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My father had been diagnosed with Alzheimer's 5 years ago. He is still very functional but does not cook and needs cuing to shower. There are six children so someone is with him always. My Dad is very lucid all day but is a sundowner and becomes completely forgetful of the days events and the person who were with him earlier. Before he goes to bed he asks where my Mother is. On one recent occasion I told him she was in heaven. It was like he heard it for the first time even though he has dealt with it well during the day. He was so sad, cried for hours and even made statements that he was thinking of killing himself. It was painful to see him grieve so inconsolably. Two days later he asked again where Mom was. This time I told him that she was in the hospital being treated for pneumonia. He was obviously very concerned and asked why he had not been in to see her . I told him he did see her and would be going in again. He was fine with this answer and told me to say a prayer for her, went bed and slept soundly through the night. It is my feeling that I while he is sundowning he can not thoroughly process and I am only causing him more harm and pain. During the day when he is clear and lucid I will always tell him the truth about my mothers death . Please give me some feedback as I have siblings who feel we should be truthful and help imprint my mothers passing at all times.

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I'm a firm and absolute believer that the caregiver's instincts on how to handle situations specifically like this is exactly what they ought to do. Yeah, it's easy for siblings who aren't doing the caretaking to second guess. They aren't listening to him cry for hours and losing sleep because they think it's right to be truthful at all times.

Go with your gut. Do what's easiest for you. Ignore siblings' well-meaning advice on this subject. If it continues to be a problem, don't discuss that issue with them.
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It sounds like you've handled this situation well. When your dad is sundowning and he asks about your mom telling him that she's in the hospital (but is ok) is acceptable and it works. Having him hear the news for what he thinks is the first time is too difficult for him and is asking him for more than what he is able to give: full understanding of the situation.

I don't agree with your siblings. I don't think it's fair or right to try to "imprint" your mom's death upon your dad over and over until he gets it. It's cruel. And dementia doesn't work that way. When he hears that she has passed away he grieves and is upset and inconsolable as anyone would be. Why would your siblings want to put him through that everyday? That he doesn't know where your mom is everyday is evidence that he is unable retain information, that you have to explain to him everyday where she is demonstrates that information he is given doesn't stick. And forcing her death down his throat day after day is wrong.

If you are his main caregiver then what you say goes. You might have to put your foot down on this one to protect your dad from well meaning but clueless siblings.

I wonder why it's so crucial to your siblings that your dad know and understand the truth? First of all, it's not possible. Not with dementia. So why would they be so insistent on telling him that his wife is dead day after day after day until he "gets it"? This information will hurt him everyday and he will go through the pain of her loss everyday. What is wrong with your siblings?
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You handled the situation just fine. Your Dad is not able to process the truth so why cause him unnecessary pain and grief. I am sorry for the loss of your Mom. It's a tough journey.
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I am for the truth, but you did that. So, I think what you are doing is fine.
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It's OK to tell him. It's OK to display a picture of them on their wedding day, vacations, family celebrations. It's OK to remember and celebrate the brighter moments. Redirect him to a happier event in their lives. Fortunately dementia is easy to redirect to another, happier subject.
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Obviously, the loss of a dog is not on the same scale as the loss of a parent. However, I have experienced something similar with my mother. She is in the early stages of Alzheimer's and asked about the passing of our family dog. She was a Shetland Sheepdog who lived to be about 14 years old. At the time she died, my mother was in a weakened physical condition and had fallen out of bed, landing on top of the dog, unable to roll off of her or get up. When I came to see my mother, I found both of them on the floor. I first got my Mom back into bed and then was very distraught to find that our dog was dead. When my mother asked about the dog, I came to the conclusion that it was unnecessarily cruel to make my Mom relive that horrible experience. She felt absolutely awful when it happened and I wasn't going to put her through that again.
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My Dad is 92 and in a dementia facility. Just to help make this clear....he has days when he says he needs to call his mother and check on her, or he needs to call his brother but can't find the number, and asks us to help him. If we say to him right up front, " Dad, your mother is dead. She's been dead for a long time." or "Dad, Lloyd died a long time ago..." he gets tearful and comments on how did he miss that happening? So when he says that now, I find a way to say Oh we don't have the number, and then ask him how old he is now? When we get him to figure out that he is 92 years old, invariably then, he can come to his own conclusion....."OH! Well I imagine Mother isn't alive anymore if I am 92...." and then we say, "Gee Dad, you always say your memory is bad, but yes, Grandma died in 1988 and you went to her service. Should we bring in the pictures for you?" And get on the memories of his mother. No real grieving then....if he can figure out first just how old he is. But sometimes, when asked how old he is....he'll give an answer, like...." Oh, in my 30s". IF he does that, I usually try to show him pictures of him and Mom together or use the mirror....so he can physically see that he is way older. But he does NOT like the discussion to involve the words: " You are wrong...." THAT upsets him a lot...on every occasion it gets said.
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When I read the first line of the question, my inclination was to opt for truth. But after reading the information you've provided, I agree with others, YOU HAVE DONE THE RIGHT THING, If his brain is functionally unable to process the information, let alone the emotions, there is no point in insisting on the truth. The truth can be vague, the hospital has placed her in a safe place to feel better. He will see her again sometime. And I know my father enjoys the photos I have around him of mom and him in earlier days.
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I agree with the lady above... I think somewhere along the way people have heard that the truth has to be told... but d'you know what, as long as it is not confusing him during the day when he remembers she has passed (ie: 'but you told me she was in hospital last night?'), then there is no benefit to forcing him to go through that moment of grief every time in his suundown moment.

