Visiting the House of Ghosts

I’ve going to see my mother today. With any luck, she may see me.

Earlier this year, my mother was no longer able to live in her home anymore. Years earlier, she had been diagnosed with early onset dementia. For the most part, even after that diagnosis, she was able to live on her own and function well enough without a lot of assistance. But as 2015 drew to a close, it was clear that my mom’s mind was not what once was. Exhibiting signs of what looked like a stroke, she was placed in the hospital. While it was not a stroke, her doctor made it clear. Her condition was worsening and she could no longer live at home.

My niece Julie took the initiative and began researching assisted living facilities. She found space for mom in a facility right in mom’s home town. In fact, it was about 3 blocks from her house.

Agreeing to have mom move to this place was one of the hardest decisions I have ever had to make. She had a perfectly fine house to live in and maybe, just maybe she wasn’t as bad as it seemed. But I knew better as did Julie and her sister Crystal who, between the two of them, had taken care of mom more than anyone and bore witness to her decline. Other family members who were less involved in my mom’s life were less inclined to think mom needed to go anywhere; the resulting heated discussions just made a difficult decision even harder. And even after it was made, even after it was clear it was the right decision as mom’s mental and physical well-being declined even further, it was still a decision I questioned nearly every day after it was made.

And the thing was, the decision to place her in assisted living was only a temporary one. As long as mom had some continued capability to be assisted in her living, she could remain where she was. But as her situation deteriorated and she needed more and more involvement from others, it was inevitable that she needed to move on.

So now she 40 minutes from her home town, further from home. The facility where she resides is specifically set up for the care of those with dementia and Alzheimer’s’. It is professionally run and staffed with compassionate people; I have little doubt that she is receiving the best of care.  But mom is also further from the person she used to be. She is more frail than she used to be, less self-sufficient, even more easily confused and frustrated. Her memories are a jumble of puzzle pieces that don’t come together anymore. And part of me wonders if I did this to her.

You see, I wonder about cause and effect. Yes, Mom has Alzheimer’s which causes a decline of mental and physical health, requiring a certain level of care. But there’s this thought that I cannot escape that placing my mother in a facility like the one she is in now is actually causing the decline in her health, not treating it. I know this is not true. I’ve spoken with her doctors, I’ve seen the reports, I’ve seen her and what was happening to her even in the comfortable environs of her own home and I know for a fact that she was heading down this path to oblivion no matter where she was. But without the help she’s getting now, she would be on a steeper slope and in a lot more pain and discomfort. Still, it is hard to shake the questions in my mind: did I and my family do the right thing? Did we do everything we could? Have we acted to make things better? Have our actions made things worse?

Today I’m going to see my mother. The last time I got to see her was right before our trip to Disney in Florida. I approached that visit with some trepidation. Julie informed me that her last visit, mom didn’t know who Julie was. I should clarify that while Julie is technically my niece, she’s been more of a sister to me, a daughter to my mom. Maybe one day I will share the story of how that came to be. But that’s for another day.

I wrote here before about the day I drove mom to her new home and how I thought that mom believed I was my dad. So there was no telling what her reaction would be to seeing me.

On the occasion of my previous visit, I arrived while mom was in the dining room for lunch. As I stood in the doorway, she saw me, smiled and weakly raised an arm as if to wave. As I entered the room, I heard one of the nurses ask my mom, “Do you know who that is?” And mom said, “Yes, that’s my son.”  She knew who I was.

I spent a little more than 2 hours with her that day. It was at once both too short a stay and too long. I was pleased to see how well she was being cared for but distressed to see how much she needed to be cared for. She insisted on walking up and down the halls. I spent most of that time chasing her, holding on to her arm, trying to get her to use her walker. It was physically tiring and emotionally draining as well. The emotional toll was particularly great when it came time for me to leave. My mom didn’t want me to go. Her thin, sinewy fingers wrapped around mine and I didn’t want to leave her.

Perhaps I could’ve stayed longer. Perhaps I should’ve stayed longer.  Damn me for being a coward but I couldn’t. I wasn’t strong enough for the hurt of the weak grasp of her fragile hand on mine. With the compassionate and kind assistance of a nurse, I was able to say my good-byes and take my leave. Damn me for being a coward.

So I’m heading back today. The most recent reports are not good, that she is weaker in both mind and body. When she sees me, will she see… me? Will she see my dad? Will she see anyone at all? Perhaps, even as her eyes take in light and her lungs expel breath, she is already gone. Perhaps I’m visiting a ghost.

That’s the thing about places like the one where my mom lives. It’s filled with people we can see and hear. But for all that, they’re not really here, ghosts still garbed in flesh. We can see ghosts. Can they see us? Is it a blessing or a curse if they can? I honestly do not have an answer for that.

Everyone, be good to one another.