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  • @#*$e #$% IC!

    Hello again, my name is Susan and I am the mother of an IC daughter, whose DX was confirmed around May 2011. Things have only gotten worse since then, despite several treatment methods, including Interstim. I don't think the frequent bathroom trips bothered her as much as the continuing and increasing pelvic pain. We have been to the ER so many times, I can't count them all.

    My daughter is 32 yo. She lives with her significant other, Steve, and her 2 children, ages 10 yo and 18 months. Since July, I have been providing care for my toddler GD. I don't doubt my daughter's pain one bit, but things have progressively gotten worse in our relationship during these long, very long, 5 months, that I have been caring for Charlotte (GD). We get into bitter arguments - seemingly whenever I would like to have some time at home, some rest and respite. Lately, where I had been leaving after putting the baby down for her nap anywhere between 1:00 p.m. and 2:30 p.m., I have let her know I am getting ready to head home, and she complains about not feeling well and wants me 4:00 p.m. on most days, sometimes 5:00 or after on others.

    It's not always the IC that is bothering her, she is plagued by headaches, nausea, stomach cramping due to constipation associated with pain meds she takes, tiredness, or just general malaise. She is in bed from the time I get to her house about 9:30 a.m. when the baby wakes, until I leave. She gets up sometimes for a few minutes and then, back to bed. Her life is spent in bed most of the time. I feel badly for her, I do, but her little daughter is really missing her mommy, so I feel badly for her, too. The 10 yo, McKenna, just kind of gets lost in the shuffle resulting from mom's illness. The baby requires so much attention it is difficult for me to devote any time to her at all. There is always a pile of dishes to wash and a kitchen to clean up. Neither daughter or her SO seem to handle anything but cooking a meal in the evening. Hubby is tired when he gets home from his construction job. He complains about back pain due to an accident he had earlier this year, along with arthritis. These folks are in their 30s! How are they going to handle their 60s? I feel rather insignificant in the face of DDs illness as all attention is devoted to her. It ends up being a case of who feels worse. That makes me feel somewhat resentful, even though I don't doubt her illness at all.

    I am on SSDI myself for the last few years, am 63 yo, and have my own physical and mental limitations. I don't have a lot of money, but am always shelling out a few dollars here and there for something she needs from the pharmacy, including her meds which her Medicaid does not cover. I also provide food for the kids whenever I can, and it is putting me in a really precarious financial situation. We talk about her applying for SSDI, but I can't get her motivated to go to the SSA office to start paperwork. Her father is an attorney, and he pays most of their bills, even tho SO works - he only makes $13/hour as a laborer. He only pays the rent - $600, plus his own bills. He dislikes giving her $ for anything - even $5 she needed one day for her asthma inhaler. Grrrr.......

    This week I worked 6 days straight, wanting so badly to go home after the baby was down for her nap, because I am exhausted, probably burned out. Whenever I "think" I am going to be "off" for a day, she calls and needs me, and I go running. Do I resent IC? YES YES YES!!!!!! Many days I am not feeling well myself, but I go anyway. I sometimes do think we older folks have a better work ethic than the younger generations.

    In 2002-2004, I had breast cancer, had a biopsy, mastectomy, reconstructive surgery, etc. Was also dx'd with an AVM - arteriovenous malformation in my brain, and had an endovascular embolization done, followed by severe migraines for several months due to nerve damage from the procedure. In 2004, I had back surgery to repair severe central and bilateral stenoses. I also suffer from depression. Despite these issues, I garden for the butterflies, and have raised many of them. It is my passion. This summer my garden was neglected due to daughter's IC. So I didn't get to be active with my garden very much at all. I thought retirement was going to be wonderful - instead it is miserable.

    I love my grandchildren very, very much. Kenna has spent a lot of time with me - I practically raised her due to daughter's other issues. Now she is busy in school, an honor roll student, plays basketball, takes piano lessons, and is in Girl Scouts. The baby is a little personality in her own right. I just want to be "Nanna", but have ended up being much more. My daughter and I have a lot of problems that began before IC took our lives. It just seems like she had absorbed my entire life, and that her demands completely consume my identity. I hope I die a quick death because there will be no one to care for me.

    I wish other caretakers would post here. Do any of you require a caretaker to handle household duties and raising children? Right now, I just don't even want to go back to her house! I want to be left alone for awhile to regroup. Am I being selfish?

    Please help me see things differently.

    Susan

  • #2
    Hi Susan,

    This is a very tough situation. You have been a good mother but there comes a time when you have to step back. I am not saying not help your daughter but she has to learn to help herself a little bit too. What would she do if something suddenly happened to you?

    There is help available to her and maybe she is going to have to experience some "tough love" in order for her to realize that you are there to help but she also has to help herself.

    IC is very bad for some people and I do understand not feeling good but there are all kinds of people on here who have to learn to adapt to their situations whatever they may be.

