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Should you lie to some one with dementia? What do you say or do if a man with Dementia has lost his wife died and he is asking for her? Should you lie to some one with Dementia ?
At Banner Hospital in Scottsdale, Arizona, the answer to this question that we received when we asked it was this: Logic and a basic moral compass point to black and white or...lie and truth. We were told that reality changes with these illnesses and morality is not an issue any longer. Comfort moment-to-moment is. Call it lying as it is from that moral compass. Call it a conscious learned skill set in order to provide comfort and enhanced quality of life to one with these illnesses. When a husband has been followed for three days by his wife with Alzheimer's from room to room, and even when in the bathroom he is summoned by her pounding on the bathroom door....is it immoral to support HIS well-being as well as hers by responding to her question, "Where is my husband" when he has locked himself in his study, by the care giver telling her, "He's gone to the post office." Her response was, "Oh, good!" And until she began the wandering (within minutes) calling out his name and asking where he was again and again for as long as he needed the space and time to work, regroup and reach out to others on the phone, she had some comfort. To fully understand with years of experience, and education what these illnesses are is to assure anyone who goes to a moral compass on this question that this is so much bigger and so much more in need of comfort and guidance for you as this CAN BE so painful and frustrating to us all. It is about comfort and a sustainable quality of life for all involved. I held trainings for friends and family in six client situations to role play and have open forums and brought in professionals in healthcare to educate and inspire. It's what is needed....am suggesting.xoxo
Lying to people to save them pain is a justification that has been relied on heavily by philanderers and politicians through the ages, backed up by such sayings as "what they'll never know can't hurt them," "he wouldn't understand," or "I didn't tell you because I knew you'd react like this."
That's not to say lying is never necessary, clearly sometimes it is, but it is not something anyone should do on principle. Avoid it when you can.
Very good advice from the forum. My dad keeps asking for his mother, passed on some 50 years ago and my brother who passed away 7yrs ago. We are usually shocked and do not know how to respond. We too now will say, "you will see them soon", its a great pacifier. More gentle and comforting. I've read the gentler you are, the better they respond.
I have to say, I go back and forth on this. My grandma has severe dementia. My mom passed away a month ago and she was the primary care giver of her for a while so she's constantly asking about Carol, where she is, how she's doing, why she isn't helping her anymore, etc. She doesnt' remember that's her child so to her she always looks at me and says, "Sorry you lost your mom". With her I tell her the truth and say she was sick and passed away. Sometimes she replies that she remembers now but just can't get her mind wrapped around it or sometimes to her its the first time she has heard it and is legitly sad. I don't think it's traumatizing though and honestly it hurts me more than her to talk about it as the wound is still very raw. I'd rather have her know the truth and not have a conversation about it than lie and have her ask more questions.
Now when she asks about her parents, and sisters I vary the answer. Usually I just explain she's 86 years old and she moved away from her family. With her parents I usually say I never met them and have been caring for her. As long as I dont' explain they are dead, she seems fine with the answer and can't really focus long enough to understand what that means. With her sisters, (both are deceased) I give the answer, "You're in CT and they are in PA and Maryland so we can't see them as much as we would like." I figure both are buried in those states so it's a good honest answer. To explain to her that her sisters were dead was just too upsetting. She even cried when I gave her the simple answer that her parents were dead. She had forgotten they had died decades ago (more than almost 40 years to be exact). So she was crying as though the wound was fresh. That upset me way too much to ever repeat. So use your judgement call and see what works and don't make him cry everyday reliving the horrors if that is how he responds. Luckily some experimentation can occur to make the best judgement as they often don't remember day to day experiences very well.
I'm going to have to respectfully disagree CM. What you say makes sense if someone is in the early stages of dementia, of course they need someone they can trust to keep them grounded and tell them what they have forgotten, but if the man in question was still somewhat cognizant then I don't think the poster would have needed to ask. Once they reach the point where their reality is forever altered I can see no point in reminding them they are losing their mind, especially if it is causing distress. If they ask "did Mary die" of course you answer truthfully, but if they are not aware enough to ask then fibbing seems the kinder approach.
The short answer to your question in the main body of your post - should you lie to someone with dementia? - is no. You shouldn't. People with dementia have the same right to be told the truth as anyone else.
