It's ok to do nothing

I have let this sit for 3 days because of so many reasons.  Sadness because it happened during sundowning. Angry and resentful because of what it represented. Distraught because I can't fix this just like I can't fix the circumstances I am faced with. Overwhelmed because I alone have to pick the pieces up. It was just too much at the moment.

 I don't always have to be strong and I'm perfectly ok with that. 

So I let it sit. Because it is ok not to do a darn thing sometime and I'm treating myself like a friend.  I tell myself....when you are ready you will pick it up and move on. 

And then it happened.....

I completely broke down last night. I knew it was close to happening because for the last few days I have had a hard time moving past moments that are difficult, such as this. 

With Younger Onset Alzheimer,  hard moments are a constant. Your ability to roll with it is vital to your own well being. It can be difficult at times to shake off the blows before the next one happens.  You don't get breaks from them.  It is in your face 24/7.  

My response is all I can control and I don't have to respond until I'm ready.  

Today I'm ready. I have saved this picture because it inspired me a few weeks back to create a light fixture with wood. I just didn't have the hardware. I am looking down at this shattered lamp with a different perspective this morning because now I do and that makes me happy! 

Life can be hard. I'm so glad I learned how to be my own friend.  I'm a Scorpio ....I can't imagine having myself as an enemy.  Lol. 

#WeWalkThisTogether #EarlyOnsetAlzheimer  #YoungerOnsetAlzheimer #Alzheimer #EOAD

The Green chair

I wrote this in 2017. 

The green chair. 
It sits in the corner of our small country house.. for 5 years it has sat here.because the building it’s meant to go into, is on year 8 of being worked on 

That’s a whole different story and more than likely the actual start of noticing Younger onset Alzheimer's. 
The chair sits in the same corner that occupies our Christmas tree during the month of December.  
I had made a bunch of items to sell at a craft booth and we had been loading the truck up for about 20 minuets as the sun was rising. 
I knew during the making of coffee and the repeated request for a to-go cup, the disease was paying my husband of 18 years and I a visit. He turned 56 in July and was officially diagnosed in August, 2017.

I remind myself to watch my tone and my words, because it may be the 3rd time he has asked the same question or made the same comment to me, but to him, it’s always his first.  My response has to be bigger than this disease.  Always. 
We are down to our last box to load.  This clear, plastic storage box sits on this green chair.  Filled with baskets of soaps and glass. 
I had saved a spot for this box behind the drivers seat. 
Knowing “it” was with us, I explained exactly what I needed, where it was and where it goes.

Me: “ You know the corner where the green chair is, by the Tv?
Him: No, what chair?
Me: The one we keep in the corner where we put the Christmas tree.
Him: Yes
Me: The last box is on that chair that I need and if you will get it and place it right here, behind your seat, we will be done.

He starts to walk to our pond.  I asked where he is going and he said, “ You said the Christmas Tree”.
The Christmas Tree was by the pond now that it was January. Yep.. that was the disease talking to me, not my husband. 
I redirect him and explain once more, this time, leaving the tree out and just focused on the chair. 

“ No baby, the box is not by the old Christmas tree, it’s on the green chair in the living room, by the TV.”

Mind you our house is 900 sq ft.
So the chair finally clicks and he goes into the house...

I’m adjusting the seat to be sure the box has plenty of room and turn around to see him carrying the green chair and asking where I wanted it. 

I asked what he did with the box that was on the chair.  He,starts to get frustrated with me and explains he sat it down on the ground and didn’t break anything.   He knew something was not right as he stood there holding this big green chair. The look when “it”visits was all over his handsome face.
My heart hurts and I fight back tears and do all I can to control my voice. 

I then told him, “ Patrick, the disease is visiting us right now and is thinking for you.. we don’t need the chair, we need that box.  Let’s just tell the disease to fuck off this morning and finish loading up.  Patrick doesn’t think like this, but the stupid disease does.  Don’t get mad or frustrated at yourself.. just say Fuck off to dementia. 
My husband doesn’t normally curse, I’m the foul mouth between us, which always made him roll his eyes and give me a disproving look. 

He smiled, lifted the chair over his head as he walked back to the house... saying... “ya, fuck off Alzheimers.. fuck off!

Friendship..the best medicine of all

Yesterday was my first time to run an errand without Patrick since his seizure last June. His friend Jose is visiting and stayed with him. I was so happy to get out, even if it was to sit in court with over 70 other people, all for the same ticket in a town of 300.

It had been 5 months since I ran an errand alone. I can't leave him due to seizures, amongst other things.

Did you know there is this thing called Shadowing?  Those who suffer from most forms of dementia, such as Younger-onset Alzheimer's develop it. This is when the patient keeps the caregiver in sight at all times, often within inches from them. 

They do not engage, just the opposite, they typically sit in silence, often lost within the disease, but alert enough to follow who they are focused on, just like a shadow and stare.
It can happen all day, just during a sundowning moment or not at all. It can be a few times a week or it can be everyday 24/7. As with every single thing with Younger-onset Alzheimer's or any dementia related diseases, it is random.
This can be smothering for the best of people.
Side note: Never tell a caregiver in the midst of caring for someone that one day, they will appreciate and miss the hard moments too. This may be 100% true, but I can pretty much speak on behalf of every caregiver, thev don't want to hear that as they are currently living the hardest days ever. At those moments, for me personally, I pray I forget the times I feel frustrated and I beg God to not let me remember any of the bad things as my mind clings to remember the good.

