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