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rann181 10-22-2012 03:08 PM

new to the board...
 
I finally broke down and searched for an Alzheimers Forum. My Mom has been suffering from dementia for about nine years now. She's never been to a neurologist, only a G.P. She's been taking Aricept and Namenda for many years now. I had never seen the the seven stages of the disease. She exhibits symptons of stage six.

She hasn't been very problematic over these years for which I am very thankful. If the situation were the reverse, I would not have been able to work till I could retire from my company with full benefits. (I just recently retired).

The thing she is doing now is talking to herself or an imaginary friend. This is what I don't know what to do about. It happens at night and I think it is referred to as sundowning. It's not bad right now just somewhat annoying. Does anyone else have any experience with this type behavior?

Gabriel 10-22-2012 10:47 PM

Re: new to the board....
 
Rann, welcome and glad you found us :) I am glad you have been lucky along your Mom's journey so far and hope it continues. As for the behavior... it is what it is and you need to just go with it. In her reality these people she talked to and sees are real. If they are not causing her distress then just go along with her. It is typical for those with dementia to have delusions. They also confuse TV, shadows, pictures, dreams, and other visual input. Yes, it is usually worse during sundowning but can happen at any time.

My dad walked in the first morning and ask if his brother had already eaten. HUH?! Which brother? The one that had been here last night for supper and spent the night with us. Uncle H.. said as if we had lost our minds! The brother he was referring to had been dead for almost 40 years. My response was "Oh, yeah Dad, he ate early and left for work!" Dad sat down and ate with no further reference to his brother that morning. But on several occasions after that he ask similar questions about his dad. You just have to go with the flow because his "dearm" about his brother was real to my Dad! As long as we let him believe in his reality he was fine.

He also saw intruders. He could hear them talking and see them in the shadows. A couple of times he swore he had heard gunfire (probably the TV show Mom was watching). He had to lock up the house and we let him. If he needed to peep out of the curtains so be it. As long as the behavior was not dangerous or upsetting to him... we were good! Dad just kept locking up the house at night and as long as we didn't stand in his way life was good.

Mom carried on conversation with something or somebody for a while. At times it got heated but was never dangerous to her or truly upsetting. What upset her was when you tried to tell her nobody was there. If we tried to alter her reality to match ours... it was a fight.

Their reality is as real to them as ours is to us. You will not have much success convincing her that what she knows is not true. You will only frustrate her and cause her to have to defend her position... which could lead to angry outburst that you don't want to deal with. There's nothing wrong with a few friend (real or imaginary) so don't let it annoy you.

Love, deb

ninamarc 10-23-2012 12:33 PM

Re: new to the board....
 
My late FIL didn't really talk to himself or see delusions. His delusions were based upon real people around him. He had Alzheimer's and died with severe stage at an old age.
Indeed his behaviors would have made us feel strange or annoyed or even hurt. Sometimes I felt sorry or sad for him realizing he was very sick with memory loss. When he thought the tv show was for his own research and asked us to write his papers; when he forgot his computer and asked us to use computer to do his research again... I really felt sorry for him. That was my first reaction.
But once you understand your Mom's behavior is from dementia, then you can just ignore it knowing it is her disease. Maybe she needs to join day care center to have some activities.
It is common for demented person to have delusions. This part may not be due to sundowning but she sure would do more of these things after sunset as she would feel lonely or depressed.
It is good that your Mom is Ok so far and you are now retired. Now you can try to understand dementia. Yet if you can, try to get her diagnosed with the type of dementia (Alzheimer's or vascular dementia?) It makes a difference. She would get worse later on given dementia, so be prepared that she will have more behavior issues.

Regards,
Nina

kind1 10-27-2012 07:37 PM

Re: new to the board....
 
It must be very draining beyond comprehension to be a caregiver of someone with Alzheimer's or any type of dementia. With regard to hallucinations (and delusions - false beliefs), one is not supposed to go along with them which I'm sure that you don't. There is a great book for caregivers of those with AD or other types of dementia called 'the 36-hour day'. Please do talk to your mother's GP about her symptoms. You may want to also schedule an appointment with a neurologist, too. My thoughts and prayers are with you and your mom and everyone affected by your mother's illness.

Gabriel 10-28-2012 06:37 AM

Re: new to the board....
 
