Destination Unknown

I apologize for not getting back to you folks out in this sea of ether we share here.  I’ve been pulling extra shifts to make up for wages lost while I was looking for work.  I haven’t been performing a lot of x-ray exams during the day, but when I go to swing shift at the dementia care afterward, everything and everyone requires examination. There aren’t enough people to do it, or hours in which to complete it.  It seems that not many people like doing the job of care-giving.  I don’t think it’s the physical demands, which are high but simple.  I’m beginning to wonder if it isn’t the difficulty of trying to follow where these people’s minds are going (besides down the drain).

We humans attempt to make sense out of everything.  We are hard-wired to try, even when things are senseless.  I haven’t developed the ability to ignore what the residents are saying to me yet, and I’m unsure if that is even what I need to learn to do.  I have no problem with answering the same questions repeatedly for a person who can’t remember asking them.  What I find difficult is being asked questions that I am not allowed to answer completely, because I’m not high enough on the ladder yet, or because the real answer would upset them.  They haven’t got the strength of intact logic and emotional centers they would need to deal with the whole truth.  This is a difficult, essential choice we must make over and over each day between kindness and honesty.

“Why didn’t my wife call?”

“I don’t know, Pops.  C’mon, it’s time for dinner”

(She didn’t call because she brought him to the care home after he failed to recognize her and attacked her.  She’s been dealing with his deterioration for some time and is afraid of him now.)

“Can’t you get this thing fixed?  I’ve been trying to move and it WON’T WORK!”

“Try it now.  I made an adjustment.  I think it will work now.”

(He keeps setting the brakes on his own wheelchair and not understanding how to release them.)

“When’s the bus coming?  I’ve got to get back to Reno.”

“The bus doesn’t run this late, Maisie.  Why don’t you get some sleep and try again in the morning?”

(She lived in Reno years ago when her husband was still alive.)

“I can’t eat this.  I can’t eat ANY of this!  I can only risk it if it hasn’t been opened.  These people are clever.  They’ll do anything to see that I’m poisoned.”

(He is blind, and imagines “enemies” are in his room, stalking him.)

Many of them have selective sense impairment.  They can’t tell when they are wet or need to be changed.  Sometimes they’ll try to fight you if you attempt to get them clean.  Some still have a lot of grip, or they’ll cry or shout.  Fortunately they are also usually medicated, and physically slow to respond.  None of the residents have struck me yet, but the other care-givers insist it will happen one of these days, as it has to all of them.  I’ve been cursed at, but I don’t take it to heart.

We were seriously short-handed one night.  I kept racing from room to room, putting people on the toilet, brushing their teeth, washing them, changing their clothes and putting them to bed.  While I was overwhelmed in this process, one of my more agile pixies who roams all over the facility but can’t talk (except in gibberish) closed her door, dismantled the toilet tank, pulled out the hose and flushed it.  The toilet tried to do its job, but instead of having to fill the tank it now had to fill the room.  As I sped past with another sleepy resident, I saw the water spreading out under the carpet from her closed room.  We put her to sleep in the fireplace room and I spent an hour mopping, mopping, mopping.

Was she embarrassed at what she had done?  Was she content with whatever she thought she had done?  Is something inside her still seeking an avenue of expression, trying to flush away all this shit she’s going through?

There are also the times when a wheelchair-bound woman in a permanently curved pose will go “mMMMmmm”, because she likes the applesauce you are feeding her.  Or the one who has no idea what day it is, or where this care home is, or that she’s over 80.  She knows she can’t remember anything for long.  She’ll ask questions for guidance, and thank me for answering by saying, “You’re a good sport for trying.”  Another one who can’t string four words together that make sense, still smiles and says “I love you.”  Some only get as far as the smile.

I know they’re in there, God damn it.  I just know it.

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22 Comments

Filed under Communications, Emotions, Ethics and Morality, symbolism

22 responses to “Destination Unknown

  1. I saw a lot in this post that I recognised Mikey, Alzheimer’s is an especially cruel disease as it deprives people of recognition of their loved ones, fogs the happy memories and stretches relationships to breaking point.
    I wish care givers who really had a heart for the job would be handsomely paid because they are high value human beings, just like their charges. Societies who place higher value and so called “worth” on people who do middle or upper management “blah blah” jobs than on those who are in touch with the nitty gritty of caring for the very old (or the very young), will I believe produce more and more less happy people. We are breeding an ideal of selfishness and I believe that it will come back to haunt us…. sooner than later.

