. Somehow, by the grace of God, none broke. Like Moses, I needed friends and family to help hold my heavy arms.

Exodus 17:12
But Moses’ hands were heavy. Then they took a stone and put it under him, and he sat on it; and Aaron and Hur supported his hands, one on one side and one on the other. Thus his hands were steady until the sun set.

Thank God for those who noticed and helped. I will be forever grateful.

My father always said that if we made it through the deep dark valley’s, be sure to have learned the valuable lessons we were indented to learn. Otherwise, the experience was just a waste. Lord knows that I don’t want to go through painful challenging experiences again because I didn’t “get it” the first time.

Mostly, I’ve learned to no be so uptight. I am a perfectionist by nature. My ideal job would be a professional labeler. I would love to tidy up spaces and label where all should be returned after use. Doesn’t that sound wonderful? I could work by myself, listening to some of my favorite tunes, fiddle at my own pace, and have a finished product that I could be proud of and helpful to others.

As a professional plate spinner, I don’t feel like I do an outstanding job at anything. That has been hard to accept. My Type A personality wants to be highly qualified and exceptional in all aspects of life, and I cannot be. I’m not going to lie, that is still tough to swallow. However, I have to remind myself daily that if I’m going to keep all plates spinning, I have to give all the plates equal time and energy. When one plate gets more attention than the other plates, one drops.

I have to be honest, my physical and spiritual plates are spinning slowly. I need to ramp them up. I am struggling with the friend plate as well. I realize that some plates need more attention than others, but I miss friend interaction. This is a tough time of year. It is cold, the heat is on full blast, we are tired of being cooped up, and we need sunshine in the worst way. I look forward to Spring, and warm weather, and being outside, and sunshine. Did I say sunshine?

We are at a quiet place with the husband plate. His blood pressure has finally stabilized  for the moment. He is walking much better AND picking up his foot to clear the floor! He still wears a brace because he cannot move his right lower leg, ankle, or foot as a result of the stroke last April. However, he isn’t using the walker or the wheelchair in the house or on short trips any more. He got a greenhouse for Christmas and is anxiously waiting to start plants in the basement. He has refinished a dresser and is now working on sanding down the kitchen table, which keeps him out of mischief most of the time. He still cleans the house, bakes, does the laundry, takes care of the dog, fills the stove with pellets, and enjoys watching political commentaries on the iPad. At this time, we are not concentrating on abilities he has lost. We are celebrating what he still can do, while counting down the days until he can get back outside.

I couldn’t be a professional plate spinner without my Maker. It is by His strength that I can get up each morning and head to school. It is comforting to know that He is watching over my husband when I can’t, that He is putting his protective arms around my children and grandchildren, and that He will provide for my needs no matter what. I stand by His promise that “all things work for good, for those called according to His purpose”, and I know that in the end, I will be okay. All will be well with my soul and that’s how I face the future.

So to all those Professional Plate Spinners out there in Cyberland, I want you to know that you are not alone. Somehow that brings me comfort, so I suspect it will you as well. The best advice I can give you is to just keep trying. Every day is a new day where we can try again. Keep searching for JOY and may your plates never hit the floor.

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Make My Day

44599175“Go ahead, make my day” is a catchphrase spoken by Clint Eastwood in the 1983 film Sudden Impact. Back in the day, he was one of toughest male actors on TV. He was a bad cat and he didn’t take anything from anyone.

I am not a confrontational person, however, I do have an opinion. I am also honest to a fault. If you don’t want to know what I think, don’t ask.

Everywhere I turn lately, I feel controversy. I can’t help but think of The Grouchy Ladybug who asks everyone she meets, “Hey you! Do you wanna fight?” I don’t like it. It makes my skin tingly, my jaw tightens, and I want to retreat to my safe places.

I can’t turn the TV on without hearing about HATE and CORRUPTON. I can’t look on Facebook, open a magazine or newspaper, and I can’t even go to the local store without hearing about someone being mad at someone else, or a group of people bashing another group. It is really affecting my mood.

