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