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My mom was diagnosed with MS in 2015 and has a progressive form. She’s had several flair ups which require weeks-months at a physical rehab center. She was rushed to the ER a month ago (Jan 3) with a suspected heart attack. She was intubated in the ER after asking for help to breathe. She told us after having Covid in March and becoming wheelchair-bound that she never wanted to be intubated. We had to fight the doctors and finally took the tube out a week later, but she was able to breathe on her own. We weren’t able to see her in the hospital because of Covid and when we did a video chat she asked us to “please help me”so we asked if she meant getting better or stopping treatment and she asked us to stop. Her heart function was 10-15% but increased to almost 50%. She’s been on hospice for 11 days and on morphine so she is sleeping, but is not showing any signs of deteriorating or dying. She hasn’t had a thing to eat in 10 days. I’m sick over this. I’m 32 with a 2 year old son (he is my mom’s sunshine! She is obsessed with him and I can’t imagine him not growing up knowing her). I just don’t know what to do or think. No one my age knows what I’m going through. I'm starting to feel like we made a mistake stopping treatment bc she is not actively dying now. She won’t really talk to us aside from asking for water or saying she is tired. Any advice or support is appreciated.

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My mom died of CHF, so I understand the roller coaster of emotions you're feeling.

My mom's hospice nurse told me CHF was "tricky" when I asked for signs of the end. It is not unusual for patients to decline to the point where you think "this is it" and then rally to near normalcy. My mom did it many times, over and over again. There were times, like you, that I questioned the need for hospice, because she was doing so well, relatively speaking.

However, unless your mom is a candidate for a transplant, she's never going to get "better", I'm sorry to say. CHF treatments really only treat the symptoms of the disease, not the disease itself. My mom got so tired of the constant trips to the doctor/ER/rehab facilities. Since she knew she was never going to be cured, she felt they were just putting her through hell for no reason other than a few more weeks. "A few more weeks of what?!" she asked me at one point. "Not being able to breathe? Not being able to walk around? Who wants that?" She told me numerous times she was "so tired of being tired all the time."

If your mom has reached that stage, then support her decision for hospice. I know how hard that is, especially because your mom is so relatively young. A week before my mom passed, she went into a huge decline, which left me with no doubt that the end was near. I literally don't know what I would have done if I didn't have them to lean on during my mom's last week. If and when your mom reaches that state, you will be glad for their support.

I am so sorry you have to go through this, and I wish you and mom peace throughout her final journey.
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Daughterof1930 Feb 2021
You mom and my dad truly traveled the same road. CHF is relentless and endlessly cruel. We can be glad they’re both at peace
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Jenny - watching and waiting for someone to pass is a very difficult thing to endure. A couple of months ago, my uncle who was only 63 y,o. was on hospice due to heart failure, kidney failure and liver failure. His organs were shutting down and he was having a hard time breathing. The doctor gave him a week to a month the most. Hospice put him on morphine which eased his breathing but also put him to sleep. He refused both water and food..

About 5 days after he got on hospice, the nurse checked him and said he only had hours left. Well, she was wrong. My uncle didn't die that day. He lasted another week. Out of 3 sisters he had left, two had come to see him, but the 3rd sister hadn't and couldn't because she was disabled and had mobility issues. But my uncle waited and waited until the 3rd sister finally came, and he died 15 minutes later. My uncle lasted 12 days on hospice with no food and no water.

Ask your mother if there's anything that is still unresolved for her. Maybe she wants to hear that you will be ok after she leaves. Maybe she wants to see or hear her grandson, her sunshine one more time.

If possible, search for the book called The Final Gifts written by Maggie Callanan and Patricia Kelly, two hospice nurses, about their experiences with people who are close to death and what they need in order to pass peacefully.

I am sorry you're having to go through this.
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You say that you don't believe that your mom is actively dying, but if she hasn't eaten in 10 days then it certainly sounds like the dying process has started. My husband during his dying process didn't eat for 41 days, and didn't drink for over 25 days. Why is hospice giving your mom morphine? Is she having pain, or trouble breathing? Those should be the only reasons they have her on that. If neither of those apply, then I would not give her any more of the morphine, as that will certainly keep her in a drugged state needlessly. If you are her medical POA, make sure you're asking the right questions, and honoring whatever your mom's wishes are. I'm so sorry you are having to go through this. God bless you.
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I’m sorry for the turmoil and inner conflict you’re experiencing. My dad had congestive heart failure for years, it’s a cruel condition. He often told us that though he had family he loved, it wasn’t enough anymore to make up for the hard life of struggling for breathe. He made the decision to stop treatment that wasn’t working anyway, except on a very short term basis, and have hospice care in home. It was very hard to watch and there were definitely moments of doubt. I’m sure yours are magnified by your mother’s younger age and your child possibly not knowing or remembering her. People do sometimes improve while on hospice and end up being dismissed from their services. More often it’s a decline and eventual loss. Your hospice nurses can be a great help in helping you know what they’re seeing. It’s certainly appropriate to ask them if they see signs that treatment should be resumed. They are overseen by a doctor who can be consulted to give input. You’ll learn whether there’s cause to treat or learn how to better accept loss. It’s gut wrenching either way. My dad was so very tired of it all, if this is where your mother is she’ll need your support in reassuring her that it’s okay. Many times I just told my dad that I understood, even when I didn’t completely or wanted it to be different. I wish you both peace
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My mom has been on hospice since January 3, hasn't eaten anything since December 17, and is still with us. As long as your mom is drinking water at all, she can hang on for a while.
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Don't second guess yourself. This is a horrible, painful situation. Others have been through the same thing and everyone has doubts and regrets. It is a part of life we cannot escape. The only way to avoid loss is to never have anything in the first place.

You can keep your mom's memory alive by sharing things with your son as he is growing up. Maybe you will see some of your mom in him as he grows. Nothing anyone can do can take away your pain, but I hope you are a person of faith so that you can gain comfort from that.

Praying for peace and strength for you in this difficult time.
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Thank you so much for the supportive and understanding message. Reading them helped me center myself more within this chaos. We saw my mom today for the first time in 2 days (huge snow storm in NJ) and she was extremely anxious: she said she was, that she felt like she was going to explode, and that she couldn’t do this anymore. It was heartbreaking but I was somewhat comforted by the fact that I was there to help her and that she was showing emotion about this. My dad and I told her that we would do whatever she wanted: if she wanted us to try to reverse this or help her through it. I think it’s finally settling in for her. She thanked me for taking such good care of her before we left (after she had been given a dose of Ativan). It’s devastating but also in a weird way comforting knowing that she may be declining - meaning this was the right decision for her.
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Who is the decision-maker?

Do you have your mother's formal authorisation to share her medical information?
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Is she being hydrated? People can last a LONG time with no food but on water.

Regardless, she's made her wishes known and I think you should respect them.
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Grandma1954 Feb 2021
Hospice typically will not do an IV to hydrate someone. They will to administer medication if that is necessary.
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ZZ the trouble is that the OP's mother made one set of wishes known last March, and then a completely different wish known last month. Heart-breakingly for the lady herself, for the OP, and for all those involved in managing this terribly difficult situation, a person's wishes can - for very natural and understandable reasons - change dramatically when they are brought face to face with realities. How do you reconcile "I never want to be intubated" and "I can't breathe, help me"?

This places the person's loved ones in an impossible situation, as long as they continue to try to find the "right" answer. The only consolation I can suggest is that they try to accept that there is no right answer, and focus instead on the best that can be done for their mother in the moment.
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ZippyZee Feb 2021
Doesn't it say that last March the mother said she didn't want a feeding tube? Maybe I misread it.
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