Monday, May 6, 2019 ~ What If….

“What if” questions tumble through our minds our whole lives. From the time we are old enough to be told, “Don’t touch that pan! It’s Hot!”, our inquisitive minds promote the hand movement that will invariably desire to touch the hot pot. “What if I touch it?” In our latter years, the complexity of the answer changes, but the simplicity of the “What if” question remains. What if I choose a Lincoln instead of a Cadillac? What if I go with a two story home this time? What if I take that job? What if I retire?

The ‘What Ifs” are beginning to overwhelm me and yet, they can all be encapsulated with one very simple question: “What If this life I Hold in my hands is not the life I imagined 50 years ago? 30 years ago? 10 years ago? 1 short year ago? I imagined an amazing retirement with romantic moments on a sunset beach. Maybe a beach-front cottage for leisurely summer evenings and family vacations. Maybe a cabin on a gorgeous lake in the mountains for hot summer days or when we wanted to get away in the winter. I could imagine being snowed in with a roaring fire to cuddle up with my love and roast marshmallows for s’mores.

My imagined retirement with my amazing husband.

Those dreams are long gone now. The changes have come in rapid-fire succession like an M134 Minigun going off. I can’t catch a breath between the changes. I don’t even have time to twitch before another round is going off, piercing through the fog to the heart of the matter.

I am adjusting. I am finding my balance. I am sometimes going dark, hoping nothing else hits me. Other times, it duck-and-cover as the bullets of life whiz by much to close for comfort. Always thinking. Always planning my next move. I have no choice but to try to stay ahead of the game. I am on the verge of losing everything and am desperately seeking solutions to everything else. This is no way to live. I must find the answers, no matter how complex, no matter how frightening, I must find a place of shelter from the shooter in order to preserve what I still have in my hands. I have to have a plan in place before the kill-shot.

The shooter? Early-onset Alzheimer’s. The bullets are taking out brain cells every day. Sometimes I can dodge a bullet. I think I have forgotten something, but then suddenly it comes to me. I try to take a deep cleansing breath but sadly, there’s another bullet and it hits it’s target landing point blank in my memory and takes out several more cells.

I have notes I read every morning. I have a note now on the table when I wake up in the morning to remind me to read all my notes before attempting to begin my day. I have important things written down. Like letting my dog, JoyBelle out to potty. I remind myself to watch her the whole time so I don’t forget to bring her back inside. Notes on how I make my gallon of sweet tea every few days. I forgot that recipe for a moment so I estimated yesterday. When it came back to me, I quickly took notes. I have notes about my husband and children. What they do for a living, etc. I add to them every time I learn a new piece of info on them. This morning, I had to add my beloved hubby and the fact that he is seeing a cardiologist today. I did not know he had heart trouble and I thought he was keeping secrets from me. He dried my tears and assured me he is fine. I will not put one more ounce of stress on him if I can avoid it at all.

My iPhone notes.

Early-onset or Younger-onset Alzheimer’s begins before the age of 65. That is why it is classified as such. The stages are somewhat varying but the first thing that goes is your short term memory. I do not remember convos unless I takes notes on who said what. Even then I still draw a blank sometimes. This usually happens for me within a couple of days. By a week out, I’m blank about even having a convo with that person. I have bits and pieces of visits, dinners out, fun times, but if it’s recent, it is going to elude me very quickly. I take a lot of pics and post them on fb to help me remember the happy times and important events. Even if they are only important to me.

I cannot remember doc appt’s or even the momentous upcoming events without my calendar or Alexa reminding me constantly about them. I lose the names that go with the faces of folks I have met in the last year. If I am friends with them on fb it helps, but sometimes I can see them in my minds-eye on fb, but cannot put the name with the face. I know this probably hurts the person’s feelings but I certainly do not mean or intend to forget them.

As more brain cells die off, it affects more memories and begins to encroach on longer term. I forget to change clothes. I forget to do my hair. I forget what I am supposed to wear. I forget we are going to church. I forget to put on my seatbelt and even where to find it in the car. My hubby has to get out and come around to help me when the seat belt bell tolls in our ride. I have forgotten how to make my coffee, how to work the microwave, and wonder why I have clothing patterns in a bin or why I would ever need a sewing machine.

I will eventually forget my precious family’s names, then their sweet faces. I will forget their likes and dislikes and how to best please them. This is the toughest part of the process for me. I cannot bear this idea in the least. My family is the heart of who I am, so how can this possibly be happening to me? I have lived for them.

