I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. This is a weird disease, as we all know. Never can predict what will happen next.
No, that's true. I am interested that he is insightful enough to consider the possibility that he would not be able to remain at home. Some feel it happening and try to fight back, and some just drift into it completely unaware.
Yep, each time that happens, I think back to that movie, 'Awakening,' starring Robin Williams/Robert DeNiro. It's always a surprise when those brief 'awakening periods' arrive ... and then, all too quickly, they are gone. However, it's awfully nice to enjoy those moments when they do come! This is such a weird disease!!
Joan, my DH's doctor told me not to do anything for him that he can do himself. This is hard for me when I see him struggling with something that I could do for him so quickly.
Dazed--I'm not sure about that. What kind of doc gave you that advice? It's true that it's good to preserve independence as long as we can, but this is not like raising toddlers, who need to struggle in order to learn. Sometime avoiding frustration is more important than letting him do it, I think. Depends on how you perceive he feels about it.
I agree with Emily; I started out thinking I should let Steve struggle, but couldn't stand it. I immediately noticed that he seemed grateful for help each time--years later, he still says "thank you" when I give him food, do personal grooming for him, etc. I think it's more than just ingrained manners, it's that he appreciates not having to struggle.
I also agree with Emily. My wife seemed to slip away willingly. She wanted nothing to do with it and I told her I agreed with her. For several years while she was reasonably coherent we pretended nothing was happening until November 2010 when I applied for help. She only once in all the years cried and asked "what's going to happen to me?"
I notice that most of you have a spouse who seems more coherent at recognizable stages than my wife was. I don't know what I'd do if she could grasp anything. It would be extremely hard on me if she was there in a home and even parts of her understood that. My heart goes out to all of you.
DW and I had the same experience which I wrote about in the thread "We had a great week" 4/23/12. A visit from an old friend brought out expressive/receptive communications that hadn't been present for nearly 2 yrs= Full rational sentences and appropriate responses. This lasted 7 or 8 days, a week of on going stimulus and visits and remains a very special memory In a subsequent conversation about the incident with a cousin who is a research MD at the NIH, the associates that he spoke with, he's not working on AD, attribute the temporary change to the excitement of recognition releasing brain chemicals not unlike Endorphin's being released during exercise. Exercise and entertain more was his only suggestion.
Re: Other thread written under different screen name, I had naively posted an Email address under my former screen name and then began to receive salacious Emails. I can't be sure my Email address was obtained from this site or not, but I changed my screen name to Marty. I made no attempt in my posts to hide the fact that I was the same person who used the former screen name. I just didn't advertise that fact, that would have defeated the purpose. Most on the site quickly recognized this and when asked I confirmed the facts openly. Nothing nefarious was intended by the change.
I guess I need to clarify what and when our doctor told me not to do anything for DH that he could do for himself. 4 and 1/2 years ago when he was first diagnosed, he couldn't answer the question "What floor are we on?" He didn't know. I told the doctor later that the reason he didn't know is because when we walked up to the elevators, I looked to see what floor the office was on and I was the one who pushed the buttons when we got in the elevator so he didn't know what floor he was on. That's when the doctor said "Don't do that....let him do those things as long as he can."
I would never let my DH struggle with anything if he was getting frustrated or upset but I probably do too much for him because I can do it quicker and with less effort.
What I was referring to is Joan's husband trying to do more to help her and I think that's a good thing. If he can do those things for himself, please let him.
I let DH do, or try to do, whatever he wants. It may take him a very long time to accomplish it, but that's all I have now - time. He always wants to "help" me, so I let him as much as he can. He loves to vacumn and clean off the back porch carpet with the blower. We probably have the cleanest floor around - because he'll do it everyday! No...he doesn't do it like I would, but, so what??
And, yes, it is a good thing that Sid wants to help Joan. We need to keep them feeling useful as long as possible, I believe.
i think bobby most the time until sundowning starts, is aware of being at home. i think he is too aware of it to be placed yet. i think they would kick him out or drug him up to keep him out of everyone's room and from stepping on everyone. the vision part is a beast! poor animals here get not one minutes peace except during the night. bobby will trip right over our grandson. our grandbaby on the way will sure not be able to nap on a pallet like lucas did! bobby seems to be having alot of trouble now with responding to where i am at when i call for him. he will not turn towards me anymore. oh and i have not looked for a discussion about it but does anyone deal with excessive drooling? he would love to help always sticks out his arms to take bags but would just drop them if i gave them to him. i tell him thank you but i have it and he seems fine.
he is on 1 mg of klonopin at night, in the morning. about a half teaspoon of keppra for the myclonic jerks. somedays are better with the drooling. i know if he is very tired or if he has had to have allergy meds such as claritin he does not close his mouth as good and maybe is not breathing through his nose very good
Just a thought...I was advised to allow my husband to do things for himself as much as possible, i.e., I put his day clothes out and immediately hide his PJ's so he doesn't "layer" everything, I button one button on his shirt so he can follow with the rest of the buttoning, I put out his toothbrush with the paste already on it, etc., but I leave the rest up to him. The reason being, (and this is a huge simplification of how it was expained to me) that it has been proven that it's possible for information that has been lost due to volume loss in one part of the brain to be "relearned" and stored in another one of the vast areas of the brain that not much is known about.
