My dh has been acting better for the past several days. Today he did more "work" then he has done in almost a year. He dug holes for me to do some new planting. Also, we ordered some new patio furniture and he helped put it together and then he cut up all the delivery boxes to put in the trash barrel. For him this is unreal.
Also, he is no longer sleeping as much (his usual 18+ hours a day) and one other thing that is different. He isn't eating as much. He seems to get full very fast. What does all this mean if anything??
Yes...he was dxed in 2006 by family doc. and sent to neuro and dx. by him in 2007. One other change that is kind of driving me crazy is he is biting his finger nails like crazy...not just down to the tips of the top of his fingers but almost half way down the nail bed on some fingers.
JudithKB--Over the years i saw a little of what you describe in my DH. I equated it with the effects we all experience with Seasonal changes,--some with Full Moon. as well. When they are good changes enjoy them, but know they won't last. As to the nailbiting. That sounds like an O/C behavior which may need tobe addressed with meds. Unfortunately, sometimes the Dementias cause damage to the brain creating added issues for us to deal with.
I don't mean to comment on your perception but I just want to say I don't think there is any "better". This is not to say that I have not encountered the same thing (the dx cannot be correct?!)
Actually, when H has a few good days I kind of steel myself, thinking, this will not last but only get worse. And it has. Tonight what provoked an issue was that he decided, okay, do they decide like "we" might decide- to take off his pants and underwear in the living room.
Sorry! I hope that comment is not off limits but it is what happened and well, I will leave it to Joan and Divvi to decide whether or not to delete it.
It has been a bad, bad day. If your H is experiencing a miracle, well, I hope he is. There are no miracles in my house today.
Maybe I over-stated his improvement. Of course, it doesn't take much to look like improvement when you go from doing nothing and sleeping at least 18 hours a day for months...to digging holes for plants and cutting up cardboard shipping boxes to seem like an improvement. He has had all the tests, like 2 MRI's and the 2 hour test the VA gives and the mini test so many times I couldn't count. Also, he has had the dx from our family dr. and two other neuro doctors so I have no doubt that the dx is correct. Plus all the other things he does that are very typical. I know there is only one way to go with Alz. and that is down. It was just so strange that he even felt like doing something.
I have been chewing on this post all day. I have mentioned before to you Judith KB, that your mate seems to have so many of the same parallels as mine.
We had a day last week, where he husked 20 coconuts, (hard job), just like he did in his healthy days. And he had a day of doing things very well.
Then, this week, he could barely do it. Weird. I will be watching for updates to see how your guy is doing.
Ups and downs, good days/bad days are pretty normal. I suppose that could extend to a somewhat longer good phase. I haven't experienced Jeff being "better" for more than a day or two (max) at a time before baseline resumed, or we actually stepped down. But you know, there is an inflammatory process that goes hand in hand with the amyloid plaques spreading, and I've often presumed that his worst "out of it" days were due, in part, to a greater degree of inflammation. Perhaps it is greater or lesser degrees of inflammation that can allow for these changes in function.
JudithKB, hb experienced ups and downs like that over the years. You mentioned nail biting. My hb used to bite his nails, not to the quick or even so most people would notice; was more like "trimming" them. Now I notice he doesn't do that and his nails grow out. Yesterday length seemed to be bothering him; so I'll either trim them today or ask that they be trimmed.
Also nailbiting and picking behaviors here. Carosi mentioned that they are obsessive compulsive; I had asked the neuro about medicating and he nixed it. (Perhaps because my husband was already on so many meds to calm him down.) So I repeated my mantra "It's better than choking someone" to try to deal with it. One thing the angry/aggressive phase taught me was to put all the other odd behaviors into perspective!
Abby sorry you are having a bad day. We all know what that is like. I think the thing that frightens me so is that I know this is temporary and then there will be no place to go except down and the "down" stuff is the really bad stuff. He is a solid stage 5 with some things in stage six. I have noticed too that in the evening his language (speaking) has really gotten bad. Sometimes I can't even understand or figure out what he is trying to say. He slurs his words or makes a statement or ask a question that makes no sense to me at all.
He is so sweet and easy to care for right now that it almost frightens me. Coco and others, thank you for your comments.
abby i am no deleter! haha. i know what you are saying and believe me, taking his pants off in the living may be jolting to say the least but nothing anyone can post would shock many of us these days. its good therapy to rant as often as you like. when incontinence issues surface we are so overwhelmed we lose prospective. i know more than any how disgusting this can be, but we just try to understand the disease is in control and not the person. it does make for a very bad day of course. no getting around that. just know there are many who understand and deal with the very same issues. hope today is better. divvi
judith, these days of more alertness and abilities seem to be random. like others have said maybe it has something to do with chemical balances. who knows. take it for what its worth and enjoy those times. its a small treasure we get now and then divvi
Oh Judith...you struck a nerve with me. Mine was, just as you describe, "sweet and easy to care for," with a few stage 6 traits. I think what happened next is that when 2012 hit, the entire rest of stage 6 bum-rushed us, and sweet and easy are no longer the operative terms. I hope this will not happen to you.
and me too, those "sweet and easy to care for", oh my guy is just the sweetest. Thank you emily for a loving warning, though I try not to look too far ahead, I suspect this may change. Right now he NEEDS me so, and KNOWS it.
Reading this place each day, makes me a "better person" Now, while he is aware, I am trying, to give him some enjoyment. I have given up for a while on looking for respite, it is just roadblock after roadblock. Pick it up again soon.