This week we had the evaluation discussion at school that included Marshall goals, SLO’s, rubrics, yearly growth, catchup growth, data points, glows and grows, evidence to prove our integrity-2effectiveness… yada, yada, yada. I would rather have had a tooth extracted. It was the most uncomfortable meeting that I’ve attended in a while. The only thing I got from the meeting was that no matter how hard I try, I will never be good enough. There is always something I could be doing better at, and that the top score is not attainable even to God.

So, I retreated to one of the wisest teacher mentors of the 80’s (and way too many sugar cookies with icing). I knew that Mr. Miyagi would talk me off the ledge.

 “It’s ok to lose to opponent. It’s never okay to lose to fear.” I am not perfect. There are other teachers out there who are much more talented than I. However, I do expect to be noticed for what I am successful at, for people to be fair, and not be overcome with fear in the process of defending what I do and why. Goal #1: I need to work on not being fearful.

 “Never put passion in front of principle, even if you win, you’ll lose.” I try hard not to be emotionally charged. I work to be rational, making calm and level-headed decisions that are well thought through. Goal #2: I will close my mouth and think through what I want to say before I say it or write about it.

“To make honey, young bee need young flower, not old prune.” If I want to become better at what I do, I need to surround myself with people and tools that will make me stronger. Mom and Dad always told us to find friends and coworkers that we were a lot alike, or someone who we wanted to be like, in order to lift us up. Goal #3: I will continue to seek out good role models and teammates that bring out the best in me.

“Walk on road, hm? Walk left side, safe. Walk right side, safe. Walk middle, sooner or later…get squish just like grape.” Goal #4: I will continue to have an opinion and chose a side, standing on principles that are grounded, fair, and Godly.

“Man who catch fly with chopstick, accomplish anything.” Goal #5: I will continue to have tenacity and grit. I will work hard, tweak when necessary, and work hard again. I will not give up.

When in doubt, “Wax on, wax off.” Some good physical labor always puts life back into perspective. I just love working on our property. Weeding the garden provides exercise, time for reflecting, and it looks good when I’m finished. Goal #6: Get off my butt.

I think Mr. Miyagi had the right idea. Following certain guiding principles, and living with integrity is what my focus will be. This year, my goal is to simply be a better human being. There should be a spot on the evaluation for that.

Maybe just maybe this would force joy, caring, cooperation, and bring humanitarianism back. I’m willing to give it a try. Go ahead, make my day and I’ll make yours.

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Another Year Wiser?

It is New Year’s Eve. Another year has passed. It is a natural time to reflect, to create new goals, and to start clean once again. I tell my students that “Every day is a new day.” So is tomorrow merely a new day?

It is amazing how my life perspective has changed. I have developed some great “real world shocks”. I should get extra credit for being able to dodge, recalculate, and regroup. I have to admit that I haven’t done it alone. There are key people in my life that have made it much more bearable, and for that I am so grateful.

I am proud of myself. I have successfully peeled off a few stubborn pounds (and have a few more to go) by focusing on good nutrition with a slow and steady gait. Physically, I feel much better than I did a year ago. My diet approach: use what worked for me from every diet I have ever tried: a little of this and a little of that. I have learned that it takes very little food to sustain me and even less to lose weight. This bums me out because I love to eat. So, I hold myself accountable by keeping track of my calorie intake and eating very simple meals. When I am at the top of my game, I eat mostly lean protein, non-starchy vegetables, and fruit for snacks. I limit breads and dairy to a bare minimum, and have little to no sugar. In 50 years, I have learned that sugar is my enemy. If I have a little, I crave a lot. I won’t leave it alone. It is ridiculous. I have to be stubborn, pray daily for will-power, and accept being hungry most of the time.

Dieting is a lot like exercising. It stinks while I am doing it, but I feel so much better when I stick to it. I am determined to be 50+ and fit. I received a Fitbit for my birthday last year and received an upgrade this year. I love it. I have become much more aware of how often I move. I have taken more walks with the dog as a result of my new arm band, weeded more gardens, and shoveled more snow without complaining. I’m proud of myself when I meet my daily goal, and excited when I go beyond.

