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Hi everyone, the rn came yesterday & my dad recently had a uti (took antibiotics), now has (more than likely) cdif. He is on another round of antibiotics. I know they cannot disclose their true timeline, but I ask they give their best guess based off their experience. I also know no one truly knows- again, experience. The RN told me if he continues to get infections he is looking at another month. If he continues fighting, another 3. I keep praying. I am scared, sad, feel guilt, just overwhelmed with so many emotions. I don’t know what is right, what is wrong. What am I to do? What more can I do? I know this seems like a dear diary. Just wanted to know if anyone has or is going through this? Thank you & hope you are all well (:

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Nothing you can do but make him comfortable. Sounds like you're doing a great job so far.
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Demntadaughter Mar 2023
Thank you 🙏🏼
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The gamut of emotions is normal. But please don’t torture yourself with guilt! You’ve done nothing wrong and you obviously love your dad very much. None of this is your fault.

As others have said on here, guilt is really another form of grief.
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Demntadaughter Mar 2023
Thank you!
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Prayers for you and yours. I been through this three times. You get to feel all these emotions and no one gets to tell you not to! Allow hospice to do their thing. Keep praying and so will your friends here. When you called hospice you did right and they will help you.! thumbs up!
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Demntadaughter Mar 2023
Thank you . So much power in prayer 🙏🏼
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Demnta,

Back in December you posted to us that your Dad could no longer safely swallow--he was at that time on a puree diet according to your post.
I don't know how long he has been on Hospice care, but I am relieved that he is.

You mention guilt, Demnta, and I find that disturbing. Guilt is for those who have caused harm. You haven't caused this, and you can't cure it.
I am thankful that Hospice is being honest and that they are trying to prepare you for this loss. I am worried that you are not looking at peace for your father as his deserved rest, as a release from all he is going through.
I know that you know there is no cure, but I worry about your support system in facing this final loss, in finding a way to mourn your great loss, yes, but to celebrate all of the love you clearly have for your Dad, all of the happy memories you shared together, and for celebrating his release from torment, and his move to the heavenly home your faith tells you awaits him.

I would like to suggest you seek some counseling and the Hospice can help to guide you toward good grief counseling. I think best at this work are Licensed Social Workers in private practice who can help guide your thinking, and who can help when you are overwhelmed by your grief.

My heart goes out to you, and I truly wish you peace and comfort. Grief comes to us all in life, and is the price we pay for having known great love, which is a gift beyond compare.
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Demntadaughter Mar 2023
Thank you for your response. I love the “grief comes to us all in life & is the price we pay for having known great love, which is a gift beyond compare.” Such a powerful statement.
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I agree with Zippy. You have done all that you can at this point in time.

You care so deeply and it’s a very difficult time in your life.

Wishing you peace throughout the rest of this journey.
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Demntadaughter Mar 2023
Thank you 🙏🏼
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If you ask for a hospice consult then the doctor will visit and tell you about the assessment on whether he has a few months. If you choose it then treatment will be more comfort care. You can also ask how treatment will go for those infections
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Demntadaughter Mar 2023
Thank you !
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Personal opinion here. (and I will say I am PRO Hospice)
It does not matter if it is 3 days, 3 weeks, 3 months or 3 years..
If he is eligible for Hospice now as long as there is a continued decline he can remain on Hospice.
With Hospice you as well as he will get support. Emotional Support, Education, Encouragement as well as help. A Nurse at least 1 time a week, a CNA at least 2 times a week and all the equipment and supplies you need.

By the way you need to remove the "Guilt" from your vocabulary. Try another "G" word. Greif or Gloom. Substitute it also with Gratitude for having a father that you care about and that you obviously care deeply about.

I can tell you what you should not do.
Do not have a feeding tube placed,.
Do not have IV's for hydration.
What you should do is have a POLST (more detailed than a DNR, it may be called by other terms in some states)
Spend time with him.

And thanks to someone that mentioned this in a comment on here I have been listening to Hospice Nurse Julie. She has YouTube and I have seen her on FB. She is honest, informative and matter of fact about Hospice and Death and Dying. Look at a few of her videos.
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Demntadaughter Mar 2023
Thank you! I will look into her!
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Hospice is wonderful and not a death warrant. He'll continue to be treated for the infections with oral antibiotics, so don't worry about that.

When I was very suddenly faced with this for my dad through his terminal cancer diagnosis after no symptoms, the way I got through it was by coming to the realization that life really is a circle that comes to a natural conclusion. That last journey isn't necessarily expected, the way we want it, nor enjoyable for anyone, but it is all normal. I just made the decision to help him live that part of his life just as he'd lived the rest of it -- with dignity.

What we do for our loved ones at the end of their days can be the greatest gift we can give them. Feel free to grieve and be sad, but you still have time to show him you love him.
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Demntadaughter Mar 2023
Thank you 🙏🏼
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You really can’t predict what will happen most hospice nurses are well trained - just be thankful for what ever time you have left
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Concentrate on enjoying his last days with him, nothing more. We are all born to die, it is the normal evolution of time and space.

There is no room for guilt, it is a self-imposed emotion that will keep you stuck and under unneeded stress.

Think about what you have done, not what you haven't, we are mere mortals doing the best we can in life.

Sending support your way.
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Demntadaughter Mar 2023
Love the statement about self imposed emotion!Thank you🙏🏼
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After dad went on hospice care, he developed a pretty bad UTI. Of course antibiotics were administered but he never was able to really recover, so the downhill slide began in earnest. He passed away within 19 days., comfortably and without agitation, thank God.

Best of luck to you
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Demntadaughter Mar 2023
Thank you & sorry for your loss 🙏🏼
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Please seek out a grief counselor.............Letting go may require some medications, but guided mindfulness meditation (I learned how to do it at our local hospital)can help your throughout the rest of your life.

There is no right or wrong, only acceptance and compassion will help you go through your Dad's final days.
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Demntadaughter Mar 2023
Thank you 🙏🏼
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Prepare for the worst and hope for different.
You said it perfectly. Many of us face it or will have to.
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Demntadaughter Mar 2023
Thank youu 🙏🏼
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Demntadaughter: It is so difficult and I'm so sorry that your father is suffering from these recurrent urinary tract infections in addition to dementia. Prayers sent.

My mother was on palliative care after suffering an ischemic stroke.
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Demntadaughter Mar 2023
Thank youu & sorry about your mom 🙏🏼
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i hesitate to mention this since it’s such a sad time for you but my son had aids and died 30 years ago last january.

WE wrote a book together called conversations with my son. it’s by terryann fisher and troy michaels.

it’s in a dialogue diary form and he knew what we were doing: trying to show caregiver and patient relations at the end of life to help other people.

i have no idea if it’s good or helpful but it helped me get thru a very hard sad time … and hopefully him too to think he was also helping others.

hospice is definitely something you need to look into.
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momkennedy1 Apr 2023
So sorry for your loss
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I am going through this now with me mother. About 10 days ago she started refusing food. She might have a small bite now and then but very little. She will still drink. This is a step towards the end I am told.

I will see her tomorrow and bring her a drink from Starbucks that she likes and still drinks. Will update as we go through this journey.
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