Hello everyone, I’ve been reading all your great questions and answers and hope you can advise. My mother is on dialysis and has high blood pressure plus progressed dementia. She’s 77 yrs old and lives in assisted living. She’s had four falls in the past five weeks. She has rallied more times then I can count. Last Monday she was sent to the hospital for high blood pressure. I found out she had been refusing her medications. Over the course of this week doctors said she needed a nursing home, then on Friday, they said it’s time for hospice. She wasn’t eating or drinking, couldn’t swallow and could hardly talk. I told them no feeding tube (per her directive). Today is Sunday and I’ve been seeing her everyday. The nurse said she’s getting better and took all her meds today by mouth and drank juice. She had a small bite of food. She’s been sleeping all day today. I was finally at peace today knowing her wishes are to not suffer or be revived. I don’t know what to make of this now and the doctor isn’t around. As hospice is about to be set up, is she really getting better or is this the rally before passing? I’m so confused, two days ago she had bad breathing and couldn’t recall words. She refused dialysis and meds, so they told me there’s not much they can do. I’ve put my life on hold for five years now (first few years taking care of her on my own) and was about to move her and I to another state for my job. Then I cancelled our move to make her arrangements. I don’t know what to do. They said she could do hospice or go to skilled nursing. Any advice would be very helpful. I’m an only child and she has no family left. I can’t sleep and feel like a bad daughter as I don’t want her to suffer. My dad suffered for six years before he died, I don’t want to see this happen again. When she wasn’t in the hospital she would be at dialysis or sitting in her chair watching lifetime but not interacting much. It’s not a life. She told me Friday she was ready to go but now that she’s more alert and taking medications I don’t know what to do…
I am/was an only child too and managing my parents' lives for 10.5 years, always second guessing myself the ENTIRE time. It's hard, to say the least, and we never know what the 'right' thing to do is!!!! I say get hospice on board, leave her in Assisted Living WITH hospice who's a second layer of help & support, and let the chips fall where they may. My mother's ALF/MC would NOT ask her to leave no matter HOW much care she needed once hospice was on board; most ALFs are like that; so don't move her to a SNF unless you absolutely MUST. That's my advice. Check with the ALF now to see what their policy is.
Take it day by day & try not to overthink anything. God will take your mom when He is ready to do so. She may have a rally or two left in her, however, who knows?
I'm sorry you are going through this with your mother; I know EXACTLY how you feel & how torn you are. It's a horrible feeling, too, although you're doing nothing wrong at all! Truth is, it's a terrible thing to be responsible for someone else 100% b/c it's overwhelming! I made all these decisions for my dad in 2015 and he died under hospice care too, so it turned out to be the right move then, as it was now, for my mother. It's just hard and very draining to go through it. I hope you have a husband or a child who you can lean on for support now.
Best of luck. Sending you a hug & a prayer for peace.
It is so hard to live this way. My father died while she was initially placed in the SNF so I am her POA and do everything. It is an emotional roller coaster and means I have to keep putting my life on hold.
To answer your question, YES, people can get better in hospice care, so much so they no longer need it. I have decided that I can no longer put my life on hold and don't feel guilty if I can't see her every week. When the time comes, it comes.
My mother has a hospice aide that comes in and helps her bathe twice a week. Her hospice nurse is officially with her once a week, but stops in multiple times per week, as she sees other patients at my mom’s Memory Care. These women are ANGELS. They treat my mother like GOLD.
Best wishes to you.
If dialysis is needed truly, then when it is removed your Mother will fade gently with the help of dialysis, and she will pass.
She still can take most of her medications.
She is ready to go. You have discussed hospice.
Hospice is not there to kill your mother. Many patients get better in dialysis because it is a tremendous relief to them to know they are going now to do, with support and care for their symptoms, and have peace at last. Knowing that makes them better. The improvement is either longer or not, dependent on how much support they require merely to live. Dialysis is one of the "big" supports.
My advice as an RN? Your Mom is ready for peace. You had acceptance. Please don't second guess. Some patients live beyond the 6 months predicted. I know that you know that is likely not the case for your Mom without dialysis. Most patients pass quickly and gently; my own Mom was gone in two weeks.
I wish you and your Mom peace, acceptance. I am 80, and I have seen a lot. I understand fully that this is our final destination (and I often think, our final "adventure"). My heart goes out to you both.
Providing comfort, not care, is often the best, and usually the only thing, we can do. It's hard and it hurts.
I hope you can gather some peace from her saying she's ready. Take that as you've done your best and she's taken it out of your hands. It's what she wants.
Peace and love be with you both.
We’re all in similar boats. One day’s smooth sailing and the next we’re navigating stormy seas. We’re doing our best but are not in control.
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