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Old 11-07-2008, 05:19 AM   #1
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Does your loved one "know" they have dementia?

Is there any benefit to explaining to your loved one that they have Alzheimer's or some other kind of dementia? Would it just be counterproductive?

My mother-in-law thinks she's perfectly normal and that we have her with us purely because she hated living with "that kook", her husband. She sat and talked the other day with me about how she cared for her mother-in-law who had Alzheimer's for 10 years. She talked about how hard it is to care for someone like that. I could only agree! But she doesn't like that we can't leave her alone and won't let her do certain things in the house. I've so far been able to give various excuses other than "you have dementia and can't be left alone."

She'll have an appt in a few weeks to assess where she's at. Do I talk openly to the doctor in front of her?

We talk in code in front of her at home when necessary. Like, "that A word," instead of "Alzheimer's." Do you? Does your loved one have any idea, or did they ever, that they have dementia?

Thanks,
Emily

 
Old 11-07-2008, 05:50 AM   #2
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Re: Does your loved one "know" they have dementia?

You know you asked the thousand dollar question. When my mother started her hesitation in her speech as she struggled to come out with a word, I asked her -- do you know that you do it? Are you aware that you know the word but for some reason your mouth isn't saying it? She said 'yes, and its frustrating".

Then as she lost her ability to talk at all and can only make 'sounds' in her throat, I asked again, if she knows that I can't understand what she wants? She can't answer that. She shakes her head but her 'yes' and 'no's' aren't appropriate sometimes so I wonder if she truly understands questions when asked.

I cry when I'm left alone with her and she wants something and I don't know or can't make out what she needs or wants. I feel like a failure. My sister can walk into the room or be in the room and within a short time know exactly what my mother is trying to say. I know that its the 'magic' that goes on between parent and child because weren't we good at reading the needs of our children??? But it makes me dread when my sister does need to be substituted because I know it frustrates my mother more by the fact that 1) my sister left her side, and most importantly 2) that she left her with someone who can't understand what she's trying to say or want.

So caregivers take pity on those trying to help in any way. I feel like I'm always fumbling in the dark when it comes to Mom. She always replies 'no' when I ask her if she knows who I am or that I'm her daughter? So instead I just try to help by supporting my sister when her and mom get into a tug of war of the wills and by forcing sister to realize that this isn't healthy for her. I'm trying to be supportive in the tough decisions that will allow sister to have some quality of life for her remaining years.

Today sister has an appointment with Visiting Nurse and I intend to be there. Hopefully if she doesn't feel that my mother is bad enough for a nursing home, she'll at least allow a nurse to come in and respite her so she can take a nap and/or do something with me at times.

Take care one and all.

 
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Old 11-07-2008, 07:04 AM   #3
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Re: Does your loved one "know" they have dementia?

Emily, I think in the beginning they know something is going wrong and perhaps have moments of clarity when they do realize... or at least I think Mom did. After the early stages they do not understand nor can they remember so there is not need to repeatedly teall them that they have dementia.

They know SOMETHING is wrong but do not have the cognitive functioning to realize it is in their own mind. Therefore in their reality it has to be somebody else that is creating the problem. If Mom doesn't remember where she put her pocket book it is not like you and I not remembering where we put it. We have some recollection of the pocket book or doing something with it. They have no awareness of the pocketbook at all... so how could they have lost it. If you were to somehow explain it so they being to understand their cognitivie abillity is not functioning well enough to process the information. If you were to punch through that wall they would almost immediately forget it. So five minutes later you would have to have the same conversation. Being given such a horrible diagnosis to process is bad enough once.... you don't want them to relive that shock every time you tell them.... over and over.

So it is important to remember that they are no of our world. They do not think like we do or see things like we do. Their reality is as real to them as ours is to us. You are not going to convince them that what they have no awareness of is true and what you do convince them off is going almost as soon as it enters their head. Then they are back to the their reality.

