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AbbyRose Asked February 2020

Was your LO under palliative care before hospice care while in AL facility?

My Mom was assessed a week ago by a Nurse Practicioner and has been accepted into Palliative Care. She is not Hospice ready. According to the NP, Mom is stage 6c. But the NP did say that Mom will be ready for Hospice care soon, not because she is EOL but because she will benefit from hospice services.


At this point, I will take any and all help, even though Mom is well cared for in her AL facility. As you see from my prior posts, Mom is now attached to a doll. I'm so tired, and God forgive me, I want relief for her from this horrid disease. She will be 85 in March. I see her declining more and more with each visit. She is now starting to lose her words. She tries to tell me something and when she can't complete her thought she says, "I don't know." My heart is past being broken. I want to laugh again. I want to sleep again, and I want to move forward with my life and my husband.


I know that her end will come, and I pray that I have no regrets in wanting peace for her.


Thank you for listening.

NeedHelpWithMom Feb 2020
My mom could receive palliative care and probably should. I was told it was the step before hospice. I no longer care for her so it’s out of my hands.

Mom is now with my brother and sister in law. I was tired like you and cared for mom in my home for 15 years so I did more than my share. I feel palliative care is a good service.

My brother was accepted into hospice and they were very good to him and the family. Not just the medical care but the support from the clergy and the social worker.

I wouldn’t hesitate to use hospice. There are different organizations. I am wondering if you prefer hospice over palliative care if your mom would be accepted into hospice from another organization. Are you open to exploring other hospice organizations?

Please don’t feel guilty about wanting her suffering to end. A lot of caregivers feel that way. I have too. You know what? My mom would often say to me, “Why is God allowing me to live this long? I want to be with your father in heaven.” So, even they are ready to go.

bluefinspirit Feb 2020
"Palliative care refers to an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex illness."

I don't remember my mom needing to be "accepted" into Palliative Care. It just kinda happened, and I can't say enough positive things about our experience with her Palliative Care team.

Once I figured out that I could call them for all sorts of help, I took full advantage (probably more than their average patient's son). They know me now by the sound of my voice, and I no longer have to recite my mom's medical record number at each call. My mom's now in Hospice (which is a totally different set of contacts), but I can still call her Palliative Care team and ask questions. I'm sure they are ready to be rid of me, but they are as helpful and kind as always!

Palliative Care had access to all of my mom's medical records, and could act as sort of a go-between between us (my brother and me) and our mom's various doctors. If I was having trouble getting through to my mom's oncologist with an urgent question, I could call her palliative care nurse and she would call oncology for me. If my mom was having a hard time with BMs, or experiencing pain, or dizziness, or ???, I could call the 24/7 number at palliative care instead of the useless on-call nurse at the standard 800 number.

My mom was at home and not in AL, but I don't see why that would matter. Take the help and make sure the ALF knows how to get in touch with them.
AbbyRose Feb 2020
Thank you for your insight and for sharing your experience with Palliative Care. I hope to have a positive experience as well. I'm in this journey with my mom by myself. All decisions, etc., so I'm still a little unsure of what questions to ask. I'm sure as we go along I'll be better acclimated with their service. The NP that will be overseeing Mom's care and visiting her is super nice and knowledgeable. Again, thank you for taking a moment to share.

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lealonnie1 Feb 2020
When the Catholic deacon came to the Memory Care I work at on Sunday to give out communion, he told me he prays daily for his 90 y/o mother to die. He believes it's a blessing to die and a curse for the diseased and aged to have a further prolonged life. This, coming from a 'man of God'. So please don't say "God forgive me" when you say you want relief from this horrid disease. So does your mom and when she does pass, it's to a place of blessed peace with no pain, no suffering, and no dementia, and most of all, no regrets for ANYONE.

Sending you a big hug.
AbbyRose Feb 2020
Thank you for sharing what I need to hear - that's it okay to want Mom's journey to end. In the beginning of her diagnosis, I was so distraught and in denial. I never thought Mom would succumb to this horrible beast, but the beast within is winning. Thank you for your virtual hug. :)
BarbBrooklyn Feb 2020
Abby ((((((hugs))))))).

My mom was on palliative care in her nursing home for about 3 years. My brother was not ready to do Hospice. We saw that every trip to the ER did more damage than good. We told the NH to trest her in house, and if that didnt work, we would accept that as what fate dictated.

Mom declined slowly. She fell, with an aide present, in the bathroom. We put her on Hospice at that point and she died a few days later.

My dear lady, your mom is being cared for. Take a vacation. It really does help. You will come back better able to cope with this wicked disease.
AbbyRose Feb 2020
Thank you so much for your insight. I absolutely agree with you, regarding ER visits. Mom fell 4 times in a week, 2 within a 24-hour period. The 2nd fall landed us in the ER. The facility wanted to send her to the ER with the 3rd fall, but I said, "NO!" Unless my mom is bleeding from her nose, ears, mouth, or head, I am not putting her through it. The facility can bring in X-Ray equipment to make sure nothing is broken, which is what the ER will do. At this stage, I am opting for comfort care same as you did for your mother. My mom is terminal, and I want her to live her best life for as long as she can outside of the ER. Prolonging the inevitable will only prolong the pain of letting her go. I am finally beginning to accept this truth.

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