Patrick's friend lives in Colorado. He has taken a weeks vacation every year, for the last 3 years to spend with Patrick. I so appreciate that.
Something I have noticed when we have company is how much better my husband does with everything. Sundowning, temperament, coordination and speech all improve. It's not that it's not noticable, the disease forces him to still asked repeated questions within an extremely short amount of time, but as the days past, I personally noticed a difference. His mood was lighter.
I'm not his doctor, but I am his wife and fulltime caregiver, in my heart I see that depression increases the daily decline. I also notice when he is part of the conversation, he is able to verbalize his thoughts better than when he is wanting to start a conversation.  

 
Finding things for him to be involved in and intrested in while living rual has its own challenges.  His younger age,  his own stubbornness and comfort level, limit our option's. Even if there was a program closer than a 2 hour round trip, towards his age, Patrick would still refuse to go.  That part of him is definitely still there.  

I had stopped driving Patrick around for a couple of reasons this past year. After he lost his license October 2018, I would spend hours driving backroads, exploring abandoned house and visiting State Parks.
It was an extremely difficult transition for us both. The emotions were at their highest. 

 In one day, out of our control, he could no longer drive or work. Imagine as a person what that must feel like? Picture you as a man, the provider not even being able to drive anymore nor work. Having your name removed from everything you worked for. Loosing your right, in the eyes of the law to make decisions. For me, as his wife it's not that I couldn't do these things, I just did them with him for the last 20 years and having to do them on my own, he had a natural resentment towards the disease, but directed at me.  Totally natural.  Totally sucked! Still does. 
The grief and anger in Patrick would come out of nowhere. It became too dangerous to drive with him, so the drives became shorter and shorter to not at all. 

It seems to be settling more and more, so I think we can start that back again.  

This disease is not just about forgetting.
Shadowing, anger and depression are just a few things that also develop. Yes, medications are given, but it only does so much.
What I have seen. 
Seeing friends and family make a difference. Visiting those suffering is like a miracle drug for us both.

 In my personal experience with Patrick, it has become the best thing I have ever seen lift his mood. He is able to keep his mistress, Younger-onset Alzheimer's under the covers a little longer. You still see her form, but she is less visible than at other times. This makes my heart smile.

I know there will come a point when I will respect my husband's wishes and close the door to visitors.  I will preserve his dignity and honor everything we spoke about.

This disease is known as the long goodbye. 

If you know of someone suffering from it, visit while you can.  Don't put their loved ones through additional suffering by waiting until it's too late and they have to tell you no.  

It will happen.  

#WeWalkThisTogether #EarlyOnsetAlzheimer #YoungerOnsetAlzheimer #Alzheimer #EOAD 

If you would like to help give familes like ours a voice to change the laws that are needed to help us, this is a link to the crowdfunding funding video for the documentary we are raising funds to create. 

The faces in the video are just a few facing the rarest form of Alzheimer's, Early/Younger-Onset. Those diagnosed before the age of 65. There is no known cause and there is no cure. 

Please help us have a voice.
Please watch and please share this post.

https://www.gofundme.com/f/we-walk-this-together?utm_source=facebook

The importance of showing up

One of the many challenges a caregiver faces is isolation. I can't tell you how many post I read in my support group of feelings of abandonment with family and friends.
Some have questioned the world they once knew. They ask, " Were they not really my friends after all ? Are they uncomfortable around us because they don't know what to say or do? Am I too depressing to be around now? Have they stopped inviting because we rarely to never show up? "

Friends, there is truly not one single answer. It's more like a coat of many colors. Every relationship is different. The different piece, like a patchwork coat are pieces woven together to create the pattern of our lives. (Yes, I love Dolly Parton 😊)
Every friendship has it's own story and each one of us wears a coat as unique as those friendships. A coat of many colors. Your life pattern.

A while back I wrote about letting that bitterness go with those you feel have abandoned you.
I have never once felt alone in this journey, yet even when I didn't feel alone, I still felt resentment. I didn't like that feeling at all. It's what I focused on. I know for certain, that in life you get what you focus on. So why on earth was I so focused on exactly what I didn't want in my life?
For me, I was angry with a disease I had no control of and I directed that energy into more anger over a few that disappeared. Something else I had no control of. How human of me to do so. So, I did the one thing I could control.

I prayed about it and asked God to show me what I needed to see, not what I was focusing on.
I needed to see my relationships through His eyes, the eyes of love.
After I gave my problem to Him, as I was talking this through with my good friend Charla Anderson. As we spoke, these words were placed on my heart that they were not staying away, that God was keeping them away. ( that title is in my blog file on that day) . I scrambled to find paper to write out exactly what was being spoken to my heart. Thankfully Charla is use to this with me. She even gave me a new notebook for my birthday last month. 💜
That shift into a perspective allowed my emotional energy to be spent in gratitude for those that are there, not resentment for those that were not.
I completely let go, because my heart heard God loud and clear. And just WOW!!! To walk in gratitude, my footsteps were not as heavy as before and my path is clear.
I have had such an incredible amount of people from my past life step forward, as well as family support and of course the ladies that walk this with me with their own significant other in our support group.
One thing that was so beautiful that happened after I had this change in perspective, is friends I had not heard from in years, family I didn't know really cared and new friendships that developed, showed up. From early childhood to 5, 10 even 20 years ago..showed up. In one day I received 3 messages, similar to my sweet friend Terri's I'm sharing with her permission. I cried big, ugly, fat tears reading it.
The amount of compassion from my best friend, to those I had not got to see or talk to in years, showed up. I know I live rual now and almost 2000k miles away from where I grew up, message like below, for those like me, are so precious and encouraging. I get them from strangers now. It gives me the energy to move forward and continue to speak out in prayer that our journey will touch you and create awareness. I pray not matter the walk you are on that you know, compassion is not a weak emotion. It is one of the greatest gifts you can give another human and one of the greatest to receive. It carries so much postive energy, that it can recharge both the giver and the receivers soul.

