What do I say???(1)

Tross760

I had to run out to take some rx's to my dad. While I was gone, my mom asked husband if she was dying and saying she didn't want to die. (she is on hospice) 

How do I even begin on answering this? What do you say if she asks again? I am so heartbroken

Suzzin

Without knowing more about your mom's condition, I think you just give her a hug and say you love her. Can you joke a bit? Say "Not tonight, mom!" or "I hope not!". These talks are so hard under any circumstances, but if she has Alzheimer's then she may not be able to process or remember it. I'm so sorry.

Tross760

Thank you Suzzin. She is 70, Mixed dementia and has progressed from totally functional and undiagnosed in October, to completely bedridden, incontinent, not eating much etc. since 10/15/20.  

She has a tendency not to find things funny anymore sadly, but this is a good place to start and say something along the lines of not at this moment and perhaps move into some conversations that are more comforting for her??

star26

I'm wondering if you have seen any improvement in her condition at all? Has she been forming sentences and communicating decently all along or is this an improvement or a rare occurrence? Do you feel comfortable with the new meds you are giving her and how she reacts to them? I'm just asking because I've been following your posts including that you seemed to have feelings around "This downturn doesn't seem right and I'm not sure about the hospice recommendation." As people pointed out, quick downturns can happen and sometimes we may think our LO is better off than they are, but sometimes our gut feelings and uncertainties are right too. We know our LO better than anyone. I guess what I'm asking with all these words is "Do you think your Mom is rebounding somewhat or that she's showing signs she is capable of it?" Is she "coming alive" more, in a good way, when any doses of sedative medications are wearing off?

As far as what to say to her, I would encourage you to be honest and to let her talk about it if this is what she desires. Gauge how much you say and what you say by her level of coherency. I think you can honestly say that you don't know for sure but that everyone is worried because she's not eating and her body has become very weak. And I would talk about what's important - your love for each other etc. or anything you want the other one to know - because whether this is her time or not, it can't hurt to have those conversations. 

I'm really sorry about what you are going through. It's so scary and painful. 

Tross760

Thank you Star. Sadly, she is not rebounding. A lot of my confusion is how quickly this escalated. As I look at the progression in the last week, it is definitely evident that she is deteriorating. I can accept it, I just feel so horrible she is going through this. My mind is trying to understand how just a few months back she was fine and now we are preparing to say goodbye. 

She does have her faith and has said Bible many times, so I read it to her and she seems to feel better after. 

Quilting brings calm

I think this might be a question for one of the hospice personnel.  I’m sure it’s something they have encountered often.  I know you just don’t want your mom to be upset - but maybe there’s something she wants to say or communicate to you at this point  and vice versa.  I don’t know what words you use to allow her to say what she might want to say/ but I bet hospice does.

JudyMorrowMaloney

I just tell my DH that the only one who knows when

We are going to die is God or I say that he isn't going anywhere

Until God says so

SonShine Lady

Coming from the viewpoint and opinion of being a retired Hospice counselor, we never recommend lying to a patient.  That said, there is more than one way to convey this depending on how your mother best processes information (ie. my mother always said, "I'm a big girl; if something is wrong with me, just tell me), your relationship, etc.  Again, this is where I highly recommend contacting the Hospice counselor or social worker on your mother's team.  That is one of the reasons they are there - to help you all walk through this.

Based on your comment about your mother being a person of faith, I would recommend encouraging her through the Bible.  Psalm 23 is a beautiful place to begin and/or ask if she has favorite passages she would like to hear.

Do you have any support for yourself, Tross?  The theme of "Caring for the Caregiver" is so very true.  If  you have friends, family members who are not "in the thick of things" ie. in another state, maybe cousins, etc., faith or social groups - anyplace you can find some times of refreshment for your body and soul is so very important.  Those in my immediate family are all loners including my mother, step-father, biological father, and me.  Step-father, biological father, and I are all only children and do well on our own....until something happens that involve all of us and we don't have the outside support we need.  My step-father immediately became proactive and contacted the Alzheimer phone support line.  He then found a service paid for by Medicare that sent a psychiatric nurse to his home for counseling.  He said that was fantastic help.  I'm on disability due to an anxiety disorder so I did my usual "thing" and slept to forget.  In the process I ran out of my thyroid and anti-anxiety meds and was extremely ill the two months after Mother was admitted to the point of barely being able to get out of bed and two ER visits.  Yeah...don't do that.

Wilted Daughter

If mom is a spiritual person or even if not these scriptures may answer her questions and provide comfort to you all. 

"But of that day and that hour knoweth no man, no, not the angels which we in heaven, neither the son, but the Father." Mark13:32 KJV

A comforting prayer is Psalm 23. "The Lord is my shepherd..."