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?
how are you feeling today? Just following up my friend. Have a great day and don’t forget how awesome you are!
xoxoxo
susan
So sorry to read that your father has passed on. Sincere sympathies to you in your time of grief.
It is natural to feel distraught and guilty, but you have to temper that with understanding there really isn't anything you could have done. You did what you could and probably more.
Wishing you could change things won't change the outcome. More than likely there wouldn't be anything you or your dad could do about the transplant. Since his mental faculties were more or less intact, it would have been mostly up to him to pursue it anyway, and in the end it would be the decision of the medical team. He went through several serious issues with the hip and sepsis, and even if the doctors would have agreed to do a transplant, odds are that he would not survive the surgery/recovery. Given his condition, it isn't likely that he would have qualified for the transplant, so please don't feel guilty about not pushing for it. This is a medical decision, out of your hands.
It is sad that your father was so young, comparatively. He was actually younger than me, by a few years. In some ways his passing was a blessing, as it took away any pain and suffering he was having. It doesn't make it any easier, but I hope you can come to understand that there wasn't anything you could have done to change the outcome.
You said this doctor who mentioned programs for older patients said "he wasn't a candidate for a new liver". That sums it up. Many people get transplants even at older ages, if there are organs available AND they have good prospects for recovery. You stated you felt relief when the doctors said he wouldn't get a transplant, and now feel guilty about it. This is also natural. The unending tension over his various complications has taken a serious toll on you and had left you torn between guilt and relief. Now you add grief to those.
"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."
As others have said, there are many criteria for getting transplant approval. Given his complications with the hip, compromised liver, diabetes and other issues he was not likely to be approved. The doctors need to know that someone will survive surgery/recovery and have a good chance at life. Just the surgery alone, in his weakened state, would likely have killed him. IF he survived, there would be a long recovery and many medications to ward off rejection and you have no way to know if he would survive the surgery or the recovery. His other complications would have made this extremely difficult and would have caused even more pain and possibly suffering, for both of you.
Your exhaustion will only feed the feeling of guilt and shame. You need to get some rest and regroup. If counseling is available, you should consider it. We are only human and can only do so much. You did all that you could and are now paying the price.
Please, get rest, get help and although you will still feel shame, guilt, grief, it will get better. You do understand, on some level, that this was the decision of the doctors, and there wasn't anything you could do to change that.
As others have also said, some of us have had those "secret" thoughts as well. We want to help, we want to encourage life, but sometimes there is nothing to be done and sometimes we know, deep inside, this is what will happen and it will be the best for all in the end. It doesn't alleviate the subsequent feelings of guilt and shame, but it is normal to have these feelings.
(P.S. If his mother or brother try to lay guilt on you, please don't answer their calls or contact. There is nothing you or they could have done and they should not harass you about this. Letting them continue, if they try this, will only make it worse for you, so if need be go no contact for a while.)
May you and your Dad be so blessed ! The next Christmas will be so great !
The advice that I can offer is:
1. Try to be as patient and kind as possible to your father. I know that there were times when I would loose my patience and be like "for the love of god if you need multiple things give me a damn list." It wasn't my best moments. But when you are exhausted and overwhelmed, it can be hard to be those things. Even if in the moment you recognize it, it is hard to pull back. However, now that my father is gone, I wish that in those moments I had been kinder. It is a regret of mine.
2. Your father isn't going on the list. Ever. It's ok. Even if you had pushed it won't happen. My father had renal failure and couldn't go on the list. Essentially, to go on the list they have to be healthy otherwise and really willing to do the after care. Neither of which he qualified for. So let go of any guilt associated with that.
3. Be kind to yourself. Take time and do things you enjoy, work out, go out with friends, don't feel guilt for these things. You will burn out and miss out if you don't take personal time. Don't feel like you are a bad person for your feelings. You are doing the best you can in a difficult situation. There are many people that wouldn't go as far as you have. You are showing your love by being there and doing the best that you can. Even if you have feelings of wishing it was over or whatever. don't be too hard on yourself.
4. This last one I didn't learn this when I took care of my father. When I took care of him, I focused on the drowning feeling. However, now my guy is in renal failure and I care for him and have found that the way I look at the situation and talk about it in my internal dialogue is very helpful. Instead of your internal dialogue being "it's hard, it's overwhelming, it's stressful" I tell myself "you are lucky you are such a bad ass bitch that you can handle this situation." Even if I don't feel it is true in the moment, I try to avoid the negative talk and move towards something positive. It's minor, but it does help. Even if that help is by not focusing on the negatives.
5. When your father passes. Your feelings will certainly be a mixture, mine certainly were. I loved him, I missed him, it's been 6 years in March and I still talk to him. However, when he passed it was also a relief. Everything that was difficult and stressful literally went away over night. Don't feel any guilt over that.
I've sometimes pondered what would have happened if the meat had been in smaller pieces, if he had been taken to the emergency room sooner, etc.--would he have retained his strength longer and perhaps lived longer? I've come to two conclusions--I did the best I could with the knowledge I had, and even if the outcome could have been different, he was declining such that he probably wouldn't have lived much longer anyway or been in much better condition while alive--something else might have happened, such as a fall. I just make a point of remembering that he lived a long and full life, so I'm thankful for that.
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.
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.
susan
You are NOT a bad person. You are stressed beyond belief and burned-out.
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.
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.
Take some time for yourself now. Bereavement counselling might help you if it is available in Germany.
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.
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.
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.
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.
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.
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.
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.)