Kara Swanson's Brain Injury Blog

April 1, 2018

Informative Conversation

Filed under: Uncategorized — karaswanson @ 4:46 pm

I belong to a Facebook group for women who have suffered concussion and TBI.  One of the conversation threads really tore a scab off for me when the women were lamenting how so many of their spouses, kids and loved ones are so impatient and unforgiving when it comes to how much they forget in day-to-day activities.

It hurts, still, to recall how, when my dad would have another stroke, the hospital and rehab personnel would ask him what day of the week it was, what year and who the president was.

It didn’t upset me that he didn’t know the answers.  I didn’t feel impatient with him or irritated or embarrassed of him, like so many in the FB group recount.  Instead, I felt sick to my heart FOR him for, even in an advanced stage of cognitive damage, there was enough of him there to feel the shame at not knowing.

It breaks my heart still.

Until it starts happening to you, you cannot imagine the pains of embarrassment and vulnerability that come with the realization that you don’t have all the tools you used to wield easily.  Whether from age or injury or spreading condition, the stealing of our memory is a heartless, cruel thief.

For those of you struggling with loved ones who are intolerant of your problems with memory, I invite you to send them a copy of this blog and invite them to be a part of your SUPPORT GROUP that is willing to help ease and reduce such a painful part of our injuries.

Informative conversation is an on-going practice that keeps people with cognitive impairment “in the game” by using cues in everyday conversation.

Instead of fearing that and waiting for a brain-injured person to forget that son Timmy has his first baseball game on Tuesday, family members can help by inserting this information into everyday conversation for days leading up to Tuesday and throughout the day on Tuesday.

For example, they can say things like, “I wonder if Timmy is getting nervous for his big first game on Tuesday?”  or “Maybe we can take Timmy out for ice cream after his big first game on Tuesday” and “Do we need to figure out how Timmy is getting to his big game on Tuesday?”

In more severe cases of memory dysfunction, loved ones can help by integrating even more basic, centering facts into conversations.  With my dad, I used to start out my conversations with him saying things like, “On this wonderful Spring day in April, Dad, how are you feeling today?”  or  “With Christmas just two weeks away now, Dad, are you getting in the Christmas spirit?”

It’s easy to stand outside of us with our lousy memories, point out our short-comings and say, “There you go again!”

Anyone can do that.

But if support people and loved ones actually want to support and love, it would be great help if they would “get in the game” and actually be a part of a positive solution.  It doesn’t take a whole lot of effort or time and the difference can ease a lot of stress and aggravation in families.

If words matter then make what you say be helpful and supportive and easing to the person who is struggling.  By incorporating information into your sentences, you are GIFTING those of us who are exhausted by our struggles.  Please help instead of just pointing out that we are not who we once were.

It is already heart-breaking to know.

 

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15 Comments »

  1. Oh Geez… This hits hard. Working SO hard to be on top of everything, and failing (and flailing) my brain bucks away… I have had an ongoing battle for the husband to WRITE IT DOWN… I can’t recall how many times he has ‘changed stuff’ in passing and then hauled out the “WELL I TOLD YOU!”. Yeah, another lifetime maybe… It makes ME feel less than, and that is a feeling I cope with NOT well at ALL.
    I have 4 calendars. 4. I cannot integrate my ‘work calendar’ with my personal one, so I have to copy it. I remember that for as long as I am looking at it (on a good day). When someone tosses a totally NEW set of variables (whether it be family or work or friends I so long to spend time with) I ache. It HURTS. I get tight, and my shoulders heavy. I have a written calendar as well as the computer (different neurons being used 🙂 ) And then we have the ‘couple/family’ calendar. OH MY LORD.

    My kids know they can’t hint at me… if they need me to know what,when or where, they need to write it out to me and ask me outright… I want to be involved, but I won’t remember…

    Hugs!

    Comment by Barb George — April 1, 2018 @ 5:28 pm | Reply

  2. I don’t think most loved ones realize how really and truly painful this is for us, not to mention exhausting. It’s a lousy cop-out for them to tell us, “Well, I told you….” That’s simply not fair. They would never say to a blind person, “WEll, I showed it to you….” Same thing. It’s particularly painful when it comes from loved ones year after year, time after time. It’s cruel and mean. I’m sorry so many of us have to deal with this AND then feel like it’s our fault. Love you.

    Comment by karaswanson — April 1, 2018 @ 5:36 pm | Reply

  3. Beautifully stated Kara!

    Comment by Elise — April 3, 2018 @ 8:02 am | Reply

    • Thanks so much, Elise 🙂

      Comment by karaswanson — April 3, 2018 @ 10:57 am | Reply

  4. Kara, I would love to know the group you are in 🙂

    Comment by Barb — April 3, 2018 @ 11:51 am | Reply

  5. I, too would like to know the concussion and TBI group for women you are in, Kara. If you feel like sharing please let me know and thanks.
    Hope your dizzy wobbles are diminishing some this week!
    Peace,
    SL

    Comment by Sharon Lynn — April 3, 2018 @ 7:45 pm | Reply

    • It’s called PINK Concussions Women’s Group. I think they have two groups, actually. One is for women who are 25 and younger, dealing with more issues like college, etc. I am in the older group, as you might suspect. There are close to 2000 members and they are very enthusiastic and engaged in the support of all of us. 🙂

      Comment by karaswanson — April 4, 2018 @ 10:24 am | Reply

      • “…..in support of all of us.” That sounds so good! Thank you, Kara.

        Comment by Sharon Lynn — April 4, 2018 @ 8:12 pm

  6. It’s called PINK Concussions Women’s Group. I think they have two groups, actually. One is for women who are 25 and younger, dealing with more issues like college, etc. I am in the older group, as you might suspect. There are close to 2000 members and they are very enthusiastic and engaged in the support of all of us. 🙂

    Comment by karaswanson — April 4, 2018 @ 10:24 am | Reply

    • Thanks Kara! I will be asking to join. Girl Power!

      Comment by Barb — April 4, 2018 @ 1:48 pm | Reply

  7. You rock, Barb! Girl power, yes :)))))

    Comment by karaswanson — April 4, 2018 @ 1:52 pm | Reply

  8. Hey, Kara…. congratulations on your most recent blog award!

    Comment by Sharon Lynn — April 5, 2018 @ 1:25 pm | Reply

  9. Thank you, so much! It’s a honor for all of you to share, knowing how your input has so richly-colored the issues I put out there. For me, the value of my blog comes from all the people here who, knowing how they suffer and struggle, still manage to cheer for each other and reach out to each other with messages of help and hope.

    Comment by karaswanson — April 5, 2018 @ 1:36 pm | Reply

  10. First off people have to be supportive but when it comes to pursuing your dreams it’s best not to wait for someone to tell you what you can and can’t do.
    After I sustained my brain injury I was helped with regards to care but chasing my dreams of mainly further education I took the initiative.
    However head injuries affect people in different ways. Myself I lost the ability to do many essential things like meeting my soulmate. However I also Accomplished outstanding things despite my brain injury such as passing my MA in Town planning.
    Live to reach your full potential by sustaining your positive mental attitude because if you focus on your problems and limitations you become disempowered. My next blog will be about what happened to me hope you will follow my update

    Comment by maxmteliso — May 19, 2018 @ 3:26 am | Reply

    • Hey, Max, thanks for writing. Congrats on getting your MA. Don’t ever close the door on your chance to meet your soulmate. What do they say? Keep your heart open and love will find its way in. Best wishes to you. Kara

      Comment by karaswanson — May 19, 2018 @ 10:37 am | Reply


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