Butterfly grew up with food intolerances and was diagnosed with ADHD, Asperger's
Syndrome, and learning difficulties. Now she struggles with OCDs.
This is the story of how we have faced these challenges.

Thursday, August 5, 2010

The Inevitable

Before I get on with the sequential story, there is something I need to mention. Our home wasn't exactly abandoned during this time. While we weren't living there, Hubby went almost every day to clean the snow, pick up the mail, turn off some lights and turn on others, often he showered there, just to create a presence. He came home a few times during power outages to start a fire in the wood stove so the pipes wouldn't freeze. He even kept some of my plants alive. On top of this, he also cleaned the snow at Mom's and took a lot of time off work to help with Mom's care. It was his toque that got put on her head during a trip home from the hospital. Without him, there were a few times I mightn't have gotten her up the front steps. He never complained. He was a rock. I have great taste in men. He is in the background of much of this story, because that's where he was. A source of annoyance to Butterfly sometimes, because of his typically male sense of humour, he nevertheless always had our backs. Needed to be said.

Pre-heart attack days.

Mom didn't do too bad through Christmas and her 87th birthday. Most days she got up for a wash and I was able to get her into the living room for her afternoon tea. She also took an interest in finishing some knitting and making some quilling art jewellery for Christmas, and some days she even felt chipper enough to sit at the table to write some greeting cards. She joined us for Christmas dinner, but didn't really eat much, or stay long. I got her settled back in her room and took her a wee glass of brandy.

Butterfly hung a couple of strings of those mini lights in her room to brighten it up for the holidays. We put a small, real tree on the library table in the living room, just as Mom always did and put up her decorations. Butterfly had a Charlie Brown tree in her room. The celebration that year was gentle and understated.

In the new year, Mom became increasingly stubborn about getting up. Sometimes I could tempt her with an equestrian event or something else she really liked on TV and get her to come to the living room to watch. But other days she really didn't feel like getting up and would say, "I'm tired, Wendy. I just want to rest."

As Easter approached, she was clearly becoming less interested in anything and was always feeling tired. Then came the hallucinations. She thought she was at college. Then she wanted to know how the college got hold of her property. I thought at first these late night imaginings were leftovers from vivid dreams spilling into her bathroom visits. But then very early in the morning I awoke to see her light on and went into her room to find her searching her bed for her ring. I assured her the ring was safe and got her settled down again ~ I thought. But as soon as I left, her light snapped on again. There she was searching her bed for her ring again, so I took it out of her drawer to show her it was safe. She looked at me accusingly and wanted to know how I got it. Something was clearly wrong. I got her back into bed, but then she wanted to pick the strawberries she apparently thought were growing out of her ceiling.

Butterfly was at her door by this time, and frightened by her Nanna's bizarre behaviour, she wanted to call 911. I told her to go ahead. I got Mom settled down a bit, telling her I thought she may have had a stroke. Butterfly stayed with her while I dressed, then we switched. Once again we followed the ambulance to the hospital. Turned out Mom had a bladder infection. This is something I had never heard of before, how a bladder infection can rob the elderly of their right mind. The nurses had long since ceased their visits, but it seemed to me this was a tidbit of information they might have left me with. It also would have been helpful if Mom's doctor had returned my calls to his pager the previous day, but he didn't. So Mom was admitted to the hospital and put on antibiotics. She was also tied down, because she wanted out and the nurses were afraid she'd fall and hurt herself in her efforts to escape.

After a few days, they needed the bed again, so even though Mom still wasn't quite herself, they released her. I wasn't sure I could even get her up the front stairs, but we managed, and got her inside and in bed, where she eyed me suspiciously. Over the past several days she had been living some interesting, but very imaginary scenerios. That first day back home wasn't a good one. Apparently I was the enemy. But I got her food and meds into her, and the next day her behaviour was more normal. She had a few funny glitches, like thinking that her well was in a community we used to live in. I told her the well was right outside the door. She looked at me suspiciously, then smiled sheepishly. I gave her a hug and welcomed her back.