I will eventually forget how to eat, drink and breathe. That is what will take my life. I will cease to exist because my memory will no longer exist. Small sections of my memory continue to die out until there is nothing left of me or for me. I am under a tremendous amount of self-inflicted stress and tension concerning what is coming at me with lightening speed. E-o A progresses much more quickly than regular, if you can call it that, Alzheimer’s. With E-o A, a good prognosis is 5-7 years. Since most folks have it for about 2 1/2 years before diagnosis, you can do the math. I think I am special and will have more time. 🙂

Nothing changes the fact that within just a couple more years, I will need full-time, 24-7 health care assistance. This cost is exorbitant. For in-home care 24/7, the cost would range anywhere from $9,000 for the cheapest health care assistant per month, to $21,000 for the best per month. Guess I should have become a home care assistant years ago. Patients with Alzheimer’s cost almost $2,000 more on the month at an assisted living facility but still only comes in at about 9 grand per month. Ain’t nobody got money for any of it, but if you have to choose the lesser cost and burden on your family in time, energy and monetary issues. nursing facility is def the way to go.

Since my current stress reducer involves my future care, I am making those plans now. I am letting my family know what I want them to do with me. That these are my wishes and choices and that responsibility lays with me. I used to believe the worst possible choice would be to go into a facility. My mother put my Grammy in one when she had dementia. My mother put my father in one when he had dementia. My sister’s brother-in-law was kept in his home and a lot of the responsibility for his care fell on her shoulders and I watched her health deteriorate in the process. My father-in-law passed recently with dementia and Parkinson’s and I saw what the family went through with him staying in his home throughout and what it has been like since he passed.

These are not choices my family will have to make. I will not ask nor will I allow them to keep me in-home. I know what this disease does to the person hosting it and to the folks hosting the Alzheimer’s host. It is a vortex of pain and emotion and there is no walking away. You can step away, but the disease marches on to it’s own cell-death knoll. Eventually, you’ll have to come back to even more devastating changes. I refuse to allow my husband or my children to bathe me and change me. It steals the dignity of all involved. I cannot, will not entertain that thought for a nano second. So as E-o A noshes away, I am putting my choices into action.

I have talked to two of my family members so far. The first one seemed fine with my choices. The second pretty much tore a strip off my hide. The tears and the words came fast and furious and it broke my heart, but not my resolution. I have two more to tell, but I need a little more time to compose myself again and do for them what they will not do for themselves. I don’t think they read these blogs and if they do, I pray they will still hear me out.

Sometimes, the purest love has to just let go. You release the bird you have been holding and caring for and it will soar to the farthest reaches it can and make it’s own way in the world. If you continue to hold onto it, when it was created to fly, it will die. You can try to domesticate a bird, keep it in a cage, and it may live longer, but it’s natural instinct to fly is still present and if you open that cage, that bird is going to fly and try to get to the open air. Short of clipping their wings, they are always going to struggle to fly.

As humans, we still have the innate sense of freedom, that urge to travel, explore, meet new people, try new things, soar on the currents life offers us. While I can no longer experience that freedom, I will not clip the wings of those I love to keep them tethered to home and hearth. The day may come when I will not know if they kept my wishes or not, but I am certainly praying that they will. I want them to lead beautiful, fulfilled lives. I want them to stretch as far as humanly possible and snatch every dream into reality. I want them to soar, to build, to experience. My children have a lot of living yet to do, and so does my husband.

When I was first diagnosed, I read many stories about the families and caregivers of Alzheimer’s patients. My impression of them was judgmental and cruel to say the least. As my mind fails me, I realize the best choice to be made is the best for all involved. It will never be goodbye. It will be “Take Care”, and “See ya soon”. There are things none of us want to experience, but learn to live through. There are things we never want to know, but do. And there is a love so deep, the only honorable thing to do is to set it free. Until that day comes, I will still enjoy time with my family and more time with my family. While I can still make memories that are good and healthy, I must still try to make them last.

And I thank God for every single one of them!
Posted in Alzheimer's, Finding Your Way, Grief Living, Knowing Jesus | Tagged , , , , , | Leave a comment

Tuesday, February 19, 2019: FOREVER NEW

My Loves, I know all these changes are hard on you

And I need to share some things, just a few,

To help you traverse this path we’re on

Which never ceases from dawn to dawn.

When I can’t find the word I need to speak,

Breathe in slowly and then, let me be free

To search through the fog and continually hope

Even when it’s wrong, you’ll know what I spoke.

When you can’t find the ladle for my soup recipe?

You can smile when you discover it’s in the deep-freeze.

Please don’t frown or be too upset with silly me.

I might have been planning on a big bowl of ice cream.

Trash in the washer, radishes in a drawer, I know,

These are not normal, but there will be much more.

Please smile and make a joke, for it’s what I do

As part of the now normal, although still new.

While I may forget where things truly belong,

And words that I need, or the lyrics to a song,

I will never forget the love for you that I feel,

A love so deep it makes my head and heart reel.

You snatch my breath with your sweet smile,

Always have and always will, all the while,

I’m thinking my heart will not possibly hold

All the love I feel when your arms gently enfold.

The little things surely will slip from my grasp

And continue to drift while your hand I clasp.

But please stay close and don’t ever let me go

As my heart will speak when the words I don’t know.

If I don’t know your name? I’ll still know your heart,

For it’s part of mine and has been from the start.

