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This was the day I officially became Mom’s caregiver.

The alarm woke me at 5:30. Outside, it was cold, dark and quiet, a typical mid-October morning. As quickly and quietly as I could, I hit the shower, grabbed some breakfast and got on the road. It was a Wednesday morning, but I wasn’t going to work; I was making the two to three hour drive to Mom’s for a couple of doctor appointments. It wasn’t going to be forever and I was getting used to these rides–even finding a bit of comfort in the routine of them.

I didn’t know at the time, but this Wednesday would be different. There would be nothing typical about it, and it would remain etched in my memory.  Today was the day I would officially become Mom’s caregiver.

Mom had already been ‘officially’ diagnosed with dementia, but she’d been relatively high functioning.  So, I’d been muddling along in our “new normal,” with baling wire and duct tape, making sure she was safe and keeping her at home. Thanks to the help of family and friends, I’d coordinated the administration of her medication, rides when she needed them, and regular check ins–all of it. In my heart though, I knew the situation wasn’t sustainable.  I did. I just wasn’t ready to admit it to myself yet. Partly for Mom (she was determined to stay at home), and partly for me (because I was scared of making the changes permanent).

A Drive to Become Mom’s Caregiver

The ride was uneventful and went by fast. The darkness gave way to glistening sun and the dulling colors of Fall. It was a nice morning for a drive. I just listened to sports radio and watched the trees stream by, but I quickly became lost in thought. First, about how I was going to de-stress Mom (doctor appointments seemed to be a trigger of her agitation), but then my thoughts drifted to  the appointment itself. “Is this the day they force our hand? If they do, they’ll be right…but,” I didn’t want to complete that thought. I couldn’t. So the questions just played on repeat until I pulled into Mom’s driveway.

When I walked into her apartment, it was noticeably less tidy than usual. There were old newspapers strewn all over the table, stacks of mail nearly covering the counter, and laundry on the floor. Not a mess by some people’s standards, but definitely out of character for Mom. After checking her medicine cabinet, I had a few questions–not a good idea. She lashed out, called me the dreaded “Matthew,” clearly annoyed that I’d ask such questions, or doubt her ability to take her own medication.

Anxiety

I saw this as anxiety right from the start and didn’t take it personally or engage. She was stressed about the doctor. No big deal, right? Part of our new normal. I’d seen it before and knew the cause. But I also knew this was different, her disheveled living space had sent my mind into detective mode.

It was a ten minute drive from Mom’s house to the doctor, but it felt longer than the trip I’d made from home. Making conversation proved impossible because Mom clearly wasn’t interested in talking. She stared straight ahead and clipped responses greeted any attempts to chat. I’d come to know these as telltale signs of Mom’s stress and tried to stay positive for both of us. But as we sat in the parking lot before walking into the office, Mom found something to say,

“I don’t care what they say, I’m not moving, Matt.”

It wasn’t the first time I’d heard this, and like all the other times, my response sought to reassure Mom. “That’s not why we’re here, Mom. We’re just here for a checkup.”

Kind of True

It was true, kind of. It was a checkup. But in retrospect, I knew (maybe even hoped) it was possible the doctor would say the words I could not say, make the decision I could not.  Mom was declining. I knew it. And it needed to be said.

As it turned out, that’s exactly what happened. These appointments were emotionally taxing–and this morning was no different. The reality was that Mom and I had different opinions of how things were going. I couldn’t ignore observations (like the state of her apartment on this morning) and it was painful to share in front of her. It felt like betrayal.

As the conversation went on, I could see from the look on the doctor’s face that the words were coming,

“Rosemary, it’s no longer safe for you to be living alone. I know it’s not what you want to hear, but these changes need to happen now, and they are in your best interest.”

And there were words for me, too,

“Matt, do you understand? These are big changes. Do you understand?  This is no longer a choice. Something needs to be done. Now.”

A Memory I Wish I Never Had

Everything seemed to switch into slow motion as the doctor spoke those words, and her eyes locked on mine for what seemed like an eternity. After I responded, “Yes, I understand,” she held the eye contact, driving home the point. It was time. Time to come clean with myself about the situation. Time to come clean about what was best for Mom. It didn’t matter if she and I liked what was best. She needed more care. That was best. And that was all. But I was afraid of the permanence of what it meant. Something seemed so final about the words: “I’m Mom’s caregiver”.  

I remember the fluorescent light of exam room–a Polaroid filed forever in my brain. I can still hear the directness of the doctor’s words, but the caring way in which she spoke them. The pace of her speech was even measured, as if to give us time to process what she was saying. Mom stared at the wall.  Not at me, not at the doctor, just at the wall. Tears streamed down her face and she made no effort to corral them. Or to brush them away. Her look of utter sadness and defeat in that moment will never leave me.

Fear & Relief 

On one hand I was scared to death, “How am I going to do this??” But on the other hand, I’ll admit I felt some comfort and relief, “She said it so I didn’t have to. Phew.” The doctor left the room so Mom and I could talk. But we couldn’t.  Not yet. We sat in silence, Mom still staring at the wall and me staring at Mom. Both of us were slowly understanding the role reversal, slowly processing that I was now officially Mom’s parent.

Because Mom already had her ‘official’ diagnosis, we’d already had the legal fundamentals taken care of–Power of Attorney, Healthcare Proxy etc. That stuff is important and necessary, but it had in no way made my caregiver status official in my mind–or Mom’s.  All of that was for the future. Until the future, as it does, became now.

Same Day but Forever Different

Mom collected herself and we hugged. She asked me what we’d do next and I answered the best I could.  I told her this chapter was ending, but another was beginning. And I meant it. Then I told her there were things to be excited about.  And I meant that too. Though at the time I could not think of much beyond the reality of selecting care, moving, resettling, figuring out what we could afford and what we couldn’t–what the new normal was really going to look like.

Nothing had changed while we were in the office. It was still Wednesday, still beautiful, and the car was right where we left it, as was Mom’s apartment, of course. But I knew everything was going to be different. For Mom. For me. And for the first time, I knew I had to take care of the person who had always taken care of me. For the rest of her life. I was Mom’s caregiver. Our new normal.

Can you relate? When did you realize you were really a caregiver?

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