Lauri's story

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Lauri Briltz, left, with her late mother, Sandi.

On January 26, 2015 I lost my dear, sweet mother. She was 70 years old.

She lived for over eight years with a death sentence hanging over her. She fought hard but I wouldn’t wish her last weeks of “life” on anyone.

My mother’s final days consisted of her yelling at the top of her lungs for hours: “Daddy, please, please. Daddy, help me, please” and “Someone please, help me, please, please, please.”

Nurses came to try to calm her — they couldn’t. I got into bed with her to hold her to try to settle her — she didn’t. The entire unit in the hospital became agitated, panicked. This shy, reserved woman who never wanted to bother anyone spent her last hours of life bothering every patient, every visitor and every staff member in earshot of her plaintive wailing for help.

Some may say that my mom would have had no way to know that her last weeks would have been like this — but this was my mom’s greatest fear so she would have planned for it. She could have been spared all of it, had she had the choice.

A rare diagnosis

When she was in her early 60s, she was diagnosed with a fairly rare form of blood cancer called Waldenstrom macroglobulinemia. We were informed that, although not a fast-moving cancer, it was fatal and there was a life expectancy of seven years from the date of diagnosis. There is no cure.

For several years, she took periodic chemotherapy treatments, which seemed to put it into remission (of a sort). Then, two years ago, it took over her bone marrow and she ended up on life support in intensive care after the doctors saw no other option but to bombard her body with massive doses of chemotherapy.

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Sandi with her son, and Lauri's brother, Rick in 2014.

She survived this crisis but she, and we, her family, realized that this took a lot out of her. The drugs killed the cancer but also knocked out her immune system. She was discharged from hospital once her immune system started to rebound but she was soon diagnosed with C. Difficile and they seemed unable to cure it. She was in and out of hospital for about a year and, by then her body was ravaged. She had lost 80 lbs. and was weak. Bouts of shingles and pneumonia weakened her further but she continued to manage. She spent much of that year at home and had days and even weeks of feeling “OK.” She even found time to fall in love and re-marry. She wanted to keep living, and she did.

Not only did she keep living, she began to plan and organize her death. My mom never wanted to bother or inconvenience anyone. She put her house on the market and sold it (she didn’t want us, her kids, to have to worry about disposing of it later). She rearranged her finances and set up “her estate” so that it could be executed easily (she was a banker for most of her life). She began to spread the word to everyone she knew: “no funeral or any type of service.” She contacted the funeral home and made all of the arrangements from the hospital, and even wrote a cheque to pay for it. One day, I got an e-mail from her asking for my input on something she had written: it turned out to be her obituary. She knew that her time was coming to an end and it comforted her to be able to plan. I believe she felt it comforted us as well.

Last summer, she was once again feeling unwell and her face had swollen up. She went for a check-up with her oncologist and he informed us that she had non-Hodgkins Lymphoma. She needed chemotherapy again and it needed to be more intensive. She was plucky. She embraced the treatment — even telling me how lucky she was that all of these medical issues of the past couple of years had hit her “one at a time,” allowing her to battle them individually. That was my mom — always feeling lucky.

Running out of luck

Mom’s luck ran out in December 2014. She was sleeping more and, when awake, she seemed confused and sicker. We thought maybe she had an infection given the weakened state of her body. She was, once again, taken to the hospital but they could not detect any infection. They sent her for an MRI of her brain — the cancer had spread.

I went home that weekend to be with her but there was very little of “her” left. I know with all of my heart and soul that, if the option was available, she would have taken it and made the arrangements for an assisted death before she lost capacity to do so. One of her biggest fears, even before she was diagnosed but even more acutely after, was that she would become completely dependent and “lose her mind.” My mom was never vain but she was very dignified — she didn’t like people to see her unkempt, sick, not “in control.”

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Sandi in 2014.

Her last few weeks on this earth would have horrified and mortified her. By the time I saw her, the cancer in her brain had left her sick to her stomach, unsteady on her feet, almost deaf, in pain with almost constant headaches and so confused that she made little sense. She could follow the basic instructions of the nurses but could not make herself understood. I will never forget her efforts to tell me something that seemed to be of crucial importance to her and all that came out of her mouth over and over was “Grandma landed on a duck.” For the life of me, I could not figure out what she could have possibly been trying to say.

The cancer in her brain also seemed to leave her unable to sleep. Family spent every day with her from 7 a.m. to 7 p.m. and she rarely closed her eyes — never sleeping for more than a few minutes. We could not keep her in her bed as her mind was telling her something needed to be done: things needed to be cleaned; preparations needed to be completed; decorations needed to be put up; etc., etc., etc. We would come in each morning and the nursing staff would say, “Your mom had a pretty bad night, she didn’t sleep much.” They seemed unable to find any medication that could calm her and finally concluded that sedation seemed to be having the opposite effect.

'The indignities seemed to pile up each day'

Over the coming weeks, this was not resolved and her agitation continued. We had been told that they needed to be careful about the medication they gave her as they could not “hasten her death.” (However, it seemed that it would be OK for her to starve to death as, we had been told that at some point she would be unable to eat and then she “should go quickly.”)

Twice I arrived at the hospital in the morning to be informed that she had fallen in the night. The first time, she fell on her face and broke her nose, blackened her eyes, cut open the bridge of her nose, smashed her head and had a big goose egg in the middle of her forehead and sheared the skin off both arms (her skin was like paper after years of steroids). The hospital staff think she broke her arm. The second time, she fell backwards and we believe she broke her hip, as she never moved around again without grimacing, moaning in pain and holding that area. They did no x-rays to confirm her injuries as she was not able to cooperate with their instructions. The staff did not stitch her nose because they could not settle her enough.

This lack of stitching became problematic in the ensuing days. She continued to rub and pick at the area as it was irritating to her. When we were there, we would try to gently pull her hand down (what seemed like hundreds of times) and explain to her why she shouldn’t touch the wound. What about when we weren’t there to do this? I will never forget coming in on another morning and removing her restraining belt (they finally kept her in a broda chair with a strap meant to stop her from getting up) and pulling her blanket back to see that they had scotch-taped a pair of socks over her hands. She put her hands up in front of her face and stared blankly at them — seemingly trying to make sense of why she couldn’t see her fingers and use her hands, but not being able to sort out what to do about it.

She didn’t understand why she needed to keep herself covered up. My shy, dignified mother repeatedly pulled down her pajamas or pulled up her gown no matter who was in the room. One of the nurses casually informed me one day that she walked out into the hallway in just her diaper. I can’t imagine any family member would be OK to hear such a thing but, for me, it was devastating.

The indignities seemed to pile up each day over those last weeks. The thought that she was forced to endure them haunts me to this day.