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My dad is 88 and was recently diagnosed with colon cancer that is partly obstructing his bowel. He lives at home with his wife of 20 years (my stepmom) who is caring for him and whom he trusts implicitly. I am one of three grown children who live far away: he's on the west coast and we kids are scattered around the midwest and east coast. Because of his age and diabetes he is not a candidate for surgery and he doesn't want any treatments. In his words, he wants to stay at home, never see another doctor, and be "left alone." My siblings and I have been out to visit several times since his diagnosis and want to get him on hospice, but my stepmom is against it - for some unknown reason that she won't share. No matter what approach we take in trying to convince her to get hospice started, she rejects it and undermines our efforts, even if it's just us trying to talk to Dad about it and why we think it would help him. She waits until we're not around and then tells him that we are interfering and disrupting her plan. It appears her only plan is to pretend he's not dying, pressure him to eat when it makes him uncomfortable, rub his back when he has pain, and get him transfusions to give him temporary energy. (He has severe anemia that is causing constant fatigue and weakness and he had one transfusion a month ago that helped, so now she thinks that's the answer.) She minimizes and dismisses his symptoms at every opportunity - saying "his pain levels are low." I think he has the beginning stages of dementia and his cognitive abilities are declining, so he trusts her completely to make decisions for him and he just does what she tells him to do. He has nightly pain in his abdomen and back and is not able to sleep. She is treating this with anxiety meds. He gets belly pain after eating so he doesn't want to eat. She is pushing him to eat and giving him laxatives. He believes what she's saying about us kids and because he's not cognitively there he thinks we are threatening his wife so he tells us to leave it alone and stay out of it. It's really hurtful to know that our dad who raised us and has known us our whole lives doesn't believe that we have his best interests at heart. All we want is for him to stay home like he wants and have a medical professional treating his pain and discomfort, and for his wife to get the support she also needs. She has told us she doesn't want our help and she doesn't want us getting involved in his medical care, but we can "visit" him anytime. She won't tell us why she is resistant to hospice. She is a very stubborn and controlling person and twists facts to make her look like the victim and us the villains. While that is hard to deal with, I wouldn't care so much if my dad was getting good care. I don't think she will get him into hospice care until it's her idea and I think that may be a long time away - and my dad will be suffering the whole time. I don't think there is much I can do and I'm really having a hard time with that. Does anybody have suggestions? Thank you for listening.

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Oh, Amy; I feel for you!

(Is it possible that step-mom ALSO has the beginnings of cognitive decline?)

The one thing that I can think of that you can do is consider contacting dad's doctor (who ever is prescribing the anti-anxiety meds) and express your concern that hospice isn't being set up and that you "kids" have all observed dad's pain and stepmom forcing food on him when that might be medically contra-indicated.

((((((hugs))))))))
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She may be deep in denial, and he may have some as well. Many of those who are older think that Hospice means what it once did which is that you DEFINITELY will be dead in 6 months. Many cannot accept thinking about that. Many also believe that it means you will not take treatment for anything.
The best way would be if they agreed to interview someone from Hospice, that person being forwarned that this is likely the case.
Other than that keep being there and keeping an eye on things. You aren't living there. You are in no position to go against the care they are choosing now. So just offer help, check in as often as you can.
Is Stepmom the POA and the one the docs are communicating with? If so, that is unlikely to change. She is his wife. And for quite a number of years. I am POA for my Domestic Partner. He and I are together 34 years. I would very much resent either his kids or mine saying they will now be making decisions when he and I have already appointed one another, spoken to one another, and put our grown (and on social security in one case) kids as secondaries if we cannot serve.
Just be there, and keep checking in. May come a needful time.
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amylew Sep 2020
Thank you for your thoughtful reply. You are right that there isn't much we can do while we live out of state. It's just so hard. I appreciate your input.
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She is in denial.
Also, some people truly believe hospice speeds up a person's death.
She probably holds that belief.
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amylew Sep 2020
Thank you for that insight. I appreciate it!
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Would she accept Palliative Care?
Once she gets a palliative Care Team in and realizes that they are there to help it might be easier for the staff to suggest the transition from Palliative to Hospice just with the idea that she would have more help and will be able to get equipment that will make caring for him easier. The team that she would have would make the transition from Palliative to Hospice seamless.
I understand her resistance, it is difficult to watch someone you love die and by accepting Hospice it means that there is a finite amount of time. Denial, Anger, Bargaining and last Acceptance are all part of the process. Getting Hospice before she is ready to accept is difficult. The fact that the diagnosis is recent makes the timeline for the denial, anger, bargaining compressed.
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I agree with the response to consider palliative care. We did this for my mom, as she considered hospice to mean death. The caregivers for hospice, also provided palliative care, and it was the most humane thing I ever did.
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Many people feel like hospice is giving up. She may also feel that she will have no choice on hospice and people think that hospice is about giving people morphine and letting them die. Ask if she will agree to speak to a hospice representative with no obligation to sign up, to see what help they can offer and their philosophy. Hospice (a good one) is about help and education and quality of life for the patient and caregiver. They provide incontinent supplies, home health aide services, durable medical equipment, and pay for medications related to his hospice diagnosis. Hospice comes in when the prognosis for a “normal course of the illness” is six months or less, but there is no such thing as a “normal course of illness.” She can revoke services at any time and people have been discharged from hospice. She is in charge of his care even on hospice. Some hospice providers have hospice centers for respite and other needs. Some also offer 24 hour nursing care during periods of crisis. I hope I don’t sound like a hospice advertisement! But I was lucky to work for an amazing hospice provider in Florida for many years. I just brought in service for my own mother and It has been a blessing for me to know there is someone keeping her comfortable.
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Instead of saying "hospice," talk about "help." Since dad is going to die and everybody knows it, don't harp on it. Talk with her about asking the doctor to write prescriptions for pain medications and treatments that will make dad more comfortable. She will probably go for this. If she can care for him and take care of their home, she appears to be coping. She may not want strangers coming into their home during a pandemic and sees your suggestions at putting them both more at risk.