When my husband stopped shaving, I started doing it for him. I had no idea he still COULD shave until the occupational therapist came over, laid everything out for him, put the razor in his hand, and lifted it to his face. Once he got that far, he took over where she left off and continued to do it by himself and still does.
I don't know whether or not this is an example of new circuits being laid down, probably not, but it seems to me that, given a choice of doing it for him and getting everything out for him so that he can do it himself, the latter makes more sense.
Yes, often the "muscle memory" kicks in for things like shaving or tooth brushing, once you put the tools in their hands, and help get things positioned. Jeff was able to shave for a while if I got him started, but lately he applies the wrong part of the razor (electric of course) to the wrong part of his face, so I just do it. They don't always get him shampooed properly at his ALF, and he can get oily, so I showered him today too. He can still scrub his head once I apply shampoo it seems.
As recently as last year I would lay out his clothes after shower, in exactly the order he would need to put them on. He can't put anything on anymore.
I was wondering why my dh started shaving again...for months he only seemed to remember to shave one half of his face. I started laying the stuff out for him and now he is back to shaving and he always comes back in the room where I am and looks at me and says see....I just shaved. He seems so proud that he can do it right again. Strange.
donnaL, Lloyd seems to want to walk wherever there is not a clear path and trips (but doesn't always fall). I know if I am going upstairs (our stairs are partially open to the LR) and call, it takes a while for him to know I am calling him. Then he will see me and not know how to get there. Lloyd always wants to help but has no concept of what to do. As far as the drooling, he doesn't do it anymore. Certain meds seem to make him like a zombie and those were the ones that made him drool. For him it was Depakote and Keppra. Of course he started on 500mg with both of those. I stopped both of them. He takes half a teaspoon of Neurontin at bedtime for myoclonus,sleeping, seizures, and general pain. Has anyone noticed that their LO's problems are more pronounced in the mornings when they first wake up? Lloyd has always had his seizures first thing in the morning. My thought has been it takes a while for his brain to engage. Also most myoclonus and falls are in the mornings.
Linda, as usual, DH is not the "norm". His best time is mornings. I can leave him for an hour or so then. Sundowning is starting earlier - where it used to be around 3:30, now it's around 1:30 or 2:00. His near falls occur late afternoon, when the jerking starts. He might be walking to the kitchen and the jerks start, then he almost goes down. I do lead him from room to room most of the time, and have been able to prevent a total fall - at least in the last few weeks.
It is pretty amazing. Sid's memory is so poor, he can't remember what was said a minute ago, yet when it comes to his emotions for me, he does not forget. He keeps telling me (over and over) that he appreciates how much I do for him, and he is going to try to do as much as he is able. All this week, he has gotten up from his den chair to come into the kitchen on his walker to get his own drink or put his plate in the dishwasher. When we were sitting in the den together one night, he even asked me if he could get me a drink of water.
I have read articles about "emotional memory" - they may not remember what they do or what is said or what they say, but they remember emotions. He will remember when I have gotten really angry at him, although he can't remember why. Although he has forgotten most of the experiences of our 42 years together, he remembers how much he loves me. It is absolutely killing him emotionally that he can no longer be the husband he was in so many ways, so he just keeps telling me how much he loves me. It fills me with sorrow to see him so defeated.
I wish my dh had emotional memory he has zip, none, nada. For me this is by far the hardest part. Flatten affect...and nothing to say, share, feel, nothing.
I forgot to answer your previous post - no, my family said nothing to him about the situation. My sister thinks he's worse off than I think, and my BIL, well, my BIL watched his father and 4 uncles die of AD. He's not about to say a word to Sid about it.
I am so sorry about you dh's nothingness. What sadness for you. There aren't words to describe how horrible this disease is. joang
I wonder if some men are afraid of directly showing their emotions (love and appreciation), in case it makes them seem weak. My first husband did that. Whenever we became very close, he would sabotage it by pushing me away. He had been raised by a domineering, powerful mother, and I saw so many instances where he would insist on his authority at work (he was a microbiologist and department head at a university) when it was not necessary and actually worked against him in the long run. The question of power has always interested me. It too often is misused. I wish I knew more about its dynamics, if for no other reason, than how to deal with it.