End of My Rope

[zendadachick]

i have been helping my aunt with her for the past 2 months, and she has been on CAPD for the past 2 weeks. this morning she had an assessment at the clinic and the nurse pulled me aside and asked how everything was going. i told the truth that my aunt is noncompliant and she doesn't want to do the dialysis on her own. when the nurse asked my aunt if she did the entire dialysis herself she said, "yes i do everything!" which was a blatant lie.  so the nurse had my aunt do the exchange by herself without any help and my aunt could do some of it but not all of it, she couldn't remember some steps, she couldn't name all the supplies that she needed, and she contaminated the connectors twice! this was of great concern to the nurse and she immediately alerted the doctor. the doctor said that she must do it on her own this week, if not she will have to go on hemo. they are also going to put her on an anti-depressant because they think she is depressed. i agree she is depressed.

anyways, my aunt is angry at me that i told the nurse she wasn't doing her own dialysis. She has been verbally and emotionally abusive (laying guilt trips)more so than before and i can't take anymore. she has also been saying that i've been mean to her which is untrue, it's just i don't want to give into enabling her because i want to help her become independent. i know she's not in her right mind but i can't help but go in my room and cry because what she says to me really hurts.

i'm emotionally drained and all this has affected my studies as I am going to college. i want to go on to pharmacy school and it is important i get stellar grades.

my parents can hear that i am upset when they call me on the phone and they want me to go home. they said they don't want me in what they called "a toxic environment" and that i should be focusing on my studies.

i think they are right. this will be my last week helping her. this will also be my last chance to tell her doc and nurse at her next appointment, i will no longer be involved in her care. i called her son and he said that he will contact her doctor, nurse, and social worker to work on my replacement. her son lives 800 miles away.

i feel sad i couldn't follow through for her and i feel guilty for telling the nurse the truth, even though i shouldn't be. my aunt guilt tripped me into oblivion and made me feel like i did something wrong.  my cousin (her son) said i didn't do anything wrong, i did what i could, the only thing that i did 'wrong' was try to help.

i haven't told my aunt yet, i'm afraid she will be ballistic. any suggestions on what i could say and how i should say it?

[okarol]

I agree, you need to focus on school. It's very kind of you to help your aunt, but if she isn't motivated to do her exchanges, perhaps hemo is the best treatment for her now. If I were in your position I would have been very frustrated.
Some patients really cannot cope with the new routine and all the work required to do dialysis. It's a lot of responsibility, as you well know, and it's not surprising that your aunt may be overwhelmed and depressed.
No matter how it's explained, your aunt may be angry or upset, so just expect that. Her son can call and tell her the doctor's have recommended in-center for now, until she's able to do her own PD.
I am sorry because it sounds like you really tried to help her. You deserve a BIG HUG! 

[galvo]

Yeah zendadachick, You've done well. Aunty now has to do the same.

[monrein]

I too think you've done all you can and you MUST focus on your needs and your goals now.  I'm glad that your cousin understands your position and supports you and you need to find the strength to withstand the storm that your aunt will throw your way.   We have an obligation to do as much as we can for ourselves and your aunt needs to face that reality.  You owe it to yourself to remove yourself from this situation.   

[Darthvadar]

Zenda, you've NOTHING to feel guilty about... You've moved Heaven and Earth for your aunt, and her behavour is HER problem, not yours....

I fully understand what you're going through... My mum was SO bitter about having KF... Everything was wrong with the world, nobody had problems as bad as hers, everyone else was having a great life... And worst of all, I could do NOTHING right!... For goodness sake, as far as Mum was concerned, I wasn't even holding the darn sweeping brush properly... Grrrrrrrrrr!!!!!.....

I finally came to the conclusion that Mum was just terrified... She had lost control over her body, and was now clinging on to every little bit of control she could... Even if it is the flipping sweeping brush!....

Mum's on PD too, after a year on haemo, she was very unhappy on haemo... She's on PD for two years, and despite three episodes of peretonitis, she's now doing well... What I would say though, and O'Karol has touched on it, some people are just not cut out to take full responsibility for their own treatment, and just can't cope either physically, or emotionally with PD... And as she's obviously pretty depressed, she may do better on haemo... As she has to go out to the centre a few times a week, it will force her to 'socialise' with staff and other patients.....

