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My mom and dad have both trusted me with their health for the last 10 yrs and for the last 5 yrs, I have accompanied them on all of their medical appointments (made the appts, ordered the car, etc), managed their meds, etc. Any given week could be 2-4 appts. This is the hardest part - my father trusted me and I feel in the end, I betrayed his trust by giving up so quickly and choosing hospice. I fought for his care when he broke his hip in June and was there everyday in the hospital post op. Then had to fight even harder for his care when he went to rehab - he was there 6 weeks before he got the mrsa infection - I was there daily and also had to fight for his care and mostly do lots of the heavy lifting ie taking him to bathroom, giving him haircuts, etc. But then he got so sick and I felt lost. When he was finally rushed to the hospital after lingering 9 days in the rehab, he was just so sick and I was continuing to fight for his care but when they mentioned he would have to go back for 6- 8 weeks in rehab with a temporary feeding tube, urinary catheter, bedsore, picc line for antibiotics, etc - I just gave up out of fear that he would suffer to much in order to possibly get better. I feel I needed to give him more time. I was just too afraid. Everyday I seem to meet someone who has a parent in their 90s (my dad was 89) and they tell me stories of how they are bedridden but being cared for at home by a son or daughter. It leaves me feeling broken that could have been my dad.

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Dear One,
The only question I have for you is; Would YOU want to live (maybe) through the treatment? Would YOU want to live old, sick, attached to tubes, in pain and bedridden with bedsores? It’s quality versus quantity.

Doctors sometimes won’t mention the “distress” and difficulties the patients through go while they’re trying to save them. And there is no guarantee that he WOULD have survived. MRSA is a bad infection. Then all that agony would have been needless.

It sounds like he was very sick. What did HE want to do? I’m sure he just wanted it to end.

Who mentioned hospice to you? It must have been recommended by a doctor. And they must have thought that he had less than 6 months to live, to order it. You can’t order hospice on your own. Wasn’t the doctor “telling” you about your dad’s prognosis (without using the word “terminal”) by recommending hospice?

Doctors are hesitant to mention the word “terminal” if the family is fighting to keep them alive. It’s a hard pill to swallow. I remember that decision with my dad. In the end, it was the best decision I made. He knew he was dying (and he told me so 😢) but I was “fighting”. I was open enough to talk to hospice however (like you) and they explained the dying process. (Wouldn’t you think I’d know, being a nurse? But I was the daughter 1st and the “patient” was my Dad.)

If the Good Lord had wanted anything differently, He would have done so.

Please know that the elderly are frail and a devastating illness can be the end.
All the best efforts can’t change things when it’s your time.

If your feelings of guilt persist, you should see a therapist or clergy person. Hospice also has family “after death councilling” for 1 year, free to everyone.

I hope you can get past your feelings. I, too, am sorry for your loss.
(((Big hugs))).
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Mhillwt Apr 2019
Thank you so much! I actually brought up hospice after they mentioned he needed a feeding tube ....they didn’t mention it it at all prior...and hence my guilt ...I was ready to go back to rehab with him for the 8 weeks of IV antibiotics that might work for endocarditis ie he was responding to antibiotics and mrsa was no longer detectable ...but he wasn’t improving ...mostly due to hospital delirium I think and heart infection that messed up his valve... I just couldn’t put feeding tube in him...it’s like once they saw that they thought I was comfortable w hospice they all basically agreed ..after he died they all told me things like he would have needed a miracle etc ... what messed me up was thst thru gave me that choice to send him back and that I had to mention hospice
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Mhillwt,
You are suffering from “misplaced guilt”. YOU did not “cause” anything to happen differently than it would have.
I was a hospice nurse and I can reassure you that none of the drugs (Morphine, Ativan and Haldol) are given in lethal doses. Elderly folks process and absorb meds differently and the effects can be stronger and longer lasting. I have been at the bedsides of dying people who were agitated, scared and in pain. That is no way to die. Better to be medicated. They sleep because their bodies are worn out and they can finally rest without fighting the anxiety and pain.
Aside from suicide, the Good Lord is the only one in control of “when” we pass on.