My father (vascular dementia) had frequent delusions. It was a symptom of his dementia. There nothing more that could be done to alleviate the delusions. Delusions are real to those experiencing them. Beyond that the ability to think, reason, remember, and process has been damaged. I didn't try to convince my Dad that what he believed was unreal... that he was wrong? If I did it only angered him. In a disease with no cure or treatment, you strive for contentment. Yes, I did go along with Dad's delusions. Yes, let the doctor's know about all symptoms.

Love, deb

Luau 10-28-2012 08:50 AM

Re: new to the board....
 
[QUOTE=kind1;5079793]It must be very draining beyond comprehension to be a caregiver of someone with Alzheimer's or any type of dementia. With regard to hallucinations (and delusions - false beliefs), one is not supposed to go along with them which I'm sure that you don't....[/QUOTE]

Dear Kind,
Often I have heard the advice not to challenge their delusions when the delusions do not pose a danger. Your advice appears counter to what I have heard previously. Do you mind clarifying your advice, and why it might be beneficial to challenge false beliefs? Thanks in advance. - luau

ninamarc 10-28-2012 12:46 PM

Re: new to the board....
 
I personally think that there are 2 kinds of situations: for minor issues, just leave the demented person be and go along with her idea in conversation to cope with it or calm her down.

The other situation is when the delusion becomes very serious and would affect other people. The situation would be like when she tries to call 911, the caregiver has to cope with it trying to distract her so that no 911 calls. If the demented guy insists he would marry or have this caregiver or some lady friend as his girlfriend or wife, the caregiver or the person should try to stop playing game. Don't say you are the mate or anything, but gently guide him away to do other things. Don't play the game of saying you are the boyfriend or girlfriend.
I think when you don't go along with the delusion, you don't need to be mean to the person, just gently guide them away from the delusion.
Strictly speaking we don't really go along with the delusions. We just distract or cope with it. When a yes to the delusion can calm her down, sometimes a gentle move away from the delusion can be helpful as well. It depends on the serious level of the delusion.

jagsmu 10-28-2012 08:26 PM

Re: new to the board....
 
I was my moms caretaker for over five years, My mom had some wonderful visits with her brothers who had passed years previous, she would tell me about how they were doing and i would listen and ask questions about them that i knew she wouLd be able to tell me, why would I argue with her when she was so happy, there is so little that we can do sometimes it is kinder to let it alone as lone as it is not dangerious, I would have done anything, agreed to almost anything to see my mom smile, why would one go to the lengths of disagreeing when most times a few hours later all is forgotten, where there is no harm there is no foul...
Hugs Judy

einfini 10-28-2012 10:56 PM

Re: new to the board....
 
[QUOTE=jagsmu;5080298]I was my moms caretaker for over five years, My mom had some wonderful visits with her brothers who had passed years previous, she would tell me about how they were doing and i would listen and ask questions about them that i knew she wouLd be able to tell me, why would I argue with her when she was so happy, there is so little that we can do sometimes it is kinder to let it alone as lone as it is not dangerious, I would have done anything, agreed to almost anything to see my mom smile, why would one go to the lengths of disagreeing when most times a few hours later all is forgotten, where there is no harm there is no foul...
Hugs Judy[/QUOTE]

Hi, everyone! I am a new member of this forum and I'm glad that I can be able to find some solutions and inspirations here. I don't have a relative having the similar situation, but I would definitely do the same thing like what jagsmu has been doing. I must agree that whenever there's no harm, there is no foul. I guess it's the matter of seeing and letting your loved one become happy this way.

ninamarc 10-29-2012 09:59 AM

Re: new to the board....
 
From the real experience that I had with my late FIL who had severe Alzheimer's, I need to say that it really depends on the caregiving and the patient. It is dementia. It is not regular mental illness. It takes a long toll like 5 or 7 or 10 years. The demented person gets more delusions in moderate stage. To redirect them all the time is hard work and impossible. Sometimes the caregiver just copes with it and "agrees" with the person if no harms are done. By agreeing to the green wall, one avoids arguing or dispute if the patient insists it is a green wall. I agree that in early stage, certain corrections may help but in later stage, such disagreement could only bring arguments and upset the patient.
That is why I mentioned that for minor issues, it is OK to agree or go along with it. For major issues such as hurting oneself or affecting other people, they have to be distracted and etc. In the worst case, sedatives can help.
In real life, it doesn't work like textbook. I am sure for other mental illness, it is differnet issue. For dementia, it is simply impossible to redirect all the time.

Gabriel 10-29-2012 10:46 PM

Re: new to the board....
 
