I have been studying and tracking fil's behavior over the last two months, ever since we have been trying to get him his psych eval. Maybe some of you who are more knowledgeable can help me sort some things out.

I have been reading up on Alz and the more I read, the more this does not sound like fil. He has never had an AD diagnosis but that is what everyone thinks about when you say dementia. Vascular dementia has been mentioned by a couple doctors. I am not looking for a label so much as a way to deal with what ever it is.

My understanding of Alz is that it erases memory from the present back and that new memory is not retained. Fil has not lost memory and does have new memories. In fact, he remembers everything and he will tell us about things that happened yesterday, last week, last month or last year. The problems hallucinations. He remembers everything that really happens but also has a whole other set of false memories. He believes people come into his room, he goes out, he walks, he moved in with a nurse from the NH before he moved in with us - none of this is true. He also has the ability to reason. His reasoning is off on occasion but not really any more than prior to his illness. He has always had reasoning difficulty (obstinance?). (I will detail a bit more about that in a separate post with a more specific question).

I have also found that he is lying a lot. Also something he has always done. However, I suspect that much of his "confusion" is an act. Yes, his hallucinations are very real and at times cause him to lose control. However, he does know that he has hallucinations (denies it to the doctors, though) and I think he might be playing on that. I know that he pouts to get his way because he found out that if I feel guilty he gets all the ice cream he wants. Recently I have been calling him on the lies. I used to just nod and not argue because I thought that was preserving his dignity. However when I catch him feeding the dog at the table or calling one of the children a name he denies it. Recently I have said things like, "I thought I saw you." He is now admitting it and laughing about it. He says things like, "you must have eyes in the back of your head" or "I can't get away with anything anymore."

I don't even know what my question is really, I just need some insight. Maybe you could set me straight. Here is my observation: He is a mean and nasty man who dislikes people (he has always said that) and lies and manipulates and who also has hallucinations. What does this sound like?

Thanks for listening,
Lannie

P.S. Just so you know, I really am pleasant and loving to him most of the time. I know my posts sound harsh but that is just because I say things here that I can not say anywhere else.

PIN the Dr.down & insist on answers.

This may be an outside guess at what is happening to Fil. Much of what you wrote makes me think of some sort of Dissociative Identidy Disorder. To be exact, it sounds like Multiple Personality Disorder.

Lannie

The frustration you feel from not getting a straight answer from a Dr. is something I can relate to so well. I think Peggy is right, as our loved ones age and so many things begin to go wrong that it can be hard to know the cause of the dementia.

I'm not defending Dr.'s in any way, shape or form, just mentioning is is a complex issue. You may be right about them being frustrated because he did not take their advice in the past. However, the need to do their job, and that is to ger a correct diagnosis. Good luck in this quest.

Vicki

Sugarlips

Lannie,

I completely understand your frustration with the lack of information you get from the docs. I am not trying to defend these actions of the doc, but I might have some ideas as to why it is happening. A lot of the problem is the privacy act that was passed a few months ago. Honestly, I wonder if that is designed to protect the doctor instead of the patient. It may also be a case where the doctor does not know exactly what is going on. Sometimes with elderly people they have so many things going on in their body it is hard to determine what exactly is going on. Sadly, there are also some doctors that don't care. I hope this is not the case with your fil, but I have heard so many stories of doctors not adaquately caring for elderly people. I know it is frustrating to the docs when patients do not listen to them also. The condition of your fil's mind makes that a mute point now. My mil was also one that never listened to the doctor. She is a stubborn person who would not let anyone tell her what to do. She is now hospitalized and we don't have any idea what their plans are for her. We know that they have some serious questions about the care she recieved at the nh she was at. They don't want to send her back there. The nurses are even confused as to what is going on with her. There is so much wrong with her that it is hard telling. That is why I think the docs are not very open. My BIL is her guardian, and even he is having a hard time getting information. He has attempted to contact hospice (we think that is the type of care she needs at this point, she will never truely get better even though it looks like she is sometimes. During those times bil seems to back off on the hospice thing) Hospice even has trouble getting the information they need from her doc and their own medical staff is confused. In the mean time she keeps going up and down with no explaination for it and we are all living in limbo. This is how it has been for the last few weeks. That is why I haven't created many of my own posts because nothing is changing. If they don't know what is going on I don't know why they don't just tell you that. Are the drugs working? If not, keep persisting until you get a satisfactory result. You may have written this before, but are you guardian of fil or do you or your dh have a durable poa on him? That may help you get the info that you need. I hope everything gets better for you soon.

Edyth Ann & Peggy, Thanks for the advice and comments. We have seen three doctors since the major onset of his dementia. None would give us a diagnosis. They ruled out things but the whole ordeal was so frustrating. It is amazing how evasive the docs can be when you ask them a direct question.

For years fil was a little "off" but a lot of that is his own personality. He has always lied and exaggerated to make himself look special or to entertain others. His dementia came into full swing after his leg was amputated. He woke up and has never been the same. We had CAT scans and MRIs and other tests but nothing showed anything new. There is no doctor who is willing to do anything but write a script for anti-psychotic meds. Maybe there isn't anything that can be done but it gets infuriating when no one will give you any information.

