I am a participant in ovarian screening program at U of KY in Lex. KY and go every 3 or 6 mos for screening. Been doing it for about 15 yrs. It 's about a 2 hr. drive. Today was the day. As soon as we got in the car and started out, DH got diarreah of the mouth! The whole trip was: What are we going for?; how often do you go? what do they do to you? how long has it been since you went? why are there so many horses in the fields? why are there so many fences? (WE ARE IN KY); wonder who rakes all those leaves that have fallen? He read all the service signs for gas to me and then got upset because I wouldn't stop for gas at one that had it advertised for $1.09! (you know how long that one has been closed). Never-ending questions all the way up; I finally just had to start nodding - couldn't stand to hear both of us talk!!!! Got there early, went to coffee shop - he couldn't decide what kind of muffin he wanted, then didn't know if he wanted coffee. I finally just told the waitress what to bring us. He ate/drank it okay. Got to my screening area. They do know him there and always put a chair for him to sit on right outside the examining door. He sat there fine. When I came out he told my technician how happy he was about what they were doing, he felt it was wonderful, etc etc etc. No one would ever know he had ALZ! On the way home, he was like a different person. Quiet, but responsive and carried on a normal conversation!
He functions very well most of the time - especially at home, but seems once we get away from home - things change. That's why we don't travel very much anymore, but he's never had this happen on a short trip.
I know so many of you have the problem with NO conversation and I do feel so badly for you; and now that I've said all of this, I feel worse! At least he CAN talk.
OKay, it's over and tomorrow is another day. Thanks for listening. Love this board.
Vickie, My DH can talk also but it's usually about things I have no interest in like football, baseball, basketball.....the people who play the games and the ones who coach,manage or own it. He can't always remember the names of the people or the teams and like I said I am not interested. Try talking about something else and I get a blank look.
Vickie Somewhere in his mind he is worried, concerned, anxious all the above and more. What scares him is that he knows that cancer is so widespread so he has to rattle on and on because he wants to have a converation but doesn't know how to do that and voice his concern so he rattles. My DH is the same way he chatters asking the same questions are you coming for Thanksgiving, how are the dogs, how is the car running. It is the same list over and over which repeats depending on how anxious he is feeling that day and if I say the right thing that will calm him because he can't tell me what is making him uneasy and can't ask what is bothering him and sometimes I don't say what he wants to hear. Frustration!!! Go ahead and vent and yes I wish he would shut up and yes here comes the guilt cause I know when the talking stops I would want him to say my name or repeat those questions. This board is my sanity and such a small glimmer to hold on to but it is here and I use it often.
Janene56 - I think you have something there. He is probally worried who would take care of him if you got cancer. Reasonable assumption and he lacks the verbal skills to express himself. The same thing on different worries is likely affecting all the AD patients.
My AD husband worries about me going out without him. He is afraid I am not coming home. That I am meeting another man, etc. So, he gets angry with me about going. Today, he was ok. I had a sitter, told him I was meeting daughter for lunch (which was true) and I would bring him home his favorite iced coffee and a couple krispy kreme donuts. All was fine so I am going to continue with the donut and coffee treats when I come home.
I think they have all kinds of things going on in their brain - dis-jointed and unrelated and they drive both of us crazy with the confusion. We just have to hang together in this journey we are on.
Vickie, I'm sure Jenene really did hit the nail on the head. When I had to have a breast biospy, my DH was beside himself, talking, even crying, and he never cries. After it was over and I was Ok, he was back to his old self. If my mind was like his and this was turned around, I think I would be afraid to let him out of my sight. We're their lifeline and they know it. My DH is still in the moderate stage but probably knows he could not live alone if something happened to me.
Vickie, that isn't conversation. That isn't being able to talk about something. What was going on in the car is a symptom of the disease and not the conversation that a lot of us talk about missing. Conversation is one of the things that has already left. It is already gone.
There is nothing to feel guilty about. You were feeling stressed out anyway, and his constant talking was driving you nuts. All of us who are past the constant repeated question stage fully understand how you are feeling. And no, I'm not sorry it is over.
Thank you all for being here. I know he is concerned, anxious - that what would he do if something happened to me. He is always telling friends, doctors, family, if it weren't for Vickie (and Millie, our dog), he wouldn't be here. He is now 85 yrs. old (I am 68); he is the love of my life. Such a horrible road to travel for us all! Thank you for your support.
