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The following post is reprinted from the Her Final Year blog entry of the same name, with minor adjustments.

Sometimes, being a caregiver can be a two-edged sword - you work to build a relationship with the afflicted, your loved one, and can become so focused on helping your loved one cope with day-to-day lapses ("brain farts") that you might also be enabling a form of denial & disbelief among family, friends or medical practitioners.

There's one example that springs readily to mind - I'll excerpt the entire entry from the book, immediately after the squiggle.

From the book:

Penny for your thoughts

(John’s diary. 5/6/04)

– Villa Rosa

Kathi, Georgia & I stopped in for lunch after taking Georgia to her neurology appointment. Dr. Penny said he wasn't convinced that it was Alzheimer's, suspecting that depression plays a role.

Part and parcel with spending more time with Georgia by having her on the occasional consulting appointment and running errands with her was that we established a better understanding of each other. One of the perks of this was helping her cope with her memory and mental lapses. I encouraged Georgia with clues and triggers to help her remember things like names. The neurologist's name -- "Dr. Penny" -- was one example. I placed a penny in Georgia's hand while we waited for him, after the second time she asked me his name. A minute or so later, I asked her the doctor's name. She looked at the penny in her hand and smiled. "Dr. Penny," she replied with a grin. When he entered, she didn't need to look at her hand. In fact, I think she'd pocketed the penny by that point. But she did remember his name.

This was one of those doubled-edged sword things. The blade cuts both ways -- my helpful "hint" to Georgia to help her alleviate the stress of not remembering the doctor's name and help her feel more at ease likely factored into the doctor's evaluation, as from his perspective Georgia was able to recall his name without assistance.

I didn't really think of that at the time.

Continuation of this thought... Folks suffering from dementia, particularly in the early stages, do a lot to try and compensate as well as hide their affliction. Care-givers, in spite of the best of intentions, may be enabling a form of denial in some ways -- that was the thought I was trying to articulate above, wondering if my assistance to Georgia to help her with the doctor's name was just one way of potentially helping her hide her symptoms, even though it was also a positive reinforcement of my role / relationship with her as care-giver/protector/assistant etc.

The doctor was correct - there did appear to more to what was going on with Georgia, and depression certainly played a role. This event took place relatively early in the caregiving process, but it was one that made a lasting impression on me.

Caregivers have a responsibility to their loved ones, but that includes remembering when ~not~ to step in so that other necessary caregivers can properly evaluate their charge. Learning to mitigate oneself when helping another cope with memory issues, confusion & fear isn't easy. It relates, too, to the oft-cited yet hard-to-maintain requirement that caregivers need to take care of themselves, as well.

It's a tough road. The journey is a little easier if one doesn't have to make it alone, but no matter who you travel with there should always be someone keeping their eyes on the road to gently remind you when to throttle back a bit, or adjust course ever-so-slightly.

And if you're the only one taking the journey with your loved one, that means never losing sight of the possibility that you might might miss occasional markers & rest areas. Remembering to watch for them may help ensure that missing them won't send you off on the wrong path, or get you hopelessly lost along the way.

Originally posted to GreyHawk on Wed Jun 27, 2012 at 08:20 AM PDT.

Also republished by CareGiving Kos.

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Comment Preferences

  •  Do you have any examples where you (12+ / 0-)

    or someone in the role of care-giver has inadvertently (or perhaps even intentionally) served as an "enabler" for someone suffering from dementia? (i.e., enabling the person to create the illusion that things are fine, or augment the sense that things aren't as bad as they may actually be)

  •  I may have done this inadvertently early in (8+ / 0-)

    my mom's decline. She complained of a series of physical symptoms (pain, nausea, etc.), and I believed that the was physically ill. A smart doctor finally realized that she was using these complains to mask the beginnings of cognitive decline.

    •  I think you did you what you had to do... (6+ / 0-)

      ...you responded to what your mom said, until the doc figured it out.

      You shouldn't be expected to be a mind reader or to be capable of divining actual causes of affliction out of thin air. :)

      ...if you helped your mom "cover" for the cognitive decline, instead of trying to determine what ailed her (which turned out to be different than the symptoms you were addressing), that might have been a form of enablement or denial.

      Either way, tho - once you encountered a doc who seemed to see through your mom's mask, you dealt with the new hand instead of folding...I get the impression that the doc's insight helped get you & your mom on a correct care path.

  •  My husband has cognitive issues and I frequently (6+ / 0-)

    find myself quietly supplying the missing word or explaining something that he just can't access the process for, and I also take point on any potentially emotional issues.

    I didn't realize how very bad it was until I watched him do an evaluation where I couldn't speak for him at all, and saw the gaping holes in his cognition that he has to work around.

    When you come to find how essential the comfort of a well-kept home is to the bodily strength and good conditions, to a sound mind and spirit, and useful days, you will reverence the good housekeeper as I do above artist or poet, beauty or genius.

    by Alexandra Lynch on Wed Jun 27, 2012 at 08:41:18 AM PDT

    •  Sometimes, it's hard to judge the progression of (4+ / 0-)
      Recommended by:
      weck, FindingMyVoice, Alma, nomandates

      issues that you're helping someone cope with if the changes are gradual over time - you adapt to little things easily, incorporating them into the routine.