A lot of the reason for their lack of help is that for years (at least 20) FIL has been seeing these doctors and they gave him advice but he always refused to take care of himself. So now they kind of have this reap-what-you-sow attitude. I can't say I disagree but as a caregiver it makes things difficult.

I really just need to get control of all my negative emotions. I am determined not to let this ruin my family but no one is happy if I'm not.

Lannie,

Since your fil does have the vascular issues (especially the coradid arteries)there is a good possiblilty that there is not enough blood going to the brain. That can explain the behaviors that he is exhibiting. The same thing has happened with my mil. She has congestive heart failure, along with blocked arteries and her coradids are also 70% blocked. She also has encephilitis and a severe UTI. It seems like when she is on oxygen she is much more alert, recognizes people better, lives in the present times and is more "with it". Now if she would stop removing the prongs from her nose she would be okay. Maybe his doctor could give you more information as to what is going on with your fil. From what you have described here, I would guess that his brain is not getting enough oxygen.

Take care and God bless

Peggy
aka rainbowgirl

There are many different causes for dementia symptoms. AD is the most common. It is very possible that y9our FIL is suffering from a Vascular Dementia. It is also possible that it may be one of the FLD (Frontaltemporal Lobe Dementia) or LBD (Lewy Body Dementia) or even a mix dementia. In general most dementia causing diseases/conditions are treated or cared for the same. There are differences and that involves the different dementias that will effect how you care or treat the LO. You may try contacting your Alz. Assoc. and see what information they can give you in dealing with the symptoms your FIL is showing.

Edyth Ann aka Bubblehead aka Queen Bubble
AOL IM EdythAnn12
edythann@netzero.net

Sechang, thank you for the explainations. That does explain a lot about what has been happening. Understanding that there is a real cause for this behavior is helpful.

Thanks again.

Lannie, thank you for the kind words. I do believe you have answered your own questions concerning FIL's seeming dementia. To clarify a couple of things for you:

CARDIAC OUTPUT; a well-functioning heart contracts between 50-60% of its capability at rest. Borderline function cuts off at 40%; and a 20% function is very poor indeed.

ENDARECTOMY: that is the term for surgical opening of the carotid arteries, cleaning them out and stitching them back up. This is a very risky operation because some of the major arteries to the brain must be clamped to prevent any blood clots to the brain during surgery. Nevertheless, clots sometimes do find their way to the brain after the clamps are removed and result in stroke of varying severity. Or the stroke(s) may occur later after a successful surgery and healing. In any case, these strokes and oxygen deprivation do take a toll on the brain. If the carotid arteries have again closed so that only 10% of the vessel remains open, FIL is not getting the required blood flow (with its oxygen) to the brain. Think of an artery as a garden hose which is wide open. The water flows freely. Now pinch the hose, so only a very little bit of water gets through the hose. You can see what happens.

The fact that FIL has so much atherosclerosis in the coronary arteries and carotid arteries says that he also has hardening of the arteries elsewhere in the body, the brain included. Vascular dementia ranks second below Alzheimers and it is just as devastating, but in a different way.

Sechang, yes he has many problems. In the past he has had two heart surgeries, one was a triple bypass and I am not sure about the other. He has had his carotid arteries "cleaned out" (can't think of the term) twice. His doctor said he has "20% cardiac out-put" - I don't really know what that means but that is the term she used. He was diagnosed with vascular disease many years ago. Two years ago he was told by his cardiologist that his carotid arteries were too bad for surgery and it was just a matter of time. Fil said they were 80% and 90% blocked (we did not hear that for ourselves so I can not say those numbers are correct or not). He has had many strokes. He also has diabetes but I don't know if that is related at all.

After reading your post it does sound like that is the problem. In fact, based on the doctor telling him there was no more that could be done and what you are saying, it sounds like this is the way it goes as things progress.

That does give me a different way to view things. The doctors are treating his diabetes and amputation complications but have not given us a clear answer about the dementia. I guess they fix what they can. His cardiologist told him he didn't need to come in anymore, he couldn't be helped.

Does this change how I should be handling things or is it still hang-on-for-dear-life-and-get-through-the-day?

By the way, I really am sorry you are dealing with this with your husband. I can't imagine the pain. This situation has certainly made my husband and I view our future together as uncertain. I really admire the strength you have. You are always able to help everyone else.

Lannie

Lannie, does fil have other associated medical problems? i.e. kidney disease, coronary disease, carotid artery disease (pay attention to this one.) Anything that would obstruct or slow down blood flow to the brain can be termed vascular disease. If he has never had a carotid artery ultrasound/Doppler exam, it seems like a good place to start if the doctor concurs, of course.

My husband has all of the above problems and now that he is at end stage renal disease, he is hallucinating like crazy; today was especially bizarre. The kidneys cannot excrete urea and creatine and it builds up as toxic waste in the blood, poisoning body and mind. He also can reason, is very logical in lucid moments, remembers too much as far as I am concerned