A year and a half ago, my sister and I, with our mother's agreement, decided it was time for Mom to be on hospice care. We knew at the time that it was the right move to make, largely because her pain management had become so difficult and we know the marrow/blood cancer was rapidly spreading. She didn't want any further treatment and made it very clear that she wanted no extra measures taken for anything and was as strict a DNR as there could be. At that time, the doctor said we were probably looking at 3-6 months. That was 16 months ago.
After accepting the realization that our time was limited, each visit became more and more significant. I live about 3 or so hours away from Mom, so came down as often as my teaching schedule would allow. I knew she was being well taken care of at home because my sister, Katharine, had already been living with her and taking care of her for several years by this point. As we went through the those 3-6 months they prescribed, we talked, went through old letters, sorted through things, organized all the planning, etc. As I say, each visit was now more significant. Neither Katharine nor I liked the idea that we would now be the "Oldest" ones in the family, the ones at the top of the tree, but we were accepting it.
Then, the 6 months passed and Mom was about the same. Yay! We were glad to get her for longer than expected! That's when the waiting really first began. We knew each day was borrowed time so we began the constant roller coaster of her decline and rally. Each phone call from Katharine was answered with me saying, "What's wrong?" I felt a million miles away knowing that any time could be "the time" and I might not make it back down fast enough to see her. Every visit might be my last, and I left with that knowledge and the sorrow of knowing that I had to leave anyway.
That six month point has now turned into an additional year. Mom has lived to see her 80th birthday last year and on the verge of seeing 81. She was able to see my oldest son, Ethan, released from prison and what we all hope will be the release from the prison of addiction. She was able to see my younger son, Asa, too, in fact, the two of them together, and has marveled at how he moves to his own drummer, but is doing just fine. She has held on as Katharine and I each had trips to various places and told her she couldn't "go" while we were away. We have each gotten what we knew would be our last "Happy birthday" from our mother and our last Christmas together. Her decline has continued, at times quite rapidly and then a long plateau. And here we are, 16 months after they said three to six, and in the early days of 2020. Nobody thought it would be this much time, and nobody could have treasured it more.
However, 16 months of waiting has taken a toll on all of us. Mom has been ready for all of this time, but clearly, she hadn't finished her business here. Spiritually, she has been completely at peace and looking forward to what lies beyond and the loved ones she knows will be there waiting for her. She is tired of the pain, tired of feeling like she doesn't offer anything to life anymore, tired of being in her bed, tired of being confused, tired of not being able to concentrate and do things . . . tired. Each night, she's prayed that she would slide peacefully away. We want nothing more for her than that peace and the arrival in the new home she's long coveted.
I feel selfish in writing about my own feelings over the last 16 months, especially over the last year, and even more so over the last few months, but it's the part I need to say and I think is understandable. It's the waiting . . . the edge of your seat . . . the wondering . . . the praying for what she so badly wants and can't seem to get . . . the feeling that I should be doing more for her or my sister . . . the feeling that I just go back to my world and work and am disconnected from it, but never, ever am. I'm constantly anxious, sad, hopeful, and waiting. If it were completely up to me, I'd keep Mom with me for years to come in a healthy, active life, but it's not up to me and she won't ever be that way. I accept that. I accept that it is time for her to leave us, and I have come to terms with wanting that for her. I pray daily that she will have that release from the pain and exhaustion. I can't imagine what else she needs to do in this world. She has given so much to so many and even in these last days has made sure she has covered all her bases.
So here we are . . . last Monday, Katharine called and said the doctor indicated that she was at the end and I should come. Mom also got on the phone and said she wanted me here, so down I came. I've been here for almost a week and she has had days where she was awake and days where she slept. We've ended each night with a deep, heartfelt goodnight and a prayer. The other night she told Asa that she was going on Friday night, and there certainly seemed to be indications that she would, but then she had one more person she wanted to see so today, Saturday, she woke up. She's like that, meticulous in her responsibilities even if they are only perceived responsibilities. She wants to make sure she does things right and orderly yet she's never done anything in an ordinary way. It runs in the family. If there's a backwards way or unusual way to do something, we find it. Anyway, she now thinks that her list is complete and wants desperately to fall into a deep sleep from which she will not return to this world. I continue to pray for that for her. As much as we always need our moms, we can't have them forever. I will leave in a couple of days and head back to my other world one way or another. I pray she has slipped on by then, but if not, I know this will be my last goodbye. I take many, many treasures with me in my heart, but that won't make it any easier to leave her yet again. The only difference is knowing it's the last time. And, I will leave . . . waiting.
