Mixed messages; What should I do, lie or truth?

Hugs, Saralee

You will figure it out. You have received good advice here. Best wishes for and your mom.

Maybe the middle ground between lie & truth?

I agree with Peanuts "I would suggest giving her as much information as she can handle at the time". Depending on mood that day.

When the 'I want to go home' came up I said to my Mother "Yes I want that too" & also "this is the best we can do right now". Both true.

Don't try to put her through the emotional trauma of giving a straight answer. Change the topic when it comes up. Her mind is broken, even though "high functioning."

With dementia-- re-direct. Don't even try to speak lie or truth-- re-direct-- say we will talk about it when I have more information- in the meantime-- we need to help you find helpful ways to keep you occupied and not bored-- so-- like ----- AUDIO BOOKS !! Great authors-- if she is inclined-- I am sorry I like Clive Cussler Dirk Pitt action novels--- the list is endless-- great sic-fi -- even Harry Potter or --
OR--- you could get some Arthur Upfield Aussie Murder mysteries and read them to her yourself ! BUT-- re-direct-- change the scene and help her feel greater invigoration-- My ma watched a lot of TV but did read newspapers a lot but over and over since she could not remember reading them the first time. ALSO-- take her for walks or rides in a wheel chair … bring her a snack !
Also hire some eldercare caregivers to distract her. Take her to a Alzheimer support group at a local church -- call 211-- they have a support group for you and an entertained group for her -- they sing and tell stories-- and are very entertaining ! I did it for years with MOM ! Now she is hospice and sleeps. Eh, bien, alors.

I learned this: appease, appease, appease. In five minutes shoe would have forgotten anyway. So, why upset her?

It upset me to have to "lie" but it is for her best. The kindest thing in the circumstances.

Yoh know, in my work as a geriatric social worker, I have found that the word home can mean many things. It could mean her adult home, childhood home,or heaven. I would suggest giving her as much information as she can handle at then time. Try to change the subject if possible in order to distract her. Adjustment to a new living situation is hard. Depending on how she is during your visits, you may want to adjust the length of the visit or if all of this is wearing you out, you may want to consider not visiting every day. We all feel so guilty when a loved one is placed in long term care that in order to ease all the anguish, we tend to overcompensate. Please be mindful of caring for yourself as well as your loved one. Good luck.

If she asks, then say the Doctors have to make that decision. If she doesn't ask, don't say anything. It is better that way. Mention how dangerous it is falling all the time and how unsafe she is. You are not being dishonest, just avoiding the question.

If she asks, then say the Doctors have to make that decision. If she doesn't ask, don't say anything. It is better that way. Mention how dangerous it is falling all the time and how unsafe she is. You are not being dishonest, just avoiding the quetion.

Perhaps try an honest conversation about their options since they have high mental functioning. Mention falls as being quite dangerous to remaining at home. Lying will just set them up for disappointment and sadness day after day, when not allowed to go home. Try to be upbeat and as positive as possible, not always easy. Focus on the positives. Are there things that they enjoy (music, radio and/or verbal storybooks)that you can bring to them since still high mental functioning? Are there activities there to participate in? And have a conversation... hear them out. What are their concerns? What are their fears? LISTEN to your LO. Take care~

There is nothing wrong with using what I call CPMPASIONATE DECEIT. This is not lying it is doing what is really necessary at this time. If she is close enough and you can go and visit her as often as you can. If she asks about going home tell he they are working on it.

Just leave her there & make up something...like the house is being renovated, painted or whatever.....& there’s men & workers everywhere & danger...& now YOU take yourself (& a friend?) on a well deserved vacation!!!!
Hugs 🤗

Would your LO understand if you explained that you are unable to take care of her? As though it is more your own limitation as much or more than her own problems?

Gmorning.
This is one of those questions where first thing I think is:
You know her best. !
We all need to fudge a little. You know, if it's in some ones best interest.
Is it?
Could you actually go thru with it?
in any case, good luck when u look at her cry because she will.
Boy, funny how life brings us full circle...

Some people feel telling the truth is best, however that is hard on anyone, even more so when dementia is involved. It will upset them when you lay it out and they won't remember what you said, so you will have to repeat this over and over, which will have a negative impact on you and them, every time!