Vickie----You have done a great job describing my mixed emotions. With my husband, it's like you wind him up and he talks until he runs out of batteries......sometimes I just tune him out but sometimes I lose it! Then I feel guilty knowing someday he won't be able to talk at all.....and even now, he's mixing up his words more and more. The only thing we do together "for pleasure" anymore is go to church and sunday school, and this past month, we had to leave sunday school in the middle of the lesson because he wouldn't shut up! So, the doctor prescribed some tranquilizers that I give him right before we leave for early church, and by sunday school, he has quieted down. And, most of his talk is complaining (that I will try to post about under Joan's blog of today!) or talking about himself.....not real conversation as Starling said! Fortunately, I can still have real conversation with others, but not my husband, gone long ago.....in fact, probably gone before we got the diagnosis. Sadly, we never even had a "real" conversation about this disease, because of his frontal lobe damage, he has little if any understanding of the affect of his disease on others. So sad! And Vickie, be glad he tells people if it weren't for you, he wouldn't be here. The standard line in our house is that if it weren't for me, he would have never been "pushed through" the testing by the doctors, and thus wouldn't have this disease, and would still be driving (there it is again, the driving issue!!!!! Never goes away, at least for the men I know with this disease.....)
My AD husband has NEVER thanked me for being here. I know he loves me but he doesn't indicate it to anyone else and hasn't for years. If he achieved an award he would turn to everyone but me for support. I can't remember him crediting me with helping him for years. His father was the same about not appreciating his wife. For years I would see other men thanking their wives for their help and support and wishing, just once, he would acknowledge me like that.
I think that causes a downward trend in the marriage when their is not equal communication. My first thoughts are for him, when I have good news, but not the same for him. It is too late to hope for things to change now.
We have a new thing going on in the car now. All of a sudden my husband will say "Look there, it is!" After trying to figure out what he is talking about, he will say "There's the sun" He is totally amazed by the sun,moon & jets. When we were trick or treating with our granddaughters he was telling everyone we met to look at the moon.
my DH was obsessed with billboards signs anything while he was riding n the car to read outloud. i encouraged him to do that as it stimulated his reading ability for yrs. now i wish he could still do it and miss him pointing out each new sign:). divvi
On our last trip my husband read aloud every road sign as I drove. I thought I'd go crazy. Now I realize he was probably reassuring himself that he could read (I think)
You all are such a wonderful support! You have pointed out several things in your replies: Reading the roadsigns-to reassure him he can read. I know he can read some - he does crosswords, plays golf game and Texas hold-em on the computer; but he hasn't tried to read a book in years - can't follow the plot. Scans the newspaper but doesn't really read it. We still are able to "talk" about this disease. We have morning coffee in bed and just talk about everything - always have. Of course, much of the "talking" is him repeating questions to me every 30 seconds! But that's okay. My hope and prayer is that God will take him BEFORE he loses all his abilities. He is a wonderful man, so caring - Oh - just remembered (imagine that!): My birthday is Monday. He wrote it in large letters on our bulletin board. Tonight he told me he wanted to pay for getting my hair done Sat. - for my birthday. I thanked him and told him that was a wonderful idea. Of course, I'll have to give him the money! He had a very minor accident 3 years ago - had been driving fine until then. He never drove again after that. Handed me his keys and said his reflexes weren't good enough to drive! Never a problem with that.
Imohr: I am so sad for you. You are right - equal communication is so important. You are and have been important in his life. Some just can't seem to express it. Bless you.
I'm a sagitarrius and the birthday is around the corner. i bought myself a very lovely pair of earrings. the box came today and i gave it to DH and said its my bday gift YOU got me.. he held it and said meekly happy birthday and tears in his eyes- like he knew he really didnt go out and get it- but appreciated my letting him give it to me. he gave me a long hug and it made me realize this is why i chose to be his caregiver. divvi
Went to the nursing home three times today. DW was pretty mellow today. I did get a few smiles and kisses but no words today. Some days I do get two or three words--maybe tomorrow. Hard to hug her in the wheelchair and she can no longer stand or even sit by herself. So, tonight after I brushed her teeth and put on her gown I picked her up and sat her on the edge of the bed and supported her and hugged her a few minutes before laying her down for the CNA to change and prepare for the night. She seemed to like that and smiled.
Find something to enjoy out of each day. Nights alone suck.
Husband was very alert today. We went to Mc for breakfast then to WallMart. He used the electric cart and was well oriented as to where things were he wanted to see about. He was wanting a new watch and he knew where to go and look for them. Stayed awake all morning and was alert to my "driving". Reminded me to stop at the Library then to get gas..........Came home.....He went to sleep in his recliner for 3 hours woke up....and couldn't find the ice maker in the refrigerator. Kept looking in the refrigerator section. I told him to open the other door, which he did and still couldn't see it and I tapped it so he could see and he said he couldn't reach it.....Up and down...SO Quickly....I told daughter he was pretty alert today.. and now this...
