Yesterday I had an eye appointment and a friend came to stay with Bill. When I got ready to leave, I told him I had to go to the doctor and would be right back. He looked at me and ask "How long will you be gone". While I was gone he told my friend "I think I'm losing my mind". This was from someone who hasn't put two words together in months. Earlier in the day it was "Honey, where are you" and "Honey, come look at this".
Just hearing the word Honey from him can brighten my day. Even seeing him realy smile does the same thing. It doesn't really take much reaction from him to make me feel better.
He's still my man, even if he is no longer able to talk, walk or feed himself. And I love him and miss him so much.

Joyce,
How wonderful that Bill said those words to you. It sounds like Bill, after telling your friend he is loosing his mind, has enough in him to still not worry you. How wonderful!

Although Mom still talks, I have noticed that she has much more to say to Granny Nanny then to me. I often wonder if having a person around occassionally rather than us 24/7 caregivers, if it gives them some sort of reason to communicate more. When Laura is here, and I hear them laughing and talking, I envy Laura for what she can get out of Mom. She will sit there and tell Mom story after story, and although Moms responses most times don't make any sense, she is still talking.

Laura sits there and talks to Mom like she would talk to you or me. And I find myself talking to mom like there is something wrong with her, which yes there is, or like I'm talking to one of my grandchildren. So the last few days, I've been really making an effort to just talk to mom as I used to before AD. And I have to say, she's had many more smiles on her face, and her responses have been so much different. I think she realizes how I may treat her and she doesn't like it.

So my suggestion to everyone if you got into the same habit as I have, is to just talk, don't patronize, don't change the tone in your voice, just talk to them as you would talk to me if we were sitting having a cup of coffee.

This might not last forever, but like Joyce said, even one nice thing can really brighten your day. And if your day is brightened, then their's surely is.

Jackie

Joyce, my grandmother sometimes has these lucid moments where she will surprise us with a comment that makes us wonder if she still has AD ...
It's as if some synapses suddenly connect and speak to each other. It's sad for me to hear how Bill suddenly realized he was extremely confused and shared his feelings. It reminds me of this video I saw in one of my Alzheimer's classes about a husband and his wife who had AD. During a car ride to the doctor she said "I'm sick aren't I?". This was in moderate-severe stage, and was an uncommon remark from her as the husband described it. That's my greatest fear, that Heaven forbid I am ever struck my this disease, that I should know I have it. We all need to pray to G-D and ask Him to heal the world, and give us the insight and motivation to find a cure for this disease. The power if prayer is so strong, and so many people doubt it, but I honestly think it is more powerful than any drug that could ever be prescribed. Until then we should all be strong, and try to be patient and comfort our loved ones. As hard as it must be for us, I can't even begin to fathom how they must feel during these moments of clarity. We should all find comfort in knowing that our loved ones still respond to emotion, and we should be grateful to G-D that he gave us that therapeutic tool which we all possess.

Aitan, I agree that prayer is the most important thing at this time. Not only for our LOs but also for us. I pray every day for the strength to take care of Bill. I don't which is harder, when Bill seems to be lost or when he for that brief moment seems to know that something is wrong. Yes I do, it's when he seems to know.

Bill still responds to my emotions and he is still caring in his own way. Days when I feel I just can't go on, I will pull his chair in front of me and tell him I don't feel good. I'll lay my head in his lap and he will pat my back and run his finger through my hair. In the evenings he sits next to me in his chair and will hold my hand. These are the times that let me know that what I have to do is all worth while.

When I was young (about 100 years ago), I spent a day working at a nursing home. There was one woman there that I will never forget. She sat in her wheelchair singing away all day but every once in awhile would stop and look around and say "my God, what is happening to me". It broke my heart. Those kind of lucid moment should never happen.

I am happy though, Joyce, that Bill's lucid moments also allow him to express his love for you. The two of you have something so special. As far as he is progressed into this disease, his love still breaks the barriers and comes through. I so admire and envy that.

I am in tears as I think back to my mothers lucidity. Those moments were so precious. God, I miss her.

Joyce, that is such a sweet story. I am happy for you, that you have those little moments. You have been at this long enough, that you know you haven't just been having a bad dream, but it is so nice when they 'peek' through thid damn disease.

You never know when either? I remember when I was visiting Mom, and trying to say Good-Bye. We were sitting on the ground, and just lost it, and began to cry hard. (I swore I would never cry in front of her, and had done pretty well that far!) She perked right up, and said "Don't cry honey!" and wiped my tears away, just like I was 6 years old, and just skinned my knee. Moments later it was over, and she had no idea, I was to get on a plane, and fly 1,200 miles, for home.

Unfortunately, most of the time my mom was well aware of her failing memory. And the distress it caused her just tore me apart.

She knew.

My mom knows too Karenlee, its brutally hard.

~Kelly~

Dear Joyce & Bill,
As hard as your road is, I just want you to know
that yours is the greatest love story of all.
Thank you for sharing,
Carol

There are times when my mom knows too. She cries, and I cry with her. I'm crying now, thinking about it. This disease has devastated us and all of you.

Today also I was getting dinner ready for mom and she said she needed help with her shoes because they were on the wrong feet. It was all I could do not to cry while switching them for her.

Oh yes, my mom knows, and she fights and she fights it as much as she can. And the more she does, the more aggravated she gets and the more she either will not accept any help from me, or argues with me that she is not going to do it my way, but hers.

