Dredging up a year-old pastI was sifting through some old mail that I had sent out when I was at the pit of my despair, shortly after my mum was diagonsed with inoperable cancer, which had spread from its initial site as a polyp in her colon to an uncontainable scourge which was devouring her organs. It mostly stayed silent for more than ten years, which is the scary part. By the time she was ready for treatment, it was too late. She was shy of her 80th birthday when she died this past May 7. She had known she was ill only for ten months. In that sense, I guess she was blessed.After a deafening silence since then, for the past couple of weeks, my mother has appeared to me in my dreams. At first she looked terrible and was bedridden. But slowly, in the past few days, she has appeared to me more healthy, walking a bit more upright with every vision. Last night, in my dream, she came out and joined us while we were out shopping. She was dressed. I had not seen my mother dressed in a very long time, with the exception of two outings to the casino: She lived for the slots.So here is an entry from my e-mail, dated, "Sat, 31 Jul 2004 12:47:24 PM Eastern Daylight Time."Well, I've done it. I've finally hit the wall that I thought I was holding up for this past few weeks. My journey into the world of saying goodbye to my mother began just about five weeks ago, and it appears it is almost over.
This afternoon, the nurse who is assigned to my mother's homecare was in a car accident. She was injured and was in hospital before they sent her home tonight. This set off a series of mistakes which culminated in my mother's visit being neglected and anxious for three and a half hours while she waited for a nurse who never came. During that time, I spoke to some of you, I thought about all of you, and I called every single agency involved in this fiasco to get some answers, and also to let them know how furious I was about the situation. I did not receive one phone call. It was only after I began to poke around that I heard what had happened.
After leaving the third round of messages (it's a long weekend here), a car pulled up, and I met Linda the nurse, who only lives up the block, and only hear about this omitted homecare visit an hour ago, thanks to the confusion after the car accident.
My fortune was that Linda is a palliative care specialist. She took one look at my mother and I knew at that instant that she could give me the most objective and honest long view possible, so here it is. (She also understood that she may be in charge of my mother, with the other nurse possibly laid up for at least a week.)
My mother's illness has caused her to have a lack of appetite. My mother wanted to know when her appetite will return, and Linda was honest in a very frank but caring way and said, "Your illness is causing this, and you won't really have much of an appetite anymore." She suggested instead to drink Gatorade. A lot of palliative care people say this.
At the end of the visit, after all the meds were administered, I had a frank talk with Linda. She told me that in the best of all possible worlds, my mother has a few weeks to live, and maybe a month or two more if her vital signs stay strong. Because she still quite aware, now is best to see her friends so that she can say goodbye. The nurse said that my mother's body will begin to rapidly change now, and the children are best seeing her as soon as possible, knowing that this will be the last time they will get to see her, and so that they will not be disturbed by how she looks in the near future.
Once the appetite goes, the body begins shutting itself down. Linda says this is an amazing feat -- that the body turns on a switch, and begins preparing itself for the inevitable. She says that my mother will begin sleeping more and more. These are actually more like little comas that will slowly get longer and deeper, until one day she will not wake up. It is a gentle departure, with no pain at all.
I was not shocked to hear this since her sleeping has changed and she does not look the same in sleep now as she did when she was vibrant and healthy. But it did transform me, and I am much less innocent than I was a few hours ago. Particularly as I saw my mother laying in bed, like a baby, with a diaper, covered in punctures from the tubing, a pickline in one arm, butterflies in her thighs, not really aware of what all this means. Not really aware that this time must be spent in the pursuit of "good bye" and the celebration of an incredibly triumphant life.
She has been telling me that she will call her friends "tomorrow," but of course she doesn't. It is unlikely once I leave here that she will use the phone to speak with me or to any of us who love her. So now her friends speak with me and get an update, and sometimes I convey the back and forth messages as my mother sits next to me. Some of her friends cry, but most of them are just sad and careful not to upset Ann's little girl -- me.
A couple of them have come forward to prove themselves that they have never been friends at all. But none of this surprises me as much as it makes me hurt and angry.
