The Road Ahead

On Monday we went to see Dad's neurology NP, and she was very helpful. She made it clear that while the facility that did Dad's respite care is wonderful, it's assisted living, so it doesn't do nursing care, and nursing care is clearly what Dad needs now. The question of whether respite care was what caused his dramatic decline is really impossible to answer. Certainly it was a contributing factor, as all changes are. But the next moment she said, "But you needed the break, you all needed to go on that trip. There is no question about that. As I look at my record of all the phones calls regarding his wakeful nights, you had to take the respite care. So even though there was decline, there is clearly benefit."

She also said that nursing homes do nursing care, that is their business, so in this way they are different from assisted living and memory care facilities. I think she was trying to reassure Mom that if Dad were to go to a nursing home he wouldn't end up in the same shape he was in at the end of respite care. This is in answer to Mom not being able to shake the devastated guilt she felt when she first saw Dad after respite care. She is so afraid that if he goes to a nursing home, the same thing will happen. That basic care will be neglected. The NP understood her concerns, and again stressed that nursing homes are very different places. She told us the nursing home we just applied for is a highly regarded one, and that her office works with all of the dementia patients there.  She tried to help us keep certain goals in mind for Dad: keep him safe, keep him comfortable, keep him happy. She introduced the concept of doing less rather than more if it would make everyone's lives less embattled. So for instance, wheeling him to the dinner table rather than insisting that he stand and move to a regular chair. Not trying to make him walk each day. Keep him safe, keep him comfortable, keep him happy.

For anyone who has read Atul's Gawande's "Being Mortal," this advice seems to contradict Dr. Gawande's philosophy of living well to the very end. It took me a while to remember that the book is mainly about cancer patients who try an endless list of treatments and trials to stave off the inevitable as long as possible. It's also about traditional senior living homes that use every and any measure to keep residents safe at the expense of higher quality of life. But if my memory serves, this book doesn't spend much time discussing long term care for Dementia and Alzheimer's patients. So, maybe that's another beast altogether. I've read a couple of books written by caregivers of spouses with Alzheimer's. Their stories began in the early 90s, when not nearly as much was known about the disease, and resources available today were unheard of back then. Their stories are every bit as gut-wrenching as someone dying after a long painful battle with cancer, but for very different reasons. For someone in my generation the 90s seem like yesterday, yet it's 20 years ago, a lifetime in the area of research. Though we have still not yet discovered a concrete cause of Alzheimer's and other types of Dementia, we are at least making educated guesses and pointing to distinct factors that in combination can put someone at risk. Yet when it comes to long term care, we are still in the wild west. Every patient's disease seems to manifest and play out in individual ways, and so the care their loved ones give them is highly individual as well. A church friend whose mother recently passed away after a long battle with Dementia, couldn't understand how our family could take the day in day out ordeal of caring for Dad. She thought it must be a cultural thing that motivated us. Well, maybe it was, at least initially. But I'm slowly getting to see other caregivers online and I don't think they are all Asian. Many families, for one reason or another, keep their loved ones home. Sometimes it is their personal choice. Other times, they simply cannot afford a different option. As a country we have not yet come to grips with the the cost of long term care for Dementia and Alzheimer's patients. As Dad's PCP remarked, "if your dad needs more meds, or a test, or surgery, Medicare will cover that. If you need a wheelchair or hospital bed, they will cover that. But home health aids, daycare, something to keep life comfortable and interesting? No, they won't cover that." And that is a problem, because we don't see a lot of these things as medical needs, the way we do medication and other clinical interventions. And until we do, many families will be going through this caregiving business in isolation.

When we told the NP we applied for a nursing home, she nodded and said, "Good. The next thing you do is, every two weeks you call them up, and make yourself known to them. Say, 'Just wanted to follow up and ask how my application is, because we're ready.' Because you don't know how long it will be, and if you do nothing, you have no idea where your application will end up. And as soon as they call you with an offer, you say, 'Yes, thank you!'" That took me aback a little, because I wasn't sure if Mom was ready. She was still thinking Dad would stay home until he didn't know us anymore, because she couldn't bear the thought of him knowing us, but going to a place where he knew no one. But the NP left us with a final thought. We must never let Dad and the disease consume our family. It must never take over. We must also constantly ask ourselves, are *we* safe? are we comfortable? are we happy? "You two are doing a great job. But you have to do what you need to do (looking at me) to be a happy mother, happy wife, happy daughter. And the same goes for Mom."

As the week has progressed I *think* Mom is getting more ready. The process of letting go is complicated, and so I ask for prayers as we continue with life, being open to what lies ahead.