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I agree with everyone here - that you are not a bad person and you have nothing to feel guilty about. You've done more for him than the rest of your family, stood by him and taken care of him even while he's been ungrateful and increasingly difficult, and increasingly ill.

However, guilt is a powerful thing and hard to escape when it's very intense. You seem most worried about not pushing for a liver transplant. Others have mentioned that the docs would probably refuse anyway.

This is just an idea, but it might be a solution to your painful feelings:

Why don't you talk to the doctors again? Ask them under what conditions he would be a candidate for transplantation. If you find out that even if you were to push very hard, he would not be a candidate, you could put your mind at ease, right? You'd then know, factually, that there's no recourse. But you did what you could and could really let go of any guilt you're hanging onto.

It may seem really scary to imagine this, but try the thought experiment. And even if it does turn out that they might consider him, you STILL don't need to go through with it! But I'm betting that they'll refuse (again).

Just a thought. Either way, I hope very much that you can find some way to get the respite you need, including an easing of this guilt and shame. You really don't deserve that on top of everything else.
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brlbrl85 - I'm going to make a point by examples. They may sound strange but please bear with me.

Can you lift a 10 pound dumbbell and and hold it out straight in front of you? No problem, right?
How about holding it for 1 minute? Doable.
How about holding it for 2 minutes? A stretch and strain but probably doable.
How about holding it for 2 hours?
How about holding it for 2 hours while jumping up and down and while someone yells and screams at you for doing a bad job? This is where you are with your caregiving responsibility for your dad.

You are burned out and can't wait to put down the weight. Who could blame you? None of us who know what it's like to be a caregiver.

I believe you love your dad and you want him to live. But your dad is not living. He is dying and he is taking forever to die, thanks to modern medical interventions.

And why would you want to prolong his dying process? And feel guilty that you wouldn't?

I wouldn't.
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lealonnie1 Jan 2020
Love that analogy!
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Thanks for all your replies. I really just felt like I couldn't fight it anymore and couldn't motivate myself to even feel like I wanted for him to get a transplant. I felt so ambivalent and apathetic and I like I wanted it to be over. I didn't make a conscious decision not to pursue it, I just didn't pursue transplantation on his behalf as an option. Is that terrible? That makes me feel so guilty like, if i really loved him I would've fought for that.
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lealonnie1 Jan 2020
We've all told you already that you are not a 'terrible person', but you are the one who needs to believe it. "Love" has nothing to do with being ready for a parent to pass away. Serious, ongoing & long term illness DOES. Who wants to 'live' like that? It's no life he has anyway. What is a new liver going to do for the rest of his issues?
Stop thinking with your heart and allow your head to take over; let common sense prevail!
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You are not able to force a doctor to provide a transplant, there is a lot of criteria that needs to be met to get on the list. Please don't beat yourself up over this. The doctors reviewed the situation and made a determination based on all the facts.

Honestly your dad could have fought if he wanted to pursue that avenue. This is his life and you can't care more than he does.

It is okay to be tired and just over all the pull on your life from years of caregiving, that doesn't mean that you are a bad person or have a character flaw. It means that you are tired and over all the pull on your life. That's it, no hidden issue.

Be what you can to your dad, not what he wants or demands, what you can.

None of us know how long we have, we aren't promised tomorrow, so forgive yourself and your dad, love him the best you can and be thankful that he got as many years as he did. Spend what time is left making good memories, it will be a challenge but it is possible.