So love me, hold me and let’s laugh without break

As laughter will cover many mistakes I will make.

When I am filled with fear or looking for one

Who has passed on from here to the great beyond,

While it is confusing for you it will be more so for me

When I cannot process where they might be.

Patience will be a requirement as time goes by,

Moments of clarity, fleeting, without reason or rhyme

Will be my always not the in-betweens and few.

So breathe deeply and remember I fiercely love you.

And please remember and don’t ever forget,

Though my mind is slipping your smile will be met

With a sigh from my heart when the words will not form

And a love that won’t die living in this new norm.

Alzheimer’s may steal my mind from us all,

But God will keep my heart firm with HIS call

As HE knows it only belongs to HIM and to you,

And HE will keep this love I have for you ~ Forever New.

Posted in Alzheimer's, Finding Your Way, Grief Living, Knowing Jesus, Poetry | Leave a comment

Wednesday ~ May 1, 2019: Emoticon of Decorum

I spent a large block of time on the phone with my Seeser this morning. She and I have always been very close. We call ourselves the nine-apart twins. We look and act like twins but are nine years, nine months, and nine days apart in the birthing order of our siblings.  We feel each other although miles separate us. I can sense when something is amiss with her and vice versa. She traveled out here the day after I received the diagnosis of Early-onset Alzheimer’s without knowing anything about the appointment. We just know. She was with me as my hubby and I told our children and she and her husband were a much needed strength and support to all of us.

So this morning, we talked about all the E-oA changes going on and she asked what it has been like for me to see, experience, feel, what is going on in my brain. I had never been asked that question. I have shared from time to time about the frustration, anger, sadness, but not putting needed words or pictures to those feelings and experiences. Let me first give you a snapshot, thumbnail so to speak, of the woman I was a few years ago.

My mother seemed to all to be the Perfect Minister’s Wife. She truly was the proper noun all the time. So, when I married, much to everyone’s surprise, a minister, I had a very high bar set before me. I wore my hair in the perfect do. I made or purchased perfect attire. I knew when to wear heels or flats, and when to carry a handbag or a clutch. I kept my home spotless, 24/7. Everything had a place and was always in its place! I could hold delightful conversations, set an elegant table and orchestrate a 7 course meal including an aperitif, appetizer, salad, main course, dessert, and delightful cup of coffee! I could not function otherwise. I sang perfectly, sat perfectly, never, ever hurried, and knew how to pose for perfect pictures when needed. I hand~wrote invitations, thank you notes and introduced folks in perfect order.

I never shared anyone’s business with another, and still do not! I knew how to be polite and never ask rude questions. I knew how to respond perfectly if someone asked me a rude question. Laugh gently and say, “My dear, I will forgive you for asking if you forgive me for not answering”, and laugh gently again. I knew when to leave before outstaying my welcome and to sweetly end an evening in my home so others didn’t feel rushed or pushed aside. I knew how to make up a welcoming, comfortable guest room to make a home-away-from-home for our visitors.

I could plan and execute huge fund-raising dinners for the church and create an entertaining dining experience for anyone who purchased a ticket. Church Banquets? Just tell me how many and I could come up with the theme, menu, skits, whatever the heart desired. Perfect every single time. I knew which utensils to use when dining out, to chew with my mouth closed, never speak with food in my mouth, to keep the napkin in my lap until finished with dinner and then fold it and lay it across my plate when done, to keep elbows off the table and tip generously.

I raised three children who practiced their manners, respected the elders in their lives, and knew their Bibles well. They picked up after themselves, dressed appropriately and gave and give the most heart-warming hugs. They are to this day truly amazing adults. I am completely blessed by them and they are my joys!

Ann Landers, Dear Abby, American Etiquette and Rules of Politeness, and Emily Post could have used me as their poster person for proper etiquette.  I was the emoticon of decorum. The hands in lovely white lace gloves would have been the picture of my life.

Emoticon of Decorum ~ My Before E-oA picture

But then, Early-onset Alzheimer’s paid me a visit one day and refused to leave. No amount of rules learned over the years could help me. It was never going to excuse itself for the mess it made, pay for the damages it had done or depart my body. It was the most chaotic guest and I could not throw it out! It was never going to leave. Ever. So what to do now?

After much research and my day to day issues, we knew my short term memories were fading fast. If I have a convo today and do not take notes immediately after, I will only be able to give you a basic sketch tomorrow and by next week, I may not remember that we even talked about something. I think my husband is buying me a new Keurig Coffee Maker every day, but no. They took pictures of each step and wrote instructions on the pictures so I can make my coffee in the morning.

Alexa tells me when to take my meds. Five minutes later my phone and watch tell me to take my meds. A little after that my hubby texts to see if I took my meds. I think I have but when someone drops by and checks? Meds still in the container. I now have a flying saucer on my island that yells at me and doesn’t stop squeaking, beeping, vibrating, lighting up until I take that dose of medicine. She is so annoying, I doubt I miss another dose. I am thankful that God has given me family who watch over me and keep me secure and safe.

