Should the patient be told that he/she has Alzheimer's?

JessieBelle -- I have that attitude, where if my mother prefers to stay home, watch t.v., whatever it is -- if it's not doing any harm, then I don't fight it. She is 84, has never been outgoing, is not very mobile, doesn't have a lot of stamina, so this is her comfort zone, and that's fine. The comments and suggestions from others can be annoying - "You should GET your mother to try/go/do ______..."

JessieBelle, I agree with it all! Only bi stay g one as I can't leave her. She has fallen a few times. She won't drink at all if I don't hand her the item. Everything is disintegrating before my eyes and it is tough! Today for her is a bad day, which in turn is my bad day. Must go now, she needs me to help.with her meal.....

antiqfreq, my mother is becoming the same way. It doesn't surprise me, because she has always wanted to be comfortable, sitting in her pajamas. She watches TV all day. She watches a religious channel in the morning, then Game Show Network and INSP channel in the afternoon. I know the names of all the Waltons now. :) She likes the old sit coms. She thinks the new ones are silly. As silly as the old ones are, she thinks they aren't silly at all. I think it is what Jeanne mentioned. She is familiar with them and the characters, so she understands the plots better. She could watch Andy Griffith or Bill Cosby all day... and often does. Yes, it drives me crazy.

I don't mention the D word to her, because it is upsetting to her. It is okay for her to tell me she is confused or forgetful. But it is not okay for me to tell her.

My mother spends a lot of time alone. I have felt guilty about this in the past, but am learning that she doesn't want me around her very much. She'll do what she can to avoid me -- like waiting until I'm out of the kitchen before getting her meal, so we don't even eat together. I've begun to wonder if the TV characters are her friends that keep her away from the reality of her life at the moment. I'm always saying, "Remember your pills," or "Remember your shot." I must sound like a tired old recording. And if I talk about other things, she never really grasps it. She avoids people in general -- no calls, shuns visits, doesn't want to go anywhere but church. She is probably controlling things to the small area that she feels comfortable.

Yesterday I worked all day while she sat. I mentioned it was sad to see her sitting all day when she could be doing things. I shouldn't have said that, because she avoided me like a plaque the rest of the afternoon/evening. Most likely I had ruffled her comfort zone. Maybe at her age and with her health, I should let her stay in her comfort zone and not mention it anymore.

Reading all these posts gives me some comfort and Hope I will make it thru another day. Slowly mom is just disappearing in front of me. As her caregiver I see it more than anyone. Our family is all in another state. She sees then once out twice s year. I can't get her out of the house. She rarely goes outside anymore. Does watch old tv shows better than new one. Can't keep up with a movie at all. She now doesn't want to get out of night clothes. It is getting harder each day. My biggest problems are with the personal hygiene. She hates to wash and won't let me without a fight. Thank goodness for this forum and now my girl who comes in one day a week to help with mom.

Jeanne, your mom sounds like a very sweet, lovely lady! Thank you for the great ideas, btw.

jlakhani, since she "doesn't understand what's going on in TV" she may do better with DVDs of old shows she liked to watch. My husband could follow those better since they have no disruptive commercials, they contain familiar characters, and he has seen the plot before. Short shows were especially good. He liked Hogan's Heroes and the Sherlock Holmes series and even old black and white Dragnet episodes. Would your mom like I Love Lucy? Lawrence Welk? Try one DVD of an old show and see if she can follow it. My husband also loved nature and travel DVDs. Looking at views of the Grand Canyon doesn't require following a plot. Lots of folks who can't follow a plot still enjoy sports on tv, especially if they followed sports in the past.

My mother did crosswords all her life. Now she can only do easy ones in large print, so we supply those. This isn't a time to start a new activity but a familiar activity with reduced complexity might work. A person who used to do 1000 piece jig saws might now like puzzles with 300 large pieces.

Does she like to look at photo albums? Both my mother and husband loved someone to sit with them when they did this, and both enjoyed it very much.

Social interaction is good, often in small doses. Chatting with a visitor for 15 minutes is usually pleasant and involves a different kind of engagement.

A change of scenery is often good. Folding towels on the patio or porch offers a nice change of view in good weather.

My mother seems to like sorting things. While she was waiting for someone to get her started on a beading project at the NH she happily sorted beads by color. I've given her a small basket of colorful socks that she can pair up and fold, and do it all over again the next day. Some people like sorting coins. I think I'll gather some buttons for Mom to sort.

My mother isn't reading books anymore, but she still enjoys her magazines, especially with lots of pictures. She has a few subscriptions and the NH has lots of them circulating around. She also loves catalogs of novelty items and nick-nacks, etc. Even though she hasn't had a yard for decades, she can laugh at silly lawn ornaments.

