I have a question. My husband had problems with his memory for 5 years. He is now in a nursing facility because 10 months ago he became a different man. All this character change happened within two weeks. He was calling me a different name, he was acting as if our home wasn't his. He was really acting differently. I didn't know what I know now, I wish I did. I thought he was joking with me. But he wasn't. Then he started his packing of boxes and wanting to go home. All this within two weeks. This is my question. I read your blogs and I see you having problems with eating, walking, incontinence , getting them in bed etc. Does anyone have the problem I had, where he just doesn't know me or know where his home is. I know with AD the symptoms can be different, but this happened all in two weeks and you all are talking about years without the same symptom that I have. I am very confused about this. If someone can help me with this question, I would appreciate it.
Everyone is different but I have heard of this before. I would guess it makes a difference where in the brain the damage is occurring at any moment. Perhaps that part of the brain where you and the current home time frame was being compromised. When you go to visit now does he know you?
At some point most patients with AD will not recognize loved ones. Although my wife still seems to know me, I am quite sure she does not recognize our children. There are several discussions about this on this site.
Hi Paula, to try to answer your question..... Lynn would have episodes like you describe, come on very suddenly, most of the time they were due to other elements, such as a UTI infection or fever. Other times he would have episodes where he was very confused and disorientated, more than normal I mean. I was told that at these times it helps to think of the Alzheimer brain as a series of wires, sometimes the "connection" gets a short or a charge and it therefor affects the behaviors, personality.
There are so many different things that happen within the brain that we just don't understand. I think it depends on what part of the brain Alzheimer's happens to be destroying at that moment that causes these changes. The symptoms can come and go for years until ultimately, Alzheimer's completely destroys that area of the brain and those skills are then lost forever. Lynn does still know me and is able to now express to me that he does. He doesn't however know his children at all.... it is all so sad.
He used to know who I was at the beginning of his stay at the facility. I have been there the last 3 weeks and I don't think he knows me anymore. All this within 10 months. I thought the brain becomes damaged from the memory and then goes to the next section and so on. I didn't think it skips areas. This is why it was confusing to me that everyone else had other problems and never mentioned our loved ones not knowing us.
Nice to hear from you Nikki. On my last blog there was a person speaking about incorrect diagnosis on their loved one. They said the doctor said it was dementia and it turned out to not be that. I don't understand what they were talking about. How could the diagnosis be one thing and then be a different one, and the person was getting better. Did you read that blog? Can you explain it to me.
Paula, most of us do have times when our spouse does not remember us..... For me, it is just so painful to recall those times that I don't often speak about it. I wonder if that is the same with others here? There are many thread here though that we do talk about the pain we experience when they don't remember us :(
OK, yes I can help you figure that out Paula........ Mman was talking about a woman in his support group..... this womans husband was not diagnosed with Alzheimer's. More important to note, though the doctor did say he had dementia, it was brought on because of his cardiac arrest and coma. When he started to improve in health, it appears his dementia symptoms also improved.
This happened with my Mom as well. She had a massive heart attack and congestive heart failure. She was not expected to live the night, she did, but for a period of time she did have dementia symptoms. Once she started feeling better, her symptoms disappeared. So she did NOT have dementia as we think of it, but her doctors did say she had it. They should have a different name for this phenomenon IMHO.
It is important to note that all people with Alzheimer's have dementia, but not all people with dementia have Alzheimer's. They are very different! My Grandpa had dementia, he sadly could not remember his own family, but he was able to take care of his daily needs.
Have you read Understanding the Dementia Experience? If not, you can find it on Joan's home page... left hand column.... I hope that helps Paula. If not, perhaps Josh (Dr. UY) could explain it better than I.
You did a good job like always. But... know one really knows if it's AD until they have an autopsy, so this is why I asked. Thank you for all your help
I just did a google search and found this article, it isn't as scientific as some I found, but that is why I like it :)
"What's the difference between dementia and Alzheimer's?" It's a common question, and doctors are some of the best at confusing us. Physicians seem to prefer the word "dementia," possibly because Alzheimer's has become such a loaded word. "Dementia" somehow sounds less frightening to many people, and now even the experts have started using the words interchangeably.
They aren't interchangeable. Alzheimer's Disease and dementia are two very different things.
Dementia is a symptom. Pain is a symptom, and many different injuries and illnesses can cause pain. When you go to the doctor because you hurt, you won't be satisfied if the doctor diagnoses "pain" and sends you home. You want to know what is causing the pain, and how to treat it.
"Dementia" simply means the symptom of a deterioration of intellectual abilities resulting from an unspecified disease or disorder of the brain.