I am pretty sure I saw on an Alzheimer's/Dementia site that you are not meant to correct them. I think it is on here...

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=84

Find advice from experts and show this to siblings. I think there is an element of guesswork going on here as to what is best for dad.
Pretty sure the official websites for his condition will have advice.
Ideally you need to be on the same page, but if it's you that puts him to bed each night then you do what you are doing and don't tell them.

Sounds like your dad and mum did a great job raising you all, you all being their for him now is lovely to see (and rare on this website!)

God bless you all xxx
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Agree with everything above. In general lieing is never "right' when someone is lucid and usually already knows the answer and is just seeking confirmation.
in the case of dementia when someone has been told something upseting once it is never good to continue to cause further pain when a little redirection will not be upsetting. so yes you are absolutely doing the right thing for your dad and you don't need to discuss it further with your siblings. When you are in charge do it your way.
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Tell him the truth, show him the grave (if there is one) and he is doing what everyone else does when they lose someone they loved. Over the weekend, we lost our cocker spaniel to CHF, the other two dogs saw us bury her in the backyard and now rest upon her grave briefly when outside. Animals will grieve too, so your father is only doing what is natural regardless of his dementia. Tell him over and over again and let him cry. It releases toxins...
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I can't give you definitive answers, but I can tell you what I do with my mom.

When she asks about family who are long passed, I try to see past the obvious question and figure out what she really needs at the moment: reassurance she is loved, remembered, and safe (usually).

When she asks about her mother, I say that I haven't talked to grandma in a while, but I know grandma loves you very much.

When she asks about my dad/her husband who passed in 86, I say that dad loves you and wants you to rest and do what the doctor says.

If she wants to know when one of them will come visit, I just say that I don't know, or sometime later. I don't give specifics, and I don't talk about how that person has been dead for decades. Why upset her, and possibly cause a lot more disruption and distress that can ruin her entire day? The truth is absolutely immaterial and mom won't be able to relearn what has happened to all these people. I feel like it's cruel to reality-orient her over & over & over.

So far, it works. She doesn't seem to really need a factual update on the status of that family member/loved one, but to get a response that makes her feel good, reassured, and safe.

I hope this helps you.
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It would be cruel to put your father through the pain every night, especially when he's not going to remember, and you'll have to do it again. As long as he accepts what you tell him, and is okay with it, keep on doing what you have been doing. After you answer him, try changing the subject quickly so he won't dwell on the fact his wife is in the hospital, etc., which could also upset him.
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I do the same thing with my mother. My stepdad died in February and even though she was told at the time, I see no need to tell her over and over again that he is gone. When she asks where her husbmand is, we tell her that he is in the hospital and she's OK with that and moves on to another subject.
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Caregiving comes with no shortage of opportunities to beat yourself up. It's never ending judgement calls based on your motivations and intent around the patient's wellbeing.

When faced with the question "how much do we tell/not tell", ask yourself what will have a better outcome FOR THE LOVED ONE - not yourself - by disclosing details about whatever situation it is.

E.g. do we remind mom that dad died from a long battle with cancer every day, or do we tell dad that his house was sold years ago to pay off his medical debts, or the dog had to be put down, etc.

Some things to think about - for what it's worth!

==What good comes out of repeatedly upsetting somebody whose brain physically can never learn, retain, or use this information? What do you expect them to do with the facts now or later? If the intent is to keep them from asking these questions again, that's not going to happen.

==Will this person ever recover to the point where they need all these details (the truth) to function, be safe, and make good decisions? Will they actually need or be able to go live in that house that was sold?

==What harm comes to the loved one if they believe details that are different from the actual truth?

==What physical effects of being upset are you causing? E.g. high blood pressure, chest pain, high blood sugar, etc.

==Do you need for that person to be as upset as you are at having to go over this distressing info again?

==Is persistent reality-orientation a way to punish this loved one for aging, becoming a dependent, and not staying in the competent, capable role they always had?