I never have to answer the doorbell or open the door. I don’t have the filter to alert me when it might be someone I do not know and therefore should not allow them in my house. My husband gets an alert on his phone, no matter where he is, when someone comes to my door, can see on the video who it is, unlock the door for them, and tell them to come on in the house. He can also activate the alarm that notifies the police if someone should ever try to come in that we don’t know. Thank God for technology.

I am losing more memory every single day. Some days, it is a lot and some days, it is bits here and there. While talking to my Seeser I realized a few things, but the most important is how I now manage my time. Things like cleaning and cooking and being neat and orderly have no place in my life now. I have kind of become a fly by the seat of my pants gal. If it doesn’t get done? Who cares? Me? Nada. I sincerely could not care less if I actually tried!

I wear what I like. I do my hair how I like. I love sparkle. Always have. But in the Before E-oA, I would not have chosen to be liberal with those sparkles. Now? The more the better! I like them and enjoy wearing them. I love the kaleidoscope of color that bursts from their brilliance when the light catches and reflects just right. Sparkles make me happy! Color makes me happy. No more subdued earth tones for me. Well, unless it’s some type of animal print!

So pretty much everything about me has changed. My personality is changing. I think what is fun more than what is proper. I think what can I not do today rather than what should I be doing today. I want lots of hugs and I don’t care if I get mussed or if my hat hits the ground. If someone knocks a drink over on my wood table? Who cares? Not me. I have paper towels, furniture oil, carpet cleaner. I’ll point the way and they can clean up the mess. I reckon I am in Sweet Brown mode: Ain’t nobody got time for that!

I choose to focus on making the moments count for something. I want to make my mark. I want to make an impression that will not be forgotten and cannot be erased with my memories. I hate this disease. I hate that I have it in my brain. But unless God see fit to remove it, it ain’t going anywhere. I can accept that. I don’t have to like it, I will never embrace it, but I will learn to live with it and the limitations it brings. Thank God, HE’s with me every day!

Emoticon of A Rebel ~ My After E-oA picture

I’m fairly certain I have become a rebel. I say what I think. I do what I want when I want. But everything I do now, post E-oA, is all with one goal in mind. To spend every moment on something that matters in the future. If writing my life out helps someone along their journey, I’m writing. I know spending quality time with my family counts, and I am completely greedy about that one. More, more, more time, please. Come here. Let’s do dinner. Let’s have a picnic. Let’s go to the lake. Let’s do something, anything together. Prayer time, Bible time, Family time. I crave it like the oxygen my lungs need. I really don’t care about anything else. I promise you, I do not!! If you are my friend, you are included under family time. So if you want to stop by for a visit, come on! My hubby will let you come in. LOL My house might be dirty, I may be in my jammies or I may be dressed to the nines, but I would love a hug!

That is the answer to the question! That is how I feel about the changes going on in my brain. They suck but my life does not!

Posted in Alzheimer's, Grief Living, Knowing Jesus | 2 Comments

Monday ~ April 22, 2019: Courage to Face My Fear

Many folks interpret courage as being fearless like the Lion, King of the Jungle, and all it surveys. The lion is not courageous. It is born to be a top predator. Other animals are born to fear the lion. It is simply doing what it was created to do and existing as it was born to exist ~ on top!

Courage is not always about standing up and roaring in the face of life issues. Courage is the ability to say, “This terrifies me but I will not run!” Sometimes, courage is displayed through a whisper. A soft whisper, couched in a strength they may not know they even possess. Sometimes, women in particular, will stand and roar to prove they are strong. They may feel inadequate to compete, compared to their male counterparts, so they don this, ‘I’m better than you, stronger than you, and will do it better than you‘ attitude. And they may very well be able to do so. But I find this an unattractive quality for me, personally. It would never look good on me. I enjoy the softer side of the female within. Not all women do and I certainly understand. I also have had, and enjoyed, my own strengths, talents, but I love being able to lean on my husband. I turn to him for his opinion in everything. I consult with him on scriptures, prayer, budgets, menus, clothing, home decor, etc. Most of the time, he tells me to do whatever I like. He trusts my opinion and I trust his. This was not easy in the beginning as I had lived on my own and did what I wanted, when I wanted. But when I became ONE with my husband? It needed to change that ‘my way‘ mentality to ‘our way‘. It has been our way for over forty-two years.

And now…. While I am still married and head over heels in love with my husband? I am alone. Alzheimer’s is an isolating disease. No one tells you this fact. Mostly because there is basically nothing out there for the Alzheimer’s patient. Oh there’s plenty of info on the symptoms, what it does to your brain, what docs ‘cannot’ do for you yet, and then comes this massive leap straight to caregivers. I live every day, giving more and more details of my daily life into the hands of someone else. At least once or twice a week, I discover something else I can no longer do. But there is nowhere to turn, to find others like me, who can say, ‘yes, that happened to me a couple of weeks ago‘, or at least I can’t find them.

