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My father has terminal cancer and has suffered many other traumatic health issues over the past 7 months. He hasn’t organized anything for himself as far as a proper POA or living will. He’s been on the edge of death a few times and has made almost complete recovery. He’s a warrior in many ways. Every time he’s made a recovery I’ve pleaded with him to make proper arrangements and he doesn’t. When he dives into critical condition there is mass chaos and drama, causing a lot of stress and harm to me. Our family is incredibly dysfunctional, so that makes it even harder and stressful. Add I live 3000 miles away. I want to run to him every time something is wrong, but when I ask for something, it gets throw back in my face. How do I exist in this situation and still protect myself? How do I be the daughter he needs and not get sick myself? He is in the last phase of life and I feel guilty not being able to be there 100% of the time to protect him. It’s bridging on toxic behavior, which is not uncommon for him in general. I’d love some thoughts or advice on this.

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I don't know if what I'm going to say will be useful or not -- I can be off-base sometimes (like any other advisor). So see if there's anything here you can use. If this is too long to read, it's okay to scroll to the bottom. (Sometimes I'm longwinded, sorry).

As a hospice chaplain, I often see adult children going through similar situations with their parents. And very often they're expressing guilt because they can't do everything.

Usually the parent is either very old or very ill and thus very frail because of it.

Something happens and the parent gets scared and calls the person they think of as a kid, rather than calling someone local (like 911 or a neighbor). Partly this may be self-protective wiring from our mammalian past: if you let strangers know you are weak maybe they'll throw you to the lions to save themselves, or maybe they'll kill you outright, but members of my own tiny pack might help.

Partly it might be the result of cognitive decline, or of compromised thinking because of panic.

Either way, far too often the parent is ignoring, or has forgotten, the fact that their adult child is in the middle of young-to-midlife adult things - tasks and obligations, the new gig economy (which the very old often forget even exists), the new way of being an employee (which seems to require reading emails and writing notes even after hours).

Meanwhile, the adult child in the situation is trying to serve at least two internal demands from their own psyche: Be the rational one who can take care of this crisis and protect those who are weaker ... AND ... experience the child's natural fear of the death of a parent (often with emotions leftover from decades ago).

I've seen adult children from 20 to 70 imagining that the reason their beloved parent has died is that they -- the kid -- didn't do enough. 'Maybe if I'd been able to come running one more time ...' or 'Maybe if I hadn't needed to sleep ...'

But this guilt exists to protect us from our natural grief at the loss, or impending loss, of a relationship that has been so important to us when we were children (whether or not the relationship has prospered after we moved out). Losing a parent is one of the larger challenges in the cycle of this life we're in, or you could say one of the larger rites of passage.

If you can find a way to accept the fact that he's going to die no matter what you do or don't do ... and if the family can get him some assistance via hospice ... then your grief can be less complex. Alas, the grieving will still be painful (again, no matter what you do). But you don't have to beat yourself up for not being able to save him.
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Upstream Nov 15, 2019
maggiebea, What a well-thought-out response! I might add that for us adult daughters, our parents are of a generation for which employment was often optional for our mothers. They don't understand that working women nowadays are just as tied to work as men, plus most of us are still responsible for many of the "traditional" female tasks at home. My mom only worked full time from about age 40 to age 55, then my parents retired to travel. I have been working full-time my whole adult life and at age 52, only foresee that this will continue until 62 or probably later. I think most of us Gen-Xers are in the same boat.
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Respectfully, sometimes we children react to our parents as the people we *wish* they were, in the relationship we *wish* we had with them rather than who they really are and the relationship the way it actually is. This is quite exhausting. A gentle reminder that he is a fully adult man. If he wanted his relationships or things a certain way, he could have brought it about by now. It appears (objectively) that this isn't what he wants, nor is it a priority for him, nor does he care of its impact on his LOs. If he was raised in chaos, then chaos is his normal. But it shouldn't be for you. May you -- and he -- have peace in your hearts as the hospice journey unfolds.
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Reply to Geaton777
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I feel your frustration in your words & can sympathize with you. I honestly don't know what on earth you CAN do here, except what you've been doing, but only if it's not going to cause YOU a breakdown or financial ruination. The selfishness of some seniors is mind boggling to me..............the very thought of putting my children through something like this is unthinkable to me. You are an amazing daughter for rallying around him in spite of all the dysfunction and refusal to do the right thing about getting his affairs in order.