True lies are told to hurt others and/or protect oneself from something negative they did. The fibs/little white lies we tend to use with dementia patients are NOT done to hurt them. Giving them a little glimmer of hope is not a bad thing. It leaves the door open a little bit, rather than shutting it in their face. You know the truth, but I find this a much more palatable option.

Laying the blame on others, such as the doctor(s) can take the onus off of you, at least at the time. Encouraging the person to work hard to meet the doctor/release requirements can give them a purpose to reach that hopeful goal. In your case, this is hard if she is blind (is that 100% or legally blind, but has some minimal vision?)

Other suggestions are to say you are having work done and no one can stay in the house. This can be repeated, just no firm dates or time frame for completion. Soon, later, they're still working on it, whatever you can think of.

Redirection/changing the subject sometimes works as well. Respond as minimally as possible (don't argue or try to reason with dementia, it is a futile battle!) and try to focus her on something else, something she might enjoy. Let's get a snack, cup of coffee, encourage remembering older times, etc.

You did mention visiting for long periods (8 hours?) At least for now you should consider cutting back. She has only been there a week and adjustment periods can be weeks, months or more. They recommended not visiting for the first 2 weeks when we moved mom to MC. The first 9 months she hounded my YB any time he was visiting to take her back to her condo. That changed to their previous home and asking about her own mother! The good thing is she has never really asked me to take her "home." I think somewhere in that tangled mess she knows better than to ask me!

I would also attempt to stop by and observe - don't let her know you are there and see how she is coping. MANY facility residents will complain about the place, the food, the care, whatever, just to complain and beg to go home. When surreptitiously observed, often people find their LO is participating and getting along just fine. If she isn't, but is staying in her own room and not joining in any activities, perhaps some consultation with the staff might help to figure out what might interest her (again, being blind is a real hindrance!)

It seems you have a problem with not telling LO the truth. I admire that in you. However, telling the truth to your LO about "leaving" seems distressful for her. Do not lie but avoid discussing her "going home". Try to divert the conversation in another direction. I find that is better than lying in the long run.

I don’t think you need to “lie” nor do I think you need to force a hard truth on her. Everyone needs a goal, something to work toward, look forward too and if your mom’s biggest wish right now is to know everyone’s “goal” for her is to be able to transition back home who are we to say it’s never going to happen? That said my instinct wouldn’t be to string her along with false promises either like “you are going home” and I would request the caregivers now saying that change their approach a little. Every patient, family and individual disease journey is different so my guess is they mean well they just don’t cater their approach to individuals until they know them or family asks.

In you mom’s case by the sounds of it her reason for being there now has more to do with her physical limitations and the knowledge her cognitive issues may get worse rather than cognitive being the major issue currently. So depending on how much she can consume and reason, you know this best, I would talk to her about why she is there, she has had multiple fall’s because of what the disease is doing to her motor function, muscles (whatever the case) and her eyesight. After the last fall it became clear to the doctors and you had to reluctantly agree that due to your own physical limitations rehabbing and retraining her to function with her new limitations wasn’t safe for either of you and more than you and a visiting PT/nurse could do at home. The goal is of course to get her to the point where it’s safe and healthy for her to move back to the house but it’s not going to be a quick process and it’s going to take a lot of work and dedication on her part which is why they/you have her set up in a more “residential” or long term rehab type situation than “hospital” environment. The last thing you want is to be responsible for her breaking a hip or having an accident that lands one or both of you in the hospital and until she’s at a point of more independence again this is the best way to prevent that, you just aren’t as young as you used to be!” I would also put more of the decision ownis on her doctors not you. In this same vein I would clue the staff in to the plan and have them cater more to the Hope her team can get her independent enough again to move back to the house but part of that is settling in to this new residence and proving she can be living more independently there. It’s going to take time so not asking for help when she needs it doesn’t help, this might be a fine balance depending on her determination but joining in group events, enjoying some social life there, navigating her room with her belongings...are all a big part of adapting to and mastering her new physical reality/life...

Give her the carrot if she wants it without making false promises.