When any of her four daughters visit the NH we take Mom for a walk in the neighborhood in her wheelchair. She is interested in seeing gardens growing and noticing a tomato go from small green to large red and then be gone because it was harvested. (We have to point these things out to her, but she gets a kick out of it.)

You need to get into her world and try to figure out what might be interesting there.

I debated whether to tell my mother-in-law she has Alz. I decided to tell her when she asks me why she can't remember anything anymore (for the hundredth time) that her memory is either 'gunny sack' or in 'the crapper' or 'AWOL'. I know she won't remember what I tell her anyway, so I change it up. ha

I believe my mother does realize that she's experiencing lapses. However I think she's pretending that everything's fine.
The other issue I now experience is keeping her engaged. She does not focus on any activity. The whole day either she just sits quiet or repeats the same thing over. I have tried all means to keep her mind engaged but she won't. Tried to buy her books she used to enjoy reading. She doesn't understand what's going on in TV. I have no clue how to keep her mind engaged.

Telling my mother didn't go over well at all, but it was necessary at the time. At first, when she started 'slipping', I'd mention it to a few people who saw her from time to time, to get their take on things. She kept getting worse over the next year, and I sat her down one day and asked if she felt like she was getting more forgetful. She looked puzzled, and said "Not really." I thought that was interesting, because I read that many people do realize something's going on, but to this day, 2 years or so later, she believes that she's fine, and everyone else is trying to 'take her life away.'
Every couple of months over the past year or so, she gets another clue that she's not well. Last summer, her t.v. provider was switched, and the process of turning in her cable boxes, learning the new remote, etc., was so overwhelming for her that I had to take a day off work, drive down, and walk her through it. Last October, we had to pay for a 'cease and desist' letter from an attorney because of an unsound financial move she tried to make. She went to a neurologist for the first time in December 2013, and he prescribed Aricept. In March, 2014, her community library 'fired' her as a volunteer because she wouldn't comply with their rule of not using their stepladder, and she was getting worse and worse with organizing the books. And in June, her drivers license was suspended.
None of these events do anything to convince her that anything is wrong with HER. It's everyone else who's being mean, vindictive, 'stabbing her in the back' as she says.
Anyway, I'd say in our case, she needed to be told in order to get the ball rolling on more medical care for her, and we needed to get more involved in caring for her as well. But emotionally, some people handle it much better than others.

Cherylk thanks for the info.. The asking about the kids always perplexes me... I have a friend who's Dad wife has LBD and she's always talking about "the kids", watch out don't sit on them, etc.. But the women never had any children...

My mother often asks are the kids are here? Did they sleep over? Will they be eating dinner? My kids are 23 and 26!! And only one lives here.. But Mom has 7 children, 20 grandchildren and 24 great grandchildren!

I have been involved in many situations of this nature, having worked in nursing homes 40 some years. I can tell you there is no "blanket" answer to this because every situation is different. If it were my family member, I would very carefully, and only after talking to the Dr., have to Dr. with me to tell the person about the diagnosis. I would then ask if she/he had any questions; offer as much information as the person is able to process and be extremely supportive to the person's feelings. The only reason I would tell the person as soon as possible after diagnosis is in case he/she would want to make any arrangements of any kind including but not limited to, making a will, maybe even a video to say what they would want to say to those they love or anything they may want you to remember. Their memory is going to slip away, bit by bit and there is no cure at this time. It starts in the frontal lobe and each stage they go into goes farther back in the memory. The most recent memories will be gone and no matter what you try to do, it will only frustrate the person with the disease because they will not be able to recall what you want them to. One thing to remember is that they CANNOT be in reality any longer so you must get into their world to communicate with the person. It's called Validation Therapy. You "validate" where they are in their mind. You get into their world because they can no longer get into yours. This is not their fault and it's not yours either but the more you TRY to get the person to "remember" any recent events, the more they will shut down. They will not be able to believe what you are telling them because there is no recall. Imagine going back 10 years and not knowing anything of the future. This is what it is like for them. With each stage they go back further in their memory. This is why you hear them ask for the little kids or their mom and dad. That will tell you how far back they are. You may even see glimpses of the person they used to be and you may start thinking they are getting better but then they slip back into the past and there is nothing you can do to bring them back to reality again. It's like a spark plug that may kick in for a bit and then not work again.

