Tomorrow night is Michele’s Hebrew Deathiversary AKA her yahrzeit. In some ways, having a second day to remember her is just reliving the saddest day of my life over and over again, but then I think about her every day. In many ways, when you are a caregiver, you are grieving in what is known as anticipatory grief. You grieve for how your loved one was. You grieve for the fact that time is limited and you are anticipating the worst day – self-explanatory. You are grieving for the pain that they are feeling, wishing you could bear some of that burden. Finally, you are grieving life as you once knew it.
When D-Day comes (yes, Death Day), you are never prepared. The emotions and how I see things changed with each death that I’ve experienced. My father’s death was different. When you are estranged, you mourn for what might have been not for what actually was. Luckily for me, my mother forced me to see my father a few months before he died. I felt horrible for him, but my father hadn’t changed and in my mother’s words, at least I have the peace of mind of knowing that I made the right decision so many years before.
When my mother died, I felt so much more. Many people assumed that I felt relief that my mother was no longer in pain. Externally, I agreed. Internally, I’ve never felt so lost in my life and wished that she was still here. I watched my mother suffer more than anyone should. I fought so hard for her to live, but one day, she looked at me and said no more. She was in so much pain, and I looked back at her and said “OK Mummy, no more.”
She still wouldn’t take more than Tylenol at that point but the end was near and I forced her to speak to the palliative care doctor about a self-dosage pump for morphine. She told me that she hated me that day. I told her that she could hate me, but I was doing it because I love her. Later on, I asked her if she meant it, even though I knew the answer. She shook her head. She also told Michele to “eff off” and she didn’t mean that either.
We then had to carry out what we knew her wishes were. I did what the doctor told me to do. I posted the DNR signs in conspicuous locations. I told people not to cry in front of my mother. We all told her that it was ok to let go. We were all in agreement on everything, but I was the one who slept with her at night to make sure that she was medicated properly.
That week I learned what so many caregivers knew before me – what it’s like to hold someone’s life in your hands. To be carrying out the wishes of my loved one but to feel so sick with guilt, that I didn’t know what to do with myself. I called to make sure that there was a spot at the cemetery where my mother wanted to be buried, and the woman on the line asked if I wanted to speak with the Rabbi. For the very first time in my life, I needed to. He was wonderful. He asked me a bit about the situation, and I told him what was happening. I told him about the guilt that I was carrying – how could I bear this responsibility and I needed to know what our faith said about this. I’m not religious, but there had to be some guidance.
I’ll never forget what he said to me, “Jill, I want you to listen to me very carefully and really hear what I am saying to you. Our laws are very specific that we cannot take someone’s life. What you and your family are doing by carrying out your mother’s wishes isn’t the same thing. It’s a mitzvah (basically a good deed). The mother that you love, and that you want, will never be coming back to you. You are helping her die with dignity and that is what our people believe in. The dead must be treated with dignity, and while you can’t hasten death, you can make it as comfortable as possible for your mother while she is living.”
For a brief moment, that helped, then once my mother died, I worried about everything. Michele was amazing. She was going through the same thing, but she had to bear the burden of chemotherapy and her own guilt about what she thought she was doing to me. She always reassured me when I questioned if I had done enough, cared enough. She helped me get through the guilt saying that we did the right thing, and that there was nothing more that I possibly could have done.
The day that Michele died, I had to carry out her living will. On five occasions, I had to repeat Michele’s wishes. Once to the EMTs, once to the ER nurse, once to the ER doctor, once to the palliative care nurse and once to the palliative care doctor. I asked the ER doctor what he would do if it was his loved one, and he said, “Your sister is very sick. She may live one or two days more if she’s treated and if it were me, I would keep her comfortable, which is exactly what you just told me to do.” And that is exactly what I did – repeating what my sister’s wishes were two more times. Silently dying inside each time I had to say it, but logically knowing that I was doing the right thing.
The same Rabbi who was so helpful when my mother died and who officiated at her funeral was also going to be at Michele’s little funeral. I reminded him of what he said when he asked me how I was doing and he told me that once again, I did the right thing.
Part of the guilt that I feel is because I survived and Michele didn’t, although I know that she wouldn’t want me to feel this way. I know that she felt guilty that I had to take care of her, but I never wanted her to feel that way either – it was the greatest honour of my life. I wouldn’t want her to go through the loss that I’m going through now and she wouldn’t want me to have to go through the draining illness that chemo and cancer’s perfect storm causes. But there isn’t a day that goes by where I don’t think why her. My selfless sister would hate that and she would tell me that I did the right thing. She would also tell me to live my life which I’m doing. If you are the decision maker, always remember that you did the right thing too.
In a previous blog, I spoke about how someone once asked me what it was like to lose your mother, out of fear likely. what I said was: “It’s a ache in your heart that just never goes away. It is a nervous buzzing in your stomach that gives you a feeling of always being on edge. It is a lump in your throat that you cannot swallow away. You cry in unexpected places at unexpected times because you saw a mother with her child and it made you miss yours. There is the feeling that you are seeking something that you can no longer find. The best days are bittersweet because you can’t share your happiness with the person that would take the most joy from it. The difficult days are even harder because your mother is no longer there to comfort you. That is the best way I can describe it.”
She didn’t ask about what it was like to lose a sibling, because Michele was alive at that point, but here is the answer to the question that no one asked. “It’s a ache in your heart that just never goes away. It is a nervous buzzing in your stomach that gives you a feeling of always being on edge. It is a lump in your throat that you cannot swallow away. You cry in unexpected places at unexpected times because you saw two sisters together and it made you miss yours. There is the feeling that you are seeking something that you can no longer find. The best days are bittersweet because you can’t share your happiness with one of the people that would take the most joy from it. The difficult days are even harder because your sister is no longer there to comfort you. That is the best way I can describe it.”
I will never not miss Michele. I’m grateful to be here to remind people that she lived, that she was loved and to make sure that her memory is honoured. She was my hero.
Jill Of Some Trades 