I don't feel that I lie to mom... I DEFLECT.  Tell her this apartment of hers comes with assistance that she needs and that she is lucky to have such good help.  And then change the subject.  This won't happen one time or five times or ten times...it will probably continue to happen, but it gives you an automatic response and saves the moment so that you can have a less volatile/stressful visit with her.  There is no easy answer here, but deflecting is less combative.  I just don't see the point in telling someone with dementia something that is going to upset them...then they will forget and you'll have to hurt them all over again.  What is the point in that?

Do not lie to her...or she will keep asking, it is not fair to drag her along just to make her happy.

When the end was near for my mother and after her final trip to the ER and a stay in the hospital she chose comfort care and discontinued most of her medications. Aside from her stubbornness I did not question her mental capacity to make this decision. She had verbalized for a while that getting old was for the birds and that she just wanted to go to sleep and not wake up. I knew I was not able to bring her home for her final days and she initially agreed to a SNF. Once there she started the “I want to go home” chant. I reminded her that I needed to return home to work and my family (school had just started). That we could bring her home if she was able to get out of bed and walk to the bathroom with a one person assist. I offered to get a hospital bed for her so it would be easier to get up. After a day of struggling in the SNF with a two person assist she gave up and decided it was easier to just pee in her pants. The next conversation about going home included who she would allow to change her. When she decided that she didn’t want to have her sister or I do that she decided to stay where she was. I knew that if I just told her no that she’d be mad at me, but if I gave her a goal and options she would make her own decisions. She was still mad but at her failing body. Because I knew she still had her mind I never lied and I let her (with a little guidance) make her own choices. It was not easy letting her go and I spent most of the next two weeks traveling two hours each way to see her but she was safe and well cared for.

Saralee,
I'm so very sorry for this, especially that your L.O. is mentally functioning. This tugs at my heart so much.

Please do not lie. I do not follow that method, at least now, especially for big things like this. If you need to soften them, then yes.

A few of the replies I much agree with (thanks to all for loving advice). Such as be there with her. Hold her hand. Perhaps tell her you love her, and you wish you were healthy enough to live with her, but you'll do what you can to "live with" her when you can. (And visit whenever you can.)

My mother had us all sit down a year ago saying she must never go away to a live in place - always be at home. I know our days may one day come, though we hope to afford home caregivers in the near future.

Bring some of her favorite things from home - blankets, artwork, CD's, boardgames and cards, her journals, books...things she enjoyed seeing and using back home, to make her feel more at home... Bring home to where she is!

Hang in there. You are in my thoughts.

I am so sorry for what you are going through. I found with my mother it was best to always give her comfort, be it holding her hand, talking softly, letting her know I was there for her, etc. After all, this is a journey down a lonesome dark alley for them and it's comfort that helps. Not always the answer, but it helps. Then I always said, "What ever (or when ever) the Doctor advises. He knows what is best". That helped, if even for a few minutes. Your comfort, love and trying to stay calm will be a big help to both of you. Don't forget to take deep breaths. My best to you.

My out is that when the doctor gives me approval to move her back home..in writing, I will consider doing this, until then she must stay where she is.

I'm so sorry. It's so hard for both of you. Dementia is so tough! I'd recommend that you practice the Validation method, not therapeutic lies, unless all else fails. With the validation method, you address her underlying emotions, don't lie, but you can affirm her emotions and redirect, such as "You have a lot of great memories at home, tell me about them....where did you live before? Tell me about that" . Try to support her underlying wants, and try your best to redirect. It takes a lot of practice. I'm hoping your mom will adjust eventually, stay strong

I'm so sorry for you. It broke my heart when I had to transition my mom into nursing care. It's something I never ever thought I'd have to do and it killed me.

My mom eventually started to believe that she was living in her own apartment even though she wasn't. She convinced herself she was living above a mall and that's why she would hear activity. She ate all her meals in her room. Never ventured out. I can't say that I really blame her. But then after a year there they moved her into the rebuilt facility next door. I hoped it being a brand new place she would be happier there but she passed in hospital two months after being transferred there.

I would try to be as truthful as you can to your mom. You may have to gild the lily a bit but I think it sounds like this is a play it as you go situation so the "truth" may have to change from day to day depending on how your mom is doing.

