Follow
Share

My LO was admitted to long term nursing home last week. She has Lewy Bodies Dementia and is still very high functioning mentally, even though she's had this for several years. She has been effected physically as she falls approx. 4 times per week and is blind. I'm being told to tell her what's happening as well as to lie and say she'll go home soon. She is crying constantly to go home and believes them when they tell her she's going home. I am 70 years old and can no longer care for her. I'm confused and don't know what I should do? Lie or truth?

Find Care & Housing
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.
Helpful Answer (15)
Reply to AnnReid
Report
Saralee1 Oct 15, 2019
Thank you so much for taking the time to respond. This is all so difficult.
(3)
Report
See 1 more reply
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.
Helpful Answer (12)
Reply to AlvaDeer
Report
Saralee1 Oct 15, 2019
O my lord! I can't thank you enough for your response. First of all, you understand the challenges of Lewy Bodies Dementia. That in itself is a nightmare. I'm so sorry about your brother.
(2)
Report
See 1 more reply
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.
Helpful Answer (10)
Reply to Marylepete
Report

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
Helpful Answer (8)
Reply to SofiaAmirpoor
Report

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.
Helpful Answer (8)
Reply to EllensOnly
Report

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.
Helpful Answer (7)
Reply to Grandma1954
Report

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.
Helpful Answer (6)
Reply to DollyMe
Report

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.
Helpful Answer (5)
Reply to lealonnie1
Report
Saralee1 Oct 15, 2019
Yes. This was very helpful. I am spending less time there (3 hours instead of nine) as I am so exhausted. One day at a time.
(5)
Report
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.
Helpful Answer (5)
Reply to JoAnn29
Report
Saralee1 Oct 15, 2019
Thank you so much for taking the time to respond. This has all been so hard.
(2)
Report
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?
Helpful Answer (5)
Reply to Jamesj
Report

See All Answers

Ask a Question

Subscribe to
Our Newsletter