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. :/
I wish you courage and strength during this difficult time.
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.
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.
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.
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.
they classified him as end of life
I insisted they release him- I was taking him home and to do his procedure
they did
now medical can’t believe my dad risen from the dead - honestly with us eating and drinking and strong
medical are trying to speed up the process - you feed your mother
and insist she gets water offered regularly
most problems relate to dehydration
you do what feels right for you
we would go into the hospital
To find dad not fed or given water
forget about being overly accommodating - your mother to them bis a number
for you - it’s a number that counts - best wishes
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.
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.
Yes, typically a person is admitted onto Hospice if the doctor thinks they have 6 months or fewer if the course of the disease continues.
But you can be on Hospice longer. There is a "recertification" that is done. That is required and tells Medicare that there is a decline and no improvement.
My Husband was on Hospice for almost 3 years. I know others that were on longer.
there is sometimes and "improvement" when someone is first admitted onto Hospice and this can be because of increased care that Hospice provides.
Express your concerns and feelings to the Hospice Nurse, CNA and Social Worker so they know how you are feeling.
As to the people asking how she is doing....your response can be as informative as you want it to be. Any thing from "about the same" or "she has good days and bad ones" or "not so good today"
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.
If it were my mom, I would think of how she feels ... how she'd want to be 'now' - how much pain she's in? the quality of her life.
I wouldn't try to feed her as I wouldn't see any point to it. If my intention(s) were to prolong her life.
I would be as PRESENT in the moment(s) as I could be ... reflecting on how she was over your life... how she loved and supported her ... the special times you had together. I would hold her hand ... give her a head massage ... hand massage ... and simply 'be with her.' That, to me, would be much more important and valuable in the moment than feeding her. It is an 'energy' focus ... of showing your love for her.
And, understandably this is a confusing time for you.
Let that be okay and flow with however you feel ... your feelings could be changing moment by moment.
Here is a hug. You will do what feels right for you.
Gena / Touch Matters
Hospice does not have the goal of "curing" disease, but the goal has become "maximum quality of life." As such, everybody should work towards making sure mom is comfortable: pain medication as needed (nobody should live in constant pain), antianxiety medication as needed (nobody should live in constant fear), positioning, feeding, toileting, entertainment... It is not about "giving up on her" but about giving her the quality experience in the life she has left. So feeding her is helping her - when she needs assistance for this task. Honoring her wishes not to eat - when she refuses food - is helping her. Letting her sleep is helping her - when she has diminished endurance. The other factor is giving mom enjoyable moments: visits from loved ones, shared moments that create memories within her limitations (please play card games, watch movies with me...), surprising her with small things she enjoys (favorite flowers, beverage, dessert, play music she loves, movie she enjoyed) and revisit old memories (drag out the photo albums and reminisce). Don't get hung up on if she doesn't remember something "correctly", but allow her to enjoy experiences.
In your case, it might be helpful to understand the 5 stages of loss that most people go through for every significant loss or death.
Stage 1 - Denial - the feeling that this isn't real.
Stage 2 - Anger - the feeling that this shouldn't be happening or that this_____ is unfair.
Stage 3 - Bargaining - the feeling that if I do ______ things will go back to "normal."
Stage 4 - Depression - the feeling of sadness when realize that this is the way life is going to be... and missing_____ a lot.
Stage 5 - Acceptance - finding peace after the loss and finding ways to acknowledge the loss without sadness.
You can probably peg which stage you are in. Give yourself grace, knowing that these stages are a process and there is place of peace at the end. You may benefit from meeting with a counsellor, one-on-one. Or, you can find grief support groups like Griefshare or one specific for caregivers of those with your mom's disease. It helps to have somebody there for you as you navigate this process.
I'm in the same situation as you...my mom (88) has metastatic breast cancer that has spread to her lungs. She's been having more and more difficulty resting (up constantly coughing) over the past week, and now she pretty much wants to sleep all day.
I've transitioned from "clean up her house and get rid of things" because she's a hoarder (when I was believing she would get better and was just manipulating me due to our history [prior to her breathing difficulty]), to the present: "don't get rid of anything now until she's gone, as it wouldn't be morally right", as I now believe she is dieing, so I'm doing what I can to help her as much as I can.
I hope that last paragraph made sense...
A sad reference would be the "humorous" gravestone "I told you I was sick!". I didn't really believe, or take it all in until this past week.
This thread has really hit home for me...I appreciate your starting it.