Sometimes I feel confused as to whether I’m giving up on my mom or if I’m prolonging her suffering. I realize this isn’t really a question, lol.
My mom just entered hospice care, we are in week two. Although the neurologist told me she was in the later stages in February, I didn’t realize it was interchangeable with the term "end stages." Since she qualified, I find myself going back and forth between thinking this is the best thing for her and that I’m giving up on her.
She’s sleeping a lot more and not opening her mouth to eat sometimes. The team is helpful but sometimes I feel as if they’re speaking to me like she’s on her way out. Am I doing the wrong thing trying to feed her myself when she’s refusing to eat from her aide? Or if she’s perked up one day am I holding on to hope that she’s really not as bad off? Then I think about how much pain and confusion she must be in and just feel like I don’t know what to do or if there’s anything I can do. Then there’s the people asking how she is doing.
I thank God every night when I pray for her for another day and just pray for her suffering and for his will to be done. My emotions are everywhere. :/
Everything you describe sounds normal. The hospice staff that cared for my husband would refer to this stage as Transitioning.
Your mom's body is shutting down so not eating is not surprising. Nature is smart.
The best you may be able to do is to attempt to offer swabs soaked in water to moisten her mouth. Ask the nurse to show you how. Gently place it near her lips to let her feel the moisture. If she goes for it, she'll suck water from it but may not want more than this.
When people ask how she is thank them for asking. It's difficult to talk about it right now. Or we're doing what we can to help her feel comfortable.
Keep it brief.
You want her out of this state but if you could you'd give anything to give her back her years and good health. It's normal.
You're keeping vigil at the same time you're already grieving. It's all normal.
Big hugs.
But that isn't a bad thing! It's sad, and of course you would like her to live longer (and be healthy). Since this isn't possible, try to readjust your thoughts. You know she feels pain and confusion, and soon her suffering will be over. That is a good thing.
You are not giving up on her. Her body is giving up, her mind is giving up, but you are not. You are still her loving faithful daughter who has a wonderful mother. You'll see her out of this life, and your faith reassures you that God's will is done.
Keep your thinking straight! I hope for a peaceful passing for mom and for strength and understanding for you as you see her through this.
I wish you courage and strength during this difficult time.
If she perks up, that’s great. It means she’s happier, more alert, has less pain, etc. If she wants to eat, that’s also great. As much or as little as she wants of whatever she wants. It’s OK not to eat also. If she wants to listen to music, look at old photos, talk, feel the sun or the breeze, all great! But if all she wants is to rest, that’s totally fine too.
You are not giving up on her. The only thing now is to be with her. Tell her all she means to you. Tell her some of your best memories. Tell her how much you will miss her, never forget her, and she will always be in your heart. Ask her if there is anyone she wants to get in touch with.
Also, tell her it’s Ok, you will take care of anything you think she may worry about. It’s OK for her to let go.
My dad passed a year ago after four months in hospice. I have not regretted giving up the aggressive medical treatments or going for hospice at all. Not one moment.
Mom was with us for 18 months under hospice.
I signed Mom up for hospice when Mom became bedbound and could no longer walk or stand. We aggressively pushed Mom with walking for years. When she could no longer take a step I knew it was time to call in hospice and let Mom rest in bed.
I wonder if there is a new thought, somewhere in the middle? Somewhere between the strong thoughts of “best thing for her” and “that I’m giving up on her”.
Something to head you towards acceptance of what each day, hour, minute brings.
The best thing - will be.. maybe.. as nature (or your faith) has decided…?
You are not giving up - you are accepting what is.
Letting go with love.
I know how hard this is. My MIL stopped eating altogether several days before she passed; it just doesn't seem right to us but it's best for them when their body is shutting down.
When my mum no longer had any quality of life and she didn't want to eat or drink, I stopped trying to (strenuously) encourage her. It wasn't easy - I felt like I was depriving her of what she needed. But, if I had pushed her, I would have simply made her last few weeks more uncomfortable.
The carers, who came in 4 times a day, would say to me that my mum was strong and that she would rally round and get better. That wasn't comforting. I knew Mum was dying and my priority was for her to be comfortable and have peace.
I knew I was doing the right thing and I didn't need anyone suggesting there was another outcome because that would mean my end of life care for Mum was wrong.
If your mum is mostly sleeping and is in the last stages of dementia, or any other fatal disease, then you don't need to do anything to extend life, just to provide comfort and peace.
Don't second guess yourself. You're a caring child and you're doing the right thing to help your mum's ending be as peaceful as possible.