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He knows he has a problem with his memory and asks me why. What should I say?

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There is no one-size-fits-all answer.

We never told my mother that she had dementia. Even her geriatrician did not use that word with her. Her chief coping mechanism all her life was denial. (Don't knock it. It worked for her.) Why would we expect her to accept this diagnosis? She knew she had memory problems, and we left it at that.

My husband knew from the very beginning that he had Lewy Body Dementia. He was a mechanical engineer and cause-and-effect was critical in his world. For him, not knowing what was happening to him would have been far more stressful than hearing the truth. I am so very glad he could accept that, because it made our discussions about his care much easier on me. We personified his disease as "Lewy" and I could hug him and say, "I think Lewy gave us a particularly hard time today. Let's hope after a good night's sleep he'll be less active tomorrow." Because he knew what he had he decided to donate his brain for research. That was very important to him, and he always asked if I had "his papers" with us when we traveled. (Odd, he might not remember where we were going, but he remembered that if he died there he wanted his brain donated!) The only time he forgot this diagnosis in the ten years he lived with it was in the middle of a difficult episode.

He had the same geriatrician my mother did. (I want her, too, in a few years!) She talked openly about his dementia with him.

It was good that I could assure him that yes, he was losing some cognitive abilities, but that I would never abandon him and would be there to compensate for his losses. He would go into an examining room and say to the technician, "I have Lewy Body. Jeanne is my memory, so that's why she needs to be here, too."

One size answer does not fit all! The answer must custom-fit the individual who has dementia.

(BTW, I would want to know.)
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I feel the right thing to do is to get his doctor to tell him. Make sure u r in the room.He may not believe u and get upset with you but if his doctor tells him after making a correct diagnosis which is documented that is better in my opinion. You would be wise at this stage to contact the Alzheimer Association. They have toll free number and have branches everywhere. They offer wonderful support groups for him and you. I have learned so much from them. Good luck!
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Killerben12345, How soon the information is forgotten is a very individual thing and depends upon the stage that has been reached. As I've written previously I am for the most part cognitive with times when I remember very little. Retrospectively and as a carer for someone with a dementia I know that I will request the same info over and over. I would hate to think that people would cease to tell me things because I would forget what I'd been told. It's very scary when you can't remember something and you have to rely on others to `fill in the blanks.' To then be denied that info, because I wouldn't retain it is even scarier. Also altering the phrasing of a reply can at times allow the brain to recapture some part of the lost memory. As in the post about the Father whose son sent him a letter `from his previous employer' rather than continually reminding him that he had retired. Phrases in that letter touched the elderly man and settled him.
I'm making sure at this stage to make the special people in my life aware of how I'd like to be treated as I deteriorate. I'm lucky I know to have that option but I would urge everyone to think about what they would like and write it down in case the worst does happen.
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Out of respect for your husband he does have the right to about his dementia but it is up to you. But in my opinion I would not because he will not remember what you said to him the next day.
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No, because if you do he will forget what you said the next day, so you will just be wasting your breath. I understand that he is your husband but this is dementia you are talking about
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Was present when the doctor gave him that diagnoses? What was said? My husband who is in the beginning stages of Alzheimer's knew why he was given the PET scan and other tests. He has told all the neighbors and his family he has it. We called up the Trust Attorney to be sure everything was done legally. Have you and your husband done these things? If not I urge you to do it now while he can still reason. Anyway, the doctor told him and me what the diagnoses was. As my husband said, It was a relief to put a name to what was going on in his mind.
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My mother is aware that she is losing her memory but I have not called it dementia because she always said she was afraid of being "demented" when talking about people in the nursing home where she had rehab. She says she losing her memory. I say yes you are forgetting more, but you have over 90 years to remember. That makes her laugh. I also do things to help her like writing things down. I tell her she is safe where she's living. I think it depends on the person and you know best what is acceptable.
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I also found a "gentle" way to phrase telling my husband what was wrong with him. I told him that different people's mind age in different ways. His mind was aging in a way that made him often forgetful. The assurance that I was there with him and for him to help him remember things worked for us. After all in our younger days, when one of us was sick the other helped with food preparation, giving medicine, etc. Of course, eventually this ceased to work as he had too much brain deterioration to know what was going on. I also told him that by living with him for over 50 years, I saw changes in him that he could not see. I think it came down to his putting trust in me to be telling him truth. Finding the words to tell him comes from your knowing him well. Take care and know you are not by yourself, but one of a group.
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I explain to people that I have a form of Dementia and it is called Lewy Bodies. I'm often told that people have never heard of it only knowing of Althzeimers. Another sadness for me is when people are shocked to discover that I'm a `Dementia Buddy' at my local hospital. So much more needs to be understood about this condition. I've had LB for at least 15 years and there have been times that it's progress has speeded up. Like when I was widowed 10 years ago. For the most part I'm still cognitive, though I have bad times. While I'm able to I'd like to go on being helpful in my community. Living alone I think this is helping me stay connected to myself as well as people at large. There is not a one pattern fits all to this disease. But understanding, compassion and desire to support where possible all help Carer and Cared for.
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Maybe once or twice. You can tell him, but there may come a day when he cannot understand or even remember that he has a disease. At first my mom did, or seemed to understand. Now she doesn't believe it anymore. She thinks she only forgets words. The more the disease progresses, the less she recognizes it. The doctor had to help me see that. Mom's intelligence and ability to argue caused me to misinterpret some of the clear signs of dementia like not being able to stay on subject. I thought she was doing that on purpose. Be good to your husband and find other things to talk about. Protect yourself from useless banter about the dementia.
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How much you say, or how you say it depends so much on the stage of his memory loss. And you know his personality better than anyone. You know how to be straightforward but word it in the gentlest way. "Memory loss", or "age-related memory loss." Alzheimersreadingroom.com often uses the term,"deeply forgetful."
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Its really about what concepts are easiest for him to understand.  Make a decision on how you want to frame the information.  My father in law knew something was wrong when he was still on his own, and continued contacting us for "help" all the time. After several months of us taking turns as live-in support and gaining a solid education of where his needs were, we moved him into a memory care home (best thing ever for him!), He eventually understood that he had "hired all these people to help him" -- he couldn't keep track of who was a nurse or aid or culinary, but that they were all "helpers" that he had hired, much like his previous cleaning ladies etc. That made him feel he was still in-charge, but just getting help when he needed it. He also frequently confused his memory care home with a hotel/resort since his room was regularly cleaned, bed made, clean towels etc. We supported this concept because he was so comfortable with the idea. When he asked about money, we told him everything was set up with the bank for automatic payments -- and he said he was so relieved not to have to worry about the bills all the time! As he lost his management skills, he was more worried about "failing" at something which created a lot of his anxiety. Once he understood it was "being handled by professionals" he relaxed a great deal and soon quit asking completely.
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Just tell him he is slowly loosing his mind, I think if you make something up or flat out lie to him that's just going to make it worse in the long run.
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Agree with LucyCW. It is best to know and make plans accordingly. Some people feel they would not want this information. However, if the person still has rational periods, the knowledge will help them plan for future. Better to know and be able to voice wishes for treatment. Also need to put financial house in order.
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Joannona, like most others who posted before me, I agree that yes... you should tell him. I assume you had a medical evaluation and am kind of wondering why there would even be a question as to why it would be better to not tell him at this stage. There may be a point in time when he won't understand his illness and there may be a period of his denial of his dementia down the road as well. You may have to skirt over the issue at times, especially if he becomes argumentative. If that happens, it may be best to just agree with him that he is "fine" but "for now" we are just going to____________. You will find out how truthful you need to be as you continue on your dementia journey. Best of everything to you.......
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Please don’t be afraid to use the word dementia. I wish that it was used more than Alzheimer’s, which is only 1 form of dementia. If we use this word more often it will be more understood.

