Last Friday Dad was taken off hospice. 9 months ago when we agreed to hospice and palliative care, we were told that in the event that Dad stabilized and seemed to be doing well, he could be taken off. We nodded to all this, but without thinking it could actually happen. We started preparing for the eventuality of his passing. Mom made arrangements with a local funeral home, and purchased a plot in the town cemetery. All this was to avoid, "having to make huge decisions while grieving." It seemed like prudent advice at the time, and looking back I don't think we have any regrets about pre-planning. But it meant that we were in a certain head space regarding the near future.
Well, against expectations (though I'm told this is normal), Dad has not only stabilized, he has "Plateaued," an official term used by hospice agencies to mean that the patients demise is no longer imminent, or even within projection. I was not fully aware of the fact that his term was actually up back in December, but the hospice nurse had examined him and referred him for another 60 days. During this time his weight has remained more or less consistent, and his appetite continues to know no bounds. As long as someone is there to feed him, he will keep eating. His color is pretty good, and so is his breathing. The only issue that affects his care is the fact that he has become incredibly rigid. During care he will get so tense that it is very difficult to move him and hold him in place. One morning the nurse who went to wake him up reported two large bruises on his torso, under his arm and on his back. The hospice nurse examined him and determined that because of his rigidity he was pushing back against the LNA's hand while she was cleaning and changing him. This can cause a lot of bruising. So his care has been modified to the requirement of two people at all times.
Mom kept hanging on to the hope that an outside evaluation by another NP might extend his his hospice care a while longer, but even though the NP herself was hopeful, in the end the concrete facts didn't bear out the need. Here is where we received a lesson in hospice care. It was created in the late 60s for the comfort of terminally ill patients who were projected to live for 6 months or less. If I think back to that time period, I'm pretty sure that patients with Alzheimer's and late stage dementia did not make up the majority of patients put on hospice. Though the demographic of patients may have changed, the parameters of hospice qualification have not. As soon as a patient has reached a "plateau," they are deemed no longer, "dying," and taken off. "This is not the way we want it!" exclaimed the NP. "For these patients we really want a term of 2 years, because Alzheimer's is so unpredictable, yet it's obvious they need the comfort care, as well as their primary caregivers!"
The NP talked about how Dad's weight was steady and his appetite good. Mom exclaimed,"Well that's because I come to feed him every day! He needs someone to feed him or of course he wouldn't eat!" This is when I really appreciated the NP's empathy. "I know it feels like you are being punished for taking such good care of your husband. We hear this all the time. People take care of their loved ones well, and the loved ones hang on or improve, but then the benefit disappears even though the family is still in need, because the love one is still terminal. This system doesn't work well, it penalizes families for good care, which makes no sense at all."
It took us, and especially Mom a few days to process the change. No longer would an LNA come during the week to feed Dad lunch. This caused Mom not a few moments of angst. "Should I start feeding him lunch as well?" I usually try to let Mom come to her own conclusions, but in this case I felt strongly that adding another feeding to her schedule (she already does this on weekends) was not in her best interest, something she doesn't tend to think about. "I really think you have to let this go. You have things scheduled during the time Dad eats lunch. Like your exercise class, doctor appointments right before or after. Do you really want to take them out? Dad will be fine with the R center staff feeding him. You still feed him breakfast and lunch, that's two good meals a day." She finally decided she would feed him lunch on Tuesdays, and in exchange she wouldn't go in for lunch on Sunday. That will free her to enjoy coffee hour after church and have lunch with us.
Of bigger concern was some of the physical things hospice paid for. Dad's special chair, a mattress that prevented bed sores, an oxygen tank that was connected to his cpap machine for maximum breathing during sleep, these were all covered by Medicare under the hospice agreement. We are so thankful that the hospice nurse negotiated/arranged for all of these items to remain with Dad and to be paid for by R center. The NP told me it often happens that the facility will pick up the fee because they see it as necessary to continue caring for a resident.
It's only been a week, but Mom has adjusted pretty well. We are on vacation week, and yesterday she went shopping with me and the girls for special outfits they needed. For 2 hours she helped the kids try on dress after dress, shoe after shoe. It was the first time she has really interacted with them in a very long time, and we enjoyed the normalcy of it all. We even took time to visit Dad while he was at the tail end of lunch, by request of Elfgirl, who normally hates going to R center. As we were leaving the kids talked about missing having Akong at home, something that didn't occur to me.
We continue to make financial arrangements, but otherwise we look now at the future as something that could stretch out for a long time to come, or change very shortly, in an instant. And we are okay with that.
No comments:
Post a Comment