Even facebook groups which state they are formed for me, the Early-onset Alzheimer’s patient, end up being mostly caregivers posting. It is horribly depressing with many of them being hurt and bitter over being caregivers to a parent or spouse. I certainly appreciate they have the hardest job in the world but I am not ready to face that part of what’s ahead, yet. It feels as though I went from being a vital part of humanity to well, nothing. I instantly went from top RBI hitter in the game to just being third base. From greatest outfielder to just being the outfield. I told my son I went from contributing to being the millstone around the necks of those I love the most.

All the things I used to do? Gone. Singing. Teaching in a Christian School. Actively Homeschooling my children without use of computers. Teaching all ages in Sunday School. Teaching Young Married seminars. Teaching women how to be strong while embracing their femininity. Formulating new recipes. Sewing. Crocheting. Redesigning rooms in our home. Novelist of two books. Full-time Grammy. Writing poetry. And always FIGHTING for a cause! Now, retired from everything by force of Alzheimer’s. One thing sort of remains. That one thing is Homeschooling my grandson, Tristan. The sort of part is because I am just supervising his time. When he actually need help academically now, I must defer to others.

One recent incident stands tall still in my short-term memory. Last weekend, my hubs went to Ohio to spend a day with his father whose time on this earth is drawing to a close. Tim has traveled with his jobs over the years, and I dealt with those times. Neither of us sleeps much when we are apart, but I always filled my time doing things I enjoyed. Shopping, bubble baths, shopping, reading, writing, shopping, cooking, etc. I managed to fill the days with activity while waiting on his next phone call. This time was a far cry from those days. I was virtually paralyzed with fear. His one day away was extended to nearly four days due to flight delays and cancellations, no fault of his. I kept asking the Lord to at least give him one moment with his father that he could treasure so it would make this trip worth the pain and anxiety I suffered. God did honor that request exceptionally well, but I can still taste the fear when I think about those days. I cried for hours at a time. At one point, I realized my 14 year old grandson was kneeling beside me with his arm around me and his head on my shoulder. He should never have had to do that for me. I am supposed to be his comfort, his strength. I did not sleep the entire time Tim was gone.

Alzheimer’s changes everything. I was afraid I would forget something important about Tim while we were apart. And I did. Every night when he comes in from work, I have a cold drink prepared for him. I know what he likes. He always calls when he is leaving work to let me know he’s on his way. I wait about fifteen minutes, and then prepare his beverage. When he got back home after that weekend, I could not and cannot remember if he prefers crushed ice or cubes. This was something I knew. I know that I knew, but can no longer know what I knew. I still make his favorite drink after work but rotate between ice styles in hopes he will not notice.

There is nowhere to turn to find out if my new normal is new or normal to others, who are in my space in the disease, who have recently experienced this, or to let those behind me know what is coming. These changes that snatch away in a heartbeat who you are, who you have been and whom you will no longer see and know. I am forever changed, one day at a time. One lost memory at a time. It is a prison I will never escape.

In the still of the night, I promise myself, I will do better tomorrow. But it’s a losing game. No one will ever bet on me winning. The odds are getting higher every day as now one of the biggest pharma company has pulled completely out of research for a cure or a medicine that will work for me. They have decided it is hopeless. A cure is most likely never going to happen in my lifetime.

So, it comes down to wondering if I have anything left at all to contribute. Is there anyone like me who has found something we can still do, with the brain cells we still have left? Where are the people like me? Surely, I am not as alone as I feel. My family loves me and offers support constantly, but I know they really don’t understand. I see it in their eyes when I do something I shouldn’t do. I hear it in their voice when they try to respond to my lack of understanding or when I have forgotten something I should have remembered. I see it in their actions when they fix something I messed up. I tell them I’m sorry and they tell me to stop apologizing. But, it’s all I have ~ I’m sorry. I love them with all my heart and hate what this is doing to all of us.

Courage. Courage is trying to do something when the odds are stacked against you. Courage is not about doing something when the odds are in your favor. I need to find the courage to do something, anything, to be helpful, to contribute. So far? Nothing. I need people like me and I can’t find them. What do they do? Who do they talk to? Or have they just given up since their diagnosis? Are they just the outfield instead of playing the game?

God, please give me courage to find something to do that is good and productive. I feel so lost and alone here in this world.

Posted in Alzheimer's, Finding Your Way, Grief Living, Uncategorized | 4 Comments

Wednesday ~ April 10, 2019: Hanging Up The Gloves

Fighters live to fight. Every single day, they are working out, stepping into the ring, practicing their best moves against the unexpected, and constantly on guard. “Fighter” is not just a title. It’s a way of life.

I was just four years old when I knew I was in my first fight. Someone told my dad I did something. He took their word over mine and delivered the first spanking I remember. He made me lay down on the bed and struck me repeatedly with his belt. He told me to stop screaming and I shoved my fist into my mouth and bit down to hold back the screams. I sobbed well into the night. I remember thinking in that moment that I would never win. At the age of four. Sadly, it’s one of my first memories of my father.

