My widowed 87-year-old father was stricken with serious pneumonia earlier this year. I traveled 1,500 miles and stayed for a month to see him through hospitalization and rehab. He seemed to recover, yet rather than choosing to continue rehab, he demanded to be released to hospice care. He has long held a desire to choose his time and mode of death through hospice, which admitted him under somewhat false circumstances. He has difficulty swallowing and refused any feeding tube, so he has virtually stopped eating, which does create a terminal condition.. During my recent stay and afterwards by phone, he has been abusive and mean and judgmental of me, the only family member left (there is another daughter lives nearby, but she refuses to be involved). I feel terrorized by his "death drama," scared of being expected to drop my life and be with him whenever he commands and let myself suffer more abuse. I feel guilty for wishing it were over and angry about the abuse I suffered all my life from this sometimes kind but often very mean parent.
I feel so bad for you going through this. It is tortuous, I know. Nobody wants to be in that place and I don't blame you for wanting to avoid the pain. You've already been through so much with your sister and mom. Big hugs to you dear!
It is hard to grasp a parent's age sometimes, isn't it? I'm 52 myself and I can relate. My mom will be 77 this year. Unreal.
Your dad sounds like a good guy, and you pretty much have him figured out. I hope the two of you have some good bonding time when you see him. I think that was the hardest for me when my dad was dying. The brain tumor took away his speech so he couldn't talk with me. Holding hands and eye contact were our ways of communicating.
If your father has ceased to eat anything at all, the window of his survival may be pretty small, a week or two, though it pains me to say that to you. Lean on the hospice staff. They're pretty accurate at pinpointing a timeline from their observations.
Please keep in touch. We're all here if you need us!
I am trying to figure out when I will need to travel so he won't be alone, but (self- preservation here) also want to time it so that I don't have to live down there for months. I'm afraid of the situation altogether. I may have given a skewed impression of my dad as a con man -- he uses the language of "cons" (he likes movies like The Sting, for example), but he was a lawyer and a respected financial professional, exceptionally smart at deal-making. There is (was) a lot of good in him, but he never had a way to deal with his emotions, and could blame others (his children, his wife) when they were hurt by his brusqueness. I'm sure it had to do with his upbringing -- cold, remote parents.
I know none of this is my fault, but it's hard to not feel guilt about wanting to avoid the pain and fast-forward to the day when it's in the past...I felt the same way when my sister was dying, and during my mom's long nightmare of hospitalization and death.
Thank you for the support, jeannegibbs. ((Hugs))
I don't doubt you a bit that this is consistent with the wheeling-dealing-close-to-the-edge characteristic of his business practices. He is a con artist and this may be another con. On the other hand, doctors are pretty hard to con about heart conditions. There are simply too many tests to confirm or contradict a patient's claim. Dad's heart condition has been stable for years. How do you know that it still is now. That is something that changes over time. Unless you have seen test results and talked to his doctor recently, can you be positive that he isn't experiencing life-ending heart conditions?
Here is a possible scenario. Dad is in the final stage of a heart condition. He knows and his doctor knows that he will probably die within a matter of months. But he has always wanted to control when and how he dies so he is conning himself and anyone else he can into believing that is what he is doing. That he is starving himself to death and he is in control. That fits his self-image better than simply admitting that his heart condition has beat him. Maybe he is committing suicide, or maybe that is what he wants you to believe.
Often in hospice the patient is genuinely in the final stage of some fatal condition, such as dementia, COPD, cancer, congestive heart failure, etc. Eating becomes difficult and quite close to the end it becomes unnecessary. The body is shutting down, and eating is just disruptive of the natural processes. Sometimes family members try to encourage eating, but the patient's body tends to know what it needs. These patients are going to die of the underlying condition, whether they eat or not. I have never heard this refusal to eat to be called suicide. I certainly don't think of it that way.
What you think/assume/know about your dad's situation is that it is different than the typical case I just described -- that he does not have some other condition that he is dying from and that not being able to eat is not caused by some other fatal condition. Instead you think the not eating itself is going to cause his death. Maybe. But there is room for doubt. If it makes you feel better about it, accept that his doctor is correct and your father is dying no matter what he does. Refusing to eat may make him feel like he has more control.
Warm hugs to you Miranda.
I know that he feels very alone and unloved, which of course makes me feel incredibly guilty (even though I could never make a difference). He gave up on life after my mom died, rejected and refused any suggestions about things he could do to find some pleasure and purpose in life, and I think he became fixated on the idea of planned suicide after a friend decided to terminate his dialysis and die -- my father talked about this endlessly, what a great thing it was that his friend had that option. Now that I think of it, he thought my mom wanted to die during her illness (long story, won't go into here) -- I was happy when she told me "No way" to hospice. She did NOT have a death wish, but my dad has been obsessed with dying, even when his health was remarkably strong and his mind razor-sharp for a man in his 80s.