Remember; you cannot protect your father from HIMSELF. I know how hard it is to be so far away from him in times of crisis and impending death, but this is how HE wants things to be. Keep that in mind when you're beating yourself up for what you're not doing. It's what he won't ALLOW you to do. So wait for The Phone Call, I guess, and be there for his funeral. At this point, I don't know what else you CAN do.

Best of luck and here's a big HUG for all your stress & grief, my friend.
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California1234 Nov 14, 2019
Thank you for this❤️
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Oh man I can understand the chaos when there is no paperwork in place giving anyone the authority to act on his behalf.

My dad was not going to sign any paperwork that gave me authority to help, I lost 10 years of my own life because of the stress and trauma of dealing with the hospital and insurance with no authority. I told him straight out that I was not going to do that again, he has every right to keep his own counsel and not do anything, but that he would be flying solo next time, I would not even go to the hospital and that whatever the doctors decided would be the outcome if he was so sick that he could not advocate for himself.

He signed the paperwork, he knows me well enough to know if I say it, I mean it and I do what I say.

Sometimes we have to step back to protect ourselves. Maybe your dad likes everyone fighting over him and he would not change that to save his life.

We do the best we can and try to let go of the rest. That's all anyone can do.
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NeedHelpWithMom Nov 14, 2019
Great point! We can only help or assist those who want it! His daughter has tried numerous times to sort things out. You get this because you went through it with your dad.
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My Dad passed in 2016. He was 89. He stated to me that he didn't want to go back to his cardiologist that he was tired of it. I did not "make" him go. I saw other signs that I remember now but was confused about when it was happening with him but my Dad was "in charge" in that he would just look at me and say "no" and the look in his eyes meant exactly that....no. I asked him if he wanted to go to the doctor one day and he said no and I said why don't you just come to my house? Same answer...no. I only lived 3 miles from him. He was as lucid as anybody except that he said he saw his brother (dead brother) on the sofa reading the newspaper. Well, Dad was falling asleep a lot in his recliner and since he made good sense otherwise, I assumed that he was dreaming when he drifted off. He had Congestive Heart Failure. Well, now that I look back, I think he may have had a UTI and the edema he was suffering from was getting worse than I knew. He was shutting down. I called the EMS one day when I was visiting but he could not stand up. I only had a POA (Power of Attorney) and Dad had instructed DNR. I spoke with doctors and they said it was Hospice time that he had maybe two weeks or three. He was on the breathing machine by that time and they couldn't take him off so I knew exactly what was going on. After Dad passed, I started that business of "why didn't I take him on to the doctor?" "Why didn't I realize he had a UTI?" Well, it was mainly because he was lucid and not complaining and was 89 years old. I stopped letting my mind go there because the cardiologist said most don't live that long with a faulty heart valve and he now had TWO faulty heart valves per the echo done at the hospital. The cardiologist said he had lived a great life for somebody with Congestive Heart Failure and was upright, lucid, eating, enjoying his TV shows, visiting his friends at the fire station, etc. I told you this just to say that they want to stay in charge even with me being in my sixties, Dad still saw me as the oldest "child" but he made his decisions. I did my best with what I knew at the time and I stopped beating myself up and trying to rehash what I shoulda, coulda, woulda have done. It wasn't helping anybody. Bottom line is the parent wants to stay in control of their situation. Just allow your Dad to call his own shots if his mind is good, meaning no dementia/alzheimers and call it good. We all know on this site that the elderly also become stubborn and crotchety and we probably will too. Ha! Don't beat yourself up. Your Dad is terminally ill. You are grieving your Dad now. You can help with the final arrangements when he passes on and know that you tried and did your best considering that you live 3,000 miles away. People have to move due to careers, marriages, and other things. You cannot make your Dad do what you say. When his time does come, they will make his passing as comfortable as possible and let you know when to come. By the way, you can't be everything t him and keep your health too. I tried that a few years ago and ended up in the emergency with palpitations and the cardiologist said it was stress related. Yes ma'am. Take care of yourself because there will be arrangements to make when the Lord comes to escort your Dad Home. My best to you and your family. Take care of yourself.
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Reply to elaineSC
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Sticking strictly to your father's point of view, what IS the daughter he needs? What does HE want of you?

If you're 3000 miles away, it doesn't add up that he - again, strictly speaking - needs your practical input. There may have been chaos and drama, but he has muddled through.

Is it possible, asking this gently, that what is beating you up emotionally has been the longing to do more than it is possible for you to do? And anxiety that things you think need doing don't get done?