I adopted that philosophy for several years. “I will never win!” Sometimes, he would come in from work, slam his lunch box on the counter and order me to my room. I did not know what I had done, but I knew what was coming. Maybe someone made him angry at work, maybe some road rage on the way home. Didn’t matter. I became the whipping child, out of 6 siblings at the time. For a couple of years, these intense bouts continued until I became aware that what he was enjoying was breaking me and making me cry. When I cried, I sobbed for a long time afterwards. I determined at 6 years of age, he could not have my tears anymore. It caused more rage in him and the spankings took on a new ferocity, but I clamped my jaws so tight I thought my teeth would crack, chewed the inside of my cheek, whatever I could do to distract myself from the immediacy of the attack.

He then turned to more cruel measures and took perverse pleasure in punishing me in the most horrific and frightening scenarios. It took it’s toll, but I was in the fight of my life and most of the time it felt like I was fighting for my life. When I was twelve years old, I required hip surgery. Part of the recovery process was to be in a body cast for 6 months. I remember Dr. Kingsbury looking at my mother and saying, “I am not going to put Karla in a body cast. I think she has a fighting spirit in her that will help her heal. I also believe if I put her in a body cast, it will break her.” Thank God, Dr. Kingsbury saw me! My father apologized to me a few years ago before he passed and we made peace. I realize now what I went through as a child helped me stand in the face of all the health issues that were to come.

I have fought every day of my life since I was four and possibly before that. I fought through abuse, I fought through rape, I fought through being crushed by our church family which shut down our ministry for twenty-five years, I fought through cancer three times, I fought through both knee joints, both hip joints and one shoulder being replaced in 3 years, I fight through fibromyalgia, I fight through mixed connective tissue disorder, I fight through COPD, and now I fight Alzeimer’s.

Until, now.

Now, I must retire and hang up the gloves. The fight is over. The final bout has been called. My doctor told me yesterday, that I am losing instead of winning. I cannot stand the thought of losing. It goes against everything I stand for in my heart and mind and body. Yet, his reasoning made sense. He echoed something my daughter told me on Saturday and it had been reverberating in my head without acceptance.

I am losing large blocks of time. Sometimes, just for a couple hours. Sometimes, several hours from one day into several hours from the next day. He told me this is caused by trying to force my brain to do tasks it simply can no longer access. Stressing the brain beyond it’s capabilities. Things like figuring with numbers, working with recipes, anything that takes mental acuity and planning. I try to accomplish a task over and over and over without success. It is frustrating because I know that I know how to do this one thing, yet cannot. Due to the overload, my brain flees the area. He said I need to step out of the ring and turn it over to those who love and support me, the younger versions, who can step into the ring and go toe-to-toe on my behalf.

So, now it becomes a question of how does a fighter retire? You know the old adage, ‘you can lead a horse to water, but you can’t make him drink’? Yeah. I’m there. I heard them, I took copious notes after the doctor visit yesterday, but I do not know how to step out of the ring. The fight that has saved me for years is now causing me to decline faster. The fight that used to do me so much good is now harming me. When my mind is forced to fight, it goes into flight mode. This causes my cognitive skills to go into steep decline causing more cell damage at a faster rate. I have to give priority to my loves and my memories. I have to stop in my tracks and figure out how to live out of the ring.

A Fighter always knows it’s time to retire when they begin to lose more bouts then they win. Their managers ask them to retire and then their fans join the chant. They want their prize fighter to retire with dignity before being forced out in shame. They love their fighter. They have spent years, money, and time cheering them on to victory time and time again. The Fighter’s self worth, their sense of purpose, comes from every aspect of the fight. The excitement of stepping into the ring, the pride of winning round after round, the rope-a-dope that went viral, the applause, the self-satisfaction. It is so fulfilling it becomes addictive. The “Fighter” eats, breathes, and lives to fight.

I cannot and quite possibly don’t even know how to go about giving up the fight. Lord, I need YOUR strength. I need YOUR wisdom! I have thrived because of the fight. I do not wish to just survive, to just exist. Show me how to thrive without fighting every moment, every step, every day! Please!!!

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Tuesday ~ February 19, 2019: My New Normal

The greatest Neuro-Scientist, Mathematician, Tech Genius, Architect, Linguist, Database Administrator, Engineer, Cytologist, Physicist, and Artist came in the form of one Being. God! When HE created our brain, HE proved that fact. The intricacies and beauty of this creation simply overwhelm me today.

My doctor gave me a few websites and told me to read them first thing every morning. It would help keep me aware and updated each day as to what is going on in my brain. I am very aware, almost hyper-aware and that is a great advantage to have in my thought pocket. Each cell in the brain contributes to your overall thought process and your abilities, skills and function capabilities. Every cell is connected in how they play so well together.

