How do you cope when your loved one doesn't know they have dementia?

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My 64 year old grandfather was diagnosed with dementia last year. However, our family doctor told me and my mother (his daughter), and we haven't told my grandfather. We weren't completely sure he had it, which is one of the reasons we haven't told him. However, the last 9 months have been really hard and stressful. We are certain it is dementia, and he doesn't know he has it. He is taking Aricept, but he just thinks they're everyday pills. I think I have heard him say they're for his memory, but I don't think he quite knows what he has. He has good days and bad days. He can remember things from years ago, and days ago, but not so much the current day, like, what he had for breakfast. He can't remember phone numbers, or his pin number for his banking information. Mine and my mothers concern with telling him, is that it could worsen the symptoms. I know it's not fair that we keep it from him, we just aren't sure how to tell him or if we should. Should we have our doctor be in the room when we tell him? My mother and I just need some information on these topics. Thank you for your support and information.

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Well, is the word "dementia" really all that important? He knows he has a memory problem, and that's more insight than a lot of people have. Maybe he dose not realize how bad it is, and at least comunicating that he has a really, really bad memory problem and needs a lot of help because of it would make sense. But my dad would not even put up with someone telling him he was "confused," and mom knew there was something wrong with her brain but NEVER considered herself to be not in her right mind even when hallucinating...she always kind of looked down on people who were confused or "just not with it." I'm not sure we would have ever convinced her she had any kind of "dementia" anyways, but we talked about cognitive or brain problems a couple times, and when she had a stroke we told her that; I think she might have understood to a degree, though she never stopped assuming her glasses needed changed when she could not see well or find words because of that. I did mention Lewy Body when it was brought up, though they decided she did not have that, and we did several times tell her she had vascular Parkinsonism and that's why she was on the Sinemet.

Now if the word is important because he will inevitably hear it from others, or because it will be his only cue to make arrangements that he still needs to make for POA and other supports, then by all means have a meeting. Probably let the doctor tell him, so you can be there as support and reassurance that you will all still value him, and love him, and be there for him all the way.

I can tell you the fear of taking away hope or increasing depression could be realistic. I know my mom went downhill faster once she realized she actually would not be able to return to her independent living in her own home, even though she would still frame it terms of not being able to walk, and still said, "well, maybe you can find me an apartment here..." It's hard to know what is really right and best at times, and I was suprised that I found myself not necessarily telling Mom everything we knew was going on, but just what we thought she could absorb and would be able to grasp and use in some way. But I could not bring myself to tell her some things that I could tell would be more devastating news to her that she might not be able to handle. When she had a heart attack - actually her third one, but the first one that was painful for her - and her coronary arteries were found to be inoperable, she asked if it meant she could die, and I did tell her yes, it could, though the doctors were quick to say some people lived quite a while with medications, etc. with it, and we would hope for the best. And yet, I never quite told her that we actually had to "sell" her house - only about a year and a half after the fact, when she said she did not think she could go back and be on her own there again, I told her that another family was living there and taking care of it for us, so she did not have to worry any more. (Then of course she worried that they would be upset if she ever did get well enough and need to move back in.)
As vstefans says, It's hard to know what is really right and best. Like many aspects of caregiving, there is no one-size-fits-all answer. My mother's primary coping mechanism all her life has been denial. Why expect her to change now? I think she probably has at least mild cognitive impairment now (age 91) but we have enough services arranged for her that she is OK living on her own. If that ever needs to change I think we can easily blame it on her mobility issues due to arthritis. Why worry her with something she can't do anything about?

On the other hand, if my husband has 3 worry cells in his body I've never seen him exercise them. He was an engineer. He wants facts. The type of dementia he has fluctuates from day to day, and when he is "with it" he can't help knowing that something is radically wrong with his thinking ability. Keeping the truth from him would be just as cruel and upsetting as forcing the truth on my mom. Since he was first diagnosed he has known that he has Lewy Body Dementia. It is something of a relief to know that there is an explanation of the weird things that happen. We have kind of personified the disease, as if it is a force that has come to live with us. We call it Lewy. If we play a board game and he has a lot of trouble with it I can say, "You know, I think maybe Lewy is playing your turns today. Let's try to sneak in a game tomorrow without him," and we can laugh at it. Or I can say, "I know that you can carry a full tray very well, dear. You've done it for many years. But I'm worried that Lewy will get mischeivious and make you spill something. Let me carry this across the room for you." None of the dumb mistakes or memory lapses or clumsiness is my husband's fault -- we know he is a smart man with a good brain. But Lewy doesn't always let all parts of the brain work right now. As a caregiver, this approach is very much easier on me. But if I thought denial were best for him, that is what I would do, without hesitation.

I don't necessarily share every detail with him, nor does he seem interested in knowing. I held a family meeting this summer. I explained to him what we were going to talk about, and that he probably would be "bored" with that much talk about Lewy. He agreed. So we met without him and he joined us for dinner afterward.

I don't think it is a question of what is "fair" to your father. It is a question of what is in his best interest. You and your mother are the people who can best predict his reactions, and know his preferences and coping style best. It is a very hard decision to make. Discuss it with your mother. Give it your best thinking, without regard to what you "should" do but with what is best for your father in mind. Make a decision in love, and then move forward. Don't second-guess yourselves or beat yourselves up with "what ifs." Do your best. Move on.

I wish you the very best in this journey.

By the way, since your dad has clearly declined since the original diagnosis, it may be a good idea to have him see a specialist such as a geriatric psychiatrist or a nuerologist who specializes in dementia. Depending on symptoms, there may be drugs in addition to aricept that would be helpful. There is no cure, but there may be opportunities for improved quality of life.
It is such a depressing diagnosis, when I told my mother I hoped it would help her come to terms with her forgetfulness and it did for a little while. The stress of hearing it was very hard on her though and I am not sure it was worth it at all, now she has forgotten anyway.