Your grief and guilt will lessen in the months and years ahead. You will have a clearer picture of the decisions you made. Remember WHY you made those decisions-because you didn’t want him to suffer. You did the right thing. It was his time. You were not playing God, you were carrying out His orders to be compassionate to others.
(((hugs)))

I just lost my mother 2 weeks ago. There was nothing I could have done differently. I told them to give her whatever she needed to keep her comfortable.
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Mhillwt Mar 2019
Thanks ….and im so sorry for your loss! I guess the whole experience was overwhelming and the fact that they told me he might get better with a feeding tube(temporary), picc line with 8 weeks of antibiotics, urinary catheter etc is what haunts me......he was gravely ill with a poor prognosis but they never said terminal......I gave up on him out of fear of prolonged suffering evenif he got better...the feeding tube is what made me say HOSPICE.....yet after 7 months, im still haunted..
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Thanks for replying; so, could I ask you to say a bit more about the counselling you've had so far?

Such as:
when did you begin this therapy?
how do you feel about the therapist? - are you able to say what you're really thinking to him or her?
what outcomes are you hoping for, and have you had some kind of rough timetable for them in mind?

You have been a trusted caregiver to much-loved parents for many, many years; your experience of your father's last illnesses and death was dreadful; and not much time has elapsed since it happened. I suppose what I'm saying is about reasonable expectations. Do you think you're making enough allowances for how much healing there must be for you to do?
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Mhillwt Mar 2019
I started counseling 5 weeks after his death...….but I also have a private therapist that ive been seeing for years due to anxiety/depression...….and another 3 hour session with director of grief counseling at sloan kettering in manhattan…..no matter what anyone says - I feel I messed up
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I can understand your thoughts. The end of life is a crisis which continues through the funeral, then there can be a huge let-down while you crash. All grief involves thoughts about how it could have been avoided, could have been different, and often this includes anger. But it is not true that you ‘killed your poor father’. You know full well what killed him, and it wasn’t you. It wasn’t the urologist either, it was the infection which your dear father’s body couldn’t resist. When your father regained consciousness and wanted to go home, he wanted to go home and be well. You couldn’t make that happen.

My dear MIL had ‘more time’. She died three months short of 100, but she existed through over 5 years that she had told me she wanted to avoid – she was totally bedridden and couldn’t talk, feed or toilet herself. She had asked for another great walk on the beach in winter, pneumonia a second time, but this time no doctor, but she was too weak. My guilt was about that promise.

We all have our regrets. You honour your father best by remembering him with love, and making a worthwhile life for yourself. Best wishes.
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Mhillwt Mar 2019
thanks......and im sorry about your MIL.....I always thought my strong father would make it to 100 but he died at 89....I do feel that the urologist was very negligent but that's another story....
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My father died at 82 from MRSA after open heart surgery. He had not been terribly sick before although he was not good about taking medicine. I will just say that when one is compromised it is very hard to fight that infection off. He never fully regained consciousness. It was terribly sad but he had suffered a small stroke from the operation. I know he would have had a hard time dealing with that. I have to look upon it as being his time. There is no point in guilting yourself. The quality of a life is more important than the duration of years representing it. Living into one's 90's may be fine if there are redeeming qualities but not just for the sake of making it that long. I hope you can find ways to cherish memories and not be absorbed with thoughts of an age that was not reached.
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Mhillwt Mar 2019
thank you and im sorry that your dad also got the dreaded mrsa….. yes, for some reason I was so focused on his 90th birthday celebration and never thought he would die 4 weeks before it...
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I'll tell you my experience with caring for my dear husband through end of life in hopes it will relieve some of your guilt by seeing the alternative. I was the sole care giver.

Others who went through it warned me how the last month is intense. I kept him with home hospice. In hindsight, he would have been much more comfortable to spend his last month in the hospice house with 24/7 care. My husband was inadequately medicated for pain. In my circumstance, I would prefer to see him sleeping through it, with short waking moments for quality visits with me instead of his waking moments for medical care.
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Mhillwt Mar 2019
thank you......I wasn't sure if my dads pain was emotional or physical......but once the meds started he was no longer alert....a few times he woke up and started to look around and knew he was trapped in a hospital bed and begged me to take him home and out of that bed....I relive that in my mind constantly......I wonder if he would have been happier at home but he was too sick to move.
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I'm so sorry. It's such a mixed bag of emotions. Please try not to beat yourself up. You loved him too much to let him hurt or suffer any longer. You took on pain and loss so he would never have to feel those things ever again. That is a beautiful sacrifice, albeit the most painful too.

There will always be what ifs and doubts. When those feelings hit, I like to think what they would say to you now. Would they tell you to be miserable and steeped in grief, or would they thank you for helping him be free, and encourage you to live your precious time on Earth as joyfully as possible?

