Love and Other Things Remain

In this post I want to acknowledge a part of caregiving we don't talk about: the emotional side of this journey, some of what remains in caregivers hearts and minds, the things we wish we could forget, even when it's over.

It's been two years since Mom was very ill, in the last stages of Alzheimer's and FTD. The grief of her death has faded somewhat and the grief of losing her a piece at a time right in front of me through this disease has resurfaced.

The winter of 2013 was so hard on her. She felt so cooped up, agitated.  Her attention was fractured, torn.  On cloudy days Sundowners came earlier distorting her sense of time beyond recognition. Sunset was time for breakfast and waking up. So I did what I could to keep her calm and happy;  we went to restaurants that served breakfast all day, having eggs and pancakes for dinner when I finished  at work. We made hot chocolate when we came home.  It worked, but only for a couple of months.

Mom lived alone in our family house of thirty seven years since my dad died in 2004.  She was so fiercely independent, giving the home health workers I arranged to spend time with her a huge pain in the ass. She'd bribe them with cookies and promises of cash to leave saying she'd never tell the agency or me.  No one had to know that they left and she would be free of supervision. That always sparked a phone call to me at work.  I'd have to tell her they were staying.  It never went over well, ever.  She'd argue with me, becoming even more upset.  Being upset only worsened her behavior. Those poor women; they were wonderful.  And Mom was getting sicker. I didn't know how much worse it was.  I would have had to have lived with her to see it, she was that good at hiding it.

In all honesty, she was that good at fighting it. She had work arounds for a most things; like putting all the tv remotes in a pretty tin box and taking the box upstairs to watch tv in bed, then back downstairs in the morning to watch tv in the family room. Alzheimer's stole the remotes eventually, leaving me to endlessly look for them in odd places around the house, the work arounds no longer working.

 Her memory disintegrated much more quickly that winter; the shorter days and cloudy overcast Michigan winter weather only added to her confusion.

She slept little, couldn't remember falling asleep or having slept.  That winter, Mom had reached the point where home was not home.  She would spend time with me, but she was anxious. She had to return home to her husband and young children; they needed her to be there.  The kids were too young to be left alone, her husband wasn't home yet and they all needed dinner.  More and more I was her trusted neighbor, not her daughter, though that identity shift was fluid.  She kept packing a bag so she would be ready to travel home.  It was a repetitive task meant to prepare and comfort her.  What she was really doing was placing unrelated items in a tote bag or a decorative box, only becoming more agitated, confused. Mom packed a completely non-sensical group of things like mismatched sandals, balls of yarn, old letters, bills, toiletries, a word search book, a few photos, a coffee mug, a bag of chocolates, a fork, straws - just anything really. She was packing to go home. The house she lived in, while nice enough, was not hers.  Her family wasn't there, and they needed her.

One night in  February of 2013 she took a decorative box of these things and walked out the front door into the cold snow, wearing a light jacket and sandals at 12:30am. She walked down the block, across the street and rang a neighbor's doorbell. Had they seen her husband and children that night? she asked. They could see from her appearance and confusion that something was terribly wrong and called the police.

The police in her city are wonderful. They are trained, well trained, to handle people with dementia and their families. They found her within five minutes of arriving at the neighbor's house. Lucky for us her gait was slow and we removed her car from the house months earlier. An officer kept her calm, spoke softly to her while another officer looked through her odd box of belongings. They found an old letter with her address at the top and took her home, called my sister whose phone number was prominently written on a note next to the phone. She however was in California, and told the officer to call me.

I don't remember packing a small bag or the drive to her house.  I just remember crying, parking in the street when I saw the police cars in my mother's driveway, then trying so hard not to cry as I walked through the front door.  I hugged her tight choking back sobs.

Mom didn't know what all the fuss was about, she just went for a walk for crying out loud. These officers were so nice, but there was no need to sit with her.  Aw, why was I crying? She was ok. This one officer was just so good looking, he was her boyfriend. She told me he was flirting with her. But really, she could take care of herself.  There was certainly no need for me to spend the night, but if it made me feel better, sure.  Stay in the bedroom upstairs.

Mom had utterly no idea why anyone was concerned that she had taken a walk or that it was dangerous.

I was beside myself with so many emotions I could barely speak. Shocked that her illness progressed quickly enough that she now wandered. Sad that the woman I knew as my mom was so far away from me that she literally disappeared into the night. Worried for her immediate safety.  So incredibly grateful for the well trained, compassionate, resourceful police who found her. Heartsick about what I had to do next to take care of her, feeling so alone about the decisions coming up in the morning.  Exhausted from the whole journey she and I were on. I felt I was unraveling a bit too.

She could no longer live alone in the house.  My head was heavy with options that were not feasible, my heart even heavier with the only option that made the most immediate sense for her.  I could no longer do this by myself or with the help I strung together. I spent a sleepless night with her, watching her start to make hot chocolate on the stove top only to walk away up the stairs to her bedroom while I turned the burner off.

The next morning, after a doctors appointment to check mom out  we began researching care facilities for her and by March moving her into one. My heart broke with each phone call, each question, each decision I made even as I knew I was doing the right things for her.

So, late winter early Spring is a difficult time for me, and this second one is worse than the first. The seemingly unending gray, cloudy, overcast, snowy days certainly don't help.

I know that time will dull the pain of seeing her slip away from me.  I know that I have plenty of living ahead of me with an incredible husband, a wonderful sister and good friends.

But there are remnants, pieces, left behind, scattered in corners I didn't know existed.  Cold gray days when my first thoughts of the morning are for my mom, knowing she'll have a difficult, confused day. Oh... yeah, no longer an issue.  How odd is it to feel the slightest bit of relief that she's dead and no longer suffering from literally losing her mind? The contradiction is little comfort right now.

After one of those remnant encounters (sometimes there are more of them than I'd like to admit) I focus on pre-Alzheimer's Mom memories, better days and better times of encouragement or guidance, a shared fun moment of laughter to chase away the feeling of being haunted by things I can't forget and she never remembered.