I understand your dilemma but there is no easy or right answer, I don't think it matters that much now. Good luck with whatever you decide to do x
My mother had dementia. There was really no point in sitting down and having the "Mom you have dementia" talk with her. It would distress her for a few minutes, then she'd forget the entire conversation. The distress would come about (albeit shortlived) because there was nothing she could do about it. Elderly dementia patients respond better to problems that can be easily solved. As far as memory is concerned, no short-term memory is actually an inability to cognitively store information -- they can't log it in to start with, much less call upon it later, as in remember it. There are some things you can do before the dementia progresses. Whenever you want to reason with your dad, take his hands in yours, look him in the eyes, making sure you are at eye level with him (not standing over him, which can be percieved as threatening) and discuss whatever issue is at hand. Then, don't become impatient when you discover that nothing sunk in, or stuck. Also, realize that most of what a dementia patient does from day-to-day, hour-by-hour, and even minute-by-minute is SURVIVAL. Everything they say and do is in survival-mode. It causes them to be extremely self-centered, but don't think of it as selfish; it's simply their way of surviving, or their attempt to make sense of a world that is becoming increasingly confusing to them. One other thing, research every medication that is prescribed. If I had done that 2 months ago, my mother would still be alive and thriving (inasmuch as a dementia patient can thrive) today. Zyprexa was the drug that killed her. God, I miss her.
To tell or not to tell.....that has been difficult for me as well. Being an only child and living 3000 miles away from my Mom makes it more difficult to communicate with my Mom, who also suffers from dementia.

Last year, before she had a brain hemorrhage, she used to say I have "bemuddled brians" and would call me in the middle of the night and be afraid because her lips were numb. I suspected a problem with her brain. After she called with symptoms of a sroke, I made the trip to be her and get her help. I had to call 911 from Washtington State to get her help in Florida!

It is been a year and five months since that first episode and she has been in and out of the hospital and rehab a couple of times since then. She now doesn't remember any of it happening. I eventually had her moved to a nursing home because I feared for her safety and well being.

I continue to tell her the story of the past year and a half so she understands why she is living in a nursing home. Unfortunately, since she now feels physically better, she wants to live on her own. She can't accept anything ever happened to her. I call her everyday and the conversation is always the same. Help me get out of here, I hate these people and food is awful. She won't let anybody touch her. Thank goodness we did all the POA, Health care surrogate and bank stuff before the first stroke!

I have had her examined and evaluated by a geriatric physchiatrist and her regular doctor and both agree that she cannot function independently. I don't know what if anything they told my Mom. They don't communicate with me at all. Her original doctor wrote up a report saying that she has dementia and I used to consult with him before she moved into the nursing home.

I continue to reassure Mom that she is not crazy but the strokes (actually had two of them) affected her memory and speech center of the brain and that is why she gets confused sometimes and can't find the right words to say. I know deep down she is angry and frustrated about her condition and feels helpless to help herself. She wants so much to be her "old self". Me too. Good luck. There are are no easy answers as the previous poster mentioned.
Hi, I don't have much to add, just a thought. My mom has dementia and it is getting pretty bad. She has lucid moments, when she knows that she can't remember things, hears things, sees things, etc. Sometimes I think the lucid moments are the worst because there's nothing any of us can do. I don't think your dad needs an "official" diagnosis to understand that things are changing and getting scarier. Love and support are about the only things we can really give them. Also, would he remember if you did tell him? or is it something you'd have to keep reminding him of?
My brother and I have felt it very important to keep my mom in the loop about her health issues. She has always valued her independence and we feel that being involved helps her cope. She knows that she has a form of dementia, however, we are still working on getting a firm diagnoses. She has hallucinations of there being people in the house so she likes to hide things. I am analytical by nature so having to deal in her reality is difficult. I agree with the other posters though as to making sure you have his financial and medical POA's covered before he gets worse.
My wife is 79 and very effected by dementia. My opinion is that there is absolutely no purpose in explaining her condition to her. She is perfectly happy the way things are even though she cannot even sign her name, dress herself oreven remember that her mother died about 30 years ago. There is no point in telling her how bad off she is and I have no desire to upset her. Suppose that you discuss your dad's condition with him, will he grasp it and if he does will he (or you)feel better?
You don't need to tell him, in his own way he knows!! This is just as scary for you as it is for them!! Spend your time learning about dementia and learning ways to help them cope. Enjoy what they do remember and sometimes they twist and merge memories, don't correct just believe it as much as they do!! But remember just because they didn't remember what happened 5 mins ago, dose not mean they wont remember it a couple of days from now!! Its crazy how this effects the mind!! All you can do is make them feel as safe as possible.
My mother had nightmares on Aricept. I would take him back to the doctors and see what other medications that they have that would be better for him. My mother was afraid and said there was a man in her room at night. Maybe he is not sleeping right and it is affecting other parts of his daily life. Some people won't tell you when they are seeing or hearing things. Please take him to a doctor that specializes in elder care if you are not taking him there. It will only be easier for all of you. I don't give my mother that medicine any more and I told the doctor. She has a different pill and a patch that she changes daily. She is almost 95 and mostly has a good memory and I am here mainly to see she gets to the doctors, gets the best care and make her meals and take her to see her friends and club meetings. She is very high functioning, but I don't think she would be if she couldn't get her sleep. I know I am not when I don't sleep. Please, this is just my experience and see if it helps you to consider what I have said. Talk to the doctor. I hope this helps.

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