Mom’s Secret Decoder Ring

secret-205657_640It’s the only answer. Mom has to have a secret decoder ring somewhere. When I was younger, you could order a real working secret decoder ring on the back of comics and MAD Magazine .25 cents. No, you could not get the secrets codes to the United States weapons arsenal.

Lately, Mom has been, for lack of a better way of putting it, keeping health related information from everyone. Think about it this way. She made a point of getting a POA (Power of Attorney) with me named as her agent in case something happens so someone could take care of everything. So then why would she feel the need to withhold findings from her health-related from me? Why withhold anything when we’ve already made it through years of COPD fluctuations, a stroke and then heart attack (same week), all the speech therapies, neurology and psychology visits, then a lung surgery (drained 1/2 the lung and scrapped 40-plus years of smoking residue off the walls), edema issues causing her to be admitted about four times over the past few years. Then over a six-month period, she loses 65 lbs. to be able to go through a double heart valve replacement surgery because the surgeon would not do it unless she lost a minimum of 40 lbs? I say “we” in that sentence only for the fact that I happily took on the duties of getting Mom to her appointments when she was unable to drive? I kept the family informed as to what was happening and was there for support through some stressful times.

Merriam-Webster defines secret as:

  • kept hidden from others: known to only a few people
  • keeping information hidden from others

I do not want to believe that she is withholding information from us because she doesn’t think we can handle it, that it will be too much for us or that she feels we are already to overwhelmed with what we have going on now that she just does not want to add to it. I’ve explained to her over and over (maybe too much) about how much we care for and would do anything for her, including having her move in with us when the time comes. If one of the above or any variation of one of them is correct how can I not take it  personally? This procedure is not some little, “Let’s remove an ingrown toe nail. O, “My, you have a fever.” This one is pretty serious.

You don’t go from a basic  biopsy to we need you to come back for a second procedure and this time we’re knocking you out for nothing. They’re calling you back in for a reason. With Mom’s depression, she’s already down and then getting a call like this would put any one, depressed or not, into a state of worry, which means an even deeper depression. You can always tell when Mom’s worried or in a depressed state, she will either start mixing up him/her or he/she and so forth or she will try and rush you off the phone call. Those are her tell-tale signs.

Of course, the family caregiver and the POA agent can be two different people. In my opinion both of these individuals should be made aware of any and all changes to a caree’s physical/health status. My questions to you is: In terms of medical, health and finances, when is it okay, if at all, for a caree, caree’s friend or other family members to keep necessary information from the family caregiver? Or from the caree’s POA agent? Should the doctor be required to inform the caree’s family caregiver of changes in their caree’s health or medications?

How do you deal with or, better yet, how do you care for a caree that does not confide in you 100%?

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Avatar of Richard

About Richard

My name is Richard (@kreisr1), I am a Tri-Fecta caregiver, for my mother who has COPD among other health issues. I co-care for my brother in-law who has epilepsy and co-care with my wife's for myself, I deal with Chronic Back Pain. entire life and now after living alone, in a care facility and a group home setting we had to move him in with us to provide him with the care he needs.  Finally, with my wife who is also my co-caregiver I care for myself, I have had chronic pain (mid-low back) for 21-1/2 years thanks to a drunk driver.  I write my own blog, pickyourpain.org where I share my pain with humor, as I see thing, "Pain Without Humor is Just Painful."  I am involved with caregiving.com in several ways, as well as participating in several of the weekly caregiving.com blogs, I also am involved in their Twitter chats, I also host the following groups, SPOT (Stamp Procrastination Out Today), A Task A Day, The Men's Group, Healthy Caregiver and several others.  I am also the moderator for the Caregiving.com Quiz Show and have a seat on the bi-monthly Hot Topic's show. I'm here to not only improve Roberts life, the lives of those I touch on caregiving.com and pickyourpain.org but to find a way to improve my own live.

12 thoughts on “Mom’s Secret Decoder Ring

  1. Avatar of LisaDLisaD

    My Mother tends to hide information from me and my brother. She used to didn’t want me to go back with her at dr. appts. but I did anyway. I’m kinda stubborn, now she doesn’t argue with me about going back. By doing that I know more than I did. I also ask her about her meds and make sure she’s taking them.

    Reply
    • Avatar of RichardRichard Post author

      Lisa, Thank you for taking the time to read through my ramblings. That’s and area mom never had a problem with because it all started with her stroke which took a good portion of her speech (mixing up him/her, her/she, she would introduce me as her sister, baby, etc. She knew what she wanted to say it just didn’t come out right. She recovered 99% of it, until she gets stressed or tired. That went right into her heart attack three days later, then her lung surgery a year after that and 4 months after that her heart double valve replacement surgery. Now since then several minor strokes which kick the speech mix up again. I understand what your going through, I also learned more by being in the appointments then she would have ever told us. I also sent mass text messages to everyone so she didn’t have to try and explain what was happening to 5-8 different people over the phone.

