B. is having a pretty substantial decline. For example, this weekend, he keeps forgetting that his kids live in a different city and wonders if they are coming over for dinner. They went to Canada to see his mother, who is probably dying. I think part of it, is the stress of the whole situation. He asks about them alot , where they are staying and is worried about them.
He asks me things like this after having a semi-normal conversation. And he keeps saying "i just feel like there's something i should do". This morning he couldn't remember how to get in the shower.
Anyone else experienced anything similiar...is this the beginning of a new loss? Lord, this disease is nasty...
It's a decline. It may pass and seem better, but then it will come back to this level.
Andrea had the "I have to get home" stage. Kept telling us she had things to do. (Nope) Then she'd say she had small children to get home to. (Nope) Then she'd say she needed to get home, and just take her.
Of course, about 1 in 10 of those were when she was actually AT home...but that's another discussion that we have done a LOT!!!
shoegirl, it may be a true decline, or it may be temporary. Stress can really do a number on AD symptoms, and I'm sure the situation with his mother is having a significant effect on him.
My husband is sooooooo sensitive to stress! He'll get worse, then when the source of the stress is taken care of, he gets better. The worst stress was three years ago. His bad days now are better than his worst days then. May be partly due to the meds, of course, but still ...
He also has a history of developing a new symptom which he'll have for three or four weeks, then it goes away again. For example, he had trouble buttoning his shirt. That was months ago, no problem since then. He couldn't remember how to lock the front door, so I had to check it several times a day. That was over a year ago, no problem with the door since then.
So it goes.
Try not to stress yourself out second-guessing what's going on. (I know, I know, much easier said than done.)
Shoegirl, my husband has been in a slow decline for several days now, and hasn't yet started to regain anything he lost. I had a "I can't take this anymore" morning yesterday, and I am blessed with a daughter and grandson to help me!!! I don't know how you all do it. When he stays awake 80% of the night watching movies in bed, and then getting up at 4 a.m. and me trying to talk him into coming back to bed, and then getting up at 5 a.m. and starting the day, I want to scream! Then he sits in his recliner in the den and goes to sleep! I want to just shake him! I don't dare leave him alone in the den (he'll get into things and hide things), and the others need their sleep. He can't seem to remember how to bathe, and he's not aiming very well. He walked away from me in Wal-Mart Saturday morning, and it took the two of us 3 minutes to find him! I feel so guilty complaining any more since I have help and most of you are having to handle everything yourselves, and have much worse problems than I'm having.
Pretend this is just for information and not griping, please! <grin>
Shoegirl, you are so sweet and I hope that your husband regains what he seems to be losing this week. It does happen!
Shoegirl, just a note to let you know we are thinking of you, and crossing fingers your DH has some rebound soon. i know how stressful it can be to witness their declines. divvi
Shoegirl, My DH isn't as far along but I know how you are feeling. Saturday we went shopping and I bought him some clothes and he did not remember 4 hours later. He wondered who the clothes were for. In the last two weeks this has become a more common occurance. Then he will go back to seeming pretty normal. It makes both of us sad and scared.
Mary, venting is OK. All of need to be allowed to do it no matter when in this journey we find ourselves.
I almost lost my husband the last time we were in Wal Mart too. I keep turning around to make sure he has followed me and he hadn't seen me make the turn. There he was trying to figure out where I had gone to. I stick him with the cart. It makes him easier to find.
If you are dealing with the no sleep thing, it is very serious. The no sleep thing kills caregivers. This is one of those times you talk to the doctor. So far I've been lucky with the no sleep thing. The once or twice he got out of bed hours early he was napping on a couch because he had sweated up the bed so badly he couldn't sleep in it. I lost some sleep, but not huge amounts of it.
shoegirl, my husband has been in a period of decline this week as well, but seems to be coming out of it as the cold goes away. My pen pal told me that her husband also reacts to bad weather and we've been dealing with a not quite tropical storm for a week. Had sun this morning and now we are getting ready for another set of rain showers from the west this time. If he has an infection of any kind and/or your weather has been bad, either could cause a temporary decline. Here is hoping he comes back.
lets not forget the full moon phase -its a fact- there is strong correlation to behavioural issues with full moons-didnt we just have one lately?? my DH took every cushion off every piece of furniture in the house and reaaranged them all and moved every object he could carry. plus he seemed more out of it than usual/could be. divvi
Divvi, Was your husband a character before? I can't believe some of the things he does..entertaining when you just read about them, but not living with I'm sure...and your easy acceptance of it all always amazes me! Surely wish I had some of that, but afraid not.
This disease is full of declines. The last couple of weeks several people in the facility where my husband is have gone through a decline. Several of them were doing better than my husband in many ways and now they are doing worse. At the same time, he is declining by having more and more trouble walking.
I found it very scary to watch those other residents in their declines as it was indicative to what could and probably will happen to my husband. At the same time, I am grateful that I have seen several variations of the next steps for him and have a chance to be better prepared. Of course, there are also those that seem to be almost the same as they were when he first got there at the beginning of the year.
my dad was chief of police in the town I grew up in. All cops will tell you a full moon always gets everyone going and that definitely includes folks with mental issues. Also ER personnel will tell you the same thing, and the ob docs will tell you deliveries peak.