We have friends in from out of town for Thanksgiving- haven't seen them since DH was DX, but I've been in contact constantly with them about his condition. So they were forewarned. They've been here two days now and DH has been absolutely NORMAL! Cannot believe it. They must think I've really been exaggerting! Not really - they understand ALZ and what it does. But it's been such a pleasant visit so far. We'll see how it goes the rest of the week. Happy Thanksgiving to all of you and thanks for all your advice and support.
Oh, how true this is. DH was driving me right up the walls. I shared that with a couple of friends. They were so empathetic and supportive. Wouldn't you know when we got back to my place, they came in and he was just as 'normal' as could be. He was chatty, charming, funny, complimentary, etc., etc., etc. I wondered if they thought I was making it all up. After they left, he asked me who they were. Up and Down. Up and Down. God love 'em.
I think that they put all of their energy into appearing normal so that people WON'T know. My husband used to be able to hold the "act" for two days! Now, he may be able to get away with it for a few hours. If it isn't during his sundowning period. It used to make me pull my hair out, but now I just time it. <grin>
Well, it at least lasted 3 days! Perfectly "normal"- then everything went haywire late this afternoon! Today's schedule was sort of erratic - and that did him in. Finally have him in bed, and our friends leave tomorrow, so we can go back to our "routine" and he'll probably be fine. One moment at a time!
Vickie We do the best we can and a lot of this is trial and ooops. I took my DH out of the NH for Thanksgiving dinner to a restaurant with our daughter and family and all the while I am praying please let him behave. One more thing to be thankful for was he was so hungry for food not cooked in a facility that he gobbled it down like it was going to get taken away from him. When we returned to the NH it was the same thing over again. "Why am I here you are the only one who can take me out of here, why do I have to stay here, I'll be good at home" I am really rethinking the outside trips because of too much stimulation too upsetting when he has to return. We do a lot of I'll try this and see how it goes maybe to get lucky and maybe not. It seems routines are very comforting to them and even though we would like to do something special it is not always special to them but I am going to still try anyway.
DH was wandering last night, first night in a long time. He didn't try to leave the house and didn't bother anything, other than keep me awake worrying what he might do. I have not yet got the high-up lock on the door to the garage because I haven't needed it yet. Son-in-law is going to put it on this weekend.
He was fine, went to bed at 9 and was up and dressed at 12. Thought he heard a truck outside and kept going to the door to the garage and looking out. Had all the lights on in the house and would lay down for a little while then get back up "hearing somebody outside to help him mow the yard".
I got him a pill for anxiety and that didn't seem to help. He want me up at 5 so we wouldn't be late. This morning, I seen his last night bedtime pills still on the counter. He is always good about taking his bedtime pills but didn't last night. Surely just missing them last night wouldn't keep him pacing all night.....He takes arecipt, namenda, neurotin, xanax, flexeril. We'll see what happens the next few nights. He has much more energy and strength on nights like last night. Must be anxiety.
Anyone else notice this much change with just missing one med time?
Made sure DH got his night meds last night and we went to bed at 9 and I don't think he moved all night. I also gave him his Xanax. I can't believe just missing 1 dose of the Namenda and aricept would have caused this drastic a change. He commented he had a good night and slept all night, mood back to normal and not as much confusion over Thanksgiving as yesterday.
Some of you might have noticed the same thing. A Holiday in the middle of the week. He kept wanting to go to Church yesterday, thinking it was Sunday morning. Even up to 8 p.m. he had removed his night clothes 3 times and was irrated with me for "making us late". Mentioned about Sunday School this morning one time but now seems to accept it.
Imohr, my DH also takes aricept (only 5 mg. mornings) and namenda (only 10 mg. mornings) - none at night. He doesn't take any of the others yours does. However, mine has missed some mornings taking them - with no ill effects. But he had sort of a meltdown Thanksgiving afternoon. Got him in bed early though and he slept all night. He told me today he has lost all concept of "time" and "days". HE KNOWS THIS! And it's true.
So.....I don't know about your medications and missing one dose but I wouldn't think just missing one would throw him so far off. Could be just another roller coaster ride we have to take. Hugs to you. Hang in there!
I remember that at least one caregiver mentioned that missing a single dose of Aricept could throw her ADLO waaaaay off. It surprised me, too, but I suppose it depends on the patient.
