E- Both T and G receive medical visits in our home. The team is composed of physicians and nurse practitioners for both of our parents. T also receives palliative care visits from another team of healthcare providers. Both groups communicate closely so the visits are alway thorough and clear plans of care are relayed to us following each evaluation.
The last palliative care visit included the physician spelling out for us the 'turning point' from palliative care to hospice care for T who is slowly declining each day. He said once T can no longer hold her head up and she stops smiling, then we transition her to hospice care. These 'markers' are so important to know and recognize because we all want a peaceful ending and hospice will positively provide that for us.
Presently T is 100% care. She does not stand on her own at all, we transfer her from the bed to the chair. She is showered daily in a shower chair and then dressed. She may follow you with her eyes depending on the day, but she uses few words which generally DO make some sense when she says them. She requires a caregiver for all meals because she no longer feeds herself. Periodically she clamps her mouth shut and refuses to open it. I have a solution which works for now...but may not continue to work in the future.
So...how close are we to a smile free face and inability to hold her head up? Who knows...but I do know she can still wink because we were winking at one another over dinner on Sunday night. She is still smiling, especially when kids are around. Last night I was playing with her and Therapy Baby (Jr.) and she was grinning ear to ear. I was so happy to see that familiar smile! She didn't have any words for Jr. even when he grabbed her glasses off of her face. She just kept smiling!
So we press on along the palliative path for now! Meanwhile G is still shoeless when necessary and on the run when accompanied by a caregiver.