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I am very tired of lying to my father. I tell him he can come home if he works with PT and gets stronger he can come home. That is a lie, my mother and sister won't let him come home even if he does regain strength in his legs. He keeps asking me when he can come home? I have to lie to him to tell him that he needs all his strength I feel bad telling him that he could possibly come home when I know he can't. He's got just enough sense to realize he's in a place he doesn't want to be. There's been several lies we've told him, his sister recently died and momma decided not to tell him and I feel awful about that too - even though there was nothing he could do. But even though I disagree with mom, I do see why she didn't want to say anything.


Should I tell him the truth and be honest or keep that little glimmer of hope alive so he won't just give up? I want him to be comfortable if not resigned to being there, but I just wish there was something I could do other than just visiting him. I've tried to play games with him, do the crossword puzzle with him, anything to get him interactive but he gets so frustrated cause he doesn't understand the rules or it's a bit difficult, he just shuts down and refuses to cooperate.


I know ya'll are probably tired of hearing me talk about my guilt and I'm sorry, but ya'll are about the only ones who understand - I mean my husband is excellent about trying to help but even he gets tired of me - just going around in circles and spinning my wheels...


I appreciate all ya'll listening to me, thank you

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My friend told her dad when he asked to go home “This is your home.” Seemed to work. Another when he was admitted (he had been in respite care w no visits) for good told him that you’ll be here & now I can visit you.
what ever you tell them if like my hubby only remembers for 5 seconds. I also suggest doing jigsaw puzzles w him. Maybe only 29 or 75 large children’s puzzles. Praise him for each piece he does. We also did simple dot to dot w large numbers. Praise them as much as you can cause remember 5 second memory.
My hubby passed suddenly after 12 yrs of ALZ & 3 mons. In memory care.. My heart goes out to all as it is a horrible puzzling disease.
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Laceysterror Jul 2019
thank you so much for your suggestions! I had never thought about jigsaw puzzles, what a great idea!

I'm very sorry for the loss of your husband, I hope you've found peace.
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My hubby is a young 72 but living with Parkinson's and related dementia. He is home with me as his main caregiver, and two hired wonderful ladies, all sharing his daily care. He still asks to go home. He does not know from day to day who is taking care of him and where he is. I just reassure him that he is fine, he will be looked after well and not left alone. Then I change the subject, usually to let's have a snack or exercise (stand, stretch, reach, walk in place, etc.) and he moves on. Not fibbing, they mostly just want to feel secure and not alone. Good luck.
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I understand what you’re dealing with. My dad is in the same predicament. He has been in the memory care facility now for two weeks. I told him he can’t come home until he gets better. If you know deep down in your heart that he isn’t leaving, you may want to tell him. Try to make his stay as pleasurable as you can. It will continue to eat at you if you keep giving him home to leave and he never will.
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Country mouse response is so on the mark that I am repeating it in part:

You could drop the "you can come home if" half of what you're telling him. Stick to "do your PT and let's see." Or, "we'll just have to see how it goes." Or, "Rome wasn't built in a day." Or even "I just don't know, Dad. But meanwhile, let's do x, y, z and make the best of things, eh."

It isn't guilt, by the way, it's sadness. It's sad that your father needs this level of care, and sad that he can't himself grasp the situation, and sad that your mother and your sister and you don't see eye to eye altogether on what's best for him. But, so, - stop expecting yourself to get over it and stop "going in circles." You are having a normal response to a sad situation, it is *hard*. Be kind to yourself.

I'd add that 'telling the truth' is a value or behavior we are taught as children. It is intrinsically woven in the fiber of 'American values. However, this moral fiber of truth telling DOES NOT INCLUDE dealing with brain disease/cognitive decline. Communicating with a person inflicted with dementia is learning a new language, a new way to express that language. Some people with dementia only have HOPE. Don't take that away.