Mom was aware at first that something was not right and it might be dementia. She made sure all the legal papers were in order and was intellegent enough to hide her dementia under the disguise of depression. Somewhere along the way she forgot that was a disguise. Now the depression is Dad's fault and our fault and there is absolutely nothing wrong with her. Yes, she talks about her Mom with ALZ, her sisters that have had ALZ, Dad's dementia, and she reads books on dementia to understand THEIR condition... but she has not awareness that she too has ALZ! The few time she has been told, heard, or read that she does her comment is.... "I might be a little bit forgetful but I am not THAT BAD!" Then she walks off and comes back with no memory of the conversation.

Caring, I gave up questioning and expecting a cognitive answer. Don't look to the loved one to give you the answer but look at what is going on, what your Mom likes, and what she might need. If I ask Dad if he wants a drink he will tell me no. If I go get him something to drink and hand it to him he will smile and drink it. I know he is thirsty, not because I ask him and he said yes, but because I know he has not had something to drink in several hours. You learn what pleases them. With Dad, it's ice cream. No matter how aggitated he becomes a bowl of ice cream make it better. With Mom, you let her pout out her episodes and without invitation, tell her you are going somewhere that I know she wants to go. She usually follows. In no way do I argue with them or tell them that their reality is wrong.

Also your emotional state and expectations transfer to your loved one. If you show up at ease, with a smile on your face, and a sense of confidence then you Mom will be aware of it. If she is fearful in her strange world and you are crying that validates her fearfulness. Yes, I sometimes faked that calm cheerful confidence I show in the presence of Mom and Dad but more and more it has become real. It is a self fulfilling prophecy. The more confident I am the more success I have and the more confidence I feel.

I am off to close up the cabin for the winter. Rather than a week of fun like Chris had we are doing it in a day... ARG! I will be back home tonight

Love, deb

 
Old 11-07-2008, 07:07 AM   #4
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Re: Does your loved one "know" they have dementia?

My mother never knew that she had Dementia. I didn't see any point in using that scary word, Alzheimer's, and neither did her doctor. We were always reassuring. You are OK, you just have some memory problems. Senior moments. We have the Home Health Aide with you so that you won't get lost when you go out. You need a little help, and anyway, Medicare pays for it. (they didn't, of course, but she would never have accepted us giving out money for her care!).

By the time she was at the NH she blamed it all on her broken hip, which was fine. My brother often reassured her that as soon as the hip is healed, as soon as you can get up and around again, you will go home.

Finally, lasting abut a year, Mom felt at home where she was. She stopped asking about home except in connection to her mother, who died in 1956.

At first Mom sometimes complained about the 'crazy' people there, but soon she didn't seem to notice.

I would continue to say "The A word" if there is any chance of her understanding what is meant. Why put the burden on her, there is nothing she can do about it.

Love,

Martha

Last edited by Martha H; 11-07-2008 at 07:10 AM.

 
Old 11-07-2008, 09:29 AM   #5
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Re: Does your loved one "know" they have dementia?

Hi Emily!

Just as this disease manifests differently in each individual...such as time frame for stage progression, previous health condition of the loved one, personal relationship one has with the individual...and so forth........each one of us can tell you what worked well for us. How YOU decide to approach this with both inlaws will be a decision that can easily be adjusted if questions keep being asked.

Being one of 6 "kids"...and the only one who stayed here in the town where Mom was...I guess, being the oldest of 2 daughters too...I had much more contact with Mom. She was closer to my kids than the other 12 grandkids.

When 3 brothers moved her an hour away, supposedly for a 3-month stay at a NH while waiting for a broken hip to heal...the challenges she felt, and questions bouncing around her head seemed directed at me more than the others.

I knew she was scared! She was very aware of changes in her actions and speech. Sometimes, we even laughed together until tears came at "words" that simply appeared in her speech as she talked with me. Nouns were the first words that seemed to escape...or be replaced by curious words. SHE KNEW...AND WAS SCARED! They DO know...they are usually very good at keeping little secrets about this, but they are aware.

