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Mom’ (on PD) in denial awaiting transplant

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  • Mom’ (on PD) in denial awaiting transplant

    Hi there, I’m fairly new to helping care with daily living for my mother and I’m struggling. She’s been on peritoneal dialysis for around 2 years. Lately she’s become much more symptomatic and last week she was taken to the ER via ambulance with severe shortness of breath and extremely high blood pressure/sugar. (Hypertensive emergency ~ when I looked, after she’d been admitted and stabilized/allowed visitors, her systolic was 240 and her blood sugar was nearly 700.) She had pneumonia in one lung (has had a nasty & persistent dry cough worsening over at least the last year and a half ~ we haven’t found the culprit yet though recently I’m suspecting GERD and feeling almost desperate to be heard) and in the folder with her hospital discharge papers I found information on living with congestive heart failure. (I spoke with my father about it today and he assured me that she hasn’t been diagnosed & that her cardiologist hasn’t found signs of CHF. Dad is very helpful, though himself not in great health, yet also seems overwhelmed & checked out emotionally much of the time.) She didn’t take the last two antibiotics and didn’t tell doctors. She is lax with her meds & meals & records, etc. though she means well. She is secretive when things aren’t well. (Her level of secrecy seems to parallel the importance of transparency in a given situation and it’s maddening.)

    I’m trying to help but it’s difficult, mainly because she doesn’t want to be in a position of needing help. Previously strong & nurturing & vivacious & independent, she is in denial in many ways. (Expressing bafflement/irritation with docs over the cause of itching, for example.)
    I wouldn’t find that as worrisome if she had no hope, but she’s awaiting kidney transplant surgery ~ so it’s crucial that we help to keep her as healthy as possible as long as possible. She is mostly compliant, thankfully.
    Lately I see signs of uremia occurring, in a small amount of time. She’s overwhelmed (understandably), often confused and not managing her diet/sugars/meds as well as she needs to be. She needs my help, especially with meals, but resents this and refuses it at times. I’ve been trying to make an appointment with a diabetes counselor but she canceled it and has been resisting rescheduling. Does anyone here have experience with this sort of situation? It’s hard to know just how pushy it is appropriate to be. It’s really hard.
    I’m also wondering how the recent heart trouble may affect her ability to receive transplant surgery. I’m having my last evaluation appointments for living kidney donation on 12/6-7 and hoping that we will be able to have the surgeries soon ~ although she is highly sensitized (has a large amount of antibodies which may likely cause the recipient’s body to reject the new kidney). We are participating in the paired exchange program.
    I understand the importance of respecting healthy boundaries ~ but I’m not sure what those boundaries should look like, while the denial that I’m seeing really concerns me as I can see her condition deteriorating. Anyone with similar challenges or advice? I would really appreciate even just shared experience.

  • #2
    You and I have many of the same experiences with mother patients. At some level, you have to step back I think, You can't be the one forcing pills down their throats! (You hire people to do that! lol) That was a joke, but it can be the truth. I noticed the other morning as I was headed out the door that the AM box in the weekly pill carrier hadn't been taken. It was still early, so it wasn't some big drama episode... but I wanted to make sure before I left that she was covered for meds. So I carried the tray to her at her desk with a glass of water, turned off the monitor on her computer. Put it in front of her, kissed her on the cheek and said in a jocular way, EAT! NOW! She says okay.... we say goodbye... then I get a call from my sis yelling at me because she didn't take the morning meds.

    It's frustrating as hell with the diet too. This is all relatively new to us. She and I were road tripping in the middle of MAINE (live in SoCAL) waaayyy off the beaten path. She'd been slowing down a bunch over the past few years due to dialysis so I was familiar with what happened next,,, suddenly she's slurring her words, shaking her fist at pedestrians as we pass them on the sidewalk (which her father used to do after his second stroke, too. Weird). I try to get her to take glucose... but they fall out of her mouth. So I'm zipping along these country roads, force feeding her sugar pills headed back to a fire and rescue station I made note of on the way in. I called ahead and they got her back in balance and the ambulance took her to the closest hospital, and we were transferred to another one... no one was familiar with her history and it was a conversation cluster f--k. After a few days of this, I decided the best case scenario was to fly my sister fly on a red eye from SoCal to Boston. I'd hand off the Mom at the airport and she'd be only hours away from her doctors and comforts of home.

    So needless to say, this wasn't how anyone likes spending their vacation. But here's the kicker - We leave for the airport after four days of beds and tubes and machines and kidneys this and Kidneys that and new diets and tests and needle pricks and alarms and nurses and docs and bedpans and hospital gowns and crappy motels and take out food in some small grey town in Main.... 4 days of this, okay?

    So, on the way to the airport, we stop off for breakfast and after all that what does she order? She's not out of the Hospital 3 hours and she orders a California Omelette. The one with guacamole and salsa on top. Avacado and Tomato are 2 of the 8 foods that got cartoon pictures on her "don't eat list" handout the hospital sent her home with. "WTF?"

    So yeah, I get how difficult the managing of the diet can be. And the resentment that shows up now and then. Comments about how she's being "punished". There's a ton of denial behind it for her, if she doesn't accept it, it's not going to happen. Tha's how she handled her diabetes... eat what you want and dial up the insulin to get the levels back down. Which is exactly the behavior that caused the kidney issues! And the denials and the dishonesty that only ratchets up when caught. And then there's sneaking to mcdonalds at night or in the morning for milkshakes.

    And when this all went down in July, the moth ng out there's a lot I didn't get read in on at first, but I'm catching up.

    If I had more time I'd get into pointing out they are the cause of whatever uncomfortable side effect she's going through. And how if she'd (whatever) her life would be sooo much better. For my mom, I've learned she needs to be uncomfortable enough long enough before she'll change habits. If that came off as delightful cruelty, it's not. A gentle reminder that she might be bloated and feeling bad because of fish and chips she ate the night before.
    Good luck... I'm running so late!


    • #3
      Thanks for sharing! I think you’re right about having paid professionals (who aren’t their daughters) help ~ may be easier for them to accept.
      Last edited by KellyMac; 12-01-2017, 02:38 AM.