Meanwhile, your aunt COULD benefit from a list of the steps she need to follow while doing her PD... Mum has a list on the wall next to where she sits to dialyse... She never uses it now, the technique's become second nature... However, she won't let me take it down... She's just more confident with it there...

Meanwhile, whatever the decision... Whether your aunt stays on PD, or goes onto haemo, you have done your bit... You're a very young person, and however dutiful, or idealistic you are, you can't take the weight of the world on your shoulders... You need to get your studies over, and your career started... Sad to say, your aunt won't always be here, and you need to have a life... Please don't make yourself ill by continuing to care for someone who is in just too dark a place at the present moment to be rational... Good to hear that she's on Anti-Depressants.. But I'd say not to make the PD versus Haemo decision for about a month... It'll take that long for the pills to kick in, and for her to be rational about her capabilities...

Oh and by the way, I'm full time, only carer to my mum... I'm a wheelchair user... Thankfully Mum's anti-depressant has kicked in well, and she's far more reasonable and rational these days... Mind you, she has her moments... I'm going into hosp. for a knee replacement op next week, and she tells me that she's NOT going into the Nursing Home we had planned for her... Grrrrrrrr!!!!.... Talk about throwing a spanner into the works... Still, I've arranged lots of visits for her, and it's the best I can do!....

I wish you all the very best of luck... Keep your on life moving along... You only live once... Have no regrets!....

Keep in touch, and feel free to PM me if you prefer.....

Best wishes!...

Darth...

[zendadachick]

Thanks everyone for taking the time to respond.  I feel much better about my decision to leave.

And good news! My aunt is actually doing it by herself, she's calm down today and is not as angry.  I think it's starting to sink that the dialysis is not as complicated as she made it out to be. SHE JUST HAD TO DO IT!  She even did an exchange by herself when I was in school!!!  So I guess she's in survival mode now and she HAS to do it.  I told her that she should be proud of herself and that she did an excellent job!


When I told her the news I was leaving, she didn't throw a tantrum.  She just accepted the news and said ok.   I think she had no choice but accept it because I told her my parents needed me and they want me to focus on my studies. They ARE my parents after all and I have an obligation to them as I am their child and also to my education and future.

I'm feeling much better about leaving her on her own now and it won't be on my conscience.  The only problems I foresee for her is that she can't communicate effectively with the nurses, she has a hard time which %solution to use even though  I taped up the guidelines and the procedure to her wall, and she can't troubleshoot when a problem arises. I guess this can be worked out.

She'll most likely tell everyone I abandoned her, I was mean to her (she is the type to hold grudges). I don't mind.  If it takes her to be angry with me so she can be independent, take responsibility for health, and STAY ALIVE, then I did the job I came here to do.

[Mizar]

 You did what You had to do and You did it Well. No Guilt. Move on and Sleep Well.

                   My Prayers, go out to You and Your Aunt.

[RichardMEL]

I think you should not feel guity at all about what you did. You told the nurse the truth because they needed to know. Anyway they verified it themselves by witnessing her not quite doing an exchange properly so clearly she couldn't have been doing it all herself previously so you didn't really betray anything there, and remember you did it to assist her. It's good she calmed down and did her own treatment because she does need to take responsibility for that. As sweet and supportive as you have been to help her through this you need to focus on your life also, specially when it was obviously so stressful for you trying to help her anyway. I say kudos to you for hanging in there this long and seeing her to this point.

And if she claims to others that you "abandoned" her - well YOU know the truth of it, and isn't that what is most important here (apart from the wellbeing of your aunt). Hopefully now she realises how important it is to be compliant and careful with her exchanges etc and that she CAN do it without your help.

I think you've been wonderful thus far to help her like you have. Not that many patients have family members so willing and readily able to help out. On her behalf I thank you!

 

[looneytunes]

Good for you Zendadachick.  You have done so much good for your aunt by stepping aside and allowing her to face the facts and gain some independence.  CAPD at home allows so much more freedom than in-center hemo.  I hope she will come to appreciate what you've done for her.   

[texasstyle]

OMG I know the whole non-complicancy thing too well! truth of the matter is that if you don't alert anyone on HER behaviors, it all fallson YOU. I have a nurse at the diallysis who let's me tell her things "in secret". In the end it benefits the person on dialysis by being able to help maintain the best treatment possible for them. It is hard being a caregiver. Sometimes it may not even feel very fair but it is what is for now and this part of your lives. Tomorrow is a brand new day. Try to start it with good spirts! Hang in there!