I've noticed the last few days that DH is not walking as straight as he did. His shoulders slump. He hasn't shaved since last Sunday. It's 90 degrees here and he's wearing sweat shirts. He eats really good but if I don't fix it for him and put it in front of him, he doesn't eat. I'm noticing his eyes look so round and big now. He will sit for 2-3 hours in the same spot (his chair) and not move a muscle or talk at all. He seems to wander around--not doing anything. Just looking around. I think he's in stage 5 but maybe approaching stage 6. I've been reading all of the uplifting quotes and sayings and I don't want to give into this awful thing looming up in front of us. But, I'm so scared. I would just love to be able to break down and cry. So far, I've been a 'real rock.' Maybe I'm just being a chicken. I don't know. I really cant say anything to anyone else. This is my haven--where I go to spout off. Sure do appreciate your opinions. Thanks, again!
What's going to happen will happen. You can't predict it, you can't change it.
This disease is a roller-coaster. Your husband may just be having a few bad days. He may perk up again tomorrow.
I know how scared you are. I also know you ARE a rock, and you love your husband, and you will be able to handle what happens.
You and I, we have to learn to live in the "now". Educate ourselves, yes, plan ahead, yes, but not worry ourselves sick about the possible details between here and there. Focus on doing what you need to be doing for today.
When my first husband was dying of cancer, the doctor asked if we wanted to discuss the various things that could happen to him. He and I agreed we did not want to know. What WOULD happen would be bad enough, there was no good reason to know about -- and therefore worry about -- all of the other things that might happen. I don't regret that decision, not one bit.
I can't decide whether it's good or bad that we know so much about what CAN happen with AD. It helps us to plan, maybe even helps us brace ourselves for what may be coming, but it also terrifies us and adds so much to the stress. And if some of the things we fear so much never happen, what a terrible waste.
I have to hold onto the hope that the worst will not happen to my husband. That makes it possible to keep breathing.
Thanks! I'm taking that deep breath right now. I feel confident that he'll be a little better tomorrow. If not, well, then, he won't be better. We'll deal with that then.
We went to the attorney's office last week to have our POAs and Living Wills updated. We returned today to sign the papers, etc. DH could not understand why we were there. He was so confused I was scared the attorney wouldn't use his signature. The attorney carefully went over everything with DH and he finally seemed to get it. All it did was make me his agent, then our daughter, and then our oldest son. Sort of chain of command. He didn't shave before he went. He looked like an old man. I guess maybe it's time he looks like an old man--he's past 82 now. I can almost see him slipping away from me--an inch at a time. I gotta take another deep breath.
Oh, PatB--no there have been no medican changes. If he's stil this way on Monday, I will check with the doctor. Thanks! Any Port in the storm.
When my husband has those kinds of bad days, he has almost certainly been sick. In his case not UTIs. I'm pretty sure he is having mini-strokes or mini-heart attacks and the pacemaker is bringing him back. He will need a little extra sleep, or even a real nap, and then a couple of days later he is pretty much back to his current normal. His pacemaker checks are showing everything as normal.
Starling, will you replace the pacemaker? or have you thought about it? I was/am very close to a family - travelled with them and so on. When their mother, whom I adored, came due to have the pacemaker replaced, and was already in a home and pretty much out of it, they decided to just let it wear out and let her heart wear out as well. She went peacefully.
I will not replace the pacemaker or its battery. And yes, I've told my daughter that. No feeling tubes. Antibiotics and intravenous feedings ONLY if the Hospice doctor says it is for comfort. No respirators.
I made the respirator decision before for my mother more than 20 years ago when basically there was no hospice. Once we made that decision they didn't treat the pneumonia. They might have asked my sister about that, but I wasn't present for the pneumonia decision.
The pacemaker will be 5 years old in December. I don't know how long they last. His is one of the early digital models, so it is possible that no one knows how long they last. He has pacemaker checks every 5 weeks, and so far it is doing just fine.
My husband has a CID device..first one lasted 8 years, and he just had it replaced last summer.Probably good to go for years...good or no? We are okay right now, but ???
kathi, it all depends on where your husband is when you need to make the decision. I'm pretty sure mine is at the stage where if I had to make it right now, he wouldn't come out of the operation at the same place he is currently in. For him the next big drop in abilities will take away a lot of things that he needs for quality of life. He will lose ALL his independence. He might not be able to walk or talk. Etc., etc.
At this point I think he has several more years before I need to actually make the decision. Once he gets into stage 7, the decision not to replace the pacemaker will be easy and pretty obvious. But he is at the border between stage 5 and 6. Not so easy to make that decision right now. So I'm pretty glad that he keeps passing his pacemaker checks right now.
