My father is 65 and has been ill through his life: arthritis w/ two hip replacements at 40, psoriasis, diabetes etc. We've always had a strained relationship, in the past good but he's often very unreasonable or even spiteful. He was a good father and always helped me out when he could.
In November 2016 his left artificial hip got infected and had to be taken out. He was in intensive care: the infection caused sepsis which spread to different organs and into the blood. He nearly died but they managed to clear up the infection and get him healthy again. The hip was replaced and he got out of hospital/care in the summer of 17 to have about one year of (relative) good health.
In Nov. 2018 he went back into hospital with pain in the left hip again: another terrible infection that went from the hip to various other organs and again sent him into a coma where he nearly died. Again they eventually cleared up the infection after months of treatment, and several episodes where they had to put him in an induced coma to treat him, all the time as he got weaker and weaker and often had episodes of delirium. Docs told me that there was extremely little chance of a 3rd artificial hip being put in.
In spring 2018 he was discharged before being sent to a residential care home out of the city to recover for two months, where he worked with therapists to get him walking a little bit on a frame and getting around the rest of the time in a motorised wheelchair. He got stronger and eventually went back to his flat.
Since then he has got much worse and in November 2018 was diagnosed with advanced liver cirrhosis. More than one dr told me that the chances of him getting a replacement were pretty much 0, and in fact, that they never even put him on the list. Since then he's been in and out of hospital again and again to have fluid removed from his stomach, living on his own for a while with carers visiting 3x per day but totally incapacitated. He has quickly become sicker and sicker. They told him there's no way he'd get his hip replaced.
All the while it's been me as the only son, and his gf (who has been truly fantastic) caring for him. His brother and mother visit from time to time, with his brother coming for 24 hours at a time (!) and doing basically nothing then going back to the UK (my father and I live in Germany) leaving me holding the ball. Now he's in a nursing home and at the end stages of his life.
I've been running around now for nearly 16 months from home to various different institutions, hospitals and homes, multiple phone calls everyday, bringing him anything he wants and visiting him minimum 3x per week as well as always being on the end of the phone to my uncle/grandma. I am absolutely exhausted. He is never easy to deal with, has criticised me several times for not doing enough and places increasingly unreasonable and unthoughtful demands on me. He's phoned me on holiday and given me a guilt trip. I'm working full time but have now been signed off work due to stress and im ill. I appreciate that he is needy and doesn't want to be in the situation but I just can't do anymore.
I try my best to stay patient, but has just become more and more demanding to the point where it's impossible to do what he's asking because his requests make no sense. I've spent nights at his flat where I've been able to get no sleep and had requests every 15 minutes all through the night.
I also feel guilty because when dr(s) told me he wouldn't get a liver replacement I didn't question it or beg, in fact I almost felt relieved that this wouldn't continue much longer - I feel really ashamed of that and feel like I could've done something to get him a transplant - but then I think, it's the drs responsibility to give him that option and after assessing him they never offered it - but still I feel very guilty like I should have pushed them to give him a new liver, but a big part of me wants it to be over. Maybe I'm just a bad person. Any advice?
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.
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.
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.
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.
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.
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.
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.
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.
Stop thinking with your heart and allow your head to take over; let common sense prevail!
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.
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.
Looking at all that, and looking at your father’s past health issues, it seems most unlikely that any pressure from you would have changed the doctors’ decision. Stop blaming yourself for the past problems of your father and for the limitations of current medical options. Guilt, quite frankly, is stupid! Use your energy in coping with the other pressures on you. There are good suggestions here, particularly in getting more helpful behaviour from your other relations. Find yourself a ‘mantra’ or some other quick sentence to tell yourself about reality, when that ‘guilt’ pops up again.
(I sound like my mother, who was a school teacher and far too good at telling people what to do. I’m hoping that it might help just to get told. If it doesn’t, please forgive me.)
One doctor we spoke to, although she said he wasn't a candidate for a new liver, asked his age (65) and mentioned that there was some program in europe that gives livers for older patients from older donors. I didn't think anything of it at the time, especially given the overarching context of the statement, but now I feel incredibly guilty for not pursuing that avenue.
Do you think that if that had been an option they would've offered it to him? I have it in my head that by not acting I've just let my father die. If anything - and I hate to admit it - when she mentioned this over 65s thing my heart sank - I'm not sure why. Maybe because I couldn't bear to go through anymore? Either way I feel incredibly ashamed and guilty.
But surely it's their responsibility to offer livers to people - age not withstanding - and not the job of the kids to pursue it. I really don't know what to do here. I feel sick for having that reaction to her saying that there was special livers for over-65s - I should've been overjoyed to hear that. Not that she offered to put him on any kind of list and had previously said he wouldn't get a liver.
