For the last several months, my husband's behavior problems abated and he was much more cheerful and easy to get along with. No change in meds or anything else. This week his behavior issues have surfaced again and I am noticing increased confusion, visual agnosia, etc. It is clear to me that he is going to another level in functioning and now I wonder if the recurrence of problem behavior issues is related to that. Has anyone experienced something similar?
I've seen, in the past year, a couple of bad patches, lots of moaning and grumbling and unawareness, but then he pulls out of it and is back to his usually calm/passive state. Really, over the past year, I haven't seen much change in his state at all. He's 84. He was reading me cartoon captions last night from an old Peter Arno book. I don't think he "got it" many times but he was happy to read them and describe the cartoons to me as I worked at the computer.
Sorry, I wish I had an answer. I just don't know. I think it depends on their level of functioning. When they are very aware of what is happening, perhaps they do get more angry = behavior problems when they realize a decline. When they are not aware - who knows?
I expected so many bad things to happen when we got the AD diagnosis - I NEVER expected the behavior problems. They're worse on the caregiver. I don't think they even realize there's anything wrong with their behavior. I know that Sid was shocked, absolutely shocked, when I told him screaming and yelling at people was innappropriate. "But they were doing something wrong", he said to me. "When I see someone doing something wrong, they need to know about it." It took quite a bit of convincing, and I still don't think he "got it" that yelling at people at the top of your lungs in public, in front of Publix grocery store is not appropriate behavior. {{{sigh}}}}
I was also shocked when G's behavior turned, and he said he's been Mr. Nice Guy for 40+ years and didn't have to do that anymore...and proved it by being dreadful to one and all! He still will be incredibly rude to service people who are just trying to help. Anytime I leave him alone, when others will be around, I warn him about his behavior ...he sees nothing wrong with it. That said, he is quick to tell me when he has behaved in an acceptable manner...teeter totter time.
Ya know, one minute I think I'm really "on top" of this AD and I believe I know where we are, and how he's doing. Then, I read about your spouses. My husband doesn't have incontinence problems, occasionally, he gets frustrated at something, (usually me) and he'll stand up stiff and with fists clenched at his sides, he'll sream about 4-5 times to the top of his lungs...and then it is passed. SO, I say, Ok, he's about 5-6. But then, I read about Briegull's DH reading cartoon captions..(My DH cannot read)..and he rarely talks, seldom acknowledges anything to be funny or even amusing.. (takes a lot to get him to smile), he doesn't want to leave his chair/house, - doesn't want company to come here, won't watch TV very much and he sleeps at least 16-18 hours a day.. - he's just HERE.
So, where does tht put him. I have to cut up his meat, he prefers eating most foods with his fingers. No hobbies, no interests, ..not much "there".
I suppose it doesn't matter the Label or Stage he is in, but it proves no two AD patients are the same...one more time.
His neurologist said he is in the Severe Stage. The next and last stage, she refers to as Profound.
Nancy B I don't see much sense in "staging" either. Your husband sounds pretty good for the neuro to have staged him at Severe. I think what gets so many of us off balance is that they "bounce" from stage to stage. Drives me nuts as I never know what to expect.
Others have mentioned that with AD they will loose the control button. Majority of people have to control their impluses and one of them is to say what we think or correct others. For most it is a sign of maturing. Think of a child - they have to learn to control their impulses to grab a wanted toy from someone, hit or bite, scream at their sibling, etc. Most will learn it as they mature but then we all hear of 'road rage' where someone has lost it. With AD they are regressing backwards and it has been mentioned many times control of emotions is one that is often lost.
I am trying to remember something from at least 15 yrs ago & I cannot find the sketches. But I think this is close to what a doc once told me. There are different rates of decline. Some go downhill like a slide; for others it's like stepping off a cliff; and others go in plateaus, remaining in a plateau for some time, then a step down, then another long-time plateau. I think this is what my DH did. I also think there could be another kind, sort of like the spikes in a heart beat, spike up & quickly spike down, then repeat. And, of course, there's also the sliding back & forth with lucid moments. It's just one more way to drive CG's nuts, you never know what or when or how other patients react, which may not be like your LO acts at all.
Interesting, Betty. For my husband, up to now, I would say it's been plateaus. This week, however, I think he did step off a cliff. It will be interesting to see if he spikes up again.
