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