I know what it means when they say a patient is going to be admitted to hospice & sometimes they get a little better & can be discharged but why does it happen repeatedly??
I'm wondering if the initial diagnosis is wrong (meaning the person isn’t as near death as they say) & they are misdiagnosing them by putting them in hospice when they’re not that sick..
It's nerve-racking to get this diagnosis just once, but to have to deal with it repeatedly is very bad also.
Though she was incurable and the facility also focused on palliative care, she improved so much that they released her and she went home. A week later, they thought they should re-admit her, but she chose not to move again and died soon after.
In old age, it goes like that, too. Never know when someone is getting close to dying or not.
And depends what state you're in regarding the hospice.
My mom had over 20 near-death experiences before she actually died. She was on *in-home* hospice for over a year and a half.
She always looked normal and could walk/talk, so people didn't understand...
She was evaluated at every 6 months to continue or not. There was a little weight loss each time, and the "episodes" continued, so they kept her on...
If you are taking her to a hospice facility, then that may be a totally different story...
If there is no decline then they can not be recertified.
This is why as a family member and a caregiver you should document all changes you see or are told about.
The person used to be able to talk in sentences...now it is a few words.
The person used to be able to be understood when talking ...now it is mumbles or now it is just sounds.
Weight loss. You do not need a scale for this, clothes fit looser, the belt has moved a notch or two.
On the other end, Weight gain if it is due to fluid retention or other medical conditions related or unrelated to the diagnosis.
Not being able to stand on their own when they used to be able to stand
Sleeping more, used to sleep 9 hours but now takes a 3 hour nap mid day and still sleeps 9 hours at night.
Choking or coughing when drinking. Or used to thicken drinks to "nectar" thickness now have to thicken to "honey" thickness.
Any little change you see should be documented and told to the Hospice nurse when she or he comes to do the recertification.
They want to keep someone on Hospice they do not look for ways to discharge someone so every bit helps.
And you are right it can, it is frustrating to be discharged from Hospice. You get used to the help, the education, the support and it is hard to do this alone. So if your loved one is discharged as soon as it is possible to get them back on Hospice make the call...again.
I can't tell by your question. I guess it would be scary either way if no one has spoken with you about what is happening.
Are you or LO being admitted for the same illness both times?
The way I understand it is that just because someone is allowed hospice doesn't mean the you have to die in six months and just because you get discharged doesn't mean you're cured.
I think it's great that you are reaching out but it seems like you really need to ask your doctor's more questions. You shouldn't have to be so scared or confused especially after the second time.
As another noted, don’t get caught up on it being the end, but the quality of life and family support, and comfort.
This is part of the definition:
Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.
So Hospice services are no longer just end of life but can be used almost indefinitely.
I have personally experienced the “hospice bounce” with a loved one and was so grateful for that glorious, precious extra time. My loved one wanted very much to survive, she had a very strong will to live and was defying science.
Now that she is gone, I look at those days with great appreciation.
I know now that it is a scary time and wish you the best. You will feel somewhat deserted. Your true friends and reliable family members will see you through this storm and you will survive.