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.
Also, some people truly believe hospice speeds up a person's death.
She probably holds that belief.
(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))))))))
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.
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.
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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