I always thought this full moon stuff was an "old wives tale" but there must be something to it. My DH has been more confused this week and has not slept well, having bad dreams, etc. I'm hoping his confusion is temporary and he will rebound. He's been doing so well. Is there any way to prepare for these declines so we can hold up emotionally? I've been fighting tears for the last several days and today was his worst confusion.
Shoegirl, I am so sorry you are going through this. Each new stage whether it stays or passes is distressing at first. I know for Lynn each new thing, did fade.... but it always came back and stayed. I have told family I think this is God's way of saying, Ok.. this is what is next. Here is a taste of it. get a hold of yourself, and buck up for the next battle!
The good news is, with each new stage the fear .. the "I can't do this" moments, still happen...but don't seem to last as long. You can look back- see how much you have already handled and somehow you find the strength to face yet another loss. And the terrific news! Is we have this wonderful family here at Joan's place to help us pull through these trying times.
I love this quote and it is so true about you fantastic group of people ((hugs)) "I believe that friends, are quiet angels who lift us up, when we forget how to fly"
So the next thing is going to be one or more of the following: * He is not going to be able to make breakfast for himself much longer. * He is totally going to forget where things are and where they go. * He is going to start shuffling. * He is going to forget who I am.
Brother, do I relate to all of he above. G has seemed semi normal for the last bit, but after his accident Saturday things have changed. On top of all this he seemed off with bathroom visits..I recalled all the UTI comments and checked...YEP! His Dr. got him in right away this AM and he has a UTI..never one before. Damn...is this the downhill slide? I truly do not know what I would do without the help from all of you. Who would know about UTI problems? He is starting to resist "help" in some areas...has to take his cell phone charger with him all the time?? He can barely us the bloody phone! I guess I'm looking at control issues here..and there are other similar things.
Yes, Mary, venting is good...helps us retain our sanity. Somewhere I read "Yes I am holding on, but my fingernails are bleeding." That's us...
I ended up calling in to work to day for a "personal day" (ha-too bad it wasn't a spa day). But it was productive...I sat in my car and called my best friend and got to talk un-interupted. I filled out the disability paperwork for B., that I have been putting off. I called the dr's office and made an appt for them to fill out the medical portion.
I met with a blessed soul/wonderful woman that I met at an ALZ support group and she helped me fill out the initial paperwork for Arizona Long Term Care and we faxed it right from her house. If we are approved for that, I can get some help to come to our home.
Those are all things I have been meaning to do, but have been putting them off because they are a little scary and because it is admitting that we are at the next step. BUT guess what? we are...I think Nikki is right, I have been getting some little nudges from the universe. I want to listen to them before I get conked over the head!
Thank you all for your kind thoughts!
Oh yeah, full moon...makes kids at school nuts too!
One of the posts said that the current thinking is that if you give all the meds, and then take them off in stage 7 when they've gotten as far as they can go, then they decline to where they would have been had you let it go with no meds. I have to say I totally agree. Andrea made a nosedive decline, and I can pinpoint it to the drug removal absolutely. Just FYI. I still wouldn't change having done it, BTW.
Just for the fun of it, we should mark our calendars for the next full moon, and observe the behaviours! will be interesting to say the least:) and see by comparing notes how many of us see changes- No Kathi, my DH would be absolutely mortified and then some, to know the things he has done during this disease. he was the epitomy of culture, dress, style, and finess. my sis in law and i just commented last nite, how of all the diseases that can kill you, we think it was the best choice that DH does NOT know how hes been affected. i guess i can say i am glad he was dx'd after the disease took hold and he was unable to correlate the devastation that lay ahead for us. i am glad you know now to look for UTI as a culprit at times-it can play such havoc on the body its unbelievable. divvi
I sold residential lighting for a few years. Suddenly, the crazy people started coming in. Strange behaviors, complaints, etc. We'd go to the calendar & sure enough, it was a full moon. So after that, I am convinced that a full moon has its effects.
I find that any change in routine sets DH off. He needed some dental work, broke a tooth and did not want to leave a hole in his mouth. We had the tooth extracted and he has a temporary bridge since yesterday. He keeps saying it doesn't feel right. When the dentist called to see how he was yesterday, he told him he was fine. Regarding the full moon, as a school counselor, we always noticed more fights, emotional upsets with the kids, teacher and parents. Maryd
I started marking my calendar 18 months ago, so that I could show the Doctor the established patterns that I was noticing. Quess what the cycle was the lunar cycle!!!!!!!!!! So we are right one with our observations.
Nikki, you made such a good comment about having a change come for a short time, and then go away, only to come back permanently. That's just what I have observed, and funny, but when it forst happens, I say, OH Gxd, I won't be able to handle this.... what do you know, when it's permanent, I handle it. i just really needed to read eveyone's comments tonite, and the visiting blog also. It's so wonderful to know I am not alone.
