Caregiver thinks hospice is suicide, what do I say?
How do you respond when a loved one is dying and their primary caregiver consistently makes comments saying he is going to keep her alive and that hospice is suicide? Backstory-my MIL is at the end of a short battle with pulmonary fibrosis and has been on hospice since the first week of March. Her boyfriend of 20+ years is the primary caregiver (he has no POA or legal rights) and has been through this with his first wife. She was terminally ill and he says she died of suicide, that she wanted to stop taking her meds so he complied and stopped giving them to her and she died. He has said that hospice is here to speed up the process. We seem to have taken a few steps back because a few weeks into it, he had a change of heart and acknowledged that the comfort pack isn’t to kill her and that low doses of morphine and Ativan will help her anxiety and breathing. He seems to have changed his mind again.He admitted to me very recently that at first he wasn’t receptive to them and didn’t want them here. Obviously he had no say in that matter. Anyway we knew a nurse had come over yesterday afternoon (MIL asked us not to come over because of the nurses visit) so today when we stopped by, I asked her partner what the nurse said and he said “you don’t want to know. It was bad”. He further stated that the nurse told him not to give her food if she’s not hungry and he apparently got in her face because he thinks it’s suicide! He is adamant that he will keep MIL alive as long possible. Now due to her illness, food can be dangerous and she has had some bad choking episodes when trying to eat solid food. Her digestive system, from what I can tell, started shutting down about a month ago.(brown urine, decreased urine output, bowel movements every 2-3 days. No appetite). Anyway he was going on about how not giving her food is “suicide” and that he won’t do it. He said they gave her a suppository and that having a bowel movement is very difficult and her oxygen level drops down in to the 50s and she struggled to get it back up. He was quite upset over the nurses comment. I am thinking I should have stayed silent and let him go on but I said “well food isn’t going to keep her alive” and he acknowledged that I was correct and he said that the oxygen machine is what is keeping her alive. And he again started talking about doing whatever it takes to keep her alive, that he won’t medicate her. he also said he is struggling mentally because he never knows if she’s going to be alive when he wakes up in the morning! I feel rather guilty for saying that food isn’t going to keep her alive but at the same time, I know my MIL is suffering and I know what her medical POA states and she wants to go peacefully, she does not want us to prolong life. My own mother is very sick, has COPD and we have discussed her wishes and they are the same as MILs. So it is very hard to watch my MIL clearly suffering, when her partner made his comments today about not letting her die, I wanted to say “really? You want to keep her alive? What kind of life is this? You really want to let her suffer because you think anything else is suicide”? Believe me I know better than to say those kind of things out loud! But basically as she continues to decline, it just gets harder and harder to listen to him go on and on. I don’t know if I should keep my moth shut and just nod my head or gently remind him that her wishes are not to be kept alive? I am so conflicted because I have to think about my own emotional well being, as well as my husband and children who are all watching her slowly die! Seems like somebody has to be the voice of reason here but I don’t think it should be me?
Is there any chance of moving her to a hospice facility or someplace where she can have round the clock professional care?
Try telling the boyfriend that any food or water that goes into Mom-in-law's stomach will be very painful for her because her stomach is starting to shut down.... and her kidneys will be very painful holding water. Of course, no matter what anyone says, boyfriend will consider it nonsense, and that he knows better.
This is just the normal pattern of death via an illness. Oh if only you could find someone that boyfriend who would actually listen to. Does he have any siblings, is he a member of a church where someone there would reason with him?
I agree with Barb's posting above, any chance of moving Mom-in-law to a Hospice facility or a nursing home. That way Mom-in-law can get the required care, and boyfriend will have limited visiting hours.
Definitely talk to the hospice social worker. They see this EVERY DAY, especially from family members who have been absent through all the care giving and decisions, but want to swoop in at the eleventh hour, put in a feeding tube and keep Grandma alive for a few more days for the family members who are now feeling guilt.
You don't extend someone's suffering because you don't want to face your own grief and sadness. It is horrible and I feel badly for him, but I feel so much worse for her not getting the comfort meds she needs. Perhaps if someone could lure him away from the gate keeping and give her the morphine and ativan and let him see her resting peacefully. Hospice does nothing to slow down death's approach, but they don't speed it up either. It is all about comfort.
This man has absolutely no grounds to be considering something like that. And if I understand correctly, he doesn't even have any legal grounds to be mis"handling" her care. From your description, I think she's close to the end now and legal proceedings might only upset her, but I wish I could think of a way to get the BF out of the picture - legally he has absolutely no rights to be controlling her and at this point is only prolonging the torture of dying.
I definitely would raise this with the hospice team, especially a social worker. They may have some ideas on how to control this meddler.
I suppose you could try to get a PPO restraining him from interfering with her care, and getting him out of house. Do you have any legal authority to do that? You could ask the police about this as well. Maybe they have some ideas to get him to stop manipulating and insisting that he's making the decisions.
You're right that she shouldn't be trying to eat; it only contributes to vulnerability for aspiration pneumonia.
Also, is there a trusted friend or religious advisor who might be able to talk to him about any of this to help him come to grips with his inability to let go?
There have been some poignant discussions by others here just recently of the post-death self-questioning, recriminations and concern that they didn't make the right choices and could or should have handled their loved one's last days differently.
I'm still going through this and probably will be for months. And I suspect you will be faced with the same questions...Did you handle the situation as best as it could be handled, for the benefit of your MIL? Should you have intervened? Should you have taken other action?
Believe me, now is the time to act if you feel you need to. The meddling BF is not grounded in reality and is acting on his own emotions and uneducated opinions.
Could your husband have a man-to-man talk with him? If not, perhaps your husband can get him out of the house and just give your MIL some peace.
I do think that's he's not able to cope with losing a second love of his life and that may be why he's SO insistent on doing things his way, as if he has the power to prolong a life that is medically nearing the end.
Perhaps your husband can have a man-to-man talk with him and explain that his actions are making it more difficult for your MIL and that he needs to step back and let nature take its course.
What an incredibly difficult situation. I do sympathize with your MIL's partner. I know its hard to let to go. I had my head in the sand too and wanted to do everything and anything to keep my dad going. It is a struggle in so many families.
XenaJada, thank you for sharing your perspective. It is so true. I never wanted to face my own grief and sadness. I wanted to keep it bay for as long as possible. But you said its best, it is about comfort and quality of life. So hard finding he right balance sometimes.
Also, the 14 liter flow of oxygen - I can't remember right now but perhaps can find my notes on what the DON at the SNF told me about high liter flow and how it compromised another aspect of vital functions. I had asked b/c my father came from the hospital very quickly after his liter flow was weaned down from 11 to 6. And I asked if the SNF staff could turn it up to ease the challenge of breathing after being on 11 liters for about a week.
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