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Old 06-08-2010, 12:22 PM   #1
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Should we tell him?

My FIL has started questioning some of his own behavior and after reading articles about his meds, etc, he has come to the conclusion that something is wrong with him that doctors have not told him. My MIL and most of the family agreed not to tell him that he was diagnosed with Alzheimers. His brother died from it, and he still denies that anything was ever wrong with his brother. We were trying to keep from scaring him I guess. Even tho he doesnt know his diagnosis, he has been worried that we were going to put him in a home, the way his brother was...where he died.

He is having a terrible time at night. When he takes his seroquel before bed, he passes out, but wakes during the night with vivid dreams, nightmares..talking in his sleep...always looking for "the baby". Speaks and cries to his mom in his sleep all the time. He sometimes realizes that he has been dreaming and then laughs it off...other times, isnt sure if he was dreaming or not. He has fallen out of bed looking for his pills...thinking he put them on the headboard and they fell on the floor. He has NEVER even taken his meds into the bedroom. Not sure if this is seroquel related or if it is just the alzheimers worsening?

When he does not take his seroquel...he does not sleep, therefore doesnt have the dreams, etc. But he is unbearable to deal with the next day. Very delusional and constantly accusing my MIL of having affairs, and thinks that I take her to meet my dad! I dont even have a relationship with my dad..he has never been to our house, (MIL and FIL live with us in an inlaw apt) but FIL swears he sees my dad down in their apt. My FIL has not even seen my dad since my wedding 20 years ago...so wouldnt even know what he looked like!

So, i would love opinions as to whether we should tell him what he has, or not? He isnt totally forgetful,to where he would forget it tomorrow. He remembers some things and not others. If you ask him who won the yankees game...he always knows. So, I am kinda sure if we did tell him, he wouldnt forget it anytime soon.

Help!

Christine

Last edited by ChrisNY; 06-08-2010 at 12:24 PM.

 
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Old 06-08-2010, 12:57 PM   #2
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Re: Should we tell him?

He probably already knows. It would be OK in my opinion to mention that the dreams etc could be the result of "that drug you are taking for your dementia". Dementia is somehow a less threatening word than Alzheimer's. However, he will likely forget again and ask again the next day what is wrong with him.

Does he remember Yankee scores of the most recent games, or of games played in the past? The old memories last the longest - the new memoires we make every day do not fit into their brain any more, they are not being 'recorded" which is why he may know old scores. Or he is in a realtively early phase of Dementia?

If he reacts with obvious fear, anger or outrage once the disease has been mentioned, try to avoid mentioning it again.

My Mom never knew what she had.

Love,

Martha

 
Old 06-08-2010, 01:26 PM   #3
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Re: Should we tell him?

Martha,

He watches the yankees game every day, and that is his enjoyment for the day. He will remember plays and scores of the game from the previous day. The doctor thinks he is about mid-stage but that he is able to compensate very well. You could ask him what he had for dinner last night, and he probably wouldnt remember...so some things stick and some dont.

He firmly believes that the seroquel is what causes the dreams, so he does not want to take it any longer...but without it, he is very difficult to deal with..with his delusions and hallucinations. My MIL is not the sweetest person, and can not deal with this disease the way that he needs. She would never "allow him to be right" about something he was wrong about. Even tho she knows its the disease talking...she just cant give in for the sake of peace. They are both very stubborn, and have never had a great relationship. So, without his meds...he drives her crazy with accusations. On the meds, he is lovey dovey and wants to be with her EVERY minute. With her disposition...neither way is what she wants, but she remains calmer when he is lovey dovey.

He knows he failed the mental exam, he knows his memory is bad when it comes to many things. But my MIL feels that if he knew he had the disease that killed his brother, his mother and now his sister...it would break him. He doesnt even know that his sister has alzheimers, and never believed that his brother or mother had it..he thinks its just the familys way of getting rid of their loved ones when they are frustrated with them...just put them in a home to die.

Ugh...so much to think about. All of you here are such an inspiration with the way you have handled and continue to help other people handle all of the different aspects of this disease. I often feel bad to ask questions, because I seldom have advice to give others. Dont want to just be a taker, ya know? I just hope that after having walked in your shoes a while, that I will be as helpful as you all are! Thank you!!