      Reply
    • Avatar of RichardRichard Post author

      PearLady, Because of mom’s stroke and heart attack being in the same week, I straight up to her it would be best to have a second set of senses in the room so we made sure we heard everything the doctors said. It also helped that I was her taxi for the first 8 months due to the stroke, so I was already there with her. And with the info I could mass text everyone with updates all at once. Thanks for reading my posts.

      Reply
  2. Cathy Mitchell

    My aunt has gotten to the point that she always wants me in the room. Partially because of the dementia and also because she knows that I am there to support her. I am on the record as her official person (why can’t I remember what it is called). I also say over and over that the only way I can be sure she is getting the best care is to hear whatever the doctor has to say. Usually works. Not always. I want a decoder ring!

    Reply
    • Avatar of RichardRichard Post author

      Cathy, I understand what your saying. I hate to know what we were not being told when mom was seeing her private (Not Military) cardiologist for the first two years. Now it’s like I’m just always there and we joke when it shirt/pants off time and I’m shutting the curtain. STSTM – Seen This, Seen That, Too Much. But joking is the way we deal even though we may know it’s serious, we still joke. But its notes, notes and more notes then its text them to Trish (my wife), brother (Mark) and other brother (Jim), her sister (Susie)/brother (Tom), easier than mom trying to relay information to five sometimes 11-15 people with her friends calling and its accurate. Thanks for reading the blogs of my various rambles.

      Reply
  3. Avatar of PegiPegi

    Richard, your Mom really is a cause for concern. Not that it helps, but perhaps she’s trying to protect you. If you’re questions were serious, I don’t think you should be left out of any portion of her care. If a family members has information that you do not, they need to alert you. One would think this is just common sense. I do hope you get some resolution for your peace of mine and her health.

    Reply
  4. Avatar of RichardRichard Post author

    Pegi, thanks for the thoughts and concern. It’s funny because we’ve been through this before and her sister has promised she would inform me of any and all situations and this (the next situation) she withholds it. I’ll figure it out. Mom has an apt coming up to which I’ll drive her and it’s a good time for, “another serious talk.” Thanks again

    Reply
  5. Avatar of ejourneysejourneys

    Hi, Richard — If your mom has put your name on her medical disclosure forms, I would think (and hope!) that you can contact her doctors directly to get the details. I find that sending them a clear, concise memo is the best way to go. The disclosure forms mean that your mom has already given the doctors permission to share information with whoever she has named on the form. (((Hugs)))

    Reply
    • Richard

      eJourneys, I agree with you 100%, however I fear if I pull out the “POA, I’m Approved” form to quick mom will shut me down and my mom’s side of the family know how to shut you down and shut you out. I don’t want to be there, also I used my freebie back with the cardiologist who almost killed her by not recommending she have the surgery, ASAP. Maybe one of the brothers should use their freebie for this issue? Thanks eJourney, good to have you back online.

      Reply
  6. Avatar of G-JG-J

    Richard,

    I understand your frustration. On a daily basis, I’ll ask my husband how he is (yes, I am on his POA) and he’ll say “fine”. It takes digging to find out that maybe that day he really isn’t. When my parents were alive they lived in AZ and I regularly spoke with them three times a week, sometimes more. I know they didn’t tell me things about their health, but the truth is, I didn’t tell them anything about mine, either.

    Your mom has already lost a lot of control over her own adult life. She’s lost her privacy and has people telling her what to do and how to do it. She doesn’t want someone micromanaging her life, even if she loves them.

    Give her a little space and she may open up a little more.

    Reply
  7. Avatar of RichardRichard Post author

    G-J, trust me I do understand what your saying however (I didn’t say, But), if your parent, sister or friend is canceling, rescheduling or not going to a biopsy appointment for what could possibly be breast cancer, would you not be pushing her to go? Here’s mom’s history in just the past 5-6 years (in order),

    2014 Admitted for Edema (x1 already), Depression
    2013 Admitted for Edema (x2), Depression
    2012 Admitted for Edema, Zapped to Reset Heart
    2011 Heart Procedure, Zapped to reset heart (x2), Admitted for Edema
    2010 November, Double Heart Valve replacement, Pace Maker install
    2010 August, Admitted for Edema (x2), Lung Surgery (Drain excess fluid, 2/3 full, Scrapped inside clean of cigarette tar build up)
    2009 Stroke, admitted for Edema, Heart Attack (minor), Admitted for Edema
    2008 Stroke, Heart Attack, Stroke (x2 minor ones)

    These are just those I remember, so when do we stop pushing to have her checked? So far we estimate just about $750,000.00 has been spent by insurance just on these procedures. She has also had both knees replaced, one of them twice. I’m wondering myself as to where’s the cut off.

    I really do appreciate your comments.

    Reply

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