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.
Do you have your mother's formal authorisation to share her medical information?
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.
Regardless, she's made her wishes known and I think you should respect them.
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.
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.
Heart failure is dreadful to deal with when it hits the left heart and there is the constant filling of the lungs with fluids, constant air hunger and fear. Imagine a lifetime of constantly drowning slowly.
Please honor your Mom's wishes. If she wishes to awaken, eat, and fight she will do so. If she wishes to be allowed to die, she will do that. Just honor her wishes. That is what you are there for. You will mourn her. Your son, much less so. The passing of grandparents is easier on grandchildren than on children, as you will know. You will tell him about your Mom and that alone will keep her alive. Celebrate her life and your love for her.
Do know that as a nurse one of the hardest things I had to witness was that, when someone determines to die, or does die, they do "turn their faces to the wall" (an ancient expression). They do disengage from even those they love very much, and they are on another journey you cannot understand until you make it.
My heart out to you. Celebrate your love and her life. I am so happy you are providing this rest and peace. I am so relieved Hospice is there to provide her comfort.
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.