 
Old 06-08-2010, 02:54 PM   #4
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Re: Should we tell him?

Ask and learn, and later you give back by answering new people's questions. My Mom is gone now, but I still come here in case I can be of help to anyone, as previous members helped me. ( as a born New Yorker I am a lifelong Yankee fan!)

Love,

Martha

 
Old 06-08-2010, 06:28 PM   #5
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Re: Should we tell him?

JMHO, but I think everyone has the right to know the truth about their own medical condition.

My Dad - well, he watched his siblings go one by one from it so I am not sure he ever had to be told. Now that I think about it, I wonder what happened. I am sure over the years he had his moments of lucidity without being told anything, but like I said, not sure and I've lived out of state for many years.

Not an easy decision to make, that is for sure. My heart goes out to you.

 
Old 06-08-2010, 11:46 PM   #6
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Re: Should we tell him?

The right to know and the ability to know are not the same. In the case of dementia many times the ability to know is not there. With my Mom, I think she knew at first that something was wrong. She self diagnosed depression and denied any other problems. When she was finally officially diagnosed she was there when the doctor explained the diagnosis and forgot it She read the lengthy report and forgot that as well. For a time we did tell her and she would forget it repeatedly. As with your FIL, my mom had witnessed her mother, several aunts and siblings with the disease and it terrified her. Each time she would "get it" it terrified her causing extreme psychotic behavior. Then she would forget the reason but continue the behavior. Eventually we had to stop telling her because it was far to traumatic. It was like being hit by a baseball bat only to be hit again the next time. So why keep telling her... I wish it was never said at all....

As for the Seroquel... it is obvious from what you have said that the med is working to some degree. You may need to change the dosage, give it at a different time, give two doses a day instead of one, or supplement it with something different to help him sleep better at night. My Dad had those same delusions at night, was sweet at time and totally paranoid at others. He was on Seroquel for a while along with several other medications in various combinations. It took a while to find the right combination and dosages for him... and then it changed constantly because his symptoms changed. He was doing great until a bout with A-fib and that started the balancing process all over again. Your best best is to talk to the doctor about his behavior and see if there is additional medication, a different medication, or a change in dosage or timing of the doses that might help.

As for MIL... it looks like she is just not going to be happy either way. I will give you a heads up. When the care giving parent is unable to deal with the patient and tends to agitate the patient, that is a recipe for disaster. MIL's agitation of FIL will cause inappropriate responses from FIL which in turn will further aggravate MIL, who will give back angry responses which will not be understood by FIL and the battle is on. Violent outburst are not beyond the realm of possibility.

When my Mom was in the earlier stages of ALZ, before her diagnosis, and struggling to care for Dad and his vascular Dementia I saw this play out. Dad would become so frustrated with Mom!! I do know that once he did hit her and I know a couple of times he locked her out. There were a few times that I was able to stop the escalation before it became physical but only after fist were clinched as well as teeth. More than once the two of them had to be separated for a cooling off period.

So don't take this squabbling lightly. Remember at least one of the parties involved is not thinking clearly and doesn't know how to respond appropriately or walk away.

Love, deb

 
Old 06-09-2010, 01:09 PM   #7
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Re: Should we tell him?

ChrisNY

I would definitely call the doctor immediately and tell him about the dillusions and nightmares. he gets agitated at night because of a thing called sundowning and its very usual.

BUT its apparent either his meds needs to be changed, adjusted or something else also provided to make his sleeps more sound and deep.

As far as MIL

My sister would do the same thing. She just couldn't let Mom be right no matter how wrong Mom was. My sister couldn't let it go. My sister also would tell my mother things such as "we're going to go out to visit Aunt X on Saturday" I guess just for the sake of saying anything to my Mother who no longer has the ability to talk.

But then she'd be mad and frustrated at how often my mother would get up from the couch and try to go upstairs or be successful in going upstairs and then my sister would hear her and go check on her ONLY to find Mom undressed and getting into her Sunday finest because they're going to dinner at Aunt X. Only this was a Tuesday and they weren't going until Saturday.