Chris, I agree.. having other to talk with , share with and learn from it is such a gift! I know I am healthier in spirit than I have been in a long time. It is so sad, but somehow we do keep finding the strength. I often felt as you said, that i couldn't do this new stage, but you are right, somehow.. we just do. Amazing isn't it? Caregivers Unite! <big grin>
It's true...you think God I'm not going to be able to do that. And then before you know it you are doing it. And sometimes it's not as bad as you thought. It always helps me to come here and see how others are coping.
It is great that we have each other to draw strength and inspiration from.
Shoegirl, has there been any change ? I hope he is feeling better. Such an awesome responsibility isn't it? Please let us know. Keeping you in my thoughts and prayers~Nikki
Nikki, B. went off the Aricept yesterday and today he is a little better. Don't know if that is coincidence or not. But this morning he was able to get himself ready and used his new cordless razor without a reminder from me (which is nothing short of a miracle).
I sent an email to my family and neighbors asking for some specific help ie. helping with errands, making casseroles, taking B. for a walk and bringing me a bottle of bourbon. They rallied and are answering all of my requests.
People can be so wonderful...I think most people want to help, they just don't know how.
P.S. (I'm not naive, I know people can be nasty too...I just choose to associate with the best...that's why I am here with you all!)
Shoegirl, that is terrific news!! I am so glad you have people willing to help you. I too believe for the most part, people are kind and would jump at the chance to help. I hope your hubby continues to feel better. Hard enough having AD without feeling sickly too. Best of luck! and I'll help you polish off that bottle of bourbon :)
Don't leave me out on that Bourbon and Coke. I have some great glasses that will hold a whole can of coke plus ice and of course 2 shots of bourbonl Don't have to rebuild drinks so often that way
Shoegirl - sorry you are having such a difficult time. My H can get in the shower and during this "full moon" period of improvement for him he has been doing his shower himself. I can hardly believe it. I keep one eye open but leave him be. Before this "period of improvement the last month he couldn't turn on the shower and I had to bathe him and wash his hair. Still have to help him put on his t-shirt. He can't seem to get that straightened out.
Time confuses him. Like yesterday wanting to go to Church too early and he constantly asks me the time even though there is a large clock on the wall. He cannot follow a TV show. He either sleeps or has it on CNN or the Weather but doesn't know what he is watching. He is having trouble now with changing channels with the remote.
This instant change of personality and abilities is enough to drive us all insane. We went to granddaughters basketball game yesterday and I pushed him in a transport chair and he sat in it during the game. He loves basketball and he followed the game.
Lmohr, sounds like he is in a lull! Great. My husband has terrible trouble with tshirts. But sometimes, when he is in a sly mood, he manages to either get dressed or undressed all by selfie (at an inappropriate time, like putting on his pjs at 3 pm).. then the next time I ask him to do what he'd done, he looks sideways at me and says, you know how to help me do that.
My DH needs an Exelon patch every morning. He comes out of the bedroom with his bathrobe on all tied up. I have to ask him to undo the robe every morning. He'll untie it and stand there. Take it off, I say. He will lowever it but not far enough for me to be able to lift his t-shirt. I have to ask him to take it all the way off. He moans and groans and says "Oh, all right." Then I lift the t-shirt, locate yesterday's patch and pull it off. He howls and yells like I'm killing him. I ask "Does it hurt that much." He responds "No, I just like to bug you."
He is succeeding. It just bugs the life out of me. And it doesn't do any good to tell him to do all that stuff at one time. He doesn't remember. Sigh.
Mawzy, you may not have meant to, but you did give me a laugh. Thanks.
When I've needed to change my husband's dressings after skin cancer surgery, they've suggested that I use a Qtip swab dipped in baby oil, and work that gently under the edge of the adhesive. If I just pull the adhesive off, it can pull the stitches out. (Blurgh.) Maybe that would work for the Exelon patch?
I used the same type patch as exelon with my hormone patches. once they were on they were on! and it almost pulled skin with it when you remove it. so i know it must be terrible for AD persons even more so. my skin would be super blotchy and itchy where it came off, i would use cotton balls dipped in alchohol to soothe it down. i don think anything other than tryin got remove it in the shower and pulling it slowly while soaped up maybe. divvi
I have heard on various sites, including this one, that many patients get rashes, etc, from the Exelon Patch. That's the reason i didn't try it. MY DH gets a rash if he's in the same town as poison Ivy.(LOL) I stuck with the pills, Maybe if the patch is that problematic to your husband, that would be an alternative.
In one of his lucid moments at the doctor's office, my husband told the doctor that he didn't want to try the Exelon patch. From all I have heard from those here who have tried it - between the side effects and the skin problems and pulling it off, I'm glad he declined!
He hasn't found his first "leveling off" place yet...and it's been 20 months since diagnosed! Just a steady decline every week or so. I read what he could do a year ago and I'm astounded at what he's lost the ability to do!
Yes, shoegirl, I have! I have been applying my moisturizer to his hands daily and lotion on his arms and legs. I've had to use an ointment on his forehead or his skin peels! It wasn't like this before AD.
Mary, that is exactly what happens to B.'s legs! I was letting him put the lotion on himself, but it was cocoa butter and he wasn't rubbing it in enough and it just made a nasty buildup on his legs. Sigh...one more thing I did not think of.