How did "imminent" flag change things for you/your loved one on hospice?
Our nurse/case manager suggested thinking about this for Dad this past week as he has continued to progress. I agreed on Wednesday. He said one of the main changes for us right now is daily visits instead of just two. Has anyone else found it made a difference in support you received when you updated your loved one's status in this way?
I also keep hearing different points of view within our assigned hospice team on the topic of eating, which is very painful for me since Dad's appetite and taste buds have been a challenge that have contributed to his decline for months, not just now. One nurse says, "Don't want to say you are starving him" but said to offer him soft foods to "keep his strength up." IF ONLY. The other says to of course bring what he asks for as it happens, and to remember his body is leading the way, so the few bites of food he has had in recent weeks are signs of where we are headed. 🤦🏻♀️ And social worker just said sometimes people come off of the imminent list, soooo. Where even are we?
All I am trying to do for my usually sweet and loving but often now cantankerous 88-yr-old dad is respect his wishes, keep a peaceful vibe in his house, and honor the process. I though having more visits would feel helpful, but as of this weekend, I'm not so sure.
When stepmom was terminal in MD Anderson cancer center, she wanted a shake. The staff wasn’t too keen on it. By golly, I got her that shake, and she was pleased with the two bites she took.
You must remember that the hospice nurses are human just like the rest of us and they are not God.
And try as they might to predict what is going on, they often get it wrong.
My late husband was under hospice care in our home for the last 22 months of his life, and I was told several times before he actually was dying that they thought the end was near, but he proved them wrong.
And even when he actually did start his dying process, his nurse said that he would be dead in 3 days, and yet he lingered on for 41 days.
And because hospice couldn't get my husbands pain and agitation under control, he was going through a bag of liquid fentanyl every day for the last 2 1/2 weeks or so and so the nurse had to come daily to change out the pain pump. That only took about 15 minutes or so and she would check my husbands vitals and leave.
Looking back on it now, if my husbands pain pump wouldn't have had to been changed out daily I wouldn't have had them come every day towards the end, as they didn't really do much other than disrupt my day.
So let your dad direct you in whether he wants to eat or drink anything, and never force either on him. And if you want peace with your dad in his final days, tell hospice that you will call them if you need them, as they are available 24/7.
Just because they offer to come every day doesn't mean that you have to allow them to. You do what is best for your dad and all involved.
Wishing you the very best as you take this final journey with your dad.
You are never stuck with the providers they send. They are there to make this easier for patients and family, not harder and laying guilt.
If you do find that food and esp. fluid makes your Dad more alert and the signs of death go back, then, yes, so will the visits.
As with all things, this cannot be predicted and is best taken day by day.
Such food and fluids as are ASKED FOR should be allow to a dying patient, of course. Do know that even minimal fluids only will greatly prolong things by days in many cases, and in a few lead to more difficulty with secretions.
Again, this is to be taken day by day.