Showing up is important. Even if you are far away, showing up even if it's through a message such as what I received, it makes all the difference. Nobody can do this alone. 

I can't go out to lunch or dinner with friends anymore like I use to. Finances and Patricks health make it incredibly difficult. Even if I make plans, my world is moment to moment now, so it's very, hit or miss. My best friend planned an entier birthday for Patrick in July. Everything was ready, but Patrick. We never did get to go. She was so compassionate about it, although it had to be disappointing on her end. I know it was on mine.
But friends and family still show up. They have brought lunch and dinner to us and we sit at the table and laugh. They will wash my dishes if sitting in the sink. They will send their Husband/boyfriends over to help me when I ask. And even send me a robot vacuum that completely lifted a burden off of me and this farmhouse.

Some of my childhood friends have made it a point to make sure I laugh. We even have this absolutely inappropriate and obnoxious ongoing theme thread on FB, that makes my face hurt at night when I want to cry, yet end up laughing and smiling so much.

These are just a few examples of how friends and family have found unique and simple ways to make sure I feel their love and support no matter where they are.

If you know of a caregiver, show up for them. I have had friends send little gifts or a card to lift my spirits. It so does. So much so, I actually started sending my own out last week to friends I know could use a smile.
It's not the gift, it's the effort it takes to remind someone hurting you see them and you care.

I wanted to share Terri's beautiful message to me. I met her about 8 years ago. We were neighbors. If you struggle on how to reach out to someone you know is hurting, but have not spoken to in a while.... I hope Terri's words help you. They are truly the words a caregiver, like myself needs to hear.

"Do you ever meet girlfriends for lunch or a little shopping time? I’d love to see you and give you a huge hug! I’ve been off of fb for so long—so I’d love to get you away for a slice of time to entertain me with some of your crazy country moments —laughter is so powerful!!
I realize you probably don’t leave your husband—we can take him out for a treat.
I think of you often —even more now that you have had a powerful blow that is absolutely overwhelming.
I have no agenda concerning ANY business—just reconnecting personally.

Please let me be your friend again—you are not able to be a pillar of strength without having a lot of other hands to hold YOU up! You are truly an amazing woman— you ALWAYS have been. Super smart, savvy, creative, connected—not just one step ahead of the crowd—you create the steps!!
None of us are who we were a decade ago. Life has beat the hell out of all of us —a few times! We are warriors—absolutely—but we are warriors that need a break and vacation!!!! It’s too much trouble to pretend—we are in the 100% REAL time of life.

Please text if you don’t mind. I don’t look at fb often—I forget to ! 😬
I promise not to CALL you—only if you tell me to.

BEAUTIFUL Carlene—I hope you feel the love and admiration that so many are sending your way!!"

Terri Hayes


If you would like to support familes like mine, we are raising funds to create a documentary about the road we walk. We need to create awareness for a disease so rare. Imagine being 30 and diagnosed with Alzheimer's. Imagine if you had young kids at home and a spouse. Please watch the video and please share this post.

https://www.gofundme.com/f/we-walk-this-together?utm_source=facebook

Patrick and I before our would changed. 

Terri, my beautiful friend who wrote me. 

Charla and my childhood friend Richelle celebrating my birthday with me last month

  My Best friend Jane and I. She treated me to Queen for a day at a spa. It was the first me time in 13 months.  

#WeWalkThisTogether #EarlyOnsetAlzheimer #YoungerOnsetAlzheimer #Alzheimer #EOAD #SomethingGood 

The day I wasn't prepared for

I wrote this the day reality set it. October 3, 2018.  He was no longer able to work or drive. It's been 13 months. What we later learned his his disease had progressed on to late stage and he had a seizure. Several since.  This is what happened that day. 

October 3rd, the day my husband of 18 years slipped further away. 
After the 6th call of a number I didn’t know called, I reluctantly answered my phone. 
It was a cop.
First he assure me my husband was ok.  Then he tells me he was in a minor wreck, but then asked if I knew of any medications my husband was.  I explained about the dementia medication. 
Patrick had hit someone from behind.  Instead of pulling over, he kept driving.  The person hit called it in and they pulled him over a mile and a half up the road.  The police officer said something is off on your husband. He thinks he blacked out and said he took his medication this morning and it makes him sleepy.  
He then asked if someone was close by because he did not feel like Patrick could drive.  I sent Todd and Jane Powell, Patrick’s cousin and my best friend. 
I get a call from Jane. Todd is driving Patrick’s truck behind her.  She explained that the policeman said Patrick was unable to unlock his phone, couldn’t remember their last name, and couldn’t remember Jane’s name, but that she was tall and had red hair.  She then explained that the policeman is turning Patrick over to a medical review board to have his license revoked. 
It had begun. The phase that is the final thief. Stealing my husband, robbing us of what was suppose to be.. crushing my very soul.  I could not breathe.  We are now into phase 5. 
No more of phase 4. I knew from the date of his official diagnosis August 2017, that I would have just over a year left of Patrick, the man who loved to sing karaoke with me at home and who’s favorite thing to do for vacations or on a Sunday morning, was to drive.  The man who takes the long way to get some place, because he liked to see the backroads of life. 
I have Spasmodic dysphonia so I sing for joy and therapy when I can't talk.  He stopped singing with me because he had a hard time following the words and couldn’t remember the melody, to even his favorite George Strait songs.  And now this. If he looses his license, he will lose his job and he will loose his ability to be independent.  This, I know will make the disease progresses faster. This is why, in my heart, this phase, the last phase that he has until he no longer knows me, is typically 18 months. It’s the shortest phase of the 7...shakes me to my core.  
Hours later, I was able to speak to my husband.  I kept my tone very normal, like an everyday conversation. So I asked what was up, instead of what happened?
The moment he started to speak, it was slower, I knew I was speaking to “It”, not my husband. Younger onset  Alzheimer's was talking to me. I really hate her.  

