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?
For now, just do whatever it takes to help her adjust.
Wishing you good luck and Godspeed, my friend.
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.
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.
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.
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.
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.
My heart broke first reading saralee's posting.
Now reading reply is a double on me. So sorry your mother had to go through this, and with your pain. This disease is so unfair. Sending you warm thoughts...
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.
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.
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!)
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...
Hugs 🤗
It upset me to have to "lie" but it is for her best. The kindest thing in the circumstances.
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 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.
You will figure it out. You have received good advice here. Best wishes for and your mom.