My DH (FTD) is still pretty aware of his decline. This causes him great emotional pain. There are times however when he seems much worse. I have been trying to keep track of the triggers, for him it seems to be noise and stress. When I was in the hospital this past week, he at first wanted to stay attached to me. He pulled up a chair and held my hand for hours, slept in my room etc. Then suddenly he became aggitated and confused and wanted to go home. He only came back to see me for short visits with our daughter and then return to his "man cave" (our downstairs family room). He retreats there whenever he needs it, which is most of the time. Even with me just home from the hospital, he doesn't stay upstair in my Mom's sitting room with me for more than a few minutes, once in a while. When he thinks of it, he gets extremely aggitated at the thought of missing his 3 drs appts at the VA (2 hrs away) on Wednesday. I've had offers from my SIL to take him, but there is no sense in him going without me, as he cannot remember what he wants them to know. Aghhhhhhhhhhh!
MarilyninMD - when my husband was progressing and going through his more aggressive spells, one doctor told me that it was not unusual for them to get aggressive when going from one plateau (or stage) to another. He is now in stage 7 and fairly docile, but thinking back, there was always increased aggitation just before a drop in abilities.
Thanks, Therrja, that's what I had suspected. It was just too much of a coincidence to have both issues occurring simultaneously. His poor brain must have had a really rough time this week!
I have a Stephen's Minister who comes by every week to talk. We were discussing the peaks,valleys and plateaus of an AD patient, and she said it sounds like the Dow Jones Stock Market graph looks. Peaks, valleys, plateaus...but gradually going down, down, down.
Personally, I find that doubly depressing....but we agreed it was a perfect analogy.
MarilynMD, what you are saying makes perfect sense. This is so flippin sad. My dr just changed me over from Klonopin to Valium. She said I looked like a scared kitten sitting in her office last week. Now this damm back injury makes taking care of DH even more frustrating for both of us. Well, at least the sun is out. Haven't seen that in a while.
Ha Ha, when I first read this discussion title, I thought it said "going to another Planet". Somehow that seemed appropriate. I feel like I have gone to another planet this week.
Has this week been particularily bad for everyone?? Maybe it's the change in the moon or tides or something. One of the toughest weeks I've had so far and to top it all off, I fell (misjudged the height of the speed bump I was walking over) and bruised my elbow, ribs and knee. I feel like a truck ran over me. The day before, I gently hit the car in front of me. I've never had an accident and this was minor but just one more thing to deal with. Mom and Dad both admitted to hospital. Dad facing the start of Chemo tomorrow and my hubby living his Jeckle and Hyde life. If I don't give him seroquel every 3 hrs he is verbally abusive. His behavior is constantly up and down but his life with alz has been clifflike. He seems to be ok for a while, then takes a sudden major decline. Never really gets much better after the decline. My brother called me this am and was crying about my husband. He was the only "brother" my brother had and is finding the loss particularly hard. I was consoling him!! That was a change of pace. Everyone loved my hubby so much. He was a firemen and a true hero so I understand how they all feel. I have let go of the hubby part and now just concentrate on the mechanicals of caregiver. I have had to numb myself a little in order to cope. This website keeps me sane. Sorry- there I go rambling on again.
The co2 (whatever that is) had to be replaced. It was going out, according to the auto computer. I have no idea what that is, but this guy has been taking care of our cars for 15 years, and doesn't charge us an arm and a leg.
i dont care what anyone says bout the moon stuff. its going to happen again on the 9th of april. i definately see a vamped up hyper off the wall change in DH even a few days prior. i up his meds everytime i know its coming and its helped. last time no myoclonous jerks with 100mg more neurontin /day. i go back to the reg later -how strange. sorry you fell kathryn, it happens, we talked about caregiver dementia on threads -it exists and the constant mental deterioration of daily caregiving gets us all sooner or later. i run over curbs alot! my tires are suffering. living on another planet. humm.. i think thats already happening around here.:)divvi
Yup, we have all traveled to Planet Dementia and have to learn a new language and how to deal with the strange local customs which change moment to moment. I don't think we need the Starship Enterprise, we just have those teleporter devises which beam us up or down. It can happen at the least expected times. Some time ago when my kids were teens, we went to Las Vegas and went on the Startrek Adventure ride at the Hilton. That was a lot more fun than this.
jules, we did that too. so fun. i have a family pic of all of us in position with our tazer guns ready for Scottie to beam us up. DH is in captain kirks place-little did i know back then it would be for real living in the outer limits. divvi