We Walk This Together: A Journey Through Early Onset Alzheimer's Disease: 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.