Well I never answered your question ?? Most of the time..they know already and there is no point....pointing out the elephant in the room ! You just work around the elephant as each day brings a new problem or a Blessing. My cercumstance was just to take one day at a time. Always reinforce love and trust and truth. Take care of yourself the best you can. Whatever brings you stress relieve and joy do it. A happy caregiver is them best caregiver. One day at a time. : )*

Sunflo you gave a great answer. I moved in with my husbands uncle, a man I had never met before. My husband and I lived with Uncle Gerald to three years. I found out early I WAS GOING TO BE THR PRIMARY CAREGIVER. My husband knew his uncle all of his life. So as a ''friend just meeting'', I think uncle Gerald trusted me right away. We had a good relationship. The one thing I did was to make this promise to him. UNCLE GERALD I WILL NEVER LIE TO YOU. He felt comfort knowing he could trust me. As the disease advanced yes I did have to lie on occation to protect him. I found with him to keep peace !!!! I would agree with everything he said....UNLESS IT WAS HARMFUL TO HIM ! I agreed with him when he told me there was a large black woman on the couch today. He figured I gave her permission into be there. I asked did she tell her name? He said yes it was Okra or something like that?? I said why yes that's Ms Opra and she would probly be back the next day. Looking back all the stories are funny. Yet when caring for someone 24 hours a day the stress can be overwhelming. If a friend or family member offers to come band stay with your loved one. LET THEM !! Go to the store the beauty shop or somewhere. Remember to take care of yourself !! You are the best caregiver WHEN YOU CARE FOR YOURSELF ALSO ! There is no easy way tondo this. Each person is different. There were times when Gerald did not believe 'that was his bedroom'. I would remind him often of my promise to never lie to him. He seemed to remember that promise all the time we lived together.
Be gentle on yourself, take all the help from family and friends. Do not feel guilty about anything !!! You are doing the very best you can. I pray this gives you some peace and just knowing others have been there. If there is a support group in your area, join it. Just talking to others in your shoes is a great stress reliever.
God Bless you sweetie try to love and laugh each day. Unless the house is on fire?? Your doing good!!! Blessings sassy. : )*

I choose not to tell my mom. She was recently diagnosed but I felt I have known for a while now. Telling her will accomplish nothing. Before her diagnosis we had already taken care of all legal matters. She lives with me and will until necessary to place her somewhere. I don't want to tell her the one thing, with my luck, she will actually remember.

Sodonewithsal1, you are so right about cancer vs Alzheimers. Even if one catches Alzheimers in the very early stages, there is no cure, no surgery, very little treatment to make it go away.

It used to be that cancer was the most feared diagnosis. Now it's Alzheimer's. No wonder people refuse to accept it, especially when their cognitive decline has already begun by the time the symptoms are recognized.

I'd want to know, but that's just me. The truth is always better than lies, IMO.

I agree with jeannigibbs, this is not a one size fits all answer to the question. My Mother is 90 and only a few months before her health took a drastic turn downward did she agree to have a DPOA done. I finally convinced her to do it because upon making my Will, years ago, my lawyer told me I even needed one, that everyone should. Thank goodness she did. Her doctor did tell her she had alz which made her mad. Later she would ask me why she couldn't remember anything. I sweetly told her that's just what alz does and we just deal with it from day to day. She told me she hoped I never have it because it wasn't good. If mentioned too often she gets very upset and says she's tired of hearing it but I only say something when she ask a question ... not to remind her. It all depends on your Mom. Seems the majority of people who are told are resentful. I constantly reassure her that I just want her to be happy, not to worry and not to be in pain. She's very grateful for that and more so each day. Good luck. God Bless

When the doc told my mom, hmmm, probably seven years ago now, my mom became quite angry, stormed out of the office and never saw that doctor again. She saw another doctor in the same practice and eventually was started on appropriate medications. She had all of her legal affairs put away 15 years ago, for all the good it did her! Trust, POA's, advance directives and such. Then Sib with power decided she was going to take care of her own interests instead of Mom's. Don't think this will ever end.

We all need to take care of these legal issues while we are still able to. And, yes, that includes me!

we are surely all different...I would want to know...but my husband who has it...when told..will not seek a doctor care and denies it...even though he has made a will...he lives in total denial...I know what is coming..and I sure hope it takes its time..I am trying every thing from Vitamin E and coconut oil and coconut water in my cooking..trying to keep his diabetes under control , his diverticulitis in control...ECT.. since when we are home all he does is eat eat eat...and he is still about to walk I take him on long drives and to thrift stores where he can buy and take his time they understand and are able to deal with slow folks in line..where in the grocery they are NOT able to do that without THE FACE....I do not bring it up any more...but he is well aware something things are changing..and even ask me to help with the checkbook...

There is not a one-size-fits-all answer to this question. Jlakhani, you have tried telling Mom and she doesn't want to hear it. I'd respect that. My mother is aware that she has "some memory problems" but it would serve no purpose for us (or her geriatrician) to talk about dementia.

For my husband, on the other hand, it was important for him to know his specific diagnosis, to understand that he was getting the best treatment available for it, and that strange things he did were not his fault ... that "Lewy" caused them. (He had Lewy Body Dementia). He even decided to donate his brain for research, to help future generations.

Some people should be told. Some people should not.

Elderly people should make decisions about their future, even if they don't have dementia. You do not have to convince her of a diagnosis to encourage that.