There are grey areas or speaking as a designer/artist, there are different shades, tones and tints to a hue; there is a spectrum of truth, and hope is a part of it. It is not a black and white situation and needs to be tactfully addressed. Taking hope away leaves stark blackness.
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No problem! The therapeutic lie is one of the most essential tools you're going to have to use from now on. I feel bad having to use them every time I see my Mom. It always works but I do feel bad. All you can do is keep moving forward. There is a light at the end of the tunnel, you'll just have to get there one day at a time. Hugs.
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LaceysTerror, I'm sorry you are going through this. I ran the gamut for many years with mom's dementia, falls, in/out of hospital, rehab, etc. She passed 4 months ago after 3 weeks in Hospice. She was in and out of it toward the end. I recall she woke up a few days before she passed and asked me when we could go for a walk. She had been totally bedridden for some time. My heart broke as I struggled to answer. Then, I looked her in the eyes and answered, 'soon, Ma, soon.' She seemed ok and fell back to sleep. There are no easy ways.
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mmcmahon12000 Jul 2019
I'm so sorry for your loss. Hugs.
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I would tell him in a small amount at a time. He needs to know the truth. It's the hardest thing you'll ever have to tell him. Prepare before you talk to him with positive things this will bring.
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mmcmahon12000 Jul 2019
I wouldn't. It can result in the patient becoming so stressed that they can hurt themselves or others...or both. Upsetting an Alzheimer's patient does nothing for their quality of life. If anything, it just makes things worse for them in the short term.
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I HATE being lied to - and I am sure that many patients with dementia feel the same way. Just because they are "ill" does not give us the right to lie to them and give them "false hope."

Every time I visited my elderly, confused father, I talked up the "benefits" of where he currently resided, how he could get coffee 24/7 and snacks from the coffee station, how somebody else was doing the cooking and cleaning, etc. I would remind him that he had several strokes (which was true) and how it was no longer safe for him to live alone in his house, how the house had become a booby trap for his shuffling gait, etc.

In other words - I never came out directly and told him that he was never going home. But I did "talk up the benefits" of his new existence and pointed out the drawbacks of his old existence.

Once he began to make the association of the house as an "unsafe" place and the ALF/NH as a "more safe" place, he talked less about his life at the old house and seemed to accept his new residence.
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Nancynurse Jul 2019
You are very fortunate that the distraction and redirect technique worked with your father. Not so with my mother. She would not accept that there was any change in her ability to do things. In her mind she is still a young mother and farmer's wife. I admit I used to try to reason with her about how beautiful the place is that she lives and how much nicer than her house was.  This only upset her more that I was insinuating that her house wasn't good enough and what made me think she isn't able to cook and care for herself. I hate to my very core lying to her but if it saves her from suffering the grief of losing my father and all her siblings, parents and child I will do it to my grave.
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It would not help to tell your father the truth, just upset him. The term that is often used is "therapeutic lying"--that is, not telling the truth in order to help the person. Many, perhaps most, people with different forms of dementia want to go "home." But to them, "home" is where they were brought up, where they felt secure, where they were before dementia came upon them.

