I have noticed a few things over the last couple of weeks that I hadn’t noticed before:
1. Driving home in the car with some fresh cooked chicken the other day she couldn’t smell it. 2. She isn’t straightening her legs when she walks and she is walking very slowly. 3. She is very nervous in the car. Seems like she is afraid we are going to be in an accident all the time. She holds onto the handle above the door.
These are all new things I have not noticed before. I have seen discussions here about number 1 and am going to go back and read them.
Number 2 concerns me. Because it appears to be a physical problem I am concerned that it may be a sign that she could be moving toward stage 7. Has anyone else noticed this in their loved one?
As far as number three is concerned I think it may be because her reaction times have slowed down and she may not feel safe. What do you think?
Thanks again for everything everybody does on here.
JimB
PS One funny thing she did. Yesterday when we went to dinner with some friends she told them that I am always checking her seat belt in the car to make sure she has it on. And then she told them that she thought I was really just playing with her boobs. She said it a little on the loud side and then laughed and said it was ok because we were married. I was able to hear some giggling going on around the dinning room. But it was funny.
My husband does the same thing in the car as if we are going to get in an accident any second and he is so hypervigilant that he gives me a running commentary all the time when we are near any other vehicles. He says " watch this or watch out for that guy " to the point that it is distracting so I put on a talk show with the volume up a little for a little white noise to drown him out. Oh , I am so bad! Ha ha. Gypsy2
My husband also directs me while I'm driving to look out for things. I think it's because his depth perception is messed up and he "sees" other cars as being closer than they really are. He always makes screeching noises as in pull into a parking space, as if I'm about to hit the next car. It is so dramatic, it's funny! I also think that he's not used to riding as a passenger, and things look different from that seat. I always thank him for warning me about the other cars, "helping" me drive. I'm just so glad he's not carrying on about giving it up anymore.
My DH lost his sense of smell a while ago, he also walks very slowly, and definitely directs my driving. It's so annoying. I've been driving for many years and actually put in 300 miles a week to and from work. But Gypsy2, like you, I turn up the radio and sing along so I can't hear him. It stops me from being mean and berating him. Like Joan said, "...sometimes I wish I were nicer."
I am glad to hear the comments about "helpful husbands" when driving. We have the same thing going and I tend to take it personally. I'll try to dial down a little1 Thanks
My main concern is that she isn’t straightening her legs when she walks. She is kind of shuffling her feet. What I want to know is if it is a mental thing or a physical thing. She has been on her meds for a year and a half and I am wondering if they are beginning to no longer work. I have read they generally only work between 6 months and 2 years and then things start to speed up.
Do you know of a site with accurate information on the meds? Kathryn has all the signs of stage 5 and a few of stage 6 but not all of stage 6. Could this be one of the signs of stage 7 beginning?
Was told by a wise old psychologist after I complained about "helpful husband" while driving, of him shouting at me to be careful if I come near with scissors or knife and anticipating fires if I light candles...that not only is there a perceptual problem of things being closer than they are but also an innate behavior of protecting themselves from harm. Survival mode.
Glad to know I'm not alone with the "helpful driver" in the passenger seat. He too holds on to the door and gives a running commentary on my driving and what I need to do next. I usually thank him for his help but sometimes it gets to me and I remind him sternly that I have been driving many years with no accidents. I also tell him not to worry, that I know I have precious cargo in my car (him) and I would never do anything to harm him. That seems to make him feel safer for a period of time.
Jim, my wife, who used to walk everywhere (she once walked almost 8 miles round trip to get tickets for a show rather than drive), now walks with a shuffle and very small steps. She also has trouble standing up straight. Except for short distances around our apartment I hold her hand everywhere we walk, particularly outside on uneven areas. She has fallen a few times, but not recently. She is in stage 6 and showing some signs of progression. Regarding smelling, she has always had a poor sense of smell, so I can't comment on this. In the car she seems relaxed, but occasionally will say "look out" if she thinks I am too close to another car.
He started the shuffling after he was in the facility so I was able to ask the staff. It is a normal part of the disease. He also started walking tippy toe (also normal). There also comes a time in the disease where they start stiffening up which makes it harder for them to walk (if they still are).
Sense of smell is affected by the disease and is also affected by age. This also affects their taste buds. One of the last sensations to go is "sweets" and this is one of the reasons why they tend to go after sugary items.