  2. Your post made me cry today. Life is just so unfair. I seriously don’t understand why some of us live a full, meaningful life for years and years… only to end up like this. Why does God allow this to happen? I’m seriously beginning to question whether there is even a God… well certainly not in the sense that I have always believed.

    I know that I am paralyzed from my neck down but I am so thankful for my mind and for my intellect.

    • One of the many engaging things about reading your work and getting to know you better, Tracy, is that you are also going through the process of re-thinking what “plegia” (paralysis) really is.

      You don’t have full voluntary muscle control and neural sensitivity, but your circulatory, respiratory and digestive systems work, and probably retain a degree of sensitivity. The part of the car that you don’t drive still needs and deserves full maintenance, converts fuel and produces energy for you to think, feel and make art with. It’s still all you, just (to use UK slang) a “semi-detached” living situation.

      So many people live in emotional, moral or spiritual paralysis. Some die imprisoned unjustly by circumstance or disease. Some adapt and evolve because of the change. I know your own enforced stillness became a germ of new growth for you.

      Dementia is an unanticipated by-product of advances in life-sustaining medical and nutritional technology. Bodies (including brains) do wear out eventually, and quit working properly even with a lifetime of proper care. If you live to be 90, the chance of developing dementia is one in ten. So, in the case of most of my friends in the home, it’s not a matter of fair or unfair. 2 out of 29 are younger than 85. More people live longer now, so this will be an issue of increasing importance for the rest of my life.

    • Tracey,
      I simply can’t begin to imagine what it is like to be a tetraplegic but I know that many people waste their lives imprisoned in walls of their own making and wallowing in their own selfishness and self pity. It’s often hard to restrain myself from shouting at them that they don’t deserve the privilege of life and freedom that they are so frivolously wasting and that it would be better given to someone such as you who would use every moment to the full.
      Sadly I’ve learned that trying to talk this sense to these people is hopeless, they are deaf and blind and resistant to any positive input. Yes it’s a waste and not fair, but you shine out the positive in what you CAN achieve and put many many people to shame. Bravo and well done.
      I only wish that a few people I know could be dragged by the hair to read your blog and for the switch to go on and for them to “get” how lucky they are.
      Sadly they are unreceptive to all but their own little world.. I don’t know if God is responsible but I do believe that there is justice for all in the end, in this world or the next, and that if you are such an inspiration to others and that means that your life is FAR from a waste, in fact it’s beautiful indeed.
      Thanks for the Inspiration!

      • Thank you for these kind words. I really do appreciate it. You brought tears to my eyes.

        • Wow Tracey, you are Thanking me?
          Yikes I don’t deserve it at all… All the Thanks is yours LOL… I have chemical lung damage and severe asthma and was having a quiet mutter this morning because the nebulizer power cord was cutting on and off (bend in the wire somewhere) and I was getting impatient with it…
          I read your posts and realise that in these moments *I too* need the same kick up the backside that I advocate for others I know, and to remember that I am exceptionally privileged that I *have* access to the technology that enables me do a LOT each and every day.
          Instead of viewing it as a burden sometimes I should see it more as the privilege it is, since without it, and access to the latest modern drugs my life would definitely be more physically confined.
          I might puff as I walk the steps up to my apartment, but I CAN walk the steps, so I can be grateful for all things, big and small.
          There is ALWAYS someone who suffers more than we do. Please keep writing and being You.. you really DO inspire 🙂
          Thank YOU !!!

  3. Deborah

    Hi Mikey – this is beautifully written. The question that keeps coming into my mind when I read these posts about your work concerns dignity. You treat the people you care for with great dignity and so they retain dignity. Would they otherwise lose their dignity? Do we humans have innate dignity, that may or may not be recognised and respected by others, or does it depend on how we are treated? I’m not sure I have asked this question very clearly,but it’s one I keep turning around in my mind. I would be very interested to hear what you think.x

    • I guess I must answer that very astute question by placing it in a faith context. Do we keep the Sabbath, or does it “keep” us? I treat the residents with dignity not only because I believe it is inherently deserved but because it is a way to maintain my own.

