Hi,

I have a question for some of you who have AD, or who have had experience with what I'm going through with Mom. I am taking care of my Mom who is in the late stages now. I hope it's OK to ask a question here. I know you all are not in late stage or you wouldn't be here, but I wonder if you ever experience moments where you just can't communicate. My Mom can speak for a minute or two in the morning when she wakes up. It's not a lot, she will say Good Morning, and respond to a couple of other questions. After that, it's mostly shakes of the head for yes and no answers. In the last couple of days, I've noticed she can't seem to even get the shakes of the head going, but her eyes tell me she understands what I'm asking...she just can't tell me. Is there something that helps you concentrate when you're having a "tough" moment communicating? Is there something I can do to help her put the connections together, at least for a moment? Sometimes she puts the fork up to her mouth to eat, but she can't seem to tell her mouth to open. To help her, I was able to get her to say a word to open her mouth, then get her started eating. Lately, I have to get her to drink something to get her mouth moving. Then she can usually feed herself the rest of the meal.

I know it must be frustrating for her, kind of like how stroke victims feel. I feel that she thinks she's shaking her head answering me, but nothings happening.

I hope this post doesn't upset anyone...this disease is tough. For those of you in the earlier stages don't worry, the new medications they're working on are going to stop this monster! Mom was doing well on Enbrel until she had to have three surgeries which set her back too far so we had to stop the treatments. Some people who are in the Dimebon trial seem to be doing well. I'm only talking about these treatments here so that you all know that there's hope for the future, and hopefully you or your Loved Ones will never see the late stage.

Felicia

Hi Felicia - my Mom is close to this stage as well. Needs prompts to get started eating, usually by lunch and sometimes others end up feeding her. Sometimes she just pours her juice on the plate, like she doesn't know what that is for anymore.
Her communication is falling away more and more each week. I don't have any answers for you but I will be waiting to see what others say - as I'm close to the same road.
I don't think you've frightened anyone here. The 'stages' were the first place I went when i joined this site.
I hope you can cherish the 'good morning's' left in your world for as long as possible.
Thinking of you -

Thank you Beth. I guess it's just aother part we have to learn to deal with as best as we can. I'm here thinking of you too.

Felicia

My Mom is in late stages with only a few months left (per hospice). It's is more than okay to post here and ask questions no matter what stage someone is in so don't worry about that.

My Mom hasn't spoken anything but sounds and occasionally a few words in over a year. There really isn't anything you can do that I know of. This is just her brain not sending messages. I do believe my Mom understands but she can't tell me anything. The other day she started crying so hard and I asked her to try and tell me why she was crying and all she could say is "can't". When she tries to speak I can't understand her but I just tell her everything will be okay, or I tell her I will take care of it. She doesn't know I don't understand. I just act as if I do and hold her hand and tell her often I love her.

Losing the ability to communicate is all part of this horrific disease. I am sorry you have to go through this. Come to the boards often. You will find plenty of help and the people are wonderful

Felicia, first I have to say that your mother is extremely lucky to have you as her daughter and caregiver. No one strives harder than you have, and I can only hope that when I'm at the stage your mom is, someone like you is taking care of me.

Now, as for projecting my current problems as they might look several years from now, that's interesting.

When my brain is worn down & needing rest, I often have problems both understanding what someone says, and coming up with something to say. I can tell the person is speaking words I know, but I can't get the meaning of the words, they're just organized noise. This happens in conversation, and in listening to a tv show, or trying to read a book.

For times when I don't speak, my recollection is sparse here. If I've understood what's been asked, but don't, I think what's happening is that in my mind various sentences are sort of sparking, but nothing lights up ready for speaking.

I hope this is in some way useful.

Felicia, my wonderfully articulate mom is late 6/early 7 and is having a tough time communicating, too. I can see the frustration in her eyes. I just know she knows what she wants to say but can't put it together in a meaningful way most of the time. When she is getting frustrated, I hold her hand and look her in the eyes and say what I think she's tried to tell me. We kind of work on it together. I'm like a kid again playing twenty questions. Sometimes it works, sometimes not. If it doesn't, and she starts to cry, I sympathize with her and tell her I can see how hard this is on her and we go from there.