After the 3 months in the NH, Mom was moved to a locked Alzheimer's facility. We all realized there was no going back...her big old farmhouse waited to be emptied. (someone mentioned "hoarding" a while ago...yes, this also goes along with Alzheimer's)

A month or so after being there, Mom came right out and asked me what was wrong with her. Everyone else had danced around the truth...some of my siblings even lying to her about going home again...but she knew I'd give her a truthful answer...and I did. We held each other and cried for a long time. Then she leaned back and asked if I'd bring her some information on what lie ahead. That was 10 years ago...and I would do the same again.

I went to the Alzheimer's Association and picked up several packets...one even written to the person affected...and we read them together. I do realize this would not work for every one of us...again...each individual (and caretaker) is so different in their approach to this disease....but, during the next few months...while Mom still was able to process this information...we became even closer. I was the only one she could talk with about her fears. One brother seemed to judge her harshly...me too, because I was able to "go to her world" and understand her.

After a few months, of course...all this was forgotten...and her strange behaviors and broken sentences increased. I found if I simply picked up one word I recognized in those garbled words, and repeated it back to her...she thought I knew what she was trying to say!

If it were me at your MIL Dr. appt...I would give the receptionist a written description of her actions, your concerns, etc. as you sign her in. Ask questions on this paper that he can refer to and answer in front of your MIL. She will most likely hear all you say...and feel a little betrayed if she is talked about like she is not sitting there. Somehow...if "the words" come from the Doctor...they seem to believe them....this worked for all 3 of my loved ones afflicted with Alzheimer's.


caringsister54.....another strange thing I've noticed in this disease that Mom's frustration and disability to get her words out seemed to INCREASE with certain individuals...like she was trying harder to "please" that person...and her efforts always failed.

Sure didn't mean this to be so long! So many questions keep being brought up of situations I've been thru many times! Hope this helps......Pam

 
Old 11-07-2008, 12:04 PM   #6
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Re: Does your loved one "know" they have dementia?

They are very aware of the changes that are going on in their mind and their body. It depends on when AD is diagnosed and their mental capabilities at the time of diagnosis. My wife's Vascular Dementia was found very early, we were able to explain to her that there were changes going on in her head. We also explained to her that she was not going crazy as AD is a physical condition and not a mental condition. She also understands she has to take Seroquel to make her "Sweeter" and that she must take her AD medications every day. I fix them for her during the day and at bedtime, she takes them willingly.

As the disease progresses she seems to be much more comfortable at home in her own surroundings, she seems to get along better with me than she does with her children or other people. She doesn't do too well in the outside world. She in now aware that she has a difficult time out in the world and willingly accepts all of the help I can give her.

It is a good idea to let the Neurologist know ahead of time about the problems she is experiencing. Her Neurologist has his exam rooms arranged so the patient sits on the end of table facing him and I sit in the corner behind her out of her line of sight, if she fibs to the Doctor, he can see me and I can shake my head yes or no if I need to. I don't talk to the Doctor in front of her. We don't use the A word but do use the D word, it doesn't seem so harsh.

Last edited by jim816; 11-07-2008 at 05:36 PM.

 
Old 11-07-2008, 04:19 PM   #7
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Re: Does your loved one "know" they have dementia?

My DH was diagnosed at an early stage, when he was in his 50s. He's now in the 7th year, and is severely impaired. He has limited speech, but still knows who I am. He can't turn on a lamp or tie his shoes, but is able to dress himself if I give him clothes, he will take showers, etc. He tries to be as cooperative and trouble-free as possible.

He was diagnosed early enough that we were able to do some planning (hard to believe I picked "Beginning" when I registered for this site, so long ago...at the start of his illness). We talked about end-of-life and other issues. It was devastating, as with any terminal diagnosis. We don't have any Alzheimers in either of our families, so neither of us really understood what was going to happen.

He may not know my name anymore (I'm now "Mum" if he calls me anything at all), but he knows he has Alzheimers. He will even point to the tv when there's an Alzheimers' story. When he recognizes that he's either done something odd or that he can't do something anymore, he starts to get frustrated. I've found that he calms down when I tell him not to worry, that it's his "illness" and he hasn't done anything wrong.