Sure enough, his account was, he was driving and a cop pulled him over, didn’t like the way he was driving, and that he thinks it’s his medication making him tired. He then said, "Now I’m here" (Todd and Jane’s).  I then explained what actually happened. I told him that he was have a dementia moment.  I told him that we are going to see his doctor and we will get things taken care of.  He was childlike in his answers. Just saying ok, very softly at each pause when I spoke. 
I told him to stay there and Todd will drive him to get clothes for the night.
In his desperate attempt to reach me, he disabled his phone after the 100th attempt. 
Jane worked to fix it, while Patrick fell asleep in a chair on their back porch. 

It was around 2:30, 5 hours since I got that call. 
Speaking to Patrick, he sounded like himself. 
I asked if he remembered what happened.  He said not really. He remembered getting coffee at a Quicktrip, but that’s really all. Kinda remembered talking to a cop and to me.   I told him about his license and the medical review board.
I could tell he was scared and I could tell he was fighting back the tears.  It’s our soul source of income. He just turned 57 in July.  The brutal reality was in his face and he was being forced to look at it head on.  Denial was no longer an option for him. He repeatedly said, “ I just don’t understand, this has never happened before”. 
I told him I loved him, we will get through this.  That we just needed to get him home and he did not have to worry, we are in this together. 
He wanted to hang up.. he got out a soft ok, but it was deafening in my heart.  He felt broken and I could actually feel his pain.  It hurt.

Grief. I cried so much my eyes and head hurt. But it didn’t match the hurt I felt for my husband. The absolute raw pain that really can’t be described.  So I cry, I talk to my friends and I write.  This disease, each new phase we enter, means the death of the other.  I’m loosing my soulmate in pieces.  7 phases of dementia = 7 painful deaths.  

#WeWalkThisTogether #EarlyOnsetAlzheimer #YoungerOnsetAlzheimer #Alzheimer #EOA #EOAD 

These pictures are from that month. So much as changed. We lost our dog Willie a few months later due to, yes another rare disease, Caine Addison's disease ( I know what are the odds) 

The Dance

A moment that took my breath away. I went into the house to find Patrick dancing to George Strait. He grabs me and he didn't miss a step! It felt like 21 years ago! My heart was so full.
I remember exactly what he was wearing and what we talked about the first time I met him and asked him to dance. The first thing I said to him on the dance floor was, "I like your Hat". He said, " Thank you, I just bought it. It's Palm so when it rains the water just rolls right off." I mean ladies.... who wouldn't fall for that? 💜
He was wearing Curve, a line I got to help launch when I worked for Liz Claiborne back in the 90's and I told him he had good taste. He laughed and said " Well I am dancing with you, so there is that".
What I don't remember is what song was playing, nor do I think I really heard it.
I felt his goodness and remember our conversation like it was yesterday.

From those first steps, we have been inseparable and walked this journey together. He still owns the shirt and hat he wore that night. Know matter how faded it got, Patrick would tell me he could never get rid of the luckiest shirt he had ever worn because he met his forever girl.
I write this with tears falling down my checks because I'm so grateful for that first dance and terrified to think, due to the absolute unpredictability of Younger-onset Alzheimer's, this could be our last. It's hard not to let my mind go there because that is the reality of the road we walk now.
Like his shirt, his memories are fading, sometimes it forces me to walk without my partner, forces me to walk for us both.
Yes, sometimes I feel like that girl line dancing by herself and I don't have a clue to the steps I should take. I don't know this dance and I don't want to dance alone.

When we got married, I truly believed it was forever. That entire grow old, die old together kinda thinking.
What I didn't know, what never entered my mind was that Early/Younger-onset Alzheimer's would sneak into our lives and steal my dances and show me that those like me that walk this journey, don't get to have those, "grow old together" opportunities. Only one of us gets those beautiful memories of that first dance while living in fear it's their last. I may not have been Patrick's first love, but I have so blessed to be his last. 

#WeWalkThisTogether  #EarlyOnsetAlzheimer #YoungerOnsetAlzheimer #Alzheimer #Alz #EOAD

Those moments that take your breath away

I was reminded of something I wrote in January after seeing a video of a sculpture by Jake Griggs, a man who has a way of capturing exactly what I feel at times. 

In this piece, she clings to her spouse that was once her rock. She hold him up for her rock is crumbling. She stand by him in sickness. 

January 2019

You know those first moments when new moments happen,  how it can literally take your breath away?  We have had so much of that lately.  This isn’t a moment of romance, it’s a moment of utter heartbreak.    The first time they cannot tell the doctor their date of birth. The first time they cannot count out their money.  The first time, instead of hours later repeating the same questions and conversations, it’s literally seconds. The first time they can no longer write.  The first time they can no longer drive.   The first time they cannot remember a family members name. 
These first time experiences are not what we planned to share as empty nesters. 
All of these first times however, have made me realize something.  It’s the first time I truly understand the depth my love is for my husband, my partner my soulmate.  It’s the first time I get to be that wife, who really walks that promise we made, in sickness and in health.  It’s the first time I’ve become the head of our household, and handled our finances. I have become fearlessly protective over a man who had always done that for me. 
My Rock is crumbling. Pieces of him are slowly falling out of place.  It will be me who picks them up and my tears will cement them into my heart forever.  One day I won’t have any more first times with this man. I’ll be sitting here and one day, for the first time I’ll say, “I kissed him for the last time”. And then my heart, heavy with the pieces I carry, will focus on all the better first times we had.. not what we are going through right now. 