Alzheimer's Disease is one disease/disorder that causes dementia. Many other illnesses or "syndromes" can also cause dementia. Parkinson's Disease can cause dementia. A stroke can cause dementia. Even dehydration can cause dementia.
Many of the things that can cause dementia are treatable, even potentially curable.
If you have taken your elder to the doctor and received a diagnosis of "dementia" you haven't received a diagnosis at all. Unless you know what is causing the dementia you can't begin to treat it's root cause.
If your physician has diagnosed "dementia" it's time for a second opinion. You are probably dealing either with a physician who is not comfortable with the truth, or one who doesn't know how (or doesn't want to bother) to differentiate between all the possible causes of dementia. Either way, a skilled geriatrician or a neurologist who is comfortable with seniors would be a good place to start.
Paula, you are absolutely correct, there is no way to prove it is Alzheimer's without an autopsy. However, a comprehensive, competent diagnostic workup by a skilled physician can pinpoint the cause of Alzheimer's-like symptoms with something like over 90% accuracy.
I like that article. It really makes sense. He had a pet scan a year ago and it said "characteristics of Alzheimers". So that is what I have been going on. But how good is Characteristics of?
My thinking here Paula is that he also had a series of other tests and with the combined results the doctor felt confident enough to diagnose. I know with Lynn at least, they were reluctant to say Alzheimer's until they had exhausted all testing and other possibilities. He was well into stage 5 before he was diagnosed. It all just sucks doesn't it!? *sigh
You can say that again. I just called the alz association to see if there were any early onset groups. They said none in L A. I honestly wish I could look face to face with all of you instead of just writing.
Paula.....You don't really want to see us face to face. We are starting to look 10 years older than we are. Just give yourself a big bear hug and pretend it is from all of us. Before this is all over, technology might give us the tools to connect all of us together something like a conference call. I would rather hope for effective treatment for Alzheimer's.
Paula, my DH does not know who I am nor does he know our children.. In Sept '10 he was hospitalized and his Dr asked him who I was.. He indicated he didn't know. Prior to this I thought he didn't know me but I was afraid to ask him. Guess I was afraid of his answer.
DH is now in a NH and does not know me or our children. If you asked him he would tell you he is not married and has no children.
Of all the things this horrible disease does to us, the hardest for me is that this man who I've been married to this September for 52 years has no memory of our life together.
So each time I visit him,I introduce my self and tell him I love him.....
I neglected to tell you that there are times when my dh doesn't seem to know me. He will ask me how long I have lived in this house. One day he was talking to me like I was a visitor....telling me there was lots of stuff to eat in the kitchen, comfortable furniture and I could sit in the den anytime I liked to watch TV. I just couldn't say a word as I was too stunned. Sometimes he will ask if I am sleeping with him that night. I don't think he remembers a thing from the day he married me until now, 56 years. Once in a while he does speak of something when he was single, in college or high school. Work was his life and he never talks about it.
Never really remembers the kids growing up. Knows of them. It is all very hard to explain. I never disagree with him when he starts talking. Wouldn't do any good. Only thing I do is reinforce that he is loved and is safe. Now it is my turn to be his protector. Instinctively you will know what to say and do. You know that spouse of yours better than anyone else does.
To remind people if you have a webcam - via windows messenger and other messenger programs or skype you can get as close as possible to talking to someone face to face. You don't have to type you can just talk back and forth and see each others faces.
Paula--To address your confusion on how different parts of the brain are affected:
Yes, there is a "most common pattern" in terms of how the brain damage occurs in AD. It usually starts in the Hippocampus, where short-term memory is controlled, and then moves on to specific other areas of the brain. On the Alz Assn website, there is a section called something like "Take A Brain Tour" that shows you how progression occurs. However, although that is the most likely progression, there are people who just don't follow that pattern and the sequence differs.
Regarding no EOAD support groups in LA: I ran into the same thing here, 5 years ago. So I took the support group listing and called each facilitator, and asked if there were any spouses under 65 attending. Based on their answer, I picked a support group and made some contacts. Its not as good as a group specifically for EOAD, but you might meet several people caring for younger spouses who live in your area that way.
Paula, my DH has FTD and was diagnosed 3 years ago and is now 61. He still knows me but about 6 months ago I asked him if he knew who I was. Whatever was going on with his disease, he did not know that I was his wife and did not know my name. I was devastated particularly because he has become my life now and I am with him every day. The next day he did know who I was and has every day since then. For me it was a glimpse of the future-one I do not want to happen and has me very depressed that it will come to that, but I know it will. Two days ago he kept trying to go out the door-about every 15 mins. When I asked him where he was going he said he wanted to go home. When I told him he was home, he said he was not. I asked him the address of his home and he did know the address but didn't know that it was his home.