He always gave me instructions while driving - it did get worse with the disase and he got to be a lot more sensitive about the "crazy drivers on the road". This one I never got an explanation for that made sense to me but I suspect is has to do with the slower response time that they have.
As with anything in the disease, talk with her doctor and get it checked out but realize that it may just be part of her progression in the disease.
...[sigh]... I was backing up to get to a great parking space today. My husband started screaming at me about the car behind me. ...[sigh]...
I knew where the car was. It wasn't behind me because the driver saw I was backing up, and didn't turn so we would be in the same isle. He knew where I was. I knew where he was. And both of us were acting safely. I backed up just a touch more, not even coming level of where he was waiting, and got into my parking space. He made his turn once I'd stopped and went on his way.
...[sigh]... Yup! I ended up screaming at my husband. Most of the time it all just annoys me. If I had ever done any of the stuff he constantly does, and always did constantly do when I was driving in the past before dementia, he would have had a major hissy fit. This time, it qualified as dangerous and he would not stop.
He ended up with is usual complaint. "You think you know everything!!!"
One of the reasons I think he had dementia before his major event in 2003 is that he used to say that exact complaint back in the good old pre-dementia days. I never claimed to know everything, but he always knew everyone's job better than the person who was doing it.
One of my husband's first symptoms (although I didn't know it at the time) was a loss of his sense of smell. Now he's complaining that things don't taste right.
As for the "helpfulness" when I'm driving, it's "driving" me crazy. Whenever I turn on the turn signal to change lanes, he immediately tells me the blinker is on, and the other drivers will think I'm going to turn. Since not using the signal and not checking for people behind him was one of the reasons he needed to quit driving, that complaint gets to me. But it's not by any means the only one he makes. It's sort of a running commentary on my driving.
Reminds me of my first try at driving our first pickup with my handcontrols. DH was sitting in the passenger seat, where we all know the perspective of where the vehicle is in relation to the lanes is not the same as from the driver's seat. "Stay in your lane." "You're going too fast." "Speed up." "Slow down." "Get in your own lane." "Put your signal on." I pulled over. "What are you doing?" "You drive now. I'll try later, on my own." I did. The next time we went away together, when we left the store, he said, "You drive." and proceeded to get into the back of the truck and lay down. I drove to another town, 1/2 hour away with no problems. More than anything, at that time, I think the fact that I never moved my feet, made him insecure. With my braces off I could have even sat with my legs folded under me and driven. The reason was different but the result the same. Drives you nuts.
Hi JimB - my husband is doing the exact same shuffle - small steps - and often angled forward. He fell on the sidewalk yesterday (caregiver was there) and wonderful people called 911. Luckily he's fine. Re the meds, mine was on Razadyne and Namenda for nearly 3 years. About 6 weeks ago, the neuro suggested we try to take him off them. There's been absolutely no difference in anything. I think we were lucky to get a good bump for about 18-24 months.
Re the "helpful" comments on driving--one reason I don't take it personally is that when we go out with another couple, he does the same thing to other drivers.
Re the loss of sense of smell--that was my husband's first symptom, waaaaaay back, probably a good 5 years before dx. He noticed it because he couldn't taste his food. Fast forward to now, 10 yrs later, he's mid-stage in the disease. All of a sudden, he keeps saying food tastes good. I can't believe that he has regained the sense of smell/taste, I just think it's his brain playing tricks, once again. At least this time, it's something positive!
Dh's main comment while I'm driving is an almost panicky "Don't go so fast!" Apparently it's scary for him, even though I never drive VERY fast. When he was still driving he would somtimes go quite slowly, that got on my nerves. So now when the speed disturbs him, I just say "OK" and slow down a little.
My DH is the same. He ALWAYS thinks I am speeding and will lean over to look at the speedometer to make sure. It's just a sensation he has - that everything outside is passing by way too fast.
I am thankful that driving doesn't bother my DW now, but, I have the same problem that Marsh describes. We went to the Neuro last week for a three mos follow up and also because my DW has progressed rapidly recently. Like fell off of a cliff. Anyhow, she has gone from a stage 3/4 to stage 6 just in this year. Really bad off. She is also falling and shuffling her feet, which, the Dr said is caused by AD. She forgets that she is supposed to lift them up before she takes a step. Took a pretty hard fall outside Cracker Barrel yesterday, but, didn't do any damage. Sure gets peoples attention tho and they are very kind and helpful. The world is full of nice people. Just a matter of time tho until she hurts herself. I have also realized that it is not possible to keep someone from falling completely. I always hold on to her, but, she can fall anyway.
