This last week, I've noticed that DH does not know what year, month or day of the week it is. Has no idea the date. I asked him what he thought of our new president. He got angry with me ans wanted to know wny I was asking him those kind of questions.
He's also very concerned about a pile of leaves and branches against a fence across the street. That family has lived there for over 40 years. He has no idea who they are and why they left that yard waste there. He keeps asking me if there is a law against them leaving that mess out there. The waste management truck will be here later this week. I finally waited until he'd left the room and then I closed the blinds. Didn't do too much good. But at least it stopped his concern for a little bit.
He was trying to take a plate of food downstairs this afternoon. I noticed that he was all crouched over, leaning against the wall like he was afraid he would fall. Later,he asked me to carry down a glass of juice for him. He went downstairs the same way--crouching and leaning against the wall. He was emptyhanded.
I notice that when he gets up he takes little shuffling steps.
What does this mean? Is this just part of the normal progress of the disease or should I take him to the doctor to be looked at. I asked him if he was stiff and sore and he said he wasn't.
I don't want to be a worry-wart but I don't want to neglect something significant, either.
Mawzy I'm afraid this is part of the downward spiral. They lose space perception and are afraid of falling. Many times they won't walk over a dark rug because to them it looks like a deep pit. My husband will sometimes pull both legs us when the aides attempt to walk him. Other times he is up and raring to go- so it probably isn't something physical. Sorry
The other day my DH asked me where we were, and it folloed me but I realized it could be the loss of time/spatial memory. Later it passed so it was okay. This thing amazes mes sometimes. Shadowbaby.
Mawsy, my husband steps up onto the rug as if he is stepping up on a curb. He has almost NO depth perception. His walk is almost a sideway suffle step..rather than one foot in front of the other. He shuffles to the left with his left foot - to the right with his right foot and it takes him forever to get anywhere. I was told by his doctor(s) that this is definitely related to the disease. Just one more little thing... With all this being said, he insists on going up and down the stairs ..Our master bedroom is on the first level, but he likes to nap in a guest room upstairs. At night, he moves from our bed to the upstairs bed and back to our bed hourly. He holds on to the railing with both hands as he goes up and down. Another incident of "picking my battles". I gave up trying to keep him off the stairs a long time ago.
this week my wife got dressed for church three differant times thinking it was sunday,today she wanted to know where the other dog was,we have one,she thinks there are many differant people coming an going in the house who are stealing her dog treats,she's killing the dog we have by giving it treats all day long an then goes ballistic if I say anythingh about it,this ain't gonna be fun
ol don-be glad your wife is giving treats to the dog. Several posters have caught their LO's eating the treats themselves. Could you hide the treats so you don't have an obese puppy on your hands.
Mawzy---Been seeing the same type of changes to a lesser degree. I'm afraid that your husband's unsteady walk is because of A/D. Even if it is...There is no reason to surrender quietly. Consider talking to your husband's G/P or Neurologist and see if they will prescribe physical therapy for balance and to keep him from becoming a fall risk. It has helped Charlie who has just completed his 1st month and received approval for another. (Think there is a 2 month maximum)
Overnight in November 2008 my DW went from being able to walk three miles, unassisted, at a pretty good clip, to needing to hold onto my arm for balance much of the time. After three falls within a week's time about six or eight months later, she became very cautious, requiring assistance with all walking, and would "test" any change in floor color or texture with a toe before placing weight on it. Over about the past six months her steps have turned into a sideways shuffle that advances her only two or three inches per stride, with her right foot in front always and transferring weight quickly from her left foot to her right. (Our son says it reminds him of a surfer doing a "goofy foot" maneuever.) She suffers from "left side neglect", which I expect accounts for her favoring her left leg. At mealtimes she rests her left hand in her plate, seemingly unaware of its existence, and once she has shoveled the remainder of her food over to the left side of her plate, it also no longer exists as far as she is concerned. When transferring into her wheelchair, she faces the chair, reaches over and grasps the right armrest with her right hand, which is correct up to this point, but then invariably tries to back up onto and sit on the left armrest, so I have to block her with my leg and use my hands to position her booty in the chair.
