In yesterday’s post, Annie, who is both a family caregiver and a professional Home Care Aide, with broad experience in elder care, talked about the situation her family faced in caring for her father, during hospice.
One of the points she made, in Part I, was that if she and her brother had not been available or able or willing to provide certain services to her father that are considered to be “medical” in nature, she would have wanted a trained, professional caregiver to be able to provide them. To continue, …
Since my father early on had a PICC line (peripherally inserted central catheter, terminating in a large vessel near the heart), hospice arranged for [my brother and I to be trained] in maintaining the line and administering medicine through it using sterile techniques. When he was no longer able to eat or drink, [hospice] trained us in preparing TPN bags (total parenteral nutrition administered via IV) using sterile techniques – extremely complicated procedure – and how to use a kangaroo pump. When his condition warranted a J-tube placement, they trained us in maintaining the line, measuring changing medication dosages and administering medication via the tube. This was done several times during the day, and the dosages of various narcotics and relaxants often varied daily (per hospice nurse direction), as his condition changed.
They also referred a dietician to work with us early in the disease, with lots of tips on how to get the most calories in the gentlest form (we had a contest to see how many calories we could put into a milkshake) in order to sustain his weight for as long as possible.
This we could do, because we were family and there were not the liability issues. According to hospice, this sort of situation where families are trained to such an extent rarely happens… Without medical training, most people are intimidated, and rightly so. But… if the risk is considered acceptable by the patient and the family by all knowing and trusting the basic abilities of the individual being trained, there would not be the need for this to be restricted to family members, as long as the person being trained had the confidence of the training agency, as well.
I think that if you journey with a beloved father to the end of his life, you do what you need as you go, and you learn as you go. I don’t see why somehow this couldn’t include training someone outside the family where everyone was in agreement that all one could do was one’s best…
The fact that [my brother] and I could be trained in caring for my father outside our fields of expertise gave him weeks more of sunsets over the lake and evenings with my mother in his beloved home. If he had not had us, would he have chosen the best chance for staying at home using the new skills of a trusted individual? You bet. If there isn’t a mechanism for such an arrangement, there certainly should be.
Annie’s father’s situation was at an extreme, obviously, in terms of being on hospice. But, so were the services that he needed.
If it makes sense to a loving daughter that a professional caregiver could have been trained to do what she did, how much easier is it when we are talking about services such as blood pressure or temperature or even glucose testing. There are so many “medical” services that a well trained caregiver — family or professional — could do, that telemedicine cannot yet handle and that there is no financial or practicable way to get an RN out 2-3 times a day to handle.
The dialogue is under way, and thank you Annie for a huge boost to it. We need a better partnership between medical and non-medical care providers. Let us know what you think.
Best wishes, Bert