Joan: I forgot to mention that we have a brand new walker and a cane that the physical therapist showed her how to use properly. But, she absolutely refuses to use either of them. She has just recently started holding on to me. For a long time, she didn't even want to do that.
I would appreciate any suggestions you, or anyone, could give me on this matter. I think she feels like she is giving up some of her freedom or else vanity (shame on me) has set in. Either way, she is really dead set against using the walker.
Try reverse psychology - tell her by not using them she is giving up her freedom. If she depends on you, that means she can only walk around when you are there.
Charlotte: Your are right - she does depend on me, but, trying to reason with her is impossible. The things I think are simple and that anyone would understand, are incomprehensible to her. Did I forget to say that she can be quite stubborn at times. Always has been. But, thats one of the reasons I married her.
I still think she is beautiful and I love her dearly, but, sometimes I would like to kill her. Not literally. That is just an old southern expression.
Hope you have a good day tomorrow. I enjoy reading your posts.
dean, my dh will not use a cane. Sometimes he will use a walker when he has it right in front of him. Sometimes he forgets how to use it and jerks it around, on 2 legs etc. When he is doing that I think it is worse than not using it at all. I had the same problem with my Mom and I think it is quite common unless they completely lose walking without one.
dean can you try telling her to use it because you're hands are full (busy. Of course you have to make that true, or appear to be true. I use braces and crutches to get around and had to just keep telling DH "I can't help you do it. Use your cane or walker." "I guess you can't go if you don't use your walker," and put it in front of him. Try, "You take your walker and you can help me get everything in one trip." or "I need you to push the walker to get the pie in while I carry the ....." Give the use of the walker a positive value aside from why she neds it.
carosi, you are assuming they can reason and they understand what you are saying. Sounds like dean and I are at about the same stage. I do okay during the day but starting about 6 until I can get him in bed usually about 10:30 my live is miserable. I tried seroquel and it only makes him worse. He is up and down all night getting into things. When I stopped it he usually sleeps all night. He is in bed now and I will regroup and get up in the morning with a positive attitude. I can do this one more day and then one more. Sorry, I don't like to post unless I can be positive. But , I did want dean to know that I understand.
Thanks ladies. Your input and suggestions are always appreciated.
Bama: I have the same evening problems. It is difficult to get her to go to bed unless I go with her and I don't always like to go to bed as early as she does. Oh, if I can just get her in bed asleep for an hour so I can read the messages and be alone, it is so wonderful. She is now on 1m atavan twice a day that helps. If I give her the evening med about 6:00, I can sometimes get it done.
I think it is just a matter of time until she falls and really hurts herself again unless I can use some of you ideas. Needless to say, I will try them all.
Also, one last thing, - You ladies are just to nice. None of you made a comment about my reference to vanity and stubbornness. I just thought you might not have had to deal with them.
i agree that sometimes we just have to bite the bullet and let them know this is how its going to be, if our spouses are in peril of falling and injury then another solution must be made asap to keep them safe. walkers, transport chairs, canes, whatever works in your particular circumstances. my DH is having a hard time knowing to push the walker and so i have to pull to show him how. i think we started late on this as he isnt getting the hang of it much. transport chair or sitting on the walker seat would be next choices. if they are non compliant with regards to safety then yes placment may have to become an option. not what we want to hear but we have obligations to keep them safe if they remain at home. divvi
Okay, I bought the transport chair. Pulled a muscle in my left arm trying to adjust the foot pads. When will I learn that I don't need to be laying down on the floor trying to loosen a thingamygig with a wrench. Now the left arm can balance out the hurting with my right arm. Now, can any one tell me how to push the chair and a shopping cart at the same time. This should be interesting to watch. Maybe push him a few feet and go back get the cart and alternate the pushing. I guess I could leave him at the end of the aisle and go down and back up the next aisle. sounds like a plan.
We use a wheelchair with a basket at Walmart. Only problem is that just about the time we get the basket full, she has to go to the bathroom. Then you have to unload the basket so she can get out and back in the wheelchair.
Oh Well? Caregiving will force you to acquire patience if you don't have any, which I didn't.
Bama, Is it possible to push the chair with one hand and pull the cart with the other? That's what I used to do when I needed two carts for groceries. But there would probably need to be a bar between the handles somehow.
Bama, when Claude was still able to walk with the rolling walker and if I HAD to take him to the store, I would having him sit on the walker at the end of an aisle. I would run down and pick up what I needed and then come back and move him to another aisle. As long as he could see me, he was okay.
