The Ghosts

photo credit: Tommaso Galli

My mother started talking about “the ghosts” who live at her residence a few weeks ago when we were having our daily evening phone conversation.  It gave me a deep shudder, not out of fear that she was being haunted, but out of concern that maybe her brain was, which probably meant things were taking a quick turn for the worse.

The ghost talk continued, but the rest of her comments and personality seemed perfectly intact, at least at her current level of functioning.  She continued to get all the staff names correct, to point out each tiny mistake they made, and to ask them and me about small details of our lives that she recalled.  There was no other evidence of anything going wrong.

But the ghost talk became unrelenting.  The ghosts were opening her door, using her bathroom, sleeping in her bed.  The ghosts might hurt her; she wasn’t sure what their intentions were, why they had no boundaries, why they were never satisfied.  They walked the halls at night; they never slept, they wouldn’t listen.  They were sad and lonely; no one could help them.  They were never around when I came to visit.

One day during a visit I was sitting on Mom’s bed and Enid strolled in. 

“I can’t find my room,” she whimpered softly, pulling at her ear.  I walked her to her room as I had probably hundreds of times before.  She sighed and smiled when we reached her familiar door.  “Oh, this is it, this is it!”  Smiling broadly, she headed toward her armchair and thanked me profusely. 

Not five minutes later, we saw her wander by again, lost and pulling at her hair, wincing at the desperate effort to find anything familiar.

“That’s one of the ghosts!” Mom whispered loudly to me, waving her arms.  “See- I didn’t make it up.  They’re real.”

In a flash, I got it, and was pretty amazed at the metaphor, which was perfectly apt, if completely socially inappropriate.

“That’s Enid, Mom.  She’s not a ghost.  She has Alzheimer’s and she’s lost.”

“There are three of them,” Mom answered, unimpressed.  “It doesn’t matter what you say to them, they just keep walking.  There’s a face, there’s a body.  You can even tap on them, but there’s no one in there.”

“It’s dementia, Mom.  It’s gotten so bad that they can’t put their thoughts together.  Nothing makes sense so they just keep walking and searching.”

“Well I have dementia, and I don’t do that!”  She ambled over to the door with her walker and slammed it shut.

 She started to shuffle back toward me and stopped in the middle of the room.

“Wait a second here,” she continued much more quietly.  “Am I going to turn into a ghost too?”

She looked at me as if I held the key to her future.  I had no idea how to answer that.

“You have a different kind of dementia, Mom.  You have Parkinson’s.  I don’t know how yours will affect you later, but I do know they keep learning more about it and maybe they’ll have better treatment soon.” 

I had little such hope, but what else could I say?

In any case, it helped her switch from an uncomfortable state of terror back to being righteously livid.

“They float in all day and use my toilet.  They never flush.  Whose side are you on, anyway?  How would you feel if a ghost tried to get in your bed at night and didn’t even realize you were in there?”

I had talked to the staff and directors about Mom’s privacy and boundary concerns.  They responded by putting a big red “STOP” sign on Mom’s door, which they asked her to keep closed. 

“Ghosts don’t read,” Mom informed me.  The stop sign just scares off the people I want to see.

In the last few days, I’ve been able to convince Mom to start calling the ghost ladies and gentlemen by their first names, to ask them firmly to leave, using hand signal directives.  She’s gotten more assertive, a little more compassionate, (like her pre-dementia self) but her underlying sentiments are still the same.

As much as I feel terrible for the “ghosts”, and have plenty of questions about how they could be better cared for, I also accept that Mom’s reaction is basically human.  It has to be terrifying to be haunted by images of your most dreaded future, not to mention the violation of what she thought was her protected personal space.

As always, I’m exploring whether I can find a better living situation for her.  As has been the case for a few years, Mom is not stable enough to be in assisted living, but is obviously too alert and distressed by the behavior of her resident peers to stay isolated in Memory Care, where her doctors feel she’s safest. 

We’ve done a six month trial so far, and as her advocate, I’m going to have to disagree with them on this one.  They may be right about safety, but I feel the need to at least put up a good fight to rally for a more comprehensive (holistic) quality of life, which always includes an element of risk.

Mom’s current in-between transitional stage might last years.  Sometimes  it’s 1-2, sometimes 5-7.  Some of her peers are in the same boat, experiencing too much distress due to their greater awareness of how strange everyone is acting and how they’ve lost their independence. 