I know that we're relatively lucky, since he's understood that he's ill. We had participated in a national research program until DH became too ill to respond to questions anymore. The research program told me that there are three categories of dementia patients: the ones who know they are ill, the ones who are oblivious to their illness, and worst of all -- the ones who think they're just fine and that rest of the world has gone crazy. The latter two categories of patients aren't going to grasp the fact they are ill no matter how many times you tell them.

Personally, I think that telling a patient the diagnosis is only useful if you're able to use the information for planning purposes, or the patient is worried about losing their mind (in which case knowing a diagnosis can be a relief). If the patient isn't going to grasp the diagnosis or is going to be terrified by it, I would avoid telling the patient that he or she has "Alzheimers." Alzheimers is just too scary a diagnosis. You could describe it as a memory illness, a problem with processing words, and so forth, if the patient needs or wants to know what's going on. You are likely to find that the patient is satisfied with a simple explanation.

Last edited by Beginning; 11-07-2008 at 04:25 PM.

 
Old 11-07-2008, 06:54 PM   #8
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Re: Does your loved one "know" they have dementia?

My Mom's favorite line is: "Gee I must be loosing it". She will constantly say that when she forgets. If I ask her something and she cannot remember the answer or how to answer the question she will say: I don't know or can't remember and then will say I must be loosing it. Whenever words or things slip from her mind she will get mad at herself and say I don't know what's going on with me latley. I was never like this before. I usually tell her its ok when she cannot tell me the answer to something. I tend to make excuses for her lapse of memory and will say that's ok if you don't know. Or, you must be tired that's ok. I know she knows something is just not right Once she was reading her prescription bottle of Aricept and after reading it she said to me this is what they give people that have Dementia. She started to cry. I told her remember the Dr had you take the memory test? She said yes the Dr told me I didn't do very well on it. I told her thats right you didn't. That is why he put you on this medication to help with your memory. I have a tendancy to make little of the whole thing. I feel what is the sense to telling her to much it will only upset her. You have to go to her world as opposed to trying to make her come to our world that is the key to being able to deal with this disease.

Love Pauline

 
Old 11-07-2008, 08:33 PM   #9
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Re: Does your loved one "know" they have dementia?

My mother knew that she had the disease in the beginning when she was still able to comprehend the medical terminology. She was with dad when they gave her the diagnosis. The two of them stoically bore the brunt of it until Daddy told me at Christmas-8 weeks later. Merry Christmas daughter...

Yes mom understood in the beginning, but soon lost the idea that she was ill. I don't know that it entered her conscience that she had A. but she knew that she was not right and it horrified her that she was no longer able to write checks and take care of the normal day to day things that she had done for their entire married life. I know that this caused heart hurt for daddy that was almost unberarable also. And he had vascular dementia. So I guess that my parents were hit with a double whammy... How sad..

 
Old 11-08-2008, 05:40 PM   #10
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Re: Does your loved one "know" they have dementia?

I love you all! I knew you dear ladies would come through for me! I'm learning something everyday. There's clearly no cut and dried answer to this, but all these good replies help me to understand better how to gauge what I tell her. I'll take it a step at a time and tell her only what it seems will help her as it comes up.

I have another question, but don't have time to post it right now.

Bless you, every one of you!

Love, Emily

 
Old 11-09-2008, 03:34 AM   #11
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Re: Does your loved one "know" they have dementia?

Dear Emily,

Keep asking, keep coming back.

This Board was a lifeline for me, especially during that last year before I closed up Mom's apartment, and she went to live with my brother and I moved to Indiana. That was without a doubt the worst year of my life - Mm getting lost, bizarre behavior at home after I had left for work, constant worry, insomnia, acid refulx, desperation on my part - what can I do, I can't take any more of this!

Then I found HB and was given life saving advice. Your advice helped me to make good decisions.

I still think occasionally that if I had stayed with her in that apartment longer, she would not have moved to my brother's house, not fallen down the stairs, and postponed the NH for somewhat longer. But I was out of gas -- I was a wreck myself, after living for 5 years and 3 months with Mom, watching her deteriorate, until she changed from my best friend to a person who did not quite know who I was ...

That's why I am still hanging around even though my Mom passed away last December - I hope to be able to give something back for all the help and encouragement I received here.