      In a scientific sense, their condition is neither dignified nor undignified – it just is. This they can do themselves, that must be done on their behalf to sustain them. That’s the equal justice of the scientific view, and also the limitation.

      The next post is about the efforts to help bridge gaps between what they can and can’t do, which I’m studying presently.

  4. You’re such a good soul. No wonder you got a cold. You must not rest much. Try to take care of yourself too.

    Great post. Thanks for remembering they’re people too. I’ve seen people treat folks w/ dementia as sub-human. I’ll never forget this one @##hat who yelled at me for talking to his wife’s aunt because it was annoying him (the aunt had Alzheimer’s). Still makes me mad though it was years ago and they’re both dead now.

  5. Thanks. Lisa. It wasn’t overwork. I caught it from a patient at the Urgent Care, who kept sneezing on us all. It was a nasty virus, but I’m over it.

    Life entails risk. It’s not a germ-free world, but we have our own inner armies to fight them off with. I killed this one. Some day, one will kill me – but NOT TODAY!

  6. Mikey, your post today has inspired mine for tomorrow …
    Thanks!

  7. Sarah Baram

    You are such a wonderful person. It is a privilege to know you, even if it is just through the WWW. You must always remember how appreciated you are, by everyone!

  8. Pingback: When buildings disappear but their Ghosts and Memories of Inhabitants remain… « Local Heart, Global Soul

  9. I am glad these people have you, because so many who deal with the elderly just don’t care at all. We are dealing with my mother-in-law’s dementia now and striving to manage her care and advocate for her, while being supportive, reassuring, but reorienting and not encouraginging paranoia. We also work hard to allow her dignity and respect. YI remember my mother’s complaint at the end of her life when she had memory issues, among other things, was that the caregivers seemed to have no respect.

    • I only have the experience of working at this facility, but in this place the ones who don’t care, don’t stay – because it’s a low-wage job. In a way, the low pay improves the quality of care.

  10. Mikey, this was a joy to read. I hope you never learn how to ignore what your charges are saying to you. You never know when you’ll hear what your soul needs. I was once dining with my landlord and his wife, an uncomfortable experience made moreso by the fact that their visiting 8-year old niece was across the table from me fidgeting and chattering to herself. All at once, in the tiniest lull in the adult conversion, I heard her whisper while looking straight into my eyes, “dream a dream of Jesus every day”. It may have been a fragment of some ditty she’d learned, or she may have been throwing words and ideas together, I may have misheard her, or it may have been the most beautiful confluence of benevolent cosmic vectors ever mobilized to bring me a word I needed to hear at that moment and season.

    It was probably just gibberish. Probably.

  11. lianamerlo

    I used to have a hard time trying to figure out how to respond to questions that had upsetting answers. I usually gave my grandmother the answer she wanted to hear, but I was never sure if this was the right thing to do. Other relatives gave the true answers and she would get heartbroken. It didn’t seem worth it to crush her cheerful spirit, and it didn’t seem to jolt her memory either.

    I remember one time we went out to eat and she told the waitress it was her birthday. It wasn’t her birthday, but we’ve all done this for a free piece of cake at some point, right? But she honestly thought it was her birthday. Who would take that away from her and spoil her day? My family. They told the waitress it wasn’t the case. I asked why they had to spoil her fun, but they insisted she had to know. The waitress stood there confused. The waitress brought out cake anyway, and while my family was grumbling about it, I was just as happy as my grandmother as she blew out the candle.
    I’m still not sure what’s best for a person with Alzheimer’s though. If I’m ever at that point I’m not sure I’d care to hear the truth if it wouldn’t help my memory. I might just enjoy living in the fantasy.

    • What you have learned better than some in your family is that kindness is often more important than honesty, whether dealing with memory loss or at all other times in life. It’s a hard lesson for many to master.

  12. Pingback: I worked in a specialized dementia care facility for nine months « kissesforelizabeth

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