      Sometimes the only way to determine how far things have gone is when you get a chance to see the person evaluated w/o benefit of your assistance.

      It can be a big shock sometimes.

      But that also underscores the fact that it's a labor of love, and that the caregiver is providing the means & method by which the affected loved one can have the highest quality of life possible.

      As long as the caregiver keeps this in mind, it can help him/her avoid completely burning out or jeopardizing his/her own health - thus ultimately defeating the whole caregiving quality of life thing.

      Of course, that's easy to say when you're not "in the thick of it" - and very, very difficult to do (or even hear) when you are.

  •  we attributed my mom's lapses to stress (3+ / 0-)
    Recommended by:
    GreyHawk, blue jersey mom, nomandates

    six years ago when my dad was dying.  The worst was when she got lost driving home from the nursing home; this was in an area she'd lived in her entire life.  We were concerned, but after all it was at night...  and for mom, her independence, especially driving, meant so much.  

    I think of her whenever I see a 'Silver Alert' notice on the highway.  Mom's been in an Alzheimer's facility for 3yrs now.   I still wonder how much losing my dad played into her rapid decline, even though all us sibs did as much as we could to help.   We made sure to disable her car before she had any accidents (we had to leave the car in the garage where she could see it so she wouldn't call 911 to report it stolen), but it was so so hard on her emotionally.  

    Comfort the afflicted. Afflict the comfortable.

    by FindingMyVoice on Wed Jun 27, 2012 at 09:52:39 AM PDT

    •  Losing a loved one is a serious stressor. (3+ / 0-)
      Recommended by:
      FindingMyVoice, nomandates, deltadoc

      Sometimes, the stress seems to push the progression of the disease, and the loss of the loved one - instead of relieving stress - becomes the reason for the person who suffered the loss to stop fighting as hard.

      Loss of independence also hurts: I remember when Georgia (a.k.a. "Mumsie" to those who followed my tales here during the caregiving cycle) worried about losing her independence.

      We were very fortunate - she voluntarily gave up the right to drive and gave us her keys.

      We held on to her car for a while until she got used to (and believed) that we'd never leave her alone or w/o transportation to do what she wanted or to go where she wanted. When she'd ask about driving, we'd gently remind her of her decision and for the reasons she cited, and she would nod quietly to herself as if confirming the decision.

      •  my mom was one to go out for a drive at the drop (2+ / 0-)
        Recommended by:
        GreyHawk, nomandates

        of a hat - a quick trip over to Niagara Falls in the evening (we lived about 20miles away), or up to the university to see a movie or hear a lecture, a side trip over to a favorite antique store or the library.  She loved to drive, and was a very good driver for many many years; she and my aunt toured all around Europe after they retired, with mom behind the wheel of a rental car & Aunt Sue navigating them through the streets of Seville, Rome, Berlin, Paris, London, over the Alps, and many cities and towns in between.   They only stopped when they 'aged out' from being able to rent a car.  No accidents on any of those trips, either.  

        My brothers and I would use mom's pride at being an RN to help remind her why she couldn't drive.  We told her outright that if we could be 100% sure that if something happened only she would be hurt, we'd be ok with letting her do what she wanted.  But, that's not the case with driving, and she would never, ever want to cause injury and pain to anyone else after her lifetime of working so hard to bring healing and comfort to others.  That did click with her, and make her more accepting.  But it seemed that her memory just went so quickly that we had to constantly repeat it, and we soon had to disconnect the car battery so she couldn't start the car when she 'forgot'.

        My dear aunt, mom's younger (by 18mo) sister, gladly gave up driving in any kind of bad weather or at night.  She moved into my mom's old home & is a mile away from one brother, and less than a mile from the supermarket & mall, so she's happy & content.   Her mind is as sharp as ever.  

        Comfort the afflicted. Afflict the comfortable.

        by FindingMyVoice on Wed Jun 27, 2012 at 10:40:56 AM PDT

        [ Parent ]

      •  thank you so much for posting this diary. (4+ / 0-)
        Recommended by:
        GreyHawk, puzzled, nomandates, deltadoc

        It's good to have some place to talk about these things.

        My brothers have been fantastic through it all.  I hate to think what it'd be like without them.  My heart goes out to everyone who is dealing with caregiving on their own, or without the love and support of whatever family and friends they have.

        Comfort the afflicted. Afflict the comfortable.

        by FindingMyVoice on Wed Jun 27, 2012 at 10:43:17 AM PDT

        [ Parent ]

        •  I'm glad this is helping, FMV. (1+ / 0-)
          Recommended by:
          nomandates

          It's hard to deal with caregiving w/o the help of family & friends, but - as both Shadan7 & I found, as well as countless others - sometimes the love & support of family and friends can also be one of the challenges that caregivers face.

