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lsugrad Asked September 2019

Do I tell my Mother she is never coming home?

My Mother was admitted to a nursing house on Nov 1, 2018. Nine days earlier she had been hospitalized due to a UTI with septicemia. We have lived together for the past 12 yrs. I have been her primary care giver during this time. During the first 2 days she was hospitalized, I got the flu. I was very sick for 3 weeks. During this time, my 3 siblings took control of her care which was not a good thing. Her prognosis when she was discharged from the hospital to the nursing home included her NEVER coming home according to my siblings. My fiancé & I both heard one of my brothers say this in Dec 2018. Despite his statement, I busted my ass trying to get my Mother home. Made myself an emotional, exhausted, overwhelmed mess trying to make sure she was getting proper care, meds, PT, etc. (I’m disabled & have several chronic illnesses.) I have been & am still praying Mom will come home. My question is... Would you tell your Mother she is never coming home?? My siblings use the phrase, “if & when you come home” to give her the impression she will be/is coming home. Mom has been on Medicaid since April. I want what is best for her. To me, telling her this lie is not the right thing to do. I think she should know the truth. What do you think?? Responses are much appreciated!

AnnReid Sep 2019
First, why do you consider this a “lie”, since the word “if” is clearly part of what she is being told. The statement is not telling her a lie. The statement is establishing living parameters that give some room for movement in either direction concerning her future.

Second, shouldn’t her care setting be based on where she’s most comfortable and can receive the best care possible 24/7/365? If it was making you ill to provide for her care singlehandedly why would you want to offer her a situation where your health might worsen because of her?

GingerMay Sep 2019
It seems as though you have a good instinct about what is helpful to your mom so I would say to tell her what you believe is easiest for her. It might not be what you personally feel is right. You do not have to lie. How would it benefit your mom to know the truth? Saying "When the doctor says we can take you home, we will" seems innocent enough. You do not need to inform her if she never asks and you do not need to tell the truth if it might hurt her progress. It seems your mom is still alert and if I were on the receiving end of "you are never leaving here" I think I would personally choose not to know.

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dlpandjep Sep 2019
Bless you for your devotion to your Mother.  Ask yourself whether it will make her happy or hurt her.  I know you don't want to hurt her, so either change the subject or tell her you just can't answer that question.  Set limits for yourself, so you don't burn out and then allow the nursing home to care for her.  Develop a rapport with her caregivers and this will help you feel more confident in them - and it will benefit your Mother as well.

To tell her would rob her of "hope" and that can be devastating.
lsugrad Sep 2019
I don’t want to rob her of hope, her drive to keep trying... I do what I can for my Mother. Always have. My siblings dove in to this situation with Mom & took over her care for one reason only, to protect their inheritance. My brother with Power of Attorney actually told me this. I’m appalled by their behavior! Mom is on Medicaid. There won’t be any inheritance. Don’t know where they come up with that notion. I catch a lot of flack from Mom. I’m the only one living in the home. She’s trying to micromanage me, the home & yard. If I move any of my belongings, furniture, nick naks , etc from her floor to mine or out of the home I catch hell. Mom is still sharp! I’m engaged & making wedding plans. It just seems like my life would be much easier without fearing her backlash, anger or resentment. I realize she has is the important one in this scenario, not me. Thank you for your reply.
againx100 Sep 2019
Just give a vague answer. "We'll see mom." Don't make any promises, don't try to get her home (you have too much going on!) and try to divert the conversation to some other topic.
lsugrad Sep 2019
Mom doesn’t ask me if she’s going home. My siblings tell her the “if & when you come home”. Since my siblings took over, her medical care has gone down the toilet. As hard as I try, it’s near impossible to get any info on her care. I asked her last year if she would let me be in charge of her medical care. I have a medical background. I have been my own advocate for years. I’m good at it too. She declined my offer saying there were too many chiefs. I’m not emotionally able to handle her home visits when I know she is never coming home. I watched her leave our home in Oct last year. That tore me up. Just can’t watch that over & over.
notrydoyoda Sep 2019
It's called a therapeutic fib.

No, I don't think that I would tell her. Has she been diagnosed with dementia?

If the doctor's say a nursing home is where she needs to be, then that's where she needs to be. It sounds like you have enough health challenges of your own.
AlvaDeer Sep 2019
I absolutely agree. It honestly doesn't matter, if there is a good deal of dementia, WHAT you say. It won't go in, won't be absorbed or remembered and the question will be asked again and again. So you can say any number of "Therapeutic lies", that she isn't well enough yet to come home, which is the truth. That she isn't strong enough to come home yet, which is the truth. That YOU are not well enough to care for her as yet. Which is the truth. Try to come to peace with this. Not everything about the end of life can be made right and perfect. When you think about it, is that not the story with ALL of life, ALL the time. We feel dreadful when we are unable to care for our children perfectly. We feel dreadful when we are unable to care for our elders perfectly. But life is imperfect and messy and we do the best we can with what we have to work with. Wishing you peace, and health.

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