I thought it would be clear, as when my dad was diagnosed with cancer. He went from diagnosis to death in six weeks. Hospice was an easy decision as there was nothing to be done for him, and I wanted him comfortable.
Mom is another story, though. She's currently on Day 4 of a hospital stay in a California hospital that's overrun with Covid patients. She had "a touch" of pneumonia (the nurse's words), a 104° fever, shallow, rapid breathing, and a 91 blood oxygen reading. However, she doesn't have Covid -- she has an uncontrolled infection in a wound in her left leg that's been there since September.
I sat in the ER parking lot on Thursday watching a steady stream of ambulances and walk-in patients arrive at this tiny hospital, and I was completely helpless to help my mother who was inside. She was in the ER for 25 hours (no beds to be had), she has dementia, and doesn't know where she is or why. She's terrified, I'm sure, because she's always been in past visits. The nurses tell me she keeps her eyes closed all the time and hasn't spoken to anyone. The nurses are doing a wonderful job, but they're absolutely run off their feet. It takes me two hours on the phone each day to get an update.
She may go home tomorrow to her MC facility. I don't want to put her through this again. Is it time for hospice care? The nurse at MC said she'll continue to be treated for her leg wound there as before even on hospice, so we could go that route if I want. The nurse had told me about five weeks ago that she's declining -- not eating well, refusing medications at times -- and my phone calls with her definitely show her cognizance is declining. However, the eating and meds issues could be attributed to her not feeling great from the seven rounds of antibiotics she's had and her own statement that no one talks to her except to poke at her leg or make her take pills. (The last part isn't true, but she thinks it is.)
The Covid lockdown has been extremely hard on her with no visitors (me). She doesn't understand what Covid is (we just say it's flu season), and she can't understand anyone speaking through a mask. She's very deaf, has bad macular degeneration, CHF, and dementia.
Is it time?
With hospice the life expectancy is 6 months or less, but that doesn't mean that it won't be longer. As long as they meet the criteria (declining or not improving) and the life expectancy is still 6 months or less, she should stay qualified. Hospice is a godsend, which you probably already know from having them with your Dad. It is also an underutilized Medicare benefit, maybe because people feel like it's "giving up" when in reality it's accepting the reality that death is probably going to happen sooner rather than later and welcoming the help hospice provides.
We requested hospice with Daddy when his Parkinson's started getting worse faster. We realized at his 91st birthday that he probably wouldn't make it to his 92nd, but didn't think he would meet the criteria (he probably would have in retrospect) but after a fall (mom has dementia and was unable to realize how much more help he needed and we hated to interfere) my sister and I asked the doctor for it. On the way home from the hospital I asked Daddy if he knew what admission to hospice meant. He didn't so I told him that if he didn't improve, it was possible he wouldn't live more than 6 months. He was quiet but I don't think he was surprised. He wasn't opposed to the idea of having hospice come help.
Mom, like your mom, on the other hand, is not so clear cut. The only ADL she is independent in is feeding herself. She can't bathe herself, dress herself, toilet herself (though she tries), fix herself meals - I don't remember what all of the basic ADLs are. For hospice for dementia, one of the criteria is that they can't communicate coherently, supposedly less than 5 intelligible words at a time.
But I digress. My suggestion would be to ask for a hospice consult. If she meets their criteria for admission, welcome their help!
Hospice is a difficult decision because it means we accept that life is coming to and end, but life is going to come to an end whether we consciously acknowledge it or not. Reaching out and accepting the help that is available isn't giving up, it's giving your Mom the best qualify of life she has for the time she has left.
My heart goes out to you. I can't imagine how difficult it is for you to not be by your Mom's side while she's in the ER. Around here they make exceptions for patients with dementia like they do for dependent children. I don't know what I'd do if they tried to separate us if I had to take Mom to the ER. Prayers for you and your Mom.
This wasn’t true for my DH aunt or for my uncle. They are each able to communicate and each on hospice for dementia. I only point it out as I would hate for some one to read that and think their LO wouldn’t qualify because they are still verbal.
Although I agree that most of their sentences are short snd at the time of interview they may have been very short.
“Hospice is a difficult decision because it means we accept that life is coming to and end, but life is going to come to an end whether we consciously acknowledge it or not.”
This is so true. I was surprised at how sad I felt when my DH aunt went on hospice and knowing what I do about hospice being a blessing. It took a minute.
I would choose hospice for my mom at this point.
To much trauma and pain for her.
May God guide you through this and bless you with strength and wisdom.
Because of hospice, I do not need to take her out to Dr appointments, the nurse checks her every week. I have a team of caring people who check on ME and how I am doing in addition to Mom. She has a "comfort care kit" at the facility with any drugs she might need for pain and will not go to the hospital. They will let me know when she is nearing the end of her life, be with her and me if I can be there, make the final call, notify the mortuary etc. And provide counseling for me and my siblings who live far away for a year. All of this is paid for directly from Medicare, you will never see a bill ( and it is not cheap). You are not signing her death certificate, you are bringing life boats along side of you to support you through what is inevitable, death and the loss of your Mom. Please do not wait, my heart hurts for you, I share your pain.