A wheelchair with a basket is the best but for some reason the stores don't have many of them. The electric scooter would have been perfect but he couldn't remember how to work it.
dont laugh, i have one of those stretchy half- hooks on both ends and hook it to the wheelchair handle and then the shopping cart behind me while i push. it follows behind and easy to unclip when i get to the isle then i leave the basket and DH in chair while i fill the cart from the isle. i dont push them both the whole isle! as long as he can see me hes ok to sit! the things we do... if they see you do this usually a worker will offer to pushyour basket while you shop..:) at least here they have! i politely say its working fine for now but i may take them up on it at a later point! i get smiles. :) divvi
Anchor 20, I am with you on the problems that you are experiencing. My wife Mar is going through the same symptoms IE scared all the time, no sense of smell and petrified in the car. She used to love going for a drive, but now all she does is sit on the edge of her seat like she is petrefied. I believe that she is early stage 7, last MMSE she scored 12, but the nurse felt sorry for her and gave her two right answers. I know , I have been with her for every test an usually bite my tounge throghout the exam. Our Dr. has stoped talking about progression because I think she knows more than she wants me to here. I believe the Exellon and ebixa are a wast of money now as I cannot see any improvement in her abilities. I am of the opinion that there is nothing we can do at this stage but to reasure them they are loved, safe and comfortable. Even this some days seems to be of no comfort to Mar. I keep trying as long as I have breath left.
I forgot about the cant when they walk. Mar also walks bent over like she has a back problem. Also small steps and very frail about all functions. I believe this is progression of the evil disease.
selwynfarmer: I hear you loud and clear. Before our dx 2 yrs ago, I would not have understood what you were saying even tho, like everybody else, I have observed friends and family with Alz. We are at stage 6 which they are calling severe. I hate to think about stage 7.
I survived Walmart yesterday thanks to Divvi and the stretchy cord.It took some experimenting but I found that lacing the cord through the front of the cart and then hooking the ends to handles of the transport chair worked best. After going to different departments of the store first and then to the groceries I could park him at the end of an aisle in the chair and use the cart. Wasn't easy and it took twice as long to shop but we have a full refrigerator now. That dang chair is heavy and not easy to lift in and out of the back seat. Oh, I didn't get any offers of help but people sure got out of my way when they saw me coming.
Bama, do you have a wheelchair or a transport chair? I can't lift a wheelchair into my car but my transport chair only weights around 20# and is very easy to load and unload. The transport has all small wheels and no large wheel.
haha. aww bama! i bet that was a site to see you towing like a tugboat:) well yes its slower and depending on the carts you have some finigling may be needed. but you CAN get some groceries done even if taking a while longer. well- we have to get very creative when having to accomplish every thing with a large toddler in tow. i am proud you did it!! each time will get easier once you got the hang of it. not the best solution (leaving them at home with someone to watch! would be best, ) but i know thats not always possible. but once you hit the checkout counters they takeover from there =i let them empty the cart to the counter and resack and load in my car never touching a thing til we get home! most of the time the guy taking out groceries will help load your transport chair too. i give them a couple of dollars and they know you next time:) we do what we gotta do! divvi
Imohr, I have a transport chair and it is pretty heavy.Lifting anything heavier than a bread box is hard for me.LOL Divvi, At my Walmart there are no boys taking out groceries. I did leave my groceries with our friendly Greeter to watch until I could put him into the car. It was a "pain pill" day after I got home. Really have to be hurting bad to take one of those little pills. And yes, we do what we gotta do.
Bama, my Walmart has a sign on the entry door saying something to the effect that they're happy to assist disabled customers. You might want to check on that. It may be you have to ask for some assistance when you go in, but heck, asking for help has to be easier than what you're doing now.
That stretchy thing divvi put you on to is a bungee cord. (-:
selwynfarmer: Thanks, Sorry it took so long to get back with you. My father got some kind of an infection and I have been really busy taking care of him. I haven't had a lot of time to do much between taking care of my Father and Kathryn too other than just take a quick look and then back to them. He is doing better now so things are easing up some.
I hope that Kathryn is not moving inot any of stage seven, but truthfully the stages seem misleading to me. Soounds like Kathryn and Mar are pretty close to the same stage but it is hard to really be sure where she is. For about the last week Kathryn has been ccomplaining that her hands hurt.
I wish their was a set route for this desease. It would make it easier to understand and prepare.