So that's what you're aiming for: to respect this man's right to know that his wife has passed away. How you go about it without being brutal, though, is a much, much longer answer, and still in development among dementia care researchers and practitioners. There are techniques and props you could use that will support his remaining memory, and depending on how functional it still is he may eventually come to retain the information. It is also legitimate to distract him from the question, for example by using it as a cue to talk about his marriage and his family more generally. If in the course of that he forgets that he was looking for her, well and good; if not, you can follow the history through and prompt him to remember that his wife has passed. Did he go to her funeral? Was there an order of service that he could keep and read? The key thing is to help him get to the information himself.
You need to use a good dollop of common sense about it - if he becomes extremely agitated and distressed, then for heaven's sake change the subject and leave the memory box for another time. Granted, this is all much more time consuming and sad than lying. And of course it is - seeing an old man grieving is very sad, and answering repetitive questions is very tedious. But he has a right to be able to trust people around him, and he has a right to mourn his wife. That's the point of telling him the truth.
my dad would call me by mom's name, both to my face and about me to grandson; he had a hard time with it and would try to explain till he saw how it wasn't working and then saw how I just let it go - didn't try to correct him
Consider telling him he will see her soon and that she loves him dearly. Give him sweet cards from "her" that you mail to him. Enclose photos of the two of them in the cards. Make him a bulletin board where he can keep "her" cards. He will eventually associate "her" with the tangibles.
My 90 + year old father-in-law did not recognize or ask about his wife, who was still living in another state. But he often asked about his parents and after seeing how the truth about their deaths devastated him, we never did it again. We simply told him they were away.
It comes down to knowing the individual patient and deciding what is least harmful or painful for them at that moment in time. The truth may relieve caregiver guilt, but at what cost to the patient?
I agree. There is no point in being hurtful by saying she is deceased. Just say she's gone to the store, gone to visit a friend -he will soon forget what he asked.
I agree that telling them the truth can cause them a lot of pain and they won't remember and will ask again and again. My mom used to ask where parents were and when was her brother coming to visit. They had all died long ago....and so I told her they would be coming soon to visit her soon. She also asked if they would come and take her home and I said 'Yes, when they come, they will take you home with them'. After awhile she no longer asked and became totally non-verbal but she would often look into a corner of the room and smile at something I couldn't see....I think it was them coming to take her home. Blessings to all of you.
They are asking and asking and asking because their brains are deteriorating. It sounds heartrending and sad, you automatically might think 'oh, the poor man is suffering so without his wife'. But that's the disease talking. Just say 'she's out right now' or 'you'll see her soon' and DEFLECT the conversation. My mother was dead convinced her m-i-l was sleeping in the house and was worried about where she was going, how she was getting around, etc. I'd just say, 'I saw her on my way in, she went out your back door and got into a waiting car . Would you like to look at this new magazine now?'
I agree with the "it depends" answer. If he does not remember that she has passed, it would be cruel to remind him every time. I also agree with whomever said that "getting ready for the new place" might not be such a good idea. The simpler the better, IMO, "she's out right now" or "you'll see her soon" would likely be best.
My mother began by asking how her mother was and at first I told her she had passed away. She seems to understand and except it, then she started talking about her father and sibling and I told her they had passed. I could see that it upset her, but she still understood. Over Christmas she asked started talking about her husband and where he was and after about the 20th time of her asking I finally folder her "Dad had passed away 20 years ago". She completely broke down and cried for 45 minutes. I was eventually able to get her calmed down by moving her to a different room and changed the subject to something else. I will never tell her again that someone has passed away. It completely broke my heart when she was crying and could not seem to understand that it had been 20 years. I was like it had just happened. We now tell her that Dad is away and her parents and sibling are away. She seems satisfied with this answer.
@ cwillie..I liked your suggestion "getting the new place ready for you" because for me it symbolized our home in Heaven so it helped ease any guilt for lying.
This is obviously a case-by-case situation and I think people need to be careful about using their own situation and circumstance as the "rule". Most good people struggle with lying but you need to weigh out the benefit of being the unwavering truth teller. If you know this will cause stress, grief, pain to only be repeated later than whats the point of not embellishing. Traveling down a circular road doesn't get you to the same place as a straight one and you need to adjust your purpose and expectations. If knowing the truth offers no benefit than the decision to share it has nothing to do with them. I would expect those who feel different to share all their personal "truths" to friends & family as well or prepare to fall from the perch.
I agree that my suggestion "getting the new place ready for you" may inspire someone to pack their bags, guess I'm not very good at half truths ;). Personally I would flat out "lie", it would be much easier to come up with evasive excuses and redirect.