Good question as ive never had the heart to tell mum? its like never mention it? but i think youre right i should say something to her as cap says when the time is right? when alz or dementia is mentioned on tv or wherever she says oh i hope i never get that????????? i know my friends mum was told several times but she just refused to believe it? i know my mum will deny it! such a hard thing to tell someone but will she listen i doubt it?

Our technique with mom with dementia is not to tell her anything too far in advance; it just upsets her.

Thank you for the great responses. My mom is 73 years old and fortunately thus far she has no other physical ailment.

Currently she has come to stay with me for some time. I tried talking to her that someday she may have to go to the care center but she vehemently laments this thought.

Yes, I would tell the patient no matter how hard it was on them and me (to see them breakdown). Everyone deserves do know whats going on with them, and as mentioned, depending on the stage, it seems as if Wills,Living Wills, Caregiving wishes can still be written by the person with Alzheimer's, your mom. Would you want to know? What about any activities your mom hasnt done in her life that is safe to still do now, it would be great for her. Of course she wont remember it later but that moment of joy she will feel is priceless! As will you remember that moment too.

Its a hard decision, and I wish you and your mom the best. Hugs

I agree with Realtime above.... I think I would want to know so I can understand what would be happening next since I have learned so much about memory loss from this great website. Of course, I know as such illness advances, I might not feel the same as I do now.

I have told my significant other I do NOT want to die at home.... knowing him, if I did die at home, that room will forever be known as the "room that Suzie Q died in", and I don't want that. He would repeat that to everyone, even the Realtor and future buyers, some of which will buy elsewhere. His whole family is like that.

I dearly hope that if I develop Alzheimer's, someone will tell me while I'm still able to make decisions.

ive had no problem explaining memory illness to a patient but it needs to be at a time when they are themselves lamenting about their horrible short term memory . it is at this time that they are legitimately asking for a reason for their forgetfullness .. i just tell them their brain is old and compromised like all of their organs at that age .. they are very receptive to such an explanation at this time ..

My experience was mom had total denial when we would talk about it. She would tell me "doctor never said that". Even when we returned to dr and he held her hand and said it to her, she denied it. It was very sad and heartbreaking to watch and this was a physician she trusts. She refused to take the meds prescribed because she knew they were for memory loss.

I would try to rush around, talk to her by bringing it up, to nail down plans, etc. but for my mom and hindsight it was wrong approach. I lost time, frustrated and scared her and frustrated and panicked myself.

This was over a year ago and she is for the most part doing better then expected. I would say, you can bring it up once, but don't dwell on it other than to frequently tell them you love them, reassure them you will be there to help and that you want to help them anyway you can. Let it rest. At your soonest opportunity DO make sure DPOA, AMD, estate plan is in place. If you can, understand the finances of your loved one, insurance, etc. that is important. Research the disease, research some care facilities in their area or your area and visit a few. Pair down and then visit one or two with your loved one.

Lastly, and most important, have a good discussion with your loved one and understand what they want in their future. Don't be surprised if you have to revisit that conversation often. My mom wants to die in her house and never go to "one of those places". I can't promise that but I no longer tell her "well you're going there, I can't take care of you". It makes her mad and she denies that to. So what I do say is "mom, I promise to do everything we can to keep you in your home as long as we are able ok?" I tell her, we'll find some care to come in when the time comes to help you manage--is that ok?". It calms her and reassures her. I dread when that time comes, because she's refused all help I've arranged to make her life easier (granted it was to make me feel better). Likely, she will have to be placed in memory care in the future.

For now she is managing, it's not perfect, but I know everyday she tries really hard to stay healthy and mentally sharp as possible. I ALSO know, that she knows, that she has some dementia and memory impairment. --without my reminding her or scaring her every time she forgets something, repeats something or is confused.

Be patient, do your homework, help your LO prepare and understand this is a rocky road that you can journey together. Help your LO and other family members understand all the options for the future and prepare so that there isn't panic or disagreement in the future.

Good luck.

This is such a great question. It seems you told your mom and she would not accept it. As the AD progresses, then how much more likely is she to accept it later. Maybe she isn't capable?

If a person has already made their POA, Health POA and Last Will and Testament, and are in a place where they are receiving care and medication, then why do they need to know more than they have some health problems that include poor memory? Perhaps those who have experience with it can answer this.

If there memory is so poor that they cannot recall what they did or say minutes ago, then how is telling them this information helpful?

How old is your mom? Does she have other health conditions? My parents put together POA and other documents when they were in their late 60s as a precaution against untoward events. I am about to turn 61 and see the wisdom in doing this. Can you appoach mom with a general age-related concern that "she's not getting any younger" and that documents need to be executed? A lot depends upon the level of trust your mother has in her children. My MIL resisted POA until the very end, and then it was too late for anyone to help her.