Over the past hour, Sue is sitting at her sewing table crying and saying: “I want to do something, but I can’t.” “I want to go home.” “You’re so good to me.” “People are good to me.” “I want to tell them but I can’t.” “So much I want to say but I can’t” “There are things to be happy about.” “Are you happy?” I say: “yes, our children, our grand children, our home.” She says: “Lets be happy.” “There is so much I want to say but I can’t.” “I want to do things but I can’t.” “I want to go home.” Try’s to say something: “I can’t get my things going (holds her head), so it’s fine.” Looks at her fabric, says: “I can’t do this now.” Leaves room, comes back a few minutes later, looks at her patterns, looks at her fabric, says nothing. Says: “I just want to go home but I can’t (little laugh).” Stares at her fabric.
Thank you so much for sharing that. I don't know if you are aware that I have always felt the importance of trying to understand dementia from our spouses' point of view. It is difficult, as your post demonstrates, because they have so much trouble expressing themselves.
Tracy Mobley (diagnosed with EOAD/FTD at age 38, and now age 45) is writing monthly blogs for this website from HER perspective. The Feb.1st one is still on the home page - www.thealzheimerspouse.com. The March 1st one will discuss the marital relationship through her eyes.
Asks me: “Will my Mom be there.” I say: “No, she passed on several years ago. Later she asks: “How did you know my Mom died?” I tell her that we both know, but that she forgot. Later she asks me: “Where do you live?” I tell her: “I live here with you, we’ve been married for going on 45 years”. She looks puzzled and says: “I guess it’s my mind.”
Jerry, I have read that when someone with Alz. asks about a parent who is dead, in their mind they are regressing to the age when their parents were alive. They say it is too confusing to the person to tell them that the parent is dead (who in their mind is alive.) They suggest to say the parent is on vacation or is visiting so and so and will return after the visit. It is next to impossible to get the person to accept the parent's death, and may believe it is something recent and no one has told them about it. Or they may refuse to believe it. It can be very upsetting to the person who is now living in the past.
"So much I want to say, but I can't." Reassure her that it is often difficult for people to find the right words and that you understand. Hope this helps.
This is part of what is so hard for me now. My Sharon is beyond words altogether... I don't even know when she is thirsty most of the time let alone what is really on her mind. It breaks my heart.
My dh can't express himself nearly as well as Sue but this post may inspire me (and others?) to try to keep track of what he does say. When dh does express what he is feeling it is mostly a vague restlessness: - I think it's time to go now. - What are we going to do now? - I thought you were going to fix something to eat. - You were going to do something . . . - Isn't it my turn now? (he means that I've been engrossed in my book for too long and he wants some attention) - Isn't it time now ( he means to have our bath)
Some of the things Dee asks just break my heart.. when friends ask how she,s doing and I try to discribe it I seldom get through the description of her asking me to take her home and I start to cry... I can do just about anything to keep her safe, clean and the best I can ( including wiping up poop ) to keep her nice looking,,, but when she cries and askes me to take her home is what really breaks my heart because that I just can,t do for her cause she imagines home to be her childhood house which was torn down a number of years ago .. Jerry ,my heart goes out to you buddy, there will come a better time for us all...
We handle the lost words, wrong words and repeating pretty well, though DH is aware and it's bothering him more. What upset me this weekend was when, out of the blue, he tearfully asked, "Am I going to have this disease I've got for the rest of my life?" And my answer was,"Yes." I will simplify answers, soften them when possible, use a fiblet when necessary--but I have not and will not outright lie to him. This one was hard.
Jerry, you just provided some excellent examples of the AD fog. How awful it must be for the poor souls living in it. Living with it is difficult enough.
Kathryn now tells me that she doesn't want to have this anymore and that she knows that we (my dad and I) want her to, but she doesn't want to do it anymore and will we please stop making her have it (EOAD). That she doesn't want to take the medicines anymore and she just wants to be normal and ask would we please let her be normal again and not make her do these things. I know she just doesn't understand or mean it in her mind. She is trying to say something else and maybe these are the only words that will come out but it doesn't make it very easy to hear them. This has been going on for about three weeks now. I hope it will pass soon.
I understand that they substitute words when their minds can not come up with the word they are looking for (such as asking for a mixer when they really want a spoon) and I do understand that. However, some times it is hard to figure out what it is they are trying to say.
I wish there was a dictionary we could use. I try to use a thesaurus sometimes.
Anyway, I do like this chat. maybe it will help us better understand what they are trying to say and want.
Anchor20, You are on to something.. maybe we here could start a dictionary for some of the words used by our LOs. I know my mom, when she could no longer recall the words for boys and girls, when asked if she had children she said " Why yes! I have two blues and a pink". Birbies = baby birds. She said, " look at those birbies" and I asked her " what are birbies" to which she said quite clearly " you know! baby birdies". Kind of fits the " Alrighty Then" series of events.