By being honest with my husband it was easier to be out in the community. When he was struggling trying to communicate with someone I could say to the person, “He has dementia”, and often they would be more patient. There are other members of my support group that can’t do that. They have business cards that say the person they are with has dementia. Thank you for your patience. The cards can be discreetly handed to people. They work wonders.

I agree that if you think he will understand then tell him. If he is a fighter he can be very empowered to take control of the life he has left.
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Yes Corinna, is perfectly right. The word '"dementia" is often used to say "out of one's mind" and it does sound offensive. I have taken care for 12 years of my husband, told him from the start that he had a memory problem, when asked why I mentioned Alzheimer and since then I have explained to visitors that my husband could not remember them because of Alzheimer in the presence of my husband who approved my telling. You see the difference? Alzheimer is a disease, dementia is a state of mind. As a matter of fact dementia is one of the symptoms of several diseases, it is not a disease. Help your husband to accept the memory loss making it sound as normal as possible, like: "some body get's it a little earlier than others", "I also sometime find it difficult to remember things" "it's an aging problem, better aging problems than the alternative" and always push him to remember, do not let him count on you to do it for him and keep his mind always alert with games and activities that will keep his mind busy. After 12 Years I still talk WITH my husband , not TO my husband but the D word has never been mentioned in my home by anybody..

