Family disharmony

[Tybee]

This is a question about disharmony within a family of adult siblings who are dealing with end stages of life with both parents.
The facility my folks are in reached out to me this week to recommend my dad enter hospice, as he now his prostate cancer has returned with mets to the spine. He has gone on new medication and appears to be tolerating it.
Siblings do not agree about hospice. I am only one who wants it, and I want it badly. Sibling who is in charge of his health proxy does not think "it's time." Sibling who is actually there taking him to doctors says he cannot have it because he won't be able to get treatment. I told facility that family would not agree and dad wanted to fight but that with the spinal mets, what used to be considered curative treatment might be reclassified as palliative quality of life issues due to issues like incontinence and potential loss of ability to walk.
Siblings are angry this was suggested, angry that facility talked to me about it, and not going to agree to anything. Meanwhile, facility now shut down again to indoor visits and only him going on hospice would allow us to visit.

I am really upset and feel angry and shut out of decision making. I also feel very worried about my dad as facility feels strongly he needs hospice. Siblings have decided he doesn't.

Any good ideas on how to handle this?

[Tybee]

Should add that I am being made to feel like Fredo in this, although maybe that's just me. . .

[iris lilies]

What is your father’s idea and wish in this?

To me when the pros recommend hospice I would be taking that advice. It astonishes me when people want to flog a dying old person with intrusive treatment.

but that is my point of view, and they have their own point of view about eeking out every bit of life that they can. Both points of view are reasonable I guess.

I think that’s what you, Tybee, have to understand, that there are reasonable people who take the point of view of your siblings. The fact that you have contentious relations with them colors your acceptance of their decision.

I’m grateful that all siblings were in agreement for all four of our parents. No one was standing and screaming for ridiculously intrusive treatments.

Why is the nursing home calling you? If you aren’t the one on site taking care of the parent, or the medical POA, why do you get the calls? Are they talking to multiple children of your father?

[Teacher Terry]

Thankfully my mom was competent to make her own end of life decisions. She had cancer. Is your dad competent?

[Tybee]

He is competent, Terry, and of course he will make the decision. But my brothers are definitely saying hospice means he only has 6 months to live, and thus he does not want to agree. I don't think they have the right viewpoint of what hospice is and does. I was told he qualifies for it now, and if he gets better, he can go off it, and back on it later if need be.

[Tybee]

IL, I actually do have medical POA but am after them in order.

[iris lilies]

He is competent, Terry, and of course he will make the decision. But my brothers are definitely saying hospice means he only has 6 months to live, and thus he does not want to agree. I don't think they have the right viewpoint of what hospice is and does. I was told he qualifies for it now, and if he gets better, he can go off it, and back on it later if need be.

You father does not want to agree. To me, that is the decision you need to accept.

[Tybee]

My father has only heard from one brother, who told him he did not want him on it. He has not heard from the facility about it. He is not really reaching an informed and free decision.
And of course he can do whatever he wants.
I think the facility feels that he may be approaching the point where he is not competent to make the decision. That was what she implied when she called me. She wanted family to make decision for him.

[Teacher Terry]

Talk to your dad about why hospice is a good idea. Most people go on it to late. I would explain that many people live longer than 6 months on it and it’s only a general guideline.

[Tybee]

Thanks, Terry, I will do that.

[iris lilies]

My father has only heard from one brother, who told him he did not want him on it. He has not heard from the facility about it. He is not really reaching an informed and free decision.
And of course he can do whatever he wants.
I think the facility feels that he may be approaching the point where he is not competent to make the decision. That was what she implied when she called me. She wanted family to make decision for him.

Ok, but you aren’t the active POA now, If I understand this correctly.

But certainly you can talk to your father and give your own input. You can only do what you can do. You can’t control what other people do. You know, that desiderata thing.

To assuage your conscious you do need to make sure you’ve made an effort to let your father know your thoughts about it. You cannot make him do anything. And yes, it is a tricky business when he’s approaching the point of not being competent for his own affairs.

[Tybee]

Thanks, IL, for weighing in with your opinions on this.
Not sure what I am looking for here, maybe someone who has been through this and navigated it successfully.
Thanks.

[iris lilies]

Thanks, IL, for weighing in with your opinions on this.
Not sure what I am looking for here, maybe someone who has been through this and navigated it successfully.
Thanks.
Talking this stuff out even if you already know what the options are can really be useful.