You all probably have hit it on the head...this is just another phase...before the "hammer" comes down. I have been concerned about "what is next" for months now thinking it would be so much worse and that is why this new phase of doing things just kind of threw me for a loop. I never gave it a thought that he might start doing things again since he was in this sleeping phase (18+ hours a day) for months.
JudithKB--at one point, I felt like my husband was getting better too. What I detected was a change in attitude--he seemed happier and easier to get along with. It was back when he went from the early stage to the middle. I asked the neuro about it, and he said that Steve had probably finally accepted his dx, and that accounted for the new attitude. Do you think your husband was depressed about his condition, hence all the sleeping? Maybe now he's accepted it and has more energy and the desire to do something other than sleep. Just a guess.
I have wondered the same thing this last month. Could he actually be getting better? Things have definitely improved this last year for us and they are without a doubt related to what Marilynn described – an acceptance on his part, coupled with adjustments we have all made to make life more manageable. My husband’s rages are few and far between, and it’s not just that my son and I know how to avoid them – my husband is actually sensitive to it – he recently even stated, “I hate when I act like that.” Wow! We also have far less of that vacant stare that my husband exhibited the prior two years. It’s not gone, but it happens far more infrequently. And finally, just in the last week or so I have noticed his sense of humor seems to be returning. For a few years, he seldom joked and when he did, his jokes were falling flat and were often inappropriate. But over the last few weeks, I have seen a glimmer of his old self, with some pretty good zingers. :)
And at times like that I get that spark of hope, but then reality always intrudes with the daily confusion, memory and reasoning problems.
But I think it is possible that life can get better, even though the reality is, DH is not getting better. And I will take any positive development I can get!
I think you that believe his "new self" could be acceptance of his condition. I agree and I never really thought he was getting better. All hope, if there really was any, were dashed this morning when he went for his annual physical with the VA. They needed for him to sign a form and for the first time, he couldn't sign his name. They also asked him a lot of questions which they never have done before. Questions like how old he was, how long have we been married, how old were his kids, what were their names. For the first time, he didn't know how old he is or how long we have been married or how old his kids are....he did know their names. The VA social worker we talked to also, thinks we should have someone come in 4 days a week for 4 hours each day. Wow...that threw me for a loop also.
Talk about a cold splash of water in the face feeling...I walked out of there and it took all I had to keep from crying. I knew he was slowly getting worse, but seeing it in numerous ways today really freaked me out. Of course, I don't ever think of asking him these questions. But, earlier in the week a friend he worked with sent me an e-mail and when I mentioned to him that Nelda was asking how he was, he said..."who is Nelda?". Also, I got an advertisement earlier in the week addressed to his first wife...Betty Ann..and I pointed that out to him and he said..."who is Betty Ann?"....he was only married to her for 20 years...and he her name never rang a bell with him.
How can we be so surprised by this type of memory lose? Guess we get so use to being caregivers and unless it is something that makes our life harder or really matters in the total scheme of things we just dismiss the "minor" things that don't create a real problem for us and move on.
I think what keeps me sooooooooo stressed is that my dh can change from minute to minute-he may know to pull his pants down and sit on the toilet and in 15 minutes he will come through the kitchen with his pants down around his knees and not understand why I am upset again.Or when we start to eat a meal and he is doing fine-then all at once he can not figure out what he is supposed to be doing. Or we get in the car and he can fasten his seatbelt then we drive 10 miles and he cannot get out of the seatbelt or get out of the car. ok enough I know! I never seem HAPPY!!
Oh Judith, I was just waiting for an update from you. I am sorry the doctor visit made you sad. I remember when we went last time, and the doc said he saw a big decline, I had a good cry in the car.
Honestly our mates sound SO much at the same stage, and symptoms. We have a doctor visit coming up soon...they make the appt. so not sure exactly when. (VA)
I have written and left messages with our Social Worker, for help with respite, to no avail. When we see his doctor I am going to tell him I NEED HELP!! We were told we will just qualify for about 10 hours a week, I will take anything. As much as I hate to leave him, my spirit is really starting to sag, I am tired, and lonely.
Betty hope you got my little email card. You know, the seat belt issue DRIVES ME CRAZY!!! He takes it off and on, and takes his shirt and shoes off and on, and I try to drive without getting distracted.
I tried to go to the beach with my new WV beach towel, and he fretted so much I could not enjoy it. I am very sad this week. Honestly, I don't know how I would have hung on so well without all of you.
Coco...Here is something else that happened at the VA that you might be interested in and be prepared for. I don't know if it only happens to those that have a heart condition or everyone. The doctor said the VA is now providing abdomen Renal, Aorta ultrasounds and did I want my dh to have one. Well, I immediately said yes. Then after I got home and was thinking about it...NO....I don't want him to have the ultra sound.
What if they found something wrong and they needed to do surgery. It would no doubt be a very extensive and serious type surgery and I do not want to put my dh through that and it would be a blessing if he died of a heart attack. So, I am not going to schedule for the ultra sound. It is easier for me to make that decision now without knowing what they would find and have to make it later.
Judith - in the abdomen they would be looking for an aorta aneurysm. My bil had one and that is what he died from - it burst and he bled out while in the end stage of VaD. We knew it was bleeding due to blood in the urine. Because we knew about it, there was no need to do any testing to find the source of the blood.
Hb surprised me today and if I did not know better would think he is getting better. We arrived back in Eastern Washington where we were last summer. Today we went to Wal-mart in Sunnyside 12 miles away. He drove there without asking once for help. I did not even notice it until we were there and he bragged about being able to do it. This after being away for almost 6 months. I told him it was cause it was stored in his long term memory and it is his short term that is lost!! Made him feel better.