You know their answer! Everything is and will be okay.
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Mhillwt Mar 2019
thank you
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I’m so sorry about the loss of your dear father. My 89 year old father-in-law died last June, after out-patient hernia surgery. He was in good health (except for bad knees) still driving, mind as sharp as a tack, riding a lawn mower cutting his two acre lawn. Surgery is really never simple in one so aged. It only takes a small issue that completely spirals out of anyone’s control. My poor father in law passed away 4 weeks after his surgery, he went into rehab as a TOTAL assist. He contracted sepsis, then developed some kind of super bug UTI that made his urine dangerous to caregivers, then it was determined his kidneys were failing. Dialysis was mentioned by one Dr. We decided to forgo treatment, this sweet man was so sick & dialysis is hard even on much younger bodies. We KNEW it was best to send him to hospice, but oh, the awful feeling that we were sending him somewhere to die! (My husband is an only child, so I was heavily involved in these decisions, not that it compares to your love for your Dad) I had to REALLY work on my thought process... we weren’t sending him somewhere to die, we were RELEASING him from sickness & pain. Everything we could’ve done would only have created more pain & greatly diminished his quality of life. Our brain tells us that it’s time to let go, but our hearts can have a much harder time accepting it.
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Shane1124 Mar 2019
Mollymoose I know it was a difficult decision for you but you absolutely did the right thing. Sorry for your loss as well.
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It's okay what you did. Making our own choices are hard enough, but to make choices for someone else is excruciating. From the list of ailments it seems he would not have ever gotten better. When elders fall it is usually the beginning of the end for them. The hospital, rehab, and nursing home cycle gets to be too much for their frail bodies. Try to talk it through with friends and family, but concentrate mostly on the best of life you had with him, and try to not make comparisons with other elders. 89 is a long life.
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Mhillwt Mar 2019
yes.....my dad fell 3 summers in a row but always bounced back....he bounced back this time as well....after 6 weeks in rehab he was almost ready to come home and then developed MRSA which became septic and went to heart.....the damn urologist didn't change his urinary catheter...that things causes so many infections because the staff at rehab don't want to change them.
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Im so sorry for your loss
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Mhillwt Mar 2019
thanks
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Breaking of a hip in the elderly is very serious. Some people don't survive it. They just never bounce back. Those medications are to make them comfortable and pain free. Ease their breathing. Sometimes a chain of events weakens them and they just can't turn around.

I am so sorry for your loss.
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Mhillwt Mar 2019
yes ...he did bounce back but that infection from urinary catheter did him in.
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I completely understand you. I felt the same way about my Mom. She had made it very clear that she wanted whatever measures were to extend her life. No matter the risk. No matter the hardship.

In the end, there was nothing left to do.

Yes, I could have put her on machines to extend her life....but I would have also extended her suffering. Her pain could no longer be controlled.

if you have ever seen someone linger in great pain...you would never think about taking your father down that road.

yes, I think we all feel guilty for not doing more, knowing more, seeking more resources, etc.

but, you need to know that you did make the right choices. You did the best thing to be done. Accept that no matter the outcome, you were going to feel guilt. If you cannot move past it, then seek the help of a therapist.
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Mhillwt Mar 2019
yes...he was in emotional pain but not sure about physical pain ie it was hard to watch
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So this very sad series of events leading up to your loss of your father ended six or seven months ago?

If you haven't already, it is time to seek professional grief counselling. You have been through severe, traumatic stress, in addition to the loss, and you deserve help to get you past this experience. There is no shame or weakness in not being able to do it alone.
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Mhillwt Mar 2019
yes7 months....ive been in intense counseling yet it continues ie guilt
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Sometimes I have a tiny feeling of regret that I didn't opt to fight when the nursing home told me that they couldn't keep mom's O2 levels up (she had pneumonia), but my rational mind knows that nobody lives forever and pushing to continue the life she was living in the nursing home would not have been a kindness. And as I look back at the time I was caring for her at home I realize I made mistakes and I likely inadvertently caused her suffering because of it - there is no perfect way to age and die, just a lot of hard, hard choices.
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Mhillwt Mar 2019
thank you
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Please learn to let go of your guilt! You can only do the best you can and it sounds like you are.
You don’t state your dad’s age or diagnosis; sounds like he developed sepsis from MRSA infection?

Human bodies give up and everyone passes away. I am positive that you as his daughter took the best care of him.

Whatever the disease/illness/condition is/was prior to his passing is the cause of his death, not hospice. Hospice treatment focuses on comfort and relief from pain until one succumbs to their illness. Nature taking its course.

Don’t feel guilty. Think about the fact that all the care you gave your dad helped him extend his life longer & the joy you have to him throughout his life.

Good luck
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shad250 Mar 2019
He was 89 mrsa OP mentioned
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