Today's Blog is about what was sort of a revelation to me - I finally figured out the meaning of living "one day at a time" with an Alzheimer spouse. I invite you to go to the home page - www.thealzheimerspouse.com - , read the Blog, and post comments here.
Joan, your blog today hits a cord with each of us who cares for a person living with alzheimers. its brings to mind the song by Christy Lane and Kris Kristoferson, 'One Day At A Time, Sweet Jesus'..it should be the anthem for alzheimers in my opinion. i think the words are so appropriate esp for us here who endure the cruel hardships of AD sufferers. Once we accept the idea of just living for today, and focus on that, it makes it all more manageable, no yesterday no tomorrow. living in the 'now' and letting all else go makes alot of sense since our LO doesnt remember 5min ago much less what happened yesterday. now if "WE" can just learn to let it go and go with the flow..i know easier said than done. divvi
I keep a copy of the Serenity Prayer nearby. "God grant ,e the SERENITYto accept the things I cannot change, COURAGEto change the things I can and the WISDOM To know the difference.....
Joan, I have to say, I entirely understand your feelings. Where did all these arguments come from? We never had them before. So now I tippy toe around the house to avoid having a conversation with him. I've built a cocoon of sorts. I've wrapped myself up in a safe place, which is no communication except the grocery list, comments about the cat, what she does or doesn't like to eat, small simple everyday conversation you would have with a stranger on the street. I really don't feel married anymore. He wants to have sex, but I have been sleeping on the sofa for a year, since he put the house on the market & I went into my meltdown. He thinks it's been 3 months, but not, so why have it if he can't remember. He is totally unaffectionate, so you that have affection, appreciate it. I could really relate to your last two Blogs. I could have written them.
You all had no idea what was coming. I am absolutely furious with the medical professions who could have forewarned me. I have done the research on the effects of whole brain irradiation, and certainly one out of how many doctors could have taken me aside & told me what I might expect. We could have made plans. I could have had his cooperation at that point. I could have stayed on top of our finances. I was literally in the dark. Sushyne, you know how you clued me in.
It is really tough day after day to be someone other than yourself. I am a natural communicator, and really like to resolve difficulties & move past them. There is no moving past this. That's the frustration, I have the ability to resolve conflicts, he is in another world.
And as I move forward to what I don't know, I have stopped telling my friends stories about my husband. It has all been explained here. Thank God for this site, because really, I would probably be out of my mind right now, and maybe I am.
Joan-Really we live in two worlds and need to remember which is which. You are right if you just take it one day at a time a try to forget the hurt from the previous day as he has, that works. But the rest of the world is on a different time zone where one must juggle and maintain life. The trick for me is to try and blend his perception of reality with reality and get it all to work together. The worst part for me is to know this is as good as it will be and it is just down hill from here. That is so depressing. I get so frustrated with what is happening and then I remember that it will only get worse.
My DH went through a phase where he was calling himself stupid. This was very upsetting to both of us in different ways. He got so frustrated and angry with himself when he couldn't remember what he did with the keys, his wallet, etc. One day I looked at him and said "this is part of the disease, so keep calm and we will get through this together". That worked. So after that I just always referred to us as a team going through the process together and working it out together.
He was funny with his denial. He did not see himself as anything different than he had always been but he knew that he relied on me a lot just to get through the day. When he couldn't figure something out, I was the first person that he hollared for. There were many days where I got 10-15 calls with questions from him many times, it was the same question.
As difficult as they were, they really were "the good old days". At least then, there were many moments of normal conversation and good times just being together.
When my DH was alive, I thought "he" was living with AD, but when he died my son and I realized that "we" were living with AD, my DH was dying with AD. Each change in his memory meant he was one step closer to death. I wish I could have kept that focus at the time, but somehow I think I thought we were all going to have a lot of time together, but that things were just going to be different. I guess that was denial, but we thought it was reality.
Opinion request...is it right to discuss his illness with him as far as stages and what is happening? I have been relating some of the milder incidents from this forum to him, and this morning he asked if maybe we should ask his neurologist if he should talk about it. This tells me he is somewhat aware of things ahead, and perhaps doesn't want to discuss them. I don't know.
We are having his older brother and his wife visit us for a couple of days, and they haven't seen him for over 6 months so it will be interesting to see what they notice.
My DH wanted me to tell him what was going on even when he was in denial so, I always told him what was happening. Even now when we are no longer sure how much he understands, I tell him what is going to happen. I have noticed that the aids do that with him to and it seems to help.
IMO it depends on the person with the disease how much you tell them. Unfortunately, it is somewhat of a trial and error type of thing, it may be the right thing to discuss everything with them now, however six months down the road it could be totally different. I did ask the doctor about this one time and was told, I know him best and when in doubt, I should go with my gut feeling.
If he is asking questions, then he wants some kind of answer but watch his reaction. He may be asking one thing but really want the answer to something totally different.
My DH has been insistent about finding something to help him with this disease. He wakes up every day and wants to know when we're going to the doctor. I know he is scared of what is happening and doesn't even realize the enormity of it. I can't tell him that there is no medicine that will make him better; I just try to reassure him that he's taking the medicine they want him to take and they're working on a cure. I think that deep down he knows the truth having seen his brother die of AD, but is desperately trying to fight his way out. It is so painful to see his distress and confusion. Today he couldn't find his way around the kitchen counter to get to the other side.
Its been a few months since I have visited here. I don't know whether to call it too busy or depression or trying to run from all of the truths here. But in any case, Joan, your blog today hits home. And one day at a time, sweet Jesus and the serenity prayer that too. But I only last hours not a day and I am bk to big time smothering in frustration. I guess this is not one of my good days SORRY but my LO now asks me often if I ever had children (We have two ) and now speaking of me to me as I am someone else..He is still on driving his truck which he hasnt in 5 mths (keys were lost when he had surgery) Now his drivers license is due and he has to go to be tested cause Dr said no driving and ins co wont insure him. All this I have to tell him daily to postpone him. I am tired. But I know you guys have it much worst and I am sorry for this pity party. Still thanking Joan for this site, I have learned a bunch from everyone here and been comforted alot by it.
This blog is wonderful!!!!!!!!!!!!!!!!! I could read it every morning. It would be like a pep talk to get me started. I like it all but the part that was the biggest eye opener for me was living his one day at a time and not mine and the fact that they don't even remember what happened yesterday and that is so true because I will be steamin over something that happened and he is just totally and inicently oblivious of it. I want him to care about the fact that I am stewing! That actually sounds ridiculus now.