Best wishes and remember, we are all near you.
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Please know that every person is different as to the acceptance or denial of memory loss. If your loved one is aware he has a memory problem, I cannot see any reason not to explain to him why in very light-hearted, gentle, understandable terms. Plus, he would probably feel more comfortable hearing an explanation from you than a stranger.
My husband has suffered 11 years with Alzheimer's and, as of last year, is in a nursing/personal care home facility. He has extreme changes in memory one day greeting me as his wife, however, 90 percent of the time he will ask me why he is there, who am I, do I live around the area, why do I come to visit him, if I have any family, etc. To explain to him in the most plain, heartfelt terms his condition and the role I play in his life would mean nothing to him. If anything, he would get upset and deny he is anything but a normal, intelligent person. Every individual is different. They are understandably very frightened when dementia occurs. They are losing control, independence, suffer confusion, their world is not, nor ever will be, the same. Joannona, I would attempt to answer your loved one in a brief matter-of-fact way, but do not dwell on the subject. You know him better than anyone---but please let him know he is not alone; many people forget and have memory problems. It's up to you how the subject is approached and how you feel your spouse will accept what he hears. Your question sounds as if you are just beginning the journey as a caregiver in the world of dementia. Please remember, you are not alone, be good to yourself and embrace each day. There will come a time when hard, difficult decisions will occur. Find strength in everything you do, be proud of your accomplishments, reach out and permit others to help, love and cherish more than you have ever done before.
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My mom and I have always been very close. At the beginning of this long road she made me promise to always be truthful with her, even if it is hard. I have tried to honor that promise. Do I fudge a little when she has a particularly confused moment and asks me where my dad is or do I tell her he is dead? If it is something that is going to hurt her deeply (again) I take the kinder approach because I see no reason to hurt her over and over and over. Usually if she gets frustrated with herself and says she is dumb I tell her no, she has a memory problem and it isn't her fault. It has nothing to do with her intelligence and we talk about how it doesn't help to get frustrated about it. My heart hurts for her though, because she knows what is happening and she knows what the eventual outcome will be. I'm very lucky in that she is still very high functioning and most of the time she is still my mom, but sometimes I get glimpses of where we are going and it hurts so much I don't think I can stand it....and then I take a deep breath and keep moving a step at a time. This is the hardest thing I've ever done, but I also feel very blessed that I can be here for her. Dementia or "memory problem" either way, we are in this together.
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I think the question is "How"to tell him, not If. I would gently tell him that he has dementia, something that comes with aging, and that is why his memory is fuzzy. I would not make a huge deal over it -- since, one, you can't do anything about it, and two, it will only make him feel worse. I would be matter of fact, but gentle.
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Yes, you can tell him about his dementia to answer his question.
You may find the need to answer his question more than once a day as he may keep forgetting he asked, but at least you are reassuring him by answering his question each time, while reassuring him he is loved and in good hands.
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How severe is his dementia? You can tell him as much as you can, but he probably won’t remember that he has dementia. So, what’s the point? I would joke with him that his brain has a lot of hiccups and it cannot be control. 😉
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My LO was told with me present by her neurologist. He said he didn't know what was causing it. Further tests were needed. Afterwards, she was sad and said that she just hated that she would forget her parents, since they were such good people. I told her that she wouldn't. (Even with severe dementia now, she still seems to remember them.)

I cushioned it by comforting her that we were going to help her memory loss with proper nutrition and care. That made her feel better. Of course, she soon forgot all about her diagnosis and most all other things about her life.
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My Mom has found the answer for me, no matter which explanation I offer her for her memory loss...she just chucks it up to 'old age'!
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YES!

I am dealing with this with a 96 year old DH and I sit and tell him what is going on. He not only has the right to know - I think it helps because I stress that it is normal at 96 to start being confused and to have age related memory issues.

YES. I have to tell him the same things a lot - it's ok, it's still conversation :)
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If he has been diagnosed with Dementia then tell him.
If you know the type tell him that as well.
He may not grasp it but he may.
And he may forget that you have told him.
I read once that it is possible that a person that has been diagnosed with dementia may have been "covering up" or "hiding" symptoms for as long as 10 years before others start to see little signs. If this is the case with your husband I am sure that he is aware that he has a problem and it may be a relief to put a name to it. Relief yes but frightening as well since we all know the progress and outcome.
Knowing what is going on he can participate as much as he can in early decisions.
How much does he want you to do?
What does he want you to do if and or when you can no longer care for him yourself or at home?
Do you want to do that trip that you have been putting off for years? He might be able to do it now but not in 9 or 12 months.
Does he want his friends to know? Or when to tell them.
There are a lot of questions I wish my Husband had been willing to answer but he would not talk at all about what he was going through. That made it difficult for me.
Also answer this...Would you want to know? Would you want to participate in making decisions that will become difficult later.
And a final comment. See an Elder Care Attorney get all the papers in order now while he can still make decisions. Expensive, yes but may save you in the long run.
And one last comment for you. Find a good support group and start attending meetings. I decided early on that one of the worst days I was having at that time will be equal to one of the better days I will have in a year. It is all perspective.
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Since he knows it, just agree that "yes at times you do have a memory problem" and I would ask his doctor "why", then give your husband that answer.
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I don't believe it is necessary to tell someone they have "dementia". Telling them they have memory loss occasionally is much more gentle. For some reason the word "dementia" sounds as though you are telling them they are crazy!!
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You owe it to him to tell the truth. Somedays he will understand and somedays not. However, you might be surprised as to how much he understands. My father knew from early on, and on more that one occasion he would comment on his poor memory.
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the truth is always best. some days he will get it, some he won't. there was actually a gentleman who wrote a book during his good days about how to deal with a person who is demented. he understood how he spent too much money on unnecessary things and in the book begs the family to take the credit cards away. ETC!
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