[Tybee]

Talking this stuff out even if you already know what the options are can really be useful.

You are so right. Last night I dreamed I was with my brother and he was dawdling all over the place--we were on a journey to help my dad at the doctors--and he was stopping to cook dinner for himself over an open campfire, and doing everything with this weirdly slow pace, and then he started yelling at me for making us late.

All the different themes come out.

[pinkytoe]

My FIL was probably further along then your father but he ultimately chose hospice on his own. I don't recall any squabbles about the decision but his wife was POA at the time. He was just tired of fighting his mystery illness and meds/procedures were no longer helping. He was gone in about a week quietly slipping away hour by hour. I suppose making that call on your own feels like giving up and some just aren't ready to do that. All I can offer is "this too shall pass."

[Tybee]

My FIL was probably further along then your father but he ultimately chose hospice on his own. I don't recall any squabbles about the decision but his wife was POA at the time. He was just tired of fighting his mystery illness and meds/procedures were no longer helping. He was gone in about a week quietly slipping away hour by hour. I suppose making that call on your own feels like giving up and some just aren't ready to do that. All I can offer is "this too shall pass."

Thanks, Pinkytoe, this makes sense. He sounded so weak today when I called, it's so hard.

[razz]

Decision making by extended family acting independently is very difficult. Some are frightened by the idea of death, some simply cannot face that reality and in denial. A social worker might be able to mediate a discussion to enable your dad to make his decision. Would you be comfortable with stating that it is your dad's decision and aim for a joint consultation to enable that to happen?

[Tybee]

Decision making by extended family acting independently is very difficult. Some are frightened by the idea of death, some simply cannot face that reality and in denial. A social worker might be able to mediate a discussion to enable your dad to make his decision. Would you be comfortable with stating that it is your dad's decision and aim for a joint consultation to enable that to happen?

Yes, and the social worker actually suggested that. He needs to go to another doctor's appoint in 2 weeks that should yield some more info and maybe after that appointment would be a good time to suggest this meeting with the social worker with all parties.

I do think my brothers are resisting the idea that he could be dying, denial comes to mind.

[Tammy]

I’m sorry for all this. It’s so difficult. I like the social workers offer - this is their specialty.

[catherine]

Sometimes I think the resentment from the principle caregivers can spill over and taint reason and relationships with family members. If your main sibling POA has had a major part of the responsibility, he may expressing bitterness--even though you certainly don't deserve it.

I remember shortly before my mother died, I had a nasty conversation with my SIL who, in a very passive-aggressive way, told me she was preparing my mother's funeral. My brother and SIL had the major responsibility of caring for my mother, 69 y.o., who was living in assisted living at the time. They were childless and lived in the same town.

Of course what she said was upsetting to me. My mother had been in the hospital, and they had never even told me. So i told her, in no uncertain terms to make sure she keeps me in the loop from that point on, and then SIL chewed me out more before hanging up. .

My DH had planned a 20th anniversary weekend in upstate New York, which was a couple of weeks after that phone call. We checked into the bed and breakfast, and then travelled to VT to see my son. On the way back to the B&B, I stopped at a rest stop to call home to see how the kids were (there were no cell phones then), and my son told me to call my brother right away.

A piece of me almost didn't call then. I considered waiting until morning. Here I was on my wedding anniversary weekend, and after the call with my SIL, I thought that maybe now they were going to call me for every little hangnail. But when I called, he told me that he didn't think she'd make it through the night, and that they were waiting for me to come to the hospital to speak with her before they gave her morphine.

We drove the two hours to the hospital, and my mother was dying. But the bad feelings between me and my SIL had almost sabotaged the last chance I would have had to see my mother. And even sitting at my mother's deathbed, I felt my SILs condescension.

So I know how tense family emotions can get at this very difficult time for you all. I'm very sorry, Tybee--I think you've received good advice to listen to your dad and to get someone who can mediate between the siblings.

[razz]

Tybee, just a quick addition to the discussion. As hard as it may be to do, don't take any of the disharmony personally.

Our society's death practices have separated us from the death experience so most of us are only learning as we go through it for the first time and each passing is different for each member of the family

[iris lilies]

catherine, I agree with you that there is always resentment from the principal caregivers. I see it every time and in every situation. And who can blame them? But fortunately, there are degrees of it,and in my family it was minimal. My brother was very very very good about not playing martyr when he and his wife looked after my mother. I was very very very good about being loudly enthusiastic about every decision they made. Because truly I didn’t care as I didn’t want to make the decisions.

