Talked to Differently After Diagnosis

By ALZsurvivorearlyonset

1 min read

Last updated: August 2023

The people I have been close to want so badly to make my diagnosis go away. They say things like, “Oh, I forget things all the time. It’s part of aging.”

My memory loss is not like yours

I was diagnosed in 2022 at 68 years old. I traveled internationally on disaster teams as a nurse. What I tell them is my loss of memory is not like that. That thought is GONE.

I’m not upset with them, but just this week, I experienced my first episode of agitation. I was shocked at my behavior. I’ve never thrown things before. I was doing it, screaming and crying. I thought I was just grieving my diagnosis. Now I understand better. Now I have tools. I’ll be kinder to myself.

This is my story.

Help others feel a little less alone.

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Lynn Marie Witt, MSOT
<inline-mention username="ALZsurvivorearlyonset" user-id="7035660"/> thank you for sharing your story and your experiences. It is not easy to do, but your vulnerability will help many in our community. I am glad that you have the tools you need and are being more gentle to yourself. Sending a virtual hug your way. Just Keep Swimming...Lynn Marie, "Alzheimersdisease.net Team Member"
1. Scott Matheny Moderator
 <inline-mention username="ALZsurvivorearlyonset" user-id="7035660"/> Please keep us updated on how you are doing and more photos of your bike riding adventures. Scott <a href='http://AlzheimersDisease.net' target='_blank'>AlzheimersDisease.net</a> Team Member
2. Lynn Marie Witt, MSOT
 <inline-mention username="ALZsurvivorearlyonset" user-id="7035660"/> you are very welcome! Just checking in on you to see how you are doing. You have been on my mind. Just Keep Swimming...Lynn Marie, "AlzheimersDisease.net Team Member"
DonnaFA Community Admin
<inline-mention username="ALZsurvivorearlyonset" user-id="7035660"/> , thank you so much for sharing your story. Your generosity is so helpful to the community. And the reminder is so important, please do continue to be kind and gentle with yourself, and thank you for reminding us to do the same. -Warmly, Donna (team member)
1. ALZsurvivorearlyonset Member
 Thank you Donna!
Scott Matheny Moderator
I read this again and wanted to ask you something. What is the best way for someone to respond to you when you feel agitation? What helps you? Scott <a href='http://AlzheimersDisease.net' target='_blank'>AlzheimersDisease.net</a> Team member
1. ALZsurvivorearlyonset Member
 Probably just a calm approach. A hug. An acknowledgment that this sucks.
bbrim38710 Member
Sadly, I have been treated differently too. I get it, my husband sometimes acts like I have 2 heads at times. I have noticed my patience(which was always commented on by others), is not there any longer. I have got so mad and a little voice is saying just stop, but I can’t. Afterwards I always try to apologize and I have even tried to suggest ideas to maybe help keep me from going off. We are all here for you, you are not alone. Becky
1. ALZsurvivorearlyonset Member
 I think when I’m tired, I need to turn on some gentle music to calm me. I’ve found riding my bike again has been helping too.
2. ALZsurvivorearlyonset Member
 Thank you Becky.
Kathy Matheny Moderator
Thank you for sharing. It's amazing that you can recognize what is happening within yourself. What ideas do you have for others to help you avoid a melt down? And yes, don't be hard on yourself. That kind of stress seldom does what you hope it will. It makes it worse. Blessings, Kathy M team member.
1. ALZsurvivorearlyonset Member
 I listen to more music to calm myself. I also ride my E bike daily. I’m going to start painting, which I think may also be calming. I have very little artistic talent, but it doesn’t matter.
Kathy Matheny Moderator
I know we want people to feel better and downplay what they are going through or compare it to our own experience to show it's not unusual. But as you pointed out, it doesn't make you feel better. Instead, it marginalizes how you feel. It's not nothing, but it's not the end of the world, either. Maybe acknowledgement and loyalty is a better response. Blessing, Kathy M team member.
ALZsurvivorearlyonset Member
I’m newly diagnosed, so it has stopped my world as I knew it. That feels pretty bad.
1. Kathy Matheny Moderator
 I'm so sorry. I know your world is upside down. I am so glad you found us. I hope your family and friends rally around you and you feel their love and support. That's what I meant by loyalty. That they pledge their loyalty to you to stick by you through thick and thin. We are here for you, too. Blessings, kathy M team member.

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