There are always new things to learn along this journey. From things like nuisance bleeding (which was really scary!) to how healthcare systems work and everything in between. Some how it makes me want to plan out every little detail for my kids should something happen to me. And maybe that’s not such a bad idea when you really think about it!
Anyway, today we had our weekly visit from the hospice nurse and I learned something completely new and frustrating. I haven’t done any research on the issue as yet, so I’m just writing off the cuff here. For one thing, Mom has to be re-certified for hospice every 60 days. (I already knew that.) The good news in that I suppose is that the doctor comes out to see Mom. We know that Mom is getting great medical care and we don’t have to drag her out in the cold or wet. That’s a real plus. On the other side of the coin though is the fact that there needs to be constant decline for re-certification. I understand that. At the same time, it’s frustrating to know that we come so far along the journey and nearest the end, if we reach a plateau, all the help comes to a screeching halt. It’s not like the patient is “fine” “doing well” or any of those things.
Currently the healthcare system is designed to get people on hospice when they need it. Once they are there, the road to continue care seems to get smaller and smaller. One of the criteria for Mom is arm measurement. It hasn’t budged lately. So how small can a boney arm get?! Isn’t there an endpoint? It already looks like skin and bone to me. I don’t want it to get any smaller! She will evaporate if it does!
Honestly, I think my frustration with the way this system works comes from my own insecurities about handling end of life issues. It’s comforting to have a nurse come in every week to check on Mom and just reassure us that we are doing the right things. Today when I heard that in Mom’s present state she may not be re-certified, I commented that it seems like we are giving Mom too good of care. Mom is well fed, clean and deeply loved. We make sure she is comfortable and as content as she can be given her circumstances.
She’s not covered in sores or smelling bad, her room doesn’t smell like a urinal and she doesn’t look like she is at death’s door. We do our best to provide an uplifting, pleasant environment and keep her as healthy as possible. Our nurses have been instrumental in our success. It is because of their guidance, suggestions and example that we have been able to provide to Mom the most excellent care we can give. Our hospice care nurses have been an absolute God send to us and we are extremely grateful to each of them.
Mom hardly speaks, she doesn’t move on her own, we use pillows to prop her up in the wheelchair at mealtime. She needs help feeding herself and we tend to all of her personal care. She’s contracting more and more every day. It’s to the point that when I looked at her from the back as she sat in her wheelchair I couldn’t even see her head at all. Her head hangs so low that it’s amazing that she’s able to swallow her food. I imagine her throat has to be at a 90 degree angle. She’s still in there somewhere, but this body of hers is literally curling up.
Mom’s re-cert won’t come up for five weeks. A lot can happen in that time, especially on this roller coaster journey. For the next five weeks we will have the peace of mind of knowing that we have help ready at hand. What a quandary! Of course I don’t want Mom to have to be in constant decline to maintain hospice care. I also don’t want to lose the guidance of our nurses.
I’m learning to let go of outcomes and trust God for what’s best. He’s equipped us to do this and ultimately He will equip us for the very end game as well. I’ve heard it a lot lately: God doesn’t call the equipped, He equips the called. So I’ll try not to fiddle with the fifth week from now. It’s in the future and none of my business at the moment. For now, it’s enough to do what needs to be done today, even if it’s only just sitting with her while she sleeps.
We may be getting to good to keep Mom on hospice care, but one thing is for certain. We are very, very blessed to be getting that good and we won’t compromise our level of care. She’s our Mom and we will continue to respect, honor and love her with the best care we can muster.