In the meantime, keep communication lines open: call him and her several times throughout the week, send letters and treats, and visit when you can. Make the visits more like "mini-vacations" so everybody has something to look forward to... and remember fondly. Create memories to look back on with love,
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I am so sorry. We had a similar situation when my Dad was dying of cancer. While my dear step-mom welcomed all us kids taking care of Dad, she didn't want to call in hospice. She had all her hopes pinned on a miracle. I think she believed that calling in hospice was giving up - both on him and on her faith. We did finally get them in, but he was extremely weak by then and only lived a few weeks after that. My step-mom believed hospice was for the bitter end and there was no convincing her that they can be such a help way before you get that far down the road. When we finally called them, she was very impressed with the chaplain who came out and the help they were able to provide. She couldn't bring herself to read the little blue book they left on what to expect until his last few days. She loved him dearly and just couldn't face losing him. She died of a heart attack 8 months after him. We all said we had seen someone die from a broken heart when she passed. I understand your frustration, but they are from a different time and asking for change when they are under such stress is awful hard for them. Hang in there. Hugs.
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Invisible Sep 2020
I found the brochure they had left us on what to expect when your loved one is dying and wished I knew of it before. I could have been much more helpful to my mother. Instead we kept trying to get her to eat.
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Imho, you could contact your dad's physician. It is possible that your step mother has some cognitive decline as well.
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I really like the Palliative care. It will keep him pain free without the "gasp" Hospice word. I have a friend right now who will accept Palliative care, but not Hospice because she has things she still wants to do. Will she ever do them? No, she is too ill and there is nothing the doctors can do for her. They have told her so.
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sorry your dad is going thru this.  The only thing I can think of is at one time your MIL had someone on hospice and they passed away and she blames them for it instead of understanding they are only there to help the patient feel more comfortable with the time they have left.  Maybe she thinks that IF she takes care of your dad he will get better, she is in denial and it might be hard.  Is there anyway you can talk to her and find out what her actual reasoning is for her not wanting hospice?  Do any of you have POA (even though he is married)?  Maybe you could get some kind of guardianship due to the fact that he is in pain, and she is denying him pain free care with the time he has left.  None of us want to see our loved ones pass away but let alone pass while in pain.  Maybe she is afraid to be alone and thinks that if she cares for him and forces him to eat he will be good.  Maybe someone can suggest that hospice can also help in getting her someone to talk to about the situation.  It sounds like the family is between a rock and a hard place with the MIL.  I don't know if the laxatives is a good thing because it could cause him to rupture inside and die from sepsis, does she know that?  maybe explain that especially if he has a partial blockage, that bile will disperse thru his system and it could be extremely painful.  I wish you luck and hope that MIL can come around.
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Many people aren't aware of the services that hospice can provide. They will not take over your home and you don't have to move into a hospice facility. Sometimes people think having hospice is an admittance that your loved one is dying. I would ask your stepmother to at least be willing to meet with a hospice representative and then decide. See if you can get some recommendations for her to make the process easier.
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