Gourdchipper, years ago when my dh was taking the MMSE test and more extensive, I learned sometimes demential patients wont see or recognize one side or the other, just as your wife. They said that when they drew a picture they would usually draw half and not recognize the other side of the picture. We have not experienced that yet. Your wife seems to really adhere to her whole self ignoring the left side of her body.
swarfmaker, my DW was diagnosed with "probable AD" some six or eight years ago, and had begun experiencing classic AD symptoms with short term memory loss, spatial orientation problems, etc. long before the problems with walking showed up. She is participating in a Late Onset AD Genetics Study, since her two next younger sisters also developed probable AD symptoms at about age 75, just as my wife had, and she was interviewed rather extensively by Dr. Neil Graff-Radford at Mayo in Jacksonville when enrolling in the study.
Yes, she has experienced jerking that I have assumed is myoclonic, although her neurologist has never definitively identified it as such. And yes, it seemed to improve after she started on twice daily 1000 mg cinnamon capsules and Sunshyne's MCT Fuel/MCT OIl regimen back in early December. She still occasionally experiences a bit of jerking while still in bed during the early morning hours -- typically after a potty run at say 5:00 a.m. and it might go on for fifteen minutes -- but rarely at other times. The earlier jerking seemed to originate in her left arm and was troubling to the point that she sometimes even upset her bowl of breakfast cereal or threw a glass of water she was holding.
Prior to starting the cinnamon and MCT business she'd also suffered three brief fainting/seizure episodes where she'd slump to the floor (we usually caught her) and become non-responsive for a few minutes, with sweating and drooling, but then recover and have no memory of it. The neurologist was concerned enough about those that he ordered an EEG and MRI, which revealed nothing really, but he said that if these continued he'd be inclined to prescribe some anti-seizure med -- his concern being that she might be injured in a fall caused by such an episode. No more fainting/seizure episodes until this past Tuesday, when she lost consciousness at the breakfast table, and was "out" for about fifteen minutes, but we were able to support her and move her to a recliner.
GC, I'm so sorry. When my husband had an episode, they put it down to a possible TIA, while admitting that they didn't know for sure. He's had small strokes now too. Again, I believe that they are AD related as well. He occasionally has the jerks on occasion as well, but his seem to be in the evening. His perception seems worse as well. He now feels for his chair, the bed, and the toilet before sitting down. It is heartbreaking to watch them slowly deteriorate before our eyes.
Gouardchipper, exactly like my Mom did. She would go to sleep at the table and her head would go in her plate, or fall off the chair if someone wasn't there to steady her. Several times over several years she would just topple like a tree with no warning and scare everybody to death. Either forward or backward and never broke any bones doing it. I had the EMT a couple times and took her to the Emergency Room a few times and one of those times she fell asleep waiting in the ER and the Nurses couldn't rouse her for about 15 min. or so. I think there was blockage somewhere with her oxygen because tests never showed anything. The last year we just made her comfortable until she woke up.
I was not aware of favoring one side of the body over the other. My husband had a stroke 27 years ago that affected his left side(he was left handed). He recovered for the most part and worked 20 more years at his job as a sandblaster. He did not have fine motor skills in his left hand and taught himself to do detail work with his right hand. Not that FTD and PSP have hit him, he is refusing to use his right side. His right arm and hand flops uselessly at his side and he does not like for it to be touched to be washed or put through his shirt sleeve and he fights putting much weight on the right leg making it difficult to get him in and out of the shower. Strange.
I have noticed lately that hb seems to forget more, is more withdrawn, and confused if he doesn't sleep enough or gets stressed. Today hb had his neuropsychological testing and the results were not good. He has gotten worse - now shows signs of dementia. In January the neurologist said there was no sign of dementia yet thus the aMCI diagnosis.
My hb for the first time I think really faced the situation. While waiting the doctor gave him a form to fill out that would show his level of depression. He answered the first 5 and in tears said he couldn't do it. I told him he could, that he needs to think about how he really feels - which answer fits how he feels. He was still working on it when I went in to talk with the doctor.
