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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The First Time Again

It’s been 5 years since the dementia diagnosis and at this time, he is doing amazingly well. He has shown regression, but it is slow and mostly unrecognizable to the ones he sees regularly. We thank God every day that he is mobile and still has his language skills. He is mostly happy as long as we keep him on a schedule and don’t ask too much of him all at once. We generally learn by failure, since even the best laid plans don’t cooperate with dementia.

Over the past few days, he has crossed paths with people he has known for a very long time, but clearly didn’t recognize. One was his cousin and one was a coworker that he worked with for 17 years.

This is the best advice that I can give anyone who bumps into us:

  1. Introduce yourself. It feels funny to you, but it takes a whole lot of pressure off him. Then, don’t ask him questions. Just tell him about yourself and how you know him. When you hug him or shake his hand, bells and whistles are going off in his head, “Yikes! This person knows me and I don’t know him!” Take the pressure off, by just talking about how you know him and share YOUR memories. Often times, if you keep talking, he will make a connection. Sometimes it is after you walk away.
  2. My husband often talks about past coworkers, friends, or family, but doesn’t recognize them when he sees them. From what I have read, it is because he is looking for a younger you. For example, in the end, he may not recognize my brother, but will recognize his son and call him my brother’s name. My grandmother used to do that with my father and brother.
  3. Don’t correct him. Just go with it. When dementia patients are corrected, it shakes them up and they will stop talking and begin to stutter, stare, shake, or rock. Don’t be alarmed if this happens. It is how they self stimulate and it is a calming technique.
  4. Stick to conversations that you know they can respond to. Think about what you know they like to do. For my husband, safe subjects that he can always contribute to are: walking by the water, gardening, mowing, chickens, baking, coffee, and the baby. These are things that are on his mind and in his bubble constantly.
  5. He is the same old guy. The same things that bothered him before, bother him now. The same things that brought him joy before, bring him joy now. It’s just heightened, and he’s quirkier, but he’s the same old guy.
  6. Too much stimulation and not enough breaks are a deadly combination that isn’t going to end well so we stick pretty closely to a schedule.
  7. He rarely hears from or sees people and it hurts his feelings. He feels forgotton. People really need to come to see him. Since home is his safe place, they need to come when he isn’t napping and not stay long because he tires quickly.
  8. Sleep is very important because his brain has to work so much harder than the average brain to do regular things. It exhausts him, so calling ahead and giving us a chance to prep him for your arrival will set him up for a successful visit with you. His clearest time are between 10:00 am -noon and after 4:00 pm.

So, if you have the pleasure of spending time with someone with dementia, the most important thing to remember is that you are most likely meeting for the first time again. Introduce yourself, tell him about yourself and the connection you have with him, and enjoy. You will be blessed.

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In Like A Lion

Generally, the saying “In like a lion, out like a lamb” is reserved for March, but I think it is fitting for January 2018 as well. For us, the end of December and beginning of January have been lion-like.

The Christmas season was pleasant and quiet. We tried very hard to follow traditions, but do all things in moderation, understanding that my sweet husband needed sensitivity and flexibility. Our middle child was home for ten days, our oldest and his family are safely settled into their new duty station in Japan, and our youngest and her family are nestled into the basement. We shopped, baked, decorated, wrapped, listened to Christmas music and watched the Christmas classics.

Christmas Eve became gathering day for our family at the farm since winter weather was harsh on Christmas Day. It was strange, but stretched out the holiday into a more doable weekend. My favorite man did amazingly well at the farm, and was able to remain with us throughout the meal, gift giving, and most of clean up before needing to be brought home. 26001162_10213844378697693_8189500081275403014_nThat evening we slid in last to the Christmas Eve service and by “coincidence”, there was only room in the way back. It worked well, and we were able to scoot out first once the service was over. My favorite man was only slightly shaken by people he knew he should recognize but didn’t, and was happy to see a familiar face. Christmas day was equally as quiet. We calmly enjoyed breakfast, opened a few gifts, napped in the afternoon, and FaceTimed with our oldest and his family. Honestly, it was a heavenly weekend despite the fact that we all were battling colds.

December 26th was our youngest grandchild’s birthday and we gathered with close family for chopsuey and cupcakes. My favorite man was so sick that he missed the entire celebration. By the 27th, his temperature spiked and held at 103 degrees. He complained of a headache, bodyache, and coughed constantly. At that point, the doctor recommended taking him to the Emergency Room. When he didn’t fight us, we knew he was sick.

26001090_10213855179407704_3808837877463324154_nAt the Emergency Room, we learned that there has been an influx of illnesses and it was verified by our Primary Care Physician. The good news was that he tested negative for Influenza A, but the bad news was that he tested positive for Respiratory Syncytial (sin-SISH-uhl) Virus, or RSV and Pneumonia. Infections can increase confusion and can speed up the progression of dementia, and unfortunately, we have seen that over the past 10 days. My favorite man has become quieter, much more confused, easily agitated, and is on food strike.