Neither you nor the loved ones who surrounded him in his last days owe it to him to drape yourselves in guilt.
You did far more than many would have done, and attempted to fulfill every treatment offered to him.
When you read the course of care you described, if you don’t believe the first reading, read your words again and again, until you believe what we as anonymous friends to you know- no guilt on you, now or ever.
Memorialize him for what you and he shared that was good and special, then let him be the best part of your thinking as you move forward.
In time, you may find that the best of his Spirit remains close to you.
I think that it is a normal part of the grieving process to play the coulda woulda shoulda game. The sad reality is that there just are not enough organs for everyone who needs one so transplant teams need to make hard choices based on who has the best chance and having a successful transplant. This decision wasn't yours to make and the burden isn't yours to bear, neither your mentally competent father or anyone else in his life made the choice to search for miracle cures.
Please, don't feel guilty. You did what you could for Dad. His life may have been one illness after another. One infection after another. The doctor should have never said what she/he did. It was a mute point.
This is one suggestion: you could treat the support you're giving him as a work project, limited in time but of unknown duration. Do yourself a schedule: allocate portions of your days/weeks to "work" to be done on his behalf. Outside those hours, make yourself unavailable except as emergency contact for his health care team.
His criticisms are unrelated to anything you're doing. They won't change whether you run away altogether or run yourself into the ground. He has reasons to be unreasonable, ungrateful, demanding, clinging - he's ill, he's dying, he may be in pain or afraid - but they are totally unconnected with your alleged "shortcomings." Therefore, since no sacrifice you can make is going to affect the source of his unhappiness and dissatisfaction, you should feel free to protect yourself.
If you can do something to cushion yourself from his attacks, you may even find that, although you still want his suffering to end, you will stop accusing yourself of wishing him dead.
Brlbrl, I'm so sorry that I responded to your original post without seeing your update. What I said about the liver transplant, though, remains true. Your father was not a candidate for a liver transplant not because he was older (he wasn't more than borderline aged) but because of his longstanding ill health. Simply, even were livers freely available, such a procedure would have put him through hell with almost no prospect of success. His doctors will have gone through an assessment protocol. If they didn't go into details it was probably because they didn't want to depress you to no purpose or explore options they knew would be futile.
After all that you have been through at your father's side you are going to feel dreadful, but please don't let it be about fearing you didn't do enough. I wish you comfort.
May God grant you grieving mercies and wisdom during this difficult time.
HE is truly the only one that could have healed your dads body, his suffering is now over, please do not pick up the suffering and own it for your own. Shame and guilt will destroy you. That is not what your dad would want.
Live a life well lived to honor him. That is the best thing that you can do.
Take some time for yourself now. Bereavement counselling might help you if it is available in Germany.
We have to go through this, but you will not regret being there after he has gone. Be kind to yourself and your dad.
Edit: I am truly sorry for your loss. I hope you shared a moment with your dad before he passed. There is no need for guilt. Remember, people who don't communicate or understand their emotions turn to anger, they are emotionally handicapped in a way so don't take it personally.
Take care of yourself.
You need more rest and a more realistic, workable plan. Take some time to consider what would be the "ideal" life - caring for dad, working full time, and having time to care for yourself. Then consider what would the "worst case scenario" life - dad with worsening health and increasing irrational demands (liver failure causes confusion and irritability) and working full time... but include time to rest and have time nurturing yourself. You'll find that your life can be enjoyable with a little more balance in the direction of self-care - even with your dad's issues.
You are NOT a bad person. You are stressed beyond belief and burned-out.
susan
Ask yourself if you really could do anything at all to make him happier and I think you will find that what you've done already is the best you could do. You might want to talk this over with a counselor so that you can accept all people are not created equal. Some glide through life with no health issues and others don't. I'm sure this is not how your dad thought his life would turn out, but it did. You happen to be the only person he can share his own anger/unhappiness with.
You are a good son. You were there when he needed you.
These are all words from your post. They all add up to "no guilt." It's easy for me to say you have nothing to feel guilty about, but it's easier said than done. All you can do is constantly remind yourself of the words above -- your words -- and tell yourself over and over that "unreasonable" is UNREASONABLE. There's only so much we each can do. And many things are out of our control. You've done the things you COULD control and that's all that we can expect of ourselves.
Don't EVEN think you're the only person to think about wanting it to be over. There are many others in these situations who feel the same. That's not an entirely selfish thought. He is in a place where he's being cared for and you need to reduce your efforts to what you can do without ruining your own life. His needs are being met. Take care of yourself. Leave the guilt behind. Best of luck.