          I'm glad your family has been truly helpful, and am thankful that you've shared that with us. :)

          •  yes. I'm not local, so I never feel as if I'm (3+ / 0-)
            Recommended by:
            GreyHawk, nomandates, deltadoc

            doing my share.  I handle the insurance, legal, etc stuff, and make sure I'm local to my mom when my brother wants to go out of town.  She's very, very well cared for, but he worries nonetheless.  So, whatever I can do to help him is worthwhile.  Hubby and I  take my aunt on vacation with us, mostly out west (grand canyon, etc) so she still can travel as much as she wants.  Yellowstone is next!

            Comfort the afflicted. Afflict the comfortable.

            by FindingMyVoice on Wed Jun 27, 2012 at 11:54:41 AM PDT

            [ Parent ]

  •  My dad (3+ / 0-)
    Recommended by:
    GreyHawk, puzzled, nomandates

    was part of an alzheimers study group for an experimental drug.  In a way they enabled him to get at least one of their usual questions right each time he had an appointment with them.

    Dad could usually keep certain things in his head.  Like he always knew there was something wrong with his brain even if he couldn't always remember he had been diagnosed with alzheimers.

    One of the things that stayed in his head was that they would ask him the date each session he had with the study personel.  They had a calendar pad, the type with the current date showing, in the waiting room and each time they would take him in he would look at it on his way in so he could answer that question correctly.

    My mom and dad ate out all the time at the same restaurants so they knew a lot of people at the restaurants.  We made sure the community knew dad had alzheimers so they could keep an eye out for him.  But any way when the other people at the restaurant would come over to their booth to say hi, mom would quietly tell dad the names of the people walking over so he could call them by name.  I don't really consider that enabling though since by that time everyone knew and accepted that there was a problem.

    I should be getting to reading the book soon.  We've had a few things going on the past few months and I just haven't gotten to it yet.

    •  There's a difference, I think, between "enabling" (2+ / 0-)
      Recommended by:
      Alma, nomandates

      and "facilitating" - it's a fine line at some junctures, but I think for the most part caregivers are more "facilitators" than "enablers"...you're not trying to help the person deceive anyone, but facilitating their capacity to live & function comfortably.

      It's where the facilitation of the person could endanger them or others - either directly (by making excuses for why someone might need to continue driving, for example) or indirectly (by helping the person disguise symptoms or hide issues that a medical, social or other type of official may deem significant) that "facilitation" crosses the line.

      I don't think my assistance of Georgia ("Mumsie") in the example cited was egregious, but it did stick with me in a way that reminded me not to over-do the facilitation when faced with someone who we needed to make an honest & clear, fully informed decision about her health.

  •  I'm having a problem with the 'enabler' (4+ / 0-)

    description. I had a most enlightening conversation with my Mom's psychiatrist when she was initially diagnosed with dementia. The most important thing he told me was that her 'executive' skills were gone. The skills that let you examine, plan, think critically and logically. He told me this because I was pretty sure she might be emotionally manipulating me. He told me it was not within her capabilities at that point. You know my most important lesson dealing with her dementia was to live in the moment with her. Keep it simple and focus on immediate simple goals...like going for a walk, smelling or looking at flowers. I think enabling is for the fully active mind. People with dementia need love and compassion, patience and a sense of humor. Enabling seems inappropriate for this situation.

    you get what you give

    by chicagobleu on Wed Jun 27, 2012 at 10:00:54 AM PDT

  •  My mother-in-law enabled my Dad constantly, (2+ / 0-)
    Recommended by:
    GreyHawk, nomandates

    including behaviors that were downright cruel to me. If he said something happened, she bought it. She never asked for my side, which meant he got away with name-calling and some truly nasty behaviors.  We finally had to ban her from visiting him because her presence made him horrible to deal with for several days after.

    Her reaction was based on a desire NOT to see that just because he had mild Alzheimer's didn't mean he wasn't capable of treating me as unpleasantly as he always had.  She believed everything he said. WHen, after conferring with the Alzheimer's group, I realized we had to take his car keys away to keep him from killing himself or someone else, she opposed me viciously--until I told her that my husband and I and her (we were living with her at the time) could be sued if he harmed anyone. THEN she sided with me.  

    The last time we mixed religion and politics people got burned at the stake.

    by irishwitch on Wed Jun 27, 2012 at 11:17:07 AM PDT

    •  That's a prime example of how family can (1+ / 0-)
      Recommended by:
      nomandates

      directly impede the caregiving of a loved one - it's something that happens far too often. :

      I was very glad to hear FMV's comment about a truly supportive family - even when family and friends ~are~ genuinely trying to help, it can sometimes make things difficult.

      I'm sorry you have to experience the rougher side of that. :

      •  She viewed him as a sweet old man (2+ / 0-)
        Recommended by:
        GreyHawk, nomandates

        which he was with her. It was only a week before his death that I finally acknowledged he'd been emotionally abusive (though not intentionally) my entire life.  That same social worker helped me see it.  MiL still will not acknowledge it with me.

        The last time we mixed religion and politics people got burned at the stake.

        by irishwitch on Wed Jun 27, 2012 at 11:40:26 AM PDT

        [ Parent ]

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