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?
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?
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.
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.
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.
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.
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.)
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.
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.
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