Weirdest thing tonight: earlier he got really confused, depressed and unresponsive. Now he's back to "normal" enjoying the dog. Anyone else see this with their DH?
yes, pam, I do see this. Sometimes my DH just zones out, or he is in his own world. And then a few minutes later, its as if he regressed a stage or two. I find this unpredictability one of the more difficult aspects of dealing with this disease - there is no steady progression, there are a lot of peaks and valleys and you go from day to day, hour to hour, and sometimes minute to minute not knowing what you are going to get, or what response (if any) you are going to get. So frustrating!
bdq,exactly! Thank you for putting into words what I have not been able to. It is so frustrating and sometimes frightening. It sounds like our DH's are about in the same place. Thank you so much for your response.
This has been happening to my DH for over a year. It has gotten worse since he entered the NH last spring. He will seem so oblivious of things, eyes fixed and then he'll smile and start talking.
I find it overwhelmingly painful, as when I saw him this morning. He changes day to day now. Just last week, he could still at least move a finger in response to other residents waving at him. Now, he cannot even figure out how. This morning when I went in and saw him in the lobby, he looked at me like he was in a total different world. He had a little blanket held up to his face and just looked like a baby. HIs eyes were glassy and he was making little whimpering noises. Oh yes, they can change in an instant it seems.
I will only make you all more sadder if I go on. I can barely go on just talking about it, and I am SO SORRY for the sadness you feel. Perhaps I should not have posted this here..I have nothing happy to say, and I fear the rest of the journey.
Coco, so sorry. I posted on your Washington D.C. thread and hadn't read this to know that Dado is worse. No wonder you feel the way you feel. Stay with us.
Coco, please don't feel that you have to be strong and positive for us - or at all. This is all so devastating and you are entitled to feel how you feel. Share it with us; we love you and that is what we are here for.
I'm not where you are yet in this journey but every time I go to see my DH and see that something has changed, I find myself going into a tailspin. I understand the weight of the sadness and despair that I cannot do one damn thing to help him. I can only love him and make sure he is safe and cared for. It never feels like enough.
You are taking on a huge responsibility as an advocate for AD caregivers and we thank you. But more important than anything else is taking care of you. I'm a big believer in vitamin B-100, as that helps keep me calm and centered, so I hope your new vitamin regimen helps.
Please feel that we are all here to listen and support you with our understanding. So sorry Dado is declining. Remember that we all feel despair and sadness. Some days are better, some worse.
You are so strong. I admire your determination to be an advocate for all of us . Going to Washington, D.C. Is a huge undertaking. You should feel very proud of yourself!
Know that it is okay to have your feelings and share them with us. Hugs!
Coco, thank you for taking the time to respond to me. This is exactly the place you should share your feelings. I don't expect to find happy posts here; how would that even be possible? I think I'm better off hearing from folks whose loved one is perhaps in another place than mine. I know I can't be prepared, as Fiona68 said, each time there is a change I go into a tailspin too. But we're all here to support each other as best as we can. I cannot tell all of you how much I need this place. I don't really have anyone to talk to and this helps so much. Thank you all.
pam, the yo-yoing back and forth is indeed enough for despair. its why we try to get them balanced with medications to avoid the ups/downs. but we well know here there are so many outside factors that can cause the effects to change. chemical imbalances, dehydration, any infections, , a myriad of things we have no control over and we can see dramatic changes. every day is a surprise sometimes. we just hope that there are more of the good ones than bad. take it one day at a time and enjoy as much of the good as possible.
coco, indeed you will do just fine in Washington as an advocate. we look forward to your reports on return. best of luck.! divvi
Coco, we need you. All our sharing helps all of us - I really believe that.
bqd, the unpredictability of this disease, yes I find that so hard also. The last few days I have had a throat infection/cold and have been pretty sick. DH has been wonderful, offering to make tea, asking what he can do to help make me feel better. It's like the old days and my old husband is back with me. Then I shake my head and think how when I was having surgery for probable breast cancer he was completely uninterested and unhelpful.
As for me I miss the reassurance that he really does love me and that I matter. It's so nice to get a little glimpse/reminder of that like I did the last couple of days. Hopefully I can hang on to that when I need it.