It is the strangest thing. He gets so excited to see me or hear from me. Yet, when I call or come home, I get a quick response. Then he puts his headphones back on and returns to his world of politics, Forensic Files, or X-Factor. I have become his security blanket, and as long as he knows I am around, he is content and he goes back into his world. When I kiss him, there is a delayed response, no matter how many times I try. He rarely touches me, but doesn’t retract when hugged, kissed, or when I hold his hand. He doesn’t initiate affection any more, although I know that he loves me.

I still leave him notes each day, and he holds the phone until I call at noontime. He looks forward to my FaceTime, even if it is short. When I can get him to eat, he continues to love sweet treats, coffee, Pepsi, pizza, or anything he can put on the grill. He continues to cook and clean, although he forgets to shower, can’t remember how to shave, and can’t tie his shoes. He does the laundry, but can’t remember how to separate the laundry into darks, colors, or whites. He just tosses them all in together.

But I am losing him. On December 29th, my mother went into the hospital with bronchitis and a mild heart attack and she was readmitted into the hospital January 1st for pneumonia. It was the same day that my husband didn’t recognize me for the first time.

I wondered how I’d handle it. I’ve been expecting it for a long time. In fact, I was so nonchalant, that I have wondered if something was wrong with me. I didn’t cry. I just told him that I was his favorite wife, and he seemed okay with it. The majority of the day, I believe that he just thought I was someone who loved him and that he was supposed to love. The good news is that he later called me by name. However, it was a glimpse into what is to come and I know that.

I don’t quiz him. I don’t want to know who or what he remembers. It shakes him up, because no matter how hard he tries, some memories just don’t surface. I don’t ask him how many siblings he has or what their names are. I don’t ask him to recall anything. I just tell him about things. When people get close to him and quiz him, it frightens him. However, when they introduce themselves, it gives him to clues to either remember or fake it.

I hope and pray that he bounces back, but I am a realist. I know what to expect. I have accepted it. Maybe that’s why I don’t cry much any more. I cried a lot at the beginning, and I suspect that I will when it is all over. But for now, I just do my best to reset and recalculate.

In a way, I feel like I have PTSD. I have shared with friends that I feel like a piece of driftwood that keeps smashing against the rocks in the ocean. Although the trials around me haven’t necessarily been mine, I have been damaged by association. A lot has changed since 2009. It was the beginning of the change in my husband’s behavior and I will forever be scarred by some of what I have been through.

I do think that this experience has made me more mature. It has given me an opportunity to live a Christian testimony. However, I am not going to lie, I just completed a devotional on Trials that I wanted to jump up and down and stomp on, over the past 10 days. Finding joy, peace, and blessings is really tough when the heat is on full blast.

26167638_10213924703185755_7033773497360590356_nSpeaking of heat… it is colder than the Arctic here in the northeast. We have been battling -30 degree wind chills, and 30-40 mph gusts of wind. We have had snow, and ice, that is driving us all inside to huddle around our stoves, dress in layers, and wrap up in blankets. Heating our beastly castle is very challenging and as an answer to prayer this week, we were able to fill our oil and propane tanks for another round of frigid weather.

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The good news is that in the middle of the chaos my girls took me out for my birthday. We saw Pitch Perfect 3 in theaters after a wonderful lunch at Applebees. We enjoyed reclining chairs, sweet treats, and cupcakes made by my son-in-law when we returned home. It was a nice day. I even got a sweet note from my husband- which was extra special because he rarely writes any more.

After 2 trips to the airport, we finally got our oldest daughter back to Arkansas in time to start school. The first flight was cancelled, and the second flight had such tight connections that she had to run at all three airports. It did a number on my nerves, but by New Years Eve she was safely in the arms of good friends- but without her luggage. They came the next day!

Today’s prayer is to thank God for all He has done to keep me healthy so that I can be what I need to be for my family and for my favorite man. I want to thank Him especially for pricking the hearts of those in my circle, to encourage and hold me up when I feel weak, scared, or when the burden is becoming just too much to bear. I want to thank Him for family, friends, and coworkers who are committed to stepping in and praying, especially when loneliness begins to overtake me, because that is the worst. More than anything, I pray that when the time comes, my support system will rally around my family and I because we are going to need all the help we can get.

May January go out like a lamb, and may we get a little relief from the rough seas of life in the weeks to come. This piece of driftwood is feeling a little haggard these days.

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For The First Time

My husband experienced the opportunity to eat his soup bowl yesterday.  It truly was his first time. It made me think about dementia, and how his firsts are going to increase, not decrease.

