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My dad has Alzheimers and we put him in a nursing home one week after my mom’s death. We felt like it was not safe for him to be alone and my sister and I both have full time jobs and were unable to care for him. I’ve been told you have to get in their world and agree with whatever they are thinking that day. Sometimes when I go visit him in the nursing home he is at the nurses station waiting on my mom to come pick him up, and he asks me the whole time I am there if I know where my mom is and why she is so late. He seems genuinely worried about her safety so obviously he doesn’t even realize my mom has passed away. Other times he is aware my mom has passed away and he begs me to take him home. He thinks he is in a hospital and he says he is wasting money being there because he isn’t sick and they aren’t treating him for anything and he has lots of things to do at home and he asks me to check him out and take him home. Usually, I just tell him that I don’t think he is quite ready to go home and then he says well when I get ready will you come get me and take me home. I’ve been told you have to get in their world and agree with whatever they are thinking that day, but I feel like I am lying to my dad and maybe causing more confusion for him by not telling him the truth each time I visit him. Sometimes I think it would be better to just tell him the truth each time I visit, that mom has passed away and my sister and I felt like it wouldn’t be safe for him to stay alone since his memory is bad and until his memory improves he will just have to stay in the nursing home. Although I have told him the truth a few times and he gets very angry and verbally abusive, cusing and telling me I don’t know what I’m talking about, so then I think maybe I should just tell him what he wants to hear. I’ve never been around someone who has Alzheimers and I am so confused if I should always be truthful even if they get angry or If I should be just get in their world and agree with what they think.

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Early on, down the path of dementia with my dad, a health care professional introduced me to the term 'Therapeutic Lie." It works very well for me.  I just had to realize that his view of the truth and what is going on, is just as real to him as my view is to me. So, as said before, it is better to enter their world, using therapeutic lies when necessary to make them comfortable, than try to force my view upon them. All will be forgotten soon anyway, so just 'go with the flow' and be happy, if only for a few minutes.
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Moriah, I agree that the variability of Lewy Body Dementia is challenging for caregivers. Embrace the "good" moments and minimize the emotional impact of the bad. I used to play a Sudoku board game with my husband. I picked good times, so usually he could do it very well. When I saw I guessed wrong about how good the time was I'd just say, "I just can't concentrate on this now. Do you mind if we play again later?" Better to not push it into frustration.

Studies have called "the caregiver burden" with LBD the highest of all dementia types. The behavioral issues start right out of the gate and don't gradually appear as the disease progresses. You're a brand new caregiver and you have to deal with paranoia and hallucinations and possibly belligerence, etc. So understand that it is tough and don't put off getting help "until I really need it" -- you need it now! A support group, especially if you can find one for this specific disease, can be a life-saver.

Moriah, does your husband know and understand his diagnosis? My husband did and that was very helpful. When he was frustrated at having a bad day I could hug him and say, "You have a very intelligent brain. You have an excellent memory. You've been a very successful engineer. But today ol' Lewy isn't letting your brain work right. It is not your fault. Let's hope tomorrow will be a little better."

The absolute worst kind of dementia is whatever kind our loved ones have! They are all terrible. But on some objective measure LBD ranks as especially hard for the caregiver. Give yourself credit for hangin' in there!
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No matter what answer or information you provide -- even if you know it is not "the truth" -- never think of it as "lying" to someone with Alzheimer's or other types of dementia. I teach this topic to health care professionals and family caregivers quite often. There is the "reality of truth" (what you and I know is really happening) and the "truthful reality" in which a person with dementia resides (what they perceive, feel, and believe is real to them). My mom often talked about my dad as if he were going to come home from work and walk through the door, even though he had passed away 20 years ago. To her, my dad was still alive. It was never a "lie" on my part to speak with her as if her "truthful reality" was the actual "reality of truth." Many experts state that it is often more harmful to try to convince someone with dementia that what they know, feel, and believe is not real. That's why much of the advice is to join them in their world, to agree with them, and to gently change the subject or distract them if it is leading to increased anxiety or frustration. Not all questions (like "when can I go home?" can be easily answered. I have watched CNAs and other staff members at nursing homes reply to residents who ask that question with "You are home. This is your home now" and that seldom has a calming effect on the person who is living in a different -- yet truthful to them -- reality. It would not be a lie to provide an answer that matches their reality. When a person asks if they can go home, I usually instruct staff and family caregivers to say something like, "I'm not sure what the plan is, Marge. I know we are going to eat dinner first" (or do some other activity first). This way you provide a somewhat reassuring answer and can redirect the person to give them something else to do or talk about instead of obsessing over when they can go home. I hope this is helpful to you.
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I went through vascular dementia with my mother and am now trying to cope with my husband's Lewy body dementia. He has been diagnosed for two years and I see differences between how the two dementia's progress. My mother was five years into the process before significant changes started occurring. My husband after just two year's is doing things I don't completely understand. He has great difficulty with the simplest of chores, ie making a bed, sometimes he completes the task with little problem other times he can't figure out or seems completely unaware of how to finish what he started, he can one time follow instructions on how to use his new phone (he wanted) and then can't find the right kitchen cabinet door to open when I am standing right beside him telling him in real time. I am so worried and don't always know whether to help (which makes him angry if he doesn't think he needs it) or stand by and watch him struggle knowing he can't figure out something.