Get the picture? this happened all the time and I'd yell at my sister for yelling at my Mom. I'd say "why do you bother to tell her things like that!, when you know she doesn't know what day it is?" My sister would just shrug and walk away. It would aggravate the crap out of me!

So keep in mind that soon, your MIL will not be able to deal with her husband's failings. She may need to find activities and groups to get her out of the house and respite away from husband, it may make her more tolerant when she is home. Think about bringing in a nurse for a few hours a week to help her with him. Maybe the nurse can take them out for walks and such to help tire him out

Keep writing, we're all here.

Your Caringsister54

 
Old 06-12-2010, 12:30 AM   #8
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Re: Should we tell him?

Christine, Perhaps you could try referring to his memory issues as "forgetfulness" or something similar, for now, and see how he responds to that. Your priority is to keep him on his meds and as calm as possible. If he already knows what he has and is avoiding the name, you don't want to say anything to frighten him further.

Does your FIL attend his doctor appts alone? If he's going alone, he may not be telling the doctor about the side effects. People with Alzheimers process the give and take of conversation much more slowly than we do. You may not see it yet, but eventually you will recognize the lost look in his eyes as conversations go on around him and he is unable to keep up, much less participate. My mother used to get very upset after visitors would leave the house because she couldn't keep up with the conversation and no one realized they needed to slow down for her. Some doctors rush through an appointment in the say way, not giving the patient time to either process what he's saying or to formulate a response. And suddenly the appointment's over and they're at a loss to know what was said. If you could attend with him, you could cue the doctor to slow down as well as help your FIL to keep up and to supply needed information. It's important that the doctor knows about the effects the med is having on him. He may need to adjust dosage or change the med to something different. But he can't do that if he doesn't know about any of it. And if FIL is unable to communicate that, then someone needs to do it for him. I know it's easier to say than to do. I've been there, too. And sometimes it's trial and error until the proper combination is found.

Not sure what to say about MIL. Some people simply do not have it in them to deal with illness in others, especially when it's a debilitating illness such as Alzheimers. If their relationship was rocky before the illness, there's probably not a lot you can do since the motivation is clearly not there for her. One thing I have found, as this illness has hit all of my mother's siblings, when it's clear that a nursing home or similar placement is going to happen eventually, it's usually easier to make that change while the person is aware enough to make some friends and get used to his new surroundings. My uncle moved into a veterans home early in his illness and had a chance to get used to his surroundings, made a few friends, learned to know the staff well, so was much more comfortable with the situation. Mom, on the other hand, was not placed until she was in advanced dementia, and she was lost and afraid for the rest of her days because she did not recognize anyone around her and had no idea where she was. Just something keep in mind for down the road. Best wishes to you.

Nancy

 
Old 06-12-2010, 05:26 PM   #9
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Re: Should we tell him?

Thank you all for your replies!

My FIL's doctor did change his medicine this week. I called her and explained what was going on with the dreams, nightmares..etc. She said she wanted to try Rispadyl (not sure on spelling). So his son told him that the doctor felt that maybe seroquel wasnt working for him and wants to try this new one. He was satisfied with that explanation...and didnt ask any questions....just happy to not be taking the seroquel anymore.

Its funny because my FIL's doctor was out on disability when he had the mini mental exam and was diagnosed with ALZ. So the other doctor in the office is the one who gave him the exam (and made him look like a "fool") and then prescribed the seroquel. So now my FIL HATES that doctor, and we think that plays a big role in why he hated the seroquel...that drs name was on the prescription label too! So, he is much happier now that his regular doctor is back and has changed his med.

Nancy, I do take him to all of his dr appts and I do go in the room with him. I absolutely know that "blank look" you are talking about, and when we leave, my FIL will always say...I am so glad you were there, I didnt understand what she was talking about. I think he just gets so nervous about being there. Sometimes he just makes a comment that has nothing to do with what the dr is saying, and I know he is just lost. We have told him that the meds he takes are to help him with his "forgetfulness", but he is wondering why the arent working...why is he still forgetful?