For me, contentment is the number one thing that I can give to my parents who both have dementia. Dementia is brain damage and their thought processes are not a choice but a product of the damage to their brains. Back in the 1980's there was a consensus that reality orientation was the way to go with dementia patients. You reoriented them to reality repeatedly. By the 1990's it was recognized that reality orientation was not the way to go. It only frustrated the patient and the care giver. Today Validation Therapy is the norm. In that we validate their feelings and emotions. If they are scared of the green martian that is on the wall then we need to acknowledge their fear. That is not accomplished by telling them that the martian does not exist. We do that by telling and/or them that we understand that they are afraid. That connection become communication and can lead to contentment. We have to join their world and reach out to them in their reality in order to be the safe haven that they need.

Love, deb

myra8320 11-14-2012 12:38 PM

Re: new to the board....
 
hi i'm also new to the board and not reaaly sure as to what to say, new to laptops aswell. my mom has the alzimers/dementia 6 yrs now and i feel so sad and angry at times and then guilty for feeling that way, but i'm happy to have found this board and hoping it will help both you and i :)

Gabriel 11-14-2012 09:25 PM

Re: new to the board....
 
Myra, welcome to the board. Sorry you are dealing with this disease but glad you found us :) Just know you are not the only one in this struggle. We are on on this journey with you!

Know it is normal to be sad or angry. This is a horrible disease and at times we are all sad that this has happened to us. It can also make you angry. Angry because it is taking your mother away piece by piece and even angry at Mom because she can not be the person you knew before. Again... this are all normal feelings. We are only human and these are natural human reactions. It is frequently said here that guilt has no place in this disease. You did not cause the disease and you are doing everything you can to make life as comfortable as possible for your Mom. You have very little control over what happens to your Mom at this point. You have to allow yourself to feel the emotions necessary for you to get through this disease with your Mom even if it is sadness and anger. Guilt is reserved for things that you intentionally do to harm someone. That is not what you are doing. You are just sad and angry because your Mom has this disease.

Try to focus on the positive. When you find yourself being sad or angry find a way to make Mom smile or laugh. I have found things to be thankful for in this disease. I have a closer relationship with Mom now than ever before. If she did not have this disease we would be hours apart talking occasionally. Instead I see her many times a week. I sat with her today and talked to her. She doesn't understand much of what I say and doesn't talk back coherently but she smiled and we enjoyed being with each other. I have learned patience. NO explanation needed on that one! I have learned to slow down and enjoy life at a slower speed so she can keep up with me. Our visits are the only time I watch the birds and flowers grow in the garden. I have learned a new kind of love that is truly unconditional. I have also learned to look at life from the perspective of someone else. Those with dementia look at life differently and when you can go into their world it become so much easier to deal with them and the disease. Today I don't need much... just a smile from Mom will light up my day :)

Hope you post often :)

Love, deb

deb1125 12-03-2012 09:56 PM

Re: new to the board....
 
Hi all, my sympathies to all and what you have and are going through. I am not sure if any of you are aware of a dementia that is different than Alzheimer's. It is called Lewy Body and that is what my mother died from. Lewy body dementia includes hallucinations. When my mother was in the hospital 6 months before she passed, and when the neuro heard that she saw my dog that had passed years ago at the end of the bed, and that she was hallucinating at home, he changed the diagnosis from Alzheimer's to LB. I would spend hours with her and she would see things and people and I would sit, listen and play along. The difference of the 2 diseases is very important in medicine. LB cannot have some medication ALZHEIMER'S patience take, it can prove damaging and fatal. LB is also accompanied with Parkinson's symptoms.... If your loved ones are hallucinating, please inquire about LB.

deb1125 12-03-2012 10:10 PM

Re: new to the board....
 
Hi all, my sympathies to all and what you have and are going through. I am not sure if any of you are aware of a dementia that is different than Alzheimer's. It is called Lewy Body and that is what my mother died from. Lewy body dementia includes hallucinations. When my mother was in the hospital 6 months before she passed, and when the neuro heard that she saw my dog that had passed years ago at the end of the bed, and that she was hallucinating at home, he changed the diagnosis from Alzheimer's to LB. I would spend hours with her and she would see things and people and I would sit, listen and play along. The difference of the 2 diseases is very important in medicine. LB cannot have some medication ALZHEIMER'S patience take, it can prove damaging and fatal. LB is also accompanied with Parkinson's symptoms.... If your loved ones are hallucinating, please inquire about LB.


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