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…
Her former doctor had initiated papers for hospice and DNR notices. She lived for 3 more years without another episode after she quit taking the insulin. Another time she had developed problems with a blood pressure medication. Her final 3 years she spent a lot of time sitting, watching TV, coloring in adult coloring books, putting together jigsaw puzzles and other sedentary amusements. She died of kidney failure a little more than 3 years after the first incident and more than 2 years after the second time she was believed to be dying. Those of us caring for her sometimes wondered whether we should have asked the EMT's for comfort care rather than reviving her.
I wouldn't say that her final years were easy ones for her or for us. Nevertheless, she managed to find pleasure in the pursuits that she could manage. My sisters and I are very happy that her long decline is finally over. In her final year or two she ate less and less that we could see, though she lost little, if any, weight. She may have been sneaking forbidden snacks, or her body may simply not have needed much nutrition to support sitting all day.
Your confusion is something I really relate to. We had no clue what was going on. We pretty much kept resigning ourselves to simply providing company and attention to immediate concerns like food and water. Mom spent most of her time alone with one of us checking in on her for a few hours each day. She refused to relocate to a care facility and was able to make her own decisions, so we could do little more than check in on her. It is a really difficult thing to acknowledge that there is nothing you can do but wait to see what happens, but sometimes that is what there is. Good luck and sympathy to you. I understand and share your frustration and surprise. At least for us there were 4 of us to compare notes and assure each other that we were not crazy, that Mom was simply zigzagging her way to the end of her life. There were often times growing up in a large family that I wished I were an only child, but the final years of my mother's life? Never. Not even once. I hope you can find within yourself the strength and peace you will need to wait this out. It is really hard. You will do it, though, because you have to. Just know that you are not really alone, that many of us have shared this experience. It is just the way it is with your mother. You cannot change it. Hugs.
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.
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.
Some days (or two or three) she wouldn't drink her Ensure at all, then she'd go back to having three a day. She'd randomly decide to eat dinner, then stop eating the next day.
Yes, she was dying, and yes, she belonged on hospice, but dying isn't a nice straight line sloped downward. It takes a circuitous route sometimes, and every time I warned my brother she was on her way out she'd bounce back a bit.
This behavior started on Jan 1 last year, and she didn't die until July 26 -- and she knocked back an Ensure the day before she died.
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.
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.
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.
Otherwise, as lealonnie1 wrote, get that evaluation ASAP.
Also, if your mother is being cared for (not by you) please take some time for yourself and get a good cup of coffee or ice cream, something that you like. Take a break, go for a walk. Turn off the phone for awhile and breathe.
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.