It is okay to tell family that you are not going to continue daily updates, you will do once a week and call if anything happens. Don't own their guilt either, they can call him.
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@brlbrl85....First of all, stop beating yourself up. You've done nothing wrong. YOU ARE NOT A BAD PERSON! You didn't give him his sickness, that's on him. Even if you begged, he would probably not be a good candidate for a transplant anyway. Let nature take it course and don't let guilt consume you.
I still have my 95 year old mother living (at a NH) and let me tell you, she's a handful. Miserable, hateful woman. Has given me the worse case of guilt you could ever know. I've bent over backwards for her and all I get is kicked in the a$$. Frankly, I can't wait for her to die.
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jacobsonbob Feb 2020
Bittersweet, to some extent I can relate. My mother, who incidentally turned 95 yesterday, is not hateful, but asks endless questions about everything, has great trouble hearing the answers, and then either forgets the answers a couple minutes later or asks followup questions (some of which are difficult to answer because they don't involve me directly). She has been in a nursing home for 8 years (1 1/2 in PA, 6 1/2 in OH). I visit for about 2 hrs every other day, and I'm tired and frustrated by the time I leave. (I'm tempted to shout "I DON'T KNOW!! and sometimes I raise my voice more than necessary.) She had been bedridden for 6 years. I retired almost 7 years ago (about 1 1/2 years earlier than originally planned) and moved 500 miles to take care of her and my father (who died over 5 years ago at 90 1/2 and was very easy to get along with), but it got to the point at which this wasn't possible for either of them (even with outside care for my father). She sometimes asks "Why am I still here?"--referring to herself still being alive. (I ask myself the same question, but with a different connotation!) I'm now 67, in good health, and want to get on with my own life (or perhaps I should say "get a life") while I'm still capable of doing so, but I would feel guilty about moving away while my mother is still alive or at least while she recognizes me. I'm just afraid she'll live so long that I'll be old or develop health limitations by the end of her life. Although I've saved money by living frugally (some would say minimalistically) during my working years, she is sufficiently well-off that the nursing home costs have relatively minimal financial impact on her, and she wants my sister and me to inherit it--although I try to put this out of my mind, I would feel guilty moving on only to come back to "pass GO" and collect the money (actually, stock), but I wonder if it will happen so late that it will just serve my own eventual care expenses if I live that long. However, I figure I would stay around for her even if there were no inheritance expected out of a sense of duty. Fortunately, she is in no pain, but she has no quality of life. BTW, a couple years ago she asked if I were "waiting for her to die" but not in a sarcastic tone, and I answered "I'm not here twiddling my thumbs and tapping my feet in anticipation of it, but I'm living here because you are still alive." Sorry if this is rambling or parts of it not relevant to your comment, but I can relate to what you are thinking although for somewhat different reasons.
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I don't think it would have made any difference if you begged them to put him on the transplant list. It does not work that way. It's a medical decision and it was not yours to make. You were smart to accept it as they have strict criteria and family member's pleas are not going to influence them. It was proper for you not to waste your limited time and energy on that. You'll be OK.

Your dad is already living on borrowed time. He's like a cat with 9 lives! Any time he has left is a gift and if he squanders it, that is his choice. You need to take care of yourself and trust that he is being cared for by others. That's fine and you need to take care of your needs as well.
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brlbrl85, I see below that your father is currently in a nursing home but is unsatisfied with his level of care. This is good -- you can take a break knowing he is not being neglected. That's as much as you (and he) can ask for. Let your dad (and Gramma and Uncle) know you're taking a much needed break to attend to your own health before it decline permanently, then don't answer his calls. Let the nursing home know you are available in case of emergency, just don't answer your dad's calls for a while, don't visit. Your father being in a nursing home is more than many caregivers have as an option! So, force yourself to take a break..you won't regret it.
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brlbrl85, I'm so grieved to hear of your father's seemingly continuous suffering and your emotional burden and now guilt. With you being in Germany, I can't recommend any practical resources, so I can only send you a virtual (((hug))) and tell you not to feel guilty. You weren't responsible for your father's illnesses and certainly not responsible for his cirrhosis. Also, we can't control the amount of help offered by other family members -- yours are no exceptions -- just read around in this forum to understand how common it is. You have done an absolutely heroic job of being there for your father! Yes, you are burnt out, so you need to do some self-care now. Are there no social service supports available for him? No care agencies to hire? Not individuals to hire? Even if your father has rejected these solutions in the past, you need to give yourself a long period of rest and just stop answering his phone calls for a while. Your being ill is a sign that you've crossed a dangerous threshold, so please heed the warning.

Also (and I realize this may be too late) there is such a thing as Mellatosis, which is a newly discovered reaction to the cobalt in some metal hip replacement parts. Stryker is the brand here in the US that is most known for this problem. There are probably class-action lawsuits developing. If you have the energy, you can research this and it may explain some of your father's problems with his hips. Just a thought. Wishing you peace in your heart, rest for your soul and improved health as you work through the complexities of life.
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Harpcat Feb 2020
I wouldn’t bother researching that, you have enough on your plate! And to what end anyway? He’s not going to have another replacement.
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You are NOT a bad person, You did nothing to feel sorry for--and nothing to make your father's health the way it is.

It IS hard to know how to tread the waters of caregiving, when you have not been close to a parent. Sounds like he has brought some of this on himself (the liver damage--alcohol abuse? ) A liver transplant is not a walk in the park, my DH had one 14 years ago and it has been and up and down thing. There are not enough donor organs for the truly 'worthy' patients. Also, your father's overall health with the hip replacement and subsequent infections would have rendered him a very high risk patient for a transplant.

I don't know anything about the health care system in Germany. I can only address YOUR sense of guilt, which is misplaced. You can only do so much, and yes, you DO burn out.

With total liver failure, he will not live long. If that sounds tactless, I apologize, but the liver is one of those organs we have to have to live.

Getting more in-home care for him and giving you a break might be an option. Refusing to answer calls for aid all night long is also something that has to stop. You HAVE to take care of yourself, or you will be of no use to anyone. Can you NOT spend the night? Again, not knowing the situation in Germany, I can't say what is available. Perhaps have a talk with his doctors about care options. And EOL care.