I think Linnea is dealing with a parent who is still has much more cognitive ability than the others mentioned in this thread. And, I think, her mother is over all more aware of her own deficits than the others. I think this choice works for her Mom. Unfortunately this is part of what makes this so difficult. It's a judgement call. In my experience, this is the more rare situation. Telling the truth in similar situations just did not work with either of my folks in their later days. It caused so much distress and disruption. The carefully worded lie and redirection were less painful for all of us . Part of their issue was the fact that neither of them ever recognized that they had any memory problem. They adamantly refused to believe they could possbly be mistaken, about anything. And became enraged at any attempt to tell them otherwise. When Dad told Mom that her father was long dead, it was not just painful for her, but also intiated a major violent episode. Unfortunately he was in the early stages of Alzheimers, while she was in the later. She was well into the stage where redirection and a gentle lie would be the better choice. But he had already lost the ability to see anything from any point of view other than his own. He insisted he was right, telling a lie to save her pain just did not compute for him. ?...Good luck to all dealing with this.
It depends on the type of dementia, and how far it has progressed. I also believe that the reaction from the person is more important then anything.If they become upset and sad and cry if you tell them someone has died, then don't tell them. Most times, they wouldn't know the truth, if the truth be told. If they don't know if someone is dead or alive, what harm would it do to make something up to make their world easier to live in. I don't see the harm. My mother did not ask me if her parents were alive, she asked me how they were. Sometimes you need to enter their reality.
In most cases I'd just say, "you'll see her soon." You're not really lying, you are comforting him. Try to distract him after you tell him that if you can. He just doesn't need to go through the pain - again - of being told of her death.
Of course you lie if the situation is dangerous. But, tell him the truth, then show him photos of his wife over and over. He will forget, but just remind him. At some point in time, he will forget he had a wife and will stop asking about her.
I agree that a tactful lie is needed, but if I were the caregiver, I would be reluctant to say, "She's getting the new place ready for you," because I would be afraid he might start packing a suitcase or giving away things he didn't want to take to the new place, or be frightened by the idea of going to a new place. My late husband had dementia, and often operated on several different levels in one day. Example: My birthday is in April; his was in May. When I mentioned our birthdays, he said, "Yes, we have two birthdays and a wedding anniversary coming up soon. He was right about the birthdays, but our anniversary was in January. His first wife, whom he divorced, was the one with whom he shared a June anniversary.
It seems to me a lot depends on the individual with dementia. My dad sometimes asks about his father and a few other people who have passed. I tell the truth but couch it in terms of passing rather than dying. He then says, my memory's not so good anymore and we move on. I never make a big deal about any of this but treat it as normal. It works for us but it may not work for everyone.
I don't agree.my mom asks about my father, or more often her parents frequently and is more confused when the staff makes up stories. When I tell her they are "gone" now and have been for a long time, she thanks me for telling her the truth. She relies on me to tell her the truth even if no one else will.
I agree, it is just too cruel to keep telling them over and over ( and they will ask you a million times) that their beloved spouse is dead. My mother would always ask about her parents, and they had been gone for 50 years. So I would make up stories about how they were and I would tell her her mother was in a home just like the one she was in. And she loved it there. She was ok with that. Strange part is, my father had passed away only a year earlier, and she never asked about him. And when she asked about Dad, she meant her father. I just never wanted to upset her, it wasn't necessary.
I believe decisions which come from the heart can help us see more clearly what our mind can complicate. I fail to see anything wrong with embellishing the truth here and particularly like the "she's getting the new place ready for you both" suggestion by cwillie. One can only imagine the physical toll of going through that loss every time. Perhaps this is really no different than sharing stories of Santa Claus to bring joy to a child instead of telling the "truth". Bless you for caring.
cwillie is right. It's not really a lie. When someone has Alzheimer's sometimes we have to make up new rules to accommodate the disease and as cwillie mentioned, by telling him over and over that his wife has died would be cruel and breaking his heart each time you tell him.
When he asks where his wife is pacify him by telling him she's at work or visiting friends....whatever is appropriate. Of course if she never worked then telling him his wife is at work isn't a good idea but you get the idea.
People with Alzheimer's can't be expected to live in our reality. They're not capable of that anymore. We have to go into their reality and be with them there. It's heartbreaking and exhausting and mentally draining.