What scares me the most I think is not knowing what to expect from one day to the next and not knowing how long he will have to struggle with this. Watching my mother for four years battle (and she did) her disease after the decline really started breaks my heart for my husband.

Any advise or experience would be so very appreciated.
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Can i get help on if I need a will or not?
Thanks
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Absolutely lie, it was the hardest thing I ever learned but the daycare taught me, they do it all day long to keep their patients happy. I went to a support group and the alzheimers association was there, they said "treat your loved one as if the customer is always right!" Agree with everything they say and know you are helping, not hurting them. I understand the difficulty but if you tell your Dad his wife died, he will grieve all over again for what? The next time you go he will ask for her again, you see? It does no good, it only upsets them. My Mom still asks "wheres Dad" who has been gone for many many years and I say "Hes on his way home, traffic is bad" then she says "oh really, ok" and is over. Sometimes I say he is in the bathroom and she STILL is happy with that answer. Your poor dad lost his wife and then his home, give him this as a gift, keep him happy no matter how you feel about it. Good Luck and hang in there.
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J:

Watching someone cross that thin membrane between our reality and theirs must be disheartening. Especially when you're having to fib and play along.

Daddy is used to say "When you tell the truth you don't have to remember anything." I had to look into his eyes when answering questions, so I couldn't lie even if my skin depended on it.. He didn't deserve it, and my conscience would haunt me all day if I did.

Here in the US, everybody expects me to be truthful at all times. But when I give them honesty most of them don't know what to do with it. Still, I've never asked myself if I should lie or not, but rather "Am I going to regret this?"
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Make it work. Force your hand. Maneuver the situation for the moment to avert a problem. It's not a lie...it's a departure from the truth (small smile). When you are able to step in and settle a potentially emotionally situation, well then everyone wins! Right? Good. Do it.

Nimue
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My Mom is still at home with 24/7 home health aides. I am freaking out about when her money runs out. (Money that has been put in an inheritance for myself and sibliings) We just can't see putting her in a home as she is legally blind, hard of hearing and has a swallowing problem. The aides cut her food up really small and help her eat. We know this could not happen in a nursing home. She is near the last stage of dementia and I don't know if the aides will still stay with her when she doesn't remember anyone. She has been getting feisty with her aides and hollers and them and tells them they are fired. Then she doesn't remember saying that. It is heart braking to see her deteriorate.
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With my parents, I would get into their world so as not to upset them. For example, when my mother thought there were people in the house and that they wanted her to cook for them, I told her to relax, that I would come and cook for her if Dad thought they needed help. If she truly has Alzheimer's, then arguing does no good.

With my father, we were told he had sudden onset Alzheimer's after he went into a nursing home for rehab on his back. What really happened, is that he was given antipsychotic drugs without our knowledge or consent. That was what was affecting his mental state.

You should ask to see your mother's medication list, and talk with the doctor to see if any medication if affecting her cognition. Something like Risperdal could make her Alzheimer's worse.

Good luck with your mother. It is a tough situation for all family members. Just enjoy your mother in the level she is in each day, and tell her you love her.
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Remember ARE: don't Argue, Reason, or Explain to someone with dementia. You have gotten some really good advice from everybody - consider it. Another couple of excellent books are (1)The 36-Hour Day and (2) Passages for Caregivers. I forget who wrote the first one, but the 2nd one is by Gail Sheehey.
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One of the things I read here, early on, is to distinguish what is a problem for my Dad (or the person in care) versus what is a problem for ME (the caregiver). And that, as much as possible, you solve the problem for the person in care. Brilliant advice, and a useful construct when looking at issues.
Your Dad is missing your Mom, when he asks why she is late. Telling him she is dead won't stop the problem of him missing her. Telling her she is at choir, or visiting her sister, and will come by she can is a message that will help soothe him in this moment. And that is the right thing to do. That is the helpful thing to do.
"Lying" is a problem for you. And the way to get help with that is to re-read the astute advice of everyone above. Talk to the social worker at the facility caring for your Dad. Re-frame what "truth" is: if he had the capacity to retain and act on what you tell him, you'd have to tell him "the truth." But he doesn't. He never will again. You want him to be better oriented to the more objective truth but that will never happen, even if you try to push him toward it ("Mom's dead and you can't live alone again, Dad.") So head toward this TRUTH: You love your Dad. You want as much peace for him as possible. If he is more peaceful believing in this moment that your Mom WILL come sometime, just not now -- help him. Things will change in a few hours or days, and go there with him. Meet him where he IS, not where you wish he could be. When you argue with reality, you lose 100% of the time. In this case, it's his reality you need to address. Good luck to you!
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Read "Talking with Alzheimer's" by Claudia J. Strauss. I can't recommend it highly enough.
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I agree with those above. My mother is in the last stage of dementia so I have been through the exact thing as you are going through. At first, I tried to be honest, but I soon realized that was not beneficial, and even harmful. After making her cry by "reminding" her that my brother had died, I said "never again". About wanting to go home, I would say that the bus canceled the route and we would have to wait til tomorrow. When asked if a sister was coming to visit, I would say she had to do something and would be by the next day. I got into her reality, not mine, and just went with the flow. You wouldn't believe some of the conversations we had! My husband shook his head in amazement with where the conversations and how I kept in the game of make-believe (make believe for me, reality for my mom). We had some fun times, once I got over trying to make her understand. I wish I had made notes along the way. When my children were small, there were stages they went through with good and bad for each stage, but I would remind myself it was just a stage. The bad thing about this stage with your dad is that it's hard to talk to him but the good thing is he can communicate (this may diminish). Enjoy and focus on the good things and ride through the bad times. You can take pride in that you are honoring your father, and even your mother, by being there for him.
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Jack,
1) Take Bridget's advice and learn as much as you can about the disease your father has. It will make your journey with him less stressful for both of you.
2) Enter his reality. Don't try to correct him or teach him the truth. If this is 1979 in his world then your mother isn't dead. If you can sense where he is coming from, you can give him a comforting answer that fits his world. "It is Wednesday night, Dad. That is when she goes to choir practice." This can be very, very hard. It will help to do #2 if you are done #1 first.