Sure I think that some things they did were a little bit silly but in no case did that hurt my mother. So it didn’t matter.

[Tybee]

I’m sorry for all this. It’s so difficult. I like the social workers offer - this is their specialty.

I agree, they know what they are doing, and know when hospice makes sense.

[Tybee]

Catherine, thanks, that's a sad story, and I get what you mean about the bad feeling between you and SIL sabotaging your chance to see your mom. There is some of that happening here, I think.

[Simplemind]

One thing that I was thankful for was that when my parents drew up their trust and medical POA they were crystal clear about what they would want. We knew mom was slipping a bit but neither of them felt the end was going to come with them not being competent. It did, for both.
Mom was still at home when we put her on hospice. My dad and my brother didn't want it, my sister and I were all for it. I think a lot of people think of hospice as a quick death sentence and unfortunately it often rolls out that way because people - the ones not needing it - are afraid. It doesn't hasten or delay what is already happening. It can assist the family in a great many ways. It was a great education for me and actually led to some of the volunteer work I do now. I was able to prepare for what we could expect my mom to transition through. I was able to assist with meds. We were able to take breaks when they came to assist as mom could do less and less for herself. She was actually kinder to the hospice people than she was with us...... (no great surprise there). I learned a lot about anticipatory grief and how that was playing out between my dad, brother and sister. A lot of times grief looks like anger, like anxiety, like fear. It brought out the best of us, it brought out the worst of us. Something happened to the dynamic of our family during that hospice time and I'm glad they were there to guide us through it. My dad and brother didn't want my mom to have morphine at the end because they wanted her conversational. My sister and I wanted her to have it because she was in pain and gasping for breath. We gave it to her even though it angered them. I've made it clear should I ever be in a similar situation - give me the damn morphine. We've had years to talk! Anyway.... I have nothing but positive things to say about how they helped us through a horrible time.
With my dad, he was at the hospital and there wasn't anything more that they could do. This was a couple of years ago during the flu season and that is why he was in. They discussed sending him home with hospice but I knew that transition was going to be problematic and very very short anyway. I had a heart to heart with the doctor and said that I watched my mom die gasping for breath and now I was reliving it with my dad. I could tell he was in a panic and was fighting against the suctioning they were having to do. He had dementia and was tied down to the bed. I knew my dad, I knew what he wanted from when he was competent. I told her I wanted her to ease his anxiety, that I didn't want to have him released to home. She explained that if she did he would go quickly do to his lung issues. I let my siblings know. He was gone within 6 hours but he was peaceful and no longer needed to be tied down. We all got to talk to him and say goodbye. I know in my heart that was the right thing to do, just as I know without a doubt hospice was the right call for my mom.
We also had a great doctor for my dad that allowed us all to come to one of his last appointments to talk about where things were headed and options for dad. He would not have this meeting without my dad present (kudos there) but we all got to ask questions and got the info all at the same time to make the hard decisions we knew we needed to make. Part of that was knowing that none of us were set up to adequately take care of him at our homes. It took a huge weight off my shoulders to grasp that loving my dad and wanting him to have the best care did not mean that if I loved him I wouldn't turn over his care to others. I learned that loving him meant that I provided the best care and that the best care was going to come from a professional. I was able to spend our last days together just being his daughter, not his primary caregiver. It saved my sanity. It also saved our sibling relationships which are now stronger than they ever were when our parents were alive.
Long story short.... have a family meeting with his doctor for guidance on hospice. Have a family meeting with the social worker for guidance on hospice. It does not mean giving up, it does not mean giving in. It is every possible resource available to you to assist navigating what is expected for you and your loved one on the journey and that journey can take much longer than 6 months. My mom's order was for a year although she didn't make it nearly that long.

[jp1]

Several years ago dear FIL had an undiagnosed illness where he was requiring regular blood transfusions because he wasn't producing red blood cells. After 3 years of this, along with multiple co-morbidities and having spent literally 50% of nights during that time in a hospital or rehab facility he was done. He made the decision to go into hospice care. Two weeks later we went for our final visit. He was home and mostly seemed content with his decision. Friends were coming to visit and say goodbye from near and far. The whole family was there every evening. It was good. At least as good as can be when a very loved family member is about to die. In the middle of the week one of SO's sisters, when no one else was in the room with him, begged their father to go get another transfusion. He told her no, that he had made his decision. The rest of the family, who agreed with his decision, were very frustrated with this sibling for doing that. She can be 'difficult' to be around sometimes but at the end of the day she's still very much a loved part of the family. Later that evening when SO and I were alone he went off on her for several minutes. After he had vented I let him settle down for a bit and just said "C isn't trying to subvert your dad's wishes just to be contrary. She just loves him very much and doesn't want him to die. Don't be too hard on her."

