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Mom’s (on PD) in denial awaiting transplant

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  • Mom’s (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.
    Last edited by KellyMac; 11-27-2017, 06:26 AM. Reason: Caregiver needs help establishing boundaries