Mawzy, from everything I've read here, UTIs are ALWAYS the answer. :-)
But, just in case that isn't the problem this time ... My husband's symptoms are extremely sensitive to stress. He can go into a real nosedive over something that to me seems relatively trivial. For example, I had just hired a new accountant, and one of the things we'd agreed on during negotiations was that she could bring in her own work table. After she started, she reminded me what she wanted to do, and told me she'd be rearranging the furniture in her office that weekend. I'd told my husband about the agreement, and also that she'd told me she'd be fixing up her office. When we came in to work the next morning, the old accounting desk was sitting in the reception area. That was enough to stress my husband out. It took him several days to recover.
So maybe the stress associated with trying to get all the legal papers updated -- trying to understand what he's being told, maybe worry over why they need to be changed -- has been upsetting your husband, and causing the changes you've noted.
Mawsy, like sunshyne says have him checked out for uti. it causes all kinds of out of the ordinary behaviours when they are present. i guess its a way they find to 'tell'something isnt right by starting up new strange actions. uti can occur at any time but its very common in AD esp if your LO isnt getting enough fluids.ie- No 1 Cause!
they sleep more and we let them so they go hrs without hydrating. its so important to be vigil for uti, it is a silent threat -if hes ok there, then revisit the meds hes on. they could be producing side effects like you state as well. hope you find whats ailing him soon! divvi
DH is so confused. He wanders around here just looking out the window. Checking the calendar every few minutes. Asking what day it is, etc. Our one son came over today. While he was here, DH received a letter from the DMV stating "according to information we have received, we need you to come in and have your driving skills reevealuated." That was 4 hours ago. He has not stopped questioning me about who would do such a terrible thing to him. He keeps repeating that He's a great driver. Never had a ticket or an accident. You name it. You've all heard everything.
Our son left--telling his dad that everything was going to be ok. No matter what happens when you take that test, dad, everything will work out.
I feel terrible. I know it's for the best. he'll never pass the written test let alone the driving test. He keeps asking me how to get to the testing place. He will not be able to go down there by himself. he'd get lost for sure. so, I'm asking our oldest son to come out and go down there with him--to lend moral support and bring the PU back after the test if over.
I've wasted a whole lot of breath and energy explaining that when we sell both cars and cancel the insurance--add in the $$ we'll save every year on gasoline, tires, etc., we'll have a boatload of money and we can take an awful lot of taxi cabs with that kind of cash. Plus, we live right on a bus line and we can take public transportation if and when we need it. Not to worry. Life is good. Things could be worse. etc. etc. etc.
Wanna bet he won't remember anything tomorrow morning? Any takers out there? AD is not fun. Agree???
Please have DH checked for a uti, mine gets extremely confused when he has one. Its easily treated and makes a huge difference with him. Could also be a virus of some type. And check his temperature, when mine gets a fever hes really out of it.
Not sure this is the best place to ask, but has anyone dealt with double vision, where the eye muscles are not working correctly? DH complained of it this morning (on way to visit primary dr. at least) and he did see an eye dr. afterwards.
Does he have sugar diabetes? Sometimes that will cause double vision. What did his eye doctor tell you about the double vision? Was his eye doctor an opthamologist? We go to one because of my husband's eye pressure has to be regulated and he has to have drops in his eyes daily. They took pictures of the BACK of his eyes and are comparing it to the back of his eyes a year ago to watch for deterioration. They have another test that they do which showed the opthamologist that my husband had had a small stroke which affected a certain part of his vision! His physician didn't catch that he had had a small stroke until a year later!
Yes, about two years ago, before he was diagnosed with AD, DH had double vision and he does not have diabetes. He drove back home one day because he was seeing two of everything. He was checked by our primary care physician and then his opthamologist. They could find nothing wrong but his opthamologist thought it would clear up in time. It gradually went away. Still don't know what caused it.
PatB, when my eyes get tired -- lots of reading or work on the computer -- I get double vision in each eye, separately. (That is, I can close one eye and still see double.) If I get reeeeeeaaaally tired, it can go triple. The truly weird thing is that it clears up if I partially close my eyes and look through my eyelashes.
Been this way since I was quite young. I went to all sorts of eye doctors, and got all sorts of answers, from "there's nothing wrong with you" (soooo helpful), to telling me they had no idea what was going on but were sure it wasn't serious (if you have no idea, how do you KNOW it isn't serious???), to recommendations that they do surgery to tighten the muscles (which made no sense because I see fine when my eyes aren't tired), to telling me I have "double monocular pluriplopia" ... which means I get double vision in each eye. Duh.