Found out after the testing done March 08 we were suppose to have a consultation with the doctor to go over the results. That never happened. We just happened to get the results in July when the doctor in Nevada printed it out. The doctor today said we would be getting a call to meet in 3-4 weeks to go over the results of the testing. Art remembers a lot of it. Said at one point when he realized how bad he was doing he started crying and the doctor had to ask if he could go on. He said he would go on to see how bad he was. My hb is one that rarely ever cries - he has always been, to a certain degree, detached from his emotions.
He hates these test cause they just show him how bad he is getting and I think depresses him more. I am going to contact his PCP and to see if I can go ahead and double his Prozac. It was to be done in March but he did not change the directions on the renewal. I am going to work on getting the documents ready for SSDI so after we see the neurologist in July we can file. Hopefully she can tell me who SS are to contact. She said in January the PCP does. The PCP says the neurologist does. Wonder if the neuropsychologist can?? I have to find out if we can get a copy of the MRI and report that was done in Vegas. His PCP says he could not find it in his file but last January the neurologist said she saw it.
I was IM chatting with a sister this evening when she asked how he was doing. I told her he had the testing today and officially received his death sentence. Unlike cancer, there is no treatment or remission. She didn't say another word about it. That sure stops them in their tracks!
Me - I have to keep strong to support him. Seems my whole life has been doing that. He apologized today for putting me through this and I said something like it is not the first time - we made it then and will now. Actually, this is the last place I want to be. I know many of you identify with those feelings.
I certainly understand. I was talking to a young fellow today about a white-water rafting experience we'd had less than 10 years ago. He was amazed. I was too, just thinking back on that fun day. Seems like all we do now is sit and he asks the same questions over and over again. I try to be nice and respond--changng my words to maybe make it easier for him to understand. Some days I think I'll go crazy.
He knows something is really wrong but he won't admit he has a memory problem. Says he's 83 yrs old and has plenty to forget. Just dismisses. Yet, he asks what every pill I give him is for.
Today he asked me if I would always be with him and take care of him. I asked him if he needed me to take care of him and he said he did. He said he was afraid to be by himself. He said that yesterday when grandson drove me up to the market. He said "don't leave. I get scardd when you ard gone." I said "Come with us. The outing will do you good." He wouldn't go. I was only gone for perhaps 30-40 minutes. He was so happy to see us back.
Charlotte, you can cointact Soc. Security and start the application process. They'll send a bunch of release forms for you/your Dh tosi=gn allowing them to collect any and all documentation they need from the various Drs,. You need to provide the names, addresses, and dates when he was seen, and any results your aware of. You don't have to chase this down. Soc. Sec. will, with your permission. Be thorough.
Charlotte, I am pretty new to this site, but I can so relate to the feelings you are having. My husband was diagnosed with EOAD this January. After looking back we think he has been suffering with this for about 2-3 years. He has been on Aricept since Jan and it was helping in the beginning. Now, four months later it seems that is it not working as well. We are seeing more memory loss. It is really disheartening to see this happening. It scares me to have so much put on me when he was always the strong one in the marriage. Now he doesn't even know where he is going when he leaves a room. I am at a loss as to how to handle this. I am going a minute at a time. I am constantly second guessing myself and my decisions. It seems that when we notice more memory loss, I get sharp with him and then I get scared. This is so not suppose to be happening..... I know we are all going thru the same thing, but it sure sucks. No amount of post or talking or crying makes this easier for long. I don't mean to be a downer, but I am having a bad day when I see the man I love becoming so different. He is such a sweet man that has always done for others. Now there is so much he needs and not too many to help him. Life can be so sad......
Please give yourself some time. It hasn’t been that long since the diagnosis. When DH was first diagnosed, I cried for months. After some time, the tears have mostly dried up. (I had a good cry today, though, when I was updating my sister with an e-mail.)
Things are moving very fast for you, which doesn’t leave much time to get your feet back under you before something else happens. Of course you are having a hard time. Anybody would be having a hard time. But hang in there. As somebody else said, we’re all in this leaky boat together. I wish I could say that it gets easier. But somehow it does get more manageable, as you learn more about the disease and how to deal with it.