[razz]

So much good sharing here for all of us to learn.

I have mentioned in earlier posts that my late DH and I had discussed our wishes when near life's end for years. We shared that with our family. It was DH's call when to go to hospital for the final trip. Having acute difficulty breathing, upon arrival, he could only shake or nod his head when asked about resuscitation. The young nurse at the ICU had asked him to confirm his DNR order as soon as he arrived by ambulance. He confirmed it by a vigorous nod and a gasping 'yes'. The MD asked him again when he came in to assess, the nurse was there confirming his nod. I repeated that we had settled this question over years of discussion and also when I called for the ambulance. He needed to be relieved of his acute distress in breathing! At that point, the MD prescribed morphine, DH's breathing stress eased and in 6 hours he was gone. I have no regrets about how it was handled.
From that experience, I have come to believe that professionals will do all they can to prolong life but when they advise hospice, it is because it is the best choice.

[catherine]

...I learned a lot about anticipatory grief and how that was playing out between my dad, brother and sister. A lot of times grief looks like anger, like anxiety, like fear. It brought out the best of us, it brought out the worst of us. Something happened to the dynamic of our family during that hospice time and I'm glad they were there to guide us through it. My dad and brother didn't want my mom to have morphine at the end because they wanted her conversational. My sister and I wanted her to have it because she was in pain and gasping for breath. We gave it to her even though it angered them. I've made it clear should I ever be in a similar situation - give me the damn morphine. We've had years to talk!

I do wish there was a "like" button for our posts sometimes.

[Teacher Terry]

Razz, it sounds like it was handled perfectly.

[Tybee]

Thank you so much for sharing these stories--they are really helping me to think through this situation and my response to it.

[happystuff]

I don't really have anything to add, but wanted to thank everyone for their posts. This thread is making me realize that, even though we have talked about our end of life wishes, dh and I need to put our wants/desires into writing.

[rosarugosa]

Tybee: I'm so sorry for what you are going though and I think there's been a lot of good wisdom shared on this thread. The only thing I can add is that you did not create the situation and there is only so much you can do. I find that I'm sometimes driving myself crazy about something and there's really not much I can do about it, so I need to stop, decide what I can do if anything, do it, and then hope for the best.
I will also add that it was your parents who made the choice to have your brother make their health care decisions, so you cannot reasonably hold yourself accountable for that decision and how it plays out. I think it's interesting that my DMIL made her youngest daughter her health care proxy with her oldest son as backup, but the only ones who go to visit her are my DH and his next older brother. We send her flowers and bring her books, and the two she chose to represent her don't have any contact or do anything for her at all.

[Tybee]

Tybee: I'm so sorry for what you are going though and I think there's been a lot of good wisdom shared on this thread. The only thing I can add is that you did not create the situation and there is only so much you can do. I find that I'm sometimes driving myself crazy about something and there's really not much I can do about it, so I need to stop, decide what I can do if anything, do it, and then hope for the best.
I will also add that it was your parents who made the choice to have your brother make their health care decisions, so you cannot reasonably hold yourself accountable for that decision and how it plays out. I think it's interesting that my DMIL made her youngest daughter her health care proxy with her oldest son as backup, but the only ones who go to visit her are my DH and his next older brother. We send her flowers and bring her books, and the two she chose to represent her don't have any contact or do anything for her at all.

Thanks, Rosa! I just spoke to my sil and actually feel a whole lot better about the situation, hearing about her mom on hospice, and what that meant with respect to her doctors and medication. I know Dad likes his doctors, and would not want to give them up. I think what I came away wishing is that he could have more social support and maybe get on an anti-depressant, so it helped clarify what I think he probably needs right now, and how the family can get together to understand his needs better--like she said, it was a wake up call, and gets us to start the conversation.

That is weird about your mil. Maybe she felt more comfortable with a female child as being health care proxy? My mom did not appoint anyone other than my dad, so that is another kettle of fish. I guess we will cross that suspension bridge when we get to it.

I drive myself crazy worrying too. I know what you mean.