I think I understand why he barked at me, "You promised me no nursing home, and where am I now?" when he was in a nursing/rehab facility -- the suicide is, I guess, a way of preventing the loss of control and confinement in a nursing home.
I can't help feeling there is something wrong and destructive about bringing about your own death by starvation. It's really hard to think about, and hard for me to make those phone calls to him and hear how he's wasting away.
With your dad, and in a way, my mom, the physical heart isn't what is causing them to give up so much. It's their spiritual heart. Your comment about being a daughter isn't enough to live for, hit home with me. I feel the same.
Our childhoods are diametrically opposed, which is interesting in the way that we have kind of come to the same place. I was a very emotional child and was told to pull myself up from my bootstraps. When I was close to suicide in college, I got the same advice. They were in denial about my very real feelings. I learned to deal with them all alone. It was a painful process. So I'll swap you a few "therapy cards" for some "bootstrap cards". Not trying to make light of things...but we're both survivors and for that I'm glad as we would not be 'talking' right now!
Don't feel bad about the resentment. We all have it. There's also the guilt about things we could've/should've done in situations. It's what makes us human. Hold onto the precious part and let go of the negativity. Easier said than done, I know. Please keep us updated on how you and your dad are doing. This board saved my sanity when I felt most alone. You'll be okay too. ((Hugs))
I know exactly how you feel about the deep dread of the next phone call. I can't really untangle the hospice issue -- certainly if he is unable(?) to take nourishment, he will not live, but somehow in collaboration with hospice, the orders were written based on the heart condition. I don't really care about the technicalities at this point -- nothing I would do would change it or make him want to live.
But it is confusing in a way that resembles the psychological confusion created in my childhood, where things were not right, but my parents denied there was anything wrong. I was labeled "sick" for reacting to things that they denied existing, and hauled to psychiatrists, medicated, hospitalized. I know there was nothing wrong with me, but my parents believed in the words of so-called medical professionals, as though they were gods. I knew they were wrong.
About living your life differently, I agree that is the gift. I am determined to stay positive in my own life, to give to others and to hold onto what is precious and dear and not succumb to dark negativity as a way of life. Clearly I have a lot of unexpressed resentment about my upbringing.
I'm not doubting YOU in any way, miranda, as I know personally how controlling a negative parent can be. My mom is making my life miserable by refusing medical care for things (skin cancer, heart problems) that could cause her to die I live my life on pins and needles waiting for the next phone call.
It isn't fair and it stinks to torture us this way. It's sad and infuriating all at once. And hurtful in the way that they can't see outside themselves enough to realize how much their willful neglect causes so much stress in our lives. They're narcissists and control freaks right until the minute they die.
If he, like my mom, is rejecting life itself, so be it. I tell myself that I've let go of the guilt and stress. (ha-ha) It's easier said than done because we're essentially cut out of different cloth. That kind of mindset is foreign to us.
That nurse would've ticked me off too, but keep in mind, she is operating under doctor's orders. Your bone to pick is with the doctor ordering hospice. If you have medical POA ask to see the issuing orders regarding prognosis, etc.
It's awful to feel so helpless, especially with you being so far away. Sometimes you just have to give in to acceptance of their choices. It's their life, after all. Try to find the hidden gift it holds and live your own life differently from the lesson this experience holds.
You are not alone on this road, know that. I hope it brings you just a little bit of peace.
This Hospice time could be an opportunity for some reconciliation. It could be a time of better bonding, which would be good for both of you. Keep yourself open to that opportunity and if it sounds possible it would be worthwhile (in my opinion) to go to him one more time. But getting abuse from his deathbed would not be good for you or for him. It would be good if you can make connections with his main hospice nurse and the hospice social worker, explain the sad dynamics of your relationship, and let them keep you informed of his condition and frame of mind.
You may be "expected" by your father to drop everything and make command appearances. You cannot control what he expects. But you can control your responses. You don't have to be at his beck and call. Really. Work with the hospice folks. They are there for family as well as for the patient.
I am not in favor of suicide, but suicide is a different thing than letting Nature take its course. If your father is otherwise in good shape, it may just be depression. But if his body is tired and his health not good, I understand his choice not to fight anymore. If he was an abusive father, I understand your choice not to want to watch him as he ends his fight. I've been through it and know it is more difficult than most could imagine even when a person is not abusive.