I'm assuming he should already know his wife is gone but just can't remember? There would be no point in breaking his heart over and over by reminding him. Don't think of it as a lie, it's known as therapeutic fibbing. If you find it difficult you can find ways to tell the truth in a round about way... "she can't come today because she is away", "she's visiting her parents", "she's getting the new place ready for you both", whatever he will accept and makes sense. If it helps, sometimes they will be looking for a spouse or child and that person is still right in front of them, but the face they remember is from years ago, you need to learn to enter their world to keep the happy.
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Call it lying as it is from that moral compass. Call it a conscious learned skill set in order to provide comfort and enhanced quality of life to one with these illnesses.
When a husband has been followed for three days by his wife with Alzheimer's from room to room, and even when in the bathroom he is summoned by her pounding on the bathroom door....is it immoral to support HIS well-being as well as hers by responding to her question, "Where is my husband" when he has locked himself in his study, by the care giver telling her, "He's gone to the post office." Her response was, "Oh, good!" And until she began the wandering (within minutes) calling out his name and asking where he was again and again for as long as he needed the space and time to work, regroup and reach out to others on the phone, she had some comfort. To fully understand with years of experience, and education what these illnesses are is to assure anyone who goes to a moral compass on this question that this is so much bigger and so much more in need of comfort and guidance for you as this CAN BE so painful and frustrating to us all.
It is about comfort and a sustainable quality of life for all involved. I held trainings for friends and family in six client situations to role play and have open forums and brought in professionals in healthcare to educate and inspire. It's what is needed....am suggesting.xoxo
That's not to say lying is never necessary, clearly sometimes it is, but it is not something anyone should do on principle. Avoid it when you can.
Now when she asks about her parents, and sisters I vary the answer. Usually I just explain she's 86 years old and she moved away from her family. With her parents I usually say I never met them and have been caring for her. As long as I dont' explain they are dead, she seems fine with the answer and can't really focus long enough to understand what that means. With her sisters, (both are deceased) I give the answer, "You're in CT and they are in PA and Maryland so we can't see them as much as we would like." I figure both are buried in those states so it's a good honest answer. To explain to her that her sisters were dead was just too upsetting. She even cried when I gave her the simple answer that her parents were dead. She had forgotten they had died decades ago (more than almost 40 years to be exact). So she was crying as though the wound was fresh. That upset me way too much to ever repeat. So use your judgement call and see what works and don't make him cry everyday reliving the horrors if that is how he responds. Luckily some experimentation can occur to make the best judgement as they often don't remember day to day experiences very well.
So that's what you're aiming for: to respect this man's right to know that his wife has passed away. How you go about it without being brutal, though, is a much, much longer answer, and still in development among dementia care researchers and practitioners. There are techniques and props you could use that will support his remaining memory, and depending on how functional it still is he may eventually come to retain the information. It is also legitimate to distract him from the question, for example by using it as a cue to talk about his marriage and his family more generally. If in the course of that he forgets that he was looking for her, well and good; if not, you can follow the history through and prompt him to remember that his wife has passed. Did he go to her funeral? Was there an order of service that he could keep and read? The key thing is to help him get to the information himself.
You need to use a good dollop of common sense about it - if he becomes extremely agitated and distressed, then for heaven's sake change the subject and leave the memory box for another time. Granted, this is all much more time consuming and sad than lying. And of course it is - seeing an old man grieving is very sad, and answering repetitive questions is very tedious. But he has a right to be able to trust people around him, and he has a right to mourn his wife. That's the point of telling him the truth.
It comes down to knowing the individual patient and deciding what is least harmful or painful for them at that moment in time. The truth may relieve caregiver guilt, but at what cost to the patient?
Personally I would flat out "lie", it would be much easier to come up with evasive excuses and redirect.
Take care,
Carol
Bless you for caring.
When he asks where his wife is pacify him by telling him she's at work or visiting friends....whatever is appropriate. Of course if she never worked then telling him his wife is at work isn't a good idea but you get the idea.
People with Alzheimer's can't be expected to live in our reality. They're not capable of that anymore. We have to go into their reality and be with them there. It's heartbreaking and exhausting and mentally draining.
If you find it difficult you can find ways to tell the truth in a round about way... "she can't come today because she is away", "she's visiting her parents", "she's getting the new place ready for you both", whatever he will accept and makes sense. If it helps, sometimes they will be looking for a spouse or child and that person is still right in front of them, but the face they remember is from years ago, you need to learn to enter their world to keep the happy.