I am getting more rest. No I am not. That is a lie. However, I do track my REM sleep and encourage myself to take more naps with my favorite man. It is forcing me to STOP and enjoy cuddling with him, while getting recharged. I rarely meet my sleep goal and am happy to get 6 hours of good rest. It does help me to recognize WHY I am struggling when I am having one of “those days”.

I am determined to be positive. Yes, sometimes I get scared and overwhelmed.  Sometimes I feel defeated, anxious, angry, and frustrated. However, I refuse to hang out there. Maybe that is why I am ending 2016 feeling like, “That wasn’t so bad.” It is true that we endured a whole lot, but everyone has STUFF. It’s all about how I choose to handle it, and I choose to file it and move forward.

Life is like one huge GPS that recalculates constantly. Change happens, and we can fight it, or go with it. I have learned to plan what I can, and tweak when necessary. I will control what I am able and let the rest go. I am determined to be the best ME, that I can be. I am going to take care of myself by doing what makes me happy, and healthy. I am going to enjoy each day, smell those roses and live my life because I only have just one life to live and I want to do it well.

May you all have a healthy, joy filled 2017 with a phenomenal real world GPS.

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What Are We Dealing With?

It drives me crazy is that nobody seems to know just what we are dealing with, why he has dementia, or how quickly the disease is progressing. I feel like I have to be my own detective and it makes me wonder what people who don’t have a Type A, perfectionist, bull-dog, advocating for them, do. I want to know, yet I don’t.

He was diagnosed with Frontotemporal Dementia (FTD) retroactive to April 2103 and we are coming up to our yearly check with the dementia specialist. I am anticipating the doctor’s usual question: What have you noticed for changes?

I have to think about it early, otherwise I will just say that I haven’t noticed any change over the past year and we will go on our merry way for yet another year. I need time to reflect and journal in order to prepare.

I tend to measure slow, subtle changes by landmarks on a timeline.

January 2016:    We were unable to manage my husband’s very high blood pressure (At that time, 198/136 was considered a low Bp.) We worked closely with the Primary Care Physician, but could not get it under control.

April 1, 2016: My husband had a stroke, lost the majority of his right side, spent 2 weeks in the hospital and rehab, went home in a wheelchair, and received 7 months of OT and PT with In Home Care before being discharged. At this point, they have done all they can do. It is now up to him to practice. MRI scans from this time indicate that he could and should receive full mobility again over time. He is only 50 years old.

May 2016: The Geriatric Psychiatrist looked at his scans while he was in the hospital from a dementia standpoint. They showed slight changes that were subtle and not diagnostic. There was a little more atrophy, but not localized to frontal or temporal regions. We were told that atrophy is a very crude measure of dementia severity and that repeated neurological testing would give us a lot more information.

August 2016: My husband displayed cognitive decline. He was zoning out more, struggling with answering questions, taking “mini vacations”, getting frustrated, overreacting, had less of a filter, and began having bowel and wetting accidents that left him weepy and frustrated. He had another eye exam and retook his Field Test. He had regressed significantly since April, so was sent to an In-House Ophthalmologist. The doctor said that the regression: loss of peripheral vision & seeing spots and lines, was not eye related. They were dementia related, and the doctor requested to see my husband’s latest MRI. After looking at the images, the eye doctor said that he may not drive and that there is nothing further that they can do to help his deteriorating eyesight.

October 2016: He was admitted into the hospital for extremely low blood pressure, with dizzy spells that caused him to pass out. Doctors removed 2 Bp medications and drastically reduced 2 more. A week later, he was admitted for high blood pressure and an extremely fast heart rate. (It had more than doubled.) Doctors put him back on 3 out of 4 of the meds they had removed the week prior, at a lower dose. They are now testing him for Pheochromocytoma, and have referred him to an endocrinologist to review meds and whether testosterone injections are hedging his Bp up. He has also been referred to a cardiologist to help manage medication, blood pressure, and cholesterol.