Who is actually on the scene to provide day to day support?

It would make life simpler and more controllable if your father had got those documents done and authorised responsible people to keep his life as organised as it can be in the circumstances. But it hasn't been *necessary*, not to him.

Suppose you were to rise above the fray and keep only to daughterly communication with him, about him, and you, and the things it's important to both of you to get said while you can. Would that change the kind of conversation you have with him?
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California1234 Nov 14, 2019
Thanks for writing me.

in the past 7 months I’ve pretty much jeopardize my career and almost my personal relationships to be there for my father. Including being on the phone with him while he was having a stroke and calling 911 from 3000 miles away. I’ve spent over $10,000 flying to see him every few weeks. Being a starving artist, that money is everything I have. He’s had a heat attack, stroke and terminal cancer. I’ve had to fight my siblings off to get him the care he would want. After the heart attack and stroke, I asked him to figure out his needs so I could focus on him when he got sick again. Instead of defending myself to horrible, useless family members who were just trying to cash in. I warned him of their intentions last time he was down and out. And that if happened again, I couldn’t put myself in that position again. I’ve put everything on the line. Is it difficult to be far away, certainly. My problem is not that I feel like I haven’t fulfilled my daughter duties. My problem is I’m trying to figure out my boundaries so I’m not dragged down with the ship.
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When you next see or talk to him, always part on good terms and just tell him you love him. Do not beat yourself in the head every time he has a crisis. You most likely will not be there with him when he passes but at least you will have a clear head that you were not at odds with him. The rest of the family will grieve differently as you described
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Reply to MACinCT
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It sounds like a tough situation. Plus, a lot of unnecessary stress. Sadly, it seems that seniors don't appreciate how their behavior can cause a lot of issues on family members. Are you sure that he's thinking clearly? Has he suffered cognitive decline or dementia that is causing him to not make arrangements. Is the fact that he has no POA or Advanced Medical directive what worries you?

Is there a spouse or local person who can have him evaluated for Hospice? They have case workers, social workers, nurses, etc. who can really help the entire family. At least they do that in US. I think they have something similar in Canada.

There are many dysfunctional families. I know what you mean about that.

But, if he refuses to take action and is competent, there's not much you can do. He won't be a DNR and will get full treatment to revive him should his heart stop. Maybe, he wants that. I'm not sure what being there would accomplish if he is resistant. There would be lots of time waiting around a hospital. I'm not sure I get the guilt part, but, I'd focus on keeping your expectations low. I try to let go of things that are out of my control, even though, it's frustrating.
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California1234 Nov 14, 2019
Thank you for this response. My sister who also lives in LA just flew there to try and straighten the mess out. We’ve decided to put him into hospice. Currently struggling with that. The phone calls at all hours, the family drama, just overall him dying has caused an enormous amount of pain. On top of that, not having his business in order has caused many issues. His mental state has declined rapidly this past week. I think he’s fed up with all the trauma and illness. I really rallied him and this go around I’ve stepped back because I can feel the life being sucked out of me. I guess I’m burnt out.
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While I can see the reasons for the frustration, I'm not following on why you feel that you haven't fulfilled your duties as an adult child. If he's incompetent and not able to make decisions, care for himself, etc., then, he needs a Guardian to protect his interest. You can consult with an attorney about that process and if it's feasible. And, if he's not, then, it's on him to make those decisions.

When I go out of my way to help someone, I acknowledge and treat it as such. I don't see a problem with being honest with myself that I have done my best. I'm proud of it and it gives me peace. That's the reality and something I can accept. I might talk to a counselor about your perceptions. I'd keep in mind that you can live in the same house with a senior, yet they still ignore your advice and continue to do as they please.

Unless his doctor says he needs 24/7 care, I wouldn't be keen on being with someone around the clock. I hope you can find the answers you need.
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NeedHelpWithMom Nov 14, 2019
I agree, Sunny. This daughter has gone above and beyond. She’s experiencing guilt. I go through that sometimes, even if we don’t have a valid reason for it. We have been brainwashed by family to feel guilty. So hard. Takes time to see things clearly and heal.
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You are the daughter, not the parent. You need to take care of yourself too. Is he in a facility where care is provided? He might be ready for hospice care. If not, consider that if he'll accept it. Or consider having aides come in to assist him who will be in touch with you as needed. If he doesn't make arrangements for POA, a living will with his medical directives, and a will, prepare yourself for a big mess after he passes away and during this period. He's making it more difficult.
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