Does your loved one "know" they have dementia? - Alzheimer's Disease & Dementia Message Board

BlueAtlas · 11-07-2008, 06:19 AM

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

caringsister54 · 11-07-2008, 06:50 AM

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.

Gabriel · 11-07-2008, 08:04 AM

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

Martha H · 11-07-2008, 08:07 AM

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

petal*pusher · 11-07-2008, 10:29 AM

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