    I guess another option might be to tell her she needs to seek out what help is available to her and if she won't then you will have to take the necessary steps, including trying to get the help she needs for the sake of the children.

    I can't tell you what to do other than you have to take care of yourself and your husband too. You deserve that time at this point in your life.

    Hugs,
    Jolene

    "Life is what happens when you are making other plans" John Lennon

    IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

    Information for Patients can be found here.
    http://www.ic-network.com/patientlinks.html


    Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




    Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

    "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

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    • #3
      Thanks, Jolene! Words that help to give me "permission" to step back. I've always been afraid she would, and she may yet, withhold visitation with my grandchildren. But, you are right, I need to let her make some effort on her own to handle her disease and seek help in the form of counseling. She does not see or hear anything I say about needing my own time, rest, whatever. I think she chooses to stay in denial about my health. I guess no child wants to believe that mom or dad might not be there for them eventually.

      I would strongly recommend that other caregivers come to this forum and share their experience, strength and hope, because surely I am not the only one out there who has to cope with stress, burnout, etc.? Right? There is little on the Internet about IC caregivers, or for that matter, caregivers of adult children. Most has to do with children caring for elderly parents.

      I need this support because there is little info, and I have no family to go to just simply "talk".

      Susan

      Comment


      • #4
        Dear Susan,

        You are a very loving and wonderful mother and grandmother. I am not a care taker so I cannot offer that perspective, but I am close to your daughters age. I can relate to severe, debilitating pelvic pain. However, I am not lucky enough to have anyone close to me to help me. I live out-of-state for school. I am 5 hrs from home and my fiance is 4 hrs away. I do have some friends that I know would help me out in an emergency, but I would never ask them to constantly help me w/ things. So I have to struggle though everything on my own. And like dyno said, you will find a way to adapt and make it work. If I don't go to the grocery store, I won't eat. So I go at the time when I feel the best and try to get through it quickly. I find short trips are easier, so I just end up going a little more often. And I will go to the closest store, which may not always have the best deals. I cook for myself and still manage to keep my apartment clean. I drive myself to drs and pick up my own prescriptions. I do not have children, and honestly can't imagine taking care of them w/ how terrible I feel. I used to be a nanny over summers, so I know how much work kids are. I do manage to take care of a dog though (Which I know is a lot less work, but still is work). I guess what I am trying to say is, I can see why your daughter needs your help w/ her children, b/c they are a lot of work. However, I am surprised that she can't manage to at least do a little around the house or at least do a little more for herself.
        Do you think she may have depression along w/ IC? She sounds like she might for the fact that she spends most of her time in bed. Even when the pain is at its worst, I go nuts just staying in bed all day. Also, do you think her medications may be making her feel worse? Sometimes that can happen if they are not regulated properly. Some of them may even cause depression. You mentioned that she had other illnesses, are any of them that severe?
        I have to agree w/ Dyno that you can't do everything for her. I hope though for the children's sake that you remain there for them. They are very lucky to have someone like you there for them. I just hope that you can make your daughter see that you also need to take care of yourself. Good luck!
        25 yr old veterinary student engaged to a medical student-- so stress is all I know
        diagnosed w/ IC in Dec 2009/Jan 2010
        other issues: abnormal uterine bleeding, ovarian cysts, possible endometriosis, IBS
        currently take:
        neurontin 600 mg
        vicodin (for pain as needed)

        Comment


        • #5
          Dear Susan,
          It sounds like you have really tried to help your daughter. I was 35 when I got IC, and struggled incredibly to hang onto my job, apartment, and identity. I live alone, have always been single. I would say the support from my parents has been intermittent. It's nice when it happens, but I can't count on it. They have their own health problems, and my mother's moods are variable. This has been one of the saddest discoveries I've made in my time with my IC- to realize that my family is unstable.

          But, not having family to depend on too much has actually enriched my life. I learned I could count on my church, my friends, some coworkers, and my support group (not IC related, another issue). Reducing your caretaking and encouraging your daughter and son-in-law to be more independent may turn out to really help them in the long run.

          Even a fraction of what you are doing for your grandchildren, daughter & son-in-law is something that would be greatly appreciated by most of us with IC, and is quite generous considering that you have your own health issues to deal with.

          I hope that helps a bit. Backing off will probably be met with resistance, but it sounds necessary...

          Best,
          Kadi
          Kadi

          -------------------------------------------------------------
          I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
          ------------------------------------------------------


          New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
          Source - Pinterest
          "


          Current treatments:
          -IC diet
          -Elavil 50mg at night
          -Continuous use birth control pills (4-5 periods/year)
          -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
          -Pyridium if needed,
          -Pain medicine at bedtime daily, as needed during the day several times per week
          -Antibiotic when doing an instillation to prevent UTI
          -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
          -Dye Free Benadryl 50 mg at bedtime
          -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
          -Managing stress= VERY important!
          -Fur therapy: Hugging the cat!