But having the holiday on top of the skipped dose could certainly make it worse. Or maybe a new moon is just as bad for some patients as a full moon!
Years ago, when my hubby could take care of his own meds, he would sometimes miss a dose. We'd discover it and straighten theings out. As his conditions(s) progressed he began having more trouble with this, and I took to reminding him. Eventually, his conditions worsened and hus ability to take care of his own meds lessened. Now, my hubby takes a whole list of meds. I do all the counting out and setting them out for his 3 daily dose times. Even so, if there is some disruption in his routine and he's just "late" with a dose (as in 2 hrs.) I can tell. Sometimes this is because of a sensitivity to a med; sometimes because the dose of a med is at a maintenance level and very fine tuned. Either way, I may have to catch a "late" dose, but we DON'T MISS any. Before I took over the med administration, we did have a couple missed doses, and we had a-- take 2 days worth and start the third day's in 2 day's time. There were problems with both scenarios. He's excellent about taking his meds and even asks if I don't have them out yet, or if he can take them yet (maybe it's 11:45 and he takes them at 12). Basically, he has a window of time to take each dose (about 2 hrs). There might be more leaway than that, but if I can tell he's missed them in that short a time, I don't want to know how it would be if he missed for longer, or just skipped.
This week's schedule has been off, because of the holiday--in-home help coming on a different schedule. Nothing else changed, except the changes in timing from that, and he's been sleeping more in the daytime; up watching out the door more at night. Nothing drasticly off, just off. Thank goodness we are nearly back on track. Only normal things on the docket this week.
My DH used to be so good about his meds. He takes them morning and evening with 1 pill in the mid-afternoon. In the last few weeks, he has gotten awful about taking his meds. We have the little pill organizer container for twice a day for a week at a time so I can easily monitor his meds, but sometimes I check and he has left one pill in a section or has skipped his meds all together. He says he is taking his afternoon pill, but I frequently doubt it. I am looking for another container that has three wells for each day. My biggest problem is that I work and by the time I can check to see if he has taken his meds, it is several hours later and it throws the whole day off since some of his meds can't be taken less than 6 hours apart. I have tried calling him from work and setting the alarm on his cell phone. Nothing seems to really work. His depression and general mood have been so awful lately. I am sure the erratic meds are part of the problem. Any suggestions.
Stephanie you could check with your husband's doc to see if any of his meds could be switched to dermal patches or sustained release. Both need to be taken or applied once a day.
Stephanie, sometimes the holdidays and busy times cause undo stress on our spouses as well. such little things can throw them into a tizzy. on the meds, it would sound if DH is at the point he isnt to take his meds on his own it maybe time for adult daycare or have some inhome help a couple hrs per day now. i know even with me standing there putting the pills in DH mouth he manages to spit them out when i am not looking or hoarding them in seat cushions. if you want him to get the meds it may be time you try to setup a time where you personally can give them, like lunch hr from work or have someone in to help him out for a couple of hrs each day. or talk to your dr about getting times setup that work with your schedule, would mean rebooting the time sequences first off to get things lined up. one thing we do know missed meds are not what we want, a nosedive of sorts is possible with inconsistency - even a pharmacist maybe able to give you a more workable time frame to take the meds on your schedule? hope you find a solution, divvi
I need to vent so chose this thread. This has been a bad day. It started this morning at bible study when I noticed my wife sucking on something in her mouth. I couldn't get her to show me what it was without disrupting the class, so I took her out into the hall. It was her hearing aid, which she had managed to chew in half. Then tonight after dinner she wouldn't take her pills properly, just keeping them in her mouth. After I finally got her to swallow them, she really upset me by stating that she wished we could have a quiet evening dinner for just the 2 of us. She has no idea what I would give to have such an evening when we could discuss anything and everything. Since dinner she has been talking to her stuffed kitty and basically ignoring me. She constantly tells the kitty how much she loves it. I just hope I can survive the stress of this caregiving so that I outlast her and can take care of her.
Oh Marsh, this is heartbreaking, isn't it? I don't know what I'll do when my DH gets to that stage. I think I just can't go through that. I'm sure God gives us the grace to do whatever we have to do when the time comes, though.
marsh - There are a lot of us here who hope we can outlive them so we can take care of them. This is just so much stress for all of us. Take care and continue to post your feelings. It does a world of good to be able to vent on this site.
I think the question of my being able to care for my husband is a biggie for me, too. My husband is at stage 5, just entering stage 6. His mother lived at stage 7 (basically a zombie, a body without any mind) for 7 years—she was very healthy in body. My FIL cared for her at home for six of those years finally putting her in a nursing home when his heart gave out—he died three months later.
