This Group is my Lifeline - Thanks!

LJCHR

I continue to go to this site numerous times a day - the empathy and experience of the participants here is the best support I have found. I am in a place now where a lot of you have found yourself in - I'm alone in this horrible ambiguous grief cycle called Alzheimer's.

Bill posted "The Calvary is not Coming" and I read this over and over. He posted this below:

After reading this, take a deep breath, and say “I am on my own, and I am doing the best that I can.” I really hope this makes you feel better. This is a horrible situation to be in, and sometimes realizing that you are on your own is just what you need to hear. 

I think I have reached the point of realizing I am on my own......and it hurts to the core.

The kids want to know how Papa is doing. You tell them and they don't want to hear it. I'm exhausted from hearing "You have to focus on the good days". Who among us caretakers don't focus and live for the good days. I also hear "Papa looks like he's doing fine". My response to that wants to be walk in my shoes each day. After 3+ years of this, I am ready to just be on my own and not bother any of the kids with how Papa really is. They really don't want to know.

This discussion forum is probably the lifeline for a great number of us. Thank you for being here and understanding what it's "REALLY" like to live our nightmares.

Prayers to all of us.

sandwichone123

LJCHR, I hear you! I finally decided that, for my own sanity, I needed to reframe people's thoughtless and sometimes stupid comments. I decided that, "he looks fine to me," means that I'm doing a great job of caring for him and he looks good. I also do not tell anyone how he's doing except, "fine, fine," unless they have shown that they really do want to know. I don't give updates to anyone who is out of touch with his/our reality--just "fine, fine." We really are largely on our own, and any person you can talk with about your reality is a gift--give thanks for them!

emlentonpa

> @LJCHR said:
> I continue to go to this site numerous times a day - the empathy and experience of the participants here is the best support I have found. I am in a place now where a lot of you have found yourself in - I'm alone in this horrible ambiguous grief cycle called Alzheimer's.
> Bill posted "The Calvary is not Coming" and I read this over and over. He posted this below:
> After reading this, take a deep breath, and say “I am on my own, and I am doing the best that I can.” I really hope this makes you feel better. This is a horrible situation to be in, and sometimes realizing that you are on your own is just what you need to hear. 
> I think I have reached the point of realizing I am on my own......and it hurts to the core.
> The kids want to know how Papa is doing. You tell them and they don't want to hear it. I'm exhausted from hearing "You have to focus on the good days". Who among us caretakers don't focus and live for the good days. I also hear "Papa looks like he's doing fine". My response to that wants to be walk in my shoes each day. After 3+ years of this, I am ready to just be on my own and not bother any of the kids with how Papa really is. They really don't want to know.
> This discussion forum is probably the lifeline for a great number of us. Thank you for being here and understanding what it's "REALLY" like to live our nightmares.
> Prayers to all of us.

> @LJCHR said:
> I continue to go to this site numerous times a day - the empathy and experience of the participants here is the best support I have found. I am in a place now where a lot of you have found yourself in - I'm alone in this horrible ambiguous grief cycle called Alzheimer's.
> Bill posted "The Calvary is not Coming" and I read this over and over. He posted this below:
> After reading this, take a deep breath, and say “I am on my own, and I am doing the best that I can.” I really hope this makes you feel better. This is a horrible situation to be in, and sometimes realizing that you are on your own is just what you need to hear. 
> I think I have reached the point of realizing I am on my own......and it hurts to the core.
> The kids want to know how Papa is doing. You tell them and they don't want to hear it. I'm exhausted from hearing "You have to focus on the good days". Who among us caretakers don't focus and live for the good days. I also hear "Papa looks like he's doing fine". My response to that wants to be walk in my shoes each day. After 3+ years of this, I am ready to just be on my own and not bother any of the kids with how Papa really is. They really don't want to know.
> This discussion forum is probably the lifeline for a great number of us. Thank you for being here and understanding what it's "REALLY" like to live our nightmares.
> Prayers to all of us.

I know just how you feel.
This morning my increasingly irrational (and beloved husband) said he wanted to discuss ‘numbers’. I was pleased, hoping that perhaps we’d have a real conversation. This was a conversation he was starting , not a unilateral and escalating disagreement. After a few moments he began to postulate on complicated biblical theory — we are not religious people and in our decades together we have had no theological discussions. He became very aggressive and began a sort of interrogation of me. He is a retired university professor and lecturer r who was suddenly spouting absolutely irrational stuff. I suggested that we change the subject; but there was no subject that I suggested that he didn’t challenge. How did I know? What was the basis or ‘agenda’ of my topic.
We live in a rural and isolated area where there are few resources and we can no longer drive due to age related macular degeneration.
We have no family members or friends who can help. We employ a twice a week household helper who helps us keep up our large house and grounds.
My husband’s neurologist has prescribed a combination of drugs to combat his Parkinson’s disease and his increasing dementia.
He is subject to night terrors that cause extreme posturing and thrashing.
I have no one in whom to confide and I am at the end of my rope.
Today’s ‘interrogation’ was more terrifying than I can bear - his relentless pursuit of totally irrational concepts leaves me in absolute desolation.
I cannot escape, I am legally blind, barely able to get about because of arthritis and now I am being filibustered by an unrecognizable madman….

dazdintx

https://alzconnected.org/discussion/comment/203246#Comment_203246

You need to get out of your situation. It's time for you to move to assisted living and to get away from "DH". Get a lawyer and contact a real estate agent to sell the property. Time to put on your oxygen mask and save yourself. Actually, your post is helpful to me, because if I am not careful, your present is my future. Love yourself and take action. Call one of the help lines and ask for help. Call your doctor and tell him you need help. Call a women's shelter and ask for help. Call your local hospital and ask to speak to the social worker. Someone is out there that will help you. Hang on.

brs

Oh my goodness, I'm very sorry this happened to you. Sometimes it's difficult no matter what we do, keep quiet thinking they'll stop and engaging in the nonsense, only to have things escalate. I hope ways for you to find peace come to you; sitting outside for brief periods, listening to audio books or perhaps podcasts for mindfulness.

LJCHR

https://alzconnected.org/discussion/comment/203240#Comment_203240

Thank you for your feedback. This disease has such a stigma - unlike cancer, etc.

Every time I get the responses as mentioned above, I second guess myself (I would love to be wrong but unfortunately I’m not).