I wish you the best.

Your choice is not “lie” or “truth”. I think one of the reasons the LO presently in my care reacted so poorly when she entered care was that some “loving” relative told her early in her stay that she’d never go home.

If the choice is a terminal illness causing progressively complex and painful symptoms, some perception, however altered, that a life that was known and enjoyed is no longer to be, OR a simplified and edited presentation of some familiar facts, no cruelty or over explanations, and a glimmer, however slight of the possibility of happier things, I’ll encourage my relatives to lie every moment they spend with me.

It’s not at all a lie to tell someone you really CARE ABOUT that you don't know when the doctor will permit her to come home (you DON’T KNOW, DO YOU?).
Ask yourself what you’d want to hear in the same situation, consider what you can say that will enrich and comfort and console her and say that, and don’t worry about anything else.

This is not a black or white issue. Don’t try to make it one.

With the dementia it is difficult to "explain" and have her understand and retain the information.
What she wants to know is "am I safe" Reassure her that she is safe, you love her.
You can tell her that you can no longer care for her safely and she is here because you want to keep her safe. But she will not understand that, if she does it may not be for long.
Hold her hand, be with her as much as you can.
As she declines the Nursing facility will become her home. As her awareness gets smaller and smaller it will become where she is comfortable.
You might want to talk to the doctor if she is very agitated there are medications for the anxiety that will help but not cause other problems, since she is a fall risk.

I don't think its fair to her to keep telling her she will be going home soon. Actually, I think she should have been told upfront that you could no longer care for her. That this is now her home. If she is "with it" then I don't see why you need to lie. She may still cry but she may adjust better than being told she will be going home.

Now, if she has Dementia, different story. We told my Mom that she was going to a new apartment and would be making new friends. My Mom was in the later stages, though.

Since (I'm assuming) it was medically necessary that she went it, you will need to allow her plenty of time as she adjusts to this major change. Are you visiting and calling a lot? It is recommended not to do this as she works through this "new normal" in her heart and mind. If you are confident of her care facility and staff, you may want to stay away for blocks of time, and just call her occasionally until she can get herself over the initial shock. Visiting and calling too much just keeps giving her false hope. It took my MIL 3 years to even get out bed at her LTCF. She finally did. I'm hoping your LO doesn't take this long. She is on medication for mood and depression but honestly it has made a big difference for her. Blessings and peace to you!

My brother is in Assisted Living because of Lewy's. Like your LO he is high functioning mentally. As in very. But his gait is very wonky and he is in danger from that and has chosen safety over what he would like, which is independent living. I am so sorry you are going through this, but can only answer if it were me. I would not lie. I would tell the truth and explain the why of it. And then allow her to grieve. Why should she not grieve and beg? Is this not worth grieving over? Allow her the dignity of the truth and allow her to grieve.
All that said, you know her best. Better than I do. Better than the caregivers who are not yet familiar with her. I bet you will get mixed messages here as well, and ultimately you will have to decide what you think is best. Sometimes therapeutic fibs are best for a while such as "they will help you here with your balance and we will see how that goes for you."
The thing I don't get is that we always think there is a way to fix things, that we are RESPONSIBLE to fix them. There isn't always a way to fix sad things. And it isn't our fault. Be as kind and gentle as you can be. You are doing your OWN grieving now, are you not? Would you want someone to lie to you?
I am so sad for what you are going through. For what your LO is going through. Of what my bro is going through. Of all the pain and uncertainty and trauma to all of us. Life can be so very hard. Hugs out to you.

I'm sorry you are going through such a traumatic thing, both of you, actually. I think the nursing home is suggesting you tell your loved one she'll be 'going home soon' just for now, while she's adjusting to the new environment. To hit her with SO much news all one time may be just too much information for her to process at once. Once she adjusts, you may need to have a heart-to-heart talk with her to let her know that you can no longer care for her at home due to your age and your own health issues which prevent you from doing so. Let her know she's at the nursing home for her own safety as well, since she's blind and falling so frequently. It's a necessity for BOTH of you at this point in time.

For now, just do whatever it takes to help her adjust.

Wishing you good luck and Godspeed, my friend.