Distraction often works. Outright disagreement with someone with dementia is seldom helpful, so you need to strike a tricky balance. Don't promise the possibility of going "home" if that is not possible. Distract him as much as possible. Don't contradict him, and try to help him settle in his new environment.
Sorry, but as numerous respondents have said, there is no easy answer.
Love and prayers.
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I can so understand your situation. My father has the memory ability of a five year- old. And the question you pose is a good one, but let me ask: What would the truth serve? I have told my father the facts, and minutes later, the same question is repeated. I have learned to distract the conversation topic. I feel bad for doing it, but under the circumstances, telling the truth only makes you feel relieved for a moment but for him, if one nugget gets stuck in the head, it opens up a new can of worms. So, to tell the truth or prevent a ongoing crisis, spiral of repeating fear/concern/disappointment/depression etc... Don't beat yourself up for letting him have a gentler existence. It's like with a kid, we don't tell them the horrors of war, Ebola, or gang violence, we know it can cause nightmares. While we wait to let them (children) mature and handle the truth, we can't do that on the flip side of dementia or Alzheimer's.
This is one area where becoming the parent and filtering the negative is to be applied. Hope this helps. Best of luck to you.
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I have a very sad answer. In my humble opinion, when the time comes that people must be placed, let's face it - it is the beginning of the end. In some cases if they know this is "it", they will soon die of despair and heartbreak. But, isn't that kinder and more humane if they can let go so they will be at peace and no longer suffer? If that is the case, let nature take its course - you are not adding to the suffering. There really is not much more you can do or say or not do or say that will change what is. It is perfectly understandable that we don't want to let them go but perhaps they would feel happier knowing they would soon be gone and at peace.
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Don’t worry about “fibbing “ because even if you brought him back to his “house “ , he would still say he wants to go home. I discharged my mother w dementia who is totally immobile from the SNF 2 years & 4 months ago. She is in her own house...(which I now own, but she forgot lawyer did 𝙻𝚒𝚏𝚎 Estate..) but asks often to go home...back to the apartment she grew up in...she often does not recognize the house as the home we’ve lived in for last 58 years ... Please leave him where he is ..hugs 🤗
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I feel like their happiness with whatever time they have left is all that matters and taking away HOPE is a life not worth living. I would suck up my guilt, continue lying & create as much of a spin on happiness as possible. It is what I am doing with my mother.
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I'm one who appreciates honesty no matter how bad the news, so I tried to be as gently honest with my father in memory care as possible. He also wanted to be with family instead of in an institution with a bunch of strangers. Since I couldn't bring him to my home, I decided to try to participate with him in whatever was going on at his place as much as I could and encouraged family members to do the same. It became my second home. I tried to help him maintain some independence. We would still go out to dinner and other places when weather was decent. I would eat with him at group meals, participate in PT. I had also hired a family friend who watched TV and exercised with him. We modified games/activities so he could participate. We had a small sofa bed so anyone could spend the night (but didn't). Our goal was to become very familiar with the place and people so we could keep track of things and facilitate his integration. I think he got reasonably good care but he, too, was aware that it wasn't home. He thought he was in another transitional care facility. I don't know if it was the timing or the place but he eventually gave up trying to get stronger. That is the beginning of the end. He was there about 7 months. He always said he wasn't depressed but I think he was bored having everything done for him and having no control over it. Everyone becomes task-oriented and I have yet to see stimulating activities for people in memory care. But they were there when he needed help. He denied having dementia and we didn't bring it up except to answer his infrequent questions about why he couldn't figure things out.If you can get the rest of your family members involved in keeping him active/interested, that might help. If you find a way to share a laugh, that is a big help. They pick up on your anxiety.
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Dear Lacey
Hi. I have the same situation with my mom.
She hates where she is and there is nothing I can do about it.
It breaks my heart everyday.
But to your question
i choose to still leave hope in telling my mom maybe she can come home but I really can’t tell you when yet.
She feels like she still has an out when I say this too her but now after 8 months of being there she is trying to settle in Alittle but everyday she says can I leave now...,

Its hard I know. It doesn’t seem to affect my family members as it does me.

I say give him a little hope or they will just get really depressed.
I hope this helps.
I say to myself everyday I’m doing what’s best for my mom so I don’t feel so guilty and upset....
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Wow I see all these answers and realize most of us are in the same boat. I had tried telling my mother the truth in the beginning of her dementia but found that the information just depressed her and made her experience the loss of my father and brother all over as if it were the first time she got the news. Diffenently not worth it. Now I try to mix it up a bit and say something different from time to time. Like saying my Dad is at a church conference down south like he used to go to occasionally. She always hated him being away to them but accepted that as a church elder he had to go. She has started fighting with staff in the evenings wanting to get in her car and go home. So now we tell her that the car is at the garage and needs a new transmission. That it is expensive and she has to stay at the hotel she is at until it is fixed. It is funny but she never seems to question a bizarre answer like that over the truth. If I tell her she needs to stay at Rehab because she is falling to much she curses me and says I don't know what I'm talking about. Lying to her seems wrong but if the truth hurts that much, how can the lies be wrong?
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I think that every situation is different and I wish I had the answer to ease your mind.

We have tried both with our mother who is 91 and living in memory care. Nothing sticks. She keeps asking the same questions over and over. Dad died in 2011 and she doesn't remember that. She thinks that her mother, my grandmother is worried about her and doesn't know where she is. She calls us and is afraid and cries and has gotten very angry in the past. It is heart breaking.