Although diagnosed with FTD: Semantic Type. I feel his symptoms seem to present more like Behavioral Variant FTD. The diagnosis is a guessing game based on clinical evaluations and MRI images. That’s one of the frustrations of this disease: Guessing. Lots of guessing.  He still has strong verbal skills, occasionally struggling for words, but not often. I can still have great conversations with him and he has helpful feedback. He is still cognitively strong and a teammate that I have to moderately oversee.

When I reflect back, I note behavioral changes since 2009. The most glaring changes were how he interacted with people. He struggled with getting along with coworkers and customers at work and claimed that the mistakes that he was making, were people “picking on” him. At family gatherings, he would blend into the woodwork and hide from company. He began hanging around our son’s classmates, and became reckless with alcohol- drinking and driving, unsure of where he was or how to get home. He slept on friend’s couches instead of coming home. I left him for 4 days before he noticed I was even gone. He would go places that he forgot he went to, and forget to go places he was sure that he had gone to. He was treated by our PCP for depression and alcoholism. We were told that he was experiencing a classic mid-life crisis. During that time I asked him if he wanted our marriage to work, and he said that he “didn’t know”. It should be noted that we have been together since we were 16 years old and we were, and continue to be, each other’s best friend. After frequent trips to the doctor’s office, he agreed to therapy and to attend AA. He became a leader and when he messed up, he’d mess up with his AA buddies. His “secret friends” as I called them became all he wanted to hang out with. They went to  top-secret places, leaving me in the evenings as many as 6 days a week. I would wait in fear by the phone, praying for his safety on the roads. In July of 2012, he was pulled over with a DUI, he lost his license for 90 days, and had to take a DEEP course before recovering it. He was a Selectman for years, a Sunday School and Youth Group Leader and was highly regarded in our community. His indiscretion was in the paper, affecting his small town reputation, so his self-esteem took a nose dive. He couldn’t forgive himself and because of so much lying, I couldn’t trust him. I resorted to checking his phone and computer in order to keep him safe. It was like having a rebellious teenager in our home again.

He is accident prone, but he has always been. If he can trip over it, run into it, slide down it, or flip over it, he will. He has always been like that. Since 2002, he has had 4 significant blows to the head. He rolled his four-wheeler and was in trauma care for 2 weeks, rolled his pick up, fell off a ladder onto his head, and slipped on ice and hit his head on a snowplow blade. It seems like the dementia just magnifies his weaker tendencies. He loses things, and leaves things all over the property, but he has never been able to find his wallet, he has always lost money, his belt, his watch, and his jacket. Now, he can NEVER find them.

My husband is a sensitive soul with a soft heart. He used to be very in tune with the emotions of others, now he just watches me as I cry. He doesn’t seem to know what to do. He recognizes that I am sad and just watches me. He doesn’t like it, but he doesn’t do anything about it. He doesn’t try to console me by holding my hand or putting his arm around me like he used to. He will hug me back, or close his hand around mine, but I have to initiate most physical contact. When he gets upset, he gets really upset, sometimes losing his cool and his filter. For example, in a crowd, he might yell loudly, “Get the f— out of my way” or if the dog gets loose and stops traffic, he might announce, “If I had a gun, I would shoot her!” He spends a large part of his days playing Solitaire on the iPad over and over again and watching lots of National Geographic on TV. Lately, he has been obsessed with politics and Fox News.

He does do basic household chores: dishes, laundry, sweeps and vacuums the floors & makes the beds. He has figured out how to mow the lawn, work in the gardens, and do small projects on our 7-acre property despite being in the wheelchair. He uses the lawnmower like a golf cart and it gets him everywhere he needs to go. He chases dog/cat dander, becoming more obsessed with cleanliness. It has always been important to him, and he has always been very particular, but it has been heightened.

He is still able to shower, shave, and tend to his physical needs, even cleaning up after himself after wetting accidents.

He has developed a sweet tooth, which is new for him. He has never been a huge sweet eater. He loves to bake, especially Christmas cookies.