Love,

Martha

 
Old 11-09-2008, 06:32 AM   #12
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Re: Does your loved one "know" they have dementia?

And I am very glad you stayed Martha. I was in the same place that you were when I arrived here. You were one of the ones that gave me the direction, advice, and encouragement to make better decisions.... and for that I will always be thankful. We do need those of you that have gone before to help those of us that are lagging behind. I just hope I can return to someone what was given to me....

We are all in this thing together Emily. We can, do, and will hold each other up. That is what made us care givers and caring givers....

Love, deb

 
Old 11-09-2008, 10:49 AM   #13
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Re: Does your loved one "know" they have dementia?

Yes, that's exactly what we who are new to this need: those of you who have already been through it and can give us insight and wisdom, as well as being a shoulder to lean on. You're such a blessing, all of you who have stayed around! I hope I can give back at some point. Right now, I'm mostly a "receiver," but I guess givers can't give if there aren't receivers, too!

Emily

 
Old 11-09-2008, 07:12 PM   #14
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Re: Does your loved one "know" they have dementia?

My insight to this is very recent. I don't beleive they know they have anything wrong with them when they have progressed to a certain point in the disease. My dad is to the point where he thinks people are trying to trick him or play games with him. I think sometimes we want to tell them they have Alzheimers so that we can validate it for ourselves. My dad is in the hospital waiting placement in a nursing home. I visit everyday for about 4-6 hours and as of Tuesday he will be there three weeks. He doesn't usually know my name but he recognizes me each time I arrive and asks me about mom and dad. I think he is asking about his own mother and father. Sometimes he says here comes by daughter when I arrive. My sister, brother and two nieces visited today and I was trying to find out if he knew them. I know he recognizes them but can't recall names. He thinks my brother is one of his brothers instead of his son. When I asked him today if he knew my nieces names he told me to ask them. He said, "they should know their own names, why are you asking me, ask them". He still hides his confusion very well. I don't know how he comes up with the things he does. Today he was telling us he went for a drive and took a few people with him. He said they had a very good time. I'm glad he had a good time even though he never left the hospital.

I try to get him exercise everyday so I walk him up and down the halls. Today as we took our walk at the end of the hall was a nurse standing at the nurses station. I haven't seen this particular nurse on our floor before today. He started saying hello to her in a very loud voice and got extremely excited. I was a bit embarrassed. As we approached, the nurse told my father she was so happy to see he recognized her. I couldn't believe it, she was a person who lived on his street when he owned his home and he remembered her even though he hasn't seen her in years. He didn't know her first name but he knew her last name. I was shocked. I didn't recognize her and he did. What a strange disease. I truly believe it affects everyone differently. Many of us see a lot of the same issues but some are unique to the individual. I don't tell him anymore that he has Alzheimers disease I simply go along with everything he says and try to make sense of it. There are times I can't follow his conversations at all, I just agree or say "really". I just want him to be safe and as happy as he can be.

This is the best site in the world and I am so glad I found all of you.


Gloria

 
Old 11-09-2008, 07:43 PM   #15
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Re: Does your loved one "know" they have dementia?

I read your post with recognition Gloria. My Dad is much the same. Recently he didn't know his sister but called his daughter by his sister's name. They do resemble each other. Dad often talks about "Mom". We have to ask if Mom has cows to milk to figure out which Mom. He will frequently ask if his brother has already eaten and left. They lived together in the 50's. He frequently tells people I am his "oldest" but never calls me by name. Yet he remembers the names of people he worked with 30 years ago. Sometimes his thought processes amaze me but he never remembers his conclusions after he says them!! I have also heard those cover stories.... You ask them, why do you ask me, how should I know, etc.

Dad's dementia is vascular and he never seemed to be aware that there was anything wrong with him. Of course VD is more of a step off a cliff rather than a slow slide down. He will argue that he is perfectly fine.... as good as he ever was... so we just go along, divert, or otherwise deal with whatever is needed without being confrontational. He's a sweet heart until you rile him up so we do NOT rile him.

You are so right..... each is different.

Love, deb

 
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