Mom does not want to be bathed, have her position changed, diapers changed, refuses food, only takes water for the past week. She wants it to be very quiet and the room to be dark. I want to honor her wishes and have to work myself up to go into her room to clean her because I feel so guilty. She does not complain of any pain or discomfort. I check on her frequently, have a baby monitor incase she calls for help or is in distress. I am used to bathing, changing, providing dental hygiene, caring for her hair, etc. I have to sit on my hands to keep from doing the things that I believe should be done to keep her clean and comfortable, yet what seems to be comfortable for her is to not disturb her. Hospice will be more available to us after the holidays end.....just two more days....Am I a terrible daughter? Is it right to honor her wishes? Does she know what's best for her right now???? I love her so much!

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Thank you all for your comforting answers. After writing my question, I continued to go back and forth about the pros and cons of disturbing my mother again. I braced myself, entered her room, got everything ready and started removing the pillows to change her position and bathe her. At first she was angry and very resistive, almost crying 'why are you doing this to me', why are you tearing me apart? I quietly explained each thing I was going to try to do and by the time I finished changing her diaper, bathing her and moisturizing her skin, she was calm. My son helped me lift her to the top of her bed and we repositioned her. I like to think she was more comfortable (I certainly was). She drank some water, we kissed goodnight, wished each other happy new year and today is a new day. Tomorrow the Hospice Nurse will be here and we will start a new schedule. It's not like I don't have help, we do have caregivers and have had them for the past 4 years...but my brother, son and I have been hands on with the caregivers, doctors, etc. When our mother expresses her wishes for us to leave her alone and not disturb her it is so difficult not to honor that wish. It's hard for me to realize that mom is 90, I am 69, my brother is 63 and son is 50 and we all still feel like little childlren when it comes to this situation. Thank you for your support. We will continue to take one day at a time.....but I don't know if any of us will ever feel confident or grown up.
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(((((hugs))))) you are definitely not a terrible daughter, but a loving. caring one. The others have given you good advice. Breathe deep, try to accept that things are changing, your mother is winding down, and its OK. I know it is hard. More (((((((((hugs))))))))
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My heart goes out to you and you are a wonderful daughter. I agree with above to go by what your mother says she wants. She seems to know what is best at making her more comfortable at this particular stage - honoring her wishes is the best thing to do; I think.

And calling hospice at any time is important as things can change quickly. My mother had hospice this past summer before she passed away and I had to call them when she could no longer speak, but looked in discomfort - the hospice team are so well trained and know just what to do - so important to call them at any time - they are always available.

Hugs across the miles and blessings to you.
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1grdngrl, I've been down your road, though my dad was in a hospice house at this point. Do they have a 24/7 number where you can call them? If they do, I would not hesitate to call them right now. Most have people on staff around the clock.

If that is not the case in your situation, please forgive me. I just so want for you to have help. Minutes seem like hours when we're witnessing the decline of our loved ones. I remember how helpless I felt in my dad's final days sitting alone with him listening to his labored breathing. It's a gut-wrenching, exhausting time and my heart and prayers go out to you.

You are a wonderful daughter who loves her mom greatly. My dad wanted to die alone. My brother wouldn't agree to that and stayed until 3 in the morning until he couldn't stay awake any longer. My dad died 10 minutes after he left.

I know you want to DO something, the things and the care we do day to day. It's a routine and it feels normal because it was and now you are in uncharted territory. It's such a scary place to be, like being on a tightrope without a net.

Respect her wishes for quiet and dark and calm. She knows what she needs right now. Hold her hand if she'll let you and speak softly of your love for her and share good memories of your happy times together.

The hospice people can give you much better advice than I can, but that was what I learned from my experience with my dad. They seem out of it, but the clarity of what they need is there.

God bless you and your mom.
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I'm sorry. I know how hard it is to see your mom this way. My mom is in the last stages of LB dementia. She is only eating enough to take away the hunger pains. She is sleeping all the time. But I am sure your mom is in the stage where her body is in reserve mode. So any kind of movement or disturbance might give her more distress. I would let her have her quiet and dark room...maybe check on her rub her back..or face, make sure she is warm enough or just let her know you are there for her. The comfort kit is a good way to keep her comfortable.
I don't think you are a terrible daughter at all...I can tell you have a heart of gold. I can definitely tell you love her very much. God Bless.
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