1. < Loss & Grief

Loss of My Life, My Future Because of Alzheimer’s.

Posted by SusanEllen66 @SusanEllen66, Aug 26 10:14am

I’m finally realizing that my brain is not functioning properly and that I’m losing touch. I guess I have not really thought much about me, until I saw a video of other’s. They were also Alzheimer’s patients and upon hearing them express their feelings and crying through it I cried watching them.
For me it really hit home.
I’m grieving for my loss of me. I don’t want to disappear slowly causing so much suffering for me m and my family.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Aug 26 1:26pm

@SusanEllen66 I think we come to a realization of how our lives change with a long term or chronic health condition. We look back at how we used to live life, or thoughts of what we had planned but are not able to accomplish now. It can't help but sadden us.

I have been there, and had to decide to make the best of what the deck of cards has dealt me. Reach out to your family, and enlist their help and support. Likewise to your medical team. Go to the Alzheimers Association website alz.org for tips and support. Don't be afraid to be vulnerable.
Ginger

REPLY
SusanEllen66 | @SusanEllen66 | Aug 31 6:16pm

@gingerw thank you.
Denial. The game we’re playing right now is hide it under the carpet and maybe it’ll go away. That’s my family not me. I acknowledge my disease every time I meet somebody and they need to know I do however my family that’s too much they are still looking at me like really are you kidding me? You’re fine. I feel like I have to prove to them that I am really sick. It’s frustrating.

My biggest problem right now is Ataxia. That is causing me more problems than anything else. I cannot walk without a walker and my balance is so bad that if I don’t have the walker, I crash into the walls. I just had to get eyeglasses for the double vision. It’s just not a pleasant disease either so both of them mixed together. Gives me quite a job every day to stay sane.

Ah, but my sanity remains in place when I place my troubles into the hands of Jesus Christ. He is the rock on which I stand. He will neither leave nor forsake me. I am blessed.

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Sep 1 10:48am
In reply to @SusanEllen66 "@gingerw thank you. Denial. The game we’re playing right now is hide it under the carpet..." + (show)
@SusanEllen66

@gingerw thank you.
Denial. The game we’re playing right now is hide it under the carpet and maybe it’ll go away. That’s my family not me. I acknowledge my disease every time I meet somebody and they need to know I do however my family that’s too much they are still looking at me like really are you kidding me? You’re fine. I feel like I have to prove to them that I am really sick. It’s frustrating.

My biggest problem right now is Ataxia. That is causing me more problems than anything else. I cannot walk without a walker and my balance is so bad that if I don’t have the walker, I crash into the walls. I just had to get eyeglasses for the double vision. It’s just not a pleasant disease either so both of them mixed together. Gives me quite a job every day to stay sane.

Ah, but my sanity remains in place when I place my troubles into the hands of Jesus Christ. He is the rock on which I stand. He will neither leave nor forsake me. I am blessed.

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@SusanEllen66 We cannot control how family and friends will see a situation. For them, it may be a reminder of how they could also be. It may be they don't know how to support you, or may not hear you when you offer up tips to help you. Remember, their lives change too, with your diagnosis.

Can you check with your medical team, and ask how they can help you with the ataxia issue? There may be some correlation and parallels they can address.
Ginger

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