I saw a book while at a book fair tonight with my grandson. It's title was something like, "Happiness, extra" I thought to myself, so that's what's wrong, no one told me that happiness costs extra..........................
Mj1, I know what you mean. In our case, my wife was the strong one, running the house, social chairperson, equal breadwinner. Now she can do nothing, not even talk to me so as to be understood. Its all up to me, and sometimes I not only get sad about it, but I get mad too. Being mad at the situation seems to not allow the tears to form, so I like it better. Don't get me wrong, I'm not mad at her, I'm mad as h--- at what happened to us. Hang in there, 'cause there will be days when the sadness stays away for one reason or another, and you feel somewhat 'normal' for a while. This site is a Godsend.
Mammie yes we can all relate and be your support. But in your house you are the one with all the reponsibility...doing everything, making all the decisions! You are the one who remembers the wonderful, strong man you married who now seems like a demanding baby! It is overwhelming. I am sure you are doing a great job.
Make sure you take care of your self and if you hit the wall, cannot not stop crying or feel very depressed seek help. It does suck!
I thank all of you for your reply's. It does help. I do a lot of research on this subject and think I am informed as much as possible but no book, movie, or anything else comes close to what we are all experiencing. I can only imagine what our loved ones are going thru. My husband and I have decided that we need to move to near his family for support. I was doing this for him and he was wanting to do this for me and our son so that we could be near family after he was gone. Today, after my posting, we went to see one of our sons that live near us. On the way home my husband and I were talking and he said something that was really potient. He said "I do at least know my way around here. I would be completely lost if we move". This got me to thinking about his needs more. He was finally thinking of himself instead of the rest of us. That was a good thing. It gives me some insite into his thoughts and needs. We have decided to take our home, which we put on the market for sale two weks ago, off the market and stay here. We will make the changes we need on our home which is half-way paid for, work for us. I know none of you probably understand what part you all played in this, but you all helped us make this decision. Thank all of you for being here for each other. Until later,,,,,, good night.....
mj1, keeping our spouses in their routines and surroundings helps them to not get too confused and able to function for themselves a little longer. I think you will be happy with your decision. You are fortunate that he is still able to discuss his feelings with you. Every day or week you will notice him losing a little bit more of himself. Whether it is loading the washer, or folding clothes, or unloading the dishwasher.....you just slowly pick up the slack without mentioning it, and he'll think you have always done it after a few days and he won't feel badly that he can't do that thing any more. My husband has now reached the point that he can help me dress him, put food on the fork and get it to his mouth, and walk (shuffle, mostly). And he didn't realize that he was losing those abilities because I never mentioned them. (I won't mention how many days I re-ran the dishwasher after he went to bed after taking the dirty dishes out of the cabinets that he put up dirty!) We cope...and come here for comfort and instruction and love and to rant and giggle.....our family is here now...((HUGS)))
I was talking to my sister today and she said the way Art told her he seemed relieved. Relieved because now he can apply for SSDI instead of having to job search every week for his $159 in unemployment. He knows no one will hire him but he has had to do at least 3 every week since last November. This morning he again made me promise to not kill myself caring for him like his mom did caring for his dad (who still is alive 8 years after his mom died suddenly). I told him it depends on the VA - how far along he will have to be to go into the Alzheimer unit.
I am trying to up the coconut/MCT oil. He gets diarrhea so easily since his surgery for GERDS a few years ago, that I have to be careful. I have started buying coconut cookies which he loves, so hopefully he will get a little from them. The macaroons are so good, I have to slap my hand not to eat more than one!
I told him just cause he has dementia does not mean we have to stay put. We have the consult with the neuropsych dr, the neurologist in July, then apply for SSDI. By summers end we may be able to head south for the winter and/or get workamper jobs as camp host where the job and stress will be low. They are always looking for camp host at the Oregon Dunes year round - that sounds fun.
Got a call from the neuropsych and he wants Art to come back in for some more testing, so we go in next Tuesday. Now we will spend the next 5 days wondering what he is looking for?? Oh well.
