I wrote this to share with both Caregivers AND the person with dementia because it gives a little of both sides.

The biggest heart break as well as frustration with this disease is knowing that you cannot remember and no matter how hard you try it is as if your mind has been erased. I know without a shadow of a doubt there are times that my husband and I discuss something and it is for the very first time. He will remind me that we had already talked about that issue many times over and I know within my heart that he is wrong. Sometimes it feels like someone is actually trying to drive me insane. I think to myself, "Why is he doing this to me?" "Why won't he listen?" It becomes so painful that I resort to hidden tears because I have been strong for so long that I am not about to show my weakness now. Though I know at times he sees it and he tries to comfort me, there is no comfort in knowing that your memory has been taken from you and someone is playing these mean and terrible jokes on you as that is how it appears. I actually pray for the day that I will without a doubt no longer remember because then all of the questions of not knowing and the pain will also be erased from my already deteriorating mind. I also feel the pain of my family having to struggle with the issues of slowly watching me on the journey of this Long Good-bye. At this time time I know that their pain will not be erased but hopefully comforted in knowing that I no longer know what is before me. My husband tries to keep my mind active in making me think and still do as much as I can on my own but my reasoning and perception is now quickly leaving. For those that are just now facing this journey just know that it is not all bad and for that, that is bad you won't remember but your life will still go on as you have much yet to accomplish. You are embarking upon a journey full of many paths yet to cross, many stories to share and many lives to change. Embrace your life as if it is the last day of your life. Cherish those you can and still remember as in time you too will be on the path of The Long Good-bye.

Tracy you always give me something to think about. Being told you said or did something over and over when you know in yourself that you never did that before, has got to be a nightmare.
You have to keep asking yourself are they just saying that or is it really true.
I can never imagine what you and our LO's are going through.

Thank you again for giving me some insight on what Bill is going through. It makes it easier for me to be more understanding when Bill does or says something that isn't really him.

I love Bill and I love you even though we have and will never meet.

I pray for strength to get us all through this.

Dearest, sweetest Tracy,
You brought me to tears.
Thank you.
And this on the day that I had to help my sweet Daddy shower for the
first time. He can't remember when or if he did, and it was becoming
increasingly apparent that he hadn't for quite some time.
He was so sweet about letting me help.
He was so grateful when he was all clean.
Thank you, Tracy, for helping me remember my dear Daddy's heart,
and his humanity.
God Bless you and your family,
Carol

Tracy,
Just wanted to ask you. Does Bill remember when I lose my temper and yell at him about forgetting things.

I hope your answer is that he doesn't because I always feel so uncaring, selfish and guilty when I say things to him.

Tracy,
Your post couldn't have come at a better time for me. Mom has been getting so much worse lately with remembering things. And because I'm having a problem with my knee, I've been really impatient with her and saying once too often that I've already told her something a dozen times.

In fact as I was reading your post, it came up again, and I didn't handle it very well. She has actually come out and said to me what you're thinking. "Why are you trying to make me to make me think I'm going crazy!" I don't mean to do that Tracy, and by now you'd think we would all know better. I see the pain in her eyes as your husband sees yours, and it breaks my heart as I know it probably does his.

Tracy I have a question I'd like your opinion on. And I believe at this point in time, you and Carolyn are the only ones that might have the answer to this, as you and her are the only ones that can directly relate to it.

Would it be wrong to keep a day to day journal for Mom with what we talked about throughout the day? And then show it to her at the end of the day? Or do you think that would remind her too much that she is forgetting and get more frustrated?

I've thought about it before, but didn't think to ask you and Carolyn about it. I want your honest opinion, no punches pulled. I respect anything you have to say regarding this, and am open for any suggestions.

Also, do you think your husband would like to join our forum and talk once in awhile? Maybe him coming here would benefit not only him, but you also as things are getting a little tougher. Just a thought.

As always my dear friend, thank you for the insight that you bring to us. And let us know when ever we can help "you" as you help us.

Love,
Jackie

Jackie, I think that keeping a journal is a great idea, but I don't think I would read it to her on a daily basis. I know with me that would cause more frustration rather than help her. I do think that as in that movie that was on a few weeks back about a woman that was diagnosed fairly young (I can't think of the name of it) anyway her husband kept a journal and made it a story and then when it was completed he spent time each day reading this story to her and she realized that the woman in the story was her in the end. I think that gave her closure to her life. That is my honest opinion.

Thanks for that advice Tracy. I can see what you mean by causing more frustration.

Ok, what about hubby coming on the forum? Could we be of help to not only you, but to him also. What do you think?

jackie

Friends, I have tried to get my husband to come to any of the forums and he says that he does not like to people he cannot see (the phone is different). I does read alot of the posts here so I think that he gains by that anyway. When he gets depressed he tells me that I have all of my friends on the web to talk to and he has no one. I tell him again, "that is your choice." Maybe someday................

To Tracy's husband -

Come on big guy, join us! We need some more male opinions on here. How lucky you would be with Aitan (our moderator) to have all these women at your beck and call. Now how many men get to claim that! And you know you could give us and we could give you alot of comfort and hugs. Bet you'll never have so many hugs in your whole life as you will here!

We love Tracy, and we so love her coming here and helping us to look at the other side of AD. And to have her husband here, what a plus that would be!

Jackie

Tracy,
We were thinking of making a memory book for Mom. But I am afraid it will just remind her of how bad her memory really is. What do you think?

Sounds of Chorus of Voices behind Jackie (mostly female)
Jackie is right on the mark there, Tracy & Husband--We do need more male voices!

Tracy-

I just wanted to let you know I am thinking about you & your family and hoping against hope that you & yours were spared the horrible weather that moved through the area yesterday and last night.

Pat

jeri
we made several for mom...she looks at them all the time...that is when she doesn't hide them (she thinks for some odd reason that someone (me )will take them from her...she loves to look at the pictures.....it is her time to see the memory instead of trying to recall one.....it does get old looking at them over and over but......they are what she can currently focus on and they represent something she can visualize


Tracy: thanks ever so much for your writings they are so helpful on days when I really am giving up on caregiving....they do offer some strenghth in the writing that what I know of mom she isn't faking her memory losses (sibs think she is playing a part at various times...possibly in the past but not now....)---it does keep me in the moment rather than int he anger of frustration----I am trying to regain patience back and slowly it is returning....I jsut wish the potty mouth woud stop....

I to agree have your husband sign on in....

I've moved this topic with Tracy's (younghope) permission to this forum. I feel this is such an amazing, poetic description of what someone with AD has to go through. It's so rare that we can gain this type of insight, so I have made this a "sticky" for all visitors and members to read and share.