Through different events in life cellular damage can occur. One of the leading damaged cells issues is Dementia. Dementia is an umbrella term for brain cell death caused by many factors. Parkinson’s and Huntington’s can cause dementia. Strokes, tumors, head injuries can also cause dementia. Vitamin deficiencies, medication reactions, and the natural aging process can all contribute to this often misunderstood and misdiagnosed problem with the brain.

A fair portion of those listed above are not dementia-severe. The dementia may come and go and can even be reversed in some cases. While dementia is sad and can destroy lives, much of the time there is hope. One of the diseases under this umbrella of Dementia is Alzheimer’s. Not Old-Timers, not Alltimer’s. Alzheimer’s. It is a progressive disease with no cure, no coming back, no stopping. Just constant, steady changes and death in the brain cells that affect important abilities for day-to-day life. It began for me a few years ago, but I had no idea this is what was happening to me.

I would think I had told someone something only to find out I had not. I would have days where concentrating was not just hard, it was impossible. My words began to slip from me. I would use them in error of their entire meaning. Not just adding a syllable here and there or a prefix or suffix that did not belong. An entire word used in the wrong way. I could not think of the right word. It was as though it never existed in my mind although I knew something was wrong with what I said. Folks would supply me with words in effort to be helpful and it made me angry. I was not angry at them. They were trying to be helpful. I was angry with me because it highlighted the problem happening with my brain. It reinforced the fact I had a problem.

I began misplacing things. Important things. Needful things. Beautiful things. Things I loved. Sometimes, I would come across them in strange places, sometimes I had false memories of doing something with a particular item and sometimes I have never found them again. Case in point? My 2K diamond stud earrings. Gone with no idea where. This makes me sad and angry at me.

One day I decided to just be comfy and wear my favorite shirt and sweats. I pulled out the sweats and turned to look for the shirt. I searched through the entire walk-in closet, the hamper, my dresser drawers, and the washer and dryer. The only shirts I owned were hanging in my closet. So where was that shirt? I decided to just look at all the shirts in the same color in case I had just overlooked it. So I started to look for all the …… I couldn’t remember the color. Style? Nope. I knew I owned that shirt but to this day cannot tell you what color, style or even whether it’s cotton or silk or whatever. It’s gone.

The frightening part for me is knowing it existed but having no other recall. I don’t think it’s missing which really scares me. I think perhaps I am wearing it right now but no longer recognize it as the favorite shirt that I love and fall back into when I want a comfy day. It’s the pieces that I know are missing that bring the fear and sadness. I know it is a process and that it will continue to happen and that I cannot stop it. For a few days this week, I have struggled with the microwave. I know what it is. I know what it does, but I can’t make it do the one thing I know it can do for me. Cook something fast. Then I begin to wonder when the day will arrive that I don’t know how to work the stove….

I know all the Biblical references for fear. I know all about trusting Jesus and having faith that HE will get us through this, but the unknowns and the whens and the what-ifs are plaguing my days and my nights. I eventually can get settled and go back into just git ‘er done mode. But the struggle is real and worsening almost daily. It is frightening.

It is not only frightening for me on my own behalf, I am even more worried for my family. I am putting everything I can into making sure the days ahead for them will be as easy as I can make them. I am getting my affairs in order, so to speak, while I still know what those affairs are and making sure they know my wishes so there will be no question what to do when the time comes. It is one of the hardest things I have ever done, but these are not decisions that I ever want my husband or my children to have to make. I will have as much in place as I possibly can in hopes that it will lessen the load a bit for them.

I know the road ahead will be harder for them than for me. I know their hearts will break on a daily basis as I know mine is doing now and surely would do if God forbid, the situation was reversed. So if I can find the strength and will to do what I can for them now? You best believe I am sure-fire going to git ‘er done!

All of that does not change what a beautiful creation this brain of mine is. It is a maze of millions of neurons all communicating with each other and with the rest of your body. If you see an image of the brain in working form, it is a thing of beauty and breathtaking to watch it work. I have watched several videos and MRI image presentations in order to grasp and understand this is my brain on Alzheimer’s while I can do so. Different areas of the brain allow us to function as a whole. Alzheimer’s eventually affects pretty much every area. It kills the neurons which prohibits their ability to communicate. One after another, they die and cease to function. Memory, thinking, judgment, language, problem-solving, personality and movement can all be affected by the disease. I am experiencing changes in every single one of these now. My memory is cloudy, thinking is iffy, language (my love for words) is slipping right through my fingers, problem-solving now takes two of us, personality is changing subtly as this point (hopefully I am the only one noticing), movement is hampered by missteps, falls and dropping things.

While the greatest Neuro-Scientist, Mathematician, Tech Genius, Architect, Linguist, Database Administrator, Engineer, Cytologist, Physicist, and Artist created this mind, HE is not responsible for what is currently happening within the confines of my skull. The fall of man, the choices made, have caused this disease. I have not and will not blame God. HE is the ONE I depend on to get me through and the ONE who will see my family through. God did not do this to me! I fully believe HE allowed it to come my way. But HE did not cause it!

