Whenever I see the name of mom’s facility on my cell phone when it rings, I automatically wonder what happened. She is in a great facility where she is well cared for, but in the past year there have been a multiple falls, and a couple of minor injuries. Two weeks ago, at 10pm when they were doing bed checks, they found mom on the floor between the bed and wall, and she had hit her head on the AC unit in the window. They took her to the ER and she did have a small hematoma, which meant they kept her overnight to make sure the bleeding stopped. So a couple of days ago when the facility name came up on my caller ID again , I braced myself and answered. But I was caught off guard when the nurse said, “The doctor wrote an order for hospice for your mom.” What?? Hospice??
Hospice is a wonderful concept of care. I worked in hospices for almost 20 years early in my career. I love everything they stand for and all that they do for their patients. But hospice is the end game. It’s the period at the end of a life. It’s the final care that people get before they die. I just didn’t realize we were at that point yet. But hospice really isn’t about dying, it’s about living. It’s about helping people live every moment to the fullest they can before they succumb to the disease that is taking their life. It’s about managing symptoms and keeping people comfortable, enabling them to enjoy one last visit with grandchildren, one last family vacation, one last look through the photo albums, one last trip down memory lane.
Hospice is also a wonderful benefit under Medicare. They are able to provide medication and equipment, but most importantly extra eyes and ears on mom as they manage her care. The facility she is in is licensed by the state as Assisted Living, which means they are not allowed to have rails on the bed, or anything that might be considered restrictive. However, with hospice in place, they are able to order equipment that the facility must use. They got a hospital bed that is basically on the ground, even though it’s hard to tell in the picture, so that if she falls it’s not far to the floor. But the bed also has rails. And she now has a Hoyer lift to help get her in and out of her bed, wheelchair, on the toilet, etc. I am beyond grateful for all of it!
The intersectionality between the practical-ness of care needs and the emotional processing of it can be difficult. For me, that’s where faith comes in. For my mom and her situation, I see hospice as a Grace. A gift from God. As much as I love mom, and will be heartbroken when she dies, there is no quality of life for her at this point. Warning: the conversation about the ugliness of this disease is about to get very real right now. The confusion, hallucinations and paranoia created by Alzheimer’s has gotten significantly worse in the last six months. The confusion is manageable. The hallucinations and paranoia are not. A familiar story for the last year, that I hear every single time I visit mom is this: “Julia, they put me out in the rain, and I was standing on the sidewalk for two days and it was raining. No one would help me, and I had no money. I was scared.” I have tried saying things like “Mom, I know that seems very real to you, but it didn’t really happen.” And you know how well that goes over. So now I just say, “I’m so sorry you experienced that mom, I’m going to look into it for you.” But can you imagine being locked up in your brain, and you really think that is happening and no one is helping you? What a horrible thing to experience 24/7. For the last six months, this is another story I hear every visit: “Julia, they laid me on this table (pointing to the dining room table) and got out a big knife and cut all my limbs off! They were carving me up!” Again, how horrible for that to be your thought all day every day. Medication doesn’t help. Therapy won’t work. And it feels de-humanizing to allow someone to live with that level of graphic, all-consuming thoughts. She thinks everyone is trying to kill her, that everyone hates her. And no amount of arguing, re-directing, or coaching changes that. It feels helpless and hopeless as a caregiver. I don’t believe in euthanasia, but even if I did, it’s not legal in Ohio. Don’t hear what I’m not saying – I don’t want my mom to die. But I also think it’s cruel that she lives with this ugly disease that is making her life miserable. So when the doctor recommended hospice, I was very ok with that. A bit surprised at the timing, but still very ok. Soon she will be with God, and my dad and Bon-Bon, and her brain will once again be healthy, and she will be free. Until then, we embrace every moment, every hug, every goodbye as if it was our last, because now it just might be. And if her death comes a bit sooner that I was hoping for, I think that’s ok too. That will be a gift from God.
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