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.”
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!
I’ve been told my whole life not to look back: learn from the past, make a plan, and move forward. I do that by planning things to look forward to.
So what do I look forward to?
I look forward to weekends, snow days, and vacations. There is nothing I love more than being home. No alarm needs to be set. There are no plans. Most of the time, I just sit with my favorite man- doing schoolwork, balancing the checkbook, filling shopping carts that I never submit, and watching lengthy TV series with multiple episodes. Yet, it is where I am happiest.
This week I had a spontaneous snow day. My guy was having a rough morning. His mood often matches the weather, and it was overcast, snowing hard, cold, and blowing. We weren’t plowed out, and the 2-hour Delay wasn’t long enough to get us cleaned out, so I stayed home.
A bad day means lots of staring, word finding challenges, and slow reaction time. He gets cold, but instead of asking for a blanket, he just crosses his arms tightly across his chest. A loose grip around his coffee cup means that when it is removed, his hand stays in the gripped position. A return kiss on the lips is delayed no matter how many times it is attempted. He can’t answer basic questions, give eye contact, or tell me what he needs. He doesn’t even rock in his chair. He stares and doesn’t blink.
If I can make a bad day better just by sitting with him, then I am happy.
The good news is that most days are fine. As long as his world is predictable, quiet, and with little stimulation, he has good days. He is his best when he sleeps in, naps in the afternoon, snuggles with his favorite redhead, and has alone time after everyone goes to bed. He loves projects and misses the sun this time of year. He still reads political books, plays Words With Friends, watches the Justice Channel, and enjoys a good TV Series. He still cooks, cleans, and shovels snow. These things make him happy.
My happiness is directly proportional to his.
There was once a day when I looked forward to far more, but today I’d give anything to never leave his side.
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.
The 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.
Older, Wiser Me.
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:
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
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. That 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.
At 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.
Speaking 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.
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.
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.