Mom knows she is in a "lock down" situation and on one level I understand her frustration. I am questioning the capabilities of the staff there (I have met some of them, they seem OK) but how well are they trained for this kind of care? It is most distressing for anyone because of the behavior.

Mom still knows who we are and has a good support system of friends and relatives who visit her and take her places; and it is always so hard to visit and then to have to leave. My brother, after his last visit, turned around and went back because Mom was so heart broken.
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Definitely keep lying as hard as it is xxx
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I told my dad that I didn't know and his abilities and what the doctors said determined that.

Then I changed the subject to anything that would engage him.

I have the same difficulty with therapeutic fibs, I am not a good fibber and anyone that knows me can see right through the fibs, I don't think I need to learn how at this age, but I didn't want the same conversation that led to no where every day.

How are you doing, finding ways to take care of you and divert dad?
Hugs, it is so difficult to travel this journey.
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Try to change the subject and get him on a different topic, rather than lying. But I know it often happens when you are leaving a parent and they can't leave. I find with my mother, if I settle her down for lunch in the dining room and then leave, it goes more smoothly. Try not to blame yourself. You are doing the best you can. Don't torment your husband, your father would not want you to ruin your life for him. Try to make your life as good as you can. If your father is in a good facility, try to enlist their aid when you are leaving. If he has dementia, often wanting to go "home" is an expression of wanting things to be the way they used to be.
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Let me start with the death of his sister.
Do not tell him she died. He will feel bad and then he will forget that she died and will ask again, you tell him again and he thinks she just died and will go through the mourning again then forget, repeat, repeat.....
Same thing with telling him he can not come home. He will feel bad, will be upset and when you return he will ask again, he will feel bad, be upset, repeat, repeat.
You could vary it and tell him..
when the Doctor thinks it is safe for him to come home....
When he is stronger he can come home.....

Redirect the conversation, go for a walk with him either a "walk" or with him using a walker or in a wheelchair. A different view, point out the lovely garden, the art work on the wall, go get a snack. (I could redirect my Husband with a cookie and some lemonade!)

Do not feel guilty about the "therapeutic lies" we all do it, have done it or will do it.
Many people will say they "want to go home" and they actually mean back to when they felt well both mentally and physically. So "home" might not be a place but a time.
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PaulaO Jul 2019
Your situation sounds so familuar to mine ten years ago when my 81 year-old father with dementia became much more confused after his wife died. She had been in hospice care at home, and although my father sat by her bedside with her for her last hours, he had forgotten it by the next day. My sister and I spent weeks answering his same bewildering question of "where's Nancy?". One day I told him she's away right now, and that seemed to be the right response for him from then on.
Blessings,
Paula
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I think it's perfectly acceptable for you to answer your dad's questions with "I don't know, dad, but I'm here now". Your dad's questions about going home may be rooted in a need that he's expressing. If you can meet that need then do it but if you can't, then find comfort in the fact that he's where he needs to be and focus on his quality of life.
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You are causing yourself a lot of unneeded stress, tell him the truth so he can settle in where he is. As for the guilt, this is a self imposed emotion, fueled by fear. Perhaps you are afraid of disappointing him or is there some other fear that is driving this emotion? Have you considered going to a therapist to help you deal with this relentless fear/guilt? Your husband is on to something, having recognized that you are just spinning your wheels, might take his words to heart and do something to correct this. You cannot live your fathers life, you cannot make him happy, happiness comes from within. Not my rules, just how it works.
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Heaven is our ultimate home. He will be going home when he is ready.
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Tell him the truth! My brother died 3 years ago. We all visited him every day including my mother. She was with him at the VA when he died. My mother handled his death very well. She went to his funeral. She sometimes forgets he died and I just say "mom you know he died 3 years ago you just forgot". Games are probably not a good idea. How about putting on some music, watching a concert on tv, my mother loves the piano, I bought her a portable and she bangs on it, we just love to hear her make music. Things are different now almost childlike and you need to adjust your thinking. Talk to your dad about old times, take out old photos. Surely you can think of something he might enjoy. Please be honest with him. Too many people lie to their loved ones and it is not right. I believe most can handle it. I never once lied to my mother. I am upfront and direct. I hope you make the right decision. The best to you and your family.
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You can’t control your mom or sister, just yourself. Visit often. Try to find therapeutic activities that don’t frustrate him. Checkers? Go Fish? Looking at photos? Take walks if he can. Ask him about his memories. Record his answers (audio and/or visual. They will be precious to you.
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"DAD, home is wherever you are, and whenever we are together, like now".
Hugs.
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Lacey