Today was a really good example of that. We had that wake today at 3pm for her sister. And boy, was it a disaster. We didn't have to leave until 2:15pm, so I slowly started getting ready around 11am so there would be no rush. Well, it didnt' work that way. She wanted to get dressed with her good clothes from 11am. I tried telling her that after I did her hair and makeup, she then could get her good clothes on. Plus I still had to wash her a bit, and hadn't had a chance as I was still trying to iron something for myself and organize a few things to take with.

She tried walking up the stairs 5 times, and each time I had to bring her down and tell her no, not now. After you wash, and then hair and makeup. But oh no, that was not the way she wanted it. I finally convinced her to sit in her recliner just till I took a quick bath. I was in exactly five minutes. I was wrapping the towel around me, and heard some sort of noise. I walk down here, and no mom. Not in the kitchen, family room, living room or bathroom. Of course the next thing I went to was the doors, but they were both locked. Went back up, and sure enough, she was in her room starting to get dressed.

I got so angry. I know I should have probably let her, but geez, she wasn't washed yet, and she hadn't had a shower since Sunday, and I didn't want her to smell. So I stopped her, and told her as soon as I threw my robe on, that she was going to get washed, then put her robe on and I would do her hair and makeup. Just please I said, let me get out of this towel and put something on.

To make a very long story short, I lost it. I called my sister at work, and told her she better get off early and instead of going right to the wake from work, she better come here first, or I would either kill mom or myself, and I couldnt' take it anymore. Well, she did. She got here by 1pm, got mom ready, while I dressed and did my hair and makeup.

We were finally out of here by 2:20 or so. Of course by that time I was shaking, had a headache and mostly just wanted to run away from home. See, her schedule changed, so there was no way she even wanted or knew to cooperate with me. And you want to know the funniest damn thing? At 1:45pm, she said to me, "you are so slow, you better hurry up or we'll be late for my sisters wake, and I don't want to be late, you had all day to get ready and you wait till the last minute!"

My sister looked at me with this look on her face that was priceless. I think she was wondering if I would choke mom at that point. But I didn't answer, and went on my merry way getting ready. But oh, the temptation was so so great!

But there was a high point in my day. When my sister took mom to her room to dress her, Mom wanted to put on heels. Now keep in mind that she can barely walk in flat shoes, let alone heels. I was listening to them in the room, and my sister nicely trying to convince mom that with her knees she shouldn't walk in heels, as she is so unsteady. Mom had a fit and told my sister she was not a crippled, and not to treat her like one. Finally my sister agreed, and went in her closet and pretended to look for the heals. She told mom that they were no where to be found. Of course mom didn't stop at that. So finally she told mom that probably when she moved in here they probably got misplaced, and in a few days, she would look for them for her. She accepted that, but all the way to the funeral home, she questioned me about where I put her shoes.

So I got blamed anyhow, but at least she wore flats and didn't break her neck. And then the wheelchair. Oh my God, you would have thought we were putting her in something that would hurt her. I purposely had my brother meet my sister and I at the car at the funeral home, as I knew she would hate seeing the wheelchair and refuse to get into it. She did, and oh the joy I felt was wonderful. Brother got a really good glimpse of her stubborness. But he wasn't feeling well, and said to her, Mom, sit in here now! With that he got her out of the car, into the chair, and off they went.

Guess he didn't have much patience huh?

So tomorrow should be another joyful day. Only this time I have to leave here by 10:15am. My Granny Nanny called me today to let me know how her daughters surgery went, and said that tomorrow morning she can leave her daughter for a few hours and come and help me. Oh God, what a woman. So she'll be here at 8am in the morning to help me get mom ready. My husband has to leave for work at 6am, so he won't be around again. I am so grateful to have that woman in my life. What a lifesaver she will be.


You know, all you caregivers out there, I don't know how you do it or have done it. It seems most of you have loved ones that are so much more advanced than my mom, and you do a much better job at it. What the heck am i going to do when this gets worse. Well, I know one thing. Probably not tell her that anyone has died. She has one more brother left, but I have a feeling the way he's been lately, Mom might just be the last one standing. I think if he goes before mom, I just may have them video tape everything and show her afterwards. I mean come on, is this desperate or what?

thanks for listening,
Jackie

Wow, Jackie--so sorry for your hard, hard day. Please don't beat
yourself up over it. You are a wonderful caregiver, and you also
happen to be human! Your mom sounds like such a... challenge--
I don't know how you do it! I'm so happy you've been blessed
with that wonderful granny-nanny. I just wish she could live
with you's guys full time!
Hang in there sweetie. Your tenacity and your humor... and your
granny nanny! ... will help win the day.
With total respect,
Carol

It isn't desperate Jackie, it's self preservation. If she doesn't see someone often, she would never know they were gone. There isn't anyone living that I would even bother telling Bill they died. He has no idea about my brother.

Even when we know they don't understand, it's so hard not to lose it sometimes. I will get mad when Bill won't do something and then I'll lose my temper and yell. Knowing the entire time that I am just making things worse. Then feeling quilty because I lost it and yelled at him.

He was up at six this morning; another full diaper. This is beginning to be a little much. No one can have that much inside them. Guess it's not inside though. I have to go in for an ultra sound this morning and hope the nurse doesn't come before I get back. I have a lot to talk to her about today.

The social worker stopped by yesterday and was telling me about places for respite. She told me not to bother with this one place because they didn't like her there. I told her I didn't care if they liked her or not, how did they treat the patients?
She told me three places and when I can get out for something other than doctors, I will go check them out. They are all within twenty minutes from me.

Hope everyones' day is good.

Maybe when mom's brother passes, maybe you can start the fiblets. He's on vacation, ect. if she asks. This disease is never easy and forces our hand at every turn. I hate the choices that have to be made as many of them are ever good ones.