He doesn’t have many firsts at this stage, but sometimes he tells me that he has never been somewhere before, and he has. Sometimes he tells me he has never met people that he has known for years. Church has been particularly difficult for him. He says that there are a lot of new people attending, and wonders where everyone he once knew have gone. He thinks they have all transferred to another church.

It makes me think about the fact that I love getting up before everyone else in the morning. I cherish the newness of each new day. I delight in the sunrise and the way that the sunlight lays across the valley. I enjoy looking at the mountain range and the colors of the trees across my brother’s maple orchard. I look forward to seeing the farm and the church in the distance, that reminds me of both my church and biological family who pray for us and support us from afar. Each morning brings similarity, yet fresh subtle differences, especially in autumn.

Perhaps the increased newness is a gift from God. Imagine, each day as a new day. It’s like a lifetime of second chances. The failures, shortcomings, and just plain horsepucky that crosses our path each day is forgotten, and a new fresh page has been supplied. How scary in one respect, yet exciting in another.

As I write this, my 10-month old granddaughter is reaching for the keys and running her hands across the keyboard. She removed the key protector and is placing it on her head. She has recently learned to wave “hi” and “bye” and is taking steps on her own when held by her hands. She seemingly learns something new every day.

What if we thought about dementia as an opportunity to learn new things every day, much the same as our youngest grandchild? Is it always going to be bad? What if we didn’t think of each decline as a negative action? Instead, we thought of it as an opportunity to look at life experiences with a new lens, for the first time again? We often think, “If only I had a redo button, I would have done ______ so much differently.” Perhaps dementia gives the gift to hit the redo button.

I find it interesting that some will say, “If only I could go back to High School, college, early 20″s…” In Dementialand, you kind of do. When we first realized that something was not right, my husband was going through a mid-life crisis that brought him back to his rebellious teenage years. What we didn’t know then, was that he was sick. His brain was damaged, and that it wasn’t his fault. Whatever the cause, doctors guess too many blows to the head and he was regressing. Having experienced my husband’s rebellious teenage years twice, I do not wish to go back to that time.

However, I do enjoy seeing my husband’s face light up when I bring home a “new to him” movie, or introduce him to a “new to him” friend, or take him to a “new to him” place. I enjoy taking him to the ocean to see what is new each day. I love how his face lights up when I bring him his favorite coffee or a sweet treat from the store. I love how he has developed a sweet tooth, and he delights in candy, ice cream, donuts, and cake. It makes my heart happy when he is happy.

Perhaps looking at each day and each experience with new eyes, with a new lens, we would appreciate life, and our daily gifts and blessings rather than blow through each day missing them. So today, I thank God for the all things new and old. I thank him for my husband, my children and grand children, parents, siblings, nieces, and nephews. I thank him for my beautiful home, church, job, community, and friends. I thank him for the horsepucky, because it has made me the person I am today. I am even grateful for dementia and complicated medical issues, because it has brought me to the place where I notice and I appreciate, and feel closer to my Maker.

May each new day be like eating a soup bowl- perfectly new and fantastically delicious.

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Debt, Dieting & Dementia

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Lately, the words that rattle around my brain are the three D’s: Debt, Dieting, and Dementia.

It is tax time, and I have been gathering receipts, collating data, organizing, and paper clipping to get ready for inputting financial data from 2015. As I wade through the calendar and checkbook to record doctor’s visits and the events of the year, I am reminded that some were good. Some were not so good.

My mind is in a swirl. The refund isn’t going to be as nice as the last few years since the SSDI income is taxable and Federal taxes weren’t withheld from our settlement in March. I don’t know why I am surprised that the government takes taxes out of the disabled. It’s just that I had hoped that we would be able to put a pellet insert into the fireplace and to pay down some debt. Data input isn’t complete but it isn’t looking promising so I am in mourning.

I do my best thinking in the shower, and it occurred to me that solving the debt problem is much like dieting. I have been actively trying to peel off some unwanted pounds since school started and it has been slow and painful. I have had to deny myself of some pretty sweet deals (like that?) but it is finally starting to show. It occurred to me that in order to get past this debt load,  it is going to have to take some more time.

Time…

This week we met with the Neurologist. We got the same information that we received from the Dementia Specialist. It looks like FTD. It is progressing like CTE. It is all a guessing game that has the same terrible ending. Nothing is going to change it. The only variable is how fast it will progress and nobody knows the answer to that question.

The dementia takes all my decision making to the next level. Will he be able to lug wood and monitor the fireplace safely next year? What is the time table? I want to know, yet I don’t want to know. If I knew for sure that the Dementia was going to move slowly, I’d wait another year. But what if it doesn’t and what does that mean for next winter?