None of us who have been with my mother lately really feel that she is aware of what is happening -- she innocently asks about when her appetite will come back....what about the next round of chemo (Linda thinks it's a terrible idea, but agrees with me that if this is my mother's wish, it must be honored)...when will the diarrea stop...why she is sleeping so much...and so forth. We let her believe whatever it is that she is believing, and I don't ask her what she is thinking about too much, because I don't want to hurt her. When she is awake, she stares a lot, and there seems to be the look of regret in her eyes, which now gaze out from her drawn, ashy face.
Now, there could be a miracle, and she could make a complete recovery. It has happened before, as Marty and I heard from my mother's oncologist. However, I am also hearing the reality as I perceive it -- that the palliative care team at Baycrest is top notch, and once they begin their work, it will be comforting for my mother and for those of us around her until the end.
As for me, I am 45 and living in my mother's basement in Toronto where nothing much has changed since we moved to this house when I was a kid. I am not sleeping. I miss my bed most of all. I wish I could have spent all of this time with Marty, focusing on the kids' upcoming school year in new schools, and fussing over each other, fighting over the remote, dining on Indian food, walking the track, him letting me bicker about narishkeit, playing Scrabble and laughing a lot, in a world free of illness and tragedy. I wish we could get back all of the Saint Martins, New Orleanses, Europes, Niagaras on the Lake, Muskokas, Chattanoogas, Arizonas, Seattles, Las Vegases and Nashvilles that gave us such a joyous time together. We crave one week to celebrate life and live it to the fullest. We have vowed to take that time. Not "some day," but as soon as we make an opening we can squeeze through.
Before I continue my complaining, let me give you the good news. The good news is that I will refrain from detailing for you the following current events from our Summer That Wasn't:
- Other family health matters
- NJ garage flood with 6 inches of water that I waded in for around an hour as I dredged and tried to get the sump pump working
- My resulting acute tonisilitis, high fever and strep episode that started in the plane, en route to TO
- Broken boiler in mom's house during my tonsilitis
- Dad's soiled stuff and my inability to launder anything or bathe due to broken boiler
- My cancellation of the Scrabble event that would have taken us to my beloved New Orleans
- My lack of favorite activities -- sleep, rollerblading, tae kwon do, and proper meals
- How much I miss and appreciate my husband, our life and our home
- My pre-menopausal PMS and its miraculous property of making me able to get everything done, all at once, all the time, without anyone getting in my way.
- Beautiful Miriam and Yona, who are truly my life and my reason for being; they do not leave my thoughts for a moment. I am in their service, and this is how I can suck it all up and stay strong.
From my communication center in the ancestral basement, I am orchestrating my war. I am at war with neighbors on all sides, with zoning police, a pending trial, and other matters of intrigue. I know that at the end of the road I will have done the right thing for the right reasons. I may actually win some of these wars, but they are not important to me now. Doing what's right is what matters most to me. So that one day, when I do manage to get some kind of regular sleep pattern going again, I will be able to sleep with a clear conscience.
A few positive things have come out of this: My mother is happy to have Josepha the domestic coming to live in the house starting Monday. She is a wonderful woman who knows exactly what is going on. She worked for a couple -- both dead now, but both of whom lived into their late 90s, and she knows what geriatric and palliative care is about. She will be a great companion for my mother and my mind is at ease knowing that she will be in good hands. We are looking for 24/7 round the clock care for my mother on the weekends now, and the community palliative care unit is able to fully subsidize this through the government. My mother has it right: "Josepha is an angel."
Marty and I have taken care of the power of attorney issues and the banking. I have successfullly put my father in a temporary home and he is well on the way to permanent and subsidized living in a nursing home. He is still strong, but crazy and toxic, and after decades of abuse, my mother just wants him kept away from her. He is safe, housed and fed, and despite the wagging tongues of all the cackling hens, that deed is done. It's over. And I'm sure I'll get some grief over it for a few years, yet. The alteh kacker keeps on ticking.
And there has been a core of amazing people who have been there for my mother. Most are cancer survivors, or people who have lived with loved ones who put up a fight and won for a long time. They have been a source of inspiration to my mother. She is tough -- she asked for the strongest course of treatment, and she also wants to go ahead with her commitment to speak at the Wychwood Library this November about her remarkable wartime experiences. I am encouraging her to do it.
