Reply to Message

My mother was living in an assisted living in Alabama.  We didn't see much of each other because I moved to NY.  She called one day and said she didn't want to die alone and could she live with me and my kids.  I thought that I carefully thought about all the pros and cons and made the right choice. We rented a bigger house and my family moved mom in.  The first year was a tough adjustment for everyone and my mom sadly didn't really take on the "grandma" role as I had hoped.  She stayed mostly in her room and didn't really want to do much with us.  She was self sufficient in that she could tend to her personal needs and could handle the basics of getting herself prepared meals and watched tv.  Years before she moved in she stopped communicating with her friends and did very little socializing.  So it didn't surprise me that she wasn't eager to do much.  It disturbed me but it was her choice.  She did what she wanted and she was happy to be with us in her own way.  

She turned 85 this year and we found out she had rectal cancer.  What a scare but she got through the surgery and it had not spread.  She opted for no chemo.  The drs felt that she was not "terminal" even without the chemo.  However, she refused to do anything for herself from that point on.  She just stopped "living".  I know she is depressed even though she says she is happy the way things are.  

The way things are is the scary part.  She says she wants to live but her idea of living is sleeping in the dark no tv no music no nothing for 23 hours a day and that is not an exaggeration.  She will not eat, and no it isn't the cancer.  She will not drink.  She will not sit in a chair to keep up her strength.   Every three weeks we wind up in the hospital and rehab because she becomes dehydrated and gets a UTI.  She absolutely will not do what she needs to to stay healthy but tells everyone she is just fine and doesn't want to die.  She is in no pain.  She has no discomfort to her body... she just exists and she says that is fine with her.  The problem is that my whole household gets disheveled and I have to take time off of work and away from the kids to deal with the hospital/rehab thing.  

There is no dementia we have done all the testing.  There is definitely depression but the medication doesn't seem to be doing anything to encourage her to get up and "live".  She says that she is very happy and that she doesn't see any reason to eat or drink.  She is just fine.  The nurses tell her why she is mistaken.  The drs tell her she should be up and about and enjoying life.  She just won't participate.  She says that she is very happy the way things are and that this is her idea of living.

I know it is her right and her body, but she (and this is where I am so guilt ridden) is really making a mess for me and my children.  I don't mind changing her ostomy bags, her dirty sheets, making meals or caring for her at all BUT I mind that I am doing it because she is CHOOSING not to.  It isn't that she can't it's that she won't.  

I am frustrated because the assisted living she was in was paid for in Alabama by the church and she had a wonderful place.  She can't afford what is here and can't go back there.  I am out of options and really just at my wits end to be okay with just leaving her alone, as she asks me to do.  Hospice is not an option because she is not terminal and has a fully resucitate health care proxy.

I just wonder if anyone has had this issue or similar. How do your cope?  I absolutely could never stop offering her food and drink... I could never just leave her in filthy sheets.  Yet this is what she repeatedly tells me she wants and then tells me "but I won't die".  I don't want to die she says.  I'll be  fine just leave me alone.  It is a frightening place and I feel very much alone and completely responsible to try and get her to stay alive.  I am just a mess.