My husband also is very healthy-- no heart problems, no arthritis, no diabetes—nothing except AD. I don’t think I could care for him for that length of a time but he conceivably could live a long time. He’s 78 now. I have not been able to go anywhere without him for the past year. The only times he has not been with me has been when I went for my yearly exam and when I had a permanent.
Had an odd thing happen yesterday. It was a real eye opener and if I hadn't been reading the various posts on this site, I might have missed it completely.
DH has had a very stiff and sore neck for over a week. I finally convinced him he had to see the doctor because it should be getting better by now and it isn't. DH hates doctors and hasn't seen his PCP in over 6 months. I saw the PCP in October and he put me on antidepressants and told me to just be patient and hang in there.
DH kept telling PCP that he didn't know why his neck was so sore. He said he had a really soft pillow and so it couldn't be the pillow. I swear! If he said that one time, he told PCP at least 15 times and asked why he had a still neck every time. PCP treated him with a shot and told me to bring him back on Friday if he wasn't better.
Before we got out of there--I swear this is true!--DH went through his story about his soft pillow one more time and asked the same question again. PCP was trying to maintain patience and with just a tiny--almost imperceptable tone in his voice said "Oh, I really don't know."
I truly don't think he had ever dealt with the constant repetition before. When we left, he clasped my shoulder and said "good luck." Perhaps it was a learning experience for PCP.
I just thought it a bit unusual and wanted to share it with you. Maybe it's a vent, too. :) I feel a bit guilty because I was really a little pleased it happened. What does that say about me?
Mawzy ...... all it says about you is that *finally* what your husband has been doing for so long to you has finally been done in the presence of another which validates you totally !
I think it was probably an eye-opener for your PCP .... what they read in books about AZ/Dementia is very far removed from the actual reality of all we care givers deal with. IMO, Physicians are taught the Epidemiology of the disease(s) from the scientific perspective not the reality the care giver faces each and every day.
Speaking of PCP's......... IMHO most of the Internal Medicine types don't have the foggiest idea how to deal with a patient with Dementia/AD. Most of them don't know how to use the medications prescribed for AD, in some cases they don't know why a patient is taking Aricept or Namenda. I have had nurses in the doctors offices ask my wife why she is taking Aricept and Namenda, we even had one ask us "what is Namenda". They don't recognize the sympthoms of AD or the medications given for AD and try to talk with and deal with the patient as if they were completely normal.
I go with my wife on every one of her Doctor visits, it is surprising how many times I have to correct her on part of her medical history. (I know you guys aren't surprised). My wife does a lot of confabulating when she explains her sympthoms or medical history.
Marsh, you are not alone, there are many of us traveling this road with you.
Marsh, time to take the hearing aide or she will swallow it. my DH went thru 4 pair of them til the insur coverage i had on them would cover anymore after so many losses. he also put them in his mouth. my DH suffers alot of hearing loss and it makes it more diffficult to work around- but safety issues arise if they put things in their mouths which they inevitably do. mine had a watch battery in his mouth 3days ago, miracle i saw it in time. a hearing aide could choke her. sorry you are having such a time, its an everyday task to keep up with them, divvi
Since she chewed the hearing aid in half I threw it away. Now I need to decide whether to go though the effort of getting another one, or just talk louder.
marsh did you check to see if the battery is still in the hearing aide if she chewed it?? they are small and come out so easily...hope its still in it! ugh, i know how you feel..divvi
Which brings to mind: a word of warning about thermometers. Don't use the kind with mercury in them. My sister, when she was quite little, accidentally bit the thermometer in half. Scared about what Mother would say, she swallowed half of it. Imagine the look on my mother's face when she went to take the thermometer out of her mouth, and only the top half of it appeared!
To the hospital for xrays. They showed big chunks of glass, and also globules of mercury, so what she had done was confirmed. There really wasn't anything they could do, so Mother was told to search my sister's bowel movements for several until we were sure all the sharp fragments of glass had safely been passed, and to watch for signs of internal bleeding.
Mercury vapor is very poisonous, and so is mercury liquid on your skin. Sometimes, however, mercury liquid in the body does not ever interact with the cells or tissues, and this is apparently what happened with my sister. She was never sickened by her unusual snack. So no harm done, other than to my mother's nervous system.
FYI, I have to take him back to the doctor tomorrow. It's been 13 days now and he's still in a lot of pain. I was so hoping the shot he got would help, but it didnt seem to do the trick.