Alzheimer's Disease Support Group
Alzheimer's disease (AD) is the most common cause of dementia and characterized by progressive cognitive deterioration with declining activities of daily living and neuropsychiatric symptoms or behavioral changes. An early symptom is memory loss (amnesia), usually manifesting as minor forgetfulness that becomes pronounced with illness progression, with relative...
This is me venting a frustration, maybe others have the same problem:
I feel like I don't have anyone to really talk to about my husband. Due to his 'shadowing' I am NEVER alone. If someone calls on the phone he is right there beside me listening to what I say. People will ask, "so how is your husband?" Well, of course I can't answer anything other than "he's doing ok." because he gets upset if he hears negative things about himself (well, who wouldn't? he's still a human being!). I'd like to be able to really talk about how I feel, what goes on , how difficult it is sometimes, vent a little, describe things in detail with a real live body beside me BUT I can't because he is RIGHT there. Like now he is sitting in a chair watching me type this. He can't read anything because of the angle of the computer buts he's right here. When we go out in public and meet friends, well, he's right there and to them he seems ok. He's not saying much to them and from out ward appearances he looks the same. There's no label across his forward that says- ALZ. I can't really talk about him with my kids because they get sad and I don't want to bring them down and anyway, he's in the same room. They know how he is and they listen but I feel like I need somebody who doesn't live here, someone with a sympathetic ear and strong shoulder. Do you ever feel like you are living in a bubble by yourself?
I feel like I don't have anyone to really talk to about my husband. Due to his 'shadowing' I am NEVER alone. If someone calls on the phone he is right there beside me listening to what I say. People will ask, "so how is your husband?" Well, of course I can't answer anything other than "he's doing ok." because he gets upset if he hears negative things about himself (well, who wouldn't? he's still a human being!). I'd like to be able to really talk about how I feel, what goes on , how difficult it is sometimes, vent a little, describe things in detail with a real live body beside me BUT I can't because he is RIGHT there. Like now he is sitting in a chair watching me type this. He can't read anything because of the angle of the computer buts he's right here. When we go out in public and meet friends, well, he's right there and to them he seems ok. He's not saying much to them and from out ward appearances he looks the same. There's no label across his forward that says- ALZ. I can't really talk about him with my kids because they get sad and I don't want to bring them down and anyway, he's in the same room. They know how he is and they listen but I feel like I need somebody who doesn't live here, someone with a sympathetic ear and strong shoulder. Do you ever feel like you are living in a bubble by yourself?
I could have written your post and believe me I really know how you feel. About the only difference (I"m guessing here) is that I get up several hours earlier then my husband and that's when I try to have my time to get online or sit and read or just do something by myself without him hovering or asking me what I'm doing and why.
I had to take him in for an eye exam today and realized it is the first time he's been away from home since Christmas, lots of reasons for that but also in all that time I've only managed to leave the house once or twice a month too.
In so many ways I feel blessed, he could be so much worse and in time will be and most of the time he's fairly happy in a totaly clueless sort of way, he could be one of those who is angry all the time and complaining and I try to remember this when I want to scream.
I know there have been threads about the whole asking the same question over and over and over and.....and that is so annoying but the shadowing is what get's to me. Seems he has a nack of doing it when I"m really tired, really busy and really wish I were home alone. Keep your chin up and know that your not the only one floating in this stew.
How about any support groups locally? A woman I met recently goes to a support group once a week and brings her husband with Alz. They have a seperate group that meets for those with Alz at the same time and this gives them both time to talk a little with others alone.
For my Mother when my Dad was home, I made their bathroom into a little private escape room for her as he would leave her be when in there. Had a little phone, big comfy bath things, music....she laughed at first, but found the music kept him calm outside and gave her privacy inside.
I wonder if anyone has experience with how long the "shadowing" stage lasts.
Does he enjoy music or baseball or anything you could have him listen to with headphones on? Maybe you could try this to give you a little private time for conversations?
Wish I had better ideas...but know we're out here to chat with any time! :)
In my case it seems to come and go, as do several other behaviors and I'm not sure what, if anything triggers them or if there will be a day when it comes and does not go (god I hope not). I don't think I could stand him following my every move every day, that might just be what it takes to send me round the bend.
Georgia- I hate to admit but I have snapped at him about his following when I have been overtired or over busy. I felt about it but man, I'm just human.
The face to face group here only meets once a month at 10 in the morning- that is never a good time for me.
My private space is this computer- for some reason it intimidates him and he leaves me alone when I am on it. My kids used to tease me about how much time I spent on it but now they realize this is 'my time"
So I just have to vent once in awhile.