One really tricky situation is when what the dementia patient believes is painful to them. If Dad says, "Someone keeps stealing my reading glasses and you won't do anything about it. You don't love me," you don't want to agree with that! You can try somthing that acknowledges his feelings and offers reassurance, without arguing with him. "Oh I am so sorry that your reading glasses are missing again! I'll help you look for them, in case they got misplaced. And if we don't find them I'll go down and talk to the staff and tell them to be on the lookout for them. I love you very much, Dad, and I'm sorry you are having this problem."

I hope your visits will become less stressful and that you can find some joy in the remaining journey with your father.
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Yes, lie to your father. Every time you tell him Mom has died he relives the initial grief, anger hurt and pain. Why do you want to do that to him? When you see your father and he wonders where his wife is, let him know she is running late and try to change the subject. You have to understand that his brain is going back in years and he will remember his wife and their life for years, then he will go to his childhood and may think you are his mother or father. Try to change the subject and get him back on task. I would hope that you have him in a memory unit of his facility and they should have a contact for you to speak with. Get yourself and all siblings in a support group so you can understand what he is going through and how YOU can better educate yourself to understand his world. His facility should have a contact person, social worker you can speak to on how best to handle your fathers illness. You and all of your sibling will handle him much better if you educate yourselves on ALZ, and or dementia. You heart will feel better leaving visits with your father instead of hurting and confused. Do not force stories or information on him just to let him know what is right, he will forget as soon as you turn your back.
Sorry if I sound harsh, I work with seniors who have Dementia and ALZ. Families must educate themselves and not run away from the problem. Our goal is to give the family member the Best Quality of Life and time with family. If you do not educate yourself on the illness you will been in pain after you visit with your father. If you listen you will be amazed at how much fun he probably is and you all can laugh a lot together.
Blessings,
Bridget
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Hi Jack.
I'm not in your situation, yet. Mom is still living at home but is having memory issues, repeating things over and over again, can't balance her checkbook and just last month totaled her car. Thank God, that problem is taken care of and she didn't kill herself or anyone else.

To answer your question, from over a year of reading and dealing with Mom's deterioration, I'd say lie and enter your Dad's world. He is still your Dad, but his reality is no longer yours and you can't fix that. No amount of insistance on your part will make him remember the truth as you know it. So, why upset both of you?

Your need to ease your own conscience by not lying isn't going to help him or you so be kind to yourself - and to your Dad. It is sad and confusing, I know.

My brothers tried to convince Mom she is imagining things for a long time. It hurt her feelings and made her very angry. I tried to convince them they were wasting their time and they finally get it. So, we just try to redirect the conversations or enter into her world.

For example: Mom tells me she's angry because she's made enough food for everyone but they haven't come home yet. The table is set, it's 6:30 and she hasn't eaten. "Dad hasn't come home from work and I don't know where the kids are".

I say, "Gee, Mom, it's late and you must be hungry. Why don't you eat. If anyone else shows up they'll have to take care of themselves."

Mom will continue the conversation telling me her feelings: anger, frustration, etc. These are real emotions and reactions to an imagined circumstance. She lives alone. No one is ever going to show up. She's wasting food sometimes because she gets mad and throws it out. But, she's still functional enough (accordint to her medical doctor) to live alone.

You are fortunate that your Dad is in a facility where he is safe and confined. Take comfort in this and don't drive yourself nutty over things you can't control. You have enough to deal with!

I just started reading a book, "Create Moments of Joy" by Jolene Brackey. You can view it on Amazon.com and read a few pages online. I got it because it is a journal format which I think will help me in my journey with Mom as her condition deteriates, as it will.

You are a caregiver, jack, in good company here on AC. I can say from personal experience, I find more support, information, compassion and understanding on this site than I ever knew existed. Even though your Dad is in a facility, you are still a primary care giver. Take care of yourself and your sister as you travel with your Dad on this journey. God bless.
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