#WeWalkThisTogether #EarlyOnsetAlzheimer #YoungerAlzheimer #Alzheimer #Alz #EOALZ 

I said goodbye

Today I turned 49. I am not the same person I was a year ago. Younger Alzheimer's did not just change my husband, it changed me too, and it continues to do so.  I looked in the mirror this morning and said goodbye to the girl I use to know. 

This past year I lost the role of Patrick's wife and took on a fulltime role as his caregiver. It's hard for some to understand with a disease like Alzheimers, that causes dementia, that it is completely different caregiver role for someone, say a spouse with cancer. I refer to it as a widow with a spouse still alive. 

 Yes, we may experience some of the physical challenges in caregiving, but with dementia related deaths, our loved ones become a completely different person, reverting back to childlike mindset and behavior.  They don't always know you.  This goes on for a very long time.  

The dynamics of your love changes as you do.  Every emotion you feel is elevated.  You don't have a choice in this change and there is absolutely nothing you can do to stop it. 

I'm blending these two thing I wrote to show my transition and what I was feeling, as well as how fast things can go with #YoungerAlzheimer 

The start was written April 1, 2019. I was still walking that tightrope of when to be a wife and when to be a caregiver.  Patrick had been officially diagnosed in August of 2017. He lost his ability to work or drive by October 3, 2018. 

By June 9th 2019, that transition you go through as a spouse had happened. I lost my role as a wife of almost 20 years. His mistress, Younger Alzheimer's had moved in fulltime and she was now running my house! 

4-17-19

Appreciate an argument with your spouse. Yep...I just wrote that.
When to be the caregiver and when to be the spouse is a constant balance in any marriage. There are times when your spouse needs to give more, do more and be more than you are capable of and vise versa. We have all had those moments.
Now picture this....The difference with a #Dementia related illness in a marriage is these moments happen 24/7. You never know when, where or what roll you need to be in at any given time. If you do it wrong, say are in caregiver mode, the feeling of being babied or controlled is met with negative emotions and resentment. Or say you are in spouse mode, only to find your spouse in a situation that needed you..you get the emotions of grief, sorrow, fear and even frustration.
In a healthy marriage, when you have any of these emotions, you're able to sit down, talk and work it out. With dementia you can't.  They can't reason or retain. You learn to use diversion tactics and try your best to defuse the situation.  Like any spouse, you still have moments you loose it....only with #EarlyOnsetAlzheimer it's followed by caregiver guilt. This tightrope I'm walking is mentally exhausting.  

6-9-19

The Birth of Someone New.

He got mad at me when I tried to help him finish the deck..then really mad when I just had to stop him. A man who built a two story shop, a wraparound porch, my chicken coop... did not understand that you must sink all the post in, then attach the rest, nor can he use the hole he is digging because it's not inline with the other and 3 1/2 feet too far out. Nor can he understand that that tiny piece of wood he has supporting that beam ( that should not be attached like that, will hold a person.
He just kept yelling , "How do you know".. My normal self would say something smartass, but I'm in full blown caregiver mode now. "Because of Google", I said back. And that really was the truth. I did watch videos on how to do it, because I knew this day would come.
Yep, I am no longer his wife, I am his
caregiver. That process has hurt so bad.
I had a total breakdown this past week. These last 8 months have been so painful. Like a pregnancy, I thought I had more time... so even though you try to prepare, the water breaks and there is nothing you can do stop what is about to come. A Major cry fest.
Just like with labor, it speeds up and can become more painful. I remember screaming I just can't do this while in my most intense pain...only to suddenly go numb during actually childbirth, as my childs head crowned. After that, my motherly instincts took over and I just did it, I pushed him out and nothing else mattered, but from then on out, everything changed.
That is the best way I can describe it.
I have gone from a wife to a caregiver. A part of me changed this week. A part of me died this week. I am no longer a wife. For 19 years he was the one who had the final say in all aspects of our lives, I now have that unwanted responsibility. As modern as I am, I truly enjoyed and trusted my husband to be our family leader. I never wanted to be the one to carry that burden. He did it and did it well.
Accepting this change in us both, is what I tend to refer to as "Living Greif", parts of our lives dying, while we are still living. Mourning an ever fluid loss, with so much more to come. Like a Caterpillar, BOTH becoming someone else, and nobody can stop it. Reminding myself that with #Alzheimers I cannot control what it does and I am the only one in this relationship now, that is in control of a response. Yes, I am no longer a wife, I am a caregiver, and it truly hurts. 

Today I'm a  butterfly born with a broken wing. 

#WeWalkThisTogether #EarlyOnsetAlzheimer #YoungerAlzheimer #Alzheimer #Alz #EOALZ 

A widow with a spouse still alive

I hate this feeling. I can't even describe it. Things you are forced to do like a widow, yet with a spouse still alive are gut wrenching.
It's not like I just move on once things are done, because it's in my face, 24/7. You cannot heal what is still able to cause new pain. It's relentless.
I had to transfer my husband's truck out of his name and into mine...as he is sitting in it.
He has his own emotions I also have to be strong for and help him through.  It's not easy friends.  None of this is.  I know people go through this with grandparents or parents, but this is my 58 year old husband.  #YoungerAlzheimer is brutal.
The ladies at the courthouse were so kind. They were the same ones that helped me when we sold our travel trailer and had to transfer that title over.
They even helped me figure out getting it inspected ( expired last month) and brought the paperwork out to Patrick. We had our dog Jack in the back. Jill has been returned. Its another longe story to my day, let's just say chickens were murdered at sunrise. 
The truck inspection was expired because it took 9 calls since July to my rep with Farmers to get my proof.  For whatever reason the ability to understand we don't have a Fort Worth address or my husband's work email ....was difficult. Can't get registration or inspection done without it. It came in the mail Monday along with my renewed DL that expired.
All of this is even more so important because of what happens next.