==Is the need to reality-orient just being lazy or indifferent to the patient's emotional & physical state?
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What I've taken away from the treatment and subsequent deaths of loved ones (mother-dementia, husband-cancer) in the last couple of years is...there is no 'one size fits all...no one response fits all circumstances' when it comes to medical matters. One has to evaluate each person, each circumstance, each incident, prognosis, and make a decision as to a response.
Those who think you always tell the truth...period....(without evaluation), you always do this or that...must lack experience in caregiving & making decisions...they are "Monday morning quarterbacking" from the sidelines. My experience has shown me there are no absolutes for every person, every circumstance. There IS grey area. With that said...I agree with so many others here Boflans1...follow your gut. I think you've done the right thing.
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You handled the situation the best way for him to cope with it. It would break my heart to see "my"father cry. And I would do everything to keep him happy, and talk about the best times in his life.
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You did the right thing. Sometimes you kinda have to roll with the punches. This time your gut told you how best to handle someone with his illness. Your peace of mind counts too. It is so difficult to know how best to handle these kinds of situations but you seem to have found the best answer for your father. Bless you and peace.
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When my grandmother with Alzheimer's would ask about my dad (her son-in-law) who'd already passed, my Mom would just tell her that he's fine. I think it's ok to say things like this so as to not distress our loved ones any more than necessary. Best wishes to you and your family.
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You did the right thing. And you caught on real quick when to tell a 'loving lie' so that he doesn't grieve with his heart hurting every night. Your siblings are not familiar with dementia. Therefore, they're advice is based on a normal person's situation. People with dementia is a totally different scenario. I forgot the names but there are some good movies that came out regarding dementia. Maybe your siblings can watch these movies so that they have an understanding of what's going on with their father.

Last year, my dad's sister, brother and wife (mom) died in January, March and June. Like your dad, my dad remembers that they have died. But at nights or the early mornings, he thinks they're alive. I still struggle with the 'lying' part because I've always been a lousy liar. So, at nights, while I'm trying to lie, he would remember that they're dead or he gets distracted and I don't need to 'lie.'
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This is simple since you and your siblings feel differently. Just tell your father, "All is good but be sure to ask ( which ever sibling said he should know) because they know details, so they can deal with the negativity. I agree with you because my mother has parkinsons and dementia and i know any negativity makes for a horrible day for all. Distraction is key change any subject and make light of things for you and him. I tend to put myself in the situation and thats what i would want since every day is a struggle. This is a family disease and all are entitled to own opinions. So let them have negativity on their visits. Im sure you would rather laugh with your dad. God bless to all
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It's Okay to try what is most comfortable and acceptable at the time. Sometimes trial and error comes forth to establish best way to present matters. My mom was in rest home due to absolute needs. Later her mind did wonder. back to pleasant memories. ( coming to life for her even though not reality) She would ask if I got to see my uncle that day, who had passed years ago and was buried in the local cemetery. First I tried to answer truthfully, ( saying mom, he is buried near bye in the cemetery and has been there for many years),but it did not take long to figure out that the good memories coming to life was more pleasurable than reality. So what makes them feel best about life that one must deal with each day, when it comes to serious matters, must be considered. I tried the absolute truthful route a number of times, at some moments it was acceptable, but then forgotten, regressing back into pleasant memories coming to life once more. Some times one can form an answer that is truthful to the point needed , yet not hurtful news to those in health conditions that warrant consideration of how individuals will accept the information presented. Might we call it cushioning?
Maybe an answer similar to this " mom's health situation developed to needing much rest, so she is resting now." Should the desire to go see her while she is resting, might be handled like, "it is best to not disturb her while she is resting now." If ask where she is resting, you might get away with giving the name of the town where resting; even calling it a special facility for those who need a special type resting care, where they can rest and not be disturbed. Observation while trying varied approaches to keep the elderly one most comfortable might be considered. Who needs to cause them to grieve (continuously ) over lose of their loved one , if it is not necessary? When actually there is nothing one can do about it, but continue on with their individual lives. A hug to the family. joylee
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My Granddad has been dead for over 20 years and my Dad went to the funeral (flew to England!). But in the last year, he pulled me aside in tears to tell me that his Dad was dead and no one had told him about it. (My Dad never cries.) We sat together to "remember" the preparations he had to go through for the funeral. In other words, there is no time limit when you're dealing with dementia. Even though I could "talk him back", the grief was still strong and powerful 20 years later. Prayers to you for the challenge you face here.
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As my sister reminded my mother regarding our grandmother's Alzheimer's, "Just remember that each day she has new experiences new things, and meets all new people". To remind him that she has passed away only brings him sorrow and deep grief, which as a caregiver, I KNOW is emotionally taxing. There may come a point where he does not recognize you, and it may be hit and miss.Just be that "new person" he believes he has met.

I believe the way you handled it was perfect. Why go through reminding him one day after another? It just brings on that initial, soul-racking grief. That is obviously not good for either of you!

God bless all caregivers!
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It looks like many people don't understand the mental state of dementia. The mind is incapable of working properly. So telling the truth is not required for a brain that can't process the truth. It seems cruel.

Yesterday Mum told me when she gets home she is going to sit in her electric rocking chair. Without thinking I said Mum you are not going home. When I realized what I said, I was glad she did not hear me. So hard to keep walking the loving and correct road, so hard. Then she is sitting on the toilet crying because her shampoo and conditioner was stolen. (in her mind) even me telling her I would buy her more did not console her. I am now grateful Mum has short term memory loss, a blessing for her but a problem for me. I am so glad I can come here every day and read about all my new friends being in the same boat as me. It helps so much Bev.
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