I feel your emotional pain. Unfortunately this is likely to happen due to the disease. <<HUGS>>
The medical name for the problem of not recognizing objects, us, or their home, etc., is agnosia. The brain simply can't recognize things; it has nothing to do with their love and feelings for us. Many times when my husband doesn't recognize me, I ask him about his wife. He says he loves her, she is a wonderful person, etc. When I hear that, I know he hasn't forgotten me and that is comforting.
Thank you all so much for helping me. I didn't go into what he was saying on that weekend that was the beginning of him leaving but here it goes. I was sitting on the couch and he came up to me and said he was very fond of me, he wanted my telephone number and I should also know he was married. I thought he was joking, but now I know he wasn't. A few days before this happened he was calling me by his first wife's name. We have been married for 35 years, and my name was gone.
Marilynin , thank you for explaining the uncommon pattern. I didn't know that could happen. This makes sense to me now. The only thing that was in the correct pattern was the memory loss. Then everything else started within a 8 month period.
It is so hard Paula and my heart aches for you, for all of us....... Lynn just recently said my name for the first time in well over a year. If I ask him what my name is, he can not say it...but if someone asks where is Nikki, he always points to me. He does know I am his wife, but he doesn't know what a wife is. At least I don't believe he does as he asks me at least once a week to marry him....
Don't give up Paula...I believe with all my heart that even when they seem lost to us, they DO still know us...it is just that they aren't able to communicate it to us. For the longest time Lynn was just lost in that blank stare, but even then, with a lot of effort I was still able to get him to respond to me.
And experts say that the emotions stay intact almost till the end. I believe that, as I see it in my husband. He still feels love for me and shows it, even though he may not always know me.
One evening, after snuggling with me on the sofa while we were watching TV, he said "Well, this has been fun but I'd better go find my wife now." I had to laugh.
If that is true, that they keep their emotions until the end, then that will be the reason I go and see him until the end. If he loves me and knows I love him, then maybe in some small way, I will be helping him on this blanking journey.
Marilynin, I wish I would have been able to laugh, I guess I'm so afraid of everything that I can't see past the fear. That's why I read about this disease all the time. Maybe one day, before it's too late, I can not be afraid. At least I would be more help for my husband. I don't want him to see the unhappiness in my face. It's so hard to act happy around him.
Paula--my husband was dx over 6 years ago. In the beginning, I wasn't able to laugh either. You will find that in time, acceptance will come, and you'll have funny moments...somehow, we must survive, and laughing helps.
Reading and educating myself has been my salvation. The more I can learn about the disease takes away some of the mystery and the emotional loss. I strive to be somewhat clinical about the symptoms, and understanding the reasons for the changes helps me tremendously.
I once heard of a study where end-stage AD patients' heart rates and BP were monitored. These were bedbound people who could not communicate. When a close family member visited them, there was a change in their vital signs; the only explanation was that the patients, somehow, recognized that the visitors were someone special to them. I agree with you that it is important to keep visiting till the end; we really don't know what's going on inside.
Marilyn, I have read of studies like that as well. It among other things is why I have such a strong conviction that they do remember us.
Paula, I know what you are saying. There have been times when I have had to leave the room to break down. I try very hard to always be upbeat and full of smiles when I am around Lynn. I truly believe my attitude reflects his mood. I should win an Oscar for the acting job I have done.
Even when he was so lost to me, staring off blankly for most of my visit... with a lot of patience and effort on part I was able to get through to him. Holding his hand, gentle stokes to his face, big smiles, upbeat talking, words of love.... eventually he always responded. Recently, on our anniversary, I couldn't help myself and did cry in front of him. He shocked me by comforting me! You just never know what is going on in their minds!! Even after all these years, just when I think I know, nope he still shocks me.
Paula, it would help me understand, and possibly help you if you could tell us what you are afraid of. I can guess of course, we all have fears, but maybe we can help ease some of them if you share with us. Here you can let your guard down, we are here to help in any way we can.
There is SOOOOoooo much that medical science does not yet know about Alzheimers.
The word dementia can be broken into two parts "De" and "mentia". DE means to be without, mentia refers to mental or thinking.
To have 'dementia' refers to being (or acting) 'without your brain'. Dementia is a symptom it is NOT the cause.