YOU couldn't do ANYTHING To facilitate getting him on the transplant list. It's a tough call for people who can be 'saved'. I know quite a few who were denied transplants, and they did pass away. There is a system in place that gives the 'odds' on whether the patient is a good candidate or not. Sounds like your dad's overall bad health was the deciding factor.

I'm sorry you are going through this. I totally sympathize. First, take care of you, then you can help him. Sounds like he does not have a lot of hope for a long life. 65 is NOT old, but he has had enough illnesses to last a 90 yo life.

I'd get the overall picture from his doctors (if you can) and plan for the future. No, it's not going to be what you want, but you need to be aware of what the future holds and have some kind of timeline, as dad is going to get worse. I'm sorry you're going through this. He sounds very difficult to deal with, but that's HIS problem.

No guilt, OK? You're not doing ANYTHING wrong. When people are sick they tend to lash out--not fair by any means, but understandable. And learn the fine art of cutting off phone calls, screening calls so you don't feel trapped, and walking out when he's unreasonable.

Good Luck.
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You are not a bad person, lets clear that off the table right now. There is no shame in wanting someone to be relieved of their pain. There is no shame in wanting a break from years of having to jump each time Dad has a medical crisis.

None of us can force a hospital or transplant organization to put our family member on a transplant list. The patient has to meet a health criteria to be added to the list.

My Aunt had a knee replacement go bad similar to your Dad's hip. She was very sick for a long time, on IV antibiotics for a very long time to clear up a C. Diff infection.

Mum had a cousin on a heart transplant list. He had gotten a virus that attacked his heart. Pat was only 54. They got him healthy enough to be on the list, then he had a recurrence of the virus and was taken off the list, as he would not have survived the surgery. He died shortly after.

It sounds like your Dad is a very poor candidate for surgery of any sort with his multiple maladies. It is sad, especially as your Dad is young, but it is not your fault in any way.

Is it Dad or your uncle who is now in the nursing home? If it is Dad, tell them you are taking a week off and will not be available to attend to Dad at all. They will have to handle any emergencies and can only call you if he dies. Then block Dad's number on your phone and allow others to jump to Dad's demands. You may want to let your Uncle and Granny know that you will not be answering their calls either. During this week, even if you are still working, carve out some couple time with your girlfriend. Go on a date night, dinner and a movie, or go for a walk, do something you have never done before. My son and I went to a local league hockey game on Saturday night. Never done that before and it was both inexpensive and a lot of fun.

It does sound like you need to put some boundaries in place to allow you to get the rest your need.

And yes, I will add one more chore to your list, even after saying you need to put boundaries in place. Please make sure Dad has all his paperwork in order POA, updated Will etc. If Dad has not done it, you will want to plan and pay for his funeral (with Dad's money) now. Believe me, it is far easier to do it ahead of time. Especially if Dad wants to be interred back in the UK.

If you belong to a Faith community, please reach out to them. Otherwise look into grief counseling, yes you can receive it prior to a death.
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brlbrl85 Jan 2020
Tothill - it's my dad who's now in the nursing home. He isn't satisfied with the level of care they're giving him.

What I really can't let go of is that I didn't beg or question the doctor's decision about the liver transplant, or push them to give him one and that I actually - if i'm being 100% honest - felt relieved that he wouldn't get one...I'm not sure why, maybe because I knew what it'd mean if he did - months and months more, if not years of looking after him. I'm ashamed to admit that, but in some way I feel like I could've done more to save him. What do you think?

The liver failure is from a mixture of poor health/drinking when he was younger and strong drugs for the various health issues.

Both Dad & I live in Berlin, the rest of the family in London. Grandma is 93 and still coming out here to visit. Uncle has visited maybe 5/6 times in the entire 3.5 year period that he's been unwell (excluding the period of relative good health). Yet still Uncle rings me every day asking what's happening and thinks that miraculously something can be done to save my Dad.
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Your father is 65 years old but experiencing health issues of a person who's 95 or older! He's been through more medical issues in his life than 10 people combined, yet here you are feeling guilty that you haven't done 'enough' for him at this advanced stage of the game? I give you kudos for all you HAVE done. For all the hoops you've jumped through. For all the sleepless nights, for all the errands you've run, all the phone calls you've taken, all the requests you've granted, all the trips you've taken back and forth, all the illness YOU'VE taken on as a result of the stress you've been put through.

You've done more than enough, my friend. Your father has reached the end of HIS life now, unfortunately, through no fault of yours. His chunk of time on earth is drawing to an end now, but yours is not. Please do not think of yourself as a 'bad person' but as a son who has done absolutely everything in his power to facilitate an easier and better life for his beloved dad. But the one thing you cannot do is extend his chunk of time here on earth. None of us have that ability.

Wishing you peace moving forward from this difficult time of life, my friend. And wishing you all the very best.
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