With all of that done, I now head to the pharmacy and store. It's 45 minutes away.
I go to Walmart ( saved 50% by transferring to them) and I'm out. I hate shopping so I'm that girl that can be out in 5 min. Lol. I'm also trying to beat sundowning. Emotions are high due to the truck already.  But folks, I get out like once or twice a month, so I have lots to do.
I next go to Aldi's and stock up for the next 6 weeks. 
Truck is loaded down. Patrick even has stuff between his feet.  I swear it resembles my life.

I head back, it's after 5.  He is not happy to have been out all day.  Tears have flooded my cheeks throughout.  I come to Point, Tx. It has our only store to buy hard alcohol. I stop at the 4 way, then proceed to pull in...followed by a cop with lights on.
Yep, I just want this day to be over. I wanted to buy something, get home, put everything away, cook Patrick dinner, make a stiff drink and sit in my tub.  I mean my day started with me shooting one of my own chickens suffering. 

I get out of the truck was walking around to Patrick to get my insurance.  She approached, I hand her my license  ( thank.God I just got). I explain about Patrick, my proof of insurance was in the glove box and we had too many groceries between us for me to get it and I couldn't get him to.understand to get it for me. So I excused myself and went to his door
He couldn't do the window so I opened his door...
Yep, a beer falls out and breaks.  Patrick thought that would be a perfect time to open one up while he waits for the cop to give me a ticket.  😂🤣🤔
Thankfully the cop didn't see it hear it because she was in her car running my DL. I kick it under, and hurry around to give her my insurance. 
Yes, full tears, not too sure if I now smell like it because my feet and legs are soaking wet in it. 
She gives me my ticket. Explained it was because, although I did come to a complete stop, my front tires went over the line, which is illegal.  
Yes folks, it's a short person issue driving big trucks that you're not use too ..lol. I either hit the front or have 3 feet in front of me in a parking spot.  I'll get use to it.  One day. 
I thanked her for service to the community and even hugged her.  Smelling like I did and all.  Lol why?  Because I needed on.  She is just doing her job and I'm just tired. Had not slept in days.
I then told her I was now going into Max's to buy something to forget this day.  Max, the owner of the liquor store held the door open. 
Yes, I also cried in there. 
Tears of relief for everything in order and not getting arrested for the beer.
Apparently my ticket will be $203.00, per Max. He said he sees it all day long.
I tend to wear my heart on my sleeve.  My sleeves have lots of tear stains.  I remember getting Patrick's seizure medication for the first time. I stood in the corner of the store, and just lost it. I have cried at our feed store, hardware, bank, oil change, getting new tires, taxe office ( ok lots of people have cried there.
.lol) . Y'all I live outside of a town of 1200. Our community is still new to us. I'm sure they think I'm completely unstable. 
Just lots of first moments I had to do that my husband took care of for 20 years. 
It's not the act of doing them.  Don't get me wrong.  It's not that I'm a helpless lady...
It's the reason WHY I am now the one that is doing it that fills my heart with such sadness. My grief escapes out of my eyes when I'm trying my hardest to hold them back.  #EarlyOnsetAlzheimer , that bitch, has forced me to be on my own as my husband sits next to me. It has stolen my partner and taunts me with glimpses of what we once shared.  She has forced me to let go. I do it in tears in front of the entier world.  It's who I am.  If I don't let go, it will be impossible to hang on. This road is rough, my heart is tender and my soul gets bruised with days like yesterday. 

Today is a new sunrise that I'm going to watch. I am going to appreciate that yesterday is over. No matter how hard it gets... I live here, on this beautiful Farm, in this Beautiful State of Texas in a beautiful County in our Country. I have friends and family that support us and I have a personal relationship with God to help me see that.

#ICanDoThis
#WeWalkThisTogether #EarlyOnsetAlzheimer #YoungerAlzheimer #Alzheimer #Alz #EO

Going Numb

Today I head to my stepdaughters house to meet up with the our children to celebrate my 49th birthday with them.
It's been 2 wonderful days of being pampered. It had been 8 months since I was away from Patrick, but that was to see my longest childhood friend before she died. It's the first time in 15 months it was about relaxing.
It definitely reenergized me, but it also did something else. I realized I didn't miss my husband. I didn't even open up the messages on the updates my stepdaughter was sending. It's that terrible?
I felt a huge sense of detachment. I'm being brutally honest. Numb.
I'm not sure what that's about. With such decline this last 2 years, am I in self preservation mode? Is this part of feeling like a widow with your spouse still alive? That weird grieving we experience that others can't understand, unless they walk it. I'm sure that will startle some, it did me.
I'm not sure what to feel about not feeling anything this morning.
The verbal abuse and his frustrations have been at a high. It doesn't matter that it's the disease causing this behavior, I still endure it without the ability to argue back. It's like fighting a nuclear war using sticks and stones. Am I shell shocked?

I have learned to recognize when at random moments he doesn't recognize me. Those episodes are happening more and more.
Before our trip to Florida a few months back, I had my first ever panic attack. I have had anxiety. But this was beyond that. I got sick, felt like I was having a heart attack, sweating, tears, it was terrible.
We had to leave to the airport. I wanted a hug so bad. I was crying and Patrick was so confused. I told him I just needed to be held for a moment.
In the past, I would have never even had to say a word. He would just know. He would give me the best hugs I had ever had in my life. I always told him that too. He wouldn't pull away. He would stand there, as long as I needed and hold me until I felt better. It was one of my favorite things about our marriage, about him. He knew how to comfort me.
There I was in my first panic attack and I'm having to ask him to stand up, then I placed his arms around my waist and leaned into him. He didn't do his normal squeeze. It was more of a pat on my back, then he let go. I leaned in and said, " I just need you to hug me for a long time". He did, but that natural instinct of how to comfort me was completely gone. That mistress, Younger Alzheimer's had stolen that. I threw up some more, and had to manage that moment without him.

