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