Gosh. I guess DH is getting towards the end stages. Here's what's going on now:
Urine incontinent Sleeps 3/4 of each day. Doesn't initiate insulin injections during the day. AM and PM ok on stll initiating injections. Barely talks to me. Just sits there. I'm so lonely. Doesn't do or initiate most ADLs. I have to do them, or remind him. Has a lousy look on his face, usually frowning. Eyes are dead looking Talks ok on phone, then immediately drops back to non-communicative Doesn't want to go with me on walks Uses walker. Walks very slowly Very very withdrawn
Where would you say we are with respect to Stages? I figure definitely all of Stage 5, and also into Stage 6. BTW, he's FTD, but was only dxed with MCI, not FTD. But he's acted out towards me verbally and physically for all of our 23 year marriage, hence I feel he's been FTD the whole time. I had to call the cops on him last year.
Based on my own experience, I would say late 6. You haven't said anything about his loss of appetite, or weight loss. DH lost his appetite July of 2010, began to lose weight and died in Feb. 2011 at age 91.
He sounds much like my wife. I put her in late stage 6. The only difference is that she does NO ADL's and does not talk on the phone. When she does talk I have no idea what she is talking about since most of it is nonsense words and the others don't go together in any sense.
Guess I have gone brain dead. What are ADL's I thought I knew, but guess I am holding the info loosely and can't remember what it is.
My dh is all of the above except incontinent. My dh can't talk on the phone because he makes little sense to anyone except me. His eating has just started to taper off.
As to loss of appetite and weight loss--Yes, both of those. He's down to 204 from 210 to 212. He's always been big on his sugar free cookies and candy, and that has tapered off, too. I'm having to encourage him to eat in the evenings, unless we go out, and even then he says he's "not very hungry", as he did last night. He's not drinking liquids much, either. In short, eating and drinking are becoming problems.
I had thought Stage 5 or 6. In looking at a list put out earlier, he's at Stage 6.
I find myself scared.
Thanks much for all of your helpfulf answers, everyone.
Hanging on, probably mid-late stage 6. My DH is not incontinent (yet), but needs help with ADLs, isn't communicative-1/2 word answers, can't talk on the phone (doesn't know how to work the phone), doesn't sleep thru the nights, still eats well and is maintaining his weight and can still walk very well without assistance. Given all that I put him in mid stage 6. He was dx'd in 2008 with FTD. Still is aggitated even tho he's on seroquel, neurontin, and klonopin.
I certainly understand your fear. That is exactly where I am. My dh had what I call a "melt-down" April 14 and had to take him to the ER. He was going down before that and now is really going down. He does nothing... when I say nothing...I mean nothing. He just sits sometimes with his head hung down with his hands holding his head up...or just sits and stares.
I know what I call the really bad stuff comes in stage 6 and it is so frightening to me.....like you are just waiting for the other shoe to drop...what next?? I know I am losing him and it makes me so sad. Last night was the first time in 15 years that he said he wanted to go to bed and went to bed before me. I know that is really not something to get upset about...but it is just something different....and I am not into doing very well with "different" this week. I cry at the drop of a hat. Got to get a grip.
I agree that the really bad stuff starts happening in stage 6. My DH is in early stage 6 and has to have help with bathing, dressing, shaving, putting on his shoes & socks,etc. Also, he's forgetting who family members are, how many and who the grandchildren are, and so many other things. JudithKB, I also cry at the drop of a hat. I do this every time there is a noticeable decline. Then I adjust and am better until the next big decline. Sometimes it's the little things. I never thought I'd have to trim a man's toenails. I know it gets worse. Just hope I'm woman enough to handle it. .....and bluedaze, honey we need you.
Hospice is coming in 3 times a week to give him a shower. Thank God he isn't fighting them about the shower like he did me. Yes...my Dh is forgetting family now too. Son in law brought card table and chairs over Sat. for use on Mother's Day. Later in the afternoon he asked me who was that guy that brought that card table and chairs over? I can see this terrible condition in his eyes. He just doen't look like himself.
I had to tell him this week not to answer the phone anymore. I had two people call and they told me they couldn't understand what he was trying to say. Not understanding him is not news to me...but, it was to them. I am afraid we could get an important call and he would never remember to tell me who called and no way could he remember what they said.
My H is FTD, dx initially in 2006 with MCI but changed to FTD recently (that dx) making him FTD since then. He has never been staged for AD. He is further along than your DH as ADL's are no longer possible. He can walk a bit with a walker but is mostly in a wheelchair. His orientation is x1. End of life hospice eval is pending. Even while pending they have been a source of comfort.
I wish I could do more than send you wishes of strength. My (his) course of this is far faster than most. This is not to put anything in the past tense because who knows how long this can and will go on.
All of your comments pointed to Stage 6. That's right where I figured he was, too. Thanks so much for your help on helping me get this into perspective. Love to you all.
Could those of you that said your spouse was in late stage six tell mehow long were they in stage six. I know everyone is different. It seems like my dh was in stage 5 very stable for several years and then just one day had jumped into several of stage six. The thing I find unusual about my dh when you read about stage six and it has several phases...like 6a 6b...etc. My dh seems to do several of the later "letters" and not the early stuff. Like sleeping most of the time and language skills really going down hill fast....these are things listed in the later part of stage 6.
I envy some of you that don't concern yourself with these stages and just carry on like troopers. But, I'm not programmed that way. If I know or at least have an idea of what I am facing I can handle it better. I do know that I am frightened by his decline now and never been in "this place" before.
My DH is in stage 5 and has been a for several yrs.He can do all adls, just needs a little encouragement. Sometimetimes he forgets to shave , but I just send him back in the bathroom. He does look dazed a lot. He doesnt have a lot to say. He talks to me more than anyone. Ive been on respite for a couple days, and he was more confused with me gone.My DD is very good with him though. I also want to know about stages, it makes me feel better. My DH is very healthy except for the alz thing.
Glad to hear your dh is healthy except for the alz. My dh has COPD and a severe Heart Condition besides alz. I really wonder how he does as well as he does with these three terrible conditions.