I talk to her like I always have, about things I always have, only maybe a little more simply - shorter sentences and such. Like Alan said, too much information is "organized chaos" for her. I don't talk baby talk and try not to let anyone else do it either. I cry on her shoulder and I'm glad I do because she still gets to be my mom and I know that's important to her.

My mom knows that I don't always understand her, but she also knows that I can see how terribly frustrated she is and that seems to help her.

My mother is also having a difficult time communicating. I am guessing that she is in stage 6. When I visit her, I rub her hands and feet, and tell her about my day. She likes that, and it takes the pressure off of her to communicate with words. She gets too frustrated, so I feel that my being with her and making any contact is better than none at all.

i look to connect with moms emotions. if i can understand how she feels, she is happy.

eating is another hit and miss thing. mom may be a little farther along then your mom. sometimes she will pick up the fork, sometimes not. she usually will open her mouth for me. i talk to her about the food she is eating and how it tastes and what she likes. eating is a happy time for mom.

Hi Felicia,

My mom is about where yours is and I know how hard it is. Mine sometimes talks in 'gibberish' or just says things that make no sense at all. She also needs help with eating. At times she can do it, but I have asked the NH staff to monitor her and help her if needed. There are times they don't though so it's frustrating. I saw her today and all she did was sleep. wouldn't open her eyes at all. Even when I was feeding her. She just said a few things and said 'I don't want to talk' and after dinner, I left her to sleep. Hoping the next visit is better. I just try to take it day by day. AD really sucks though. I'm just glad for this board because sometimes you think you are alone and you realize you aren't.

God Bless!
Pam

Experiencing the same communication with my mom. She will look straight at me and say a string of words that mean nothing at all. No sense in them whatsoever. Then the next sentence will at least be a full sentence, but it pertains to nothing in the moment. she also makes a "clucking" sound in her mouth, and one of the other residents at the home asked me today "why does she do that? It is driving every here crazy"? Well my only response is that I think it is a soothing mechanism for her, like humming would be. I was embarrassed for my mom to have the other resident say that, as I know they shy away from her and don't want her to be near them. How sad is that! Her eating is the same, I have to get her started, but then she will do okay. The othr day, I watched her fold her napkins into a tiny little triangle, and then bite on it like it was a sandwich. She didn't know the difference between the food and the napkin. 16 years we have been dealing with this disease! When is enough enough?

I want to thank everyone for their responses. I went on vacation and thought I would be able to get an internet connection but was unsuccessful.

Alan, Thank you soooo much for telling me what you are feeling at these difficult moments. It does help, and I appreciate your input very much. I know you will not have to go through this, the drugs to stop this disease will be here for you, I have faith in that!

Thank you, Felicia

My husband is at end stage. Communication has been nil for almost a year. Lately when I can rouse him he will look directly me and start to cry. Other than telling him that I love him and will make sure he will be taken care of there is nothing more I can do. He is receiving tylenol in case he is in pain. A horrible way to end a life. I can only hope that it is harder on me than it is for him.

meeko11, I am at the same stage with my Mom. I've been told she only has a few weeks left. She hasn't spoken in over a year except a few words I can't understand and sound. I do the same thing, ask her to look at me and she also cries. This breaks my heart more than anything. When I lift her to put her in the wheelchair she sits there and cries. I too tell her I love her and assure her I am with her. I think she understands more than I know but that is only my opinion and not based on anything else. This is a horrible way to end and my heart is breaking to watch my once vibrant Mom waste away like this.

Hi Felicia

Yes our Loved one experienced..communication problems in the autumn of her life..

patience is the answer my friend..with your loved one and yourself..

for me..I chose the attitude..I am ok..and you..are ok..and did my best to stay relaxed and during those times she needed extra help to eat or drink..I was there for her..with her..

and I found when I smiled and let her know..during those moments..when she could no longer speak..

that I understood..what she was..not saying..and gave her a hug or touched her hand to put her at ease..

and I truly believe.. this helped her..feel..loved and secure..and validated at that moment in time..

all we can hope for my friend..is that when we become..old.. and need a little extra..help along the way..in the last chaper of our life..

that someone is there for us.. just as ..we are for those we Love..

the tears would come to my eyes for our loved one.. many times during moments of frustration ..

when our loved one could not share what she so wanted to say..from her heart to mine....Namaste..Love Rosie