My mother has touched the lives of thousands of young people, telling her story of how she survived the Holocaust. She truly reached many of them. My mother has all the letters of appreciation. This is her greatest source of pride -- those beautiful letters. The storytelling aspect of her life came late in her life, and I am really proud of her even if she was somewhat obsessive about it -- enough to cause us real concern! She kept writing, and eventually compiled and completed a memoir about her life. She remembered every detail, from the time when she was practically a babe in arms. We are all amazed at her recall.
She was an ethical and dedicated retail store owner who for 26 years just wanted to bring home the money and do a little traveling. I will always remember how she answered the phone when I'd get home from school and call her: "Good afternoon, Albion Style Shoppe." She threw a great Christmas party with pastrami and corned beef from Schmerel's, the kosher delicatessen near our house. The customers and other store owners, mainly Anglicans and Italians, loved to come by and leave a fruit cake or some Christmas cookies just so they could have a sandwich with rye bread, a kosher pickle and a little whiskey. My mum always gave a Christmas bonus and a gift to her girls -- usually a silk scarf or a bottle of Seagram's in the purple velvet bag.
As a kid I used to sit on the little waste paper basket in her tiny office and keep her company as she did the books at the end of the day on Saturdays. Although later in her life my mother would throw her fashion consciousness away and replace it with the obligatory dowdy Bubbie attire, I did learn a few things from her: grey pinstripe flares; a few good career girl wash and wear dresses, and rib knit sweaters. And of course that I should stay away from pastels, favoring olive greens and reds instead. My affinity for all things black broke her heart. She also told me to have a decent coat. For most of my life I shunned this advice until she sprung and got me a gorgeous black Jones New York midi coat with fastened elegantly with a single button, which I wore to threads.
And the Hadassah Bazaar -- the world's largest one-day flea market and sale? My mother and I learned that sometimes "used" is actually better than "new" -- a valuable lesson that I have passed down to Yona and Miriam. The Bazaar was a central part of our lives for many, many years, especially since my mother was elected to at least 10 terms of President of her Hadassah chapter. Bazaar day still is an unofficial Jewish holy day which falls on the third Wednesday of October, when you see everyone while having fun and buying lots of cheap stuff -- all for a good cause. I still have the down vest and leather/down ski mitts that I got there. Total cost -- two bucks. I also have the videotape that I made one year, featuring the infant Miriam and lots of great interviews with my mother fellow Masada Chapter members. Happy times -- selling merchandise, doing a mitzvah, being social and happy and comfortable. And laughing, and healthy.
I am watching and see the expression of what she has give me and my family -- a love of Israel, and the gift of Hebrew language. A love of all people. In her day, she could be so animated, sassy and funny. That was a very, very long time ago. Hard to believe now.
An annual colonoscopy would have prevented all of this. By all accounts, my mother has been silently ill for a minimum of ten years. But things really fell apart after her blockage, just two short weeks ago. As I watch the video of the Hadassah Bazaar, I am eerily reminded that my mother might have been saved if she had a polyp removed around the time that the video was made, some 14 years ago. She could have rung in the dawn of her Eighties at the Hadassah Bazaar this year, as a laughing and healthy old Bubbie.
So forgive me if I am not my usual goofy self tonight, but this is all so new, and I am terribly alone tonight, as my mother lay sleeping in the other room, possibly in the best health that she will have for the rest of her time here on earth.
Maybe once we get over this hump I will be able to objectively reflect and understand that my mother had symptoms for many years, and that things were going south when her mood changed, and she didn't enjoy the mall anymore, couldn't walk too well, started to sleep a lot, and became harsh and bitter. I wonder what she was thinking -- if the fear of possible illness ever crossed her mind. I will not waste her precious time by asking her these things. I will sort it out in due time for my own peace of mind, so that I can try and understand what has happened here. For now, I want her to focus on being comfortable and at peace. She is so happy with me right now and happy that I am managing her affairs and taking care of her. If this is what the job is, and if I am doing it well, then I am satisfied, even if I don't really understand the job.
After being sucked up in the vortex of this harrowing and other-worldly experience, I have only one prayer: May G-d protect us all, and may we all have the good sense to take care of our eventuality matters so that it does not rest on the shoulders of our children. Let's not let our kids wonder for the rest of lives whether or not they did the right thing. I'm here, I'm doing that, and I don't care for it much.
Keep the cards and letters coming.
Lynda
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