Friday while I was experiencing my Queen for the day spa package, I was extremely aware of the human touch. If you have met me personally, you know I big on hugging. It's such a beautiful way of transferring the energy I feel for people as well as receiving it back. The human touch is so important.
Every treatment I had done, some type of massage was part of it.
It's crazy how I suddenly realized how much I miss. How a massage could remind me how much #EarlyOnsetAlzheimer has taken.

Would you all do me a favor. Would you hug your loved ones a little bit harder and a little bit longer for not just me, but for all the families suffering from this disease.

This is us on the plane about 2 hours after the panic attack.

#WeWalkThisTogether #EarlyOnsetAlzheimer #YoungerAlzheimer #Alzheimer #Alz #EOALZ 

They are not staying away, God is keeping them away.

What do you say to someone who absolutely doesn't want to leave this world, leave behind everything that is dear to their heart as they, with tears, apologize to you for dying?
I simply broke with him. I told him it is I who needs to apologize for not being the best wife he deserved.
We can't control Early onset/Younger Alzheimer's, and I am the only one who has control of how I respond. I have a chance to love him, through sickness and in health, till death do us part. I promised him I would be there ever step of the way, I would not leave his side. He was scared and I felt him break with tears . I held him and I reached for every prayer, every positive thought and every ray of light you have all sent our way and asked for every ounce of that energy be sent directly into Patrick's heart. Give him peace. Give me the words to comfort him.
I hate that out of all of the things in this world he will forget, he has not forgotten everything Younger Alzheimers has and will continue to rob him of. Today he turns 58.
Alzheimer's is known as #TheLongestGoodbye it is a curse and it is a blessing. We have a chance to say goodbye, to fix our wrongs and have no regrets, so many others do not.
Our nephew was tragically hit and killed on his motorcycle, one October night. In an instant, he and those left behind were robbed of everything, including a chance to say goodbye and look back without regret. My husband and I talked about this. We had just visited his grave a few days back.
I told Patrick that it is so sad that, in order to feel better about our situation, we are shown others and we try to think they have it worse, and want to find comfort in that...although I actually don't feel comfort at all, just more heavy in my heart if I dwell on it long enough. Like I say, the pill of perception is easily swallowed.....it's a dose of reality we tend to choke on. The reality is the life we are living.
I can't stop what is happening. I can just be there for my husband and I can boldly ask for you all, to be there for us.

I do not feel alone. This is important for anyone, especially during something so difficult as this walk to feel. But it wasn't always like this. Y'all see me break. But I get back up, pull the pieces of my heart together and carry on.

I have tried so many times to word, in my journal to share a moment that changed so much for me.
After the hospital, I saw a picture from social media. It was not so much of who was in the picture, but who was not, my husband.
I was hurt for him. That night I did not sleep a wink. I couldn't get seeing my husband the way I found him and all that I felt out of my mind, thinking I lost him. All of my imperfections and shame for having them flooded me, becauseall I felt I was not good enough for this beautiful man. All the things I wish I said, should have said or did or didn't do, ran through my heart.
He has been my other 1/2 for over 20 years. They say your life flashes before your eyes when you are about to die. I got a glimps of what it feels like to have a part of my life die, followed by the emotions of getting it back. I don't want to loose him. I can't control that. I don't want to regret anything, this I can control.
I felt so overwhelmed with what lay ahead and what was before me. I started thinking about that picture I saw, my husband not in that picture and the hurt turned to anger. My emotions were not in check. I wanted everyone to be there for him, to be there for me, but they were not. I didn't know how to stop focusing on who wasn't there for us.

So I turned to God. I needed Him to show me through His eyes.
The next morning I got a message from a friend, but it was more than that. This is her message:

Hey beautiful friend….

I so wish I would have still been there with you when you found Patrick unconscious.  What a scare!
It was such a wonderful time to be there with you.  Your ‘vision’ progressing and coming to reality is so inspiring, as is your creativity.
Thank You so much for sharing your ideas about my flight attendant persona.  I may have to have you record some of that for me…. So fun.  You are gifted, girl!     
I left my boots in the truck 😳
I forgot eggs 😢
I forgot soap 🌊
I’m enjoying the Cosby book 👍🏼

I’ve come full circle, from Emory, to Houston, to Ledbetter, to Granbury, home last night. 

So many people are asking what you need and how they can help.  Maybe make a list of everything you can think of, from prayers to building new fences…. Throw it out there.  I wish I had helped you more, with cleaning the workshop or something.  We had fun just chillin’ on the porch, but I would be happy to get my hands dirty and use some muscles.  I’m stronger than I look, lol.

I love you.  I’m grateful for you. I’m here for you.
Smiles, Charla 🤠

Now, don't get me wrong. Friends and some of our family have offered to help and have (see pictures), but remember that picture I was angry about. What I fouced on. Suddenly my heart shifted.
What I was shown in my heart was that in my mind, they were staying away from us and it made me angry, But remember the pill of perception versus a dose of reality, Through Love He showed me the reality.

They are NOT staying away, He is Keeping them away!
I was not being hurt, I WAS being helped.

