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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, Iím fairly new to helping care with daily living for my mother and I’m struggling. Sheís been on peritoneal dialysis for around 2 years. Lately sheís 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 sheíd 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 hasnít been diagnosed & that her cardiologist hasnít 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.)

    Iím trying to help but itís difficult, mainly because she doesnít 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 wouldnít find that as worrisome if she had no hope, but sheís awaiting kidney transplant surgery ~ so itís 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. Sheís 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. Iíve 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? Itís hard to know just how pushy it is appropriate to be. Itís really hard.
    Iím also wondering how the recent heart trouble may affect her ability to receive transplant surgery. Iím 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 recipientís 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 Iím 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
    Talk to her, ask what you can do for her, don't tell her. Respect her wishes. You said it yourself, she has always been independent. As long as she is of sound mind allow her to live as she chooses.ask her if she would like to write a living will. She's an adult and wants to be treated as such. I watch my grown children live their lives and support them but keep my thoughts to myself. I also do the same for my mother, she knows what she Ned's to do but should be allowed to do otherwise if she so chooses. So I keep my mouth shut and just pray she makes good choices. You can offer to help, but allow her her dignity, don't make her accept it. Relax, the time will come when she will accept you help, its just not time yet.

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    • #3
      You should talk to her and help her understand the reality of the situation. I am an only child at 28 years old and I take care of my divorced mother, it was just us our entire lives so 100% of the stress fell on me and I had no one to turn too when i just wanted to crawl into a hole in the ground and disappear from the world. But I never let her see how stressed or concerned I was about her health situation, I never let her see me shed a tear. I've always managed to show her how strong I can be for the both of us, but there has been plenty of times where she would just give up. She would tell me she is so sick and tired of being sick, tired of having to go to the hospital and being admitted and she just does not want to live like this anymore. I would just constantly remind her that this is the hand she was dealt and she needs to be grateful for what she has, I remind her that there a thousands of people out there that have no other option but then to count the days they have left, no treatment for there illnesses and everyday of there lives they have to wonder if they can make it another day. With CKD there are options and treatments for you to live another day. Maybe she feels overwhelmed with all the responsibility this illness comes with but she feels as if she lets it show she will stress you out or it will be a major impact on your life. When I see where things are getting too much for my mom to handle (which it usually after being in the hospital) I just take full control of everything (meds, sugar, insulin, food intake, blood pressure, PD Dialysis) and when I feel she is mentally in a better place I start to let her take back her control of things. But i would suggest controlling the diabetes because diabetes does create calcification in arteries which can effect you being approved for the transplant procedure. During my mothers screening for getting a transplant they denied her due to calcification caused by diabetes, so she cannot be a candidate for a transplant so our only option is dialysis for the rest of her life. This is why it is important to constantly remind them of how grateful they should be no matter there situation, because there is always someone that has it worse out there. As caregivers we have to remain positive and bring the positive vibes around them and show them life is still life even if it is more complicated than others. I am always getting into it with my mother because she tends to hide a lot from me (medically) as well because she simply decides not too speak up, and I always have to remind her the importance of speaking up when something is wrong, and I tell her if she had spoken up as she should have then it would change the outcome of being admitted into the hospital so many times (she hates being in the hospital). She has finally learned to speak up when she should since it is less of a chance of her being hospitalized. Sorry to babble on about so much but I hope this helps in some sort of way. I wish the best for you and your mom.

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