Saturday, July 08, 2006

Caregiving: gospel plows and vigilance

     Friday night was an “exceptional evening” for Patti going for an outing until after 9:30 PM. Multiple Sclerosis “fatigue” has given her a natural body clock that wants to go to bed by 7:30 PM. I should rephrase that “demands” to go to bed by 7:30 PM. <grin>

     We went to see The Buc Hill Aces featuring Brian Lockman at the Cornerstone Coffeehouse in Camp Hill, performing “songs you probably won’t hear anywhere else”. <grin> We’ve known the Lockmans since we moved up here, our daughters attended high school together. I meant to ask why the group is named after an old Pittsburg Pirate pitching staff, but that will have to wait. After all what’s in a name?

    Amazingly Patti found herself in the same audience with one of her cousins – JoAnn, Patti thinks. Prompting me to remind her that “it’s a small world” after all (and begin singing the dreaded song <grin>).

    Fortunately she and MS fatigue could be bribed by a Latte and a brownie.  And there was a chance to sing, after all, along with the refrain to an ancient Bob Dylan song, “Gospel Plow.” Definitely one song you probably won’t hear anywhere else. Brian's music and banter was perfect for the intimate environment ... and most important a fun evening out! 

     Outings and such never diminish the necessity for caregiver vigilance. I just find it boring to dwell on it in reporting all the time. Also over 20 years I’ve become very good at my job and can balance caregiving within other environments - to a casual observer it may even appear masked. However on the other hand I don’t want to paint a false picture to any reader.

     Any outing has at risk situations. MS related symptoms of dysphagia demand attended eating at all times, including snacking. I have to be her sentinel to compensate for her visual impairment, memory loss, and mental confusion. Unattended Patti can place herself in harms way in the blink of an eye, most dangerous are choking or falling.

     Falling? How can someone fall out of a wheelchair? More easily than can be imagined. Wednesday evening I received an embarrassed call from her care facility informing me Patti had slid out of her chair. Law requires they report every such incident. Even at a 24/7 care facility with staff in abundance and an alarm on her chair, she still manages to thwart the best of defenses, if given that “blink of an eye”.

     In a social environment, a caregiver has to turn up the sentry radar. There is unseen caregiver work behind any successful outing.


  1. Hi Patrick, just stopped in to say hello. It sounds like and and Patti are having a very nice summer. I wanted to let you know that though I am no longer writing in the journal, I still come by to see you.

  2. ........I read your journal daily but don't always respond, though it is like looking into your home without knocking!
    But on the subject of caregiver and outtings.....I am always exhausted after an outting and I bring home the "cares" with me.  With two to watch, sometimes it does get risky.   My mother tends to stop and look at things without warning and my hubbies ability to stop the motorized wheelchair isn't always fast .  I have been run over and run into but so far we haven't had any squished mother but have had close calls.

    Isn't it wonderful that  Patti could adjust enough to stay up a little later.    Mother is usually in bed before 7 and that makes a quiet evening for Jack and I.......Ahhhhhh the wonders of caregiving and it has been going on by families and for families for centuries.  

  3. glad you had a good time:)


  4. Hi Patrick, thanks again for giving Patti a "fun" evening, if only she could remember it! Joan emailed me that she saw you and Patti last evening. Joan was married to my nephew, Mike Dean, who died of a heart attack at the early age of 56 about 3 years ago.

  5. what an enjoyable evening! I bet even when you aren't with Patti, you probably have a hyper-vigilance about other situations and people that you don't even realize you are doing. I found that with situations with my daughter. When I wasn't with her, I was always on the watch for things I'd have to watch out if I was with her (like where the closest bathroom was, etc).

    neat that Patti could enjoy the evening, see an old acquaintance and listen to some quality music.


  6. Patrick, I see you as a sentinel. I like that word. It describes what you do. The image that pops into mind is the final scene in the movie, The Bodyguard. Kevin Costner stands quietly and unobtrusively at the back of a crowded room, ever watchful, his eyes scanning for anything that might be regarded as a "situation" and a danger to his employer. Not only are you Patti's Caregiver, you are her Bodyguard. Bea


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