You obviously love your father very much.
That’s apparent.

You worded your post in such a way as to indicate you might be at odds with your sister and mother over your dad’s care. Look at that a bit. You might be caught up in a right vs wrong pattern with mom. That’s all subjective.

I second the suggestion on pet therapy.
Do you have a dog? A therapy dog could really comfort your dad and it could be a special bond between the two of you. No rules to remember. Just pet the dog. When you come in the door he will be happy to see you and the dog. You could visit awhile and let him watch the dog and then leave until the next time. See what’s available in your area. I lost a dear friend (Alz) a year ago and the dogs she had access to were an obvious comfort to her.
Music of his era is also a comfort. Simple enough to pull up YouTube on your phone and hear a couple of songs. Ask him if he likes this song. You might find him singing along. Your mom might be able to help you come up with old favorites. These are things he can hang onto going forward for a good while. Sure he will still get anxious about where he is and what’s happened to his world. You can’t fix that but you might be able to make him more comfortable while you are visiting. That’s a good feeling for you to take home with you rather than the guilt you have now. And regardless of what you are able to do or not do, don’t doubt your love.
Hugs
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Invisible Jul 2019
People always recommend music. I have to say that my father had an extensive music collection and was so not interested in music anymore! He was very interested in little children and dogs.
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Laceysterror, for you to be lying to him, you and he and your mother would have to be in agreement about reality. He’s not there. When he says he wants to go home, he’s speaking of being in another past part of his life, or somewhere else, but probably not the past he was in before he was hospitalized, which was no doubt a frightening and uncomfortable time for him.

My wonderful LO mourned terribly when she entered a nearby AL, and would call for her mother and sisters, long deceased, and say she had to get back to them. I would often say “I’ll take care of that” or “I’ll be sure they don’t worry” or similar
comments. HER BELIEF was that her mother and sisters are still living. There was no way besides breaking her that I could have ever convinced her that they were gone. That being so, how could I claim to be compassionate and protective of her if I had tried?

She was always a very anxious woman, and I could see absolutely no way to justify exposing her to more anxiety by telling her facts that I could not change
about a life that she no longer had access to.

If you love your father you will look for ways to help him become comfortable and relaxed. The words “safe, protected, and comfortable” justify whatever alterations you need to make to “truth”.

I visit often and enjoy discussing things with her that she finds interesting. He may just like you to visit, and be with him, and not try to entertain him.

I remember very clearly the awfulness of “spinning”when my mom became total care. She lived for 5 1/2 much better years in a local nursing home than she’d lived in her own home for the 25 years before that.

If you happen to be religious, you might consider this short poem, that my present LO taught me when my mom (her sister) began to require full time care-

“If in Life, You do your Best-
God with Love, Will do the Rest”.

Hope you find peace.
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Lilacalani Jul 2019
You gave a beautiful answer -- thank you! :)
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I think the lies seem so strange to us because we are in the real world where truth is important, as confusing as it can be here. Many of the ones we are caring for are in another kind of world. Would he remember your answer anyway? I like the answer "I don't know, Dad, no one has told me what's next, but right now we just have to get through this part of you getting better and it's going to take a while". It isn't a lie. You don't really know what the future is for him. Will he be okay with that? I don't understand the guilt. You are there for him. What else could you possibly be doing? Maybe you and your dad both need some distractions. It's difficult with him when he can't remember rules for games. I know. My mom can't even do puzzles any longer and gets frustrated with cards and even with reading. Pet therapy and stories of her long ago past cheer her best. I hope you find something that helps.
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