So now I just try to rest my eyes as needed. (I guess the guy who said it wasn't anything serious must have been right, whether he had grounds for it or no.)
Uh-oh. It just hit me ... I looked it up, and that might be a symptom that your husband had a transient ischemic attack (TIA.) Talk to his doctor.
Sunshyne, My son had intermittent exotropia (what a tongue twister) when he was little. I actually noticed it in the car, while waiting after some practice of some sort, and he seemed to be closing just one eye often. I mentioned this to the pediatrician, who found no problem, but suggested I look to see how the different eyes were directed. Wow, scary. The close lid eye was pointing in a different direction than the other eye!
So, I told this to the pediatrician. He said, well, it's not really a problem till he starts school. Duh! Told dr. he started that fall. The dr. gave me a referral to an eye dr. (Mother suspects exotropia). Yup, it really said that. Please imagine ticked off mom!!! Eye dr. starts exam. Mom is right! Doing mom knows best dance! They actually do an annual measurement, and at age 7, when he hit the magic number, he had surgery. Gross description following.......they pop out the eyeballs and reattach the eye muscles. Great results from a talented surgeon.
When I was watching DH's eye exam this morning, I recognized the type of testing and also a little eye wandering. But he is fine now. We were on the way to dr. at the time, so it was convenient timing.
It was interesting to here his answer to the drs. questions though. Or maybe sad. Dr. asks, any history of heart problems in family. DH says no. I say, uh, yes, your mom died from a stroke........
DH started something again, only this time it is a little different than the last time we went through this. He wakes up at night and puts on his clothes. Then he wanders all over the house, comes back to bed, with his clothes on and lays on it, but only the top part of the body. I always think he is going to fall. He hasn't yet. He repeats this over and over.Then sometimes during the night,when I fall asleep from exhaustion, he lays in bed, clothes on and his whole body ls in bed and covered up. Anyone out there with the LO doing something like this?
My husband used to wake up in the middle of the night, thought it was morning and got dressed and ready to go for the day. It hasn't happened for a while.
It actually happened once or twice not long after his EVENT and while he was still working, but he was going to work in the middle of the night back then, so getting up an hour or two early and taking a shower wasn't all that weird. But I now know that it was a symptom of dementia. Now if it isn't daylight he doesn't get up, but I doubt if he is looking at the clock.
What you have happening is part of Sundowning. A confused sleep pattern is a symptom of dementia. You need to report it to his doctor because this is one symptom that will make YOU very sick. I'm not dealing with this, but I understand that there are drugs that can help. And since it is early in the symptom, you might want to deal with it right away.
My husband used to wake up in the middle of the night, thought it was morning and got dressed and ready to go for the day. He would turn on the computer, fix a pot of coffee, drink the coffee and play spider solitaire until I noticed that he was missing and went into the den and told him it was 3 or 4 or whatever, and talked him into coming back to bed. Now I am more aware of his movements (it is like having an infant and your ears hear better while you are asleep) and I can stop him before he puts on his clothes now. It happens about once every couple of weeks still.
There was only one time he tried to leave the house and it was different (HE was different) but I talked him out of it. That was over 6 months ago.
As Starling said, you will want to report it to his doctor for medication.
PatB, thank you SO much for the graphic description of the surgery. I'm still trying to recover from the other thread where people were talking about booger-slinging.
I hope to high heaven they didn't describe the surgery to you until after your son had it done.
Speaking of which, my spelling checker wasn't much use in choosing between bugger and booger as the correct spelling (one would wish to be correct when spelling this word), so I tried google ... and found:
http://www.pickboogers.com, "Virtual Nose Picking."
I went to the main page, but did not have the courage to hit the "Pick a Winner" button. (Anyone who does try it -- thanks, I don't need to know.)
At the bottom of the page, it informs me that PickBoogers.com is part of the Stupidness.com network.
Sometimes when I come home from work I ask DH what he did while I was gone. He'll tell me how he cleaned everything up outside. Actually, he didn't do anything. Do they think that they had done these things?
It depends on how far along in the disease they are and their personalities. There is a good chance that they actually do believe that they did those things. My husband also had a sense of humor so somtimes it was hard to tell when he was serious and when he was pulling my leg....
They may actually be remembering another time when they did that or combining memories. As the brain misfires, it is hard to tell from our point of view.
They still need to feel useful and appreciated though so it is best to say thank you and then go do what you have to.