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  • Frustrated.

    Hello everyone. I joined this forum in the hopes of finding support, advise, and possibly wisdom in my struggles.

    I'm 31 years old. Works full-time. Single but in a relationship (going 17 months). Goes to school once a week. And I'm hoping to take more classes. Eventually. I have 3 siblings and a 14-year old niece. My parents are divorced.

    One of my sisters and I live with our 60-year old mom. She has been on Peritoneal Dialysis for 4 years. So far, she is doing OK. Sometimes, she frustrates me because she still salts her food. Though I love her very much so I let her have her way most of the time. She knows what's right and wrong.

    Since she and my dad are divorced. I'm left with taking care of her. And since she doesn't drive, I take her to her appointments, do the groceries, run errands, etc. And since she's scared to be alone, I can't make plans to hang out with my friends or spend the night over at my boyfriend's sometimes. She prefers me over my siblings to take her to her appointments because they can be very impatient with her and she feels a lot of pressure from them.

    My struggle is when I want to hang out with my friends and not able to be spontaneous as much as I want to be. She starts her dialysis around 9p, so she needs to have her solutions prepared around 8pm. So, I prep most of the things she need.

    I don't know why I'm sharing all this. I think I just feel frustrated that I can't live my life the way my friends live theirs. They don't have to worry about taking care of their parents. Most everyone is independent and live in their own little apartments. I miss having my own place. I miss my freedom. I sound so selfish right now, but trust me, my mom is always in my mind. I always put her first. Sometimes, I still feel that I don't spend enough time with her because I work full time. I leave work early sometimes to take her to her appointments; then, I feel guilty for spending the night at my boyfriends because I still feel like I don't spend enough time with her.

    I feel really bad for saying all these things. I know I should cherish the moments while she can still do some things for herself and that she's still around. And I do. That's probably why I feel guilty when I hang out.

  • #2
    Re: Frustrated.

    Is your sister not able to share the careing for your mother if you both live with her? Where you live is there not any respite place where your mum could go now & again to give you a breaK.

    It seems unfair that your life has to be on hold all the time while careing for your mother, Caoul you do have a chat with her doctor or nurse to get some help.

    Help may depend on wher you live.
    Kidney problems starrted 1980's when I had Saracoidosis
    Recenty started HD at my local renal u Init in Telford.Still having a few problems with my 2nd line.


    • #3
      Re: Frustrated.

      Dear Frustrated, you should know you are entirely normal. I am a receiver not giver.
      I know what my wife goes through and it is horrible. We have a worse problem we are together all the time, neither works.

      My suggestion if it will work because of location, place her on nighttime in center dialysis, Its 8 hours per night, from in the door to out is 9 hours on a good time and 9.5 usually.
      It is very good efficiency, the beds are regular hospital beds and in our case a private egg shell foam over mattress. Personal TV, headsets, and dialysis.

      Next there is a possibility that she could qualify for what we call Medicaid. It has other names other states. Then you could have a helper come in so many nights per week and have some freedom.

      Your or her church or hospital probably has a respite program for help a couple of days a week/month.

      Don't feel guilty. Its very probably harder on you than on us. But you do need a break!
      Let me know how it goes, I really care.

      May God have mercy on us all


      Idiopathic globular membranous nephritis 1999-2006
      Feb 2006 Dx about 1-2 yrs before dialysis. Dialysis start 6-2006
      Chest Cath 4 mos in center hemo dialysis
      Fistula, button holes, self stick days 07-09 in center hemo
      Graft nocturnal hemo 4Q09 to present


      • #4
        Re: Frustrated.

        hey girl..............I understand exactly where you are coming from.....I too have those guilty feelings when I feel sorry for myself for not having the social life and friends like others have because of my husband on dialysis and being sick.........I too work full time so I am usually exhausted (too much to even want to go out if I had the chance) but with some rest , I'm sure I would........I am a bit older than you though (almost 50) ........we shouldn't feel guilty........we are caregivers and lots of times it's harder on us than the patient......caregivers go through a lot as the others said ,,,,,try to get some help...try to get out more not only will be good for you but your mom as well...........resentment toward the patient can set me I know......and it's not that we are bad people for feeling that way , it's just human nature.....and we are human.........hang in there.........take care of yourself.....I really need to take some my own advice........haha............


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