          Comment


          • #6
            Thank you for your words of encouragement and sound advice.

            I continue to suggest therapy to my daughter, but she is stubborn. One day maybe. She is depressed for sure. It is genetic I am afraid, I used to see therapists off and on over the years, sometimes for very long periods of time, so I don't know why she rebels against it. I am thinking about starting again myself, but don't know where the $ will come from. I am overextended as it is. We will work it out.

            I jjust need some rest now and will come back tomorrow with possibly more questions and to make.

            I, too, have fur balls - 4 boys, all rescues. George, Sam, Bugsy, and Cuddles. They are a great source of comfort.

            Susan

            Comment


            • #7
              Hi Susan.

              Your Daughter is very lucky to have you. My mom passed away 9 years ago before I became sick. My mom also suffered with health problems all her life. I would give anything to have my mom here. I live with my husband and my 20 year old son and my dad lives downstairs from us. So I live basically with only men. My family is very wonderful, I have no clue what I would do without them. My husand is very supportive and helps me as much as he can.

              Your daughters husband should be helping her more in my opinion. I realize that he is tired when he gets home from work, but still, he should be able to help her some ( in example, he could do the dishes when he gets home, why should you have to do it?? It is hard enough that you have to take care of a toddler all day, and as you said, you have your own health issues you are dealing with.

              I feel very badly for your daughter as I know how debilitating this disease is. It has robbed me of my life, that is for sure. I do try and push myself though. It is not good to be in bed as many hours a day as your daughter is. This is not healthy. She needs to go back to the doctor, maybe even get some counseling. She may be depressed due to feeling so sick and in pain all the time. I know there was a point where I was in so much pain I use to just pray so hard for God to just take me, I did not want to be here anymore. Your daughter needs to get her pain under better control so she can be ale to function and be less depressed. I am sure it is the pain that is depressing her.

              In any event, I do feel for you, as it sounds like you are on your last leg as well as far as being exhausted. You need to make it clear that you need to care for yourself or you will end up sick,Then you wont be able to help her at all. You and your daughter in my thoughts and prayers!!

              Jen

              Comment


              • #8
                Thank you, Jen! She has been trying to call me tonight and right now, I am afraid to answer the phone. I'm sure she wants me to come tomorrow, even tho we ended Friday on a bad note. I just can't do it. I went to Walmart today to get some groceries and hurt my back.......again. I am having pain myself right now and just need to rest. It'll be okay. I have a pretty high PT level. But, I can't lift or run after a toddler right now. It's been several months since I have had to deal with back pain, so I have been fortunate. I'm pretty sure my muscles have been tense due to stress, and that led to injuring it again. Didn't get the laundry done cuz of it either.

                I kind of just want her to be on her own for a few days. I truly believe she can do it if she knows I won't be available to help. I am so sorry about your mother. We mother's really hate to see our kids in pain.

                Susan

                Comment


                • #9
                  I am not sure my post is really going to help much. I still decided to respond now. I did notice you have gotten some good responses so far. I will state I am a male that lives upstairs all alone.(and 45)(never married or made any babies)I deal with IC, but I also deal with degenerative disc disease.(and more tiredness and walk with a cane often) Hey! I have even had major neck surgery before, too.(neck fusion) I have had 1 day in December so far that I did not get an official nap.(not that I am impressed with that) Also, I have not worked ever since November of last year.(on retirement disability and appealing the denial on regular disability) OK. I can understand about your back hurting now. I can understand you don't want to go to see her on Monday.(which it is 12:15am where I am now) Of course, I do applaud you on all that you have done so far. Geez! Oh! I actually stay on my parent's proper,in a place above the carport. OK. My parents have helped me out on more than a single occasion. Of course, I actually wish I did not need any help or the need to be getting on disability. Sometimes, it seems good that I don't have a wife or kids because I feel like I am kinda burdening my parents every now and then.(and tell them not to help me sometimes)Oh! I actually said I felt like a burden, but they seemed ticked that I ever said that. Regardless, I will state I went to church and out to eat on Sunday. Yep! I did nap, but I went to a friends house afterwards.(although I don't have as much of a social life now)(Sunday night lifegroup meeting) There have been a few Sundays, or other days, in 2011 where I was hurting too bad to go anywhere, but I get bored sitting at home sometimes. (and tired of being online)(and tired of watching television) Hey! I have not driven out of the county lately because of all the pain and lack of energy, but I was stating I still do my own laundry and grocery shopping and get regular haircuts and so forth. OK. I am getting carried away, and I may not be helping any. Sitting here is not making my back feel any better, and I feel like sleeping all the way until the cows come home again. That will be all now.
                  Last edited by statesboro; 12-11-2011, 06:48 PM.

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