So why would the greatest Neuro-Scientist, Mathematician, Tech Genius, Architect, Linguist, Database Administrator, Engineer, Cytologist, Physicist, and Artist allow such a thing to come my way? I believe it is because HE trusts me to trust HIM. Maybe I flatter myself with that belief, but God knows that no matter what I go through, I look to HIM and give HIM the praise and glory for every day He grants me and thank HIM when the day is done.

I don’t know the end game and that’s probably a good thang! My husband keeps gently guiding me with one day at a time advice, and while I try hard to adhere to that, the what-ifs still slip through.

I pray this snapshot helps you to understand what Alzeimer’s is doing and maybe you can help someone else who is suffering with this disease that so very little is known or understood,

 

 

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Monday ~ April 1, 2019: HIT THE BRAKES!

Have you ever been doing about 80 mph on one of our Texas highways, legally on some stretches of road, and suddenly, you have to bring your vehicle to a standstill? I don’t drive anymore, but as a passenger? I slam both feet to the floorboard, hit the front of the dash with my palms and push with all the strength I have. I reckon I’m trying to help the driver avoid the accident in front of us. It’s instinct. You hit the brakes whether your driving or not. You have to stop the ride to prevent what might have happened.

Yesterday was one of those days when I felt something horrible coming. I was hitting the brakes with everything I had, but not stopping. Then it was happening. I was still hitting the brakes, but could not stop it, and that’s all I remember of the first half of the day.  It was the absolute worst moments, hours, I have experienced so far. I want to share it with you, if that’s okay. If this journey can help one other person feel less alone, or help one person understand what someone they love is going through, then to God be the glory for giving me a voice.

We were having a Family and Friends day at church yesterday. After church, we were having a carry-in (potluck) dinner. I cannot do recipes anymore. The measurements confuse me and the ingredients get all messed up in my head and it turns out a disastrous, inedible dish. I love to cook and experiment with new dishes so this has been a great loss to me. I new whatever I prepared for the potluck would have to be super simple and something I new pretty much without thinking. I decided on cocktail bbq meatballs and deviled eggs. It felt like spring-time picnic food and in my mind at the time? Easy peasy.

The bbq sauce took some work to get it right, and 3 attempts on deviled eggs. I was frustrated and felt confusion all around me. I started fighting for me, to maintain focus and create a decent dish or two. I remember showing my hubby which dishes to put in the car, getting to our church, and then….

Throughout the evening before and that morning, I could feel things shifting, changing, but could not describe, could not get the words to explain. That’s when I first knew something was happening but didn’t know what to do or how to react. On the way to church, I kept trying to stop it, but couldn’t speak the words, or ask for help. By the time we took our seats, I was beginning to lose sensation, thoughts, recognition, until everything was fading into total chaos in my mind. I had tried to hit the brakes to slow my ride but nothing happened. I was in the midst of a terrible crash and the my world, as I know it, was completely out of my control. I remember the taste of fear, the smell of fear, the feel of fear and that’s all. It was as if everything I knew was gone. I was alone. That was all I could experience.

At some point, I knew I was sitting at a table with my granddaughter and realized my Pastor was sitting across from me and he was talking to me. I knew him, I knew his voice, I knew I trusted him, and slowly, I returned to the me I know. My husband came with a plate of food and we sat and talked and laughed and all was well.

I am assuming the Alheimer’s snatched me for a few hours. I had been told this would happen. I though it would be like taking a nap. I thought it would feel like a dream, or that I would not know it was happening at all. But I knew it was coming, I knew it was happening and no mater how hard I pushed back, I could not stop it.

Last night after our kids and grands left to go to their homes, I sat in my husband’s arms and sobbed. I was afraid I had embarrassed him because on the inside I was running and screaming and fighting. He said he didn’t think anyone else would have known what was happening but my family. He assured me I had held it together on the outside. He talked to me about his love for me and how nothing can or will ever change that love. It was sweet and perfect and reassuring. I don’t want this thing. I don’t want it for him or my kids and grands. I want to live out our retirement years together, loving and living every moment. All I could think is what I don’t want and what I do want.

During the night, God reminded of the story of the blind man in the Bible. Everyone assumed either he or his parents must have sinned because he was blind. Jesus told them the man was blind because God was about to get some glory.

I begin to think about yesterday in a different light. God had helped me fix my dishes for the potluck. HE had helped me keep it together through the service. HE sent me Pastor to me just to talk and sit with me which gave me peace. He got me home and back to my place of safety. He sent me children to make a beautiful homemade dinner and they brought the most beautiful birthday cake I have ever seen. Then to close out my day, he settled me in the loving arms of my beloved to soothe my heart and finish the day. God did all of that because HE loves me and knows I will give HIM the glory.

I think the realness of it all is sinking in and I know that I know, Jesus is with me.

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