I've been to counseling along with grief counseling for the last 10 months but Fathers day and going to cemetary on Sunday to see dad, along with other sick relatives who were pretty sick this year but families didn't give up (and they are stable now) makes me think I was a horrible son....I have been caring for both parents for the last 10 yrs on a PT basis ie several nights per week sleeping at their home, doing all drs appts, medications, food shopping and helping dad to bathe, etc but mom and dad were still mobile, not severely ill and cooking, laundry, dressing was mostly done by them alone(87 and 89 yrs old).....but when dad broke hip last june and he was operated on and then went to rehab, I spent everyday with him ie helping him esp in rehab with bathroom, shaving, etc......but then towards the end of his rehab he had UTI (according to them).....after 9 days of rehab insisting on treating him, I forced a release to ER and they discovered he was really sick MRSA and it went to heart and he became septic .....he was responding to antibiotics and MRSA was testing negative but he wasnt well ie delirious, seemed to be in pain(from laying in bed for weeks) and initially eating/drinking very little and then none at all......they were initially sayin he was touch and go and then he seemed more stable ie vitals were all good and they transferred him out of ICU stepdown to a regular room....then they wanted to send him back to rehab for 8 weeks of IV antibiotics, urinary catheter , bedsore(apparently it was unstaged meaning i think it was at least a stage 3?), altered mental status, bedridden from being weak from not eating, illness and still not walking on his own since hip repair........and of course, they were going to put in a feeding tube...i decided against it and chose hospice where he was overmedicated and died in 3 days esp since they stopped his antibiotics...what im struggling with after reading medical reports and talking at length with hospital and hospice staff are as follows: He had Congestive Heart Failure(news to me) when he had surgery in June for HIP and his ejection fraction was 37%(not horrible)......when he was in his last days his ejection fraction was still at 37% even with the endocarditis ie mrsa infection to heart - his vitals were always ok even with no eating /drinking for weeks ie pulse, oxygen, bp, sugar all fine......im now thinking, he must have been fighting(and he was a strong 89 yr old ie still shovelling snow and gardening etc).......how could i not have given him more of a chance with feeding tube....they said he was dying and it would make it worse but how do they know he was dying if vitals were ok, mrsa was negative, etc.....just because he was delirious from illness and being in hospital bed for weeks(my dad hating being in bed even when well)......apparently when you have severe regurgtation of a valve, you need open heart surgery in most cases - dad wasnt a candidate and cardiologist told me that antibiotics for LIFE might work......everything seemed so "iffy" and i didnt want to put himn thru a 8 week stay bedridden in a nursing home with urinary catheter, feeding tube and picc line BUT recently his brother and a cousin were all really sick with catheter and picc line and cousin briefly with a feeding tube and ventilator = they are stable now and 1 is home and the other is still being treated.......they didnt have altered mental status like my dad ......was this the reason they accepted him into hospice when i asked about it.....perhaps if i got him out of bed when he was asking me, he would have felt better - began eating and contnued with antibiotics......i would have done allt he treatments for him but once they mentioned feeding tube, I said no......i know its not a good idea for people at the end or with alzheimers but im not sure he was at the end and he didnt have alzheimers - just severe hospital delirium...lost as to how to heal from this..even with so much help already received
It is complicated and every person, every illness is SOOO different. What one person survives, another succumbs to.
Please do not continue to beat yourself about the long list of what-if's. There are too many of them and you just can't know how things would have gone if he had not gone on hospice.
Don't forget - things could have gotten MUCH worse. He may have lived longer, but what about his quality of life?
Find a way to make peace with this and accept how things unfolded. You acted in good faith and need to cut yourself some slack.
My moms " vitals" were "fine" 10 minutes before she died. I don't think they always tell the whole story.
It sounds as though your poor dad had multiple comorbidities; it's hard for us nonmedical types to do a legitimate comparison of two seemingly similar patients.
You followed the best medical advice you could get. You got him to the ER when you felt he could benefit from more intense intervention. Doing a PEG tube on a patient with severe delirium is rather ill advised usually. Would dad have enjoyed being restrained? Bedsores would have been exacerbated by that.
Ssometimes, there are just too many illnesses and conditions occuring and each had a completely contadictory treatment. Bedrest vs. rigorous rehab vs. restraint for peg tube and IV meds.
Please try to see yourself as a loving son who did his best. Your dad lived a good, productive, and long life, aided by you. (((((((hugs)))))))).
The one thing I am 100% sure of, having read through your account, is that any lapses that there *might* have been in your father's care, making that care *possibly* less than optimal, were down to his qualified medical practitioners and not to you. And even by "possibly less than optimal" I'm talking mainly about their useless communication with you, I don't mean to suggest that they could necessarily have saved him.
If I were in your place, I would take all my father's notes to a disinterested, independent, qualified doctor and ask that person to talk me through exactly what happened. It sounds to me as though your father's hip replacement got infected - deep wound, infection in bone, incredibly hard to eradicate so that even when it seems to be cured it comes back - and your father died of sepsis; but
a) I am not a qualified health professional and
b) that does not mean that his injury and death could have been prevented. It's not like they had the option not to operate on his broken hip, he'd have been in agony, bedridden and that would probably have been the end of it for him in a much worse way.
Taking the time to explain PROPERLY is something I wish doctors were better at. I'm so sorry for how lost you feel. Please at least stop blaming yourself. None of what happened to your father was your doing.
Breaking a hip is very serious for the elderly. Most elderly do not recover. Going under for the time needed is not good either. It takes awhile for the mind to get back to normal. A feeding tube will probably not have helped. Your Dad had a lot wrong with him.
Hospice medicates to keep them comfortable and pain free. Also, to be able to breath easier.
The 1st of everything without dad is going to be hard. Father's day is a brutal one, as is birthdays. Remember that as they approach, it will help you deal with them better.
Be kind to yourself and don't beat yourself up over shoulda, woulda, coulda, if only thoughts. We all have a time when our lives are over, it was his time. Remember the good times and the man he was, honor his memory of life, not his death.
Hugs for all you did for him and are still doing by being there for your mom.
No?
You are not responsible for your fathers death.
You are grieving.
It takes time. You wouldn’t have it any other way. You loved him. You miss him. In time it will seem as the natural order of things to you.
He had two bad months and then he was released from all the pain and discomfort of old age and the invalid life style he was headed for had he survived. He lived a full active life.
You are suffering from what I think of as a form of PTSD. You must have been exhausted with being hyper-vigilant over his care. Even though he was very ill, it’s hard for us to grasp the reality that this is it, Dad is dying.
Please stop playing the scenario of deciding against the feeding tube over and over in your mind. When it comes to you release it and replace it with memories from a happier time.
If you haven’t, read the book “Being Mortal, Medicine and what matters in the end” by Atul Gawande. It might help you shift your focus to your mom and how to help her live her life all the way to the end as well as your dad did.
If I were your dad I would be thinking “well done and thank you for being such a great advocate”.
First year is the hardest, and any first is brutal. I wish you peace and compassion for yourself. Prayers.