That very evening she took another heart attack. I was beside her when she shuddered, and lost consciousness, her eyes rolling back in her head. Then she threw up. Hubby was there too and he dashed to call 911. When she came to, she wasn't happy that she was going back to the hospital, but she put on a cheerful face for the paramedics. Too cheerful. They took her to the hospital, but apparently the one paramedic told the doctor on duty that she'd probably just had too much nitro. (She hadn't.) Nobody asked me what happened. We waited in the emergency waiting room almost all night before I insisted on seeing her. There she was, hooked up to an IV. Her blood pressure was low, but unbeknownst to me, no tests had been done. She had told the doctor she was 78, turning her real age around. But the doctor only criticized me for sending her in, and the nurse suggested maybe I needed a vacation. They released Mom. I knew it was all wrong, but there was no one there who'd listen. It was just rotten luck that we'd gotten a bad doctor who let the paramedics diagnose the patients who came in. We took her home.

We got her into the house and poured a brandy for everybody, except Butterfly, then hit the sack. But not for long, for me. I took Mom's blood pressure every hour all day and tried to get something into her that would stay down. But nothing would, not even water. I wanted to call 911 again and hope for a better doctor, but Mom really didn't want me to. So I was up all another night with her too. In the morning, Butterfly was helping me take her to the bathroom when Mom collapsed. We lowered her gently to the floor and made the call. This time one of the paramedics took her blood sugar, and said "hmm 14, not bad."

"Yes it is," I said, sternly. I was tired and put out and in no mood for any more crap. "Her sugar is never above *7.8 at this time of day." The paramedic changed her tune and they got Mom into the ambulance, again with Butterfly and I following. This time we got a doctor who did the tests. He confirmed that she'd had a heart attack in the past few days. Her organs were shutting down.
Mom wound up in the ICU where her body stubbornly fought back. She said her goodbyes to everyone and was ready, but her organs weren't. After a couple of days, she was moved to a room again.

Memories are important when you lose someone.

Now, Mom wasn't there long, but this was when something happened that gave Bud a special memory of her Nanna to soften the blow. Days in a hospital room are long and boring, especially to a hyperactive kid, so Butterfly routinely went out to walk her dog or just goof around. One day she brought her skateboard along. She said she'd be careful to use it where there were no people. But she was approached by a security guard who threatened to remove her from hospital property. To this, my Aspie kid who usually couldn't say boo to anyone, told him he better not try it, because she was a minor and her mom was inside the hospital. He apparently didn't like being talked back to; she wound up telling him to go to Hell and came back to Mom's room to tell me what had happened.

Her Nanna was just waking, so Butterfly repeated the story for her, but before she was even through, Mom piped up, "tell him to go to Hell!" Both Bud and I had to laugh as we both said that she had.

Now, Butterfly knew how to lie, but it would have been unusual for her to lie under pressure, so I believed her story. When I approached this security guard (Butterfly pointed him out to me), he tried to tell me that she'd told him to f*** off. I looked him in the eye and said, "she told you to go to Hell. Do you know the difference?" This guy was visibly shaking and couldn't look me in the eye, so I know who was lying, and it wasn't Bud.

Some might think I should have admonished Butterfly for her behaviour, but I was very pleased that my shy, socially unresponsive Aspie daughter had stood up for herself when threatened by this police academy drop out. I want her to respect authority, but not those who abuse it. I was fairly bursting with pride that she had stood her ground.

Mom passed away in hospital, peacefully, not long after. We still smile when remembering how she shouted out, "tell him to go to Hell!" Sassy and spirited, right to the end.

*Canadian measure


  1. My father is nearing the end with colon cancer. I'm not sure how Audrey will react. She hasn't had as many years with him as Butterfly had with her grandmother. We are in the middle of the end-of-life stuff that you describe here and it's not pretty for sure.

  2. What I've found is that memories often bring more smiles than tears, so I don't shy away from talking about Mom, and I think that lessens the loss somehow. When you remember something they would have said in a given situation, it's kind of as if they're still around somehow. Sorry to hear about your dad. Hope you and Audrey get to spend lots of time with him before you lose him.