He lost his Managerial Position in 2013 because he wasn’t able to multi-task and keep up with the high demands of a busy tractor dealership. However, with a list, he is able to stay focused on household projects. His ability to remember seems to come and go. At times he surprises me and remembers things I don’t. Other times, he can’t remember things that were fairly recent. It’s weird. Sometimes he has it. Sometimes he doesn’t.

He doesn’t always think things through. I have to watch him carefully because he doesn’t always use good judgement. For example, he wouldn’t hesitate to carry a 40 pound bag of pellets up over the stairs, despite his weak right side. However, his impairment in judgement has led to needing to hide the checkbook and credit cards, because he was scammed by a work at home agency just after he was diagnosed, and he has purchased  crazy items over the internet. He has struggled with pornography and heightened sexuality that has been uncomfortable to address. He has become more socially withdrawn and less interested in family and friends. When taken for a day out, 3 hours is about all he wants to be away. He’d rather be home, although he still looks forward to attending church on Sunday. At times, he behaves inappropriately with strangers, especially on social media, losing his social manners by calling people names. He acts impulsively and has broken laws by drinking and driving (not over the past 3 years, although I have no doubt that he would sneak an alcoholic beverage if he could talk someone into bringing him one).

The only real compulsive behavior that I see right now, is the constant fetish over pet hair and the repetitive playing of games over and over on the iPad. He does get into patterns of TV series, but has always been very particular. We had a maroon carpet at our house on the farm and it showed every piece of lint. He was forever picking up pieces off the floor. He leaves us maps when we mow for him, because all the lines need to go the right way, and he has always yelled at people for riding their bikes across the grass, leaving lines.

I am not noticing binge eating, however, he is struggling more with this weight. I attribute it to a more sedentary lifestyle and being in a wheelchair. He isn’t happy with this, because he has always been slim and very physically fit. The extra weight and the graying hair makes him feel aged and he is very self-conscious about it.

There are some deficits in planning and attention, and he continues to take “mini vacations” even mid-sentence and will act like he is just stopping to regroup. Sometimes he will come up with the rest of his thought. Other times, he ends up abandoning the sentence.

The incontinence that was an issue at the end of the summer, has become less of an issue of late.

I still monitor his medication and when he lost the ability to tie his shoes, he never regained it. He sleeps a lot (10-11 hours/night), a naps nearly every day. (3-4 hours/day). Sometimes he acts 6, sometimes he acts 13, and sometimes he acts 50… but he is still 50, and still my husband, and so it is a delicate dance. He deserves respect, he needs to be needed and to feel like he is taking care of me, but I have to watch over him. I watch from afar, ready to step in and help if necessary, but nevertheless watching.

What does this all mean? We are told by the Neurologist, that the Chronic Migraines, which he is treated for every 3 months with Botox is not dementia related. We are told that the high Bp is also not dementia related. However, the Ophthalmologist reports that his decline in eyesight IS dementia related. We are told that his MRI shows atrophy, but not localized to frontal or temporal regions.

He is a complicated medical challenge with arthritis, Chronic Migraines, High Bp, High cholesterol, low testosterone, sleep apnea, depression, acid reflux, and multiple allergies. The most recent diagnosis: a beat up rotator cuff. The Orthopaedic Surgeon would like to repair the torn muscle and bone. This will result in a  3-6 month recuperation and most likely 9 months before being “back to normal”. This was originally scheduled for the day before Thanksgiving, but has been postponed until he is medically cleared. Personally, the thought of going back to square one, with round the clock care, and therapy, is more than I can agree to at the moment. Totally selfish, I know. This has left him frustrated, angry, and quieter than usual. I hate it when he is disappointed with me.

I can’t help but pray for a miracle. Maybe more Neurological testing would tell us the speed of progression and what type of dementia we are working with. Maybe something can be done to slow down the progression, or perhaps he has been misdiagnosed. Maybe the cognitive changes are a result of Blood Pressure that has been difficult to manage and side effects to years of a high level of medication (15-25 pills/day). Perhaps the 4 significant blows to the head are the cause and his brain will heal over time. Maybe just maybe everyone is wrong, there is a simple explanation, this has just been a bad dream, and we will enjoy the golden years together after all. Is it wrong to hope?