Next year it looks like we will have help through the winter. My son is being transferred to Bahrain for a year, and my daughter-in-law and our grandchildren are planning to stay with us. I’ll have help daily and anther set of eyes. Our youngest lives 10 minutes away and checks in often and we have family 4 miles from the house. This puts my mind at ease a little since it will allow me to go to work each day without worrying.

Debt, Dieting, and Dementia. The 3 D’s that swirl around my head. Little voices tell me to, “get the debt load down while you can before you are alone and living on one income. Get those last 23 pounds off so that you can be healthy and strong for your husband’s eventual decline and the challenge of your life”. I know what to expect, nothing is going to change it, so I need to get ready.

I have control over my diet, a little control over my debt, and no control over the dementia. Of the 3D’s, I’d pick debt and be enormous any day.

 

Nothing To Say

1016417_10202572532788590_501963023_nWhat do I say when well-meaning people ask me how I am  doing? The real answer is that I am numb, sad, and I pray every night that the doctors are wrong. Family, friends, and coworkers don’t want to hear that and they don’t know how to respond, so I just tell everyone I’m fine. But it’s not true.

Life as I have known it will never be the same. As much as I try not to think about it, it is always on my mind. The fact is that I’ve been tossed around like an angry wave, and I am left numb. On the outside I am developing tough skin, nerves of steel, and I am rarely shaken. This week we took two trips to the ER. I packed my school bag with papers to correct, supper in my lunchbox, an extra sweater because the hospital is often cold, and the journal that I keep track of my husband’s health in. I didn’t even call the kids until the next day. Trips like this are becoming the norm.

Most days I pretend everything is the same as always. I even convince myself that nothing is wrong. I go to school each day, correct papers every evening, and snuggle next to my husband every night. Routines feel good. I only want to be around people who lift me up. I can’t even read many posts on Support Group sites because it brings me down, makes me sad, and terrifies me. I prefer to be in the land of denial. It is safe there and I choose to inject myself in that safe country. If it wasn’t for the headaches and the blood pressure that he just can’t get under control… If it wasn’t for the doctors appointments and the many trips to the pharmacy, I could almost pull it off.

So how am I doing? I have nothing to say.

He Used To Be The Life The Party

When I first met my husband, at 16, he was terribly shy. Then he joined the Navy and they knocked the shy right out of my guy. He became the life of the party. Well, sort of. He has always enjoyed gatherings and he loves to host them. He most especially likes to sit in a small group away from the confusion and catch up with those he hasn’t talked to in a while. When he has had enough, he can be found wandering around the yard looking at the flowers, no matter where we are.

Things are different now. Gatherings are terrifying. We are learning some strategies, mostly by trial and error. At the latest wedding, we packed a bag of tricks. My husband loves to play solitaire, so we brought a fully charged tablet. We brought a book of word searches, a worry stone, and spearmint chewing gum. Family thoughtfully placed him with my brother and sister-in-law, as well as my parents. This all helped. He made it five whole hours, not so gracefully, and not by his own free will. But he did it.

He says that noise and confusion are more than he can handle. When he goes for a drive in the rain and in the dark, he says he feels like the world is closing in around him. This is why I drive. I find it fascinating trying to figure out how his brain works. When he mows the lawn he goes so slowly that I have to laugh. I am told that because his mind has to work so much harder than average, the slower speeds seem fast. The challenge is finding things for him to do that are not overly stimulating, where things can move at a slower pace, yet keeping his mind active.

He spends many days puttering and straightening. He does all the laundry and our house has never been cleaner. Last week I came home to find all of the candles out. He proudly proclaimed that he got them all out and put candles in each and every candle holder that we own because he knows I like them. He is right, but I am not going to lie, it looks like we are preparing for a seance!

Honestly, he prefers to stay home. He goes to our family farm, occasionally puts his pole in the water at the local pond, but mostly he feels safest and the least stressed at home. He loves visitors and rarely gets enough courage to go anywhere.  This week, we were invited to dinner with a couple from our church and he had the most wonderful time. We also had a couple of friends come to visit. These were the highlights of his week because he really does miss human contact. The wedding was too much. A couple people at one time instead was perfect.

I will continue to tweak my expectations as needed, and be alright with the fact that he is not the same man as he was even two years ago when we danced together at the wedding of one of my dearest friends. Our dances will have to take place in the privacy of our home in front of the fireplace with classic tunes from the 80’s playing from the stereo. “Stuck on you, got the feeling down deep in my soul that I just can’t lose…” Gotta love Lionel Richie.

Yet, I am surprised at how content I feel. I am not sure why. Nothing has really changed. When my children were young, I remember telling my mom that I was worried about the teen years with my children. She told me that the good news was that we didn’t give birth to teenagers and that the process would be slow and that we would work into “teenagehood” a little at a time. I have concluded that the Dementia process will be the same way. He didn’t get to where he is over night, and the process will be gradual. I am determined to keep a positive attitude and take one day at a time..