In an instant I saw the faces of every Friend and family member who have reached out and yes, I even felt the love of those who silently think of us with nothing but love, who have not said a word, but keep us in their hearts. ( yes I felt you 💜). I was gifted with the true understanding and gratitude, that,

It's about the people that are there for you, not about the ones you wish were.

What a burden to lay at the foot of this mountain and be able to use it as a stepping stone.

Caring for my husband hasn't made me stronger. It has made me wiser. The mountain I am climbing will take a lot of tools to reach the top. It will take friends, family, prayers and encouragement.
As I look up, I see nothing but hands, ready to reach out and pull us up, not because our circumstances have changed, nor those that have disappointed me, but because God has given me the heart to see it through His eyes, to see those that are there, not those that are not.

#WeWalkThisTogether and I will forever be grateful for those that think of us and are there for us, Holding my hand, helping, praying and sending nothing but love and light.

Carlene

#EarlyOnsetYoungAlzheimers
#EarlyOnsetAlzheimer #YoungerAlzheimer #Alzheimer #Alz

Patrick and his cousins who came out to help finish this for us. The pier that has sat unfinished for the last year.

The Pill of Perception

A wife has posted on my support page that she wishes this was over, but feels like a horrible person for wanting that. I was asked to write about my thoughts on this. This is what I shared.

Wanting this to be over shows mercy and a deep understanding of this disease, something most will never understand, unless they walk this. It is not lack of compassion, it is a dose of reality regardless of what emotions played into that decision.
A few years ago I made a meme about some words that came to my heart and wanted to share them. " The pill of perception is easily swallowed, but it is a dose of reality we tend to choke on!". Those whom have been diagnosed and those that are their caregivers, are living the reality, not the preception of this disease. We choke so hard on reality, that tears tend to be a permanent fixture on our face.

There comes a point when some really hard choices must be made. Medications, supplements and diet restrictions for example. When you are living the really of #EarlyOnsetAlzheimer or any disease with no cure, and you see your loved one continue to decline, and you know that not one person has survived since 1906, ( first case of Early onset) you are forced to put down the "Pill of Perception" and swallow a dose of reality.
Those of us whom have stopped all of the medications except for antidepressants and anxiety, did so because nobody wants to prolong this suffering. It is done out of love, yes, even if the decision is made during times of frustration and extreme stress. Nobody, faced with ANY TERMINAL disease, especially one that currently has no cure, should never, ever feel like they are a horrible person, because they don't want to prolong the suffering of someone they love, under these circumstances.
I have been recomend, by well many friends, family and strangers, to have my husband do and take all sorts of supplements and avoid eating certain things or add an abundance of others.

The bottomline is this... Someone with a disease that has no known cure, not a single drug that has proven to slow it down ( since every case is 100% different and regardless, still has a 100% death rate) and has the most horrific and inhuman, prolonged death... deserves to eat and drink anything they want and say no to something that may or may not prolong their suffering.
I had a woman who insisted that my husband's disease was caused by fungus and wanted him to eat cabbage, onions and large amounts of garlic. When I explained that fungus may be linked to certain dementia cases, it has nothing to do with Early-onset... she actually answered back, "So what, you don't want to get your husband well?". I answered her back, " Untill there is a cure, I cannot cure my husband, but I can make sure he is no longer suffering from the terrible side effects of prescription drugs and he is not restricted to what he wants to eat or drink in his remaining days. "
If you have come to this point in this disease, and just want this to be over, do not feel shame, do not feel guilt. Having a deep understanding of your personal situation has brought you and you loved one to this decision, nothing more and nothing less.
If someone shames you, don't be angry with them, educate them. If you are dealing with someone that is unable to understand reality, tell them what we say in the South... " Bless your heart" and move on. #WeWalkThisTogether and the reality of some folks, you just need to leave behind.

We Walk This Together

Monday I experienced, the emotions of actually believing my husband had died in front of me. As I ran into the house to search for my cell phone, running back out as I fumbled to dial 911, in my mind, Patrick was gone. As I tried to remain calm I was talking to first responders answering questions and holding my husband's face, looking into his eyes, not seeing him, see me. It was a feeling I just can't describe. There is not a word, it's not even every word in every language that has ever been spoken, it is that indescribable.
I got a glimps of what it felt like to lose my husband. So much flashed before me.

I was transferred to 911 operators, which I did not realize when I call 911, it goes local to our volunteer first responders, which is great, because they got there first.
So I start my conversation over but this time,Patrick starts making sounds. He is yellow/greenish, sweating profusely and gurgling, still eyes open, not blinking nor responding to me.
I thought he was having a heart attack.  Patrick had complained a few hours before hand that he felt shorteness of breath. He came out to where I was doing yard work and said he just didn't feel right. He had also been sick the night before.
Then the feeling of the most horrific helplessness came over me. There was absolutely nothing I could physically do to make this stop, I prayed but praying did not take away the feeling of helplessness I was experiencing, now thinking, OH My God he is alive and he is dying in front of me and I can't stop this! I felt those emotions.

As terrible and terrifying as it was to experience the real emotions, not the pill of perception but a dose of reality, that pain has purpose.
This experience has been a gift.
My experience with this has given me a deeper understanding, one that cannot be understood by perception, but by only those whom have walked it. With this understanding, my heart will be provied the words others may need. With this experience, I have a deeper understanding of my own emotions, because my heart will be somewhat familiar with the feelings, one can't describe.
Nobody can control what happens in life, we can only control our response to it.
#EarlyOnsetAlzheimer is in control of our lives, it decides what is next but it lacks the power to control how I respond! I can't fight #Alzheimers but I can use it to be a better wife, caregiver, mother, daughter, sister and friend. I can use it to make a difference. It will not make me bitter, it will make me better. 

#WeWalkThisTogether
#EOA
#YoungerAlzheimer