Charlotte, ASK him what he is looking for. Depending on his answer you can go forward with the tests or decide enough is enough. My husband has a diagnosis. We are not doing any more tests. But if the neuro thinks that there is a test that needs to be done, he should also have a valid reason for the test. And valid means that YOU think it is valid.
I am not sure if he is going to do more testing or if this is for the consultation. When Art got home today it sounded more like it was for the consultation. We need these results from the neuropsychologist and the upcoming neurologist appointment if he is to qualify for SSDI.
By the way, also have all of the doctors write letters with the diagnosis on it for SSDI. My understanding is that the more info you provide, the easier it is for them to say yes on the first try.
At this point we are also waiting for a decision from SS. We had to go to two of their doctors for their opinions. The last doctor said he has no doubt that the issues that we are claiming are legitimate. I hope that means we will get a good report from him. If not I guess we will be among the many appealing the decision. If the doctors would just spend a few days with our loved ones with this disease they would see just how much it affects them. Then if they still think they can work, give them a job at their office and see what happens. I bet there would be a lot less turned down cases. No better way to see if the claims are real or not.
The decision maketrs for SS are not the Drs. Soc. Sec. Admistrative employees collect all the data(from the Drs. etc.) and put it through their magic formulas. After you get on Soc. Sec. Disability, you can try a trial work period, if you find a job you might be leto do despite your qualifying disability. There are no inbcomme limits uring this trial period, but once it's done, iof you've proven able to sustain "significant" work they can drop you. "Significant" work can be figured by earnings (not specified but gross--before taxes-- less than you Soc. Sec. award which is net) or it can be "substantial" work. "Substantial" or "significant work can be more than 20 hours a week; it can be being a volunteer driver taking people to Dr. appointmernts for the Red Cross (2o hrs a week---could be a part time cabbie). The SS Admin. is very secretive about the limits on this. I've run a foul of it. Came out okay though.
I definitely experienced a change tonight. My husband loves ice cream, however, we really don't have it that often. I decided I would stop by Dairy Queen for an ice cream cone. A mistake I won't make again, my husband has forgot how to eat ice cream. As I was driving home, I looked over & he had ice cream dripping everywhere, he wasn't licking the ice cream just letting it drip. I know it was only a month ago that he had a cone with no problem. Have you ever tried to drive holding one cone & trying to lick another cone to keep it from getting on everything? It is not easy...we both had ice cream all over us. Next time it will be ice cream in a dish for him.
oh that blank look just saw dh at the nh tried to feed him wouldn`t look at me no eye contact at all, keep looking at daughter, he told me i was pissing him off, sorry about the bad word but he said it, took him outdoors to sit in the garden for awhile didn`t last long, didn`t want to talk and what ever he said couldn`t understand him, the more i see him the more i know i did the right thing in placing him
When hb went in Tuesday to the Neuropsychologist, it was not good. He wanted to do more testing to further try to see what areas of the brain are affected. After an hour hb stopped it. He said he broke down in tears (rarely cries) and told the dr no more cause he can't remember. He had him putting pictures in order and he had two wrong that he couldn't get right. Then there was a test he was doing last was a puzzle or something. Art could not understand what he wanted him to do with the pieces. That is when he said he was done. He offered to set up another appointment to come back to continue but Art said 'no'. He says he doesn't need any more testing to know he now has Alzheimer. It is like he has given up. I am letting a few days go by before I bring it up. I know the timing of getting the DPOA which means facing it and the additional testing was stressful. When he gets stressed, confusion sets in.
So now we wait to see the conclusions he has come to. It makes no sense: his short term memory is not good but he watches the GSN show 'Chain Reaction' and usually gets the words before even I do. He use to refuse to watch any shows like this but now likes them. Anything with reading he avoided like the plague.
Has any of your spouses been through all this testing?
My husband has been through it 4 times and it exhausted him. He could not do a lot and some not at all. I don't think he will have any more other than the short MMSE test. He is going to WVU next week for his annual visit and we will see what the Doctor says.