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TomC0917 · July 27

I know I'm not the Lone Ranger when it comes to facing the challenges of caring for a LO with this disease. The level of pain to see my DW struggle with tasks that 2 years ago were done without a second thought are hard to verbalize or put down on paper.

As I watch her struggle, any attempt to help is quickly and curtly dismissed. For now, she can still do those things but it takes much longer to do. Six months? One year? Will she be able to do those things. I fight not to think that far out. I'm still learning how to deal with today.

I see so many people posting about their lives with a LO suffering with this disease. There's comfort to know that I'm not in this by myself, but to read how this progresses is soul crushing.

I'll keep coming back get what strength I can from you and lean on your knowledge and experience. Thank you.

blacksparky · July 27

I’m so sorry that you have had to join this group. There is so much good advice that you will get as you follow. Here’s 3 things that I did after my DW’s diagnoses of EOAD.

1- get all your paperwork done early like Trusts, POA’s, banking and any legal paperwork that would require your LO to sign.

2- if you have a bucket list of things you two have planned go ahead and do as many as possible before she can’t do them any longer.

3- and most importantly don’t look back or forward. Take one day at a time and make the best of it.
We are all here for you friend…..

dcare45 · July 27

Welcome here. I am glad you found this site and sorry you have the need to.

I had learned to wait in the wings in case DW needed help with anything. If I saw frustration or failure coming, I would step out and ask Oh do you mind if I help? or I was trying to do that earlier let's figure it out. Giving direction or just doing a task without her input usually didn't end well. It's a real learning curve to see what approach works best with your LO especially if they are in the early stages. It is difficult.

The pain on of this is so very real. Putting it down on paper and verbalizing it seemed to help me. It's good you found this site. Come here to vent, ask advice, give advice. You are one of us now. Welcome

Lethe · July 28

Welcome to the club none of us wanted to be in. This is a great group of people for sure. I’ve often wondered the same thing… and wish I knew the time line. I asked my DH today if he would like me to help him with dressing (and choosing what to wear). He said “no everything just takes me longer, maybe when I can’t button my shirts.” It’s the daily sad losses that hit my heart hard. Not knowing what day it is so not taking his pills (I didn’t know what day it was so didn’t know which pills to take). Going outside today in a fleece jacket to pick tomatoes and it’s 89 degrees. He never noticed. For me I just try to find some joy in every day. He’s still here and I hope he feels my love. I have to hold onto that.

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