Just found out today that his last living sibling (of 7) has only days to live. Her alzheimers progressed very quickly so that she doesnt recognize most people. In January she was just very forgetful. But she also just found out she has breast cancer and brain tumors..so Im sure its a combination of everything. My SIL told my FIL today about his sister and I havent heard yet how that went.

So much going on...and its getting harder for me to help. His delusions have him believing that I am taking his wife and family away from him. He thinks I take my MIL out every week to meet with my dad, and he thinks I keep his kids from coming to the house to visit. He thinks I am trying to help my MIL take out loans so she can leave him, and that I go thru "his papers" all the time. I know it is not him...he has always loved me like a daughter, and has always praised me for all I do for them. But i try to stay out of things to try and keep his mind at ease.

Ok,,,didnt mean to ramble..but so glad you are all here to "listen".

Christine

 
Old 06-12-2010, 11:52 PM   #10
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Re: Should we tell him?

You are doing well Christine and know there is always somebody here for you to vent to. Yes, the delusions and paranoid can be so very draining. It's just the confusion in their brain working overtime. I do hope the Respidol works... Dad was on it for a while and I do believe it helped him. Mom is on it now along with a few other meds. Seroquil and Respidol seem to be the first line of defense. I do understand your Dad's frustration with the "new" doctor that gave him the diagnosis and the meds. Hopefully the new meds from his regular doctor will do the trick. Perhaps that is the light at the end of the tunnel.

Depending on your Dad's ability to comprehend and remember.... When Dad's sister died Mom and Dad actually went to the services. Sister 4 took them. Mom obsessed about her death and the funeral for months. A year later I did not tell Mom when her step sister died. When the local newspaper arrived (I forgot the obit would be in there) Dad ask mom is she knew Annie. She said yeah. Dad told her that she had died. Mom's only comment was... it's about time. It was never mentioned again. So tread with caution when giving bad news to your Dad. Mom is so far into her disease now that she doesn't understand that Dad is no longer there. He died March 5 while they were living in the same room. She has only ask about him a few times and thinks he's at work, a meeting, or visiting his mom. I would not dare utter the words that he is dead to her. She would grieve in the moment and then it would be forgotten only to be repeated. So assess Dad's ability to understand before you inform.

One thing you might try is just staying away for a week or perhaps two. Then go back and see if there are the same accusations. Mom had a problem with Sister 2's new hubby at one point. He just stayed away (after Dad threatened unimaginable harm because he upset Mom) for a while. Now he goes with no problem from Mom.

Hope the new meds help and life gets better for you all

Love, deb

Love, deb

 
Old 06-13-2010, 06:40 AM   #11
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Re: Should we tell him?

Hi Christine,

My dad is in the late stages of alzheimers. Even now, in the late stage, he senses something is wrong. He seems to be in a state of crisis all the time. He always wants to 'go home'. He doesn't recognize his home...the place he's lived for more than 50 years.

Your FIL probably senses that something is wrong. I agree that I don't think you need to attribute his problems to alzheimers. If he's like my father was in the middle stages, it wouldn't have registered and even if it did, he would have promptly forgotten what we said minutes later anyway.

I don't see any up-side to telling him he has alzheimers or even dementia. I don't think they can process the information. It would be like telling a 3 year old that they have strep throat or something. What good would it do? They wouldn't understand. I would probably just attribute the problems he's having to his medication and continue to work with the doctors to find a sleeping aid that works. We've struggled with my dad for a long time now over sleeping issues. THe medications would knock him out initially but he would wake up in the middle of the night severely confused...wandering around the house...and unsteady on his feet. We had an episode just two nights ago where he got up after taking a new sleeping medication (adavar?) at 4:00 AM, stumbled into the family room, fell to the floor, and continued to stay there for another 7 hours...unable and unwilling to get up and return to his bed. Thank God he wasn't injured.

It's a difficult disease to deal with. It's nice to have a place to come wehre others have gone thru it and understand. I guess the only thing I know for sure is that we just have to take this disease one day...sometimes one hour...at a time.

Hugs and prayers to your and your family.

 
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