Being there

I read obituaries with some regularity. Lots of people report that a loved one died “surrounded by family” and sometimes even close friends. I did not include that tidbit in Mom’s obit. But I was there when she died. And so was Patrick. And, in a stroke of bad luck for me, so was the hospice social worker. She appropriately stepped away after giving me a small hug.

I think about Mom’s actual death, and that whole day, frequently. I had mildly complained to a hospice nurse earlier in the day that I hadn’t heard a peep from the social worker, which surprised me since Mom was actively dying. She had assessed me in two long phone conversations, so I just assumed that once the actual death was upon us, I would hear from her again. And I think it had been a kink in the system – she hadn’t been told that Mom was near the end. So she came in late on the afternoon of Oct. 27, shortly after Patrick had arrived after work. I had been there all day, save for my decision to slip away for a haircut. (It was a risk to leave for that, but I needed that haircut. And it worked out.)

It was a lonely day and a somber day, sometimes. I was focused on Mom’s breathing, wondering which inhalation would be her last one. I stared at her for hours. I chatted with people who stopped in – Alz center nurses and aides and hospice nurses, mostly. We were sort of jokey about how Mom was hanging on, doing it her way, maybe even being stubborn. I engaged in a very stupid Facebook discussion about Donald Trump – I have learned not to take the bait, but I was weak that day, and just generally worked up, so I had no tolerance for opinions counter to mine. I brought up Medicaid in the discussion, and Alzheimer’s disease. That is a regret I have about that day, that I bothered to engage someone I don’t know about a subject we will never agree on.

And then it was 5 p.m., and Patrick, the social worker and I were chatting. And Mom’s hand moved, catching my eye because she had been immobile for days. The hand above her blanket just lightly flapped, twice maybe. Her mouth opened just a little bit, and then closed. “Is that it?” I said. It had to be, I thought. We didn’t see any other signs of breathing. I think the social worker left to get a nurse. Patrick and I cried, and hugged. Why am I crying, I thought. I have been waiting for this to happen. It was inevitable. Her struggle was over. My struggle was over. But it was as involuntary as crying has ever been – there was no holding back. Nurse Bobbi, who had overseen Mom’s care, came in to confirm. Another nurse confirmed Bobbi’s confirmation, a requirement. “You stay as long as you want, for as long as you need to,” she said.

I touched Mom’s hand and kissed her face. She looked so terrible. Her skin had mottled – it looked like blood had collected in her hands. The area around her mouth and nose had turned gray. These are things that happen, I had been told. I understood that. But I confess that I am not pleased about my last view of Mom’s physical presence. It is hard to wait for a person to die and witness it. Then again, it was a privilege to be present for that. I’m glad she was not alone, even though she wouldn’t have known she was alone (I assume, anyhow). But it is such a private event in our lives, to die. Do we want people to be looking at us when we are our sickest selves? I know appearance should not, does not, matter at all. But it takes the human body some time to shut down, and what happens to the body is unfortunate, to put it mildly. So I remain torn about whether I was lucky to be there. Patrick and I didn’t feel a need to stay, to keep seeing her that way. We left rather abruptly, and no one judged. It’s just what was right for us. I had to revisit her appearance the next day, to look at a photo taken after her death at the funeral home to confirm that the correct person would be cremated. Of course, a necessary step. All that means that now, more than ever, I enjoy looking at photos of Mom to put that last view of her face out of my mind.

And after all that time, all this blogging (almost 7 years!), her death still felt so sudden. This was it? This was it. It was over. “It” being caregiving, sickness, stress, sadness, but also laughs, smiles, holding hands, hearing her say, “I love you,” taking walks, sharing root beer, her sweet tooth. Her life. After 10 years of her illness and my caregiving, she was gone. Just like that. Somehow, it felt too soon. I hadn’t had time to contemplate what it would mean for her to be gone physically. I had always assumed her final decline would be prolonged, that I would spend hours by her side over the course of weeks or even months, feeding her and trying to be a comfort to her. Instead, that period really last only one week. And, even though I have an odd and lingering sense of loss about that time not spent with her, her rapid decline was a good thing. A very good thing.

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3 comments so far

  1. jgemacher on

    I’m sorry to hear of your mom’s passing. I’m sure you weren’t ready for the finality of death. I know I wasn’t and even after a year and some months without my husband it still seems surreal that he is gone so completely. Best wishes to you as you carry on like a good soldier now.

  2. momsbrain on

    Hello, jgemacher. I’m very sorry about your husband – and that it has already been more than a year. A mom is hard enough. A spouse – well, I can only try to imagine how hard it was from beginning to end for you. And still. And you are so right. I thought I was prepared for Mom’s death – that I had been for a very long time – and yet when it happened it was quite a jolt to my entire way of being. Sending good wishes and warmth to you, too. Thanks for commenting.

  3. Jan Orosz on

    I hope you are recovering from the long and enduring journey that you have been on and I thank you for sharing your experiences. When I read this, our family’s journey came rushing back. Perhaps you can join in my efforts to raise awareness of http://www.CureAlz.org https://twitter.com/CureAlzheimers https://twitter.com/RudyTanzi 100% goes to research. We need to find a cure. Since you read obits, wouldn’t this be a good place to mention contributions? @RudyTanzi @curealzheimers


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