My mother is 87 yo / CAD, ten stents, diagnosed w MCI in May. Supportive family. Had a cath done in May-90% complete blockages in three main arteries. Docs say there is nothing more they can do. She’s fatigued, has had several episodes of profuse sweating, chest discomfort , etc. Her short term memory is getting worse. My sister and I wanted to set up a meeting to speak with a Hospice nurse to gain more information on the process of palliative care. I mentioned to my mother we arranged a meeting with hospice and she was livid. She said she didn’t want to have anyone talking about that. She did not want to be a part of that discussion. She felt that we were trying to “plan her death”. I feel horrible that I’ve upset her about this but I know this discussion needs to happen. I’m not sure how to approach this issue.
I guess my questions are - with her current more frequent symptoms , will she have more episodes that are longer in duration? More frequent ? Her heart is slowing down. Do we need to tell her these things? To explain to her why she’s so tired? Etc. I asked her doc that if she keeps having these episodes, do we take her to ER? He said there is no benefit to that. But what do we do? Will these episodes last longer? Or become more frequent?
How do we get her to open up without her feeling we’re forcing end of life thoughts on her?
Any advice would be much appreciated.
Several years ago, when I volunteered for a hospice agency in my area called Community Home Care and Hospice, I had a patient who was 101 and blind, and her family didn't want her to know that she was under hospice care, so when I went to visit her, I just went in her room and told her my name and that I was from Community Home Care, leaving out the hospice part. That seemed to work well in that situation. So I guess the moral of the story is, there are ways around getting mom the help she needs and deserves at this point in her journey. Wishing you and your family only the best.
Yes, not all Hospices are the same but they all bill Medicare and should be abiding by Medicare prodocols. That means that the Nurse orders all supplies for one thing. You should feel comfortable in asking her any questions even if u feel they are stupid.
The best thing...Mom will be kept comfortable and will be pain free.
Time for the family care conference now. But do know, your mother has expressed a feeling she is NOT ready to accept a peaceful exit, and doesn't wish to speak about or have hospice. NO ONE should force another into hospice unless that person is already so incompetent as to not be able to make their own decisions, or so unaware.
It is time to speak with the doctors, the social workers and the family now about what the future will certainly bring, and whomever is POA must feel free to act for Mom's comfort and well being when she is suffering and no longer able to make her own decisions.
This makes everything so much more difficult for your mother. But I will tell you that basically, if she wants to go to the hospital and asks to go, there is little any of you can do about that. It will eventually be taken out of all hands with triage right now, or with your Mom actually becoming ill from going into ER. But no one can withhold choice for ER visit or force Hospice on someone who doesn't wish to have it, and is competent to make decisions about it.
So sorry. I think you fear and know that this means more suffering for your Mom than she wants. She has fought very hard for life. She doesn't wish to go gently into this good night. She's made her decision. We can call it courage; we can call it denial, but ultimately it is her decision.
You might try the tactic of "Hospice isn't what you remember it to be Mom; these days it is about getting more care". But I doubt it will wash, because Mom sounds like a pretty clever bird.
Try telling Mom that as well, and let her know that hospice allows her to have the medical professionals come to her rather than her having to go to them. That's the benefit that finally got my uncle to agree, because just the trips to the hospital or doctor's office were what knocked the stuffing out of him.
There's no requirement to die on a particular timetable with hospice. What it does it filter out all the unnecessary stuff associated with a final illness. It's an enormous load off to know that everything's taken care of in terms of that person's care, and everyone can just relax a bit. The focus goes from constantly trying to save a life to enjoying that life.
Tell her that you have talked with the doctor about treatments that can make her more comfortable. Call it "palliative care" or "comfort care" since there are no other treatments available to reverse her heart problems. Avoid calling it "hospice" because she sees it a "death sentence." In reality hospice is palliative or comfort care since it does not change the disease process and does not "kill" the patient. The goal is to make the client as comfortable as possible so she can her fullest life with her problem.
I would ask the doctor to talk to her about a DNR or "Do Not Resuscitate" order since your mother would not survive a "code" for long but would experience more pain with the possibility of broken ribs on top of painful, tired heart.
One of the primary goals of hospice is to put the power of medical decisions back in the hands of the patient. I can't tell you how empowering it was for my mom, after 2 years of following doctor's orders which quite often just "kicked the problem down the road" so to speak, to be asked by her hospice team "well, what do YOU want to do?" Even simple things -such as, they provided oxygen to the home, but told her it was entirely her choice whether or not to use it and how often. When she complained that having the nasal canula in her nose kept her from sleeping, the LPN told her "well, then don't wear it when you sleep, if you don't want to." For someone like my mom, who was part of that generation that believes the doctor's words are like those of the almighty, it gave her such joy to be the one to call the shots, so to speak.
Unfortunately, your mom's heart condition is not going to get any better, and I think from the questions you're asking you know that she is coming towards the end of her Earthly journey. I'm very sorry, I know how devastating and demoralizing it can be to watch someone you love suffer like she is.
You might want to reach out to hospice, for your own information, and lay this out for them. First, they might have some ideas how to approach mom with starting the discussion. It's also not a bad idea to hear them out as to services they provide, should mom come to the point where she can't make anymore decisions. After talking to them, maybe you might have a better strategy to approach mom about their services.
So many people have the wrong idea about hospice and what their mission is; there are even a good number of doctors (my mom's cardiologist was one of them) who feel as though calling in hospice is akin to "giving up" on the patient, and that is so far from the mission of hospice. I truly hope and pray you can get mom on board with the idea, for both her sake and yours.
Good luck!