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 she at least getting lip moisturizer, non petrolatum based only?
If you do find that information, I would love to hear it but no rush. She is back down to 12 liters of oxygen, I was told this yesterday. MIL's partner/boyfriend says that when its up to 14 liters, it affects the inside of her nose/nasal passage, I forget what exactly he said but I know that she's been having issues with her nose becoming dry and raw inside and she's been using the face mask instead of a nasal canula.
So we did go over yesterday. We now have the hospice nurse is now coming twice a week. The same nurse has not been coming but the woman who came yesterday is closer to MILs age and MIL's partner seems to like her better and is more accepting of her advice. He said when it comes to feeding MIL, he and the nurses have to meet in the middle but then he said "but you know me. i'm still going to feed her". He still says he's going to keep trying to get MIL to eat and he boasted about how she ate a big breakfast yesterday-eggs and potatoes, and drank some coffee. She has for sure lost control of her bladder but not her bowels. I misunderstood what he said about the suppository, the suppository itself didn't cause any problems, its having the bowel movement that causes her oxygen to drop and her temperature to go way up. The way he said it the other day, it sounded like the suppository caused a problem. He also brought up MIL's mothers own passing (from the same thing, IPF) and he said that "they pulled the plug and let her die. I wouldn't have done that, I would have kept her alive". The situation with that was, she was much older than MIL is now and had been bedridden for some time just due to old age and undiagnosed IPF. She went into a nursing home for rehab and was supposed to go home but then she ended up sick in the hospital and they said her lungs were shot and she didn't have much time left. So she went to another nursing home for a few weeks where she steadily declined and then the nurse called one day and said she would probably pass away that day and that the family should come say goodbye. She was already unresponsive/comatose before this. So anyway the family took her off the oxygen and she was allowed to pass peacefully a few hours later. I don't understand why he wouldn't have done the same if it was his mother. I don't think she would have lived even if she was kept on the oxygen but maybe I am wrong. But as far as MIL is concerned, she said she is not yet ready to go, that she doesn't know how she's supposed to go, and what I mean by that is, she feels like she has to keep living because she doesn't know how to go, like she can't just all of a sudden let go and die. She'll let us know when she's had enough and is ready. When it gets to a point where she can't decide for herself, my husband will be the one in control.
MIL's partner also said he doesn't know if he will go to her funerals. He didn't go when her brother and parents passed. He also told my SIL that the funeral is paid for but yesterday, for the 2nd time, he told me has hasn't paid for it yet so there's some funny business going on.
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.
When MIL's parter needs a break, he knows he can call me. I know they don't want a stranger coming in and taking over care but they will allow us kids to come in and help. I thought about respite care, I think it would help if she had someone come over night to calm her and give her ativan because she wakes in a panic. and that way he can sleep in his room and not be started away by her screams. Now I just need to find the strength to sit my husband down and lay all of this on him and tell him he needs to step up! My MIL took a leave of absence last month and thats when things were good. She's back at work now and we've taken 10 steps back it seems! Its my husbands turn to step up.
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.
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.
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.
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?
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.
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.
Is there any chance of moving her to a hospice facility or someplace where she can have round the clock professional care?