I would love to hear from any of you who’ve found good solutions to living situations for this awkward period between moderate and severe dementia. 

My hope is to find a smaller residence that draws less boundaries between their residents and uses more staffing to account for the people like my mom who will get confused several times each hour and need redirection and reassurance, but instead of isolation, need lots of stimulation and conversation with people who still make sense.

Looking beyond my small perspective and concerns about my mother, the “ghosts” descending on our country’s future as the next huge generation ages will provoke an immense ethical, medical, and social dilemma. 

  • Where do we put people who have become shells of themselves? 
  • How long should their lives be extended with drugs when they cannot experience even five minutes of peace per day?
  • Are there ways we keep people at different stages of aging (and life in general) together and still meet their needs?

I fear that Mom’s life will be extended too far after her awareness ceases completely.  She was quite detailed in her advance directives, but in my state (and in many others) these orders aren’t always followed if the attending physician isn’t comfortable withholding treatment.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Again, I’d love to hear your thoughts about this issue.

Some more food for thought– a NY Times blog article on questionably prolonging dementia with antibiotics for acute infections:  http://newoldage.blogs.nytimes.com/2010/07/23/when-pneumonia-follows-severe-dementia/

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5 Responses to The Ghosts

  1. Laura Frankenstein says:

    Wow – brought tears to my eyes. Your patient untangling of your Mom’s use of the word ghost is a poignant reminder to all of us (family members, friends & professional care givers of all sorts) to take the time necessary, when possible, to figure out what is the true message, rather than sticking with our first impression. What a kind & truthful answer to your Mom’s question about her own condition. Empowering her to use simple phrases to redirect the ghosts makes sense for now – if she has a script that works for each ghost (they may need different cues) that may help; better than keeping the door shut – how isolating. Your broader questions are haunting – they are a bit daunting & they are such pervasive issues. May you find the setting you seek for your Mom, may you always feel empowered to advocate for your Mom’s needs & desires, & may the health professionals on hand be able to listen & support you when you need them to.

    • Thanks so much, Laura. Appreciate your thoughtful perspective on this.

      I know there are lots of caregivers out there whose family members have entered the “ghost” stage, and I was hoping not to offend, while still being true to this experience at hand.

  2. Hello Meg,
    I am having a very hard time with all that you bring up in this post…I first read it last week at night and it just spooked and depressed me. So I thought I would come back to it on a sunny morning, and just have, and I am still shying away from all of it. And at the same time, I am concerned about everything you bring up…on a personal level for you and on a national (global?) level for all that lies ahead (and all that is going on now).

    My main thought on this bright morning (and trying to keep it that way-inside and out) is how you and I and everyone else handle these things that are so disturbing, so haunting, so hard? I am mostly avoiding and distracting myself from them, but know that is only healthy up to a point. How do you handle it, Meg?

  3. Hi Lesley,

    Sorry it scared you. I know we all have different ways of dealing with these not so pleasant issues, and mine is to hit it straight on, as probably has become obvious by now.

    Maybe that angle’s not so helpful for other people. Sorry again if it threw you for a loop. I know from your writings that your mom might be closer to that stage, and actually, when I wrote the post I was thinking of you and of Emily, a bit concerned that it might hit you hard in the wrong way.

    As for how I handle it, I appreciate the humor and conversation my mom has left and just try to take it one week at a time.

    My friend’s mother with dementia just died last week, before she got to the really bad stage. It was a blessing for her.

    Who knows what will happen?

    I guess I just hope I’ll have the strength and groundedness to deal with whatever else comes, and most of all, hope that my mom doesn’t get really distressed if and when she loses most or all of her awareness. I hope she’s more like Emily’s mom seems to be (more content in her eternal present moment) than the obviously very distressed woman my mom calls “the ghost”.

  4. Lesley says:

    Hello again Meg,
    Thank you for your concern….what you related didn’t actually hit home, my mom is far from that poor woman’s state and I have hope that she never will be…it was more it being brought into my attention and all that came with that. Like all of the really hard and sad things in the world.

    I am so glad that you were there to help your mom find an easier way to handle it. You did that brilliantly and kindly. That is what counts, and is what we are all trying to do for our loved ones in our different ways.

    Hoping your search for a better place for your mom will meet with success….

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