I am posting my question again - I posted my question last week as "dehydrated" but no further details. So, my father has late-stage dementia and he lives at home with my and my mother. He's unintelligible, confused, and some days eats very little. He can usually feed himself using a fork or spoon, but most days, he's just not interested. He has developed dependent edema of the calves and ankles. It's been this way for a few weeks and he has showed signs of slowing down and is tired. He is receiving in-home hospice services. They are treating him with Ted hose. My questions is that 2 members of the extended family feel that we are not doing enough - that a hospital ER visit is in order. I've contacted numerous medical professionals beyond those at hospice and all are in agreement that a hospital stay would not benefit a person with dementia - especially in the stage my father is in. I am struggling with guilt, but don't want to traumatize my father. Any thoughts would be appreciated.
At this point in the Hospice care, patient do not go to the Hospital, Ever, unless they break a bone, or their pain becomes unbearable, and unmanageable at home, and even then, you call your Hospice care organization, and they will guide you on this!
You need to tell the others who are pressuring you, that you are taking care of his every need, and that Hospice is on top of it.
Of course you know that this is the beginning of the end, and that your Dad is at the end of his life. You need to be Strong now, and when you don't feel strong, call Hospice, and again, they will be there for you! They can send out a nurse or clergy to help settle your nerves, so that you can be ready to face what is to come.
If at any time you cannot manage him anymore, they can put him inpatient into a facility (generally a Nursing home), or a Hospice Hospital.
These are difficult times, I'm doing in home Hospice for my FIL at this very moment too!
I cannot express enough, how you need to communicate with your Hospice team! If nessesary, ask your Nurse to speak with those family members who do not understand what end of life, Quality of life and Comfort care is all about.
Him going to the hospital is only going to prolong the inevitable, and will be difficult on your Dad. Let him be, in his own bed, and bring the Hospice professionals to him! I'm so sorry that this is so hard! I'm right there with you! Take Care!
I had the same situations with my mom who had heart issues. She was 97.5 and her cardiologist had basically said he'd done what he could for her afib. I could have rushed her back to him or to the ER when she started showing signs of more heart issues, but what was the point? She was ready to go and didn't want any further treatment. Luckily I didn't have nosey relatives second-guessing my decisions. I brought hospice in and she passed away in her own bed, just like she wanted.
So don't listen to people who don't/can't face the reality of your situation. You are doing the right thing. {{{{Hugs}}}}
Allow hospice to help you to keep your father comfortable and well cared for until the end. We are at about the same point as you. Much peace to you all.
If he has requested "no interventional measures" then adding a diuretic or something to reduce the swelling would go against the wording of the DNR. Doctors hate this kind of thing--families fighting in the hallway over last ditch efforts to keep a loved alive a few more miserable days......
Keep him comfortable at home. And hang on, it will get worse, in some ways.
My best guess? The busybody relatives were never a part of the caregiving team all along, were they?
I am sorry for what you are now enduring, bless you in this time of challenge!!