Comparing it to other diseases it is like saying you have a 'cough'. The cough is the symptom but what is the CAUSE? It could be a simple chest cold or it could be pneumonia or it could be Tuberculous. Many years ago before x-rays and other tests doctors really did not know. Now a days doctors have tests and can tell exactly what is causing your cough.
Unfortunately there really isn't yet any good test to easily say someone definitely has Alzheimer's disease except to examine the brain tissue through a microscope. And you cant to that until the person is done using their brain. (after death) As we learn more about brain disease we know that there are MANY other cause of dementia besides Alzheimers.
Many times the symptoms are so close as to be indistinguishable while the person is alive, it takes a brain autopsy to really know 100% for sure what the problem was. But doctors always try to figure it out. While none of these are curable, IF (and I mean IF) you can zero in better on the exact cause of the dementia then MAYBE you can use a better selection of drugs to keep a person a little more normal for just a little longer. But even that is not always possible.
You can think of Alzheimer's disease as a kind of 'brain rot'. There are still not understood chemical changes that are killing brain cells. As each cell (or group of cells) dies, their connections are destroyed and the things that that part of the brain did are gone. But not always gone forever. The brain keeps trying to heal itself. When that happens then SOMETIMES lost capabilities can return. They can talk again or remember again. Sometimes it is for a month sometimes a day of two and sometimes for just a few seconds. The brief moments when they become normal again are moments we all cherish.
This destruction is fairly consistent but not always. The quickest case I read about in medical literature was a man who drove home from work one day and parked his car in the driveway. The next morning he got dressed went outside and could not figure out out how to start the car or move it in any manner. He could not even get the key into the lock(!) This is not typical but it does happen and may be the type of thing you are seeing in your husband.
Trust me we are all praying that our spouses were misdiagnosed and it is something else. Unfortunately we all keep coming back to dementia what ever the exact cause.
Nikki, Steve has comforted me many times. So, although I usually try to remain upbeat as you said, occasionally I just have to let go. I think he enjoys being the "caregiver" once in a while--even at this late stage. His favorite thing is to rub my back, or hold hands. Instead of upsetting him, I think seeing me cry or look sad gives him a chance to be who he used to for a little bit.
Today something happened that REALLY made me sad, but I didn’t cry. We have 4 children, 2 daughters & 2 sons. Our girls live close by, our sons live away. I know that DH knows our children, but he lost the relationship, meaning he doesn’t know that they are his children. He never said that, but I could tell. Well today he asked about Patrick & when I mentioned that Patrick is his son he looked at me with surprise & said, “Really, Patrick is my son? I didn’t know that.” Then he said, “Boy, I’m really lost!” We talked about the other kids & he didn’t realize that they were his children either. I guess it didn’t hit me hard, cuz I realized a while ago that he lost that concept. The last time we were all together he referred to them as his “friends.” The kids know this & I know it’s hard on them. So sad.
Hi Paula, I know exactly how you feel. We have been living that way for 5 years. When he calls me Pet, I treasure that moment. I know that in that second, he knows woh I am but it is fleeting and quickly gone.
I think the worst heart break of all with this disease is when our LO no longer knows who we are...maybe that is the day that we should consider ourselves to be an official widow or widower...
Not knowing who I am has happened frequently in the past month. Today, he wanted to know who the woman was who takes care of him; who the woman is who does the cleaning; who the woman is who dries our car and takes him places. At that moment I know he didn't recognize me. Then he asked if "that woman" slept in his bed. I told him I was "that woman" - he looked confused for a moment or two, then asked me if I slept in his bed. I told him yes. After a few minutes, he said he knows something bad is happening to him, but he doesn't know what and doesn't know how to fix it. At that point, he did know who I was.
I think this is the scariest thing to me that has happened since his DX. And, right now, he is okay, setting the table for dinner.
Doesn't your heart break when that happens? It has happened off and on to me and like you say it is scary. Until now he will revert back to knowing me and even remembering my name. My son and family are arriving here (Michigan) from Kansas City tomorrow and I am not sure if dh will actually remember the kids 10, twins 7. They lived here until last year when my son was transferred. We try to skype them often. We could write a book, couldn't we? At one point my dh said, "I think I'm losing my mind." How true.
So sad to hear that some are kind of aware of what is happening to them. I have always been thankful that my husband seems oblivious. When he doesn't know me, it does not seem to upset him. Consequently, it has been easier for me to take.
DH is back to "normal" today. Even wanted to go to breakfast with our small group and he hasn't wanted to go in weeks! Knows who I am too! Guess this is part of that roller-coaster ride we are all on. Marilyn, it wouldn't bother me so much either if he wasn't so much aware.